Dermatopolymyositis and Hashimotos.

[Aesm]

Good morning all. I am really struggling healthwise at the moment and was diagnosed with Hashimotos last year and have now had a recent diagnosis of dermatopolymyositis...specifically dermatomyositis. .....I know it is a rare disease, but wondering if there is anyone else on this forum who may have experience of living with the two disease together. I have an array of symptoms and am still having numerous test and biopsies. I am lucky that I have had a great rheumatologist (in Italy) and have been diagnosed , as it can often be years for this to be diagnosed.... but I’m feeling rather unwell and a little alone on this journey.

[SlowDragon Administrator]

Your previous post shows below range FT3

healthunlocked.com/thyroidu...

Have you had dose increase in Levothyroxine?

Vitamin D, folate, ferritin and B12 need testing too

Hashimoto's frequently affects the gut and leads to low stomach acid and then often low vitamin levels

Low vitamin levels affect Thyroid hormone

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

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

Are you on strictly gluten free diet?

If not....While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet




(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)




Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

Dermatopolymytosis associated with coeliac

ncbi.nlm.nih.gov/pmc/articl...

[Aesm in reply to SlowDragon]

Thank you Slow dragon that article is especially helpful. I have a gastroscopy booked for early January to check for malignancy that may be associated with the DM diagnosis and some symptoms I have. I have tried gluten free , but not strictly, but I will follow the advice to have the blood tests before undertaking the diet now. Unfortunately, the endocrinologist that I have seen here in Italy, seems to be of the same ilk as many of the ones discussed on this forum, and actually wants to reduce my levothyroxine, I had quite a long discussion with her, and she has moderated her initial thoughts but has insisted that although I continue on 100mcg six days a week, I reduce the seventh day to only 50mcg, as she says that my TSH suggests I am hyper Rubbish, I know from this forum,....... I am continuing to take the 100mcg every day. My next appointment with her is in December, so I will need to discuss the implications of having DM too. She has only asked for TSH and free T4 blood test for the next visit, not Free T3, but I will ask my own GP for all, and am pretty certain she will be ok with this. I do feel a bit overwhelmed as I have also had a PET scan which has shown breast and lymph node metabolic activity consistent with malignancy so will be having further tests and biopsy soon, plus an array of other tests. Thank you again for your kind advice.

[SlowDragon Administrator in reply to Aesm]

Essential to test vitamin D, folate, ferritin and B12

Can you get these tested privately?

Would suspect some are very low

Your conversion of FT4 to FT3 is poor, common with low vitamin levels and gluten intolerance

Before endoscopy to diagnose gluten intolerance or coeliac you need to eat high levels of gluten for minimum of 6 weeks before

[Aesm in reply to SlowDragon]

I think my doctor will give me a prescription for the vitamin D, folate, B12 and ferritin tests without too much trouble. As for the gluten.....I guess I’ll have to eat a lot of pasta then....not difficult in Italy.... I am having trouble swallowing bread though. Are then any specific tests for FT4 to FT3 conversion. thank you Slow Dragon.

[SlowDragon Administrator in reply to Aesm]

I understand from Coeliac websites that once you are on gluten free diet, Italy is very accommodating

In part because ALL schoolchildren are tested for coeliac, therefore there's a higher number of coeliacs diagnosed in Italy

Useful travel cards

celiactravel.com/cards/ital...

[SlowDragon Administrator in reply to Aesm]

January a long time to wait for endoscopy. You could just go strictly gluten free now.