Sjögren's syndrome: a potential new aetiology o... - Thyroid UK

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Sjögren's syndrome: a potential new aetiology of mild cobalamin deficiency

helvella profile image
helvellaAdministratorThyroid UK
13 Replies

This paper identifies the possibility of Sjögren's syndrome affecting ability to absorb vitamin B12. It is about twenty years old but I don't remember the issue being mentioned.

Sjögren's syndrome: a potential new aetiology of mild cobalamin deficiency

academic.oup.com/rheumatolo...

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helvella
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shaws profile image
shawsAdministrator

My sister had Sjögren's syndrome as well as rheumatoid arthritis - as does my daugher - so I will mention the possibility of not absorbing B12 and to have it checked. Thank you.

helvella profile image
helvellaAdministratorThyroid UK in reply to shaws

Hope they are OK - but better to be aware than not.

shaws profile image
shawsAdministrator in reply to helvella

It's amazing how memories are 'jogged'.

My sister was not taking B12.

She had been diagnosed with R.A. in her early 30's. and was eventually seriously disabled.

Later in life her speech began to be be troublesome that's when she began B12 supplements. About six months later her speech was very much improved and my cousin can certainly confirm this.

Unfortunately her B12 was stopped and some months later she died.

helvella profile image
helvellaAdministratorThyroid UK in reply to shaws

So sorry - that’s awful.

shaws profile image
shawsAdministrator in reply to shaws

Her husband stopped the B12!

JGBH profile image
JGBH in reply to shaws

That is dreadful, so sorry.

JGBH profile image
JGBH

Thanks for this article. I have Sjogren’s and RA plus hypothyroidism plus…. and am B12 deficient and self inject B12. That’s interesting to know. Was not aware of the correlation.

Very interesting. I have both and systemic sclerosis and was aware that there might be an issue with absorption. I started taking Jarrow B12 nightly and one major difference I’ve noticed is that I am no longer plagued by gnawing gastritis although I do have a paralysed gut. I take it every night sublingually when I go to sleep.

Starmen profile image
Starmen

Thank you for this I also have Sjogrens syndrome and rheumatoid arthritis and my recent blood tests showed low B12 .

helvella profile image
helvellaAdministratorThyroid UK

The NHS pages on Sjögren's include:

Other problems

Other conditions that have been linked to Sjögren's syndrome include:

peripheral neuropathy – a condition that causes loss of feeling in the hands and feet

nhs.uk/conditions/sjogrens-...

If you follow that, you could (eventually) end up here on the Peripheral neuropathy pages:

Other causes

As well as diabetes, there are many other possible causes of peripheral neuropathy.

Health conditions

Some of the health conditions that can cause peripheral neuropathy include:

low levels of vitamin B12 or other vitamins

nhs.uk/conditions/periphera...

But no obvious link back to the low B12 being caused by Sjögren's syndrome.

Still, if you have Sjögren's syndrome and need or want to talk about the connection, that does at least make it possible to point at NHS pages which should help with convincing UK doctors.

in reply to helvella

Sadly it doesn’t work like that anymore than it does with Hashimoto’s. Doctors are led by blood tests and B12 blood tests in U.K don’t always show cellular absorption issues. The neuropathy is viewed as Sjögren’s affecting the small nerve and ganglion nerve fibres via the parasympathetic and wider autonomic nervous system similar to diabetes.

helvella profile image
helvellaAdministratorThyroid UK in reply to

I know - but it is at least a twig to cling onto.

in reply to helvella

Lol - twigs just snap for most of us so we Sjögren’s people learn to find our own ways rather than cling!

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