Endo visit

Well just back from visiting endo and to be honest I'm quite disappointed.

I was on 200mg of levothyroxine, had terrible symptoms and came off medication.

Had a chat with doc and put back on to levo 50mg and to see about starting on t3 after chat with specialist.

I was told that t3 medication does not work and that she'd get more tests done to check my vitamin d/b12, check for celiac, calcium deficient, and my doc to test for cortisol!

So basically it's been a waisted exercise? I have to just stick with t4 only medication.

Anyone else had this?

9 Replies

  • May not be completely wasted. At least your getting those other tests done. See if you can also get ferritin and folate done too. You need Vit D, B12, ferritin and folate all to be optimal for thyroid hormone to work (nor normal or fine or OK but optimal - get your results, put them in another post and members will tell you if they're optimal).

    Funny how the doctor said T3 doesn't work. I wonder how he'd argue that point with other doctors who've prescribed T3 to their patients and they've done very well on it.

    Cortisol test can be useful, but the private one by Genova, the 24 hour saliva adrenal test, is probably better as it takes four separate samples throughout the day. If your adrenals are struggling, so too will your thyroid.

    I'd be getting some private tests done, thyroid and adrenals, post the results on here and get some guidance from members. Doctors like to keep us ill!

  • Last test I got done no mention of t3 but t4 was <5 and thyroid was <150. Off the scale, my doc thought that t3 was going to be the best option but wanted me to see endo as she didn't know how to dose.

    I'm seeing her again next month, hopefully might be some better news

  • I don't understand your results.

    Can you give reference ranges for those tests? Not sure what 'thyroid' is or what <150 refers to.

    If your T4 was <5 you have a big problem. Do you mean TSH?

    T3 is rarely done unless something drastically wrong with the others. That's why a lot of us get private tests done through Blue Horizon.

    They should look something like this (just made the numbers up but ranges are pretty near):

    TSH - 2.5 (0.2-5.5)

    FT4 - 19 (12-22)

  • This was only what I could see off screen, when I go back to see doc I'm going to get print out of results, but yeah tsh was off the scale

  • Isn't that because you used to be on 200 micrograms (not milligrams..... mcg as opposed to mg) of levothyroxine and then you stopped cold turkey?

    Obviously you need to be taking thyroid replacement because your thyroid is barely producing any hormone. For why you stopped taking anything at all is a mystery because for sure you must have gotten very ill as a result.

    When the thyroid hormone level is so low, the ability of the gastrointestinal tract to absorb nutrition is compromised severely. SeasideSusie is right: you need comprehensive testing for vitamin and mineral levels. But you also need to bear in mind that tests for ferritin are sentinel tests. They also imply that other minerals like zinc, copper, selenium, magnesium, manganese, etc. may be low as well. The body starts to degenerate when thyroid levels are so low and it takes quite a bit of time to build back up again.

  • I think it's likely your TSH was 150 and your FT4 was less than 5. Which is not good - your thyroid (if you have one) isn't producing any thyroxine (T4). I can see why your doctor wanted you to go back on levo.

    But he's wrong about T3 - it does work, and some find they can't take anything else. You might be one of them.

  • Yeah I got told it doesn't work. And I shouldn't read what's on the internet about t3.

  • He probably ought to. :) He might learn something!

  • My endocrinologist also told me that T3 doesn't work when I asked her if she ever prescribed it. I couldn't be bothered to argue with her, I can't deal with the stress. I told my GP (who has said that he isn't allowed to prescribe T3 because of budget constraints) - he told me, very tongue-in-cheek, that T3 only works for private patients.

    I have now sourced my own T3, which my GP knows about. When I next see my endo, it will be interesting to see what she thinks. I expect that she will tell me that it is just a placebo. It's the best darned placebo I have ever had, so I will be continuing to take it :)

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