Advice please - diagnosed in January and moving doctor soon

I have been feeling particularly unwell for several years - aching, cramps in toes, anxiety, palpitations, exhaustion and awful itching of skin/hives. The aching started in my legs about 26/27 years or so ago when I was in my early 30's soon after the birth of my son, but at that time it was not excessive and came and went (and my doctor did not make any comment about it!). Over time things deteriorated and now I suffer constant aching of legs (which is particularly bad on waking) and arms and shoulders with stiffness/achings of hands, toes and cramps. I can sleep for England and can get up after a full night's sleep (or rather struggle to get up after my husband has struggled to wake me!!) see my daughter and husband off and fall asleep in the chair for 2, 3 or 4 hours at a time. Walking has become a nightmare. I try to walk but have to have frequent rests and so exercise is restricted to housework really (which is an effort in itself).

After various visits to doctors in the practice over the last few years I have been given Prozac, sent to a counsellor, given an endoscopy because of a very loose bowel, sent to the rheumatology department at hospital because the doctor suspected polymyalgia (they eventually told me there was nothing wrong and I should lose weight) and attended physio sessions at the hospital. I was diagnosed with sleep apnoea a year ago but, although on treatment, this has made no difference to the exhaustion. Eventually to my surprise I was diagnosed with hypothyroidism at an annual blood pressure check-up in January (I have had high blood pressure since the birth of my daughter in 1992 which is when I was also diagnosed with asthma although that rarely causes me any problem.)

My TSH was then 29.58 and T4 was 9. I was put on 50 mcg thyroxine and at my next contact with my doctor he accused me of not taking the medication even though my TSH had gone down to 6.15 and my T4 was 14! I moved to another doctor in the practice who told me the aim would be for me to have a T4 of at least 19 and to pay no attention to the TSH figure. On 100 mcg my T4 measured 16 and TSH 1.41 and I informed the doctor I still had all the symptoms. He increased the dose to 125 mcg 4 weeks ago, which is where I am at at the moment- still aching, tired, etc. etc. To cap it all this doctor implied that it could be in my mind and whatever symptoms were left after I was on the right level of medication (whatever that is!) they would have to be treated separately. I have now decided to move to another doctor's practice which I have been told is good and will approach the whole medication issue. Before I do this can you tell me if you think the figure of 19 for T4 suggested to me by my present doctor is correct and, apart from my history, is there anything else I should discuss with the new doctor (I know about the unwillingness of giving T3 and the dessicated thyroid issue but have read that the antibodies test is the best. I also notice that my 25mcg pill is made by Wockhardt and the 100 mcg one is Actavis).

Any help you can give would be gratefully received.

Heather

2 Replies

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  • Oh dear, classic response by a GP who feels out of their depth and thinking 'surely that drug should be helping this person - they are obviously not compliant or are just imagining things now'!!

    How can your GP say you were on the right level of medication - you are clearly not if you still have symptoms.

    Maybe you still continue to have symptoms because you are still not being given optimum treatment and maybe you do need T3 either to supplement your T4 or through a natural dessicated thyroid med which should give both elements.??

    Some people need to be below 1 TSH to feel OK.

    As for antibodies tests - I had my Anti TPO done through my GP so yours may well do it. If you are having probs getting the tests you need and you can afford about £50 - you can have the full range done through Geneva labs - look in the files section - this is discounted thanks to ThyroidUK. Or the single T3 test is £17 through Lab21 in Cambridge.

    As for different brands, I understand that they can indeed be differences across them and it is better to stick to one where possible - there is a blog about this - have a look.

    You have a lot of things going on. First off all see a new GP and ask about increase dose - 125mcg is not very high. You do need to allow about 6 wks between increasing doses remember. Also ask for an antibody test.

    Then decide about private tests - like T3. Then post results here so people can help.

    Hope this helps for a starter.

    S

  • Dr Toft feels that some patients need to be down to the bottom of the TSH range or slightly below and up to the top of the FT4 range or slightly above before they feel better. Also, some people feel better on additional T3 or on natural thyroid hormone. It's all a question of trial and error, I'm afraid!

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