Back in the spring and summer of 2009, I started having some major problems with my thyroid. My Free T4 was so low that it was not even registering a number with the lab and my Anti Thyroid Peroxidase (TPO) was over 3,000 on a lab range of 0-9.
Around that same time, I started having problems with my mouth being really dry. When I started looking for causes of a dry mouth, I found out that Hashimoto’s can cause a dry mouth. Even though I had thyroid problems for awhile, it was never that bad before and it was also the first time anyone had actually tested me for Hashimoto’s.
In reading up on Hashimoto’s, I read an article talking about groupings of autoimmune problems. In the grouping of the ones that I have, they mentioned something called Sjogren’s Syndrome. I did not know what that was so out of curiosity, looked it up. Sjogren’s Syndrome is an autoimmune attack on your bodies moisture producing cells. Other than having a dry mouth, nothing else really fit so I dismissed it as a potential cause for my dry mouth.
This spring, I started having problems with my eyes being really dry. I remembered reading about Sjogren’s Syndrome, so started reading more about that. This time instead of nothing fitting, it was more like, “wow, that is me.” The last two years, my BUN levels have been elevated – that indicates you can be dehydrated, but I never made the connection before. One of the articles that I read talked about low white blood cells – my white blood cells have been low off and on. My skin has been very dry and I have been really fatigued since last fall.
In reading about Sjogren’s Syndrome, I also learned that it is hard to get a diagnosis. It takes on average 6 ½ years to get a diagnosis. I wanted to find a good doctor, so tried to find someone in Pittsburgh that would be good with Sjogren’s. I had to wait until June to get an appointment. I wasn’t real thrilled with this doctor the first time I saw him, but did not want to have to wait several more months to try and get in with someone else. I knew from that first visit with him that he was not up on the current treatments for Sjogren’s.
He agreed to the blood work for Sjogren’s. Only about 40% of the people with Sjogren’s actually test positive for Sjogren’s thru blood work. Someone that has other autoimmune problems will most likely test negative. I was not surprised when the blood work came back negative.
When I went back for my second appointment with him, he pretty much dismissed the possibility of my having Sjogren’s, but after we talked for a little bit, he surprisingly agreed to schedule a lip biopsy. They do a lip biopsy of the salivary glands to check for inflammation. He referred me to an ENT to have a lip biopsy. Several days after the lip biopsy, the ENT called me to let me know that was negative. After having the biopsy done, I learned that they should remove at least 4 salivary glands – the ENT only removed 2 of mine.
Last Thursday, I had my 3rd and final appointment with the rheumatologist. He is the Dr. G that I wrote about being frustrated with. It was pretty much a waste of time and money being there. He told me that the lip biopsy came back negative, which I already knew. Then he informed me that he could not help me and wished me luck figuring it out.
Friday, I made a trip back to Pittsburgh to see my eye doctor. They do something called a Schirmer Test to measure the tear production in your eyes. By Friday, I was so tired that I forgot to ask the number for mine, but the tech that did mine said that the whole strip should have turned blue and mine had a tiny blue bar at the one end. Some of the litmus paper also got stuck to my eye because my eye was so dry.
When my eye doctor came in, he said that the only thing that testing negative for Sjogren’s tells me is that I tested negative. He was very surprised with what the rheumatologist told me and even asked me who I saw. I left with a script and some samples of Restasis for my dry eyes.
I also decided to post the question on TuDiabetes. As usual, the DOC has answers, but now I am more confused than I was before. Autonomic neuropathy can cause the dehydration and dryness. I have autonomic neuropathy. Someone also posted a link to a Dlife article about autonomic neuropathy and dry eyes. I also know that my eyes have been affected by autonomic neuropathy because my pupils are slow to dilate.
What I don’t understand is for the last 3 years, my A1cs have been in the 5s other than one 6.1. Even before I hit the 5s, I was in the low 6s. One sentence from the article on Dlife is, “Keeping blood sugar levels as tightly controlled as possible is the first step in preventing and remedying dry eye syndrome associated with diabetes.” I test my BS 18 times a day to keep an eye on it. Why would things get worse now?
Since I already have other autoimmune problems in the same grouping with Sjogren’s and that might take another 4 ½ years to officially show up, Sjogren’s isn’t entirely ruled out. The lip biopsy was also done wrong so can’t really even rule out Sjogren’s based on the lip biopsy. Some doctors will actually treat based on symptoms because it can take so long for someone to show positive with the tests. But I also have autonomic neuropathy, so that is not ruled out either. I have no clue who I should try and get an appointment with now!