Hi could anyone tell me what I should call my illness . Hard to just give people an answer otherwise if they ask what is wrong with me .
I have a history of high tsh low t4 so was put on thyroxine . But it didnt raise my t3 into range so I was told I dont convert thyroxine to t3 . So I am now on liothyronine only .
So how do I shorten that into a title ! ? Is it I have " t3 non converter ords / hashimoto's/ auto immune disease " ?
Then second part of diagnosis title is what ?? Ords or hashimoto's or just auto immune thyroiditis ?
I have had ultrasound showing atrophy , giraffe like pattern on my thyroid gland .
I have highly elevated antibodies.
I read that hashimoto's has an extra element of protein deposits or something that I have not had diagnosed . Also that it can be American term misused here for signs and symptoms I have .so my consultants said I am not hashimoto's.
I read ords disease would perhaps suit my signs ; USS result , elevated antibodies low tsh . But it never seems to be mentioned on this forum . So I am wondering if not the right title.
Therefore do I just say auto immune thyroiditis .
I hope this doesnt sound trivial as what's in a name ?
It's really because people ask and I feel they dont beleive you are ill because some hypothyroid people luckily take thyroxine and feel well . So they compare . So it's even harder when you cant say a bonafide title to shut them up .without having to explain at length why you dont feel well . When they dont want to listen anyway . And you sound lame because without a medical term you have no credibility.
Thank you for your help as always .
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You are hypothyroid , and have autoimmune thyroid or Hashimoto’s disease. U.K. doctors prefer the first name, USA second. You have exactly the same problems, and trying the same solutions as me, I just call myself hypothyroid, do you really want to go into all the other problems involved? Incidentally if you have autoimmune antibodies have you tried going gluten, even dairy free, diet as many find it reduces the antibodies? Unlike you my antibodies now seem to be in control and low. I take supplements to make sure my thyroid health is optimum: folate, ferritin ( with vit C) , B12 (and B Complex) and vit D ( with vit K2) daily/regularly; plus 1-2 weekly Mg, zinc, selenium.... Optimal mins/ vits might improve your T4 to T3 conversion, and other symptoms associated with hypothyroidism but might be caused by low levels from tiredness, pain, hair loss etc etc...
There is a huge misunderstanding re autoimmune disease because the medical profession doesn't wholly recognise the destruction it is capable of causing. And why would you even want to explain the details of your illness to people who either don't want to listen or just wish to compare.
On this forum I refer to my condition as Hashimotos. To my doctor it is autoimmune thyroiditis. To the outside world it is hypothyroidism (cause I can't be bothered to explain the various forms or causes)..
Thankyou for your reply . Interesting to hear they are the same . My consultant says I am not hashimoto but am auto immune thyroiditis . I have not mentioned ords to her . She may hit the roof .
I am aware I am very lucky she is a t3 advocate . So i dont rock the boat .
When I had my scan, the ultrasound person said that the atrophy was the "end" of Hashimoto's. A bit of a clumsy way of saying it but I knew what he meant - the thyroid has been destroyed by the Hashi. I live in Australia, where it is Hashimoto's (short for Hashimoto's Thyroiditis) or just hypothyroidism. It doesn't come up very often, usually I just say I'm hypothyroid.
Ords is hashimotos? There is a difference... ords causes the thyroid gland to shrivel up but hashimotos makes for goiters and swelling.
However, modern endocrinologists, like to ridicule the term ords and just say auto immune thyroiditus. Doesnt really matter what they call it, they still arent treating it properly.
Although, each is diagnosed by the presence of the same thyroid antibodies resulting in the same gradual destruction of the follicles, and the same invasion of the thyroid tissue by leukocytes.
I believe in Ords the transient hyperthyroid state is not present but the various lymphatic nodes are swollen.
Mine were constantly swollen as a child but I also suffered huge thyroid levels swings. Maybe a combination of both .... Ordsimotos. 😂
Thank you Galathea for all your replies . Very knowledgable and helped a lot . Love the ordimotos 😂 . And poor treatment agree on . Add that to insult of we should feel well coz our blood results are in range .
I hope you are at your optimum health wise at moment .
With ord's/Hashimoto's/autoimmune (call it what you like) it's the same result......frequently we have very poor gut function, vitamin deficiencies and frequently gluten and/or dairy intolerance too
For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
If/when also on T3, make sure to take last dose 8-12 hours prior to test
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Ideally ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
Thank you so much for your reply . Some brilliant advice to look through . Thank you . I bought Isabella thyroid protocol book . And am now gf free for six years and df for nearly 2 years . Did the whole no caffeine or sugar soy etc for few months at time . I forget to to keep up my vitamins . So thank you for reminding me . I do notice I feel worse if have milk or caffeine . I hardly have sugar . So notice when I do I am groggier.
Hard to beleive though despite above that these things make a difference . As so many factors affect how I feel or function dont you think.
Just as an aside . I find its drinks that are the hardest to find that are nice and also good for you .
I also felt annoyed that the book didnt suggest simple meal alternatives . Everything was strange hard to make foods .
I mean what is wrong with scrambled egg for breakfast .
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Why is Hashimoto's not on my physio's list of auto-immune disorders? 
Not Hashimoto's?
post partum thyroiditis 
