Atrophic Thyroiditis: Is anyone familiar with... - Thyroid UK

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Atrophic Thyroiditis

okaykay profile image
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Is anyone familiar with Atrophic Thyroiditis?

A recent ultrasound was titled atrophic thyroid and concluded end stage Hashimoto’s thyroiditis with suspect nodules. We all know end stage Hashimoto’s is not a thing, but I was unaware there was a third thyroid autoimmune disease. I am on the right hormone therapy of T3 only for this particular problem, but wowza! I can now make sense of of the nonsense that I experienced. Just curious if anyone has experienced this?

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okaykay
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radd profile image
radd

okaykay

Yes, hashi comes in two forms.

Goitrous when white blood cells infiltrate the thyroid gland resulting in thyroid peroxidase and thyroglobulin being released into the blood stream, that activates antibodies to try and mop them up. This is also when lymph nodes around the body can become swollen and sore. The thyroid gland eventually goes all fibrous and lumpy as follicular cells disappear.

Atrophic is when antibodies block the TSH receptors and the gland literally shrinks away from under-use. There is no goitre or lumps.

Both forms are common, clinical presentations and symptoms may be the same or similar, types of antibodies may overlap and also with that of Graves Disease.

radd profile image
radd in reply toradd

Reasons why the immune system labels the thyroid as foreign tissue and creates an autoimmune response is thought to be or a mixture of; genetics, other endocrine imbalance or autoimmune conditions, chemical exposure (smoking, recreational drugs, chemicals), responses to viruses and other antigens, stress responses, certain foods (gluten, iodine, etc) and more.

tattybogle profile image
tattybogle

Yes , but despite many attempts to clarify something about it i'm still a bit in the dark about one aspect.

i never got a goitre , or swollen thyroid , or any thyroid pain, nothing ,and no lumps as far as i know.

But i had TPOab >3000, and was put on levo with TSH 6.8 after yrs of hypo symptoms starting in pregnancy with a probable hyper phase first which as missed at the time but obvious in hindsight.

So when i first read about Ord's disease i though it was "hashimoto's without a goitre" and that was what i'd got.

Then i read about Atrophic thyroiditis /Autoimmune Atrophic Thyoiditis AT/AAT....which is now blamed on the blocking type of TRab (stopping TSH working) so in theory AAT will have very high TSH at diagnosis , because TSH would keep rising , but not have any effect, and so thyroid shrivels up from under stimulation.

Where i get lost is ... is Ord's disease the same or different to AAT ?

I wondered about checking TRab , but given how 'low' my TSH was at diagnosis it seems unlikely that i've got blocking antibodies.

Of course if anyone ever thought i was interesting enough to do some sort of thyroid scan on i might get to know if i've even still got one.. but i'm not so i don't know, but sometimes my fT4 goes up without good reason so i think i probably still have something, and i was diagnosed 20 yrs ago.

Maybe if i ever go to the doctors again i'll ask him to feel for a thyroid... do doctors still know where to feel for a thyroid ..... or have they stopped teaching them where it is ?

greygoose profile image
greygoose in reply totattybogle

do doctors still know where to feel for a thyroid ..... or have they stopped teaching them where it is ?

lol I don't think they know where anything much is, these days. Try asking a GP about adrenals.

I was much like you, very high TgAB, not so high TPOab, very, very small thyroid - and I did have a scan because I'm in France where they like to pay with/show off their fancy machines. No name was every put to my diagnosis, just, "well, you're hypo... Oh! you have antibodies!" And that was all the information I ever got. What I've since surmised, I've picked up from various forums, but I suppose I do have Ord's. I just don't know. All academic, now, anyway, because it's dead as a doornail. And, I'm just thankful to have never had a goitre. I'm so superficial! :)

tattybogle profile image
tattybogle in reply togreygoose

:)

if you never had a wattle , don't the other geese laugh at you ? (or is that just turkeys ?)

P.s do you ever post vitamin advice on here .... backyardchickens.com/thread...

??

greygoose profile image
greygoose in reply totattybogle

That's turkeys, you... goose! Geese don't have wattles. And, not the same as a goitre, anywhere.

But, the wobbly geese story sounds just like me! I'll have to increase my B complex. lol

okaykay profile image
okaykay in reply togreygoose

Did you have nodules?

greygoose profile image
greygoose in reply tookaykay

Oh, yes! Lots of them.

okaykay profile image
okaykay

Thank you all for responding with helpful information and definitely some laughter. As I said wowza! it explains a lot about my crazy journey, I meant that literally. I have learned more from other patients than any doctor I’ve seen. I know I’ve taught the doctors a few things too. I was originally treated for graves in October of 2015. I had all the symptoms and my TSH was 0.01, but the only other tests done by that endo was FT4 and FT3, both were normal. She ordered no antibodies testing, none. I was on methimazole for 6 months and very sick. Methimazole raised my TSH to 14.8, which is when I was told to stop the med. I was almost a year without anything, but my PCP did labs and my TSH was as at 55.6 and TPOab was 1,378. He diagnosed me with Hashimoto’s thyroiditis with nodules, which were present before any treatment from endocrinologist. I was put on levothyroxine and it didn’t help other than making labs in range. I then found this group and started reading and reading. This group is where I learn about conversion issues and T3 only treatment. My PCP had no problem giving me T4/T3 combo, but that didn’t work either. I started T3 only in January of 2019 and over time with dose adjustments I got better. I was shocked at the US results this past week as I had never come across atrophic thyroid or I did and assumed it didn’t apply to me. My PCP died of Covid in December. He was my rock and alway told me I had graves and Hashimoto’s. I had no clue what he was saying, but now I do. I have had pain in the thyroid area, been choking on food, having pills/vitamins get lodged near my thyroid and have had extremely sore lymph-nodes in my jaw, neck, and front of my ears. My voice gets very raspy and I feel like something is pressing on my trachea. I saw my rheumatologist and he said “you have TMJ go see your dentist” and an ENT said I have gerd.🤦‍♀️

The FNP-C in my PCP office actually palpitated my thyroid and didn’t like what he felt, which resulted in the ultrasound this past Tuesday. I did find out yesterday that another PCP is taking over the practice of my deceased PCP and is keeping the FNP-C on board. I am relieved as this is a private practice and not affiliated with our local hospital. They will refer you anywhere, because they can. 😊

I so appreciate all of you. I really am stumped at how little an Endocrinologist knows about thyroid disease and at how many other specialists know nothing about it either. I’m sure a biopsy is in my very near future.

Thank you for all the responses and for the giggles that came with them.

Our Adam’s apple is not the dang thyroid! 😂

I will check out ord’s disease. You all are amazing people and I have found great comfort in the knowledge you share. Docs definitely don’t know much.

God Bless each of you! ❤️

tattybogle profile image
tattybogle in reply tookaykay

If you fancy getting brain ache trying to understand different sorts of autoimmune thyroid problems you could read these :-

thyroidpatients.ca/2020/04/...

thyroidpatients.ca/2020/04/...

thyroidpatients.ca/2018/12/...

plus everything else you ever wanted to understand , and loads you possibly can't (well i can't anyway)...

thyroidpatients.ca/home/sit...

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