Diagnosis!

[Oatsforlife]

Histology from a right hemithyroidectomy showed background of Hashimoto’s in September 2024. A month later the left side swelled significantly & a scan showed acute thyroiditis with high vascularity, lymphatic impact & thyroid inferno. The report says it’s unlikely to be Hashimoto’s. Previous (limited) blood tests have been normal so I’m tempted to look privately to get a diagnosis. My main symptoms seem to be insomnia, anxiety and chest issues like breathlessness & racey feeling? Thank You 🙏

[pennyannie]

Hello Oatsforlife and welcome to the forum

What were you diagnosed with that resulted in your having a hemi-thyroiectomy - ?

If Graves is suspected there should be a blood test for antibodies which would look like a Thyroid Stimulating or Thyroid Blocking result and range - or a TSH Thyroid Receptor single number result and cut off :

Can you please share with forum members further information as to your health issue and any thyroid blood test results detailing a TSH - T3 - T4 result and ranges - and any antibody readings you currently have to hand looking like a TPO / TgAB / TSI / TRab / reading and range :

[Oatsforlife in reply to pennyannie]

Hi Pennyannie,

Thanks for replying.

My hemithyroidectomy was to rule out cancer after U4 scan of a lump. Histology said background of and evidence of Hashimoto’s.

The only blood tests done were TSH & Thyroid Peroxidase (despite me asking for more) and both were normal. TSH was 0.69 before my operation & 2.61 after (range .27 to 4.2). Thyroid peroxidase was 11 & 7 on latest tests (less than 35 range).

The latest scan of left side refers to new solid growth, significant change from normal state in June. The growth has lymphocytic infiltration & very strong vascularity - thyroid inferno. It’s affecting my lymph glands. The report states that Hashimoto’s has reduced vascularity (not increased) & when I looked into what ‘thyroid inferno’ means, it refers to Graves’ disease. The peroxidase test isn’t appropriate for Graves, according to what I’ve seen.

Thank you!

[pennyannie in reply to Oatsforlife]

Yes - you are correct the TPO antibody blood test is for Hashimoto's - a thyroid Auto Immune disease -

and for Graves we need a TRab or TSI antibody reading as detailed above :

However generally with Graves the TSH is low suppressed at around .005 / .001 - as these antibodies collect on and push down on the TSH follicles which in turn causes the over production of thyroid hormones -

With a TSH reading in, and quite high in the range - I doubt this is Graves Disease :

[Oatsforlife in reply to pennyannie]

Ok, thanks again for that.

Do I need to get private testing done to try to get help with my symptoms?

Other than trying to adjust my diet & get enough sleep, I’m not sure what to do to improve things.

[pennyannie in reply to Oatsforlife]

I reads as though you are still under investigation - or have I missed something ?

Unfortunately forum members tend to end up running their own private blood tests, as detailed below by SDragon if you feel the NHS not as thorough as you would like -

It was only running my own blood tests after posting my question on this forum that I was able to start getting my life back - think I first ' fell in here ' reading around some 10 years ago now - so yes, and once you have back the results just start a new post with all the results and ranges.

A full thyroid panel is around 10/11 bio markers and the base information we need to work up from - a TSH + T3 + T4 + antibodies ( not Graves - that is a separate test at Medichecks ) + inflammation, ferritin, folate, B12 and vitamin D :

[Oatsforlife in reply to pennyannie]

Yes, you’re right, I’m technically under investigation but have been for nearly a year & it’s been pretty miserable. I don’t know how all the lovely people on this forum cope with feeling unwell and feeling like you’re walking through treacle?

I’ll get the private tests & ask for something more sustainable for the symptoms I guess

Thank You again ❤️

[pennyannie in reply to Oatsforlife]

So a year under investigation on the NHS and no further forward - so yes -

might as well start your own Private Blood tests and receive considered opinion on this patient to patient forum :

The NHS are not obliged to accept private blood tests - but it may force their hand - alternatively there is much you can DIY - as vitamins and minerals an essential co-factor to thyroid health - as we need to maintain optimal levels of ferritin, folate, B12 and vitamin D.

I would imagine with only half a thyroid and dealing with Hashimoto's your T3 and T4 levels will present as you dealing with symptoms hypothyroidism - the wading through treacle - being entry level !!

The issue is symptoms of hypothyroidism are found within the NHS ranges -

and there is a reluctance to start prescribing on the NHS until your TSH, T3 and T4 are outside the range and at rock bottom - with some peoples health and well being having been unnecessarily further compromised.

[Oatsforlife in reply to pennyannie]

Thanks to you & Slowdragon for lifting my spirits 😌

Perhaps the ‘thyroid inferno’ phrase isn’t significant as being Graves & just highlights other characteristics of the mass in my neck…

The other issue that I’m not clear on is: if I’m already taking vitamins & supplements (SlowDragon said about stopping some), and I want V&S testing done alongside thyroid testing, should I stop all of them so the tests show the ‘real’ me? I think it’s stop a week before?

[pennyannie in reply to Oatsforlife]

Yes that's correct - so we measure what your body is holding and working with and not that recently ingested -

Also anything containing biotin needs to be stopped as that can ' mess ' with some Laboratory assay measures -

Always start a new post with any new information - as we try and answer as fully as possible within the first 24 hours of a posting as the volume of new post/questions keeps us moving forward and not looking back.

[SlowDragon Administrator]

welcome to the forum

Looking at your forum name, are you on gluten free diet?

Or you just like oats?

If one half of thyroid showed Hashimoto’s, it’s likely the other half is similarly affected

Some people can manage to maintain thyroid levels after hemi thyroidectomy…..some can’t

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune

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

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies

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.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

NHS only tests TG antibodies if TPO are high

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Essential to test vitamin D, folate, ferritin and B12

Lower vitamin levels more common as we get older

For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels

What vitamin supplements are you taking

VERY important to test TSH, Ft4 and Ft3 together

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test

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

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Only do private testing early Monday or Tuesday morning.

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

[Oatsforlife in reply to SlowDragon]

Thank you so much. I take quite a lot of vitamins and supplements & am at the levels suggested - although it’s hard to know if what I buy are any good in reality 🤣

I have tried to improve my diet as the last year has been problematic health-wise. I try to be gluten-free & use oats (also oat milk) a lot.

I have listened to advice about testing & have tests early on an empty stomach. But as you say, despite asking for a wider range of tests, the GP says that the lab won’t do it.

My current symptoms are more hyper like so the scan report referring to an inferno does make sense - I doubt the NHS tests will support that.

I think I’m thrown by histology saying one thing for the right (after a lump was removed) and scan of left saying differently.

And apparently I won’t even see an endocrinologist, my GP will do what they say, based on a few tests that say nothing!

Thank you again, much appreciated

[SlowDragon Administrator in reply to Oatsforlife]

The only blood tests done were TSH & Thyroid Peroxidase (despite me asking for more) and both were normal. TSH was 0.69 before my operation & 2.61 after (range .27 to 4.2). Thyroid peroxidase was 11 & 7 on latest tests (less than 35 range).

So TSH risen noticeably which might explain increased symptoms

TPO negative

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

NHS only tests TG antibodies if TPO are high

20% of autoimmune thyroid patients never have high thyroid antibodies

Anxiety is common hypothyroid symptom……living off adrenaline instead of thyroid hormones

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

Have you had vitamin testing?

If yes…..Can you Add any recent results

Next step……full private testing

Remember

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 if last test result serum B12 was below 500 or active B12 (private test) under 70:

[Oatsforlife in reply to SlowDragon]

Thank you so much - I am pretty desperate with the pain/discomfort, lack of sleep, anxiety & not being able to think properly so private testing is the only way.

None of the reports say I have a goitre - referring to lumps, fibrous tissue and solid masses. Are they just words meaning the same?

I’ve not done private testing yet as my GP wanted to test me - but it seems the labs decide what to do when she submits bloods!

I’ll get private tests done, luckily spotted advice on early test, fasting and stopping my biotin before 👍

Thank you again