Where do I go from here?

Haven't posted for a while as I thought I was on the right track but after my last blood results I have been told to reduce my Levo as my TSH is now below 1. (Have Hashimotos).

I took the trouble of travelling to an endocrinologist from the thyroid uk list in London (I'm based on South coast) but I only saw him once in 4 visits and each time I saw someone different each having a slightly different view of treatment! I asked to be discharged as there was no point in travelling anymore.

Results from Feb 2017 (on 100mcg Levothyroxine, 10mcg Liothyronine) - TSH 2.16(0.35-4.5), ft3 4.2(3.5-6.5) & ft4 11.7(10-18.7) and Endo agreed to slight increase in Levo but a categoric no to increasing Lio as t3 is dangerous.

Results from May 2017 (on 125mcg Levothyroxine, 10mcg Liothyronine) - TSH 0.25(0.35-4.5), ft3 3.8(3.5-6.5) & ft4 14(10-18.7) and Endo wrote to my GP to decrease Levo to 100mcg if TSH came back under 1. So where do I go from here, any ideas?

TIA.

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11 Replies

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  • CABDutch Personally I would self source T3 and add some extra.

    You can see by your latest results that your FT3 is far too low for someone taking T3.

    Generally, most of us Hypos tend to feel best when TSH is 1 or below, which is what Dr Toft, leading endocrinologist and past president of The British Thyroid Association mentions.

    Are you addressing the Hashi's by being strictly gluten free and supplementing with selenium L-selenomethionine 200mcg daily to help reduce the antibodies?

  • Thank you, I haven't been successful with the gluten free but I do take selenium, the second endocrinologist I saw was the one that added the T3 and also suggested Selenium. I was rather hoping that she would continue my care but I never saw her again and the two after had different views regarding the T3.

  • Gluten free works for many Hashi's patients but not all. Did you give it a good go, I've read that it can take months to make a difference.

  • I haven't been able to give the gluten free a good go yet I'm afraid, my budget is very tight and everything gluten free seems to be very expensive.

  • Can I just say, it's possible to go gluten free without ever buying one gluten free substitute? I taught myself to make gluten-free sourdough bread (which isn't sour at all), and have simply ditched other products that can't verify they are gluten free. Not only that, many of the off the shelf subs like gluten free bread contain a lot of other undesirable products that aren't that good for you. It's not easy but it is possible, just take it in easy stages. :)

  • You don't need to buy gluten free foods, I've heard that they're full of stuff that's not particularly good for you anyway.

    You could ask on the forum for ideas from other members who are gluten free, but I think it's mainly cooking from scratch so you know what you're eating.

  • Are you able to pm me where I can get extra t3 or am I better to ask that as a new question on the forum?

  • CABDutch,

    Just as well as you ditched the endo because reducing dose because TSH is <1.0 with such low FT3 was never going to get you feeling well. TSH 0.25 is mildly below range and is nowhere near suppressed. Resist any attempt by your GP to reduce dose. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.roberts@thyroiduk.org.uk if you would like a copy of the Pulse article to show your GP.

  • Should that endo be on the list if prepared to prescribe but using. so little to be useless and to let patients know that liothyronine is dangerous? Please self treat now as even the ones you have made a huge effort to see seem to have the wrong idea.

  • Thank you, I don't fancy my chances with the GP to not reduce my T4 dose! I had a very humiliating appointment a while back where the GP scoffed at everything from ThyroidUK and this forum and I was patronised to the point that I felt like a child.

  • You cold tell your gp that Thyroid UK is recommended by nhs choices.

    Jo xx

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