Still not feeling much better...: Hi I was... - Thyroid UK

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Still not feeling much better...

MyAngels profile image
2 Replies

Hi

I was diagnosed with hypothyroidism in March 17 with results of TSH of 24 and Serum Free T4 of 11.1 (the normal range I was given is 12-22). In May (after 6 weeks of 50mcg of levo) my repeat bloods were TSH 11.6, T4 14. Levo was increased to 75mcg and in July my TSH was 3.16 (T4 not measured) and the doctor concluded all was normal (as it was between 0.4 and 4.2) again, so didn't raise the dose.

However I still don't feel right - I'm getting so fed up with feeling rubbish, but with a TSH of 3.16 I've been getting nowhere actually getting another blood test before next July, as the doctors (both GP and rheumatologist (I have Hashimoto's and Sjogren's) keep saying the level is "normal".

I see sometimes that people recommend the TSH level should be less than 2.5 or even around 1 - are there any papers/recognised thinking of this recommendation (I've heard of the Pulse article?) that I can wave at a GP when I make yet another appointment this week to beg for a test?

Many thanks for any advice.

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MyAngels
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waveylines profile image
waveylines

Hi MyAngel. This is a classic case of being treated by the TSH and its range and not by the thyroid hormones. For a start a TSH of 3 is too high. It should be under one. I would print of the guidance for treatment that NICE guidelines has and show it to your doctor! You are being under treated and need further increases. 75mcg is a low dose. It has been proven that treating by the TSH range leads to under treatment. I also think your GP has been premature in putting you on an annual review of meds whne you are not yet proven stable. That normally occurs after the optimum meds have been reached and you are feeling well and blood tests have shown to be repeatedly stable. I dont think your GP knows what they are doing to be homest.

Ask your doctor to run a full thyroid panel -FT4, FT3 & TSH. The GP needs to get your TSH well under one and your thyroid hormones in the top third or even at the top of their ranges.

Always ask for a copy of your blood test results. You are entitled. It is useful to keep a file with them in. Write the dose of medication you were on each test results. Can help to show trends.

If your GP will only treat by the TSH range I would try a different GP in your practise.

diogenes profile image
diogenesRemembering

There's a simple recitation you can give a doctor not conversant with thyroid problems.

1) In the whole population, the active hormone free T3 controlling our health can vary from person to person by a factor of 2. Every individual has their own unique level of FT3 at which they operate best.

2) When we are healthy, the thyroid gland produces about 1/5 of the total T3 in the body, and body tissue conversion of the T4 the gland also produces, accounts for about 4/5.

3) When we lose part or all of the thyroid gland, that source of T3 is lost or severely reduced.

4) Therefore if T4 only is offered, the body tissues must work harder to regain the level of FT3 that was necessary for health.

5) This means that more T4 always has to be given to force the tissues to make adequate conversion to compensate for thyroid T3 loss..

6) This means that compared to health, the extra T4 needed to make up the missing T3 suppresses the pituitary, reducing the TSH level.

7) Therefore the TSH range used for healthy people does not and cannot apply to therapy. - it must be lower and can be as low as 0.03.

8) Additionally in some cases, TSH is suppressed to undetectable because such individuals are such inferior T4-T3 tissue converters that they need so much T4 as to suppress TSH entirely. Thus suppressed TSH is not necessarily an indication of overdosing.

9) In cases of high demand and poor conversion T4/T3 combination therapy may be required to produce an adequate FT3 level.

This could be used as a step by step logical discourse with a GP or endo - provided of course they have ears and a channel from them to the brain.

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