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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

I had to give up my job in Social Work as I became very unwell with Chronic Fatigue. I could hardly function for many years. I was then diagnosed with an underactive thyroid. However, after many visits to the local hospital with my thyroid medication being altered, I still felt very unwell. I thank God I found Dr Skinner. He really did give me back my life. When I was put on a combination of T3 AND T4 everything changed. I started to feel better after so many years of being unwell. I never realised taking an additional pill (T3) would make so much difference. At last I felt well and glad to be alive. I dread to think what would have happened had I never met Dr Skinner. I will never be able to thank him enough. My husband also has had many symptoms of an underactive thyroid and has had about 4 thyroid tests at the local GP. He believes his thyroid to be underactive, so once again I got in touch with Dr Skinner and he has an appointment tomorrow. I think these SPECIAL doctors should not be questioned, as they are doing a wonderful job and making people well again, which in the long run will save the NHS a lot of money. I hope one day doctors of Dr Skinner's calibre in dealing with thyroid issues will be the norm. 1/4/2009

I am a 26 year old student nurse who can now actually think clearly enough to study! However, I struggle on a regular basis to keep myself feeling well, energetic and rid myself of horrible side effects of hypothyroidism such as constipation and bloating.

Before my gastro consultant realised I had an underactive thyroid, I had struggled with every day life to the point where I thought if this is my life I don't think I can go on.

Along with the side effects I was very puffy and swollen but constantly (for years) under a specialist due to severe constipation which was causing health concern. I was experiencing a lot of anal bleeding at this time which meant numerous anal examinations.

One consultant told me to drink green tea and that a girl of my age should not be constipated. My GP at the time told me I was fat - all very helpful comments!

I hardly ever left the house and it started to affect my work and I took too many days off sick. For a while I left work completely and my partner supported me! I was half dead!! Just the thought of doing something made me want to sleep. I woke up tired and fell asleep hours after getting up, taking any opportunity to sleep!

Doctors checked my thyroid levels via blood tests and were sharp in reporting nothing was wrong! I myself suggested having the test because many females in my family are sufferers.

Then, luckily, a great consultant treating me for constipation started my treatment of levothyroxine. 3 months later I was discharged from his care because I didn't need it!

I suffer from IBS due to the hypothyroidism but there was no need for treatment regarding a problem which had taken over my life! So now when I get my results I don't have confidence in my doctors and I am still symptomatic in the way of feeling washed out by the afternoon, sore and dry skin and puffy eyes. Therefore, (after always having a good diet) I am trying to improve this by eating foods which are high in iodine (which is good for thyroid activity).

I have to say it is very difficult to find out what foods are good for this and what are not. A specific, easily accessible information book or web page is needed for those suffering who, I know, spend hours obsessing over the internet looking for ways to improve their lives.

There seems to be a lot of unclear information out there. We need professional clear cut info.

I am always terrified that there will come a time when I fall back in my studies because I can't think clearly and am too tired.
At first ,I felt as though I was a new person, I have hair! I have eyebrows! I can think without feeling I'm going to fall flat on my face!

However, life is still an effort in keeping myself energetic and without handy, clear information it's a big effort. I now have bad reactions to Beechams (once leading to me going to A and E) and when drinking even a sip of alcohol since being on levothyroxine and can't find much info on any of this either. Am wondering if any others have found the same thing?

Lyn Mynott, Chief Executive responds:

Thanks for this case study Nicola. Just to let you know that, for the accreditation, all our information must be in a clear format without jargon so that's what we are doing now. It will be a little while yet, but once we have changed our information, it should be much clearer for everyone!

24/02/2009

I had all sorts of health problems since childhood, most clear in my mind was that since 3yrs of age I had no tolerance to the cold and had 'the shakes', as well as a dark melancholic mood even from my first memory, before I had any experience to draw from.

I had radiation treatment on my throat as a baby to remove a growth, in a foreign country and, in the UK, doctors dismissed this as causing my being generally unwell. Their tests showed I was border-line and they just said I was 'fine' and sent me on my way.

These general health problems got progressively worse - I had no energy, was constantly shaky and severely depressed. Eventually, they got extremely severe and I got what was later diagnosed as 'fibromyalgia' at 22 years of age.

Those years in my 20's were more difficult and painful than can be described, and I thought there was no 'cure'. Ending it all often crossed my mind. Anyway, by constant experimentation and research and self monitoring I came to the strong conclusion that many of my symptoms were hypothyroid. So, by accident, seeing a copy of the Thyroid UK newsletter and the private doctors listed inside, plus attending a talk on how ME/fibromyalgia seemed to overlap with hypothyroidism, I took the plunge.

The doctor I saw in London was willing to try different things. T4 didn't work at all and I had, previous to seeing him, tried Armour with little or no success. Finally, he tried me on T3 which, after finding Dr Lowe's protocol, he tried that and I felt something! Increasing the dosage, I finally found 140mcg to be the perfect dosage with no side-effects.

For the first time in my life I felt those horrible symptoms leave me, for the first time ever. I was 30 by this time and, of course, all those years of not being diagnosed had taken their toll on opportunities for life and career and, frankly, my life was still very difficult. However, the T3 at 140mcg was a building block to start and it improved me to the point of working full-time and having a good social life whereas before I couldn't hold down even a part-time voluntary job.

However, just in the last few weeks, my NHS doctor, who had agreed to prescribe me this medicine for the last 7 years, told me he 'wanted me off this', and was very angry and irate. I suspect it's because practices are under pressure to make cutbacks and T3 is more expensive - recently its price has jumped much higher.

So, here I am fighting the medical profession and the private doctor I saw 7 years ago is too scared to continue with Dr Lowe's protocol and has referred me to his new practice endocrinologist - who said I was an 'exquisitely rare' patient as I displayed no signs of thyrotoxicosis at all yet I'm on a 'dangerous' dose of T3.

He wants me to only take 60 mcg maximum a day, which is preposterous as any less than my 140mcg and I start getting ill. It turns out from research that there is only a straggling band of doctors left who are brave enough to treat and cure the patient rather than do what is conventional/old hat/increases the profits of the drug companies who monopolise the market with such as T4 and push my T3 medicine out- making it more expensive.

So, I am trying to fight against medical prejudice, based on lack of clinical experience/willingness to try T3 at the dose that works for such as me; though the endocrinologist recognised me as an 'exquisitely rare' patient, he will only treat me with less than half the dose I need. That is with what's deemed conventional - for average non-rare patients, a massive failing in logic and in effective treatment. A ludicrous contradiction, which has given me nights of stress/sleeplessness worrying I won't have the medicine soon that gave me my life back.

We are individuals. Practice should inform and mold theory not vice versa. Conventional 'theory' in endocrinology is a prison which these 'experts' mistake for irrefutable fact - a prison stopping many of us getting or maintaining our health. We are all unique and need tailor made treatment so we can break free from the tyranny of this prison. After all, if convention had been upheld always as fervently as this, we'd still be treating everything, including schizophrenia with leeches!

We must fight for the right to be well. I, for one, am not going quietly in the 'dark night'.
Cure - Not Convention, Freedom from chronic ill-health - not profit!!

5/2/2009

I just want to let you know that I have become well again as a result of the good advice on your website.

Last year I became increasingly tired, anxious and short of breath. This developed into palpitations and muscular and joint pain. I felt cold all the time and very low in myself. I visited my GP because of the palpitations - all ECGs were "normal". My blood tests were "normal" (including TSH). I was offered anti-depressants, which I refused. It wasn't that I didn't want to get out and do things, it was just that I physically couldn't. The GP blamed my weight and said I should do more exercise and "get out more". This last comment made me realise just what I was up against with the medical profession. I did some research and found your site.

I had the Adrenal Stress Index test done via TUK by Genova Diagnostics. It showed very low levels of cortisol, and reported that I was in "adrenal fatigue". I took the report to a total of 3 doctors (one GP and two specialists) who all said that the test was "outside normal medicine" and was unreliable. At this point I finally realised that if I was going to get better, it would be through my own efforts, and not through the medical profession. By then I was suffering from wretched fatigue, bad pains in my back and joints and sleeping poorly. I was also on Beta Blockers for the palpitations.

I read the advice from Dr Peatfield on your website and decided to order some adrenal and thyroid supplements (from the Nutri Centre). Within 2 days of starting to take them I felt the tiredness lift a little. I cut down on the Beta Blockers gradually, and increased the amount of adrenal and thyroid supplements. Within two weeks I felt human again - I had a feeling of "assurance" inside, the tiredness had gone almost completely and I was coping well with life's stresses and strains. The palpitations had gone and the pains were receding (strangely, the pain left my back first, then shoulders, then arms, wrists and fingers - as if it were draining from my body). Within a month of starting the supplements I was pain free, happy and healthy.

I reported the change to the rheumatologist "treating" me. He said I had had a "post-viral" illness which had got better by itself. Again, the medical profession failed to listen and failed to consider the possibility that I might have put things right through research and self help. Thank heavens for Thyroid UK! I truly do not know where I would be now if it hadn't been for the help and support on your site.

I intend to repeat the ASI in June. I assume it will show normal cortisol levels. If this is the case I will copy the "before and after" test results and send them to my GP and the two specialists I have seen, along with an explanation of what I did to fix things and the "chemistry" which explains why it worked. I'm no expert in hormones, but I've learned so much. The main thing I've learned though is to listen to my body and make adjustments if I need to. Despite my TSH tests being "normal", I responded well to the Nutri Centre Thyroid Supplement. When I felt a bit "overcooked" I stepped the dose back and felt better.

I now am setting about regaining my fitness levels which have dropped dramatically since my illness took hold. What really worries me is that there are lots of people out there who are losing their independence, mobility and quality of life because doctors don't understand this problem. Without your help I think I would be housebound and bedridden by now (as indeed is one of my work colleagues, who is still trusting of her GP and the numerous specialists treating her).

Next week, I have an Occupational Therapy consultation, booked by my GP to help me "cope with my condition". Despite phoning both the GP and the OT department and explaining that I am well, and being discharged by the specialists, I have been told that I should attend the appointment. Why is there such a focus on passing people from one place to another, checking things in isolation rather than seeing the person as a whole? Why don't they believe I am well? Once again, I will tell my story to the medical profession. I'll let you know the response!

Again, many, many thanks. I hope my story helps others to take charge and get their health and lives back.

5/2/2009

After the birth of my daughter in 1998 I just didn't feel right. I was unable to lose the weight that I had put in on my pregnancy. I had no energy, didn't want to leave the house and go anywhere or socialise with people and I felt tearful all the time. I just thought that it was having a baby and being a single parent with no family support that was responsible for how I was feeling. It went on for a couple of years and I didn't start to feel any better - at this stage I didn't visit the doctors as I didn't think that there was anything that could be done.

When my daughter was 3 years old I decided to return to education and started to complete a degree at night school while working part-time. I was still permanently tired and had no quality of life as when I put my daughter to bed at 7 I went shortly after. I was stressed, angry all the time and had no energy. My hair was falling out, my feet were cracked, sore and rough to the touch, I was always cold and still I didn't go to the doctors.

One day when I was sat in tears yet again wondering why I felt so rubbish, I rang NHS Direct and through answering a few questions was told it was likely that I was depressed. I then visited my doctor and told him what NHS Direct had said. He asked me a few questions and prescribed me anti-depressants. This went on for 6 months and yet I still felt bad, my mood lifted but the other symptoms persisted.

At no point during treatment for depression was I offered a blood test. I looked for alternative therapies in order to help me and had a course of acupuncture, which was amazing and did help me feel better although the symptoms were still there. It took my sister who had been for a medical in the USA (where she lives) and being diagnosed with hypothyroidism for a light bulb moment. My sister said that my symptoms fitted with her diagnosis. So, I went to the doctors and demanded a blood test and surprise, surprise, it came back that my thyroid was not working correctly and I started a course of thyroxine.

I needed to take 125mg per day but the doctor started me off on 50mg. I started to take the tablets and developed a goitre, so I went back to the doctors and he reduced my dose to 25mg. The goitre disappeared and I gradually increased my dose to 125mg.

I went for a blood test 3 months later and it came back as normal, but I still didn't feel "normal" and felt that the dosage was not sufficient. I had a stand up argument with my doctor who initially wouldn't increase my dosage until I threatened to self medicate, at which point he agreed to increase it to 150mg.

I started to feel better and 3 months later had another blood test, the doctor asked me if I felt I needed another increase which I didn't as I felt better. For the next couple of years I was able to function almost normally and most of the symptoms had reduced or disappeared.

Three years ago I changed my lifestyle, stopped drinking alcohol, became a vegetarian and took up exercise. I lost 2 ½ stone and had so much energy, my dose was also reduced to 100mg because my body was healthy and I felt great.

I have so much energy now and have managed to maintain the weight loss. I have my life back now. I still feel angry with my doctor for the misdiagnosis and lack of support and feel that sometimes GP's look for the easiest answer rather than investigate a little bit more. I think that medical personnel need better training in order to diagnose thyroid conditions better.

3/2/2009

 

 

In 1988 I was diagnosed with Hashimoto's disease and was prescribed Eltroxin. From 1998 it was changed to a continually varying combination of generic brands—100mg from one manufacturer 25mg from another. This coincided with a gradual and progressive deterioration in health, starting with episodes of vomiting alternating with diarrhoea. My voice became noticeably hoarse and hypothyroid symptoms began to re-appear.

Vomiting and diarrhoea increased in frequency, concurrent with hair loss and 'scurf cap'.  I was prescribed tar shampoos, which exacerbated the problem. My skin became excessively dry and my weight increased. Exhaustion became an ongoing problem with loss of memory and low concentration levels. My legs and fingers became swollen and I bruised easily. I began to feel cold and had dry eyes and brittle nails. Insomnia became the norm.

In 2001 I was referred to hospital for a barium meal. The consultant prescribed a short course of a proton pump inhibitor (PPI). My GP prescribed the H2-blocker, Zantac (H2 Blockers are medications used to treat a variety of gastrointestinal conditions). On this medication I suffered severe stomach pains, diarrhoea and vomiting. Generic Ranitidine was tried as a replacement but this caused the same symptoms. I was finally prescribed Losec, which I was able to tolerate. Later, Losec was changed to the generic Omeprazole, by the local pharmacist. All the previous symptoms reappeared so I was re-prescribed Losec.

The local community pharmacist insisted all generic brands of medicines were the same as branded ones and that he didn't get paid for dispensing branded medicines.

During this period I consulted the pharmacist about one of the numerous drugs that was being prescribed, as it stated in the Patient Information Leaflet (PIL) that it interfered with thyroxine and to ask for advice from a pharmacist or GP. The pharmacist lost his temper and said he was "sick of them (PILs)" and told me to tear it up and "just take the medicine" which, needless to say, I didn't do!

During 2002 and 2003 my health further deteriorated. I experienced great difficulty rising from chairs and climbing stairs. My stomach became distended and vomiting and diarrhoea became simultaneous. My hypothyroidism seemed to be at a peak. In May 2002 I was confined to bed for 8 days with vomiting and diarrhoea on a daily basis.

In September 2003 another generic brand of thyroxine was introduced. I refused to accept this and insisted that I should be prescribed the brand of thyroxine I had been taking when I first moved to the practice, which was Eltroxin made by Goldshield.

Within 2-3 days the distended stomach and simultaneous vomiting and diarrhoea ceased to be a problem. Despite some improvement over the following 9-12 months, gastric problems remained.

"Many formulation excipients cannot be considered to be inactive - indeed, they may be the primary cause for adverse reactions to the pharmaceutical dosage form. We welcome reports of adverse reactions to changes in dosage form, or to changes from one brand of a product to another."
Committee on Safety of Medicines
May 1997

The Yellow Card scheme was rolled out nationally for community pharmacists in 1999 after a pilot scheme in 1997.
http://www.mhra.gov.uk

"Pharmacists have more training and in-depth knowledge of medicines than any other health care professional and are more likely to recognise an ADR."
The Pharmaceutical Journal November 13, 1999 Vol 263 No 7071 p776

In February 2004 Losec was changed to Nexium. I had serious problems with Nexium.
One night in May 2004 I was quite poorly, vomiting bright yellow bile and passing blood red stools. I subsequently asked for a referral.

  • Between August and December 2004 I had the following procedures:
    Upper endoscopy - I had an extremely sore throat and mouth for many weeks afterwards. On one occasion I awakened at 1.30am feeling unwell and spitting 40-60 mls blood.
  • Barium enema - severe stomach cramps and vomiting afterwards.
  • Colonoscopy - my blood pressure dropped to 60/31 and pulse rate was 99. This resulted in me being placed on a drip and given oxygen until stable. I had to remain in hospital overnight.

 I had a succession of lengthy and stressful differences of opinion with my GP, who flatly rejected suggestions that my problems were related to hypothyroidism and/or adverse drug reactions (ADRS). I further asked my GP if there had been any reports of ADRs within the NHS or GP forums. I was given an emphatic 'NO'

Because of my GP's attitude, I embarked on research to see what information was available on hypothyroidism and ADRs. Contrary to my GP's assertions, ADRs had been universally recognised years ago as a significant, serious and ongoing problem.

I informed my GP that my research had shown that combined thyroxines could be detrimental to hypothyroid/auto-immune patients. His response was "I have never heard such crap".

My health was still unsatisfactory, so I decided to ascertain if my medication could be the problem. In September 2005 I stopped taking Nexium as I thought this may be the cause of some of my problems. It was.

I asked my GP if he could recommend something in place of Nexium.  He prescribed Pepcid, assuring me that I would have no adverse reactions to the formula.

On collecting my prescription, I was dispensed a generic substitute. The pharmacist informed my GP that Pepcid was £10 more than the generic drug. My GP suggested I should be prescribed Pepcid on a private prescription. I found this proposal unbelievable. The fact that my health problems were not of my making, added insult to injury.

"Patients should be maintained on the same brand name levothyroxine product."

Joint Position Statement  of the American Association of Clinical Endocrinologists, TES, and American Thyroid Association on the Use and Interchangeability of Thyroxine Products - June 2004

"The ATA Unveils New Data to FDA On Bioequivalence of Levothyroxine - Physician survey reveals significant adverse events in patients. Bioequivalence of Levothyroxine" American Thyroid Association October 2006

Eventually, I was prescribed Pepcid on a NHS prescription. Before taking Pepcid, I read the PIL and the notes were sufficiently disquieting for me to contact a different pharmacist, who confirmed that if I was reactive to Zantac and Ranitidine (I was/am), I should not embark on a course of Pepcid. I didn't.  After this episode I decided enough was enough and sought advice from my MSP.

 Because of a previous breach of patient confidentiality, I first decided to obtain from the hospital records office, copies of correspondence from my GP to the consultants at the hospital. After reading this I formed the opinion that my GP had misinformed and suppressed the truth in providing information relating to my case.

In a letter to the hospital, I commented on this correspondence in great detail, correcting and presenting what I regarded as the correct facts.

Reluctantly, in October 2006 I applied for copies of all my health records from my GP's practice. I found that the truth had been suppressed, incorrect details had been recorded, including information in referral letters.  There was no record of my suffering ADRs to specific drugs.

With help and support from my MSP, my computer records have now been annotated and include a record of my ADR to drugs and also my detailed statement of correction.  These ensure that my records do, in fact, provide a more accurate reflection of my medical history.

It would be non-productive to detail the insults, the times I have been berated, the distressing confrontations I have been subjected to or to the breach of patient confidentiality.  Safety nets were in place which should have prevented what has happened to me.  It would appear that due to unprofessional practice, arrogance, dogma and bigotry at community care level, these safety nets were ignored, resulting in my being subjected to considerable harm.
The Royal Colleges of Physicians and Surgeons in Edinburgh and Glasgow have called for more transparency and openness. Unfortunately this has not filtered down to my local Community Medical Practice. To date, no one has apologised.

Although some health problems still remain, I now take 2½ grains of Armour Thyroid and am greatly improved. I have now changed doctors and travel 20 miles to the surgery. The change has been worthwhile.

The following references are relevant to my case:

1)"The adverse reactions produced in patients by various excipients in drug products have only been recognized in relatively recent times, from the standpoints of either frequency or severity. It is believed that the first book to be devoted entirely to the subject was printed in 1989." Adverse Reactions to Drug Formulation Agents: A Handbook of Excipients (Clinical Pharmacology, Vol 14) authors: Murray Weiner and Leonard Bernstein; the publisher: Marcel Dekker, Inc., 270 Madison Avenue, New York, NY 10016

2) "People often respond differently to the same medicine. Few medicines are effective for everyone; all may cause adverse reactions and occasionally death."
www.nuffieldbioethics.org

3) "Medicines killing 10,000 people." http://news.bbc.co.uk/1/hi/health/3856289.stm

4)  Communicating with Patients about Harms and Risks by Andrew Herxheimer. Available from PLoS Medicine  http://medicine.plosjournals.org/perlserv/?request=get-document&doi=10.1371/journal.pmed.0020042

5)  Misprescribing and Overprescribing of Drugs - http://www.worstpills.org

6)  Adverse drug reactions as cause of admission to hospital: prospective analysis of 18 820 patients by Munir Pirmohamed et al http://www.bmj.com/cgi/content/abstract/329/7456/15

7)  World Health Organization Geneva 2002: Safety of Medicines - A Guide to Detecting and Reporting Adverse Drug Reactions-- Why health Professionals Need to Take Action http://www.who.int/medicinedocs/en/d/Jh2992e/

8)  Dictum of the Lord President Clyde in Hunter v Hanley, 1955 SC 200
 P. 206 – "To establish liability by a doctor where deviation from normal practice is alleged, three facts require to be established. First of all it must be proved that there is a usual and normal practice; secondly it must be proved the defender has not adopted that practice; and thirdly (and this is of crucial importance) it must be established that the course the doctor adopted is one which no professional man of ordinary skill would have taken if he had been acting with ordinary care."

20/10/2008

For years I had pestered my GP (well that's how I was made to feel), for trivial things such as too frequent periods, IBS, weight gain and lack of energy, to the point where, aged 39, I would just about make it home from work and fall asleep.

After a week of diarrhoea I was referred to a gastroenterologist and had to go through an agonising colonoscopy on 11/9/01 (I remember that day). The consultant asked if he could do a blood test as he was suspicious that my thyroid could be overactive. I thought "Oh no!", as that would mean I would put more weight on if treated.

He had to re-do the test as he didn't believe the result and I was sent back to my GP with request to go on thyroxine, which she reluctantly gave me saying, "Well, you don't look like you've got a thyroid problem." I started on 25mcg and have now been on 100 mcg for the last 4 years.

I feel much better and, having discovered a new life and energy level, decided I would do something I have always wanted to do. I took up horse riding again - something I had loved to save up to do in the school holidays.

Well, things have moved on and now I have my own pony, Fergus, a Highland 13.3hh with the sweetest honest face and big brown eyes. I've had him 3 years and life has been so good (sometimes scary, he loves a gallop!) since.

I do not think I am on the right dose of medication, as sometimes I still get sweeping tiredness and other symptoms, but nothing as bad as before.

My younger sister was having similar problems and I begged her to ask for a test, which she did. Now it seems it's a family thing as Mum is taking thyroxine too.

25/11/2008

I was diagnosed on Monday 24th November, 2008, just a phone call from my GP to say, "Nigel, I've had your blood test results back from the RUH, and I need to see you." The blood test was at the request of a neurologist at RUH in regard to my persistent and increasing migraine attacks. Why at this time, she decided on a thyroid check, is a mystery to me.

I have been having blood test after blood test for 5 years to try and get to the bottom of a diagnosis of Palindromic Rheumatism in 2004. To be honest, at times I felt like the NHS has more of my blood on test than I have left. At the moment I've got three samples taken by various arms and departments of the NHS, all being tested for 'things' at the same pathology lab in the local hospital.

My present GP, since I moved back to Bath, is the most thorough man I have ever met. He does not let anything go and will investigate until he is satisfied that he has the solution to the problem.

Just after being diagnosed with the rheumatic thing, after 'blood tests', the doc informed me that I was B12 deficient and would need injections 3 monthly for life. The hospital (RNHRD) then put me on a medication (Methotrexate) that required monthly blood tests. This went on for two years with regular blood tests and additional ones for liver function, lymph test, and all sorts of other things. I'm sure during this two year period, one of the practice nurses suggested to the doc that we check the thyroid but I cannot remember if they did or didn't - I was too busy running myself into the ground through pressure of work etc etc.

When I became intolerant of the Methotrexate, the hospital changed me to Sulphasalazine, another drug that required regular blood tests. In 2006 after 13 years of running myself ragged, I gave up running pub and restaurants and moved back to Bath to hopefully pursue a better lifestyle.

It was then, of course, that I changed doctors and for about six months just saw various practice doctors and nurses for repeat prescriptions of B12 injections etc. Luckily I did get to see my registered GP who has been on the case ever since.

This slow, subtle problem has been getting worse as time ticks by. You just attribute the symptoms to other things - age, change in lifestyle, change in job etc. but when you get to the point of looking at the whole picture and add all the little symptoms up you do sometimes get a startling conclusion.

So, that's where I am at the moment - shocked and confused and not sure if I want to laugh or cry.

If anyone's interested, I will let you know how I get on. It's day three of the levothyroxine and 'it sure ain't instant'!

29/11/2008

Throughout my 20's I had always been subject to what I thought of as "ups and downs" - for 6 or so months I'd be full of energy, then I'd have 6 months of slowness, depressed feelings and weight gain. I put it down to SAD - I usually felt worse in the winter.

At aged 28, I had an "episode" where I suddenly became hyperactive and felt jittery. I put this down to stress and a move of jobs. This was followed, 5 months later, by a "crash" and a GP diagnosed depression.

This was 9 years ago. I asked for a thyroid test, on my mother's suggestion and they told me it was normal. I refused anti-depressants and got on with it. I got used to being up and down. I got used to weeks of sleeplessness and weeks of torpor.

At aged 35, I had my first child. I obviously didn't know what to expect - no-one does! During pregnancy, I gained 5 stones in weight and felt dreadful. The birth was difficult but my son was fine. I accepted that the first few weeks would be hard but 3 months in I'd only lost a stone and I was still puffy and slow. I was losing hair dreadfully and couldn't string a sentence together. "Post baby" everyone said – my GP and health visitor included.

5 months in, I was struggling for breath, had lost all my body hair, about half my head hair, half my eyebrows, and was slurring when I could manage a sentence at all. "Baby blues" said the GP and offered drugs again.

Finally, 6 months in, I saw a locum, who sent me immediately to the hospital. By this stage, I was seeing things, had disturbed vision and often couldn't remember simple words. I wanted to die.

I had a TSH of over 450 and no T4 at all. I got an apology from the GP but frankly, this wasn't good enough, given my family history – both my mother and grandmother had hypothyroidism. My antibodies were sky high and the hospital told me I had Hashimoto's Disease.

I was referred to an endocrinology clinic and they analysed my history. My initial thyroid test had shown a TSH of JUST within range at 11. I should have been diagnosed then. I wept. This made me so mad. I had lost YEARS of life and could not remember my son's first 6 months because of this disease. I was started on thyroxine but recovery was slow.

I began to feel slightly better almost a year later. This, however, was due less to the medication, which was still not controlling me (my TSH was still 15 a year later), but more to do with the fact that I had miraculously become pregnant again. I cannot recall how...... but there you go!

During pregnancy I felt great and this time only put on a stone. I was monitored throughout and had an easy birth of a daughter. My thyroxine was increased by 75mg, and my TSH bought to below 1. I felt well again, and my hair loss had stopped.

Afterwards, the merry go round of GP's who don't listen started again. "You must reduce your dose" they said. So I did. Immediately, I was tired, slow, scaly skinned and aching, with extreme hair loss once again, plus my milk supply diminished. I rang the hospital myself and demanded an appointment.

The endocrinologist found me with elevated antibodies again, and thankfully, ignored the TSH and put my dose back up. Now I am 6 months in and my TSH is 3, T4 13 - still not ideal but better. However, according to the hospital I am "well" and signed back to my GP who regards the TSH test as gospel.

I want to up my dose further. I have extreme hair loss still, no libido, and my prior to hypo, two degree quick brain is no more. This, according to her, is because I've had kids (so that's 50% of the population written off!) but am not allowed to up my dose.

I am angry: I am infantilised by GP's who often know less than I do about this disease. They look at blood, not people, and don't regard some symptoms (libido loss, hair loss) as "important".

I can say I am 80% better. I can play with my kids and have the energy to go out but the "me" I was has gone. I go to bed early. I am not the sparky, novel writing energetic person I was. I want my libido back. I want my life back. I feel that the 80% better hypos are often asked to settle for is just not right. The medical establishment wouldn't say to a diabetic, "80% is fine, off you go!"

I believe that because I am a woman, I was misdiagnosed by a profession too keen to put everything down to "women's problems" and I've been fobbed off with bad treatment because it's an illness women get and are expected to put up with. I know I am not alone in wishing that my GP would get the disease themselves!

I don't know if I will ever be the same. I find it degrading to have to beg the GP for a raised or maintained dose. I know what I feel, the GP doesn't. This disease desperately needs more coverage and a pressure group is a great idea. If only we weren't all too tired to lobby or argue with our GP's!

I am going to keep a close eye on my daughter to ensure she never gets treated like me!

24/11/2008