Possible viral thyroiditis, after toxic nodule

[happyp]

I'm so confused. I had a thyroid scan today, as I have recently been diagnosed with a reoccurring of my hyperthyroidism, this is after having half my thyroid removed in 2018 for hyperthyroidism caused by a large toxic nodule. Negative graves antibodies, and I think negative grave antibodies now. We were expecting another toxic nodule, but no nodule. There is diffuse changes to the thyroid, indicative of thyroiditis!

My numbers dropped drastically in 3 weeks of being on 20mg carbimazole. So dramatically that I'm concerned I'm going to be hypo if I carry on.

My t4 went from 63 to 23

My t3 went from 30 to 6

Tsh stayed at 0.02.

My numbers had never been that high previously, with the toxic nodule. And symptoms were much worse this time.

So what is going on? I'm thinking it could be temporary viral thyroiditis? I guess, but my numbers were a little high a year ago, but in a weirdly intermittent way, low tsh and then normal two months later, but borderline high t4 both times. I was only every borderline hyper until 2 months ago. And also viral thyroiditis, randomly, after toxic nodule? Two unrelated, relatively rare, hyperthyroid events? Or is it graves with negative antibodies? But graves after a toxic nodule? It just all seems really unlikely

I have an uptake scan next week which will answer it, but any ideas?

[greygoose]

Have you had your Hashi's antibodies tested? Sounds like Hashi's to me.

[happyp in reply to greygoose]

I have never had any low thyroid issued though, its always been raised.

[greygoose in reply to happyp]

Depends what you call 'low'.

[happyp in reply to greygoose]

My numbers have always been normal to high, even after surgery when relying on half a thyroid. I worried my half thyroid would struggle but it never did, not for 3 years until it went hyper again.

[greygoose in reply to happyp]

OK, but the thing is, 'normal' just means within range. But, as the ranges are so wide, you can be hypo whilst still being within the ranges.

Even so, I would want my Hashi's antibodies tested, because you just never know.

[SlowDragon Administrator]

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis) or Graves

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

In U.K. medics never call it Hashimoto’s, just autoimmune thyroid disease (and they usually ignore the autoimmune aspect)

Recommended on here that all thyroid blood tests early morning, ideally before 9am

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

Hashimoto’s frequently starts with transient hyperthyroid results and symptoms before becoming increasingly hypothyroid

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

Link about Graves’ disease

thyroiduk.org/hyperthyroid-...

Graves antibodies should have been tested before Carbimazole was started …..were they

Graves Disease antibodies test

medichecks.com/products/tsh...

[tattybogle]

"Or is it graves with negative antibodies? "

Graves antibodies are TRab (Thyroid Stimulating Hormone Receptor antibodies)

there are 3 kinds:

~ stimulating , these act like TSH and cause thyroid to produce more T4/3

~ blocking , these block TSH from getting into thyroid, and cause hypothyroidism.

~ neutral /cleavage, i'm not absolutely clear what they do , but in effect . 'not much' ? ..

I don't think ? it's actually possible to be hyperthyroid from Graves Hyperthyroidism without having TRab antibodies ... because it is the antibodies that cause the thyroid to overproduce T4/3 .

If there were no TRab to mimic TSH , there would be no overproduction of T4/3 . (unless perhaps the test showed a 'false' negative for some technical reason ?)

It will be interesting to here what your current TRab results are when you get them.

Hashimoto's antibodies ~ TPOab (Thyroid Peroxidase antibodies ) these are often found in hashimoto's, but they are also present in quite a lot of Graves patients . Unlike TRab ,they don't 'do' anything to thyroid , and don't influence its production of T4/3 .... they are part of the immune systems 'clean -up' process to clear away thyroid peroxidase that has been spilled from a damaged thyroid.

i agree with Greygoose , your results wobbling around last year , and then having a sudden large dump ofT4 and T3 now would fit with autoimmune hypothyroidism (hashimoto's ) It often starts with a transient 'hyper' phase(s) , as the thyroid is damaged , it dumps loads of T4/T3 all at once .. then you go hypo.

? did you have covid before this thyroiditis happened .. there have been some reports of (usually transient) thyroiditis following covid infection i think.

[PurpleNails Administrator]

I have a toxic nodule. It causes elevated thyroid levels, but often the TSH drops 1st lowering production from thyroid. Then thyroid levels can rise gradually.

If TSH wasn’t Drs focus it can take years for actual thyroid levels to climb and by the sounds of it your thyroid levels were not severe when drs treated the TSH by removing nodule.

I know from looking through my own old hospital records is took nearly 5 years for my FT3 to go from borderline high to nearly double range my FT4 was just over range when diagnosed.

Antibodies get very conflated because often drs test for a single “autoimmune antibodies” and if negative say it’s not autoimmune but don’t test other or all antibodies.

TPO & TG antibodies are often high with Hashimoto’s / autoimmune thyroiditis but also present with Graves. Have they been tested?

TSI and TRab are accepted as positive for Graves.

If you have multi nodular goitre, multiple hyper nodules can overproduce. So a recurrence of hyper from a nodule/s does occur.

If scan indicates thyroiditis you would expect TPO & TG antibodies be positive but the are not present in every case.

So I would appear to be a separate issue. There are lots of cases reported on here that different separate issues occurring so it does happen probably more often than you would expect.