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Sjogrens Topics => Living With Sjogren's => Topic started by: LadyDi on May 28, 2013, 06:56:38 AM

Title: At wits end with Dr's Ignorance of Sjogren's
Post by: LadyDi on May 28, 2013, 06:56:38 AM
Hi everybody, so I saw an endocrinologist at a teaching hospital last week because my primary care sent me there for a second opinion, as to what I should do re: thyroid nodules.

I told her right off the bat that I suffered from Sjogren's and I got the impression that she knew something about the disease. Being at a teaching hospital, I was confident that she would be knowlegable.

So in her report under medical conditions she writes "xerostomia"(dry mouth!) and multinodular goiter.

Why do doctors have such a hard time writing down Sjogren's Syndrome? Do they not view it as a real disease? How much more ignorance do we have to be confronted with? It's bad enough living with this disease on a day to day basis & that doc should have listed SS in her report!

So off to my regular small town endo today who basically just keeps an eye on my thyroid levels and prescribes me my levothyroxine. I was only formally diagnosed last January, so he doesn't know about it yet. Lets see if he even knows what this disease is, or if he too thinks that it's just "dry eyes and dry mouth."

I am so flippin sick of this! Thanks for listening to me vent.
Title: Re: At wits end with Dr's Ignorance of Sjogren's
Post by: sarahjane on May 28, 2013, 08:33:01 AM
I feel your frustration. I too was sent to an endo for my MNG and was told that it wasn't possible for my family to have the history of AI diseases that they had (???) She never even examined me and asked me questions unrelated to anything. My lovely rheumy has decided to keep an eye on my thyroid instead as she said no follow up was needed. Go figure.
I'm learning to stick with Dr's that are informed though I'm aware many people out there haven't found the right one yet.
Title: Re: At wits end with Dr's Ignorance of Sjogren's
Post by: Joe S. on May 28, 2013, 10:01:04 AM
I know your frustration also. It seems that most doctors refuse to acknowledge any AI disease. They tend to belittle them with "Oh, it's just this symptom or that symptom". Arghhhh.
Title: Re: At wits end with Dr's Ignorance of Sjogren's
Post by: irish on May 28, 2013, 11:25:22 AM
It is not always that the docs refuse to acknowledge the diagnosis, but the fact that as soon as they label us with sjogrens or any other autoimmune disease we are doomed as far as the health insurance goes. We can become uninsurable to need high risk rates. If they use the very generic terms and still treat our symptoms---who cares. At least our insurance is not affected.

I had so many diagnoses by the time I was 45 that I was in the high risk health insurance and it cost me dearly. I could not afford to go without insurance as I had to be seen so much. I just paid the health insurance and lived a very, very simple life style. Many doctors are well aware of the implications of putting down a diagnosis that wilil follow us for life. I give these guys credit for using their brains. Good luck. Irish
Title: Re: At wits end with Dr's Ignorance of Sjogren's
Post by: long time dry on May 28, 2013, 11:45:53 AM
That's an interesting point about the insurance and well worth keeping in mind.  It's something I thought about with regards to SS although I have been aware of it for other conditions.
Title: Re: At wits end with Dr's Ignorance of Sjogren's
Post by: deniselb on May 28, 2013, 02:04:27 PM
They don't need much of an excuse to reject you because of pre-existing conditions. They'll use just about anything. They rejected me for using Nasacort spray for my allergies. But starting next year they won't be able to do this anymore.

I read this article by a doctor at the Cleveland Clinic yesterday that disturbed me: (

He's arguing against using ANA tests as a screening tool because of too many false positives, and recommending only running it when the clinical observations point to an autoimmune disease.

I never would have been diagnosed if my doctor had followed his recommendations. After 10+ years of sore joints all over my body, worsening fatigue and high CRP levels, my new primary doctor ran ANA tests and a panel of autoantibodies, for which I am monumentally grateful. I was told my level was far too high to be considered a false positive - 1:2560, and my SSA counts were off the chart. But I don't have any of the classical symptoms of Sjogren's that the author of the article would have considered reason to run the tests:

Dry eyes
Dry mouth
Vaginal dryness
Parotid swelling
Accelerated dental caries or gingivitis

or of any other specific autoimmune disease.

Up until then, the fatigue was chalked up to depression by all my doctors and the sore joints to osteoarthritis (despite there being no outward signs of it). The high CRP levels were never explained; my previous doctor wanted to put my on statins because of it, but an artery scan showed no indication of disease.

I know I'm no doctor, but my feelings are the exact opposite of this guy's - I think anyone diagnosed with chronic depression that doesn't respond to treatment should be routinely tested for autoimmunity, and I think explanations should always be sought for high levels of inflammation. If I could have started on Plaquenil much earlier, I might not have lost the greatest job I could ever have, and I might not have spent ten years going downhill and not knowing why.

After all, if a test has a high rate of false positives that can be taken into consideration when looking at the results. But considering how varied the manifestations of autoimmune diseases are, more information has to better than less in figuring it out.

After reading so many stories, I worry about what will happen to my if I have to change doctors for any reason. I can easily see the next one telling me I don't have Sjogren's. I don't care about that - I'm not entirely convinced that it's what I have anyway, but I do know that some kind of autoimmunity causes my symptoms and that it needs to be treated.
Title: Re: At wits end with Dr's Ignorance of Sjogren's
Post by: LadyDi on May 28, 2013, 02:22:11 PM
Thanks for the responses from everyone. It is really difficult to navigate the health care system today.
Irish, thanks for the information. Now everthing is beginning to make sense to me. Has it always been this way with the health insurance companies, or is it because of the new health care system in the U.S.?

I remember some talk of how the sick will pay more for healthcare premiums than the healthy. I didn't think that they were able to discriminate in that fashion, as I thought that it was illegal.

So this is our doctors's way of keeping us insurable at an affordable rate? I might inquire to my primary care doc about this when I go to see him this summer. I too must lead a simple life, as the cost of insurance, medication, food and shelter must come first and foremost.

Thanks again!
Title: Re: At wits end with Dr's Ignorance of Sjogren's
Post by: grammad97 on May 28, 2013, 02:33:08 PM
Wow I never thought about the insurance part! Now it makes sense. I also think doctors are hesitant to diagnose people with specific AI. They don't want to be blamed for a wrong dx. I am happy to have my symptoms acknowledged and treated and my DX was written well enough to secure my disability payment.
I do understand the frustration of specialists saying its just dry mouth and eyes when its so much more.
Title: Re: At wits end with Dr's Ignorance of Sjogren's
Post by: Nancy60 on May 28, 2013, 04:25:11 PM
The problem with being denied when your are diagnosed with a medical condition is a long standing problem. 

Supposedly the affordable care act will make it illegal for insurances to do that, but time will tell what will really happen.

Personally I do think this is a plus of the new health care laws. But it still might be that the insurance navailable to those of us with pre existing conditions might be more expensive. 

I'm holding my breath to see what happens in this next year.

Predictions are that most small businesses will drop providing health insurance forcing their employees into one of the government programs. I work for a small employer so will possibly be facing this although my employer has said that he wouldn't do that if there is a way not to, it just depends on what it will cost him. 

Title: Re: At wits end with Dr's Ignorance of Sjogren's
Post by: irish on May 28, 2013, 08:56:49 PM
It has been this way for years with the insurance companies. When I was in my mid 40's I was denied an insurance policy because I had some diagnostic issues. I had about 10 diagnoses and one of them was cystic ovaries. All women have cystic ovaries at one time or another. It comes with the territory.

I called my insurance company and got into it hot and heavy with them. I finally said to them "in other words, if I can guarantee you that I won't get sick you will insure me." That is almost exactly what the gal said. It is unbelievable that these companies can do this to us and continue to do this to us. Do not expect that this will stop. It will only get worse as time progresses. Hospital care is unbelievable.

Our oldest son was just taken to ER in early May with possible stroke or Bell's Palsy. He had MRI, cat scan and a fancy scan of the inside of his heart and all the vessels. He was transferred from ER and kept overnight---sooo, ER to room around noon and discharged the next day around 5 PM. Grand total of $19,000. He is in the midst of a divorce and not living very high off the hog as he lives with us for now. Thankfully, he has a good health insurance with a fairly low deductible, but he will be paying this off for a long, long time.

THe time is coming where we will avoid going to the doctor cause the cost will be out of bounds and the insurance coverage will also be too high for us. The projection for around 2016 (hope I got the year right) is around $20,000 a year for health insurance for family of four. Heaven help us. Irish