Mum's TSH result, help please

My mum is 66 years she has been on Levothyroxine for 35 years. Until now she has always done exactly what the doctor has advised. I have learnt a lot myself recently on here with my own problems so have started questioning her treatment.

She has a very sensible diet. She walks probably 10 miles a day. Her doctor tried to reduce her dose from 150 to 125 because of her age.

I told her to ask for a blood test, although they only did TSH and it was marked normal.

Anyway I picked up a print out today and her result is:

TSH 2.29 (0.3-5.5)

Now I'm only just learning myself but doctor S told me a 'healthy' TSH Is around 0.8 and should be less than 1.

She has found it extremely hard to lose weight, she has to eat like a sparrow just to maintain her weight. she suffers crippling migraines and fights against tiredness to stay fit.

In my mind she has been undertreated for a long time. Any advice would be appreciated.

10 Replies

oldestnewest
  • It sounds like she needs an increase rather than a decrease. Dr Toft's book "understanding Thyroid Disorders", although not particular helpful in many parts (I've just re-read it), has some interesting and helpful information on levothyroxine dosing. Dr Toft states that TSH should be below 1 and often suppressed for most patients to feel well, and that T4 should be at the top of the range. Dr Toft is a former chairman of the British Thyroid Association and the book is published in association with the BMA, which is why GPs are more likely to listen to the recommendations in it about T4 dose than some other, and often more useful, books. This might be an option if your Mum's GP refuses to listen. You might just be able to quote the book without actually showing it :)

    You could also point out that, although her TSH is "normal" it might not be normal for her. You could also point out that an increase would lower her TSH but it would likely still be in the normal range. Why is one value of TSH more normal than another? If it is in the normal range after an increase, the GP shouldn't have a problem with it.

    Her GP might try and scare her by mentioning osteoporosis risk associated with increasing the dose. This is a myth and she is actually more likely to develop osteoporosis from being under-dosed with T4. If you can do a search for papers on this subject she could take them with her in case her GP pulls that one out of the bag.

    It would probably be wise to get her serum iron, ferritin, B12, folate and vitamin D tested just in case deficiencies in any of those are contributing to her symptoms. Again, please post the results here because the "normal" results are not necessarily optimal.

    I hope she gets the increase in dose that she clearly needs.

    Carolyn x

  • Hi Mitchell, interesting what Dr S told you about a healthy TSH. But was that for someone on thyroid hormone replacement, or someone with no thyroid problems?

    Sorry to hear about your poor mum. I agree with Carolyn, it does sound like she needs and increase. And I agree with you, she probably has been undertreated for a long time. And that bit about reducing it because of her age, that's a load of codswallop as well! I'm 68 and anyone that tried to reduce my dose would get his head blown off with a shotgun! lol

    Hugs, Grey

  • Hi Grey, like your style ;)

    Yes doc S said a healthy person with no thyroid problems is 0.8

  • Thank you, that's interesting. I thought it was 1.25, but 0.8 is much much better! lol

  • My last TSH was 1.25 and I still feel awful. No increase for me as bloods are fine. The symptoms are all pretty much as they were.

  • Yes, quite possibly, but we're talking about people with no thyroid problems. Once you are on thyroid hormone replacement, everything changes and the TSH becomes meaningless. It shouldn't be used to fix a patient's dose. A combination of FT4 and FT3 plus symptoms SHOULD be used, in an ideal world. Unfortunately, this world is far from ideal. Especially where thyroid treatment is concerned.

    Hugs, Grey

  • Dr Toft also says that if you are still not feeling well you can have a suppressed TSH and/or the addition of T3. I dislike the rest of his sentence but Lyn Mynott did reply to him regarding that phrase.

    I am referring to Dr Toft's article in Pulse online, a copy of which can be had from louise.warvill@thyroiduk.org.

    In this link the first letter is re weight gain.

    web.archive.org/web/2010103...

  • I have had the best health with a TSH of around 0.5. When my TSH goes above 2 I feel hypothyroid. I have also felt better the last 10 year on T4 plus 10ug T3 compared to on T4 alone.

  • my last tsh was 2.84 my gp still wont treat ne :( x

  • what are your T3 and T4 levels? T4 should be 14 and fT3 4.5 based on this paper

    ncbi.nlm.nih.gov/pubmed/218...

You may also like...