Need help, please! TSH 0.01 to 8.25 to 1.12 to 16.9 to 0.07 All from 25mcg changes - down to Hashis or something else? T4 in range.

Hello!

Sorry - had to delete and repost...

I posted here in Feb 22 about a big TSH change I experienced - at my annual thyroid level check, my TSH result rose from 0.01 to 8.25 whilst I was on my usual dose of 100mcg Levothyroxine. My GP raised Levo to 125 mcg and for months it seemed okay, TSH went to 1.12 with T4 in range (just) at 11.5. This was also when I had some thyroid antibodies results

Anti-Thyroglobulin Antibodies 17 U/ml 0 - 115

Anti-TPO Antibodies 190 U/ml 0 - 34

11 Feb 2022

So I learnt my underactive thyroid, diagnosed in 2003, is caused by autoimmune thyroiditis Hashimoto's.

I had my next annual thyroid level check in Feb 23 - my TSH had increased from 1.12 to 16.9 :-). My Levo was increased to 150mcg from 125mcg on 23rd Feb 23 - and now my TSH is 0.07. Such fun.

Throughout these fun changes, although my T4 levels (T3 only tested the last 2 times) have moved around, they've never actually been out of range. But naturally, the GP is only interested in the TSH.

In all honesty, I've not noticed much difference whatever the TSH or T4 T3 level - I feel pretty rubbish most of the time, I have a plethora of anaemia so they may be the cause more than the thyroid. For a time, I thought the 150 mcg was making me jittery - but my T4/3 haven't borne that out & the jitters passed, so that might be a correlation vs causation thing. I keep my folate supplemented as I have macrocytic anaemia, but my iron & ferritin need checking - I have iron deficiency anaemia, too, but struggle with iron supplements and am considering iron infusion dependent on the next iron/ferritin results. I have B12 injections every 8 weeks due to pernicious anaemia so that, at least, is handled. I do not eat dairy, & am waiting on the result of a celiac test (I thought this had been done years ago but turns out, it had not).

Is the Hashi's causing all this TSH kerfuffle? Should I be concerned or asking to see an endo (I'd look to go privately if so)? Should I just not worry?

Oh, and I take 100mcg Vit D - tested in May was Serum 25-HO vit D3 level 87 nmol/L Range 50 - 150

Thanks to anyone who has read this

Cate

These are my TSH/T4 for 2019- 2023

14 Feb 2019 I was on 100mcg

TSH 0.57 mIU/L (0.27 - 4.2)

free T4 18.1 pmol/L (12 - 22)

19 Feb 2020 I was on 100mcg

TSH 0.05 mIU/L (0.27 - 4.2)

free T4 18.7 pmol/L (12 - 22)

19 Jul 2021 I was on 100mcg

TSH 0.06 miu/L (0.27 - 4.2)

free T4 19.3 pmol/L (12- 22)

22 Sep 2021 I was on 100mcg

TSH 0.90 miu/L (0.27 - 4.2)

free T4 16.6 pmol/L (12-22)

28 Feb 2022 I was on 100mcg

TSH 8.25 mIU/L (0.27 - 4.2)

free T4 13.8 pmol/L (11 - 21.2)

15 Jul 2022 I was on 125 mcg

TSH 1.12 mIU/L (0.27 - 4.2)

free T4 11.5 pmol/L (11- 21.2)

16 Feb 2023 I was on 125mcg

TSH level 16.9 mIU/L (0.27 - 4.2)

free T4 12.7 pmol/L (11.0 - 21.2)

26 May 2023 From 23 Feb 2023 my dose had been increased to 150mcg

TSH 0.07 mIU/L (0.27 - 4.2)

free T4 15.4 pmol/L (11- 21.2)

free T3 4.5 pmol/L (3.1 - 6.8)

1 Jul 2023 I was on 150 mcg

TSH 0.07 mIU/L (0.27 - 4.2)

free T4 19.4 pmol/L (11- 21.2)

free T3 5.4 pmol/L ( 3.1 - 6.8)

[greygoose]

Excuse me for altering the formate of your results, but the less words there are, the easier it is to understand - so many useless words! Especially the word 'normal', which just means that your result is somewhere within the range, but doesn't mean 'normal' as we understand it!

Such a pity they didn't do the FT3 for all these tests, because T3 has a greater influence on TSH than T4. And, you look to be a poor-ish converter. That is especially visible in your July 2023 results.

But, yes, in answer to your question, the variations in levels could have a lot to do with Hashi's, which is slowly destroying your thyroid. But, at least your doctor hasn't reduced your levo at any point.

So, continue to monitor your results and when you see that your conversion has got really bad, demand to see an endo to try and get some T3 added to your levo.

These are my TSH/T4 for 2019- 2023

14 Feb 2019 I was on 100mcg

TSH 0.57 mIU/L (0.27 - 4.2)

free T4 18.1 pmol/L (12 - 22)

19 Feb 2020 I was on 100mcg

TSH 0.05 mIU/L (0.27 - 4.2)

free T4 18.7 pmol/L (12 - 22)

19 Jul 2021 I was on 100mcg

TSH 0.06 miu/L (0.27 - 4.2)

free T4 19.3 pmol/L (12- 22)

22 Sep 2021 I was on 100mcg

TSH 0.90 miu/L (0.27 - 4.2)

free T4 16.6 pmol/L (12-22)

28 Feb 2022 I was on 100mcg

TSH 8.25 mIU/L (0.27 - 4.2)

free T4 13.8 pmol/L (11 - 21.2)

15 Jul 2022 I was on 125 mcg

TSH 1.12 mIU/L (0.27 - 4.2)

free T4 11.5 pmol/L (11- 21.2)

16 Feb 2023 I was on 125mcg

TSH level 16.9 mIU/L (0.27 - 4.2)

free T4 12.7 pmol/L (11.0 - 21.2)

26 May 2023 From 23 Feb 2023 my dose had been increased to 150mcg

TSH 0.07 mIU/L (0.27 - 4.2)

free T4 15.4 pmol/L (11- 21.2)

free T3 4.5 pmol/L (3.1 - 6.8)

1 Jul 2023 I was on 150 mcg

TSH 0.07 mIU/L (0.27 - 4.2)

free T4 19.4 pmol/L (11- 21.2)

free T3 5.4 pmol/L ( 3.1 - 6.8)

[Hidden in reply to greygoose]

Thank you for the advice on formatting and I have altered my post accordingly! Really appreciate that feedback.

Good to know it is indeed the damage wrought by the Hashis. I’m assuming my GP will reduce the dose again and retest in 6 weeks, that’s the norm with my Surgery. After the 6 week should I consider reverting to a higher dose? It’s so tough as I don’t ever really feel different

Thanks for your time and valuable advice!

Cate

[greygoose in reply to Hidden]

Refuse a reduction in dose. Your doctor is there to advise you, not dictate to you. You are entitled to reject his advice.

Your TSH is low because your FT4 is high-ish in range. But, your FT3 is only about 50% through the range because you are a poor converter. Most hypos need it up around 75% through the range. You are only over-medicated if your FT3 is well over-range. If you reduce your dose of levo (T4) your FT3 will also drop and make you sicker.

The TSH is irrelevant, and no harm will come to you because it is low. It may have negative effect on your conversion, but even without the low TSH you'd still be a poor converter - most Hashi's people are. Your doctor should not be dosing by the TSH - don't believe anything he tells you about it! - the most important number is the FT3 and yours is too low for good health.

[Hidden in reply to greygoose]

Hello!

This is really great to know, thank you .The GP I am seeing at present is new, hence the unexpected T3 tests. Be nice if I can actually have a conversation with her about it, rather than the usual dismissal - won’t be accepting the lowering of dose, for sure. Thanks again, you’ve been so helpful.

Cate

[greygoose in reply to Hidden]

You're welcome.