Sjogrens

[morehead]

I think I have Sjogrens after my RAI treatment for thyroid cancer.

[EDSerinDevon]

Hey am about to have an ultrasound for SS - have you had it confirmed?

It's a systemic autoimmune condition but sometimes the ssb-a, ssb-a and high tieter ANA results come back normal hence the need to yest by ultrasound or biospy apparently. If you don't mind me asking why do you think your thyroid has influenced this? I just dd Genova testing and think I may have hypothyroid issues but I also have dysautonomia - POTS, the latter by the way is linked i.e Sjogrens is the second most common cause of autonomic ganglionapathy or something but they sometimes find anti thyroid globulins too.....am not really clear but am conviced there is a link?

[morehead in reply to EDSerinDevon]

I had thyroid cancer and had my thyroid removed and they treated me with Radio Active Iodine. This treatment has a side effect of Sjogren.

[morehead in reply to EDSerinDevon]

They gave me an ultrasound on my neck.

[EDSerinDevon in reply to morehead]

Yep am having that on 23rd! I think a. Hypothyroid too but Google SS Sjogrens Steven Vernino MD in US. His work is on Dysautonomia international site

[pennyannie]

I was referred for Sjogren Sydrome at the suggestion of my dentist - my doctor knew nothing of this autoimmune disease. There is a SS website and charity - I joined as my symptoms matched the profile. My lip biopsy came back negative but the hospital found low ferritin ( 22 ) -

I am with Graves Disease and post RAI some 12 years.

I read on the McMillan cancer care website, possibly symptoms after head and neck cancer treatment.

These symptoms are what I was living with, but 8 years after my actual RAI treatment.

However " sicca syndrome similar to Sjogrens Syndrome may occur in Graves patients

following RAI ablation " -

extract from Elaine Moore's book, Graves Disease A Practical Guide:

So to put it simply, if the tests come back negative, it could be a consequence of RAI -

This is my humble opinion, I'm on my learning curve, as I have had no help at all from the Nhs.

It might also be prudent to get your vitamins and minerals checked out, along with a full thyroid panel, RAI goes through your whole body - it 's toxic.

Take good care

[morehead in reply to pennyannie]

Thank you. I am going to get my teeth cleaned I am really worried about that.

[pennyannie in reply to morehead]

Oh I'm sorry that wasn't my intention.

On a different note a fully functioning thyroid would give you approximately

100 T4 and 10 T3 daily.

I think it logical therefore, that all patients who have had a medical procedure resulting in them loosing their thyroid function should be offered both these vital hormones as

standard treatment. Surely that should be a given, shouldn't it ?

I have no medical knowledge, and am on my own learning curve, through this excellent forum and am now self medicating with NDT -

Having read your past posts, it's still early days in your recovery. You have gone through so much, and I hope you'll find some comfort once all the chemicals are out of your system.

If your diagnosis for SS is positive, there is a very comprehensive website and prescription medicine available to alleviate symptoms.

Take good care -

[Poniesrfun]

Salivary gland damage is a known side effect of RAI following surgery. A small study showed that taking a selenium supplement during treatment could lessen or el I ate the damage.

inspire.com/m/DesertHorses/...

It would be nice if patients were informed of this before treatment instead of finding out after when problems crop up.

[morehead in reply to Poniesrfun]

what can be done now.

[Poniesrfun]

Dry mouth following RAI is not the same thing as Sjogrens syndrome, which is an autoimmune condition. The salivary gland damage may be transient - sometimes an ENT, dentist or speech therapist can help with unplugging a blocked gland - or it may be permanent. I don't know what's available in the UK; in the US there are over the counter sprays and moutwashes which can help, plus some prescription meds which can help with saliva production (don't know if these are also used for SS). Some people report chewing gum which has xylitol (an artificial sweetener which can be toxic to dogs and cats but fine for humans) helps.

Medical people tend to underestimate how distressing this can be.

Patti in AZ

[morehead in reply to Poniesrfun]

Thank you. I