Thyroiditis of Unknown Origin - Part 2 - increasing ABs, Iron?

[Curious123]

So I have had a private monitoring test via Thriva, basically 6 weeks since my last test. My TSH is very slowly rising but still below range and FT3 and FT4 have now fallen back to within range. Both TPO and TgAB have risen and TgAB is now considered high. Wondering if anyone has any thoughts on these results:

02/10. 13*-20/8 31/7-5/8

TSH 0.13. (<0.02) (<0.01) [R: 0.27-4.2]

FT4 15.5 (22.9) (29.8) [R: 10.8-25.5]

FT3 4.9 (7.9) (7.6) [R: 3.1-6.8]

T4 94

TPOAb 11.9 (<9.0)* [R: 0-34]

TgAB 237 (115)* [R: 0-115]

I tried to have an iron panel at the same time as ferritin stand alone is pointless for me. But unfortunately the sample haemolysed. Any recommendations to avoid this? I was very careful to not squeeze my finger.

My Ferritin has jumped back up again. Has anyone experienced issues with high/fluctuating ferritin (aware it is an acute phase reactant)? I wanted the panel as my last couple of tests showed high saturation and free iron as well. The Endocrinologist I saw thought it wasn’t autoimmune as TPO 115, and that my iron status may have something to do with the thyroiditis - chicken or egg query. Any ideas? Recent ferritin below (my history has been falling/recurrent iron deficiency), so definitely something going on with my body!

Ferritin:

15/11 - 68

27/11 - 1g Ferinject iron infusion

18/01 - 348

02/03 - 311

30/04 - 260

09/06 - 182

03/07 - 276

31/07 - 344

20.08 - 191.1

02/10 - 276

Sleep beyond about 5hrs is limited, I seem to always wake at the start of the REM cycle. I feel like my stress has significantly reduced so not sure what is going on.

Thanks in advance!

[Jazzw]

You’ve got out of range antibodies now—it’s definitely autoimmune. Alas, so many endocrinologists are not worthy of the title...

How are you feeling? Can I just clarify—you’re NOT on any thyroid hormone replacement are you? Couldn’t see that you were from your last post.

[Curious123 in reply to Jazzw]

Thanks for your reply Jazzw. Doing ok. I’m reasonably tired, but then my sleep has been pretty crap. Not as fatigued as I was feeling in July/August when I was hyperthyroid.

No I am not on any thyroid replacement as the thyroid panel the endocrinologist did showed that the thyroid was moving back into range as the FT4 had dropped (even though FT3 was slightly up on the first test).

I guess I have the question of what is considered a high result? I also have pernicious anaemia and lab tests online Australia says mild to moderately elevated levels of thyroid antibodies may be found in other autoimmune disorders including PA. If significantly increased antibodies then it most frequently indicates thyroid autoimmune disease. 🤷🏼‍♀️

[Jazzw in reply to Curious123]

I think I’d call that “significantly increased” now. Probably not what you want to hear but...

OK. So... my worry with your TSH being low like that is that there’s nothing to stimulate your thyroid to produce T4 and T3 when you need it. So you might be slumping into hypothyroidism next. On the other hand, your thyroid—if this *is* Graves or Hashimoto’s—might suddenly have another burst of overactivity and send your thyroid hormone levels soaring.

Raised ferritin at the levels yours has risen to suggests inflammation somewhere (could be anywhere) so it gets hard to know at this point (without a full iron panel) what your iron levels are actually doing.

[Curious123 in reply to Jazzw]

Thanks. Yeah, was aiming for a full iron panel but the blood haemolysed. May have to try again. Last 2 tests showed elevated saturation @ 69% and 63% so something is definitely off. I have endometriosis so that may not be helping things.

[Curious123 in reply to Jazzw]

Not sure if it’s a related symptom but I came off an antibiotic for acne about a month ago and my face has gone into an extreme breakout. Could that be related? Hair also feels a bit dry. Definitely some weight gain (2-3kg). I did go away and had a few cream teas but there was a lot of walking. Diet hasn’t been so great of late so not sure if it’s related to that or the thyroid.

Definitely agree heading down the path of going hypothyroid. My TSH since 2012 has averaged 1.13, dropping to low range ~0.5 each time I have been iron deficient and required an iron infusion whilst my FT4 averaged 18.76. Lowest prior was 16.1 last year.

[Jazzw in reply to Curious123]

The break out could also be due to dropping thyroid hormone levels. My skin took a bit of a battering during the period when my thyroid began to fail.

It’s difficult stuff this, isn’t it? I wish I had some definitive answers for you but unfortunately this is going to be a bit “wait and see”, I’m afraid.

[Curious123 in reply to Jazzw]

Thanks. Yeah, the interesting part is because the antibodies were initially negative and the ultrasound clear (U2), she said it’s a simple thyroiditis the GP can manage. Not sure how it will go down if I go back to the GP with a private test and say the antibodies have doubled. When I queried the endocrinologist about 115 with range 0-115, they said it would need to be in the 1000’s to be impacting/causing the hyperthyroidism.... 🤷🏼‍♀️ I’ve got an appointment tomorrow so will be interesting to see if they have heard anything back from the haematologist about my iron as she thought that was what was causing the thyroid issue.

[Jazzw in reply to Curious123]

I don’t think that’s true to be honest. The level of antibodies, I mean. I don’t think higher antibodies necessarily=worse thyroid disease—certainly not from what I’ve observed after reading many hundreds of posts here over many years.

They do talk some cr@p, these doctors.

And it’s worth keeping in mind that you may have Hashimoto’s rather than Graves (or if you’re really unlucky you could have both!).

Hashimoto’s is usually a one way trip to hypothyroidism, sometimes after a few flurries of being overactive before your thyroid burns out. Whereas Graves sometimes goes into complete remission for a while (but alas, usually not forever).

[Curious123 in reply to Jazzw]

Thanks. Yeah, I try to keep an open mind, a healthy level of scepticism and never blindly accept what I am told without fully understanding it and the rationale. For me it just seemed off to be TgAB 115 (0-115) “negative” when my historic baseline on those antibodies in Australia has been <=15 (range <60) every time it was tested.

Won’t comment on my level of luck....!

[Curious123 in reply to Jazzw]

So I told my GP about the rising antibodies and sent the result to her last Thursday. She spoke to the endocrinologist on NHS (same one I saw privately) to ask her thoughts. Reply was she still believes I have had a mild thyroiditis that does not require any treatment. No mention of it being autoimmune/cause etc. I am just going to monitor it myself.

[Jazzw in reply to Curious123]

That’s so frustrating isn’t it? I’m afraid doctors and even “endocrinologists” just don’t know enough about thyroid issues.

Good idea to monitor it yourself. I think many of end up doing that because we just don’t get the help we need.

Thanks for the update. Take care x