Dry eyes, dry nose and fatigue but blood tests say not Sjogrens?

[Ctb567]

I'm a 19 year old female from the UK and have a family history of hypothyroidism and Coeliac disease. I have been tested for both and even had an endoscopy for coeliacs but both have come back negative. I also have dry skin and have had chronic constipation my whole life. The doctors have always said that my dry eyes are not that bad but they do feel pretty bad. They say I have mild blepharitis and my right eye is not producing enough tears but its not by a lot (though I only have the Schrimers test after I had punctal plugs put in my lower lids so I don't know how accurate it is).

Does anyone have any advice or know whether Sjogrens could still be a possibility? Right now I'm seeing an endocrinologist and an eye specialist and I'm not really getting anywhere at the moment...

[sazzyb]

Hi Carly, have you had a blood test for Sjogren's? The last time I looked only about 60% test positive for the A antibodies and about 30% for the B antibodies.

[Ctb567 in reply to sazzyb]

Hi Sazzyb, I've had the SSA, SSB, ANA and the rheumatoid factor and all were negative though I'm having the last 2 tested again

[willybilly]

Same problem.Very dry eyes(nil on Schirmer test)painful dry mouth, lost my teeth, fatigue, hyper thyroid

killed by R A I pill so now hypo, dry painful nose, dry skin, dry, dry everything. Docs and dentists, eye doc all said Sjogrens but immunologist says no because I do not have the antibodies. Still he prescribed Sjs medication. Otherwise, topical mouth treatments and eye drops every hour or less seems to be the only treatment. but I am OLD not 19 !! good luck, because there isn't much help available. I am in Australia.

[Stumpy01 in reply to willybilly]

Hi I am 46 and have SS from 27. I also live in Australia. I have found taking lacritec or thera tears capsules help. They have flaxseed oil and vitamin E and again trial and era.

[sazzyb]

Hi Carly / willybilly

You don't need the antibodies to have Sjogren's and the immuno should know that. My tests were negative yet I was diagnosed by my Optometrist and my doc agreed. I have very similar symptoms to you willybilly including a dry Schirmer test. I'd go back and wave some research in his face!

Quote:

The antibodies are only present in about 60% of patients with Sjogren’s syndrome, so it is possible to have a negative blood test result and still have the condition.

nhs.uk/Conditions/Sjogrens-...

and

There is no single test that will confirm diagnosis.

About 70% of Sjögren’s patients have a positive ANA test result.

70% are positive for SS-A

40% are positive for SS-B

sjogrens.org/home/about-sjo...

[Spice]

Hi Carly 123 I tested negative with the ss tests but have ss as does my sister. It is a minefield trying to find solutions but a good place to start is to support yourself with natural supplements. A basic one for sore mouths is a Vit b Supplement Cod Liver and Flax Seed oil (good quality) is also helpful. I strangely found that just drinking tea constipated me and have cut that down to 1 drink at night. Its important to drink plenty of water and eat fruit and vegetables. I am also on a natural product which helps at the cellular level. Plus and Ambotrose morning and night produced by Mannatec have helped amazingly especially with fatigue. You have to be stubborn and take it for about four months before making a decision as its takes the body that long to support healthy cell production. I also have hypothyroidism and can't take the orthodox meds for that and have to have the pure extract from pigs (comes from America but sorced by my Dr and pharmacy. As New Zealand is low on Iodine I also need this occasionally. You will find that we all have individual hints as we are the same but different. Now wonder Drs have trouble helping us. Good luck with your search and your experimenting.

[LisaTaylor]

I haven't experienced Sjogrens, or even know someone who had. But I'd like to talk about your dry eyes. It is ideal that you decided to have it checked by an eye specialist, because this is a chronic condition. You have stated there that you had punctal plugs in your lower lids, which is one of the treatments for dry eyes. For now, try taking foods that are good for the eyes, and use protective eyewear depending on the type of environment you are. Also, have a follow up check up with your eye doctor.

[jen7730]

Hi Carly, I know this post was a long time ago but i’m Currently going through the exact same thing. Did you ever get to the bottom of this?

[Ctb567]

Hi Jen7730, unfortunately I never found out what is wrong. An endocrinologist told me that because I have autoimmune diseases in my family it's likely i will get one too and that dry eyes is an autoimmune symptom. he said basically its a sign im getting an autoimmune disease but I don't know if he just said that because he didn't have anything else to say.I did manage to help my IBS quite a lot by having chia seed pudding every 1-2 days for breakfast along with an osmotic laxative every few days. I still don't know what caused the ibs in the first place though.

Let me know if you have any luck finding out what s wrong!

[jen7730 in reply to Ctb567]

Thanks for getting back to me.

I’ve had severely dry eyes for 5 years and I’m 30. Just started up with dry mouth, nose, joint pain and brain fog and general feeling rubbish.

All my tests were “normal” but my dad and grandma had autoimmune disease. I’m going to a sjogrens specialit next month so I’ll let you know then how I get on.