Interesting article

I am just compiling a letter to send to my GP regarding my treatment on Levo, which I am not happy about as I feel dreadful even on 125mcg. I have just spent all day asleep as I cannot function today at all... I am angling for a full blood test not just the TSH test ( I can't afford private) , and hopefully T3.

Anyway, whilst looking for some quotes to put in my letter about my treatment, I came across this which you may have read, but is still useful. I will let you all know how I get on in my quest!

thyroid.about.com/od/hypoth...

7 Replies

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  • I did the sane yesterday at the endo.they won't give it! They say they go by the thyroid association so won't give dnt and even hesitant (still haven't got it)to give t3 meds. I self reduced from 150mcg to 100 and my blood tests came normal. Listen to your body not doctor. .try reducing your dose A little? My next step is to source t3 online. ..then if not better dnt..which is harder than the t3 without the doctors help. They really don't know what they're doing don't be a bystander I was for 6yrs. It may sound like a cliché but take it from some 1 who doesn't like to move easy yoga flexibly routines and cutting gluten and soya improve the pain and groggyNess 30 percent

  • Was thinking of maybe reducung the dose, but not sure if I need more or less- my TSH is suppressed at the moment at 0.06.....too low perhaps?

  • That does sound low. Uk guidelines are 0.34 to 4.94. However do read up as there is debate as to this range! Currently I fall at 2.73 and no need for follow up action. But this isn't right or else I would feel better. I would look into why your tsh level is so low with the levo it can possibly indicate problems with t4 to t3 conversion. And encase they haven't done it as standard request your free t3 levels and total t3 levels (I found out yesterday that my gp hasn't tested my t3 since 2011!).this is crucial to paint a proper picture as is the t3 that is the active hormone. Good luck let me know how you get on

  • Gilly, the TSH is irrelevant - and certainly low TSH has nothing to do with conversion problems. It doesn't tell you anything unless it's high.

    Your TSH is definately too high for someone on thyroid hormone replacement. It should be one or Under - even suppressed, that's not a problem if you feel well like that.

    Also, the total T3 is a redundant test. It doesn't give you any useful information because it lumps togethe free t3, rT3 and bound T3. What you want to know is how much free T3 you have available for use by the body.

  • Cal1971, It's hard to see how your GP can gauge your thyroid status by TSH testing alone without testing FT4 and FT3 to check how well you are converting T4 to T3.

    Dr Toft, one time president of the BTA states in Pulse Magazine, "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.

    This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

    thyroiduk.org.uk/tuk/about_... You can request a full copy of the Pulse article from Louise.Warvill@thyroiduk.org.uk

    The European Thyroid Association state "Suggested explanations for persisting symptoms include: awareness of a chronic disease, presence of associated autoimmune diseases, thyroid autoimmunity per se, and inadequacy of L-T4 treatment to restore physiological thyroxine (T4) and triiodothyronine (T3) concentrations in serum and tissues.

    karger.com/Article/FullText...

    They go on to say that a trial of T4+T3 combination may be beneficial in some cases and that it should be administered by endocrinologists.

  • Great, I will use that in my letter as well!

    Once it has been sent, I will post a link so that others can use it as a template ( with gaps for their own symptoms etc) and will see what happens- I just woke up this morning raging and decided I have to do something, I can't go on like this, I feel 90 not 44!!!

  • If anybody would like a copy of the template, please send me a message with you email address! It has been completed!

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