Getting fed up being told results are 'normal' where to go now?

Looking for advice as I'm worried my daughter is hypothyroid but Dr advised latest results are normal. As a background both my Mum and I are now on levothyroxine T4 only for hypothyroidism. I was diagnosed Graves/Hyperthyroid and treated on carbimazole then received RAI treatment and since have been on T4 only levothyroxine, albeit never ever seem to be 100% always up/down with symptoms. My daughter has all the symptoms of being hypo. Extremely fatigued, irregular periods, extremely heavy then none for months on end, multiple pains plus the mental/emotional side of being hypo, but the biggest issue being aggressive weight increase in last 18/24 months or so. This is not related to not exercising or poor diet, she’s actually eating less and less all the time! I'm getting nowhere fast and running out of options and patience. Never had adrenals/saliva checked but her latest bloods are

TSH 2.64 Ref Range being 0.4 – 4.5

FT4 12.8Ref Range being 10 - 24

FT3 2.2Ref Range being 4 – 8.3

During last test, I triple checked that it was free T4 & free T3 that was requested as comments I've read state importance of it being free.

Dr says on results that T3 was normal? Not sure if this is TT3 or FT3 now, have another appointment Friday for him to explain. If it is FT3 as I asked surely that’s a problem! I would say looking at tests results that although TSH is within spec (I feel better with really low TSH) but that both FT4 and T3 (again not sure if TT3 or FT3) is low? Looking for some advice I guess on where I go with this, do I ask for appointment at endocrinologists where I was treated at Hospital?, or possible private appointment or even another Dr, which I don’t want to do if I don’t have to?

Any help/advice much appreciated, Robert

7 Replies

  • Total T3 is measured in nmol/L (nanomoles per litre) typical range being 1.1-2.6nmol/L. Your daughter's "T3" will indeed be the FT3, measured in pmol/L (picomoles per litre) typical range 3.0-8.0pmol/L. Your daughter's results are far from "normal" and in my opinion, for what it is worth as not a doctor, she ought to be referred to an endocrinologist very soon. You are so right to be concerned and your GP is blind, how can he say that the FT3 is normal.

    In Colin Dayan's useful "Interpretation of thyroid function tests" Panel 4 and the accompanying text might explain your daughter's results, as her FT3 is way below the bottom of the range, so this might indicate pituitary disease with secondary hypothyroidism, with the possibility of other issues you need to read about.

    Access and print out C. Dayan's paper, which will help you and your GP greatly, by

    typing in any search engine "Interpretation of thyroid function tests by Colin Dayan", then choose the link to the Keck School of Medicine. So far, the Keck School of Medicine site is the only one I know of which allows full and free printing of this excellent paper which will provide all you need to make your GP understand.

  • just like say thanks for the useful information. x

  • nostoneunturned. Thanks for the prompt reply, very much appreciate the information supplied. Using the information above I'll check what measurement was used as I'm sure as you say it would be picomoles per litre and not nanomoles, proving the FT3 is miles out, also thanks for the link to the paper on interpretation of function tests which i've printed out and will take to next Dr's appointment on Fri. Fingers crossed I get somewhere, Thanks again!!

  • Both her T3 and T4 are too low. I wonder (and I am not a doctor) whether her pituitary is functioning properly? With those T3/T4 results her TSH level should be higher than it is, but TSH is produced by the pituitary. (I see nostoneunturned says the same thing)

    If your doc won't help, read Dr P's book "Your thyroid and how to keep it healthy" and look at trying some of the nutri products. As well as the widely taken nutri thyroid and adrenal, they also do a nutri pituitary.

    They are all sold legitimately as health supplements.

    I take Nutri thyroid and nutri adrenal extra (interestingly the NA extra contains pituitary extract)

  • Thanks for the information on nutri products, have another appointment friday, hopefully armed with the information I have, he will see that the results are far from normal and have a course of action to make her feel better. Thanks

  • If the appointment on Friday doesn't give the result you want, and hopefully it will, consider making an appointment to see or talk to Dr P. That's who I saw.

  • Where is Dr P? Or how do I contact him? Is he within NHS? Sorry for all the questions :)

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