Thyroiditis of unknown origin

[Curious123]

Hi All, I have been diagnosed with a thyroiditis of unknown origin, confirmed not autoimmune. I was hyper when diagnosed. My FT4 has now dropped back into range but my FT3 is still high and TSH still suppressed. We are monitoring to see it goes back in range and ensure I don’t subsequently go Hypo. Just wondering if anyone has had this, how long it took for things to settle and your thyroid to go back into range? Cheers!

[greygoose]

Well, sure sounds autoimmune to me! How did they confirm it wasn't? And, how on earth are they going to " ensure I don’t subsequently go Hypo"?

[Curious123 in reply to greygoose]

Originally they thought it might be Graves but my TSH Receptor and TPO were negative. TgAB was deemed negative at 115 - Range 0-115. 🤷🏼‍♀️ The ensuring I don’t go hypo is basically just monitoring the level and if it goes hypo as the thyroid corrects itself then potentially intervening if necessary.

[greygoose in reply to Curious123]

Yes, but intervening how?

TPO antibodies fluctuate. So, just because they were negative on the day they were tested, doesn't mean they're always negative. Also, not all Hashi's (Autoimmune Thyroiditis) patients even have raised antibodies. You can have Hashi's without them, because the antibodies are not the disease.

Have you had an ultrasound on your thyroid? If not, I would think that should be the next step.

[Curious123 in reply to greygoose]

The initial Graves thinking was because my Dad has Graves. I did have an ultrasound with a consultant radiologist. They said my thyroid had a fine nodular appearance but all generally 2-4mm and even so they thought it was normal and didn’t think I had a thyroiditis. I had an ultrasound last April (2min max with a sonographer, this time around was much more detailed). My thyroid function wasn’t tested at that time however that scan said my thyroid was smooth with borderline large right lobe (which is apparently now normal in size and nodular). The scan in 2020 gave a U2 rating. We didn’t discuss intervention but I’m guessing if I go hypo and stay that way then levothyroxine?

[greygoose in reply to Curious123]

That's the usual way, yes.

It depends how much damage has been done to the thyroid whether it shows on the ultra-sound. But, you should bear in mind that one negative antibody test does absolutely not rule out Hashi's.

[Curious123 in reply to greygoose]

Yeah, I have PA and with family history of autoimmune conditions and thyroid issues, I’ll definitely continue to keep an eye on it. Hoping it’s been caught quickly as thyroid and other antibodies were ok in Jan20, so think it only went out around June/July and has started correcting already.

[greygoose in reply to Curious123]

Well, no. That's not how it works, I'm afraid. You may have caught it early, but unless you correct the root cause, it's going to continue. And, quite how you'd find the root cause, I don't know. Hashi's is forever. I don't know how you could stop it.

And that's the pattern it takes: The immune system attacks the thyroid, causing the the dying cells to dump their stock of hormone into the blood, causing the high levels of FT4/3 which resemble hyperthyroidism. Over time, this excess hormone is going to be used up/excreted and the levels go down. Quite how low they go depends on the severity of the attack and how much damage it did. You might go hypo, you might stay euthyroid for a while.

But, sooner or later, there will be another attack, and more damage done to the thyroid, and another 'hyper' phase. And, so it will go on until the thyroid is completey destroyed.

And, if you have PA, and a family history of thyroid problems, I'd lay money on you having Hashi's, I'm afraid.

[Curious123 in reply to greygoose]

Any recommendations on follow up blood tests? My Endo was private but NHS GP is doing the follow up thyroid panel which I’m guessing will be FT4, TSH and potentially FT3 (that was the diag panel when confirming on NHS my private TSH and FT4 result). Blood test is in 4 weeks (8 weeks on from last one).

[greygoose in reply to Curious123]

You'll be lucky if you get FT4. Very often it's just TSH. And very rare to get FT3. Do you want information about private testing?

[Curious123 in reply to greygoose]

That would be helpful thanks. On NHS I got TSH, FT4 and FT3, but TSH was suppressed at <0.02 and FT4 was high so probably helped support getting FT3 also.

[greygoose in reply to Curious123]

Yes, probably. But, they don't do it every time, even though it's the most important number.

Details of private testing here:

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

[Curious123 in reply to greygoose]

Hi greygoose. 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 > double what it was). Wondering if you had 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]

Test was with Thriva and unfortunately haemolysed so the iron panel wasn’t run but my Ferritin had jumped up again so likely something inflammatory going on.

[greygoose in reply to Curious123]

Well, so much for their theory that you definitely don't have autoimmune thyroiditis. You very definitely do! Those TgAB say so.

Your FT4 is now only 31.97% through the range and your FT3 48.65%. So, well on the way to hypo. So, not surprising if you have some inflammation - didn't you get the CRP tested?

[Curious123 in reply to greygoose]

This time round no CRP as historically it has been low even though my Ferritin has jumped around when monitored by the Gastroenterology team.

How does the % calculation work?

[greygoose in reply to Curious123]

chorobytarczycy.eu/kalkulator

You put the result in the first box, the bottom of the range in the second, and top of the range in the third. To get the results you click on Oblizc.

[Curious123 in reply to greygoose]

Thanks. Is there an English version of the website to explain the overall concept, not just to get the calculation? Also, would this current fluctuation in my thyroid/antibodies cause a disturbance in sleep? I only get 4.5-5.5 hrs a night and always seem to wake up as TEM sleep would be about to occur,

[greygoose in reply to Curious123]

As far as anyone knows, not there isn't an English version - or someone does know, they haven't told us! What concept is it you want to know about?

Antibodies themselves would not affect your sleep. But, the decreasing thyroid hormones might.

[Curious123 in reply to greygoose]

The reasoning behind wanting to be in the top75% of the range?

[greygoose in reply to Curious123]

Because that's where most people feel best. Don't forget, some of us have been at this for a long, long time. You read what people say, and you have your own experiences, and on average, it appears that most people feel best when their levels are that high. Rather doubtful that site would tell you that.

[Curious123 in reply to greygoose]

Yep, realise that, I just like to fully understand things. I found a website translator if interested.

translate.google.com/transl...

[greygoose in reply to Curious123]

Interesting, thank you.

[Curious123 in reply to greygoose]

So I told my GP about the rising antibodies and sent the result to her last Thursday. She wasn't sure so 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. Said to re-test in 6 months. I am just going to monitor it myself, perhaps monthly with the Thriva test.

[greygoose in reply to Curious123]

What endos know about antibodies could be written on the head of a pin! But, in any case, there's no way any doctor would treat you with that TSH. They like it to be over 10.

[Curious123 in reply to greygoose]

I figure I will monitor and see if it goes Hypo and then hopefully comes back into range as TSH hasn't risen much as yet. But at the same time can also then see if the antibodies settle back down or if they just keep rising. If things go out for too long then guess I will go back to the GP and ask another opinion.

[greygoose in reply to Curious123]

Yes, but you'd have to have something out of range other than the TgAB, because the NHS doesn't admit that it can signify Hashi's.

[Curious123 in reply to greygoose]

Worst case scenario I seek guidance from my GP back in Australia.

[greygoose in reply to Curious123]

Are GPs knowledgeable about thyroid in Austrailia?

[Curious123 in reply to greygoose]

Hopefully!! My Dad has Graves (although it was pretty definitive as he was in atrial fibrillation when diagnosed) and has been managed quite well.

I did ask my Aussie GP re: antibodies what would be classed as high because per lab tests online, if you have Pernicious Anaemia, mild to moderately elevated antibody levels are likely to be due to the Pernicious Anaemia whilst significantly high levels would be autoimmune thyroid issues.

Response was that often they are double or treble (or more) the upper limit of normal. If they were just above/below the upper limit of normal you would consider them borderline. So I am taking my 237 (0-115) to be now high / positive whilst historically they have been definitively negative and last test were borderline at 115 (0-115). So to me it appears things have just started kicking off.

[greygoose in reply to Curious123]

I would agree with you. But, the NHS sees things differently, I'm afraid.

[Curious123 in reply to greygoose]

Is there a list of recommended doctors here?

[greygoose in reply to Curious123]

You need to email Dionne at:

[e-mail]

And ask for the list of patient recommended doctors.

[SlowDragon Administrator]

To test for autoimmune thyroid disease (aka Hashimoto’s) you need TpO and TG antibodies tested

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

pubmed.ncbi.nlm.nih.gov/303...

20% of Hashimoto’s patients never have high thyroid antibodies

Have you had ultrasound scan of thyroid

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

[Curious123 in reply to SlowDragon]

Thanks, thyroid antibodies all considered negative (TPO, TgAB, TRAB) and thyroid ultrasound seemed “normal”, U2 rating. Will take a look at your links thanks.

[SlowDragon Administrator in reply to Curious123]

So you have PA...autoimmune

Likely Hashimoto’s

What vitamin supplements are you currently taking, apart from B12 injections

What were folate, vitamin d and ferritin results

[Curious123 in reply to SlowDragon]

I have had recurrent iron, vitamin D and B12 deficiency so monthly B12 and mostly daily vitamin D and then folic acids every 1-2 days. All ok, apart from ferritin which started rising (last infusion Nov19). 182 9/6, 272 3/7, 344 31/7, 191 20/8. My iron saturation has been high 31/7 @ 69% and 20/8 at 63%. Free iron also high at same time, which is unusual for me. The endocrinologist thought the iron overload may have caused the thyroiditis but not sure why the iron overload picture - chicken vs egg. 🤷🏼‍♀️

[SlowDragon Administrator in reply to Curious123]

Low vitamin levels strongly suggests Hashimoto’s

All four vitamins need to be optimal

As you have B12 injections it’s recommended also to supplement a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial. (Rather than just folic acid)

This can help keep all B vitamins in balance and will help improve B12 levels too between injections

Difference between folate and folic acid

chriskresser.com/folate-vs-...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)

Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

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

endocrinenews.endocrine.org...

Vitamin D

GP will often only prescribe to bring levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better

ncbi.nlm.nih.gov/pubmed/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7

It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average

Calculator for working out dose you may need

40ng/ml = 100nmol

grassrootshealth.net/projec...

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

With your Vit D, are you also taking it's important cofactors - magnesium and Vit K2-MK7?

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

[SlowDragon Administrator in reply to Curious123]

humanbean may pop along re iron and ferritin

[Curious123 in reply to SlowDragon]

Thanks. I don’t absorb iron tablets adequately, so have had iron infusions every few years since first found to be IDA. My Gastro said some people with PA have issues with iron but they don’t know why.

[Curious123]

Thanks for the info. My vitamin D is sitting around 90nmol/L and I take 1-2,000iu daily in gel cap form. I have osteopenia although no one knows why. Potentially because of the two bouts of vitamin D deficiency - cause unknown.

Aware of the relevant co-factors of K2 and magnesium. Magnesium is also needed with PA (may be autoimmune gastritis but currently classed as PA) and aware of the need for the other B vitamins as they all work together. I am MTHFR negative.

Not taking any biotin supplements.

I also have Endometriosis. Iron deficiency was historically blamed on heavy periods but these are mostly suppressed now so waiting to see if my iron maintains or continues to drop, thereby pointing to an alternative cause.

I could improve my co-factor supplementing a bit.

[jimh111]

Have you been ill during the last couple of months? It could be subaccute thyroiditis, or it could be of autoimmune origin. What matters is your results in a month's time, if they are OK then nothing to worry about unless you get another attack sometime in the future.

More likely thyroiditis than an autoimmune condition.

[Curious123 in reply to jimh111]

Hi, no, not ill in the last few months, no cough, cold, etc. there has been a lot of life stress so wondering if that triggered it.

[Lora7again in reply to Curious123]

Stress can be a trigger I became ill after watching my best friend die from cancer. Others have also had traumatic experiences trigger Graves'. I am starting to have some off days at the moment and I really need a blood test to see where my levels are at the moment. My last test was 6 months ago and my TSH was 0.38 and my T4 was 22 which is top of the range. Luckily my T3 was well within range but things can change quickly with Graves' and stress is a big factor. Also I cannot drink more than one coffee a day because that gives me palpitations. Just to add I think I have had episodes of being hyper for years because I have had times when I very full of energy and not sleeping for 48 hours. After I had both my children I was back into my pre baby clothes within weeks. I never had my thyroid tested then because I knew nothing about the disease. My GP actually showed me a graph of all my TSH results and it took many years for it to drop to 0.002 which was suppressed. I would make sure you are monitored and have regular blood tests.

[Curious123 in reply to Lora7again]

Thanks, yes I am being monitored. A lot of the time my TSH usually sits between 0.5-1. This is the first time it has dropped below 0.47 (previous low). My GP was good and right on it when I provided my private test and she gave me the option to go NHS or directly private to get a quicker turnaround.

[Esinedharry]

Hi I was Hyper in 2000 and was prescribed Carbimazole . I took it for 2 years with 6 monthly blood tests and I did then become hypo. My GP advised I stop the Carbimazole and after a few weeks my blood tests were deemed in range. However in 2007 after a blood test for something else i was told I now had Hypothyroidism! I am still struggling to get my GP to understand my Levothyroxine meds and have had great help from this group.

[Ohrid]

Hi just to say like comment above wondering if this could be sub-acute thyroiditis, esp given your thyroid showed enlarged on the scan. Have you had any tenderness in the thyroid? Can be diagnosed through depressed radioactive iodine uptake (RAIU) scan combined with tests you’ve had, which could help rule it out/in.

[Curious123 in reply to Ohrid]

No tenderness. The borderline large lobe was 2019 scan, the recent 2020 scan said it was normal size. My endocrinologist believes it is a thyroiditis (not autoimmune).

[praxis]

I have Hashi but 23 years ago I too was Hyperthyroid with no evidence of auto-immune problems. It took about 4 years to stabilise my readings and then within 18 months I put on 15 kilos and my tests showed the Anti-bodies (not present before) that meant auto-immune probs and Hashimotos.

[Curious123 in reply to praxis]

Sorry to hear that. 🤞🏻not the case for me.

[Jaybrooke]

There is de quervains thyroiditis,this goes through two stages first , hyper with all symptoms followed by stage two , hypo with symptoms of under active . Not nice but does go unlike Hashi.