Atropic Thyroid disease

[posthinking01]

Hi there - does anyone know about this condition. Had scan yesterday and just small piece of thyroid left.

[greygoose]

You have Ord's Thyroiditis. Which is the same as Hashi's, but the thyroid shrinks rather than swelling into a goitre. The high antibodies confirm that. I have it too.

[posthinking01 in reply to greygoose]

Thanks Greygoose - sorry you also have it - I have the document by William Ord that he presented to the medical establishment have you seen it - if not i will try to send to you when I can find it that is !!!

[greygoose in reply to posthinking01]

No, I've not seen that. I've only recently found out that I have Ord's, and not Hashi's! No doctor has ever told me anything except that I have high antibodies. The rest I had to find out for myself.

[posthinking01 in reply to greygoose]

Have you had a ultrasound ? Mine is now the size of a walnut - William Ord presented that in 1877 they have forgotten more than they know now.

[greygoose in reply to posthinking01]

Yes, I had one when I was first diagnosed - 21 years ago. And my thyroid was already very, very small. So, I must have had the disease for many many years before anyone thought to do a blood test! The truth is, they're just not interested in thyroid. They just don't care.

[posthinking01 in reply to greygoose]

I know they don't I had to go to Belgium to see Dr Hertoge to get diagnosed - but not with Ord's - just Hashi's - and I have Lupus - are you on T3.

[greygoose in reply to posthinking01]

Yup. T3 only. Can't tolerate levo.

[posthinking01 in reply to greygoose]

and are you generally well.

[greygoose in reply to posthinking01]

I suppose I'm as well as can be expected. I was hypo for nearly 50 years before diagnosis and treatment, so probably a lot of irrepairable damage has been done. But, in any case, after all this time, I don't really know what 'well' feels like. I have good days and I have bad days, and for the past couple of years I have very bad days. I might have had covid, but not sure, so who knows what to blame! I don't.

[posthinking01]

Sorry to hear the damage being done to your health - this is awful illness that does not get the treatment it deserves - believe me I have fought to get the authorities to listen but to no avail. What T3 are you on if I may ask and did you get a swollen abdomen before T3 as suddenly again my tummy looks 13 months pregnant.

[tattybogle]

~ The name for the form of autoimmune hypothyroidism that does not have a goitre is Ord's disease /Ord's thyroiditis.

~ Ord's thyroiditis , named after the surgeon Dr William Miller Ord en.wikipedia.org/wiki/Willi... William_Miller_Ord

~ This (very) complicated paper contains the most information i've ever found anywhere about Ord's . The bit that mentions it ,and the antibodies related to it is copied in this post:

healthunlocked.com/thyroidu... different-varieties-of-hashimotos-every-thing-you-ever-wanted-to-know-about-antibodies-lots-youll-never-get-your-head-round

~ Tania S Smith from thyroidpatients.canada writes a lot about what she calls Atrophic Thyroiditis, characterised by atrophied thyroid Gland with the presence of 'Blocking' type TRab (as opposed to the 'Stimulating' type of TRab that cause Graves hyperthyroidism)

................. Basically ~ 'Stimulating' TRab mimic the action of TSH at the TSH receptors on the thyroid, so they promote too much thyroid hormone production (Graves Hyper) ,

.................whereas, 'Blocking' TRab fit on top of TSH receptors and prevent TSH getting into them to tell thyroid to release T4/3, so hypothyroidism follows.

She suggests the presence of 'blocking' TRab would usually mean a VERY high TSH at diagnosis, and they could be responsible for unexpected fluctuations in hyper/hypo states.

Unfortunately measuring the blocking type of TRab gets very complicated.

Some of her articles :

thyroidpatients.ca/2018/12/...

atrophic-thyroiditis/ the-third-type-of-autoimmune-thyroid-disease-atrophic-thyroiditis/

thyroidpatients.ca/2020/04/... the-spectrum-of-thyroid-autoimmunity/

thyroidpatients.ca/2020/04/... /the-spectrum-of-thyroid-autoimmunity/2/

thyroidpatients.ca/2020/05/... infographics-antibody-testing/

~ I've never been 100% sure if Tania's 'Atrophic thyroiditis' and 'Ord's thyroiditis' are both describing the same thing.

~ Not much is written on the subject .

~ Not many of us without enlarged thyroids ever get an ultrasound , so we don't usually find out if it's 'shrunken' .

~ Hardly anyone who is hypothyroid ever gets their TRab tested.

~ And even then it's not possible to measure the 'blocking type' on their own.

So the fact is there is very little information around collected for anyone to study on the subject of atrophic thyroiditis.

in case i've confused you....

TRab = T(SH)Rab = Thyroid (Stimulating Hormone) Receptor antibodies.

[posthinking01 in reply to tattybogle]

Thanks so much for this - I will take a look when I have some time to 'digest- but can't thank you all enough for your time in posting for me.

Are you on T3?

[tattybogle in reply to posthinking01]

no .. 112.5mcg Levo .. I used to be on 150mcg for about 15 yrs. Then, a few yrs after menopause that dose became too much got clear signs of overmedication , so reduced to 125mcg, and then a few yrs after that T4 levels kept going up for no reason despite reducing to 112.5mcg then 100mcg. (but i didn't feel overmedicated on 125mcg and had clear signs of undermediction on 100mcg .. so now i'm back on 112.5 in order to function despite fT4 being way over range.

[TSH110 in reply to tattybogle]

I have concluded Ords must be the same as or a form of AAT and Graves hypothyrodism must be describing the same thing. Perhaps even AAT has different presentations. Pity there is no interest in studying us rarities with AAT and we’re stuck with a situation of knowledge receding rather than advancing. The story of all forms of hypothyroidism if you ask me. That’s what happens when a disease has become to be regarded as just a pile of numbers ….or rather ONE number - TSH ….not something afflicting real living people and giving them symptoms that need addressing. Medicine gone mad.

[posthinking01 in reply to TSH110]

Exactly pity their knowledge isn’t updated generally- I am convinced long Covid is thyroid adrenal related then we might get some help !

[SlowDragon Administrator]

Ord’s thyroiditis according to wiki

en.wikipedia.org/wiki/Ord%2...

I have Ord’s thyroiditis too

[posthinking01 in reply to SlowDragon]

Are those with Ord's on T3 then? Or does it depend?

[SlowDragon Administrator in reply to posthinking01]

Depends

I have gluten intolerance, vitamin deficiencies and heterozygous Dio2 gene.

All these make it more likely to need T3 prescribed alongside levothyroxine

[TSH110 in reply to SlowDragon]

Interesting. I have one gene for celiac disease, feel much better gluten free, and one gene for poor DIO2 conversion and I did have awful vit d deficiency and sub- optimal iron. I felt dire on t4 monotherapy. I wonder if these things are related to the type of thyroid disease or just a strange coincidence.

[greygoose in reply to posthinking01]

I don't think my needing T3 only has anything to do with Ord's. We had a discussion on another thread, not long ago, about people who can't tolerate T4, and came to the conclusion that it could very well have something to do with the length of time you remained undiagnosed. As I said, for me it was nearly 50 years!

However, I would say that those with antibodies are more likely to be poor converters, in my observation.

[posthinking01 in reply to greygoose]

Yes agree - thanks so much

[greygoose in reply to posthinking01]

You're welcome.

[TSH110 in reply to greygoose]

Interesting I missed that discussion. I suppose if no one looks at us scientifically we can’t really ever know anything much about what goes with the territory of AAT. Like you I was decades, but only three not your horrendous 5, getting a diagnosis.

[TSH110 in reply to posthinking01]

I’m on NDT self medicating be feeling pretty good on it for 8 years. Levo never made me well despite close relatives with thyroid disorder feeling great on it. They had primary thyroid cancer so different to what I’ve got - I say with much relief.

[tattybogle]

I probably have Ord's ..... don't know size of my thyroid , but never got goitre. I just noticed your previous post mentioning very high TPOab... interesting .. i had 2499 then >3000 (so 'no idea how high' )at diagnosis which do seem a lot higher than most TPOab levels we see here.

They didn't retest levels afterwards, apart from once, 15yrs later, i still had 195.

(However my TSH was only 6.8 a diagnosis , so i don't fit Tania's 'very high TSH at diagnosis due to blocking TRab' picture)

Wondering if greygoose and SlowDragon also had very high TPOab ?

[SlowDragon Administrator in reply to tattybogle]

My TPO and TG antibodies were “the highest endocrinologist had ever seen”

TSH was only 8

I had been increasingly cold for about 10-15 years before diagnosis. Buy then, even mid summer I would be wearing 3-4 heavy layers, and sleeping with winter duvet in summer and electric blanket

Started on levothyroxine…..and left on far too low a dose …usual tale of woe.

[posthinking01 in reply to SlowDragon]

Poor thing - I don't know why but I feel if this was a problem men suffered more than women - it would be properly looked into.

[SlowDragon Administrator in reply to posthinking01]

9 out of 10 thyroid patients are female

Like all autoimmune disease, there’s far higher number female patients

[TSH110 in reply to SlowDragon]

And this is the thanks we get for being able to give birth to the new generations and the price we can pay for all that hormonal complexity to make it all work. It’s an outrage. If it were men they’d be awarding medals for it and making every effort to resolve any resulting disorders.

[SlowDragon Administrator in reply to posthinking01]

Medicine remains profoundly misogynistic

huffpost.com/entry/opinion-...

[TSH110 in reply to SlowDragon]

Thanks for that link - excellent article about the scandal that’s women’s (supposed) health care and why it’s the case. Pity that she seems a bit of a lone voice on the matter. That should be compulsory reading for all medics everywhere to try and jolt them out of their ignorance and complacency

[TSH110 in reply to posthinking01]

Quite agree

[greygoose in reply to tattybogle]

No, my TPO were only just over-range. It was my Tg antibodies that were very high. My TSH was only 13 on diagnosis.

[TSH110 in reply to tattybogle]

My TSH was undetectable or very low indeed on first panel and I was told I had an overactive thyroid but I said to the doc - that’s the wrong persons test then! I am deffo hypothyroid. They said it was my test not someone else’s and they wanted to do another one to see what was happening, so they were probably a week or two weeks apart the next one came back with TSH 110 so it had sky rocketed in that short time. I had felt very hypo then suddenly I was able to run 10 miles with no effort whatsoever I started flying off the handle and being highly agitated I presume that must have been the final thyroid death dump of thyroxine powering me into overdrive and why the TSH was so low first test. I never had any more hyper episodes after that. Perhaps they missed the peak in your cases it would be very easy if it jumps up like that. I felt like I was going to die in the days after the second test came back I was in a really shocking state. I think the tiny dose of Levothyroxine I was given did save my life the night I took it I was so cold it was hideous that is what perishing in the artic must feel like! I was hallucinating seeing a skull in the mirror looking back at me - terrifying, my moods were all over the place, I though I had gone mad yelling one minute crying the next then thinking god what’s all that about. Just getting from minute to minute was all I could manage. I was not very big on reflexive contemplation as a result. In the last two weeks of it, I started to feel utterly famished and ate huge amounts of food but then felt as famished as before. I might eat three huge meals one after another before that horrible feeling went away for a bit - god knows how I actually cooked it all! Desperation I suppose. I had all sorts of other horrors not being able to sleep till 6am itching in my shins that I’d scratch till it bled, endless headaches. I could hardly hold a conversation and I said a lot of very stupid things my mind was so glacial. I though people were following me all the time even using disguises to fool me when in fact it was a completely different group of people. I kind of knew it was silly nevertheless but it felt real on another level. I wish I’d kept a diary of what happened but I don’t suppose I could have managed to keep one either mentally or physically - my handwriting became dire. I think I must have been on my way out with that level of symptomatic dysfunction. I don’t know if they did antibody tests at the height of it they are the only two tests I don’t have print out of. They did do them under the care of the endo but I didn’t really understand them of course back then. It was not discussed with me anything about the antibodies as far as I can remember. I should ask for those results but not sure if GP would have them one claimed there were no hospital results in my file or if the endo would keep them after all this time and be able to provide them to me. I got copies of the endo letters with all the other test results included after that. The endo knew it was not hashis and told me it was an unusual form perhaps he just based it on lack of a goitre but no one ever asked me about lumps in my neck, maybe they did test for antibodies in the first tests but I think it improbable.

[posthinking01]

Mine were 7000 at one time and I was told this was OK? Absolutely not it was OK

[SlowDragon Administrator in reply to posthinking01]

Medics completely ignore/fail to understand the autoimmune aspect of thyroid disease

Which antibodies are high …TPO or TG….or both?

[posthinking01 in reply to SlowDragon]

I know disgraceful really.

[TSH110 in reply to posthinking01]

Gulp!

[TSH110]

I have this one and same as you apparently my thyroid or what’s left of it is very small, shrivelled and unlikely to have any function whatsoever. tattybogle has linked to the excellent, relevant blogs of Dr Tania Smith who also had this less common thyroid disorder. She has given the most detail about it that I have seen. The articles can be quite a tough read but it is well worth it and slowly the pieces of the puzzle start to fit in place. It can be referred to as Graves hypothyrodism as it is actually more closely related to Graves than Hashimotos by nature of the antibodies involved. It gets very little mention and you’re just lumped in with those with hashis but there are some interesting differences. My latest problem is with my eyes. Thyroid eye disease is more common with AAT. I was sure I had it before diagnosis of hypothyroidism (consultant did say it was AAT and more unusual) but it was never diagnosed. Now 10 years on I have got problems with my eyes again which the optician can’t get to the bottom of and I understand that thyroid eye disease can happen long after the thyroid has shrivelled to a non functioning crisp with AAT. It’s important to know these things but hopefully they won’t occur in your case. I think one of the reasons I had trouble getting any diagnosis was because I was as thin as a rake so didn’t fit the “hypothyroid” medical assumptions.

[posthinking01 in reply to TSH110]

Thanks for this very helpful !

[SlowDragon Administrator in reply to TSH110]

Interesting about eye issue

Yes….long ongoing problems with dry, gritty, sore eyes.

My last optician appointment…..he said dry/sore eyes was inevitable as my eye lids can’t shut completely

[TSH110 in reply to SlowDragon]

That’s definitely thyroid eye disease then. My corneas are a swollen mess and my eyes are allpuffy. I’ve been told to take antihistamines. Not sure if they would alleviate TED. I am going for an eye test soon and hoping I get a different person so I can discuss it with someone with a more open mind. I suppose if I get the same one I should talk to him about it and ask him if they can arrange a Graves antibody test. Did wonder if going to the doc might be better tho.

[ling in reply to TSH110]

Has your vision been affected?

[TSH110 in reply to ling]

It seems to be ok. Before I was treated I got double vision, blurring and my colour vision was very poor everything was like it was in twilight. It recovered after treatment. I got a ptosis after 8 months on Levothyroxine but it was never determined what caused it. I was tested for myasthenia gravis I had no antibodies for it, some signs but nothing conclusive. I don’t think I can have it because I don’t have any symptoms at all that would lead me to think it was MG. I think my vision is but as good as it was my eyes hurt when I move them especially to their limits but I am not really aware of any other problems. I don’t think the cornea is quite swollen enough to interfere with the iris except with the eyes looking right ti the sides but it hurts enough forme not to do it! All around my eyes are puffy.

[guysgrams]

I believe I have this also. Diagnosed with hypo at age 45 but no antibody tests were done and at the time my TSH was 57. Fast forward to current time and my thyroid is now in atrophy stage and about half the size it was when the first ultrasound was done in the late 1990's, didn't have any ultrasounds of thyroid again until well after 2010 and now get them every couple of years and it keeps shrinking. My TPO antibodies now down to 12 from 517 as recorded in 2015.

[posthinking01 in reply to guysgrams]

Hi welcome to the club !

😀 Thanks for the info it all helps to know I am not alone ! Mine now 54 down from 7,000 then 700 then 1039 after Sepsis (twice!) Need to get to see Endo to see where we go now.