We are collecting case studies from people who have become well through taking thyroid medication, and from people who are still suffering symptoms of thyroid disease despite taking thyroid medication.
If you would like us to use your story as a case study, you can submit it to us online here
After months of weight loss, heat sensitivity, palpitations, anxiety and a general change to my whole demeanor I was diagnosed with Graves Disease in January 2012.
I was referred to an endocrinologist as an emergency, put on Carbimazole and beta-blockers and told that I also have thyroid eye disease and a soft goiter.
The doses of medication have since been managed remotely as I have had 4 appointments cancelled by the hospital. I am due back there in July, my first visit since January; this has caused me massive anxiety and would have been worse if not for a caring GP practice.
I am told I am in early days and have a long haul ahead of me. I am struggling on a daily basis. It is now nearly a year since I have felt well or anywhere near myself.
I am waiting to see what happens next. I have regular blood tests at my GP surgery, the results of which are relayed to the consultant who then makes a decision about my dosage and relays this back to my GP who in turn sends me a text message. It may sound efficient but actually it stinks and my condition has often changed in the lapses between this information sharing.
My life has changed beyond recognition and so have I - both in appearance and personality.
I work in the local Community Mental Health Service and nowadays my patients are often in a better mental state than I am. The service is undergoing cuts and I could well be out of a job in a few months anyway. Much depends on my ability to show the service as value for money when on most days it’s all I can do to get out of bed and function at a minimal level.
I don’t know where this will take me and there are days when I am so low I am not sure if I even want to be here. My family is puzzled, my husband is suffering, my job is suffering and so am I.
I hope to be able to bring something positive to this once I am further down the line. I am told that one day I will feel well again but at present that doesn’t seem likely and I have very little faith in the doctors.
Fingers crossed that one day I will wake up from a healthy sleep where my eyes don’t feel like they are rolling in sand and my body doesn’t feel like I've been hit by a truck and I will know the worst is over - sorry to be so negative guys.
7 June 2012
I was first diagnosed with hyperthyroidism/Graves and after a battle I became balanced.
In 2009, I was taken off the medication to see if I would become hyperthyroid and require radioactive iodine. Within six weeks I became hypo, which I believe is unusual. This was discovered after my voice disappeared and I was diagnosed with a benign heart murmur . I visited two consultants and voice therapist for this episode. I was then put on 75mcg of thyroxine per day.
At the beginning of January 2012, I realised that my symptoms were again becoming similar to hyperthyroid, with loss of weight (8kg) and hair, heart palpitations and an elevated heart beat.
In February/early March, I went to the GP who supposedly tested my thyroid and it appeared all normal.
In March, my symptoms had worsened to the point of exhaustion with severe muscle and bone pains, shakes, muscle weakness and spasms but alas the thyroid was ok. I was sent home from work as was unable to walk or stand.
I was sent to a rheumatologist to see if there were other reasons, as I have had ME/CFS. She took one look at me and said it was my metabolic system. Within a week I saw an endocrinologist and had blood tests.
The following week my results showed my T4 levels at the highest you could get. I was placed on beta blockers to reduce the heart rate.
This could have been resolved sooner had the NHS standardised the testing for thyroid conditions by checking both a patients TSH and T4 levels. I was informed by the doctor that the laboratory will only test T4 if the TSH levels are showing that the levels are either elevated or low.
However, this method does not work if the problem is caused by the patient taking too much levothyroxine and I believe I will not be the only patient that has suffered due to this. My GP has been supportive and has confirmed she will now test patients’ T4 levels, even though this is not standard practice.
I am currently not sure how long it will take for recovery, as initially I came off the thyroxine fully for 3 weeks, although the consultant wanted me to continue on 25mcg per day immediately. I was not able to do this due to the symptoms as they were severe, but have started to take 25mcg of levothyroxine after the break of 3 weeks as at this point my T4 levels were in normal range. Naturally, there is still a risk that I will go into hypothyroid state, so this will need to be monitored regularly.
I have now been off work for a significant period of time, and my 21 month old son has been managed successfully throughout all this by Daddy.
I was 30 when I was diagnosed with Graves’ disease and was unwell. I had massive weight loss and palpitations, which meant I had to visit my GP for help and was later diagnosed with hyperthyroidism.
I was diagnosed in February 1999, then I was stabilized on carbimazole and then thyroxine doses, which were either too low or too high.
I had a total thyroidectomy in September 1999. This resulted in damage to my parathyroid glands, for which I took calcium tablets for a short time. As a result of my operation, I developed hyperhidrosis, which is sweating of my hands, feet and armpits and I currently receive botox injections for this.
I am now 42 and wonder what life would be like without feeling tired, not always, but some of the time. I have two children. It's hereditary and my mother has had thyroid cancer and is now well. Early diagnosis is crucial to getting this under control.
In 2002, my weight, having risen to 12st 12lb, height 5'4" tall, I joined Slimming World. By August I had reached 10st 3lb. I maintained my weight at this level for two and a half years, attending for weekly weigh-ins.
Then, without any deviation from my maintenance schedule, I began to gain weight, 5lb on, 2lb off, 7lb on, 1lb on, 3lb off etc. It was as erratic as that. I kept diaries of my food intake for eight weeks, which the club leader submitted to their Consultant Dietician. I was advised to seek medical help.
I had blood tests for thyroid and diabetes, the results of which were "inconclusive" and I had to push for a referral. A local endocrinologist carried out a couple more blood tests and diagnosed ME with fibromyalgia. He recommended counselling to help me come to terms with the psychological effects of the menopause.
14 months later and one and a half stone heavier, I decided to return to the GP. I had itchy ears and queried an ear infection. My legs were swollen, particularly at the end of the day. I was told it was age related, sluggish circulation, to drink more water, join a gym and that I had eczema in my ears.
I requested a referral but this time privately. £6,500 later, I had been investigated for haemachromotosis, non-alcoholic stenohepatitis and discovered I had had glandular fever at some point. There was a thyroid problem but it was uncertain which way it was to go. Wonderful! So it wasn't "neurotic menopausal woman syndrome" after all!
Four months later, I returned to the female GP in our practice with the same issues but having lost 1st 7lb in a month. I was delighted with my weight loss but unsure how I'd done it. She asked if I would mind her doing a blood test. I was told the surgery would contact me if anything was amiss. I left armed with a spray for my ears.
I heard nothing until I returned with yet another case of itchy ears a month later. Seeing my own GP he angrily reprimanded me for not responding to their letter calling for me to contact the surgery following my blood test results. It had revealed an overactive thyroid. I had lost yet another stone in weight but the swelling ankles persisted. I requested to see the same man I had paid to see privately but in his NHS post. My GP then became furious that I had used a private insurance and tried to make me continue in the private sector.
I stood my ground and successfully obtained an appointment within his NHS clinic. I had dropped from 14st 7lb to 12st in under two months and eaten for England. My endocrinologist confirmed thyrotoxicosis with a goitre and toxic nodule plus a heart murmur and then prescribed carbimazole 20mg but I had an adverse reaction to this.
Warned that it was vital not to await a GP appointment, I presented myself at the GP surgery for a white cell count as instructed. My GP was obstructive and did not respond to my initial enquiry made by letter 5 days later. Then the blood was "lost" in transit and the tests had to be repeated but he changed the test name on the hospital's envelope.
Three weeks later I was still no further on. In desperation I secured an appointment at the hospital, where my carbimazole dosage was halved.
I now had problems with my liver and a gastro-enterologist diagnosed intra-hepatic cholestitis, not preliminary biliary cirrhosis, as thought. An irregular antibody had been discovered in my blood, so I then saw a haematologist who harvested bone marrow and gave me the diagnosis of monoclonal gammopathy of unknown significance (MGUS) - MGUS is a condition where the body makes an abnormal protein, called a paraprotein, that's found in the blood. It has the potential of becoming a myeloma.
Depression and poor self-esteem has engulfed me ever since. My consultant has left and I have seen nothing but junior doctors ever since, a different one each visit. My carbimazole was ended in July 2009 and the plan was to have radio active iodine treatment three months later. This plan melted into the ether and it was ME who instigated the RAI. I'm back up to almost 14st again and the RAI was administered June 18th. I am desperately hoping this will sort my problems.
I know that once thyroxine has been started I will have to work jolly hard to regain control of my weight. This has been a journey from a size 12 to 22, from 10st 3lb to 14st 7lb, to 12st and back to 14st. The muscle wastage has left me weak and lethargic, the mood swings from depression to high jinx and back have left me exhausted. I am no longer a fun-loving person, but a recluse who dislikes going out, hates buying new clothes unless they are super stretchy and avoids photographs at all costs. This has all but destroyed my relationship. I feel thoroughly overwhelmed by home, work and run of the mill issues, which once I would have taken in my stride. Thank goodness I had the courage to use my savings and go private. I cannot think where I would be now, if I had not.
If anyone had told me that thyrotoxicosis was a much greater issue than weight problems, I would never have believed them. This has been a truly devastating experience. Let's hope thyroxine can help to mend things. I'm sure other thyroidians have had a much more positive experience than my own. I only hope I can look forward to a return of some degree of normality.
Update – 26th March 2012
The hospital finally prescribed 50mcg daily of levothyroxine, instructing me that this would be adjusted and monitored by my GP. Feeling quite unwell, I visited the surgery only to be told nothing would be altered for at least 2 months. The autumn came and went and I was struggling with walking. My legs were painful and swollen. Blood tests indicated I was on ‘the correct dosage’, but I remained unconvinced. I was heading up to 14st 7.
In desperation, I dug deep and returned to my private endocrinologist. He informed me I had retained the smallest degree of radio active iodine and as I was on the lowest dosage, the RAI perceived it had not finished its job…so zapped it out.
By now, I had effectively been six months without any thyroxine on which to function. I was getting in trouble at work, struggling to process information. The endocrinologist told me the thyroxine deprivation had caused a cognitive impairment. He proceeded to address this by doubling my medication immediately and increasing it by 50mcg every fortnight until I was on 200mcg daily. A letter was sent to my manager advising that this condition comes under the Disability and Discrimination Act 2002 and adjustments to my work schedule may need to be made, albeit temporarily. This was ignored and my workload was increased by 30%.
On the thyroxine front, I felt wonderful. Hair loss was reduced, my skin looked better and gradually my legs became less swollen and almost pain free. In 2-3 months I should see an improvement in brain function too. The thyroxine resistance was no more. I knew I would not stay on 200mcg, but was horrified when after only four weeks, my GP cut my dosage to 150mcg. He informed me” a Government study has indicated that giving people like you thyroxine is a waste of time. It doesn’t make any difference. ” I returned to my private consultant who wrote a letter advising my GP to keep me on 175mcg and not to allow TSH to fall below 0.4. This would hopefully appease his concerns re falling foul of Government guidelines.
My weight was still on the increase. I would drop a few pounds then regain it plus a notch higher. My medication was cut to 125mcg, my body responded with weight gain. I was not coping with work, our service was facing redundancies and this was not helping.
I approached my GP regarding my weight again. After much deliberation, he referred me to Positive Moves; a scheme to get older people to make lifestyle changes - More an Academic than an Athlete. I agreed to give it a go. I was told I needed to do something about my weight as my BMI was 36.8. I should go on an 800 calorie a day diet, which was quickly opposed by my trainer. In response, the GP then said not to exceed 1000 calories daily. I attended the gym sessions 2-3 times weekly, followed a strict diet and at the end of the 12 weeks hit 15st.
In the meantime, I had been reading a book “How to Cope Successfully with Thyroid Problems” by Dr Tom Smith. I had noted that some patients did not convert T4 to T3 effectively and this rendered them unable to lose weight, although blood tests would indicate the thyroid as being stable. This is me I thought! I requested the GP try me on T3. He agreed but said I needed to come off the thyroxine over a fortnight.
His holidays, my holiday and a lack of appointments saw me SIX weeks with no medication and other practitioners in the surgery unwilling to even give me my regular prescription. On his return, my GP just put me back on 150mcg levothyroxine, which has been cut again to 100mcg.
When I said about my weight he told me, “Your weight has nothing to do with the thyroid. It’s a misnoma. The thyroid has nothing to do with weight. Some people are fat. Has it ever occurred to you you’re just a fat person?” l sat in my car and sobbed.
I still go to the gym. I’ve changed my GP and now attend a new practice. I have yet to see if things are any different there. I cannot do the cardio-vascular exercise, so we continue to do balance and coordination work, which has strengthened my ligaments and stabilised my joints. I just recover from my first session of the week in time to be ‘pulverised’ again three days later.
Today I weighed in at 15st 5. I’m off to post back size 20 skirts I sent for last week. My senses of taste and smell have disappeared and food is tasteless, so I eat very little. My hands, feet, legs and face are puffy most days. My shoes hurt, my clothes don’t fit and I had little choice but to opt for redundancy; so I no longer have the funds to keep buying a new wardrobe of clothes…if I could find any that fit properly.
When will this country stop playing the numbers game and start listening to the patients and the consultants? When will they let the Consultants do their job instead of hampering them? I want to get on with my life and be healthy, not be a burden on the NHS. I want to take responsibility for my state of health. Give us thyroidians what we need and we can lead a normal productive life!
I struggled through school years with a lack of concentration and frequent overtiredness, more so at secondary school. I often said to my mum that I felt my heart rate was a little faster than normal, which she used to say was just part of growing up and that it was something young people had, so not to worry. I was also very skinny and scrawny looking as a teen.
I was often in arguments with my parents, more so my dad, about my excessive sleeping and inability to get up in the morning.
It was when I was 18, I went to the doctor to get some antibiotics for a bad cold. He checked me over, and then took me into another room and told me not to panic. He asked me if I had taken drugs, to which I answered innocently, paracetomol. He meant amphetamines, cannabis etc, but i was none the wiser. My heart at rest was doing 180bpm. I was taken to hospital in an ambulance, and upon investigation through blood tests etc, it was determined my thyroid was overactive and as a result my heart rate was fast. They carried out two shocks, whilst under anaesthetic to slow it down, alongside Carbimazole and if I remember rightly, Propafenone. I was kept in for3 days and then told to take 2 weeks out convalescing. I came off and on the Carbimazole over 3 years and each time the Thyrotoxicosis returned. It was then suggested to me to carry on again with the Carbimazole, or try surgery or radioactive iodine. I opted for the latter, which held a 1 in 4 chance of making it go underactive. 3 months later it did. I felt cold no matter how many layers I had on, very slowed down, hoarse voice, outer eyebrows falling out etc...I went back to the doctor who confirmed that it had now gone underactive. I was put on Thyroxine and soon after was well again. I have an annual check now and levels have remained in order for a number of years now.
I presented with atrial fibrillation in 2005, which the cardiac consultant suggested could be related to the thyroid troubles I have had. I have undergone many cardioversions and 2 ablations to correct this, and am once again well 5 years on. Just on beta blockers and aspirin therapy forevermore!
Anyone reading that has recently been diagnosed with hypo/hyperthyroidism please do not worry too much...science will take care of it and make you feel better again soon.
I was 28 years old when I was diagnosed with Graves' Disease (a type of hyperthyroidism) in 2004.
I have 3 children now 14, 10 & 7 years old and I have a wonderful husband - we have been married for almost 13 years.
Before I was diagnosed I had been feeling lost for sometime - I say lost because I just didn't feel like myself anymore. I often stayed in bed feeling unwell. I continued on like this for a very long time until, one day, a teacher at my daughter's school pulled me to one side and told me how ill I looked. She asked if everything was alright and I said yes as I was still not aware that anything serious was wrong at that point. I had been to the doctors on many occasions, complaining of sore throats, but they always said it was a virus. I also told them about the headaches and feeling low all the time. It was at this stage I was told to fill in a questionnaire about depression, which I did and of course it came back normal. There was never any mention of thyroid disease.
Then one day in November 2004, when I was standing sideways on to my mum (she's an RGN), she noticed how swollen my neck was. I always wore my hair long and down but this day it was tied up. I turned to her and said, "I can't stand here Mum, I don't feel well". With that she took me later that day to my GP. By this stage I had moved to a new town so had a new GP. I walked into his room; he took one look at me and said, "Graves' Disease" before I had even spoken. I had large bulgy eyes that stared at you, a large goitre, palpitations, fast heart beat, sweating, my hands were shaking and I was so very weak I couldn't even find the strength to open the door when asked. I was very frightened as I had never heard of Graves' Disease and knew very little about the thyroid gland.
I was sent up to the John Radcliffe hospital that evening for further tests. My levels were serious - I was being poisoned by my own thyroid gland and my white blood cell count was extremely low. My normal weight had always been around the 91/2 stone mark but when they weighed me at the hospital, it showed I was now just under 8 stone. I couldn't understand this as my appetite was good - I always felt hungry. I had to stay in hospital that night and be monitored. I was told how ill I was and very lucky I had seen my GP that day as 'thyroid storm' can often occur at this stage (a life-threatening condition resulting from untreated Graves' Disease). I was put on carbimazole and propranolol.
Over the next 2 years I was seen in the endocrine clinic at the John Radcliffe hospital on a regular basis. My levels never returned to what they call normal. I was so very up and down. I didn't recognise myself anymore and I stayed at home most of the time – I just didn't want to go out. I remember walking into Tesco's one day and thinking everyone was looking at me so I turned round and walked out. By now my eyes were also painful (thyroid eye disease). It didn't matter how I slept or what drops I used - nothing helped. Because of how bad my eyes were, radioactive iodine was never an option for me, so my goitre just grew.
In April 2006 I had a total thyroidectomy. I guess I was lucky that my levels had calmed down enough for them to operate. The operation went well although I felt very strange afterwards. My calcium levels were very low and this took a while to get right again.
In January 2009 I had an orbital decompression to both eyes at the same time. I had to wait 2 years, as this is how long after the thyroidectomy it took for my levels to get to what they call 'normal'. The surgery to my eyes was done up through my nose so I have no scars which is great.
I don't think life will ever be the same again - you can't get those lost years back. I am so lucky to have had such a wonderful husband who stood by me. He has said it's as if he lost me for a while and finally now I have started to come back. Graves' Disease takes you away to a horrid place, almost like a black hole. I thank God I came back.
Back in 2004 information on Graves' Disease was not good - I didn't have access to the internet then and the books were far and few between. The doctors were all fascinated with me at the endocrine unit because of my age - students would come from other departments to see me!
Treatment for thyroid disease here in the UK is very different from that in the USA where I have met several thyroid patients on Facebook. People in the UK need to be more informed about this illness. My children had not even heard of the thyroid gland.
If I can help in any way, then please contact me as I now feel I could make a difference to thyroid patients and their families.
I have just come across your site and would like to offer a contribution. Unfortunately mine is not a success story. Shortly after my son was born in 1989, I started to feel ill. I put it down to being a new mum. I didn't complain in case anyone thought I wasn't coping with motherhood.
In the ensuing months I can only say I went through a personality change -mood swings, irritability, intolerance to heat, palpitations etc. The only upside was that I lost weight and rapidly which, at the time, was great given I had just had my baby.
The crunch came when I was sitting having a cup of tea and I couldn't hold the cup and saucer because I was shaking so much. I went to my G.P. and when my bloods came back I was thyrotoxic.
Initially, I was given beta blockers, referred to an endocrinologist and then given carbimazole. Unfortunately, these were not successful for me and ultimately I required the radio-iodine treatment. I hope things have moved on since I had that treatment because, I have to say, it was the most scary thing with little information available apart from a leaflet telling you, that you had to be isolated for a few days. At no time did anyone mention that I would need to be on thyroxine for the rest of my life.
Well, here I am twenty years later having been on thyroxine since three weeks after the radio-iodine. I have never really been stable. I am not the same woman I was before I had thyroid problems. In my opinion, it is the most underrated illness I know of. It can be totally soul-destroying trying to live a normal life with this illness. People in general don't understand and get fed up with hearing a myriad of complaints about aching bones, weight gain, fatigue, skin problems, hair problems etc. let alone the mood swings and irritability.
Let's be fair, who likes a moaner, especially when there are people far worse off health-wise. The truth is, we just want to feel well, be what I call in control of ourselves, be able to wake up each day without thinking, "What am I going to be like today?"
According to the professionals, taking thyroxine should sort me out. Well, it doesn't and never has. In fact, I had my bloods done a few weeks ago and I am underactive at present. Don't know why this happens every so often although stress seems to play a big part - although I am told that it shouldn't make a difference. I have had to increase my thyroxine and it's making me feel lousy.
Despite being told it can't happen when you up your dose, I have actually gained seven pounds in two weeks and, no, I am not eating more! That in itself, is depressing without all the other factors that go with being underactive.
My son is now 20. He lost his dad in June this year to leukaemia. I owe it to my son to be the best I can be, and the healthiest I can be and I will do everything I can to sort this thyroid situation out once and for all.
Hence, I am ordering full bloods including T3, T4 and adrenal tests on-line and see where I go from there.
I think it was January 2005, 4 months after my daughter's birth, that I started to lose weight and thought "fantastic" as I was going to the gym. I used to be a 26-28 dress size and weighed 18 1/2 stone.
Working full time and looking after my daughter, I felt really run down. I would often have trouble sleeping, about an average of 3 hours a night, and I felt myself getting agitated at work with pretty much everyone. I started to feel anxious about anything I could think of.
I stopped going to the gym but noticed I was still losing weight at a ridiculous pace. I went to see my GP, who advised that it might be because of Post Natal Depression, which I accepted.
March 2005 - it was my brothers wedding and everyone mentioned how "thin" I was looking. I thought nothing of it.
By June, some relatives who I saw on a 2-3 monthly basis failed to recognise me. My colour has changed, my eyes looked as if they were out of their sockets. My speech was slurred and I couldn't hold a conversation without being anxious about what I should say.
Work was getting increasingly difficult because of a lack of concentration, anxiousness, paranoia. I used to call in sick nearly every week for a day or so - I just didn't feel myself. I'd wake up in the morning and start shaking vigorously.
An incident at work made my heartbeat shoot up and caused a bad anxiety attack. I was taken to hospital in an ambulance in front of my work colleagues - my heart beat was touching 160 b/pm.
I noticed that my ankles were swollen so again went to my GP who advised it could be because of the pregnancy, even though I hadn't suffered swollen ankles. I again accepted this as an excuse. My throat had even swollen, making it difficult sometimes to swallow food.
By August, I moved from working full time to 16 hours a week and even that was a drag.
I started back at University in September part time to get over my boredom of not being able to work.
November 2005 - I was at the University gym with a friend on the treadmill, when I passed out. (I had gone from a size 26 to a size 12, and from 18 1/2 stone to 9 stone 6lbs.) Again, in an ambulance, my heart beat reaching 175 b/pm.
After tests, they told me I had atrial fibrilation, a condition where your heart effectively works overtime. A demonstration by the doctor with an elastic band changed me completely. He said "imagine this elastic band, stretching to accompany the force you are pulling it with. Do it too quickly, too often, the elastic band will snap, which is what happened." He said the same thing was happening with my heart.
I went to the doctor after being discharged from hospital. He ordered blood tests which showed I had hyperthyroidism.
As an emergency case, he referred to the Endocronology Clinic. The consultant told me the normal range for thyroid is 9-25 with anything less than 9 being underactive, anything more than 25 being overactive. My results were 154. She said that the swollen throat is, in fact, a goitre.
I was immediately put on Carbimazole and Propananol. They wanted to operate but due to the Atrial Fibrilation, my heart would not be able to cope. Work stopped completely and my mother had to look after my daughter full time.
After taking the medication for about 3 months, I stopped taking it. My weight increased, my thyroid levels came down and the size of the goitre had also shrunk.
I'd been on the waiting list 18 months for a thyroidectomy. By the time I went to see the consultant, he advised me that I didn't need the operation and that my condition had "sorted itself out".
3 years later, I'm back on the medication and feel that I was better not taking it. It was only when I passed out running to the kitchen to switch off the gas cooker that I realised how serious my condition is.
I can only do moderate exercise because of the Atrial Fibrilation. My swollen ankles play havoc every single day. They still do not know the cause of it.
My doctor has upped my doze of Carbimazole to 100mg daily, and Propananol to 75mg twice a day.
This condition has severely changed my life. I'm now 12 stones, and a healthly size 14. The weirdest thing is that I was able to do more things when I was overweight.
I don't think I'll ever be stupid enough to stop taking the medication, especially for the Atrial Fibrilation.