Ords disease

[TRbo]

Hi, I was diagnosed several years ago with Ords disease, thyroid had disintegrated after years of feeling unwell and no energy, felt I was dying. Have taken NDT since but cannot get the tablets anymore so trying metavive 11, anyone in a similar situation and have you had success with these new tablets , thanks

[Lalatoot]

Think folks might respond if we say that Ords is autoimmune thyroiditis aka hashimotos.

[TRbo in reply to Lalatoot]

I was tested for Hashimotos but didn’t have it, in fact my doctor tested me for everything. Over 30 years of bouts of fatigue and as time went on pain and weakness especially in the muscles, joints to the point where I could no longer function and my daughter and family moved into our house to care for my husband and myself. Every test for my thyroid came back perfect even the one just before I saw the endocrinologist who tested me for antibodies and was amazed to find I no longer had a thyroid and only for the fact that after much research I started taking ndt myself she said I would be dead. She couldn’t say why except it could be autoimmune but shock or stress could have caused it too,

[Churchlady4044 in reply to Lalatoot]

I don't think they are the same. They have different antibodies and with Ord's you can shit between hyper and hypo states. An unltrasound will tell you if you have Ord's - you won't have much or any thyroid tissue.

[Lalatoot in reply to Churchlady4044]

With hashimotos you can also shift between hypo and hyper. With hashimotos a goitre is more common; Ords there tends not to be a goitre. Both are hypo; both are where the autoimmune system attacks the thyroid.

[tattybogle in reply to Churchlady4044]

you might find some of these links re. Ord's interesting, in my reply on this post healthunlocked.com/thyroidu... and this one healthunlocked.com/thyroidu... .... a study which actually mention Ord's... twice !

[Churchlady4044 in reply to tattybogle]

Thank you. this is very helpful.

[tattybogle]

Haven't tried metavive so can't help with that , but it's nice to hear someone was actually diagnosed with Ord's disease. you must be in a minority to have found a doctor that had even heard of the term.

For those that don't know it basically means the same as hashimoto's (ie autoimmune thyroid destruction) but without ever getting a goitre.

As far as i know it's actually more common in the western world than Hashimoto's is , but for some reason everyone has forgotten about Mr Ord.

[Buddy195 Administrator in reply to tattybogle]

I never knew that- thanks for the info Lalatoot & tattybogle 👍

[TRbo in reply to tattybogle]

Would like to know if anyone has had good success with metavive 11

[tattybogle in reply to TRbo]

There have been quite a lot of posts on metavive , for example this one healthunlocked.com/thyroidu...

also , if you type metavive into the "Search HealthUnlocked" box at top of page and click on ThyroidUK posts on the right hand side, you will find many more .

There are some people who do fine on it , and some who don't . there has also been a recent change to formulation which seems to have upset some people , but not others.

[TRbo in reply to tattybogle]

Thank you for your help, will check it out x

[Churchlady4044 in reply to tattybogle]

I've read scientific assessments from Canada, UK, S. Korea, Spain - and all say it's NOT the same as Hashimoto's. There are different antibodies present in each. It's not common in the US, and the research is very limited in the US about it. It needs to be treated differently as well, but I'm having some trouble pinning down how.

[helvella Administrator Thyroid UK in reply to Churchlady4044]

Could you tell us which antibodies are present in Hashimoto's and which in Ord's?

Some historical documents suggest that a substantial issue is that Ord's in more prevalent in northern Europe (likely those with a genetic inheritance from there rather than a location issue) - pretty much Scandinavian, UK, Ireland.

[tattybogle in reply to Churchlady4044]

i agree .. it's not 'the same' as hashimoto's .. i meant 'basically the same' as in 'basically the same problem' ..ie. autoimune thyroid destruction.(I'm sure you've already read some of the following references .. I'm just posting them all together again for the benefit of future readers )

I don't think it's the case that 'the treatment is different' .... all still require the same treatment of Thyroid Hormone Replacement/ Monitoring ,and at present there is no treatment for any type of antibody.... but they need to be 'understood' differently.

it is very hard to find clear definitions of the differences , between:

~ HASHIMOTO'S WITH A GOITRE.... may or may not have TPOab, and no one ever looks for TRab.

~ AUTOIMMUNE HYPOTHYROIDISM that DIDN'T HAVE GOITRE .... so no one did a scan of the thyroid to see if it has actually shrunk or was just showing evidence of damage , but not shrunken . may or may not have TPOab , but again no one ever looks for TRab.

~ ORD'S . .... 'discovered' so long ago in 1890's( ?) so it's hard to know much detail about what exactly Ord was looking at .. other than that he didn't find a goitre. Presumably they couldn't test antibodies back then.

~ AUTOIMMUNE ATROPHIC THYROIDITIS where the thyroid has shrunk ... May or may not have TPOab, and there are probably TRab present (not the 'Stimulating' type of TRab responsible for Graves , , but the 'Blocking' type) These cases often seem to have a VERY high TSH at diagnosis, probably as a result of the blocking TRab. which are possibly also responsible for apparent swing's between Hypo / Hyper/ Remission states in some people. Tania smith from "thyroid patients.Canada" believes she has this .

I agree with Tania S Smith .... I think it's not a case of 3 (or 4) different diseases,, but it's a case of 'a spectrum of antibodies' TPOab / TRab (stimulating) /TRab (blocking) ..... which are present in different proportions at different times, the levels of which fluctuate over time .

I also think ..... due to the lack of routine ultrasound scans for 'hypothyroidism without goitre' / the lack of TRab testing in hypothyroidism / the difficulties in measuring the blocking form of TRab in isolation from the stimulating form ..... that the full explanation of the various different presentations of Autoimmune Hypothyroidism is very far from 'understood' .. and is likely to remain that way.

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

thyroidpatients.ca/2020/04/... Overlooked: How many Hashimoto’s patients with TSH-Receptor antibodies?

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

thyroidpatients.ca/2020/04/... Remissions and fluctuations in autoimmune thyroid disease: TRAb

ncbi.nlm.nih.gov/pmc/articl... Thyroid Autoimmunity: Role of Anti-thyroid Antibodies in Thyroid and Extra-Thyroidal Diseases

"Hashimoto’s thyroiditis (HT).... There are different variants of HT, termed fibrous, fibrous atrophic (Ord’s disease), or goitrous forms, and IgG4 thyroiditis (88).

Based on debates that Riedel thyroiditis is not primarily a thyroid disease but rather a manifestation of the systemic disorder multifocal fibrosclerosis, this variant is no longer classified as a variant of HT.

Conversely, IgG4-related thyroiditis is now recognized as new entity of AITD (89). IgG4-related thyroiditis is associated with more frequent subclinical hypothyroidism and with higher levels of thyroid autoantibodies compared to the non-IgG4 thyroiditis group. In contrast to the other AITD forms there is a male preponderance (90). In long course of HT mainly IgG4 autoantibodies are produced (91), which trigger the development of IgG4-related disease (IgG4-RD). IgG4-RD can affect a variety of tissues (pancreas, skin, salivary glands, lacrimal glands, etc.), and the hallmarks are lymphoplasmacytic infiltrations with predominance of IgG4-positive plasma cells and fibrosis in the affected tissue.

The atrophic form is more common than HT with enlargement of the thyroid gland (92). Although both forms lead to hypothyroidism, they have been reported as distinct diseases, differing in immunological background (associated with different HLA alleles), involvement of autoantibodies, and type of immune response (humoral versus cellular).

The hypothesis that Ord’s disease was the end stage of HT could not be confirmed in follow-up studies (93). Thyroid autoantibody levels differ between goitrous and atrophic thyroiditis in that inhibitory TSHR antibodies are higher in Ord’s thyroiditis. These antibodies block cAMP production as well as TSH-induced DNA synthesis and iodide uptake . "

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

[CarolineAnne]

I have Autoimmune Hypothyroidism and mentioned to my Endocrinologist that I had Hashis. He told me that I didn’t and that I had Ords. He showed me my scans and explained that it is still an auto immune attack but the thyroid atrophies rather than develops a goitre. I still refer to having Hashis on forums as that is what people understand to be the autoimmune attack type of hypothyroidism. I didn’t tolerate Levothyroxine at all despite trying for many years. I am now prescribed Liothyronine ( T3)

[TRbo in reply to CarolineAnne]

Thanks, that’s so interesting, will do more research. How do you find the T3? Also do you take an Adrenal tablet?

[CarolineAnne in reply to TRbo]

Sorry for the delay in reply. The T3 was working well and I felt good on it but since December I have gone downhill and trying to find out why.

[TRbo in reply to CarolineAnne]

Also is your throat sore and often feels blocked x

[CarolineAnne in reply to TRbo]

No but my partner tells me my thyroid cough has come back recently. I feel congested like catarrh when you have a cold. Always wanting to clear my throat.

[wavedancers]

I was today years old when I found out about Ord's and I have thought for almost 30 years that I had Hashimoto's. I don't have a goiter and my throat is always "apparent" as in feeling a bit tight, clearing throat consistently, etc. Guess a scan is in order...

[TRbo in reply to wavedancers]

I too have Ords, I don’t have any thyroid gland at all, they think it disintegrated over time. Since changing my NDT I have felt much better, and don’t have the discomfort in my throat anymore. At the moment I am suffering extreme fatigue as I have a mass on my ovary and am awaiting an operation, the doctor thinks it’s causing the fatigue.