Atrophic thyroiditis

[Jaybrooke]

Has anyone been diagnosed with this ? I recently asked for my medical records, looking up report on my ultrasound from 10 years ago , I have had thyroid problems for 26 years, I read, patients gland small atrophic isthmus. . I researched this and states atrophic thyroiditis similar to hashimotos but more like graves desease or words to that effect. I was diagnosed with hashimotos after ultrasound just questioning this now as my symptoms a mix of hypothyroidism and hyperthyroidism. Inner tremors, palpitations, thudding heart, pain in throat neck jaw ear teeth, difficulty swallowing, pain in joints and muscles , numbness in legs and feet, lack of concentration, wooziness, hair loss, foggy brain, extreme fatigue. Levothyroxine did help to a degree but I was still very unwell now take a natural dessicated thyroid , thyrogold which has made a big difference to my life, I still get flares when I have some symptoms but as they only last 2/3 days I can easily put up with after years of struggling.

[Star13]

Hi - After a recent scan I’ve been told I have it. I always thought I had Hashimotos as I had positive antibodies but mostly TgAb, which apparently is common with those who have Atrophic Thyroidits.

As this is still quite new to me I’m still learning even though I was diagnosed 31 years ago. I also have the DIO2 gene and therefore am on combination therapy. I tried NDT but couldn’t get on with it and again I’ve heard that’s common with AAT.

It sounds like you have or are suffering from autoimmune attacks which are causing you to swing from being hypo to hyper and back.

Are you under the care of an Endocrinologist?

[Jaybrooke in reply to Star13]

I’ve never heard of atrophic thyroiditis until now. My thyroid blood tests always came back normal from 1995 onwards so I was told nothing wrong with my thyroid , even tho I had all these awful symptoms , so never allowed any meds for years eventually I went private and was prescribed thyroxine which helped to a degree which was a relief but I was still very unwell . Mine like many is a long story ,I lost faith in doctors and endocrinologists no help at all so after 19 years I decided to self medicate, I chose thyrogold after a lot of research, amazing the difference it made most symptoms disappeared or lessened . As I mentioned I still have frequent flares but can cope as I know thy are temporary. From the little I’ve read about atrophic thyroiditis so far ,only treated for hypothyroidism. As your knew to it has your doctor suggested anything different ??

[Star13 in reply to Jaybrooke]

I’m sitting on the information at the moment. I’ve been waiting for a year for a referral to a NHS Endo. One who is well respected on here and who I’ve seen before . I’m not bothered it’s taking so long as my GP prescribes my T3 now. For me it just explains so much of what I’ve been through. It also validates it as instead of people looking at you and thinking that symptoms are all in your head you can actually show them proof that they are not if need be!

[humanbean]

You might find this link of interest - it has several mentions of atrophic thyroiditis :

thyroidpatients.ca/2021/12/...

And this is a bibliography of references to atrophic thyroiditis :

thyroidpatients.ca/2018/12/...

[Jaybrooke in reply to humanbean]

Thankyou for information I will read through it

[Sunflower64]

Yes. I was diagnosed with Hashimoto’s in 1999 based on elevated anti-TPO and anti-Tg, low free T4 and high TSH. An ultrasound showed thyroid of normal size. I was put on levo and struggled even on 200 mcg daily. It took over a decade for a doctor to find out my FT3 was low. I was put on Novothyral (I was living in Germany back then), but the T3 in it proved too much for me. My body could not handle it. So I self-medicated with Thyroid-S. The T3 in TS felt much softer and I did great on from 2014-19. I lost a lot weight and felt good for the first time in years. I was symptom-free for years on Thyroid-S. In mid-2019, TS suddenly felt unstable and unpredictable. Strange symptoms of both hypo and hyper appeared and have not resolved since.

I have since tried to find the right treatment for me. In late 2021, my anti-TPO and anti-Tg dropped in range and my doctor at the time wanted a new ultrasound. The volyme of my thyroid gland was 4.5 ml (less than 5 ml = Atrophic). However, the doctor said it would not affect treatment in any way; he just wanted the ultrasound to make sure I did not have any nodules or lumps.

I recently read an article by Paul Robinson who summarised an article by Tania S. Smith. It says that atrophic thyroiditis is not the same disease as Hashiomoto as other antibodies are present. Well, I had high antibodies-tpo and anti-Tg and a normal-sized thyroid at the time of diagnosis but, 20 years later, it was atrophic. I was never tested for any other type of antibodies.

Paul/Tania say that people with atrophic thyroiditis need T3 rather than T4 as they have thyroid-blocking antibodies and cannot convert T4 to T3 in their thyroids. But, I did great on NDT for years. Lately, it has been a challenge finding the right T3/T4 ratio and the right kind of treatment, but I am not (yet) fully convinced that T3 only would be the best solution for me.

I have to admit I do not fully understand Paul/Tania’s reasoning: you have either Hashimotos or atrophic thyroiditis, but about 10 % of patients have both anti-Tpo and anti-Tg as well as thyroid blocking antibodies, but treatment is different as Hashimotos patients still have a thyroid so do not lose as much T4 to T3 conversion…?!

Paul/Tania’s article is the first one I have read that makes a distinction between the two conditions, and advocates different treatment (NDT/combo for Hashimotos and T3 only for Atrophic Thyroiditis…).

I have updated this post to include Paul’s article which contains a link to Tania’s article:

paulrobinsonthyroid.com/cou...

[Star13 in reply to Sunflower64]

I find what you say interesting. I was diagnosed back in 1993 with “hypothyroidism”, then in 2003 told I had Hashimotos as they tested my antibodies. At no time did anyone do a scan.

I’ve struggled with symptoms continually on T4 until about 8 years ago a Consultant suggested NDT. I did not do well on it and eventually after around two years it was swapped to combination T4/T3 with liquid T4 and Thybon Henning T3. It’s been the best I’ve been but still not right. Last year I got my own scan done which shows my thyroid is Atrophic.

Given what Paul Robinson says I take 40mcgs of T3 and my FT3 is 6.3 which is almost the top of the range. I take 100mcg of T4 but my FT4 is only 12.8 which is fairly close to the bottom of the range. I know I could not take anymore T3 because I start to get over medicated symptoms and if I try to drop the T4 I get hypo symptoms so I seem to be stuck where I am dose wise. TSH is deficient at 0.02 and has been for many years. Vitamins are all good.

Therefore I don’t seem to fit in any box for Atrophic Thyroiditis!

[Sunflower64]

I think one problem is trying to fit anyone into a box as treatment is so individual…I have a colleague who had a TT in 2005. So no thyroid to produce T3 or convert T4 to T3. Yet, she feels good on 125 mcg of levo daily. She never put on any weight and have no hypo symptoms, whereas I struggled to feel human on 200 mcg of levo while still having a thyroid. I sometimes wonder if the inflammatory process in autoimmune hypothyroidism messes with T4 to T3 conversion. It seems inflammation increases T4 to rT3 conversion, leaving prople on levo with too little FT3. And NDT is mostly T4 so could potentially make this worse. I saw a concrete example: someone needs 45 mcg of T3 daily. She only gets 27 from 3 grains of NDT. There is also 114 mcg of T4 in 3 grains of NDT, but it converts mostly to rT3. End result: FT3 deficiency. So, the answer would be to add T3, or go up to 5 grains of NDT.

In your case, it would be tempting to suggest a little more T4, but that could convert to more T3…it seems T3 tends to lower T4. It certainly did for me! I am not sure how some people manage to get their FT4 midrange on NDT, or both FT3 and FT4 75% through the range…