Diffuse idiopathic Skeletal Hyperostosis - Thyroid UK

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Diffuse idiopathic Skeletal Hyperostosis

JANJAN2 profile image
10 Replies

I'm wondering if anyone on here knows anything about this form of arthritis which affects ligaments and tendons where they are attached to bones. I have just been diagnosed with this in my thoracic and lumbar spine.I have two knee replacements.

I was diagnosed with hashimotos at the age of 44, having been ill since my teens. I have the D102 genetic anomaly and I have been on Armour thyroid for 21 years and feel well on that. I do have a suppressed TSH, but that is the only way I can feel well. My calcium tests have always been normal.I understand the disease concerns the build up of calcium salts.

I can't see my osteopathic surgeon until December.I have seen my osteopath who said DISH is a metabolic bone disease. Does anyone know if this could be caused by long term undiagnosed Hashimotos and lack of T3 for years? I am very worried that it may be something to do with calcitonin in Armour thyroid.But that I believe regulates calcium levels. I have read on the internet that there is no known cause for DISH.

I thought I would post this in case someone knows about this form of arthritis and if there is a connection to hypothyroidism.It may be rare-I don't know. All I know is-it is very painful!

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SlowDragon profile image
SlowDragonAdministrator

Has hypo parathyroidism been ruled out?

ncbi.nlm.nih.gov/pubmed/200...

healthline.com/health/hypop...

What vitamin supplements do you normally take?

JANJAN2 profile image
JANJAN2 in reply toSlowDragon

Thank you for posting those links. Very interesting! It looks like I will need to have some tests done! I also do have tingling lips. My calcium levels have been normal in the past though.

I do not supplement with anything, but have in the past. It looks like i will need to look into taking vitamin D, magnesium and calcium. Thank you again.

SlowDragon profile image
SlowDragonAdministrator in reply toJANJAN2

Suggest you push GP to test parathyroid, vitamin D and calcium together

It's very difficult to get parathyroid test privately.....as it's a time dependent test

Good app - costs a couple of quid

calciumpro.com

Put your results in the app it evaluates results

Low magnesium is common hypothyroid problem especially if you have low vitamin D

Do you have Hashimoto's (autoimmune thyroid disease) diagnosed by high thyroid antibodies?

Low vitamin D is extremely common when hypothyroid

Hypoparathyroidism

parathyroid.com/hypoparathy...

Acquired due to Hypomagnesemia

The element magnesium is closely related to the action of calcium in the body. When magnesium levels are too low, calcium levels may also fall. It appears that magnesium is important for parathyroid cells to make PTH normally. Once recognized, this is usually very easy to fix. Chronic alcoholism is a frequent cause of low calcium and magnesium levels which can lead to secretion of Biologically Inactive Parathyroid Hormone.

labtestsonline.org.uk/tests...

I spent a long time looking into parathyroid issues .....turned out I had low magnesium due to combination of longstanding untreated vitamin D deficiency and was also stuck on beta-blocker...propranolol for almost 20 years (apparently propranolol lowers magnesium as you can see on this web link) ...more on my profile

I couldn't tolerate vitamin D supplements until improving magnesium levels first

SlowDragon profile image
SlowDragonAdministrator in reply toJANJAN2

Usually we only need magnesium and vitamin D.

Improving vitamin D will naturally raise calcium levels

You will see hundreds of posts on here about magnesium

GP will only prescribe to bring vitamin D up to 50nmol.

Aiming to improve vitamin D by self supplementing to at least 80nmol and around 100nmol may be better .

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Ideally retest twice yearly via vitamindtest.org.uk

Vitamin D mouth spray by Better You is good as avoids poor gut function.

It's trial and error what dose each person needs. Frequently with Hashimoto's we need higher dose than average

Local CCG guidelines

clinox.info/clinical-suppor...

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Magnesium

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

JANJAN2 profile image
JANJAN2 in reply toSlowDragon

Thank you very much for this information.I had very high thyroid antibodies, which is why Hashimotos was diagnosed. My last blood test in June showed normal antibodies for the first time.

I had my calcium, vitamin D and magnesium levels checked at the hospital two years ago and the results were 'unremarkable'.I remember that my vitamin D level was 59 and I did supplement with vitamin D at the time, but I haven't taken it recently.

I will supplement with vitamins as soon as I can buy them and will talk about this with the doctor when I see her in three weeks' time. Your post has given me questions that I can ask her.

Thank you again!

SlowDragon profile image
SlowDragonAdministrator in reply toJANJAN2

With Hashimoto's most people find vitamin D needs to be optimal....at least around 80nmol and around 100nmol may be better

ncbi.nlm.nih.gov/pubmed/286...

Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.

endocrine-abstracts.org/ea/...

Evidence of a link between increased level of antithyroid antibodies in hypothyroid patients with HT and 25OHD3 deficiency may suggest that this group is particularly prone to the vitamin D deficiency and can benefit from its alignment.

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

Our results indicated that patients with hypothyroidism suffered from hypovitaminosis D with hypocalcaemia that is significantly associated with the degree and severity of the hypothyroidism. That encourages the advisability of vit D supplementation and recommends the screening for Vitamin D deficiency and serum calcium levels for all hypothyroid patients.

Standard testing magnesium is only available here in Uk, ...it always comes back within range

But if you can get vitamin D, calcium and PTH tested it might be helpful

Many many Hashimoto's patients find supplementing magnesium is beneficial

Presumably as you have Hashimoto's you are on strictly gluten free diet?

SlowDragon profile image
SlowDragonAdministrator

Are you still managing to get Armour prescription?

JANJAN2 profile image
JANJAN2 in reply toSlowDragon

Yes, I have been strictly gluten free for many many years. My son is a coeliac.

I get my armour prescription privately-not on the NHS anymore, like everyone else!

SlowDragon profile image
SlowDragonAdministrator in reply toJANJAN2

So you are likely coeliac too (just that test is unreliable)

Gluten free diet is low in magnesium

theceliacmd.com/articles/ma...

JANJAN2 profile image
JANJAN2 in reply toSlowDragon

My husband is coeliac and yes, I probably am as well. I didn't know that gluten free diet is low in magnesium-I will tell the others!

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