Overactive again, but why? What to do?

[InkyFingeredPrinter]

I have an endo appt on Monday (25th Sep 2023). Before that, I'd appreciate your thoughts on what you all think may be happening and why. It might help me get the most out of the appointment.

Apologies for the long post — I felt I needed to fill in some background.

History

It has been a while since I posted. In early-mid 2022 I developed an overactive thyroid (having been in remission for many years). On 13 June 2022 my results were:

TSH <0.01 (0.30 - 4.20mu/L)

T3 18.7 (3.10 - 6.80pmol/L)

T4 42.3 (11.00 - 22.00pmol/L)

I was started on carbimazole by my GP 10mg once daily and propranolol for symptom control. On 12 July 2022, at my checkup blood test after 30 days, I had zero neutrophils (agranulocytosis) and was hospitalised for neutropenia for six days.

(I had previously had carbimazole on block replace 20-odd years back when Graves was diagnosed, and was fine with it then.)

Blood results from 12 July 2022 were:

TSH 1.8 IU/L is regarded as positive, TRAB 1.0 TO 1.8 IU/L is equivocal, TRAB <1.0 iu/l is regarded as negative)

By 22 July my neutrophils had recovered, TSH was 0.01 and FT4 18 (same ranges as before).

After that my TSH was <0.01 on two occasions, but FT3 and FT4 within normal range.

On 5 Aug 2022:

TRab: <1.5 (equivocal but nearer positive than negative)

In Nov 2022 TSH was 1.83, and FT3 and FT4 within normal range.

In Feb 2023 TSH was 2.8. FT3 and FT4 not tested.

I was discharged from endocrinology in April 2023. At that point the endo said:

Blood results from Feb 2023: TSH = 2.8

Blood results from Aug 2022: TSH receptor antibodies and TPO antibodies negative

Ultrasound thyroid Oct 2022: normal thyroid gland with no nodules

He thought the fact I was an ex smoker (having stopped in my early 30s) and that my mother had a thyroid problem (I don't know what it was, but I think she had an operation on her neck) could be driving my thyroid problems.

He said because antibodies were not positive it suggests that it's not an autoimmune cause (i.e. not Grave's Disease), though I did have symptoms that are associated with Grave's Disease. Apparently 95% of people with hyperthyroidism have positive antibodies, i.e. they have Graves. I fall into the 5% that are a bit peculiar.

Consultant could not say what caused the flare-up. Also not sure why it cleared itself up, because I had not had a full course of Carbimazole. Did suggest it might have been an infection. He said that thyroid is often involved in reacting to infections.

We didn't think to mention it, but I had cellulitis in Aug 2021, plus a diagnosis of osteoarthritis, about 6 months before the blood tests first showed I was overactive.

What's going on now

Since being dismissed in April 2023 I've felt OK, but started getting a fast pulse recently and other hyperthyroid symptoms near the end of August, so got a blood test on 6th Sep which showed I was hyperthyroid again:

TSH <0.01 (0.30 - 4.20mu/L)

T3 12.3 (3.10 - 6.80pmol/L)

T4 42.3 (11.00 - 22.00pmol/L)

TPO 18 (0.00 - 34.00iu/mL)

Thyroglobulin - (PH) - A - NORMAL - No further action required

Newcastle RVI

Not indicated for Graves disease.

Sample will be stored for 1 month.

Thyroglobulin autoantibodies

NA

ESR (erythrocyte sedimentation rate): 9 (range 0.00 - 15.00mm/h)

Serum vitamin B12 407 (180.00 - 640.00ng/L)

Serum folate 10.6 (3.00 - 20.00ug/L)

Note: there was no result or range shown for Thyroglobulin, but I'm including everything about it that was in the results. I don't know if NA means not tested for, but if not then why does it say normal?

I have not been tested for:

- TGab

- TSI

- ferritin

- vitamin D

I'm seeing endocrinology again on Monday. Is there anything you suggest that I should ask? Any insight you might have into what is causing my hyperthyroidism? I'd really appreciate your thoughts. Thank you very much.

[pennyannie]

Hey there again ;

Just looked back and see we have spoken before :

You are wondering why it's happened again - as mentioned before - we are looking at an AI disease for which there is no cure and everyone's journey with Graves unique to them, and why it's so poorly understood and badly treated.

However common triggers are known to be stress and anxiety and having just reminded myself of your situation - you were shielding for your partner -

I don't know what's going on now but you might like to read the following link -

pubmed.ncbi.nlm.nih.gov/349...

and there are several other papers listed on this one research paper.

[InkyFingeredPrinter in reply to pennyannie]

Hello! Yes, I'm still mostly shielding for my partner, so stress has certainly been an issue since the pandemic started. I am doing meditation and qigong, but need to do more and really make it part of a daily practice.

My confusion is more that the endo seemed to be saying that the tests indicated that it wasn't Graves and isn't autoimmune.

That link seems to be talking about oncogenic transformation? How is that related to Graves? I'm not terribly medically aware, so please forgive me if I'm not understanding the connection.

If I really focussed on stress reduction, do you think that the overactivity might resolve of its own accord? Or is that wishful thinking?!

Thanks ever so much for your reply and for remembering.

[pennyannie in reply to InkyFingeredPrinter]

I think your endo is equally confused and seeing many more cases of questionable readings in the current climate :

[InkyFingeredPrinter]

Thanks

[pennyannie in reply to InkyFingeredPrinter]

There is a section within Elaine Moore's website that suggests alternative and more holistic treatment options - might be worth a try if you hadn't last time around ?

elaine-moore.com

[InkyFingeredPrinter in reply to pennyannie]

Thanks, I actually started looking at that the other day. I think I bookmarked it after you mentioned it before.

[tattybogle]

Hi ,there That Aug TRab result wasn't truly negative though .. it was equivocal.

and you were not actively hyperthyroid at that time , your T4/T3 level had gone down , so then that could explain why that TRab result was not hugely high (the Stimulating form of TRab are what cause thyroid to make excessively high T4 / T3 levels).

It would make sense to find out what TRab levels are now , when you have high T4//T3 levels .

or more specifically , to find out if you have the stimulating form of TRab ( by testing TSI Thyroid Stimulating Immunoglobulins )

[InkyFingeredPrinter in reply to tattybogle]

Hi there, oh, that is a really good point. Checking my spreadsheet I have only had TRab tested twice, and both times T4 & T3 have been in range.

The first time (Jul 22) it was <1.0 (negative). TSH was <0.01.

I'll ask if we can test TRab and TSI.

Thank you.

[SlowDragon Administrator in reply to InkyFingeredPrinter]

And test vitamin D and full iron panel including ferritin

And coeliac blood test

[InkyFingeredPrinter in reply to SlowDragon]

Thank you very much, I'll add it to my list.

[tattybogle in reply to InkyFingeredPrinter]

You're Welcome InkyFingeredPrinter

while you're here ,we need your help ... please consider signing and SHARING this petition for thyroid research funding : healthunlocked.com/thyroidu....

if you have signed already THANKYOU

[InkyFingeredPrinter in reply to tattybogle]

Thank you. I've signed it. Very sorry for the slow reply, life has all been a bit much.

[Litatamon]

No help but I am so sorry for what you are going through Inky. Hope you get some answers soon.

[InkyFingeredPrinter in reply to Litatamon]

Thank you very much, that's very kind of you to say so. I'm sorry for the slow reply. I've been struggling with work pressure, and everything has felt a bit much.

[Litatamon in reply to InkyFingeredPrinter]

Hoping that you have received some guidance & insight, on how to best move forward.

All the best to you.