I want to understand what happened to me. - Thyroid UK

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I want to understand what happened to me.

Nayeef profile image
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I stopped taking levothyroxine for a month because I wasn’t feeling any improvement at all. Then, I went back on it with a high dose of 100 mcg and felt a quick improvement. I had a lot of energy, and the brain fog disappeared. But, this improvement only lasted for 24 hours. I then increased the dose to 150 mcg, and the improvement returned, but again, it only lasted for 24 hours before stopping, even with a higher dose.

I’ve tried everything, from very low doses of T3 to high doses, with no results. Here are my latest test results while on 125 mcg. All my blood tests for vitamins and minerals are normal.

TSH 0.06

Free T4 16.66

Free T3 3.69

TPO 11.66

Do you have any suggestions? I’m currently taking both levothyroxine and liothyronine. Sorry for any typos; I have a lot of brain fog, and my language skills aren’t great.

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Nayeef
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helvella profile image
helvellaAdministrator

Didn't notice any typos! But do you have the reference intervals (ranges)? They vary too much to be able to make assumptions.

Jaydee1507 profile image
Jaydee1507Administrator

Do you do tests as per the protocol recommended here? Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw, last T3 dose 8-12 hours before blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process).

Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.

What was the timing of last doses of Levo & T3 before this test?

We need to optimise vitamin levels for our thyroid hormone to work well.

What supplements are you taking?

What are your results for ferritin, folate. B12 & D3?

Your FT3 looks low but it depends when you took last dose of T3 before the test. leaving too long can show a false low.

Nayeef profile image
Nayeef in reply toJaydee1507

Yes, I am aware of the proper procedures before conducting tests. I hadn’t taken T3 for a long time because it wasn’t available in my country, and I used to order it from abroad. Now, it is available here and can be obtained without a prescription. When I conducted the test in the morning, I did not take Levothyroxine, and I was fasting without taking any supplements. The tests for ferritin, iron, folate, and vitamin D were all normal.

I suspect an adrenal issue because no matter how hard I try, I don’t feel better. I have previously conducted several adrenal tests via saliva in the past, but nothing conclusive showed up. However, the symptoms are present and indicate a problem. I didn’t understand the significant improvement that occurred after stopping Levothyroxine for a long period. I am confused and don’t know what to do.

Hectorsmum2 profile image
Hectorsmum2

I cant imgine you would feel well if you went with out thyroid hormones for a month then took a big dose followed by another bigger dose. You have to make tiny changes over a long period of time to find the right dose.

as much as this will be frustrating for you, I think what happens is you get an initial surge, and then it goes away. But it does return once you *very slowly* increase dose (if necessary). So if you can hang on for 8 weeks on 100 then see how you feel you may balance out? It actually took me about a year (sorry) for my body to recover AND to respond properly to thyroxine. There’s quite a bit of recovery to go through for your body to start working as well as it did (ish) and I think this is part of the journey. Sorry 😔 and good luck x

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