Can anyone help or advice me on the medication problems that I am having.

[lin71]

Having been diagnosed with under active thyroid about 14 months ago I am still having trouble with the medication. I started on 25mg of levothyroxine for about 6 to 8 weeks. My dose then increased to 50mg. Thats when the trouble started. I just wanted to sleep all the time. I missed a couple of doses and felt fine again. Over the last year I have tried different manufacturer makes of Levothyroxine with the same reaction. Often at times missing weeks of medication. My doctor finally referred me to an Endo specialist to prescribe me with the liquid form of levothyroxine. I had been off medication for 3 months when I saw the consultant. I felt terrible. The consultant prescribed me the liquid form. I thought it might be the coating on the tablets making me ill as I have had the same reaction on other medication and vitamins. The consultant said she had never heard of it before. After 2 doses of the medication I had the same reaction but only for a day. 7 weeks later of being fine on the medication I have experienced the same reaction again. after missing a dose I felt much better and after missing 2 doses I feel fine again. I don't know if my body can only take so much of the levothyroxine and makes me react the way I do or if I am having a reaction to something in the medication that after a while of taking it it builds up so making me have the reaction. I can't not take medication as I feel terrible without it. but I am ill on it.

Has anyone else experienced the same reaction or has any advice on what it could be.

My last blood test 3 weeks ago was 4.74 which is on the higher end of the acceptabe range.

[Jackie]

Hi, It sounds to me that you may need T3 on a script. Make sure that you have had a Free T3 test, the consultant should have done one. I have to have mine just under the top of range. It is certainly linked to weight and high TSH. Also your Vit D ( a hormone )may be low

endo should certainly have tested but, make sure. If D low it has to be increased gradually depending on calcium results.It takes a long time.Also I was like that with my diabetes as it was very bad, that should also have been tested but make sure best blood test HbA1c and separately glucose too.

Best wishes,

Jackie

[shaws Administrator]

I assume it is your TSH which is 4.75 (when you give your blood results it is always better to include the ranges as labs differ which makes a comment better). It is not in the acceptable range at all. It is far too high yet and this is what Dr Toft said in his article in Pulse:-

The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range – 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

*****

The main fact is that you find taking medication is not agreeing with you at all. On the liquid thyroxine are you taking an equivalent of tablet levo of 50mcg? If so it is too a low dose which may be affecting you and this is an extract from Dr Lowe's site (synthroid is the USA levo):-

Without question, you should do something else. Unfortunately, your doctor prescribed for you what our clinical and research experience has taught us is the least effective approach to thyroid hormone therapy—the use of T4 alone. Synthroid, of course, contains only T4.

Moreover, the dose he prescribed, 0.05 mg,(50mcg) is extremely small. It’s so extremely small that it's highly unlikely you'll benefit from it in any way no matter how long you take it. On the other hand, that small a dose may actually slow your metabolism more and worsen your symptoms. Perhaps this has happened, in that you say your symptoms have worsened since you started taking Synthroid.

It’s tragic that millions of patients such as yourself suffer needlessly for years because their doctors prescribe extremely small doses of T4

[lin71]

Thank you Jackie and Shaws for your answer. I am starting a new job next week with more money so I will soon be able to pay privately to see a specialist. Until then I have to rely on the nhs. The endo specialist asked me if I wanted to see her again. I am due my next appointment end of Jan. Although as of yet no date has been given. She has only given me a blood test form for blood count, glucose and tsh. As far as I'm aware I have not had blood tests for the ones that you recommend.

[Jackie in reply to lin71]

Hi I would certainly try another one. Consultants ,like every one are mixed. I originally saw a good private doctor and was not given any tests except basic thyroid, on request. When , after a couple of years I saw an endo she tested everything and all were out! If you see another one you need to do all the research. if NHS look up a top hospital , then do CV`s on their names, then ask people. Do not rely on the GP!!! Another option is to pay for blood tests ( most ) through TUK site, I have the intermediate test and sometimes others. You get a £10 discount with Blue Horizon, TUK10. You do not need authorisation , results to you.As ,they are the same Lab as the ones at all the private hospitals ( lab called TDL ) they are well known to any doc you show them to, which is important. I pay about £60 for intermediate test, T,4 Free T3 and tsh, the same test about £200 at private hospitals.

I hope you get sorted, it does take a long time.

Jackie

[lin71 in reply to Jackie]

Thank you