some advice please?

Hello all. I am a 23yr old woman who was diagnosed with 'subclinical hypothryoidism' by a private doctor while I was living in Tokyo last year (September.) I was diagnosed on the following blood results: TSH 4.88 μIU/mL (ref:0.50-5.00) FT3 2.70 pg/mL (ref:2.30-4.30) FT4 1.01 ng/dL (ref:0.90-1.70). I was put on NDT 40mg that was then put up to 60mg then 90mg and I feel much better now - I can concentrate, am much happier, have enough energy to get through the day, lost the puffiness in my face, lost a bit of excess weight etc. My TSH has dropped to 1.73 but my T4 has only risen slightly (T3 is higher, just above half the reference range, but I don't have the exact numbers on me now.) However, my GP, and an endocrinologist I saw yesterday think there is probably nothing wrong with my thyroid and want me to not take anything for 4 weeks after which we will repeat the blood tests. I feel really uneasy about this because I don't want to become sluggish and sad and start gaining weight again.

Does anyone have any advice as to whether my blood tests seem normal or not (bearing in mind I did have symptoms?)

I have high testosterone and low progesterone (and possible pcos) as well and I started on the pill (yasmin) at roughly the same time as the thyroid medicine. The endocrinologist thinks that the improvement in symptoms could be down to this instead, hence the elimination of the thyroid medicine and then another test.

Anyone have an experience or knowledge relating to this? Thanks so much in advance.

5 Replies

  • Your Free T4 and Free T3 were both low in range, and your TSH was right at the top of the range. You had typical symptoms of hypothyroidism which have improved with treatment. And the doctors you've now seen have started trying to convince you that other treatments you've had are responsible for your improvement.

    Based on the above, I'd guess you are now back in the UK because such lack of care for your thyroid health is typical of many doctors here. On thyroid forums on the internet anyone from the UK trying to get treated for a thyroid problem is generally pitied and sympathised with, because treatment here is so sadistic. Symptoms are ignored, and only blood tests count. And there are many doctors who won't treat hypothyroidism until the TSH is 10 or more, and Free T4 is under the range. Believe me, you will feel much, much worse if you wait for UK doctors to treat you. And it might take decades for your thyroid results to get that bad. (Although it might be much quicker.)

    You could refuse to give up your NDT. I think there is a good chance that your GP and/or endo may refuse to prescribe it for you because NDT is not licensed for use here. It can be prescribed by doctors but they have to do it on a "named patient basis" which means that the doctor personally takes responsibility for your treatment, and many of them refuse to do this. If you want to continue with NDT, it is possible to buy it on the internet without a prescription. It is also legal to import it into the UK for your own use. You may have to pay customs/admin charges and VAT when you do import it.

    If you are not in the UK then what I've said above doesn't apply - every country has their own rules and preferred treatment(s).

  • If I had been feeling well on NDT and relief of symptoms (your tests point to hypothyroidism) they wouldn't get me to stop my medication but, of course, it's up to you. They have no idea what we suffer when we are either undermedicated/undiagnosed/undertreated.

    Others will respond too I should think, but the above is my own personal opinion and am not medically qualified.

    Probably because you look/talk/feel well (and appear normal) they imagine that you don't have hypo when the probable reason is facing them, i.e. doing well on NDT. Maybe because too often they don't see patients who are 'well' on thyroid hormone replacements.

  • I think you have a simple choice here. Do what the NHS want you to do and go backwards fast, or contact thyroid UK and ask for their list of private thyroid friendly doctors. Get an appointment with one of them and pay for the consultation and NDT. I suppose there is a third option which is to go it alone, but where you're so young, I'm not sure that's such a good idea.

  • thank you everyone for responding - I really appreciate it! It really did not feel right that they would tell me to stop medication for a month if there is a chance I will feel much worse... that seems rather ridiculous.

    The initial appointment with the GP was also horrendous as even though I was explaining myself articulately she just could not take me seriously once I mentioned I was on the NDT, and I turned into a joke for her, which she clearly displayed in the way she spoke to me!

  • I know you might not have been with the current GP for very long, but do you think it is worth trying to find a different one? The one you have at the moment sounds like a fool. I couldn't bring myself to trust her if she treated me like she treated you.

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