This is a place for thyroid patients to share positive thyroid experiences with others. If you have had difficult experiences coping with your thyroid condition but have come through it and can offer hope to others then please let us know your story. We try to publish all stories that may offer hope and inspiration to us all.
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My ambition was always to be successful in my career as a writer and eventually I would become a successful career woman. The dream was I would live in a city as a journalist wearing the pencil skirt with that glossy lifestyle every woman wants. When I was diagnosed with Graves’ disease in 2015, at age 25, that took a backseat as my health was now my priority. The once flamboyant, sociable and outgoing girl became a shadow of her former self as I was under weight at eight and a half stone at five foot six inches tall with constant panic attacks, palpitations and muscle deterioration. I was lost. Now, at nearly 28 years old I have battled this disease and come out the other side. This is my story.
The beginning of the disease was more of a shock than anything else. What led me to go to the doctors was getting home, falling asleep almost immediately and being exhausted. The doctors tried to control the palpitations and panic attacks with beta blockers and carbimazole. The carbimazole was awful over time as I couldn’t drink alcohol as it gave me palpitations and the party girl ceased to exist becoming a nervous shell on the couch watching rom coms alone. Friends didn’t understand and constantly said, just deal with it. The stream of friendships I lost during the illness makes me want to weep but this disease is invincible and cruel.
My confidence and self worth was decreasing by the day. This was a girl who has graduated from a top ten university and once worked as a trainee journalist. After that, I took part time bar jobs which helped me to pay my way during my illness, which I really enjoyed. I could only get part time bar work so I decided to go into a full time job which I didn’t enjoy but it paid the bills. Ever since, my dreams took a back seat and survival and anxiety was now the key element of my life. However, when I got my strength back after radioiodine treatment in April 2017 I realised I didn’t want to just survive, I wanted to be free and live my life to my fullest potential.
In April 2017 after a year and a half of struggle, depression and anxiety I feel like me again. I thought, this is now the turning point of my life and I decided to be happy.
Taking part in the Great North Run in September 2017 helped me to conclude my illness by raising £350 for the BTF. The day was fantastic with a feeling of excitement as the Geordie crowds cheered on the runners. Personally, I didn’t find the run as hard as I had imagined it to be and was surprised at my resilience as my legs kept on running. The eleventh mile was gruelling and the last two miles were challenging but I met my target time and I was so happy to not only finish the GNR but to finish my battle with Graves’ disease once and for all with a smile on my face.
I have come out the other side of this disease as a woman and I have been on one hell of a journey but I will not let it define me as I still chase my dream of becoming a professional writer. I will never give up on my dream or happiness, which is what every soul deserves. Through this illness I want to raise awareness by writing again and doing something I love to make my struggles into a positive. I hope I can be a figurehead for other individuals who have suffered with this disease and that it is not the end, you still can follow your path. I will not give up until my goals have been achieved, as remember, you only have one life, so live it how you want to.
I’d never have discovered the lump in my neck had it not been for an alert GP during an otherwise routine appointment. I’d had no symptoms – at age 55 my career as an IT consultant and life generally had been as frantic as ever. The GP arranged urgent referral to hospital and a battery of tests followed – ultrasound, fine needle aspiration, CT scan – which showed that I had a thyroid nodule but frustratingly could not confirm it was malignant. My consultant recommended a total thyroidectomy and the eventual surgery finally revealed that I’d begun my cancer journey. They had found Hürthle cell cancer in my thyroid gland – thankfully it hadn't spread to my lymph nodes.
I made a good recovery from the operation itself but was off work for four months because of fatigue and my body adjusting to the levothyroxine medication. Meantime, I had radioiodine ablation to deal with any remnant thyroid cancer cells in my neck. My work were very supportive over this period and I returned to my job on a part-time basis.
Regular clinics over the months followed as the hospital team monitored my thyroglobulin levels. There was a gradual rise in readings, an indicator that the disease might be on the move. A CT scan detected some metastatic disease in my lungs so further radioiodine therapy was scheduled. This was to prove ineffective as in my case the disease was found to be radioiodine resistant. It was a big disappointment: RAI is such a useful targeted therapy for treating recurrent disease.
At the same time scans of my neck indicated new disease in my lymph nodes. Surgery and an intensive course of radiotherapy followed to deal with this. The radiotherapy was full-on: 30 consecutive weekdays of attending radiotherapy sessions. Thankfully I live close to the hospital so at least I had an easy commute.
I have most recently been taking Sorafenib, one of the TKI class of anti-cancer drugs, to treat the lung metastases. These powerful drugs come with many potential side effects but can help slow disease progression.
In summary, what can I say about my continuing cancer journey? It remains a roller-coaster with unexpected twists and turns. I’ve found having an assigned Clinical Nurse Specialist is very reassuring especially when issues or worries arise. My friends too are a huge help. I was fortunate in that I was able to take early retirement so I can enjoy hobbies and interests to the full. Despite all the ups and downs, there is much to be thankful for.
At the age of 25 I was diagnosed with thyroid cancer. Interestingly, at the time I was working in ENT (ear, nose and throat) theatres so knew a lot about the surgery and had worked alongside my surgeon for a couple of years. Fortunately, this made hearing the diagnosis easier for me to hear and I was confident that I understood the process of surgery. The surgery took five hours, longer than normal as the tumour had spread into my lymph nodes, 12 to be exact, which was a shock.
Radio iodine treatment was the part I was unfamiliar with. I sat in an isolated hospital room with a huge window for comfort. I was there for four days and felt quite sick in that room. I didn't eat much, just salt free bread rolls my mam had made. I watched a lot of TV and felt like I was on a boat as the treatment worked it's magic. My mam sat in the doorway during visiting, and cried as she left because we weren't able to hug. This was painful but necessary and we had a huge hug once I was able!
Now for the recovery, The main problem I have struggled with is fatigue. Something that has taken time to learn and been greatly frustrating. I remember telling my husband how frustrated I was and that I feared we would not be able to have children because I was constantly drained, sometimes to the point where I could not physically move. I would feel these episodes coming and have time to prepare; have a wee, pjs on, and a blanket on the sofa with a drink near by. Then lie for hours unable to speak going through the motions in my head of what I would like to say or do, down to the fine details. I'm sure people can relate to this!
Now fast forward, here I am five years clear! Since my diagnosis I have gotten engaged and married, bought a house, got a new job AND I have my daughter, now 18 months old! Looking back on my illness these are the things I remember, I will not let cancer define me.
To anyone going through this awful illness, you can get back to normal! I still suffer with fatigue but it is better managed and as long as I don't over do it I am generally fine.
I was diagnosed with an over-active thyroid in 2006. I hadn't really noticed I was ill until a friend of mine commented on how much weight I had lost. I had been trying to lose weight, but hadn't realised how much I'd lost.
So with other symptoms I'd been ignoring - sweating, the shakes, constantly on the toilet, feeling sick, I went to the doctors and discovered I had a very overactive thyroid.
I had high blood pressure (which I'd never had before), so they put my on carbimazole and the highest dosage of beta blockers my doctor could prescribe.
I was seeing a consultant for a what felt like years, but was only monthly. On about the third appointment I was going to beg for my thyroid to be removed. I was signed off work, couldn't go far without stopping for a break or sugar, constantly felt tired, drained and exhausted. I had depression also and had recently been made redundant so had no work, which I couldn't have managed anyway.
They said they would remove it (without me begging!). My operation was in 2007 near Easter - the surgeon was brilliant and the scarring is gone. I was in hospital for a nearly a week. My thyroid was very over-active and took some getting out and in the process it damaged the parathyroid glands, which I was warned it could do. I was drinking milk and taking calcium supplements for the week I was in hospital, I was like a pin cushion as they were taking my blood nearly hourly to check my calcium levels.
I'm on 150mg of levthyroxine for the rest of my life now and alfacalcidol (for the parathyroid) as well.
It was the best decision I made or my consultants made to have my thyroid out. It has now been 10 years since the removal and my levels are fine. I couldn't fault the care I had and still have now.
Each night is always just the same,
Lying here counting sheep.
Wishing, hoping, praying,
I would fall into a deep sleep.
I try to clear my mind,
Thinking of nothing but to snooze.
But nothing seems to help,
To the insomnia, i always lose.
Unfortunately this is only
One problem of thyroid condition,
Some of the other symptoms
Can make life a bit of a mission.
The joint pain, dizziness
And lack of concentration.
Weight gain, anxiety
And not to mention depression.
Remembering every morning
I must take my tablets,
Although after a while
This just becomes a habit.
Trips to the hospital
Another blood test,
When's my mind and body
Gonna get a deserved rest.
Trouble with thyroid illness
Is that its mostly unseen,
Hard for others to understand
And people can sometimes seem mean.
'Pull yourself together'
'Go out and get some air'
'Stop being so miserable'
It seems like they don't care.
Its hard to explain to them
Exactly how it makes you feel,
That this isn't someones story
But for you this is all real.
Always saying 'Yeah I'm fine'
When asked how you are
Not wanting to say
'Well i feel I've been hit by a car!'
I hope this helps people understand
Without getting really deep
I'll shut up now, lie back down
And count those bloody sheep!!
Since being diagnosed with Graves' disease (overactive thyroid) I've often wondered how long I've been affected by it. I have always been a poor sleeper, especially on Sunday night's. On occasions, I have been prescribed benzodiazepines - while they did help a little their effect was minimal. Two years ago I had an operation and they struggled to anethetise me...I don't know whether it's all connected. About eight months ago I started to lose weight and experience very high arousal levels and some nights had NO sleep at all. It was at this point I went to the doctors and the blood test revealed elevated ALT liver enzymes. It was thanks to the internet that I asked for my thyroid to be tested but internet reading has been a good and bad thing for me. I have not yet felt ill and feel that the worst aspect of the diagnosis has been fear. As an empathic person I feel for the people whose lives have been devastated by thyroid conditions but as my understanding grew so did my health anxiety. I have dry eyes and have worried considerably that my eyes would become more involved. Amongst other things I worried about how I would drive to work if I developed double vision. The wealth of information available is also scary.
I now take selenium but some of the self help information I've come across makes for a depressing read with no wheat, caffeine, alcohol or vigorous exercise..... I have always exercised consistently before and since the diagnosis. Within just three weeks of taking Carbimazole I could really feel the difference when running up hills. I swim against the clock and lift heavier weights now than I could handle 10 years ago. By anyone's standard I am a well person, fortunate to be in good health and still living life my own way. Rather than dwell on the possible demise of my future health I should be more grateful for what I have. I even sleep through the night now for the first time since....can't remember. Life is good.
Thyroid cancer in children
It was 1990 when I was just 11 years old when I had a lump biopsied whilst i was on the Ipswich Hospital's childrens ward. I remember the doctors told me that my thyroid was like a sunflower that was shedding seeds that were bad for me so it all needed to be removed. I also understood the conversation that they had with my parents about me having cancer in my thyroid gland.
I was sent to Addenbrooks Hospital for major surgery and soon had an operation to remove my thyroid gland, lumps and four other small lymph glands. The operation took four very long hours and I remembered they kept me sedated for the best part of four days.
When I woke I could hardly speak and couldn't look at my neck. The 10-12 inch cut which went from one side of my neck to other was held together by 3 stitches and a necklace made up of staples. Luckily the operation now is more advanced and the incision is usually only about 3 inches long.
After that I was to endure a round of radio iodine treatment at Addenbrooks and three more at a local cancer hospital in Ipswich. As I was so young at the time doctors were unsure of how to treat me and what doses I could have as they worried about how it might affect me in the long term.
It was hard as I missed nearly all of my first year of high school, which put me behind. However I caught up and my voice (though different) came back and my scar healed to a very faint line. When I got closer to 16 I had depression and did a lot of silly things as I had started to understand how serious my illness had been and so I had the chance to see therapists who helped me come to terms with it all.
I am happy to say I have now been in remission for 25 years and I'm a fully qualified senior hair stylist. I'm married with two lovely daughters aged 3 and 6 that I'm very proud of. I've been on 200mcg of thyroxine for over 20 years now. I'll always need to have yearly check ups at the hospital as they are still so unsure as to how I might be affected in the long term as i was one of the youngest people to have had thyroid cancer. So far though my life has been brill and I wouldn't change it for the world. My experience has made me the person I am today. I wanted to write this so that I may be able to help settle any worrying parent or child who gets diagnosed with this and to reassure them that you can still have a normal happy and fulfilling life after cancer. Beat it, don't let it beat you!
Rewind to just over a year ago and I was a happy, healthy mother of two; a stark contrast to the person I am today but ironically looking seemingly no different at all; bar the scar I now wear with pride on my neck. Suffering on the inside and looking ‘fine’ on the outside is often the case with hidden chronic illness.
I have been to more hospital appointments than I can count over the last twelve months, been hospitalised four times and lost and gained the support of many friends along the way. It all started with orbital cellulitis (take a look at the fetching photograph of me below). I have since suffered at the hands of cellulitis over twenty times due to having such a weak immune system. At the time we all believed I was just unlucky and happened to get an infection. I now know that adrenal insufficiency was the root cause.
April of last year I woke up with a huge lump in my throat, swollen tongue and flushed face. I went into work, being a secondary school teacher and taking great pride and enjoyment in what I do, to not go in was not even on my radar, but was swiftly told to go straight to my GP. My GP then sent me straight to get blood tests done as they suspected I had a goiter and thyroid issues. To keep it brief over the following six months I was in hospital twice (I now know I was in adrenal crisis) and misdiagnosed with anything and everything from MS to Cancer. My symptoms were debilitating and included muscle weakness, chronic fatigue, vomiting (sometimes blood), diarrhea, trouble with my breathing and heart palpitations that felt like I was having a heart attack; to name but a few! I had the tumour drained twice. It grew back twice. Each time bigger than the last and always within 24 hours. The only option left was major surgery to remove my thyroid and the tumour. This took place in December 2015 (some more fetching pictures included below). I was so relieved, as were my family. We thought this would be the end of it and other than daily medication I would pretty much be fine and able to live a normal life. We were wrong...
I recovered from the surgery pretty quickly and had a lovely Christmas with my family. However, my hormone levels were still all over the place and my symptoms were not subsiding. It was only when I was handed over to a new Endocrinologist that he noticed how low my cortisol levels were. He arranged for further testing which resulted in my diagnosis of hypopituitarism which causes secondary adrenal insufficiency and, if untreated, can be life threatening. Basically my pituitary gland, which sits in my brain and is the size of a pea, does not send signals correctly to my adrenal glands. These are two little objects which sit on your kidneys. Doesn’t seem that big a deal does it? But it is. Cortisol is needed to keep you alive. The longer you go undiagnosed the greater the damage to your body and the greater chance you have of slipping into a coma and worse still dying. Due to my adrenal insufficiency I developed Hashimoto’s disease and Hypothyroidism.
I am now on daily medication; my kitchen cupboard looks like a pharmacy. I am getting better but no two days are the same and you have to learn to manage your own illness, adjusting medication accordingly. If I get a bug, suffer a bereavement or visit the dentist I have to alter my dose. My journey is by no means over. I still have referrals coming out of my ears for one thing or another. The most frustrating thing is that because the illness is rare many, including medical professionals, do not understand it.
It does suck but life could be worse. I have a loving husband and two adorable children. I have the support of friends, family and my work place. I have learnt so much this past year about myself, others and adrenal insufficiency. I just hope my story helps to make others more aware.
People always call me Wonder Woman; unfortunately I do not have superhuman powers, I have adrenal insufficiency!
Looking back I always suspected I had thyroid problems. I was often cold, constipated with itchy dry skin. When my sister had to have a thyroidectomy 15 years ago, I asked my GP for a blood test, convinced I had a problem. The results were normal so I thought no more of it.
My first child was born in 2013 and many people commented on my neat, small bump. The baby was underweight but nothing out of the ordinary. Three months after the birth I started to get strange symptoms. I had what I can only describe as a ‘funny turn’, when I woke suddenly from sleeping with a jolt - it felt like my heart had stopped. I was out of breath from panicking, went to find my husband but couldn’t stand up as the muscles in the backs of my legs were shaking violently. I felt sick and dizzy. My husband suspected not enough food/ low sugar as I was breastfeeding so gave me lucozade and bananas. We called the off duty doctor and they concurred with low sugar. Afterwards I realized that this was my thyroid – postpartum thyroiditis.
After about a month I started to get more and more tired and slower in my thinking. I started finding it harder and harder with the baby as I was seriously sleep deprived from night feeds, breastfeeding and just trying to manage day to day tasks became a challenge. I remember my husband asking me ‘whats wrong with you- why can’t you cope?’ Nobody – even myself, thought it was a medical problem – just that having a baby was extremely tiring and exhausting but you just have to get on with it. So that’s what I did for another 4 months – soldiered on. I would go to bed at 7pm every night, and then waking at 7am would feel like I needed another 9 hours of sleep – I was utterly exhausted. The baby was crying 4 or 5 times each night – I never got more than 4 hours sleep at a time. I started napping in the day when the baby slept too. I couldn’t think straight – I was foggy in the head. Most days I was so tired I couldn’t form sentences properly and forgot words.
When my first child was 10 months old, my husband went away on business for a week and my mother came to stay and help with the chores and baby. I was suffering from dizzy spells by this time and my mum was having none of it – so marched me to the doctors.
My Doctor said he suspected anaemia and gave me anti sickness medication for the dizziness. He said it was unlikely I had a thyroid problem as ‘there was no way I could possibly be getting out of bed in the morning and be breastfeeding a baby’ if that was the case. However, he agreed to do a blood test to rule it out.
Two days later the GP called to confim I was anaemic and hypothyroid caused by postpartum thyroiditis. He was pretty shocked and told me to stop breastfeeding right away.
My mum helped to resolve the baby crying at night using the crying it out method. It was very hard hearing her cry for hours but after a week she stopped the night waking and just slept, which meant I could sleep finally.
I started iron tablets and Levothyroxine at 75mg daily. It took three months for the fog to lift and for me to start feeling more normal.
After about nine months, I spoke to the doctor about having another baby. He warned that it might take a long time as my fertility would be affected. Luckily it took a few months and my Levothyroxine dose was increased straightaway to 125mgs. I was referred to the endocrinologist at my local hospital and had to have 6 weekly blood tests and meetings with them throughout the pregnancy. My Levothyroxine was increased at about 6 months to 150mgs.
My second baby was much heavier despite being three weeks early. I tried to breastfeed him but he wouldn’t latch, so I expressed milk for him for 6 weeks, then my milk supply just dried up. Another blood test confirmed thyroxine too low, anaemia and my kidneys not functioning properly so I was advised to stop expressing and feed the baby formula milk.
Since then my blood was tested every six weeks until it settled at 100mgs. I managed to lose my 12kgs of baby weight through hard cardio exercise and a restricted diet. It was very hard but I am very glad I am back to my normal weight again.
About 6 months ago I felt tired in the mornings and wasn’t thinking clearly – I suspected I was under medicated. The blood test confirmed this and levothyroxine was increased to 125mgs. However, the next blood test was too high, so I now have to take 100mgs and 125mgs on alternate days to try and get the exact dose I need.
I am getting better at spotting when my thyroid level is low or high, now that I have had it for a while. Apparently most women’s thyroids return to normal after childbirth but the doctor thinks I will have to manage mine for life. I do worry about the long term potential complications such as cardiac disease and angina. It is annoying having this condition, tablets everyday, blood tests and still some symptoms despite medication to make me ‘normal’. I am very lucky that its not cancer and that although it wont get better it’s probably not going to kill me either.
Thyroid Eye Disease
I smoked for no more than 10 years from late teens. I smoked because I thought it looked cool and I was insecure.... they were a social crutch. I gradually became very dependent and at its worst I would smoke between 20-40 a day. Most of these were in the evening with an alcoholic drink or during the day with a coffee. They were social times. A lot of my friends smoked. I tried to give up many times but there was always a justification why today I needed to have one... just one! And then I'd slip back into smoking again. Then I met someone who would become my husband. He didn't smoke and wouldn't put up with it. I had a choice... cigarettes or him. I wanted children. Cigarettes or them and their health. I finally recognised that I was an 'all or nothing' person... I couldn't cut down or have just one. So, the only way to stop was 'cold turkey'. I had to stop all the associations i.e. coffee and going out to pubs for a while. I thought I was going to die in the first week due to caffeine and nicoteen withdrawal symptoms... but that made me stronger in a way as I realised what a hold they had on me and I didn't want to be weaker than either of these two! I didn't want to be defined by them... I was more than they!
In short, I had a buddy to encourage me, a goal, willpower and breaking associations which all helped me to quit. I didnt use substitutes like gum/patches... just the enjoyment of being free, sweet smelling, saving money and helping everyone's health!
Twenty years after having quit I was diagnosed with Coeliacs Disease and hyperthyroidism and within a year, TED. I was fortunate that my TED was very mild and treated quickly with selenium so very non-invasive. I had two grandmothers who had both smoked and both had hyperthyroidism and one had quite protruding eyes from TED. Neither of my parents smoke and neither had thyroid issues. My sister never smoked and so far doesn't have thyroid issues. I was unaware until I had thyroid problems that my Grandmothers had the same condition. I do wonder - if I had been told by a doctor that, due to my family medical history of auto-immune conditions, smoking would increase my risk of TED even in twenty years time, then I may have never smoked.
For further information see TED and Smoking: Information for Patients
Before doctors understood the endocrine system and developed medicines for thyroid disorders I would have died around the age of 46 years. Now in my 70’s I recall living life in high revs in fifth gear in the 1980’s thinking that was normal. For me anyway! One morning before leaving for my teaching job (and later on reflection) I counted twenty two tasks that I had done in preparing for the day and preparing my husband and our four children for theirs. The fact that I never needed many layers of clothes even in winter were signs of something but reasons could always be found for life as it was.
Thyroid disorders like lots of other conditions were not heard of as they are today so I never considered having any part of me malfunctioning. It wasn’t until I was sitting in front of the bedroom mirror looking at the wrinkles on my neck (which incidentally did not exist as I now know, as I really have them now), when I saw an egg shaped lump on the front of my neck. My parents were staying at the time and reacted to the lump by saying ‘your grandma had a goitre .You had better see the GP’. I had never heard this about my maternal grandma before.
I consulted the doctor within a couple of days who checked my pulse which was 86 and I had a hand tremor. I must mention that my pulse was normally 56 as I had taken up running for fitness when I was 35, I was now 45. The doctor referred me to The Christie which was in my local area. I was seen two weeks later by a wonderful consultant whose name, unfortunately, I cannot remember, which is strange to me because I can remember every other minute detail of that day - what I was wearing, the consulting room, the scan room etc etc . The consultant arranged a scan so with a short walk to the scanner, a short scan and a vivid print out of my thyroid. It was obvious that it was hyperactive as was I. I walked straight back into the consulting room, no waiting, where Dr. ? described my condition as Graves’ Disease. I was given three options:- an operation to remove some of my thyroid, medication, or radio active iodine. I have always had and still have the utmost respect for the medical profession so I asked for his recommendation. He favoured the third option and saying he had a quiet day. He phoned ahead and actually walked with me through part of the grounds and part of the hospital taking me to a room where I sat behind a screen, was given a tumbler with a centimetre of clear liquid in it and was instructed to drink every drop with a straw…….and that was it….I walked out within half a day of walking in. As I had had no qualms I had travelled alone but on driving home the enormity of what had happened hit me and I broke down in tears when I stopped at traffic lights. A normal reaction perhaps, but with hindsight there was no need for upset.
At home, life was completely normal except for having to stay off work for four days as I worked with under 5’s, and having to take 150mcg. thyroxine daily to keep me alive. Initially I had two-weekly checks and since I have had six-monthly check ups on my thyroxine levels. In the late 1990’s my medication was decreased from 150mcg to 125mcg daily and recently to 100mcg daily. These check ups, and having to take medication for the rest my life, ensure that my body, particularly my heart (I think!) and my life are not affected by having Graves’ Disease - or have I still got it ??
I have led a very active life, raising four children, helping with 10 grandchildren, teaching full time until retirement and being an active, competitive orienteerer since 1977. Orienteering has involved competing most weekends at home and abroad, it has kept my mind and body active, brought me in touch with many, many people I would not have met otherwise and it is a sport that I would recommend for young, old, fit or unfit (although a certain level of fitness helps) and particularly families.
I can say that my thyroid has not affected my life style in any way so maybe I was lucky. I have lost some of my eyebrows, my pubic hair and gained a little weight recently but otherwise there are no signs that I have one of the twelve illnesses that have entitled me to free prescriptions. I do feel that immediate action on discovery of an abnormality and the efficiency of the NHS made my outcomes so positive and enabled me to live a completely normal life.
Rae talks about her experience in a BTF film on hyperthyroidism.
After my diagnosis I felt very angry and bitter about having a life long condition and having to take tablets for the rest of my life, just to feel ‘normal’. I realise now that I was grieving for the person that I used to be and coming to terms with the fact that I would have to ask for help just to feel better. Despite having the most supportive and understanding family, no-one knew what I really felt like. I had never felt so alone.
I didn’t tell anyone outside my family how I was feeling. It is difficult when the first thing you think of on waking in the morning is ‘I can’t wait to go back to bed’. I pushed myself to keep looking and behaving normally. I had a family to feed and look after and I was involved in lots of activities. Some days my energy would suddenly sap to a massive low and I’d have to just stop what I was doing - too exhausted to even finish cooking a dinner.
I was miserable, had no interest in my lovely garden or even cleaning the house, let alone anything that I used to enjoy. I went about my day, going through the motions but not really being there. I didn’t care and I wasn’t bothered. What I did care about was the fact that my clothes were becoming too tight and despite a good diet I kept on piling on the weight until I was 6kg more than I had always been.
I had ‘brain fog’, I couldn’t concentrate for very long and my memory was dreadful. Sometimes I would stop speaking in the middle of a sentence because I’d forgotten what I was saying or couldn’t remember an everyday word. I was always cold - my husband and I would have the battle of the thermostat every evening. My skin was so dry that I had to ‘stick’ it down with a good moisturiser, all over, every day. My nails were weak and flakey and I had agonising cracked heels. I regularly lost patches of hair on my eyebrows. I struggled with accepting my appearance. I didn’t sweat so I used to feel faint on exertion in hot weather. I learned to take artificial sweat (a bottle of water) with me to splash on my arms, shoulders and neck to do the cooling job for me. I just thought all these symptoms were normal for me and never really questioned them or linked them in any way.
I was miserable and bad tempered a lot of the time. My cholesterol level had started to rise. Some of my vitamin and mineral levels were rock bottom. I couldn’t sleep at night and some of my joints constantly ached, elbows, neck, shoulders and ankles mainly.
Worse still was my hair started thinning - it came out in huge amounts when I combed it. After having thick glossy hair all my life its condition changed to dry and brittle. I was so upset that I felt physically sick when I looked in the mirror so I didn’t for six months and didn’t visit a hairdresser for two years. I was horrified at the thought of losing my hair.
I decided to focus my energies away from feeling sorry for myself and into getting well again. I wanted my life back. I started researching thyroid conditions and was amazed to find that others with an under-active thyroid had the same symptoms. By chance I came across the BTF website and saw that there was a Milton Keynes support group, the nearest to me, living in Northampton. I telephoned the group organiser Wilma who listened to me. I was overwhelmed with relief and burst into tears. Going along to the support group was a real boost. Firstly, I was delighted to see that none of the ladies at this meeting were bald! There was hope! Co-incidentally the speaker at that meeting was a trichologist and was there to talk and answer questions about hair loss related to thyroid conditions. Secondly, I was able to speak to people who had been or were going through the same experiences as me and who were happy to share their stories and successes.
During my research I discovered ways in which to work with my GP to enable him to treat me and my symptoms, not just a blood test result. We tailored my treatment to be optimal for me. It has taken time, with gradual increases in my levothyroxine, regularly checking my FT3 and FT4 as well as the TSH levels to find the optimum levels for me to feel well. He also carried out further tests for other common problems suffered by hypothyroid people such as low iron, low ferritin levels, low B12 and vitamin D, all of which I was deficient in. I was treated for these deficiencies, which helped me feel much better. Getting my iron levels back up slowed my hair loss. I’m delighted to say that my hair is in much better condition, doesn’t fall out so readily and new thick dark hair is growing back. Result!
The other thing I wanted to find out more about was diet. I decided to see a nutritionist. She gave me information on how to eat well and healthily incorporating all food types. Gradually, my energy and enthusiasm for life has returned, my weight has gone back to normal. I go to the gym at least twice a week for tough and fun classes. It was almost a eureka moment when I broke a sweat at the gym for the first time ever. I took part in a 12 kilometre, 50 obstacle Iron Run in March with my colleagues. The training was hard and the run was harder but I felt so pleased that I’d risen to the challenge and for me it was ‘one in the eye for hypothyroidism.’ It wasn’t going to stop me living my life.
I’ve also helped out at public events for the Milton Keynes branch of the BTF. I love speaking to individuals to raise awareness of thyroid conditions and giving sufferers hope that with the right treatment, they can feel better too.
Since the start of my treatment with levothyroxine it has been a roller coaster. It was only after my fourth increase of levothyroxine that I found my optimum level that allows me to feel normal. I make sure I exercise regularly. I make sure I eat well and I take my medication correctly. I stay positive. This is what works for me.
I know that it isn’t a ‘given’ that I will always feel good, and that my hypothyroidism symptoms will come and go. I know that I will always have to keep on my toes and be able to recognise when things are not quite right and to deal with them or adjust my treatment if necessary, but now they are all just little things and I can cope.
More than anything I’m warm, I have hair, I have enthusiasm for life. I love life! I’m in control, I’m happy – I’m back!
Alison talks about her experience in a BTF film on hypothyroidism.
At five days old I was diagnosed with congenital hypothyroidism which meant that I wasn't growing and developing properly. My parents worried about me everyday as they didn't know what to expect and how to deal with the symptoms I was going to face.
I have spent many days in hospital, had over 30 blood tests (in my life) and have struggled to fight through illnesses that I have faced, but, now I am 16 and I have been through a lot in my short life. At the age of five, just after my grandma and grandad sadly died, I suddenly got quite ill, I was rushed to the doctors to find that I had shingles. This meant that I had to have more tests and I spent around 2 weeks in hospital as they were worried about my heart.
I had my medication upped and this caused my heart to beat irregularly which meant that I had to spend more time in hospital.Now I am 16 I am able to manage the daily struggle I have with the support of my family and friends, but I do find it hard to tell people how I feel about it and what it is really like to have it. The only person I can really relate to is my younger brother who also has hypothyroidism (who was diagnosed three years after me when doctors said there was only a small chance that my mum would have anymore children with it) we are able to really relate to each other as we are going through the same struggles each day and I think this has made our relationship really strong.
I used to find it hard to tell my friends what is wrong with me as I though that they would find it weird and not want to be friends with me.
Both my primary school and high school have been really supportive ( they even let me have nap time at 12 years old), I have recently finished my GCSE exams and I am looking forward to moving on and living my life, even if it does mean regular check up and more blood tests.
I hope that one day people are able to get more support for hypothyroidism and it becomes well known in society.
Having cancer has made me realise how lucky I am. And I don't mean that I am lucky because I got cancer. I mean that I am lucky because I am alive. Not many people will understand this concept and how I can say that I am lucky to be going through this. As crazy as that sounds and as unlucky as I may feel at times and as sad as I can get on my hard days, I need to think, I am alive. I have a purpose just like everyone else in this world. I have goals, and a meaning to life. Having thyroid cancer does not define me. It has made me realize how blessed I am. I am blessed to have people to help me through this. And people who love me and want the best for me. I am blessed to be able to forge forward and fight. I am blessed to be able to wake up everyday.
When I found out that I was able to beat this it really made me think about the people who can't get through cancer and who fight so hard but sadly lose their lives. I wonder how is that fair? I have had so many emotions about this whole experience but I have more emotions about the people that can't be helped. Going to countless doctors and cancer hospitals made me realise how real this is and how tough those cancer fighters are. When I found out I had cancer, I cried and cried and cried. I cried because this was happening to me, but I also cried because I could get through it. I cried for the people who could not get through it and who had to lose their lives to this disease. I cried for their families who had to watch their loved one struggle. I cried for my health because I have fought for it multiple times. I cried for my family because no parent should have to see their daughter in pain. I cried for my future because I want to be healthy more than anything. I cried to stay strong, no matter what.
We are all put on this earth to have a purpose and to fulfill that purpose. We all want to be happy and live a long and healthy life. Sometimes things don't workout the way we planned. Sometimes life gets in the way. Sometimes we find out we have cancer. But you know what? Life doesn't stop, and neither should you.
People fight everyday and sometimes we really don't know what a person is truly going through. You have no idea what people are thinking and the obstacles they face. So don't be too quick to judge. Everyone is dealing with a battle of their own. But if you let it consume you then you allow it to win. Accept your struggles and find peace with it. You are lucky that you are alive and that you can fight for another day. Smile at everyone you meet and do not let anything get in the way of you living your life to the fullest. You deserve all of the happiness that this world has to offer.
Looking back I guess I was probably hyperthyroid for many years as I have always been the thin one and still am in a family of large people and was always on the go and not being able to sit still, even as a child. And then in the summer of 2006 living in the Essex part of London when I was 47 things really came to a dramatic head.
I started to feel groggy, faint and light headed and nauseous that increased leading to constant tiredness and fatigue with bouts of hot flushes and night sweats that became a stream of rivulets running down my back. My heart rate increased (tachycardia) and sleeping became interrupted and uncomfortable. I thought it may have been something viral or diabetes or complications from an old spinal injury that has plagued me over the years. After putting up with these symptoms for a month I saw my GP who ordered a blood test and told me to stop drinking herbal (mint tea) which apparently has some of the above as side effects.
The thyroid blood test showed significant raised FT4 levels and the TSH was so low it was at the double minus side of the decimal point. Because of the classic thyrotoxic symptoms I felt like an express train running out of control and not being able to rest resulted in a kind of obsessive compulsive disorder in so much that I became so restless that any incident at home however minor became a big issue, if something dropped on the sofa then even though late at night I had to put the whole sofa cover through the washing machine. I was used to leading presentations to large groups of people in the past and was a reader at the local church but it got to the point were I was simply unable to perform any public duties due to the severe anxiety / panic attacks that I was totally unable to control so I was immediately prescribed carbimazole and a beta blocker (propranolol) to stop the tachycardia and to calm me down.
It took a further three months until my endocrine appointment took place and little did I realise that I would be in this for the long haul over the next few years with very frequent appointments at my local hospital which at least to some extent was reassuring to have regular specialist contact. Initially, nuclear medicine thyroid uptake and ultra sound scans took place with a gradual weaning down and off the propranolol. The scans confirmed an over activity of the thyroid gland and for six months my TSH levels on carbimazole ranged from very high (63) to (21) on reducing doses putting me in the hypothyroid zone.
During the summer of 2007 I noticed my right eye had become noticeably larger than the left. It had been feeling gritty, itchy and was tearing in the wind. I guessed this was the onset of mild thyroid disease but my endocrine consultant said not and put the tearing down to a "hormone imbalance". Not convinced by this I had my GP (who was very supportive and let me take control of my condition) refer me to Moorfields Eye Hospital in London.
The local hospital tried stopping the carbimazole for two months but the thyroid very quickly started speeding up again with its associated symptoms and so a long period of block and replace treatment was started that would last 18 months with regular thyroid testing. Despite 5 attempts at titrating the carbimazole / levothyroxine doses my TSH was always in the hypo zone (28 down to 8). During this period I had a TRab (antibody test) that is one of the tests that can confirm Graves disease and so my endocrine consultant conceded that I had mild TED of the right eye.
Very soon I started to empower the condition by reading all I could find and becoming a member of the British Thyroid Foundation (BTF) who are the definitive organisation / charity when it comes to all things thyroid and as a member enable access to medical experts to answer your questions. The BTF website is the only place I look to for information and the latest news.
Even though my TED was unilateral and mild it is important to monitor at an eye hospital and through good practice keep under control. I am intolerant to any eye drop with preservatives so you can request / insist on being prescribed single dose preservative free drops that make a huge difference. After trying different types I settled on Clinitas (sodium hyaluronate) which certainly helped with any dry eye issues but I still hated going out when it was cold and breezy as the eyes would drip, drip, drip! And one does become self conscious about having a change of appearance and always wiping your eyes in public and this can and did lead to some extent to becoming anti-social and not wanting to meet people and hating having a photograph taken.
After 18 months of block and replace it was decided that I should stop this treatment and see if the thyroid had either burnt itself out or returned to normal. For the next 6 – 8 months all my TSH results were normal but as with the majority of patients hyperthyroidism kicked in again taking my TSH level to being very "off the scale" low at 0.01. And so it was decided to go back on carbimazole and propranolol and the next 8 months saw various reducing titrations fail to normalise my TSH levels. And so every few weeks I continued to shuffle between my local hospital for endocrine appointments and Moorfields Eye Hospital in London.
In the summer of 2010 after a full 4 years of medication treatment and a full case review I was offered either a thyroidectomy or Radio Iodine Thyroid ablation (RAI). Having an aversion to surgery and following advice and set protocols from Moorfields Eye Hospital I opted for a course of precautionary steroid prednisolone just in case the TED happened to go into overdrive following RAI and then in November 2010 proceeded to wander into the realms of what seemed like science fiction at my local and brand new dept of Nuclear Medicine.
Compared to surgery and its risks and a hospital stay the Radio Iodine treatment simply involves swallowing a standard size gelatine capsule. Ten minutes later and off home you go albeit to a regime of moderate confinement for a couple of weeks, great and a good excuse if you are feeling antisocial. Once the thyroid has been ablated by the Radio Iodine, almost immediately you become 100% hypothyroid which is permanent but at least you don't have to pay for your prescriptions.
I had a couple of follow up appointments with the endocrine department but by the autumn of 2011 was discharged after 5 years to the care of my GP. Because of my mild TED it was recommended that thyroid blood tests are carried out every 4 months and this is still the case today and overall it did take some time and adjustments of levothyroxine to find the correct dose to keep me in the normal zone. This is when you need to take control and see how you feel as well as looking at the dosage. For me 100mcg of levothyroxine was too much and 75mcg to little so I have a regime of 100mcg (Mon – Fri) then 75mcg (Sat – Sun). A lot is said and written about when to take levothyroxine and how it reacts in the body. I have adopted the method of taking the pill during any of the night time hours by keeping it in a tiny plastic cup at the bedside (a plastic screw bottle top is just as good) thereby avoiding getting up and having to wait an hour before breakfast, tea or coffee etc. It works for me.
One of the drawbacks I encountered on this long journey was a lack of continuity as over the 5 years and 20 hospital appointments I saw no less than 14 separate consultants, registrars and doctors so each time we had to start the consultation from scratch so its important to keep a record of your visits and I devised my own medication dosage table with its corresponding thyroid blood test results.
It is worth noting that different GPs can have differing prescribing protocols. One GP would allow 3 months supply of levothyroxine another only 1 month but my latest will allow 2 months which is how it should be.
Another cautionary tale is if at all possible when it comes to TED always get a referral to specialist eye hospital that knows how to manage TED. My experience of a local / regional ophthalmology hospital department was very worrying with its lack of knowledge and its worth putting up with the extra travel to a renown centre. As we moved home a couple of times I was under Moorfields in London, Addenbrookes specialist Eye Department in Cambridge who have a dedicated TED specialist who is quite amazing and runs a weekly TED clinic and addresses the local BTF patients group and I am know back in my hometown of Liverpool and its world famous St. Paul's Eye Centre.
Graves disease is one of those mysterious conditions and in my case the best guess is that the antibodies that attacked the system may have been lying dormant for many years following Scarlet Fever that I contracted in the 1980s.
An interesting, unusual and welcome outcome is when at a local ophthalmology clinic in Norfolk I was given an appointment in the diabetic / glaucoma clinic because there was no other consultant who knew about TED. And with no conclusive diagnosis other than a field test anomaly was sent away clutching some glaucoma eye drops despite having normal eye pressures, to take as a precaution. I am very myopic with elliptical shaped optical discs and I must have proved to be somewhat of an unusual patient. But after taking travatan then its preservative free version Monopost my dry eye symptoms that have bothered me these last 8 years have been "cured immediately". I no longer tear and am able to face those cold blustery winds directly in the face. After checking this out with my TED consultant this has become a bit of a discovery and I continue to administer one single drop of Monopost last thing at night and that dripping dry eye has vanished.
So yes I been through the mill and resurfaced and learned so much over the last decade. I still have my four monthly thyroid blood tests and attend outpatients at the eye hospital every few months for monitoring but to date and following a recent 2014 MRI of both eyes, thing's have now stabilised. Hypothyroidism is a forever condition and there are days when the energy levels dip and fatigue and tiredness take over and the usual cold hands and cold feet effect but it is a very manageable condition.
The best and simplest analogy I was given to explain hypothyroidism is likening the thyroid gland to the carburettor (fuel injector) in a car engine. Thyroxine is the fuel (petrol) that is needed to get you moving. Accelerate (push) when needed and brake (pull) when you need to slow. Being hypothytroid means you are unable to accelerate and brake naturally on demand as the levothyroxine dose circulates at pretty much a constant rate of speed so some days your energy levels dip (tiredness and fatigue) and some days you may have some energy in reserve and its up, up and away!
If I could summarise what helped me then the following is it:
- Make a table or note of all your blood test results from the beginning
- Empower the condition (learn all about it) from the BTF or join the BTF
- If possible form a good bond with your GP who can be very supportive
- Don't rush into surgery, consider all the options.
- When TED is diagnosed get / insist on a referral to a nationally recognised Eye Hospital or Department that specializes in TED. It's worth travelling the extra mile, believe me!
Six stone is the amount of weight I had gained in a year and a half from the medication I was put on to treat my Graves' disease. Entering high school, this physical and hormonal change my body was going through had me feeling depressed. I was losing my hair, eating more, and feeling completely worthless. I would have anxiety attacks before going to the doctors; it became routine for my weight to be the topic of discussion rather than my thyroid health. Finally, the doctors decided my underactive thyroid was not reacting well to the medication I had been taking for months and therefore had radioactive iodine therapy treatment to remove my thyroid. I was put on a replacement synthetic hormone medication that I would have to take for the rest of my life. I was completely fed up with my health at this point.
I decided to weigh myself after the ablation of my thyroid. I felt disgusted when I looked down; I weighed 16 and a half stone, an unacceptable weight for even a grown man of my height. I sat down on my couch thinking to myself that my obesity was holding me back from everything I wanted in life. I wanted to be confident when I went to school, I wanted boys to like me back, I wanted to try out cheerleading. I decided there and then that I had to take responsibility for this weight gain even though it was not my fault.
It started small and simple. I began to eliminate the obvious 'bad foods' from my diet. I gave up fried foods and soda pop. I did not want to become a health freak, but I decided it would be a good idea to eat only the healthy options when I went out to restaurants also. I slowly started to realise that eating fruits, vegetables and healthy grains were actually appetising and became my preferred dishes. My family did not support my newest obsessions with Brussel sprouts and avocados, so I had to do a lot of grocery shopping for myself. I still enjoyed my bagels and cream cheese; I just started to enjoy more wholesome nutritious foods also. To my surprise, my new healthy habits started to fog my depression and self-worthlessness. In fact, I started to lose a few pounds. My thyroid doctor even smiled at my next visit when she noticed that my 'off the charts weight' was now on the chart. She told me she was so pleased with me and shared my weight loss with her colleagues. For the first time I felt proud to be weighed. I started to gain a little bit of confidence. I wanted to continue to lose weight, so I started to research the subject of human nutrition. I bought several books and committed a lot of free time to reading research studies about weight loss. It was easy to understand that a magical pill or shake was not going to rid me of the excess weight I was carrying.
I started to value my body and health in new way. For the first time in my life I felt that my body was important and taking care of it through proper eating was mentally healing. I no longer craved macaroni and cheese and fried buffalo chicken sandwiches (my previous favorite foods). I started experimenting with new ingredients and flavors; cooking became a new hobby of mine. I also began doing a lot of physical activity that I found enjoyable. I do not like to do vigorous activity so walking the neighborhood, yoga, and dancing to music videos became my preferred ways to work out. I steadily lost anywhere from 2-4 pounds every month for roughly three years. My confidence began to escalate, and it became so clear to me that food was playing a new kind of role in my life. Not for comfort or boredom but rather as a tool for keeping my body alive and vibrant. I never went on a 'crash diet', used any kind of diet pills, or bought exercise programs or gym memberships. I simply lost weight in the most natural of ways; through feeding my body what it needed and being more active.
Looking back now, I could not be happier with my decision to embrace my health. Losing weight for me was not a task, but rather a journey. A life changing journey that has affected me physically, mentally, and emotionally. It may have taken me three long years, but I am glad for that. I have so much appreciation for my life now. I am not that person on the couch crying. I view life differently; I am more confident, happy, and now 80 pounds lighter then I used to be. I combatted high blood pressure, depression, and obesity through corrective nutrition measures. I cured myself because, well who wouldn't want a quality life to live. I wanted to be confident, have boyfriends, and be a cheerleader... and guess who made the cheerleading squad senior year of high school.
Partial Thyroid Hormone Resistance Syndrome
I have a relatively unusual thyroid condition called 'Partial Thyroid Hormone Resistance Syndrome' (PTHRS) when the body's tissues are resistant to the effects of thyroid hormone. Normally, the thyroid gland produces a hormone abbreviated as T3. This is converted in the body to T4, which is the active version, and which controls the rate of growth and development of the body. The Pituitary Gland detects the amounts of T3 and T4 in the body and also assesses the amount required. It produces a hormone TSH that stimulates the thyroid gland, and if the pituitary gland detects too little T3/T4, it increases the output of TSH until the correct level has been achieved. Conversely, it will reduce TSH if it detects too much T3 / T4. In PTHRS, the body resists, and effectively fails to recognise T3, and so the Pituitary gland responds by producing high quantities of TSH, causing the thyroid gland to work overtime, become large, but still not produce enough T3 since most of it is not recognised.
The symptoms of this are the normal symptoms of thyroid deficiency, combined with an enlarged thyroid gland, and high levels of TSH and T3. In my case, the condition is partial, which means that if T3 levels are increased artificially (by tablets) to a high enough level, the body starts recognising it, growth, development and normal thyroid symptoms can be achieved, but TSH is still high, and the substitute thyroid dose is quite high (now 175 Mcg per day, reduced from a high of 250 Mcg per day l-thyroxine).
I am the youngest of three brothers, born in 1945, 1947 and 1949. My eldest brother has the same condition, and this was considered sufficiently unusual to be reported in Lancet .
My middle brother has no thyroid (or other abnormality at all), and neither did either parent, except for my mother who encountered a late onset but 'normal' thyroid deficiency at about 70.
My three children also have no abnormal thyroid conditions.
I underwent a partial thyroidectomy in June 1976 at the Radcliffe Infirmary, Oxford. Although I know that I demonstrated some of the normal symptoms of thyroid deficiency, the main symptoms that prompted the surgery were constriction of the airpipe, associated with a very irritating and persistent dry cough. The symptoms were most pronounced when I was under stress – at the time this was doubted by doctors, although I have seen references to this in recent issues of BTF news.
Because the operation was nearly 40 years ago, I cannot remember too may details. However, I recall being content with the briefing and preparation before the operation, that it was successful (see later), and with the aftercare. The first day or so after the operation was uncomfortable, but not, as I recall painful. I believe I lost quite a lot of blood, so was on drips for several days. The most uncomfortable part I remember was having the clips taken out, but they were effective in leaving a very unnoticeable scar (some 4 – 5 inches). I had a stiff neck for several days, and some lack of volume if I tried to shout. I think the latter has been long-lasting, but as I don't shout much anyway, I am not sure.
I have needed no further surgery or other treatment, other than adjustment to dosage. With a few minor exceptions, I have had no recurrence of the airpipe constriction or the cough. Having read several of the letters from thyroid patients in BTF News, I feel quite fortunate that my symptoms have been relatively minor before surgery, and virtually absent afterwards.
I attend the outpatient clinic at Oxford Radcliffe / Churchill about once a year. In around 1980, the then Registrar, Dr O'Rahilly finally diagnosed the specific diagnosis (Partial Thyroid Hormone Resistance Syndrome), and tested me on a variety of dosages for several weeks each to find the optimum (i.e., 150 mcg per day, 175, 200, 225, 250, 275, 300). The conclusion was a dose of 250 Mcg per day, which has continued (with recentish reductions to 175 mcg) until today.
It was pointed out that this was, in some respects, a 'least bad' dose, in that my TSH level is somewhat higher than normal. This can have its own adverse effects, in particular on blood pressure and on thinning of the bones (potential osteoporosis), also possibly on diabetes. Whilst working, my life style (exercise, diet) was not ideal, so the raised blood pressure and contracting Type 2 Diabetes may be due in part or fully to that rather than to the raised TSH. However, I take Calcichew (2 tablets per day) to build up the bones, and bone scans every two years show that the original thinning is now stabilising and possibly improving.
I was born at the Radcliffe, and have attended it as both outpatient and inpatient all my life. I wouldn't wish my condition (or any other) on anybody, but if you've got to have it, I consider that the Radcliffe have treated me professionally, successfully and considerately all that time, and I have full confidence in them.
For a number of years I had visited my GP complaining of feeling tired. Initially I thought it was probably just me as I have a very busy job working as a Training Officer which involves continual early starts and a significant amount of travelling. Added to that the actual training itself and family commitments was it any wonder I felt the way I did.
My GP was always very attentive and I was never made to feel I was wasting his time. On several occasions he sent me for blood tests. The results either showed I had sub-clinical hypothyroidism, or, after following this up a few months later, that my TSH levels had returned to normal. This happened over the course of several years which in many ways was quite frustrating. Should I have treatment at this stage or not? I was also experiencing very cold hands and constipation. My GP thought not but agreed he would monitor the situation and stated I should see him if I continued feeling unwell.
The amazing thing was in 2007 I made the decision to try and lose some weight. Following a visit to a dietician and seeking advice, I started to eat more healthily and also increased my exercise levels. By 2010 I had lost 5 stone which was unbelievable considering I had never been able to shed any weight on previous occasions and was told at one stage that I had polycystic ovary syndrome which makes weight loss even more difficult. During this time I also had to have a hysterectomy, which slowed me down for a while, but I soon got back to enjoying exercise and discovered a love of walking and the outdoors. Having lost all that weight I was determined to keep it off and to this very day that has been the case give or take a few pounds.
In 2012 my mum was diagnosed with two secondary brain tumours and her condition was terminal, within four months of diagnosis she sadly passed away. Throughout the last few weeks of her life my dad and I cared for her at home and towards the end I began to feel totally exhausted. Once again I thought it was due to all that had happened and being emotionally drained. After visiting my GP and following a blood test it was discovered on this occasion that I had glandular fever – surely this was something I should have had in my 20's not in my 40's!
During 2013 and 2014 I continued to have blood tests to check my TSH levels only to find once again I was sub-clinical. However, in April 2014 my TSH were somewhere around 8 mU/l. My GP suggested a re-test in July when it was discovered the level had shot up to 21.8 mU/1. So in July I started to take 50mg of Levothyroxine and was reassured when my GP said, 'very soon you will feel like a new woman'. I can't say this has quite been the case. I think I feel a little better although shortly after taking the tablet I felt worse which I understand can happen. My TSH levels have recently been checked and they are well within the normal range so I will continue to take the 50mg and hope that long term I will feel like a new woman!
I did become concerned about weight gain, but I am sure that because of my motivation and total change of lifestyle that I will continue to keep it off.
I recently attended a local group meeting in Milton Keynes. This was very beneficial as I was able to meet other people, ask questions and also listen to how others manage their condition. It was also an opportunity to find out more about BTF organisation. It's like everything unless you know where to go and who to ask you are unaware of the work that goes on behind the scenes.
I was diagnosed with an overactive thyroid (hyperthyroidism) back in 2006, when I was 47; and what a journey I've had. At first I didn't realise there was anything wrong or that I even had a problem. I was starting to lose weight approximately in 2004 although it could be longer it's difficult to pinpoint when it actually really started, however, nothing wrong there I thought I needed to loose a few pounds, but the good thing was, I could eat anything and as much as I wanted, cooked breakfasts, doughnuts and chocolate, great. Not that I actually ate mounds, but I was still losing weight. I know that seems crazy to think that now, but I was rushing around like a teenager and I put it down to being busy and on the go all the time. I had bags of energy and never really felt tired, not even my young boys could keep up with me.
I had a very hectic and stressful job, but I also had loads of pastimes, I volunteered and I did amateur dramatics. I could also stay awake all night and not feel tired - people always said where did I get the energy from? However, my family and friends started to get concerned and notice symptoms, which included, shaky hands, weight loss, bulging eyes, and sweating more. Then I started to notice my heart was racing most of the time, I could actually feel the heart palpitations. However, it was only when I saw some photos of myself, that I realised how gaunt my face looked and how my clothes were even hanging off me; and then I started feeling anxious about things.
Even then, it was only because of my family nagging me that I decided to go to my doctor. As I was describing the above symptoms he started to write a prescription for carbimazole and a beta blocker. My heart was well over 150 just sitting in his office. He said that he thought I had an overactive thyroid, which proved correct; and that itself was quite a shock.
I started going for blood tests every 3 months and came under a consultant at my local hospital. After going through 3 years of altering my drug dose (carbimazole) up and down every 3 months, my consultant said that it would be a good idea if I went for radioactive iodine as this may help in the long term to stabilise me. So taking advice from my consultant that's exactly what happened, I went to hospital and had the iodine treatment. There's another story itself, maybe another time for that!
Unfortunately they gave me too much iodine, and I then went the other way; and I became very underactive (hypothyroid) just my luck.
Here now starts a whole new chapter, I started putting on weight, however, after the first few months after the iodine I become very low in my moods and became extremely tired, in fact there were times I just didn't want to get up and go to work. I actually had 5 weeks off work with stress and depression, I hadn't been told about this, and it hit me quite hard. This was a very tough period for me and it's only in last 18 months, that I've started to stabilize. I certainly did not think it would take 8 years to get this far.
The past few years have been quite a roller coaster ride of emotions and up and down on carbimazole and levothyroxine. There is one thing that still irks me and it's when the Doctor asks me if I'm feeling normal today. I'd like to know what normal is, having not felt normal for the last 8 years.
I only have a check once a year now, but every time I go for a blood test I get nervous. It hasn't been the most positive of experiences, but there is light at the end of the tunnel.
It all started in October 2013, when I noticed a significant change in my entire body. Getting home from work, from the moment I would sit or lay down, I knew I wasn't doing anything else for the rest of the day. I had absolutely no energy to do anything. I started to worry about my girlfriend breaking up with me because I no longer could go walking/running after work like we used to. I would fall asleep while driving to work and on my way home from work - the scariest feeling I've experienced.
One day a co-worker and I were having a conversation and I literally fell asleep while focusing on him as he was telling me a story.
Hypothyroidism is very stressful! Months went by until I finally gave in and got checked out at the doctor. Every day people would ask me if I was high, of course not! I DO NOT SMOKE!
My eyes were almost completely shut and I could not do anything about it. My face, hands, feet, legs etc were completely swollen. After taking my picture for my passport I got a letter in the mail that I had to retake it because they could not see my eyes.
During Thanksgiving I felt so out of place, I knew I didn't look like I usually did and the last thing I wanted was my family to worry about my health. The next morning after looking at pictures me and some cousins took I finally gave in. I knew it was time to figure out what was going on with me.
It wasn't until early February of 2014 when I decided to go and get some blood taken to see what was going on. Once the results came in I was told that my thyroid was non-existent. The doctor told me it was so bad, it was completely gone. My weight had skyrocketed to 314 lbs, the heaviest I had ever been. I usually stayed around 270lbs. Doctor prescribed me with 100 mcg of levothyroxine and asked me to go back in 8 weeks for a check up. After taking the tablets for about 2 and a half months I noticed my face was no longer swollen, I could actually pop my knuckles because my hands were no longer full of fluid and my weight had dropped 20 lbs.
I can't say I feel 100% better because I don't, but I feel so much better now that I am on a prescription. I am currently on 150 mcg and I have another check up again soon. I really hope I can stay on the dose I am currently taking. The main con about this medicine is the increased appetite. It makes you feel hungry all the time and I need to control this because I really want my weight to drop.
If you are experiencing some of these symptoms, please go and get them checked out. It's scary. I am not the type of person to go to the doctor unless I really need to, and this made me go to the doctor.
I was diagnosed with hypothyroidism (or underactive thyroid) on 1 February 2014, although I had been borderline underactive for years and constantly going for blood tests. In the few months leading up to the diagnosis, I was actually hoping to be diagnosed because I was fed up with the symptoms getting worse. I was exhausted and tired all the time, even if I slept really well the night before. I had a constant really low mood, feeling cold and I was gaining weight, despite eating a lot less. I had many more of the symptoms too and it was becoming too much for me, being in my first year of university where I have struggled with homesickness and not fitting in.
In some ways the diagnosis came as a relief because at last I was going to be treated and that gave me a little bit of hope.
The doctor prescribed me a low dose of levothyroxine to take once a day until June. They also advised that I speak to the people in the Wellbeing Centre at university which I did and I found it very helpful because they advised me to talk to my tutors, who also supported me, predominantly by ensuring that none of my lectures were too early in the morning when I felt worse.
In the first three weeks it didn't seem like the tablets were working, in fact I felt like I was feeling worse than before. I went back to the doctors who said that they hadn't given me a drug to take, but that essentially I was taking the thyroid hormone in tablet form. Then they explained that they do take a while to kick in. After taking levothyroxine for about six weeks I was starting to feel the difference.
Unfortunately now I don't feel that levothyroxine is working for me because the symptoms of the hypothyroidism are getting a lot worse again which I believe is because I'm not on a strong enough dose.
The most annoying thing about having hypothyroidism is definitely having to have a lot of blood tests which I know isn't the worst that can happen but it gets very dull, plus I have very useless veins so it usually takes them numerous attempts to take the blood. When I got my diagnosis I was shocked at how many people, especially younger people, did not know about the condition. I had to explain it all to a few people which has in a way inspired me to write about my experiences with hypothyroidism to help raise awareness of the condition. The only reason I knew about underactive thyroid is because we have a family history of it.
I found it hard to accept that it was highly likely that I was going to have to take levothyroxine every day for the rest of my life from now on, it was a scary thought for me, I don't know why it was scary? I guess I was scared of what might happen if I ever forgot to take a dose one day. I often feel like I'm very alone with this condition despite knowing that it affects lots and lots of people. I do have times where I feel like no one understands that I have days where I feel tired and emotional and at the moment these days are going to be a lot more frequent than in a year's time. A more personal difficult thing for me to accept by being diagnosed with hypothyroidism is that I'm not going to be able to give blood until my levels have stabilised, one of the things that I've always wanted to do, my goal was before the age of 20 to give blood regularly.
To end this on a more positive note I know that there is light at the end of the tunnel but it will take a while to get through that tunnel, and it's important to keep focused on that light.
I was diagnosed with an over-active thyroid at the age of 7, I am 17 now and I have suffered with this condition for the past 10 years of my life. in someways it has been quite lonely, as no-one knows much about the thyroid, which is why I was so happy to see this page!
Thyroid issues in children are obviously very rare, which is why it had never been picked up before. As a child I had ADHD and was under a specialist for this but my nan noticed that my eyes always bulged and I had a large goitre. She immediately pointed this out to my mum who then spoke to my ADHD doctor. Because of my age, my doctor said that she bets her years wages, I will have the blood test and it will come back negative because it's just so rare in children. I had the blood test and to her surprise it came back positive.
As a child, I didn't really understand what this meant, no one had ever spoke to me about thyroid issues before, I didn't even know what a thyroid was so it didn't really affect me that much. The only thing that did bother me was the blood tests every 3-6 months and the constant changes in my dosages for my medication. I was told to go on carbimazole but my dose age changed numerous times.
I hated having to take tablets, that was the worst thing about having the thyroid issue. I tried so many different ways of taking my tablets, but being a kid it was the one thing I didn't look forward to. I just wanted to be a kid that didn't have to worry about taking tablets or having blood tests, or missing out on lessons at school.
As I got older I just used to forget to take the tablets, and a couple of years ago I stopped taking them for about 6 months, this did me no favours as I was having heart palpitations. One day the paramedics were called to school, I went to the nurse and had a pulse of over 160! so of course I went back on the tablets.
In February this year I had the radio iodine treatment, I can see the different already, my neck looks so slim and I'm starting to see definition in the shape of my neck. it's made me feel so much better as I now don't have much discomfort when wearing shirts with top buttons, as previously they used to be really tight on my neck where it bulged out so much! I find out in June how successful the treatment actually was and if I need further treatment!
But believe me, it all gets so much better, although you may not feel particularly great about it now, you'll be find in the end!
Looking back at my journey the past four years, it has been my own will power that has got things where they are now.I went to my doctor of three years with lots of different symptoms like migraine, weight gain from 10st to 12.7st in 2 years, tiredness, depression, earache, short temper, panic attacks, over a period of 2 years with just a half hearted prescription and no real attempt to listen to the symptoms I was getting.
Only when I went into my appointment fed up with all the heath issues I seemed to be having written on a piece of paper in a shopping list form did he finally say 'Oh I think we need to get your blood tested'. Wow !!
He asked me what he should be looking for in my family history. I said cancer, diabetes, arthritis. That's all I knew of in my head at that time.
When I went back he said 'no cancer, no diabetes, no arthritis, but who has thyroid problems in your family?'
I remembered my niece saying that her mum (my sister) had been on tablets for Thyroid problems, We are not in contact. She is 2 years older than me and was diagnosed in her mid 30s. I was diagnosed at 39 having struggled with symptoms for two years.
He said that he would put me on 25mcg of Levothyroxine, that went on for a month, then 50mcg until we got to 100mcg that I am on now. My doctor never really explained to me what I had or the symptoms that he had ignored for the last 2 year, he just said that the tablets would help me.
I have had to look online to see what it is that I have and how to cope with it. I have had no support form my doctor and the language barrier is a problem for me to understand what he is on about. I suffered problems at work because I didn't know why I was irritable and tired. I would come out with statements that weren't me at all. I would cry at home just washing the dishes and wouldn't know why. I had panic attacks that frightened me at night.
The end result is that I don't crave sugar anymore although I haven't lost any weight my stomach is flatter and my boobs have gone down a bra size. I still have my off days and I am very sensitive to upset. Although I do still suffer terrible migraines and earache sometimes for three days at a time which affects going to work as it's a noisy environment.
I promote chat amongst friends so that they are aware of the symptoms and what to look out for. My journey hasn't been easy and if I had contact with my sister who had thyroid problems before me, she could have planted the seed earlier for me to put two and two together earlier.
Best of luck to all the people who have this health problem and may you have a smoother journey back to your old self............
Hi, I can't believe I found this website a year after having thyroid surgery - I actually cried when I read it. I know it would have helped me so much when I was diagnosed with Graves' Disease. I have felt so alone with this condition that many seem not to know about and how different the care in different NHS Trusts have been.
I was diagnosed in 2009 with Graves' disease 2 weeks before I found out I was expecting my little girl. I had been admitted to hospital with a racing and irregular hear rate - my resting heart rate was 195 bpm. I thought I was having a heart attack. I remember thinking I have no idea what this condition is and how key the thyroid is to your body functioning properly.
I endured months of stress of doctors changing doses and drugs. One doctor prescribed a drug that my endocrine doctor had said I couldn't have when I was pregnant because it was easier to administer - he didn't know about endocrine conditions and said that I should stop being so difficult. Luckily I found the inner strength to create merry hell that day so they called a specialist doctor that specialised in maternal endocrine conditions (Chelsea and Westminster Hospital) who was amazing and just gave me the time to talk through options and the risks to the baby.
By the end of my pregnancy when little Sophia was born, someone had helped stabilise the Graves' disease - she was born healthy, happy and with no thyroid issues of her own.
I felt pretty good for the first 4-5 months after having her but then the Graves' really became problematic again. I was having panic attacks, resting heart rate even when asleep of 125bpm and generally feeling awful. It was a hard decision but it was recommended that I had the radioactive iodine. The actual process other than being separated from my family was not as bad as I had imagined and I looked forward to getting back to myself as I had begun to forget who that was.
A couple of months after the treatment I felt worse than I ever had - even with Graves' at it height - panicked, heart racing, shaking, sweating and feeling like I wasn't part of my life anymore - just like I was watching from the sidelines.
I didn't enjoy anything, I had no energy, I couldn't laugh at anything - Only Fools and Horses is something that gets me every time and it was like watching a political broadcast - I had no interest and felt like I was going mad. My doctor was unsupportive at first and basically said buck up.
One night I had run a bath and sat on the edge and I just didn't have the energy to take my clothes off to get in and was considering just getting in the bath with my clothes on - I decided I had to do something. I honestly feel without my husband and parents I wouldn't have coped as they really pushed the doctor to see me again and run tests. The upshot was that radioactive iodine hadn't worked.
I was totally crushed and went into a deep depression, withdrew totally and at times wished I would just not wake up. I just couldn't face anything. It took about 12 weeks from that point to have my thyroid out.
It is the best thing I ever did! Within 3 days the fog began to lift, my children made me laugh and I felt like I was coming back. Six weeks after the operation my husband and I went out for dinner for the first time in about 18 months and during dinner I was explaining how I wanted to set up a business and was talking about branding etc. He said he wasn't keen on the shade of red I had picked. I got really stroppy and said a few choice words!
I looked up from my food and he was sitting with tears streaming down his face and I thought crikey what did I just say... 'I said what on earth is the matter?' and he said 'You're back!'
He said for the last couple of years I had no fight anymore and this small act of basically stroppiness to him meant everything. Believe me the stroppiness charm is wearing off now but it really brought home to me what a strain on the family this all was.
I am not 100% yet, my levothyroxine dose needs a bit of tweaking but with regular checks it is manageable. Now I listen to my body and the signs and I will take action.
I wish I had read these amazing stories as I think it would have helped me not feel so alone - I can't believe no health professional ever recommended it to me or gave me a leaflet.
I would love to be part of this organisation and raise awareness as if I can help one person not feel as I did this may all have been meant for something.
Thank you for listening.
After four years of having a post natal hyperthyroid/ Graves' disease with a multi modular goitre I decided to have a total thyroidectomy as having a 4 year old child and radioactive iodine treatment was not an option as I couldn't bear to be away from my little girl.
I wanted to give a positive side to the story as prior to my operation I only ever read horror stories of weight gain and depression. Symptoms prior to my operation included: irritability, irrational, palpitations, anxiety, paranoia, thoughts racing, always busy, unable to concentrate, couldn't sleep, hand tremors, constant diarrhoea, weight loss then weight gain, hungry all the time, couldn't sleep then couldn't get up once asleep, basically wired for sound 24 hrs a day.
I was scared about the operation for many reasons: that I might die in the operation and I have a child was the biggest one, how big the scar would be, losing my voice, would my fiancé still fancy me with a scar, would it work, will I get depressed being high for so long then being low, will I get fat, so many things really.
The operation went really well, I had low calcium afterwards but this was OK within 24hrs. It wasn't very painful. The drain came out well and the scar was extremely neat, lower down than I thought which pleased me and I can now see it will fade pretty quickly. Some days it is redder than others some days it is white. I was back to work as a paramedic within 4 weeks, this probably would have been earlier but I have to lift a lot of heavy people and equipment. My friends joke saying my scar is my chocolate after eight slot!!
Now most significant is how I felt after and how I feel now. Amazing is the word. As soon as I came round it was like a wave of calm had washed over me! Seriously miraculous. All my symptoms have gone and I now feel my old self again I can actually feel which is the most unusual thing before I felt numb and just manic no time to stop and feel happy or sad or excited. I joined a slimming club straight away and lost 16lbs in 3 and a half months steadily. So lost the weight I gained on my pre thyroidectomy medication. It was nice not to feel starving all the time too. Overall I'm happier, my family are happier and I just wish I hadn't dragged my feet having it done. As for the scar it's part of my story/ journey in life. My daughter asks to see my scar every day and tells me mummy it's going or mummy it's getting shorter! I hope this helps amongst all the scare stories, I wish I'd read my story before I had it done.
'I don't want to get up. I went to bed early the previous night and slept for 10 or more hours but I'm still very tired. Why am I cold, fat and make everyone's life a misery with my mood swings with can turn at the blink of an eye? Why is my hair so limp, thin and straggly, why is my skin dry and patchy, why do my legs feel heavy? Why are my periods so heavy, painful and last for nearly 2 weeks? Why do I feel like I have permanent PMT?
'It's the middle of July, the sun is out but I'm so cold and drained. Over the last few years I don't seem to be able to hold a conversation with anyone for longer than a few minutes, I flame up when I do, which is irritating and embarrassing. I get out of bed, pull on my cosy dressing gown and head downstairs to light the fire and put the heating on. I get the children ready for school, give them breakfast snapping at them as we go, rushing them along. I put on my coat, I still can't get warm. After seeing the children to school I head for work. Can't anyone do anything right, why are customers so difficult again today. I find myself getting worked up over the silliest thing, I burst into tears then snap at people. Why are they looking at me & whispering to each other? I'm home from work, I light the fire, put the heating on and curl up on the sofa with a duvet over me. In the distance I hear the doorbell, I get up to answer it, it's my neighbour and she has my children with her. I fell asleep and forgot to fetch my children from school. I struggle through the next few hours, cook the dinner, wash up then put the girls to bed. I head for the bedroom about 9 o'clock, crawl under the cold covers and drift to sleep.
'It's now August, I need to see the doctor I can't carry on like this any longer. The GP at the surgery is very understanding, listens and books me in for a blood test the next morning. I receive a phone call about a week after the test, the nurse wants to see me that morning and said I would be there for a half hour appointment and would I like my husband to come with me. He wasn't pleased having to take time off work. When we arrived, Jean the nurse, sat me down and asked if I knew about a condition called under-active thyroid? She did give the Latin medical name but I rarely use it. She explained the condition, the symptoms I was experiencing, why I was feeling the way I was and that I'd need medication every day. Over the next few months I had several blood tests to make sure I was on the correct dose and with a few therapy sessions helped me cope with my emotions.
'That was 20 years ago. It took several months to feel like a person again instead of the cold witch from hell. Having a caring GP and nurse who understood, took time to talk, answered my questions and had the patience to help me through my nightmare. I can never thank them enough. Although I have regular checks each year, the last 2 years it has become unstable and the thyroxine dose has been adjusted. If I'm running OK my thyroid is OK, if I'm feeling a little low for longer than a couple of weeks then I know it's time to see the doctor.'
How did I feel? Dry itchy shins, tiredness, waves of PMT, waves of depression, ovary pain mid cycle. A routine optician check up showed high intraoccular pressure so referral to glaucoma clinic. I am high risk for glaucoma as my pressures remain high, so I'm under regular review at hospital although I haven't yet been diagnosed.
Hair turning to straw and breaking easily. I felt my hair was growing very slowly, but with hindsight it was probably breaking off.
Becoming tearful, easily overcome with emotion. Leg muscles hurting when I climbed the steps at the train station. Waking in the night with cramp in my legs.
When I looked in the mirror I felt I was ageing fast and had sad expression. Agoraphobia at the weekends. Checking lights were off. Checking doors were locked. Thought I must be developing OCD
The point at which I became concerned about myself was when...
I would burst in to tears at the drop of a hat
I found conversation very tough, I could not think or process information or speak quickly enough to chat away with a friend. I could not handle spontaneous events well.
Within 20-30 mins of eating or drinking I would get a mouthful of it undigested returning up to my mouth spontaneously.
I was referred by my GP for counselling due to my tearfulness. The receptionist for the counselling service triaged me on the phone and advised I ask doctor to run blood tests first. I asked GP and the blood results showed my TSH was over 100. I started levothyroxine. At first the medicine made me feel breathless and my heart fluttered. I felt tense and twitchy for weeks. In time it settled. As weeks passed I unexpectedly felt I was coming out of a thick fog, which was at first unnerving. As I slowly got better I realised how much I had been struggling with pretty much everything, my thinking had been hazy and muddled. Simple tasks had been overwhelming at times, but I had not realised it was me.
The levothyroxine resulted in my hair falling out a lot. I still have plenty of hair, but it is much much thinner and the new hair is not so dry. My GP said the medicine has no side effects, so it was a sad time as masses of my hair sat inexplicably in the plughole! It is a year since I started levothyroxine almost. My TSH recently went up a bit so my dose has been increased slightly, but overall I am very much improved.
I feel sad when I think how hard the last few years were. It is an invisible medical problem so nobody is very interested, so generally you do not receive support from anyone. Inside you just gradually emerge from the wishy washy world you had been scrapping by in unwittingly. I am not 100 percent tip top. I had not realised how far I had floated away. Now I have jumped off the hypothyroid lilo and am very slowly paddling ashore.
Last week I realised I had not had any eaten food come back up to my mouth for months. I found an article online that said hpothyroidism slows down the lower oesphageal sphincter processes, so now that mystery is solved.
I wish anyone who feels out of kilter would be offered thyroid function test straight away. The longer you have it undiagnosed, the longer your list of symptoms becomes.
I was 25 at the time the search for the cause of my irregular heartbeat started. My heart was not racing, but beating three normal beats and then a too long a pause and then a very strong beat. Sometimes I felt this during the days, but mostly occurred in the evening. I couldn't sleep because of this. Often I sat up with pillows all around me trying to fall asleep as sitting felt better. As my father has had problems I was also quite worried which probably made it all worse.
The doctors checked the pulse with 24h ECG, checked blood pressure, did ultrasounds, blood tests - everything looked good. Of course on these evenings my heart behaved... But the irregular heartbeat still kept me awake. New tests were made, also these were all good. I started to feel like a hypochondriac doubting the signals my own body was sending out. My boyfriend could also clearly feel the irregularities which gave some comfort.
After going back for tests for over five years, nothing had been achieved. "Luckily" I moved to Germany. After restarting all the tests it only took three years before I was finally diagnosed with Hashimoto's!! It was such a relief! I was not a hypochondriac!!
Apart from the irregular heartbeat I had pretty much no other persistent symptoms. I had some shorter periods where my concentration was bad, some days where I was completely apathetic, but generally I am a person with loads of energy (too much to some). Even my doctor in Germany was surprised that I had Hashimoto's and not an overactive thyroid.
I have been treated for two years now but getting the balance right wasn't isn't easy. I was checked once a month and it took about 13 months for it to stabilise. However, at the moment my TSH-levels are too high and, in the meantime, I have moved to China, so new lab but very efficient testing. Let's see how it continues.
At least I know now that I have a healthy heart! But unfortunately, because of the antibodies, I am no longer allowed to donate blood.
Good luck with your thyroid and do take your body's signals seriously!!
Overactive thyroid and surgery
I was diagnosed with a thyroid disorder six years ago. I was mega-stressed at the time because my mother-in-law was dying of terminal cancer, which rips any family apart, but by February 2007 I was shaking inwardly and out, sweating, anxious, and continually tired, and had lost three stone in two months.
One day I was trying to get coffee granules into a cup and was shaking so much that I decided to call my GP. He took some blood tests and called me a week later to explain that my thyroxine level was nearly off the scale at 60. He explained I had Graves' disease (over-active thyroid). I was referred to an endocrinologist. I had atrial fibrillation and was given beta blockers, then had ultrasound scan, radioactive iodine uptake scan with gamma camera, and fine needle aspiration.
I was put on carbimazole and I had monthly blood tests to check my white cell count, but eleven months later I still had many of the same symptoms and was recommended to have the thyroid removed.
Surgery followed. I was told about the risks of bleeding, vocal cord damage, and infection but I don't remember being told about the risk of removing or damaging my parathyroids. It just said 'ca risk' on my consent form...
I first realised there was something wrong the morning after the operation. I had tingling, tetany, frozen vision that went to black and white, and I felt like a machine that was grinding slower and slower and was going to stop, I couldn't lift my head to drink or move my tongue and had to use little sponges on sticks to wet my lips.
I found out after I was discharged with medication and got home that I now had hypocalcaemia (low blood calcium). Later I learned that I had hypoparathyroidism: my parathyroids - the four little glands behind the thyroid that control calcium levels - had been removed or damaged.
I was unwell for a long time after surgery and my endocrinologist gave me T3 as well as T4 to see if that would help, but this had little or no effect and was stopped. My hypothyroidism is now managed well on levothyroxine.
My parathyroids didn't recover after surgery and I now have 'brittle' hypoparathyroidism which means I have unexplained dips and highs of calcium levels. I take alfacalcidol and copious amounts of calcium daily and my eyes are dry and I use gel tears every day. I fluctuate between high and low calcium levels and once I had a spell of my kidneys not working properly when my calcium levels were too high. I can now recognise the signs of low calcium. I keep logs of all my blood test results and keep a diary of symptoms when I feel ill for a period of time and see an endocrinologist every three to four months. I am very lucky and have a good GP and endocrinologist who look after me.
My experience has been life-changing. I went into hospital with one endocrine condition and came out with another. I wear a special medical talisman around my neck at all times in case I ever have an accident so people know I might not survive without my medication and supplements.
It hasn't been an easy journey, but I have never once felt sorry for myself. My life has changed immeasurably since I was first diagnosed, but I've managed to carry on working and still enjoy life.
I have found the support of the BTF and HPTH UK invaluable both pre- and post-op. So I now volunteer for both organisations.
There were no support groups in my area so I started a local support group for thyroid and parathyroid disorders which has been meeting regularly for four years.
I work closely with the Endocrinology Department at the King's Mill Hospital, Nottingham which supports us by organising and promoting thyroid/parathyroid awareness evenings once a year at two different sites. Around 550 people have already attended!
Last year the hospital invited the group to participate in internet training for the expert patient session about finding reliable and safe information on the internet.
I also run a telephone helpline for the BTF and Hypoparathyroidism (HPTH) UK. I have had telephone helpline training kindly provided by the British Society for Endocrinology and HPTH UK.
I raise funds for both the BTF and HPTH UK and regularly hold raffles and tombolas. I've also organised a hoe down and a summer fayre with the help of my lovely work colleagues at Sure Start.
But my most special fundraising effort has been my little book Hisham's Envelope which I wrote for children who may have a medical condition and may need blood tests and visits to the doctor or to hospital clinics. I dedicated the book to my endocrinologist who was my saving grace after surgery and at the endocrine clinics, all the proceeds from my little book and fundraising efforts are split 50-50 between the BTF and HPTH UK.
We need better awareness of thyroid and parathyroid conditions both in the general public and within the medical establishment so I recommend people to ask for a referral to see a specialist and get support from someone have to spell the end at all.
For anyone facing surgery I am always honest and point out that my experiences are personal to me, to choose a surgeon wisely and choose one who is experienced in doing thyroid surgery. It is all about giving people reliable safe information for them to make their own decision.
I was 23 when I was diagnosed hypothyroid. I fell pregnant and gave birth to my son at the age of 20, but experienced severe problems in my relationship and it broke down, acrimoniously. I was working part-time, back living with my Mum and Dad and trying to raise my son at a time when all of my friends were out partying and enjoying life.
For 3 years I constantly felt tired and depressed, with little or no energy to do much more than work, come home, put my son to bed and sleep. I kept telling the doctor that I wasn't right but there was nothing obviously wrong with me. I hadn't put any weight on as I had no appetite at all and my job was quite physically demanding (which I struggled with). She kept diagnosing stress-related illness. Then, one day while I was on holiday with my parents and my lad, I blacked out for no reason. When I told my doctor she said I'd had a panic attack. This happened a couple of times and then my neck swelled one morning. The doctor sent me for some tests and I was diagnosed hypothyroid.
My specialist got my dose right after about 6 months and I began to feel 'normal' again. That was 20 years ago. Now I live a full life – I do a lot of exercise; cycling, climbing and yoga, to name a few. I have bad days, particularly suffer from PMT (as I am pre-menopause) but I've learned to work through it. My weight is slight as I am careful what I eat and I don't drink a lot (or smoke). Most people I tell that I am hypothyroid don't believe me as I don't display any symptoms that normal people associate with underactive thyroid problems.
I thought this might make other people who are struggling with hypothyroidism have hope that it can be better, with a little belief in yourself. It's not all bad. I don't have a support network near me, but I don't really need it. But for those who do, please seek help. I thought I was going mad until I was diagnosed and then I did lots of research about hypothyroidism to reassure myself. I'm still learning.
I found this page when I was looking up information about my daughter's condition and would just like to share with you how she's coming along with this condition.
My daughter was only six weeks old when I found out she had a thyroid condition. I had never heard of this condition before - and when reading up on it found out that only one in 4,500 babies/children get it. She has an underactive thyroid and is on 75mcg and has to have her bloods taken every couple of months.
Now age three she has come a long way and is really bright and fast at everything she does. Even though she has this condition it hasn't stopped her doing things. I couldn't be prouder!
I have Grave's Disease associated with my overactive thyroid. I became hyperthyrotoxic in 2008 at the age of 37 after a highly stressful and emotional time. My mum had an overactive thyroid and so I think that the hereditary link together with my personal circumstances, mine kicked off too. I started on Carbimazole but then was changed over to Propylthiouracil as I was trying to conceive. I did sadly have a miscarriage but I then went on to have a perfectly healthy baby girl six months ago. I was worried about my fertility given my age and thyroid problems but thankfully all has been okay. My hyperthyroidism has been in remission for nine months (I think my pregnancy hormones redressed the balance) but a recent blood test upon my awareness that something was wrong has confirmed my Grave's has returned unfortunately. Oh well..back on the meds..nevermind it could be worse!
I have hypothyroidism. I was diagnosed when I was 19 years old and am now 28. I am experiencing depression at the moment due to my weight gain, and my weight gain is due to lack of energy. I live in an area where there are no support groups for thyroid patients. I have recently changed doctors and hopefully this will do the trick!
Reading the stories on the BTF website has given me great hope!!
Kate has just been diagnosed with hypothyroidism and one evening she decided to put pen to paper and write a poem about her experiences and feelings.
I know I shouldn?t moan or really
whinge at all
My life is not that bad, not compared
to some people
You see I feel tired, sleepy all the
time, and days roll into one
I?m constantly in a daze, no emotion
and no fun
It?s not supposed to be like this, I want
to be alive and energetic
I?m a 32-year-old, feeling 82, how
When I arrive home from work I eat
dinner, watch TV, and wrap up with a
blanket on the couch
I?m quite content with a simple life but
fed up with being irritable and a
To be free from pain in my neck,
shoulders, right knee and left foot
would be great
Just to have a body in a slightly better
I really don?t want to go on but have
now found out the reason
I have been diagnosed with an under-
active thyroid condition, called
I?ve started my medication,
levothyroxine, and already feel slightly
Hopefully this will be the start
to feeling better, for me, for Kate
In 2000 I started having some strange symptoms of illness like swollen lymph glands, losing weight, high energy spurts followed by times of really low energy and then panic attacks. I had two panic attacks at work and finally made an appointment to see my doctor. My doctor decided to do a full workup of blood tests, and I said, 'oh, by the way, my mum has always complained about her thyroid.' The doctor agreed to test that also.
Long story short, it turned out to be Hashimoto’s thyrotoxicosis with multinodular goitre. Treatment was a total thyroidectomy and levothyroxine for life. This really did not alarm me; I was just happy that I had something that could be treated.
It was quite the ordeal fine-tuning the levothyroxine to find the right dosage for me after the surgery. One size does not fit all in the case of levothyroxine! And during the ordeal I did gain more weight than I could imagine, slept more than I ever imagined, and lost my zeal for living to the limit. But after seeing my GP and fine-tuning my dosage, I changed my eating habits and what I ate, continued my exercise regimen and lost almost all of the weight, regained most of my energy and began to live again.
When all of this was happening to me, I had no idea that BTF existed. Since I started volunteering at BTF in 2010, I have learned what happened to my thyroid, why it happened, and what started my thyroid disease. I now know how to listen to my body and work through the low energy days as well as the high energy days.
Thyroid disease has not stopped me from doing anything and getting what I want out of life.
My story is detailed in my book Thyroid Cancer for Beginners. It describes the four year journey I underwent from 2004 - 2008 from being first diagnosed with papillary thyroid cancer, the operations and the damage to my voice afterwards, and the love and support I had from my family until eventually I achieved remission in December 2008. There is a happy ending!
When I was in my mid-forties I noticed I was feeling tired, and my hair and skin were dry, I had poor memory and concentration and my muscles were stiff and ached. And like many women of that age I blamed the menopause. I worked in our family business and found that my energy levels were sinking at a dramatic rate. What had been a mere breeze became an impossible task.
I went to see my GP – several times! I told him how tired I was and that I simply did not want to go out in the evening. He asked me if I was alright once I was out and seemed surprised when I said no, I only wanted to go home!
So I had a blood test – which showed that I was hypothyroid – and I was given 50mcg of levothyroxine daily. I felt relieved that there was an actual diagnosis and it had not all been in my imagination.
But I was feeling more and more ill, the stiffness in my muscles was dreadfully painful and I began to suffer from depression. There was a reluctant slight increase of the levothyroxine dosage but still I was ill, and I sank into a deeper depression. By then I had done some reading on the subject and attended a couple of BTF meetings, and I was convinced that I simply needed my hypothyroidism treating properly.
As a result of a BTF meeting I went to see my GP and insisted on a referral to a consultant endocrinologist who I knew by then to be sympathetic to thyroid patients.
The first visits to the endocrinologist resulted in the raising of the levothyroxine dosage and I began to feel a bit better, although far from well. However my blood tests showed that although the level of free T4 had increased, the free T3 remained consistently low, and so liothyronine was added.
For me adding liothyronine was magic! Although as it started to work for me the pain in my muscles increased (as I had been warned that it might) it eventually eased, the depression lifted, and the ‘brain fog’ reduced. My skin and hair improved and while I have never got over the tiredness it was not as debilitating and I felt less drained, so I coped more easily.
Despite the improvements I never quite regained my old self. Sometimes there is forgetfulness, the fogged brain and difficulties with concentration, and I have never quite got over the tiredness. I mentally split the day into three sections, morning, afternoon and evening. I can usually do two of the three but all three is a step too far!
So, with planning, I cope very well. But to be honest, if it wasn’t for the tablets, I don’t think I would have been here to write this!
Severe hyperthyroidism thyrotoxicosis and Graves' disease
I was diagnosed at a young age of 15, still in school. I was extremely sporty and suddenly became so unfit, after numerous visits to the doctors I was diagnosed with severe hyperthyroidism thyrotoxicosis and Graves' disease. At the beginning of my diagnosis I was managing but a few weeks later I became so unwell in a short space of time that. I was signed off school for one year and was bed rest with hospital visits daily.
The condition affected every part of my body especially my heart. I had an average heart rate of 140bpm and was on all sorts of medication including beta-blockers 3 times a day. My condition was so severe no one knew how to treat it, it was ‘trial and error’. I had several ‘thyroid storms’ where my body just collapsed. These can be fatal and for me they nearly were.
I was treated with Carbimazole for months and then had radio iodine treatment to try kill my thyroid. The main problem for me was my heart. I couldn't believe in such a short space of time how unwell I became. I went from playing sports everyday to find it a struggle to walk up one set of stairs. However, it is now four years later and I am much healthier and recovering from the disease.
I want people out there to know that this disease can affect young people just as bad, although it isn't as common, it is still there. I'm much happier and healthier in myself and want people to know that it may take time but you will get there. There will be days when it is more of a struggle but just be patient with your body and don't push it. I have overcome this horrible illness and there is treatment out there.