Negative lip biopsy

[Pete0211]

Well, I learned today that my lip biopsy was negative for Sjogren's.

I also learned that I have a nodule on my thyroid (that wasn't there in Sep 2015 when I had my parathyroidectomy), so I have to have that biopsied next. I don't know if this may be / is related to my dryness symptoms - guess I'll have to see what the rhuemy thinks at our next appointment.

Wheeeee! Ain't this stuff fun?

Hope everyone is having a wonderful day. Happy holidays everyone!

[Carolina]

Hang in there, Pete.  The Lip biopsy is the 'gold standard' but only for clinical research purposes.  It is possible to have the problems of Sjogren's without any positive tests.

However, now that you have nodule on your thyroid, a whole new area is open for consideration.  I don't know much about thyroid problems or what a parathyroidectomy is.

I guess it's time to Google more stuff.

Happy New Year...hugs,  Elaine

[SjoGirl]

Pete I had a negative lip biopsy as well so Hopkins said I have Undifferentiated Connective Tissue Disease (a doc here said I had Sjogrens and others concur). Hopkins said it didn't matter because treatments for UCTD and SjS are the same.

The key for now is to at least have treatment for symptoms, even if using OTC medications and pain relievers.

Hope you are able to determine what is going on with your thyroid.

[Pete0211]

Thanks Carolina and SjoGirl.

I'm not really worried at this point - right now, my symptoms are simply the dryness, and those are in check for the most part, with cevimeline and my increased awareness of the issues.

Carolina - I had a parathyroid gland removed last year. We start life with four of them, and their purpose is to regulate calcium in the body. When one goes bad, the others tend to go dormant and let the bad one allow bad things to happen (usually, it goes hyper and dumps parathyroid hormones into your system, signalling the body to dump calcium, and you end up in a vicious cycle as your body stops absorbing calcium and pulls it from bones).

The ENT didn't seem to think the dryness issues are related to the thyroid nodule, but we need to biopsy it since my father has a history of thyroid cancer when he was a teen, so it's best to be safe.

[Deb 27]

Pete, hang in there. Was the lip biopsy bad for you or did the ENT do a good job? Sorry about the results. I had to wait a long time to get answers about my auto immune dz. My antibodies were all negative  but lip biopsy positive. I had a positive ANA and high sed rate. Is your sed rate high? It can take a while for these things to develop. I hope you get some answers soon.

Happy Holidays to you too!

[Pete0211]

Hi Deb The ENT was good, and he and I have discussed this issue since the first days of my symptoms. He intentionally took his time to find good chunks of glands, and aside from the local anesthesia wearing off earlier than expected, I didn't have much issue with it post-procedure.

All of my body fluid work has been unremarkable in regards to autoimmune diseases, thyroid issues, vitamin / mineral deficiencies, etc consistently since this started. Looking back at my blood tests I don't see anything for sed rate - I'll have to check with my rheumy at the next appointment.

[Linda196]

Sed rate is also called ESR (erythrocyte sedimentation rate)

[Pete0211]

Didn't see that one, either.