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Case Studies - Hypothyroidism

sharing storyWe 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

My first encounter with thyroxine was in 1984 following the birth of my third child. I had the most awful splits in my fingers which were so bad I could not bear to wring out the terry nappies my babies had used. A private visit to a skin specialist resulted in the prescription for thyroxine. I took this for a few months and then, on a routine visit to the doctor, was told not to take it any more.

Was there a downturn in my health after this? It's quite difficult to remember that far back. However, my periods became very heavy and painful and I had a scan to check for fibroids (none were found). Following the birth of my sixth child, I was very poorly and had to have my gall bladder removed. Then, in the same year, I lost my mother (aged 56) to cancer. From this point, I seemed to be a frequent visitor to the doctor with sore throats, allergies, asthma and sinus problems.

I had suffered from constipation since a young child, despite having a diet containing bran, fruit and vegetables. I had also been diagnosed with Stills Disease (a juvenile form of rheumatoid arthritis) aged 9. When I began suffering various aches and pains in knees, shoulders, elbows and wrists, I thought arthritis was rearing its head again. I mention these as pointers that may have resulted in an earlier diagnosis.

When my husband put his arm around me and I couldn't stand the weight of his arm on my ribs, I again visited the doctor. I have omitted to mention the weight gain, the lack of energy, the dry hair, the brittle nails, the bags under the eyes, muscle cramps… I could go on.

I read an article about a woman who had been treated unnecessarily for various conditions when she was, in fact, suffering with a thyroid condition. The thing that alerted me was the mention of splits in the heels, which, of course, I had suffered with for years. So I started to look into the symptoms of an underactive thyroid. Surprise, surprise! I had one or two.

Following various blood tests (all showing normal levels), I was persuaded to try antidepressants. When I felt ten times worse after taking these, I asked my GP to refer me to Doctor Gordon Skinner who, finally, to my great relief, looked at me and said, if I wasn't hypothyroid, he didn't know who was. I can't begin to describe the relief I felt. To know that there was, in fact, a reason for the aches, the pains; that I wasn't, as I'm sure even my husband had begun to think, a hypochondriac. I was, in fact, hypothyroid.

After taking the Levothyroxine, starting low and gradually building up to 150 mcg, I have felt a marked improvement in myself. I have more energy. I'm still finding mornings difficult but, once I actually get going, I'm OK. I'm still struggling with the weight, although I've managed to keep it stable and haven't gained any since taking the thyroxine. My hair is still dry but does, at last, seem to be growing.

I was advised to reduce the thyroxine from 125 mcg to 100 mcg but found that several symptoms came back with a vengeance eg hair loss and muscle cramps. Fortunately, my GP agreed to let me return to 125 mcg – which seems to make a big difference. What I find most difficult is that I have lost so many years to this problem; my youngest three children have certainly had a different mom to the one the first three had. I don't understand why doctors are so happy to hand out antidepressants, but do not even consider thyroid conditions and a trial of thyroid medication when there are so many symptoms present.

24/11/2010

I felt sick and wiped out all the time every day. I felt I was struggling up a mountain with a weight on my back. Then one day I took myself to the well women clinic thinking I may be pre-menopausal. They did my bloods and found I was hypothyroid.

My GP put me on 50 mcg thyroxine then up to a 100mcg. Things got so much better. The weight had been lifted from my shoulders and I was happy again. However, after about 4 years I felt ill again tired and achy and sick, had to re adjust my thyroxine down then up like a yo-yo.

My bloods are never the same every time they are taken. I get a period of feeling well then it all goes to pot. Also I've been allergic to certain types of thyroxine. Have found TEVA make suits me fine.

I feel my GP does not realise that I need to adjust my dose according to how I feel – not my blood results. I think this is a serious message that GPs have to know so that we can work together.

July 2010

I have Congenital Hypothyroidism. For those who don't know, congenital means I was born with the thyroid problem, which is rather uncommon.

My mum noticed that from about a year old I wasn't developing properly. I had no appetite but drank lots of juice. When I did eat, I couldn't eat very much and my stomach stuck out. I wasn't growing, my voice was deep, my legs hurt, I was crying for no apparent reason and I was depressed. My hair was coarse, I appeared to trip up very easily and I dropped stuff without any reason. The list is too long to state here really. My mum took me time after time to the doctors but they wouldn't accept she knew something wasn't right. They accused her of being neurotic.

Eventually, when I was about 4 years old, one doctor finally listened and referred us to a specialist, Mr John Buckler, at Leeds General Infirmary (it was and still is a teaching hospital). After examining me and listening to Mum he ran tests and said he felt he knew what the problem was - Congenital Hypothyriodism. After this was confirmed, I had to endure frequent visits to the hospital as an outpatient where I had my height and weight measured and blood tests taken. I even had photographs of me taken without clothes on to show my belly etc I was prodded and poked, had x-rays taken. On and on this went.

All during this time they upped my dose of thyroxine as it was needed. My parents were told that as the diagnosis was so far on in my life I would have severe learning disabilities so would be better off in a special school and I may have cretinism. They told her that I may never fully develop.

I went to a normal school, and yes, I was much slower and had major problems learning to read and doing maths. In PE poor coordination meant I couldn't catch the netball or hit the rounders ball etc. I also got bullied all through school.

Eventually, I was able to stop going as an outpatient to the hospital at the age of 18. I now only have a blood test once a year at my GPs. I swear I have no blood left!!

The upshot is that I did develop. I am a relatively 'normal' person as opposed to the cretin with severe learning disabilities that would never amount to much!! I passed my school exams and even have a couple of diplomas.

My appearance is such that unless you know the condition well you would never know I had it. I have a much longer story than this but there isn't enough room for it. I do still have some of the symptoms such as my eyebrows and eyelashes fall out and take ages to grow, my hands still tremble, I get headaches but not as often as I did, my coordination is still a wee bit out some days. I still cannot ride a pushbike though!!

I have had a hell of a journey and am still on it. What many people do not realise is that hypothyroidism is classed as a disability under the Disability Discrimination Act 1995 - this protects you from employers and other people treating you unfairly in job applications, in the workplace and in other areas of life too. It is a very serious condition yet I can lead a reasonably normal life, but the condition is always going to be there!!

31/10/09

I just felt I would share my story in the hope I can help others.

I had repeated bouts of thyroiditis, my consultant said the disorder was very rare and conventional medicine really had no answer to the problem. I was on steroids and anti- inflammatory drugs which caused massive problems to my stomach.

I was pretty much at the end of the road, so my consultant told me to try acupunture/Chinese medicine has he'd heard it could help cure me.

Anyway, to cut a long story short I am now completely cured and back to full fitness indeed my fitness levels are pretty good for someone in their thirties.

I continue to take herbal medicine over the winter which seems to act as a barrier to infections so I've not only recovered I'm now getting stronger than before I was ill. It was like a miracle.

My life really wasn't worth living with the condition I had. Sadly this care is not available on the NHS and cost me a substantial amount of money.

I hope in some way my story will enable you to share with the powers that be that Chinese medicine works for this condition nothing in our own medicine could get anywhere close to controlling or curing the condition.

Just hoping to help others
Claire

26/02/2010

I am 50 years of age and I have, finally, just been diagnosed with an underactive thyroid.

For the past few years I have  become intolerant to more and more foods and drinks. I first went off milk, cereals, caffeine, carrots, tea, soya, pasta and even my 'soul food' - bread. I also have problems with toothpaste!

The symptoms I got when I ate any of the above were a nasty sicky lump in my throat, stomach pains, constipation, no energy, and irritability.  Regardless  of what I ate I was unable to think straight, had tired eyes & I also suffered  from back & leg pain and felt cold a lot of the time.

Although I was diagnosed with IBS in 1983, I felt there was something more to  it than that, especially as for the last year these symptoms have got  progressively worse, and I have been literally starving myself  for the past  six months, because everything makes me feel ill.

My vision is affected and also my memory -I can't remember the simplest words sometimes.  I'm so tired that even sitting down isn't good enough - I have to lie down, and if I sleep I wake up just as exhausted.

My GP referred me to a gastro-consultant, who put me through a flexible sigmoidoscopy, without even seeing me. It was excruciating but it came back normal. Hey, I haven't got cancer - so I should be grateful right?! 

When I finally got to see the consultant, 4 months after the tests, he prescribed anti-depressants, telling me they were pain killers - I haven't taken them. He confirmed IBS (which I had included when I filled out the pre-test forms) and then he discharged me.

The consultant did, however, order some more extensive blood tests than my GP had done, including a thyroid antibody test which came back off the scale. However, my GP didn't understand the test results (he thought my thyroid was overactive) so he ordered repeat tests. He said, "You don't look like you've got a thyroid problem" - much the same attitude as for one of the other people on your website.

When I went back to my GP for the repeat test results he told me they were normal. Then after re-checking he reluctantly agreed that my antibodies were slightly raised although he told me that this is normal for "women of my age"!!!!!!!

I have been going back and forth, telling him I can't eat but, because I haven't lost any weight, I think he thought I was lying. I told him I felt that my metabolism wasn't working and I burst into tears every time because I just felt that no-one was listening to me. He said: "Michele, this isn't like you. I think you need to take depression tablets." He prescribed some but I haven't taken those either. Prescribing depression pills for women still seems to be alive and well in our country, as it was for my mother's and grandmother's generations. I had hoped that this practise had been re-thought by now, but obviously not.

You would think the fact that I was starving myself but not losing weight, and that I was in constant pain, might have alerted them to check out my thyroid. You would think that bursting into tears more often than usual, would also maybe trigger some flash of inspiration?

Unfortunately, I had done so much research into so many medical conditions on the web that I had overlooked thyroid and I also think the original thyroid blood test was probably done by mistake because the consultant actually asked for a gluten intolerance test to be done but it never came back. So that is the most fortunate mistake ever, for me … hopefully!

The upshot is that my GP started me on 25mg levothyroxine. My stomach-ache went after a few hours on the first day and my throat lump wears off by mid morning each day if I don't eat. I now have some energy until about 2 o'clock in the afternoon and I can also think clearly until then.  However, after that the energy drains out of my body- I physically feel it go, like water down a drainpipe, and the fuzzy head comes back.

So, I'm still in a position of not being able to eat during the day, because if I do eat in the morning the symptoms come back by lunchtime. At the moment I don't eat until I come home from work, and then it doesn't matter so much - at least I can get through a day at work.

On the plus side, I am losing weight at long last and I do believe these pills are little miracles. I also have my personality and sense of humour back!

To feel normal for at least part of every day has made me even more determined not to go back to that hell I was in before.

I only hope my GP will let me increase the dose until I get to the right dose to keep me symptom-free all day. The only thing the pills haven't helped is the feeling cold and the pains in my back and legs, but here's hoping!

13/06/2009

Progress Update - January 2010

When I wrote my original letter to Thyroid UK I was full of hope an optimism, unfortunately things have taken a back slide since then.

My stomach problems are greatly improved and my concentration seems to be OK most of the time, however………

I am now taking 150mg of levothyroxine. The first two increases to 50 and then 75mg kept me feeling energised and well for part of the day which took me up to about 6 weeks of treatment. But I kept feeling a real dip of energy and a relapse of the stomach and concentration problems after about 3 weeks of the higher dosages.

After 75mg every subsequent increase has made no difference to my energy levels, I feel drained all the time and sleep a lot! My stomach is still better, I can eat most things again now with only a few no, nos. But I have all the other aches and pains in my back and legs and the occasional bad stomach.

I don't feel well and seem to be susceptible to picking up colds. The last time I was off sick from work with a cold, my employers became less than sympathetic and rather than allowing them to subject me to a disciplinary process I decided to resign.

I am in two minds about my decision, I do feel relieved at not having to drag myself into work but I also feel a little worried about our drop in income, being stuck at home all the time and I miss my colleagues. I don't have the will or the confidence to seek other employment at the moment and so now I have re-introduced depression to my list of woes.

I don't think that increasing my dose of levothyroxine anymore is the answer to my problem, as the last several increases don't seem to have made much of a difference. I sometimes wish I hadn't had the glimpse of how I can feel when I'm well that the medication initially gave me, because I don't seem to able to get back to feeling like that and my doctor doesn't seem at all interested in sending me to a specialist. Because I am the age that I am and female, I think the medical profession expect me to continue on feeling like this, it's just my age isn't it? Wrong!! I know it, but I don't have any fight left in me.

On another note, the weight that I was able to lose for the first time in many, many years has all crept back on and I am totally disheartened.

I'm sorry to be so negative, I thought I'd be really singing and dancing by now, but I'm not. What can I say? If by some miracle my situation improves I'll keep you posted, but I think that generally the medical profession is so ignorant of so many conditions, they're overwhelmed and have forgotten the basics of really listening to people instead of reading computer monitors displaying data that is neatly squared away into various pigeonholes.

Lyn:  I have suggested to Michele that she asks her GP for a trial of natural thyroid hormone as this may work better for her.

12/01/2010

Progress Update - November 2010

I am much better now after nearly 18 months of being on levothyroxine. I did ask my GP if I could try natural thyroxine but he said he wasn't allowed to prescribe it and that doctors have been struck off for it.

My energy levels are better now, although still not great and I finally got up the confidence to apply for a job with a Manager I had worked with before. I love it, and my confidence is much improved and I feel quite well most of the time. I think it's true that it does take a couple of years to repair the damage that an underactive thyroid causes, and I think I'm well on the way. My diet is varied, the aches and pains are still there but only slight and I'm still battling the weight but I have hope now. And my health or lack of, isn't all consuming like it was.

Thanks for all your help and advice Lyn.

11/11/2010

I would like to thank everyone at Thyroid UK for all the hard work they have done to make a very important and informative website. I am extremely fortunate to have access to the internet it has been very helpful to me as has your website. I am sorry for people with no internet access who are struggling on.

I am retired and thought I had a very good knowledge of health problems, but I was completely ignorant of thyroid and had no idea of its function and its importance to one's health and well-being. I have enjoyed reading others' stories and now give mine, anonymously please.

Initially, the only symptom I had was hoarseness and the GP said there was nothing to worry about. About six months later it was painful to swallow and I was referred to an ENT consultant and after a barium swallow and pointing to the middle of my windpipe on the x-ray, he told me I had a post cricoid web in my throat which would have to be stretched. If I did not have a bronchoscopy I could choke.

Afterwards, he told my family, who had been waiting, that 'there was no web' and when he saw me he said there was nothing wrong with my voice-box or osophegous. When I went for my next consultation I asked if I could have another x-ray as I would like to compare what was on the original x-ray with my throat as it was now. He said no.

I went on as usual for another 9 months and then my stomach began to swell, as if pregnant, and I wasn't feeling too good and nauseas. I saw the GP and asked if I could have a scan - do I have something wrong with my ovaries?

He prescribed something for reflux (I did not take it) and said he would do a blood test and phoned to tell me there was nothing wrong - everything was fine

About 2 months later I felt a lump in front of my neck. The duty nurse ran her fingers down each side of the throat and said 'I cannot feel anything'. I said, "It is here" putting my finger exactly on the spot. I was going away and I paid to see another ENT consultant, who gave my mouth and tongue a very thorough check - everything was o.k. and it was probably reflux at night of which I was unaware.

Off I went on my journey. I had constant nausea and my colleagues commented that I was eating extremely little. On the fourth day I woke early feeling very unwell and I went to the local A and E department. The ECG showed a slight non-specific T wave abnormality. A friend said to me, "I think you have a thyroid problem" and I phoned my surgery for an appointment, which I couldn't get for two weeks! I told the receptionist to request a thyroid test as I had been to the A&E which I would collect on the Monday morning.

Events overtook me. At the airport to go home I had to request assistance from the first-aider and then went straight to the A&E on arrival. I was in the cardiac dept for 24 hours for observation. I had, again, all tests and before discharge, I had to run on the treadmill. I was discharged as 'Viral Infection' plus short episode of palpitation (of unknown significance) with no underlying heart damage or angina, but was given statins for high cholesterol (I did not take them as they made me feel unwell). On returning home, I was vomiting etc with a very worried family. For one week I was too, too ill.

I said to my husband, "No matter what, you will have to take me to get the blood test. I was there at 8 am and by 11 am my GP phoned and said you have an underactive thyroid, come immediately to get a prescription and I was to start at 25mcg. Fortunately I had a husband to get it for me and I asked to be referred to an Endocrinologist.

I have had pernicious anaemia for 15 years and I was unaware that it is recommended (I believe) that an autoimmune test be done annually. I last had one in the year 2000. All ten or twelve medical people I saw knew of my anaemia but no-one did a thyroid check.

My TSH was 100.

I am now on levothyroxine — but that is another story.

3/12/2009

Levothyroxine - Progress Update

After finally being diagnosed with an underactive thyroid in 2007 (with a TSH of 100) I began on 25mcg for two weeks and graduated every six weeks till I reached 100mcg. I began to get palpitations and it was agreed I would remain on 75mcg (one at 50mcg and one at 25mcg) I was told by the endocrinologist my health would be back to normal in about six months.

Around the fourth month I began to have pins/needles in hands and weak arm muscles. It then progressed to joint pain in wrists, elbows and shoulders. It was painful to use my hands and I could not put my weight on arms to get out of the bath.

I saw a neurologist and had muscles/nerves checked in my arms and legs (also an Rheumatoid Arthritis check) but everything was ok.

I never felt well - was it because of the thyroid or levothyroxine (I was on no other medication before this)? I began to have a frequent elevated heart rate (not palpitations) but it did not last long enough for me to have an ECG.

One year after diagnosis I could only get out of bed with great difficulty. I had pain everywhere and it was very difficult to walk or stand as I was so stiff. I could only shuffle first thing in the morning. I could not bend; get into a car; onto public transport, nor in or out of the bath as I could not bend my knees (the ligaments/tendons were very stiff). My thigh muscles could not take my body weight when I tried to step onto anything.

Five months later I began to get palpitations and was prescribed beta blockers. I searched on the web for side effects of levothyroxine and on one saw that of around 72,000 entries 1% reported some of the side effects I had.

I read on another site that some people may be sensitive to binders/fillers and that generic levothyroxine can vary from manufacturer to manufacturer and batch to batch.  I did mention this to the consultant but had to continue as before.

Over the next three months, I began to feel I was beginning to recover - my strength was returning and I could get in and out of the bath unaided.

I began my next three months prescription and on the second/third day I began to stiffen up and pain returned. I was disappointed - also puzzled - what, if anything, was different?

I then noticed that the previous 25mcg I had taken was by a different manufacturer. It was a long shot but my GP gave me a replacement prescription and I found another chemist who stocked it. Thankfully, my pain and stiffness disappeared again. GPs usually only prescribe generic levothyroxine, not a brand name and it depends on what the chemists' stocks what generic brand you get.

I will now be very vigilant and ask what they have in stock before I give my prescription.

I cannot tell you how well I am feeling now and, when my other symptoms go, I will be on the road to a full recovery after more than two years on levothyroxine.

NB: Years ago when I worked in a geriatric hospital, the Consultant told me that if I ever had a doctor who said, 'it is age related' then I should change the GP. Good advice, I think!

14/01/2010

I was diagnosed with an underactive thyroid 3 years ago. I am currently taking 125 micrograms of Thyroxine. I have always eaten a healthy diet and tried to lead a healthy lifestyle.

I have been pestering my doctor for help as I never felt well and continued to have worsening symptoms. My blood was regularly tested and I was told that my dosage was correct. I was offered treatment for depression but since I continued to have a reasonably positive mental attitude I refused. However I did feel that my bodily functions were depressed and my short-term memory let me down on numerous occasions.

I followed my doctor's advice and took my tablets before breakfast. I did, however, notice that the instructions on the packets of tablets differed slightly.

The information which came with my 100 microgram pack of tablets advises: 'Swallow the tablets with water, before food'.

The information which came with my 25 microgram pack of tablets advises: 'The dose is preferably taken before breakfast, once a day', and then states, 'Swallow tablets whole with a drink of water'.

In an effort to find a way to help myself I contacted NHS 24 [the online health information service for Scotland] for any advice but was disappointed. The BUPA website also offered no suggestions as to what I could do. I also found nothing of interest on this Thyroid UK website, or at www.Thyroid-Disease.org.

The British Thyroid Foundation website was a bit more helpful but it worried me when I read this:
Question: 'I am being treated with Thyroxine but still feel tired all the time. Why is this?'
Answer: 'As long as you are being prescribed the appropriate dose of Thyroxine any fatigue you are feeling cannot be attributed to the underactive thyroid gland. It is simple to determine whether you are receiving the correct dose of thyroxine by asking your physician to carry out a simple blood test measuring thyroxine and thyroid stimulating hormone concentrations in the blood.' I did not want to give up and feel defeated.

Then, three weeks ago, I discovered that in America people are advised to take their levothyroxine on an empty stomach 1 hour before food and also not to take any other medications or supplements at the same time but to wait about 4 hours.

I had never been given that advice here in Scotland. It was not made clear on the information leaflets which come with the tablets.

I decided to try it. Within 40 minutes my head had cleared of the fog I had been living in and my sense of smell had returned. 3 weeks on and, step by step, things are still improving.

So, what works for me is taking care HOW I take the medication, in other words simply following the advice that people in America are routinely given about how to take their thyroxine.

I have a friend who works in a care home who is instructed to give the people in her care their levothyroxine WITH their breakfast and another friend a district nurse who had not been given any guidance as to how or when her patients must take theirs.

I am angry about the ambiguous information which comes with thyroxine tablets in this country. It is vague and misleading. The sad thing is that just a simple change of the wording on the packets would make it clear that people should not eat for an hour after taking their thyroxine and should wait several hours before taking other medicines or supplements.

How many thousands of people may find some relief from their symptoms if only they were educated about this?

Please share my experience with others so that they can hopefully find some relief.

4/06/2009

Thank you for this opportunity, not only to tell my story, but to share in other peoples' stories. For the first time in a long time I do not feel like I am going mad! I am 28 years old and I was diagnosed with an underactive thyroid three years ago.

The biggest thing I want to say is that my thyroid condition has impacted on my quality of life. Tell my GP that and I am told that it is not my thyroid. My thyroid levels are fine. That's it, nothing else. They don't even look into what this 'something else' might be.

I am grateful for thyroxine because although I do not consider myself better, there are two things that have got better and even those two things make such a difference to my world:-

Firstly, my improved mental health. I hate that expression 'mental health' – it becomes a label. My childhood, teenage years and early twenties were riddled with depression, low self esteem and, if I'm honest, self-hatred. I wanted to die. I never felt like I was supposed to be here. I was so sensitive to everything and everything was not only my fault but the end of the world. It felt like there was a giant black hole in my solar plexus sucking the life out of me and that it had always been there. I was always tired – 'bone idol' was the term I remember hearing a lot. And very, very messy! It was put down to my age, low blood pressure and more - you name it, it was there.

In my late teens I ended up in hospital after attempting suicide and they toyed with a diagnosis of manic depression but I didn't hang around for the conclusion. About 6 months after taking thyroxine I noticed that the black hole had gone and I have just gone from strength to strength. I have had to learn who I am again because I am not that person you have just read about!

I am a very strong, intelligent person who can actually stand up for herself and not feel like a bad person all the time. That's new to me! I like myself and I can cope. Not only can I cope, I can cope with a lot. It feels good to say that. I tried to tell a GP that I haven't had any mental health issues since I have been taking thyroxine but he just gave me that look - the disbelieving one.

Secondly, my improved resistance to catching a cold. Seems strange but I was always the "susceptible" person. I would catch any bug that was going around. I was ill every Christmas and it was a running joke in my family. Even now family members will turn around and say "I hope you're not ill this Christmas!" I haven't been ill for the last two. Whatever I caught in the past would have me bedridden. I would have a chest infection every year, and when things were really bad, in the years before my diagnosis, I had throat infection after throat infection.

I was on antibiotics at least every other month for something or other but never got tested for anything. Just before my diagnosis they thought I had shingles!! Since I have been on thyroxine I have only one sickness absence at work. One in the last two years - I am so proud of that! Now, when I get a cold, I sound awful. I have had people tell me that I sound like I'm dying on the phone but I feel fine. That's great in comparison to how I used to be. It's a novelty that still hasn't worn off!

So how did I eventually get my diagnosis of being hypothyroid?

Well, at the age of 25, everything came to a head and, strangely enough, I got my diagnosis by asking for a second opinion on information I had received about my contraception. You see, until I felt that I had had some incredibly bad information about my contraception, I would never have mentioned weight gain to my GP- weight gain is common with contraception. I would never have mentioned the tiredness, or the "cradle cap" I had been having off and on since I was 14.

I had always been tired. So tired, I couldn't stay awake at work, even though I slept more than the cat. I was a lazy person. I would never have mentioned how vulnerable I felt - I had always felt that way. I would never have mentioned the emails I wrote that people couldn't read because they didn't make any sense. I would never have mentioned the fact that I locked myself out of the house several times, even though I was sure that the keys were in my hand (only realising they were not when I put my hand to the door).

I would never have mentioned that I would forget what I was saying mid-sentence – I would just go completely blank. Nor the bloodless muscles - remember holding your arms up too long to get the teachers attention? I would feel like that within seconds of doing most tasks! The doctors knew that I was in their waiting room every couple of weeks with something I needed antibiotics for.

No, it was the day that I did not have a rash but still had stabbing pains all over. The day that I remembered to ask what their little books said about my contraception and weight gain because it had never bothered me before. "Hmmm. Hang on, let's test your thyroid first".

Bingo! Say hello to my little friend levothyroxine. It's going to be a life long affair.

Still on the path to recovery – many symptoms that haven't yet gone away

There is nothing more frustrating than looking up thyroid problems in any format - internet, books, leaflets. You never really get the same information twice. When I first looked up thyroid problems on the NHS website and BUPA, I read that thyroxine or thyroid replacement hormones will make it all better, with perhaps an adjustment of the dose that may be needed from time to time, and so there are regular blood tests to monitor this. That's the general info. This picture of a straightforward recovery hasn't been my experience though. Like I say, things are better and I am eternally grateful for that, but I do not have the life of a normal girl my age.

These are some of the symptoms that still have a huge influence on my quality of life:

  • I would like to be able to stay awake past 11 pm. Being able to stay awake until 11 pm is great compared to the 7.30-8 pm that I used to fall asleep, but everyone is sick of me falling asleep on the sofa.
  • I also still feel really cold. I catch myself shivering like those tiny little dogs. I go to a DVD night at friends every week and take my own blanket because they started timing how long it took for me to ask for a blanket. Then I have to fight to stay awake because I am cold but I can feel the external warmth of the blanket.
  • And everything still hurts. I try and explain to the doctor and all that comes out is "it hurts to boil the kettle". What I mean is that it hurts to fill the kettle; it hurts to pour the water. It hurts to get up the stairs. It hurts to look for thing in my wardrobe. It's excruciating to try and sort it out. Like I said before, it feels exactly like it did in school when you would hold your arm up too long for the teacher but it feels like that within seconds. I get pins and needles in my arms every day. I've told a few GPs but they say it's not my thyroid - it's a 'circulation issue'. Not that they have ever looked into a circulation issue either.
  • Another thing - I cannot lose weight. I don't put weight on either. I was the same before I got hypo except that now I am twice the size. I feel uncomfortable - I am only 5ft 1in and I am a size 14. It makes my ribs ache when I am sitting down. I did lose a little weight for a little while. I managed that by only eating one meal a day and lots of exercise. That's not healthy.
  • I cannot drink alcohol anymore. Tell that to my GP and he or she just shrugs. That's nothing to with my thyroid either, they say. One drink will give me a hangover the next day and I can only manage that one drink if it is after a large meal. Just a few sips can get me well on my way if I have not had a large meal with it. So I just don't touch it anymore. I cannot tell you how irritating it is to have to explain why you do not drink; not that you know why because nobody has explained it to you either.
  • My ability to recall things is really poor and I have had to develop something akin to OCD to leave the house with everything I need for the day. My memory is fine. I can remember everything. I just can't recall it to communicate it to you. It seems to take forever to recall things. I have to rely on feelings so I am never certain about anything. But I think I have a good memory for about two weeks. After that it gets harder and harder. I hoard little things now so I can remember, otherwise I forget things about my life. Things I should remember, like people I have lived with or how many years experience I have. Things I can remember are very dark and distant and they are just snaps or flashes.
  • On the subject of memory, I have read in many places that an underactive thyroid can affect your memory so why, oh why, do they give you a tablet to remember to take every morning? From the moment I wake up it has to be in my head, tablet, tablet, tablet and if something out of the ordinary happens that thought is gone.... and then I can't remember if I have taken my tablet or not. It can be weeks before I remember again. If I have to change my routine I will forget most days until the new routine sinks in. Then I have to check my handbag 4 or 5 times before I get to the front door to make sure I have everything and one last time before I close the front door. Why? Because I forget that I have checked already until I see where things are and then I remember doing it a few minutes ago.
  • I don't want to disclose this symptom, but I will because I want to be honest and open. Abscesses. I get one every 6 months like clockwork. I hate them. They make me feel disgusting. The GP says that I am just prone to them but every 6 months like clock work. This has only been since I started with the recognised symptoms of an underactive thyroid and I think that I get them because my metabolism is not working fast enough to keep my skin balanced.
  • Recently I have started choking in my sleep and also sometimes when I swallow. My neck has become really uncomfortable and I have also been having breathing difficulties, which, I didn't know until I found this website, other people are experiencing too.

So, today I finally had my first appointment at a Thyroid Clinic. In my experience they are like gold dust - few and far between even though it is a specialist area. I was so worried that I would not be able to communicate my symptoms properly. People ask me questions and there is just nothing there to answer with. No 'yes' or 'no', nothing. The chap - I do not know if he was an endocrinologist or an ENT consultant - felt my throat and said that my thyroid felt soft which was a relief but, given my family history (my great aunty had a thyroid problem; her aunty had a goitre also) and the pain and the fact that I am on thyroxine, they tested my antibodies for autoimmune disease (I'm guessing).

Up until then I had only ever seen a GP so now that I was finally seeing some sort of specialist, I ran through the list of symptoms above that I could remember, just really quick. I had actually written a list and put it in my handbag but I forgot. He just looked at me sympathetically. I just really wanted to talk to someone who might have understood.

Now I am worried that my blood tests might show that my antibodies are high but my TSH normal and that I won't get anywhere. I would like people to know how scary it is going through things like this and how you feel like you are banging your head against a brick wall. It's a common theme, but how can so many things be wrong with you and yet it's still so hard to get a diagnosis and to get proper treatment?

I hope that my story helps people feel less alone. I hope, too, that it will help people to get health care appropriate for their thyroid problem and that we will all get a health care system that will listen.

 22/10/2009

Progress Update - November 2009

Well, as I said in my previous report, I got to see the consultant who felt my throat and asked about my family history and decided the best course of action would be to (insert drum role here) take a blood test. I was informed that he would send the results to my GP with a letter. I managed to quickly get in the other symptoms like the inability to lose weight, alcohol intolerance and most importantly the pain. I raced through them as it was apparent that my time was up and was met with that look. The same old "of course you do dear" look before being ushered out the door.

I later contacted the GP who came back with the same old "normal" but there was no letter from the consultant so I had to ring back a week later. My results were TSH 1.99 and antibodies less than 10. I cannot tell you how disappointed I was that the consultant only did a TSH test- I could have got that at my GP's and saved my holiday entitlement at work!! I called back for the letter and all that the consultant wrote was that my thyroid was enlarged and that he would see me again in 8 weeks.

I feel... I don't know to describe how I feel.... what is the point? What could have possibly changed in 8 weeks time seeing as nothing has been done?

That statement is not completely true, something has been done and will be done. I have signed the International Thyroid Patients Petition and become a member of the International Hormone Society – the International Thyroid Patient Organisation. I have found this website and posted my story.

I have also found the American site Stop the Thyroid Madness. I have always found American sites very informative but very different to the way things will ever be done in the UK but that site has helped me put words to a symptom I have been having difficulties with "Air Hunger (feeling like you can't get enough air)". My foggy mind just couldn't quite get there. I got as far as "it feel's like there is not enough air in the world"!

I have made a plan and my plan is to take a much more active role in my treatment. I have not had my next appointment through yet but when I do I am going to request a blood test the week before through my GP's surgery and have them test my TSH, Free T4, Free T3, TPOAb and TgAb so that I have the results ready for my visit to the consultant. At the consultant's I am going to request a combination treatment of T4 and T3 and what's more I am going to get it.

It took me three years to get to see a consultant and I feel so let down that they did not test T4 and T3. I honestly thought that a specialist would test all my thyroid hormone levels. Test everything to be on the safe side or is that too much common sense? It's funny, I had to see a consultant about tinnitus around the same time I was referred to the thyroid clinic. I saw the ear consultant first, who did a hearing test. The hearing test showed that I had a genetic hearing condition which I was not aware of because I had had it since birth and not known any different. Although he was certain of his diagnosis he sent me for an MRI just to make absolutely sure it was nothing else. How much does an MRI cost - £100's? How much does a thorough blood test cost?

At the same time I was also referred to the eye specialists because I had developed a xanthelasma above my left eye. (I know, I sound like I'm falling apart right!?!)  It is a condition where the body starts to deposit fat into the skin around your eye and shows as an odd white patch of skin. It is normally likened to high cholesterol but my cholesterol isn't high at the moment so they are going to remove the odd patch with a laser.

I have a sneaky suspicion.....given that your thyroid can affect your liver, which in turn effects your cholesterol, and given that I cannot drink alcohol anymore etc. etc....   that a combination of T4 and T3 will help my body work better than it is and stop it from coming back after it is lasered, or even make it go away before it needs to be lasered (as it would if they thought they could make it go away by lowering my cholesterol). It might not. A combination of T4 and T3 may do nothing for me what so ever but I would like the opportunity to find out. I think I have the right to have the opportunity to find out.

I'll let you all know how it goes.

20/11/2009

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.

 20/10/2009