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sosarah 07-26-2008 09:16 PM

Autoimmune Disorder? or not?
Hi, I am new to this board. I've been reading other posts and am hoping someone has some info for me. I have always been a "sickly kid" which is what my pediatrician wrote on my chart when I was 5. Constant sinus and ear infections with sinus surgery at 14 and 18. In my early twenties I had a severe "flare up" and was diagnosed with Hashimoto's Thyroid disease. Was out of work for 5 months, had severe pain and very high white count. Was treated with prednisone and hospitalized 4 times that year. Also had the flu, pneumonia, bronchitis and strep throat. Finally, started to feel better then developed Avascular Necrosis in both hips. By the time it was diagnosed, 6 months after the prednisone, the left hip was in stage 4 and the right in stage 3. All physicians involved said the prednisone dose was not enough to have caused it but did not have any other theory why it to developed. Went through multiple surgeries and am currently on 2nd hip prosthesis on left hip. Have pain with both hips along with severe muscle pain in neck and shoulders. Pain in neck was diagnosed as stenosis and there is a large bone spur. Flare ups have continued on and off for years and was finally diagnosed with fibromyalgia and some osteoarthritis. Recently, developed a mucous filled cough and had another severe bout with sinus infection and pain. After 4 months and several antibiotics ENT did sinus surgery. When I was being prepped, anesthia asked why I didn't have oxygen. O2 had not been prescribed and my pulse ox was 75. Breathing treatments were administered before surgery. Surgery took 2.5 hours and ENT said there was lots of scarring and inflamation. The mucous I was spitting up was so sticky and thick it was horrible. Post surgery was great first 2 days then had most severe pain yet. After a few of weeks and still not better, ENT did a culture on mucous; they found pseudomonus bacteria. Did 2 months of IV antibiotics and got rid of the pseudomonus. Three weeks later, another culture was done and staph was found. It responded to oral antibiotics and I am currently "bug free" by culture.

I was referred to an Immunologist who did a lung CT for the cough and found bronchiectasis in right lung; blood work showed a low IGG level with a very low IGM level. I am currently receiving IVIG every month and am taking Advair for the throat/lung congestion.

During all of this, I have been doing research and I think I have an undiagnosed autoimmune disorder. I have had an elevated ANA count for years and an alternating high/normal SED rate. My thyroid levels have been fluctuating often and I was told I was in full menopause as well. I have menopause, diabetes, chronic pain, high cholesterol, Hashimoto's thyroid, fibromyalgia, arthritis and bronchiectasis and I am only 43 years old. Due to the AVN, no steroids except Advair are prescribed. Believe me, I don't want to have anything else but I feel we still haven't gotten to the root of the problem. What caused all of this to begin with? Any help would be greatly appreciated.

Ratatosk 07-30-2008 10:35 AM

Re: Autoimmune Disorder? or not?
Have you ever been genetically tested for cystic fibrosis? Not the sweat test, but a blood test...

sosarah 07-31-2008 12:38 AM

Re: Autoimmune Disorder? or not?
I have had the sweat test but no blood test; I did not know there was a blood test for CF. I will look into it. Thanks for responding, I know I wrote too much but you start to get a little crazy just putting out the fires.

Ratatosk 07-31-2008 12:22 PM

Re: Autoimmune Disorder? or not?
DS has CF and passed his sweat test with flying colors. His blood test on the other hand, showed one of the most common CF mutations. There are over 1500 identified genetic mutations for CF. We had no family history.

The sweat test used to be considered the gold standard; however more and more people are being diagnosed as adults. Were misdiagnosed as having asthma or IBS... Depending upon they were affected -- lungs, digestive...

What caught my attention about your post was the pseudomonas. A VERY common bug for CFers to get.

sosarah 08-01-2008 01:42 PM

Re: Autoimmune Disorder? or not?
Thank you SO much for responding; I thought the pseudomonas was a bit crazy as well but the docs just shake their head and say "oh, that's odd." I will be requesting the test next week at my next doc appt. It would explain a lot like the trouble I had getting pregnant and the bronchiectasis which is also very common with CF. I appreciate your response,


Ratatosk 08-01-2008 03:33 PM

Re: Autoimmune Disorder? or not?
Just don't let the doctor try to tell you that you're too old to have CF. As mentioned previously, more and more people are getting diagnosed as adults... And at least if you have the genetic blood testing, it can rule CF out and they can focus on looking for other reasons. BTW, make sure they do an amplified genetic blood test. DS' tested for 30-100 of the most common mutations, but there are over 1500 mutations for CF...

imtupp 09-19-2008 10:55 AM

Re: Autoimmune Disorder? or not?
Hashimotos IS your autoimmune disease, and does not go away. I am opposite of you with Graves' disease. To me a lot of your symptoms are probably due to your untreated Hashimotos. When dealing with the thyroid, it affects so many parts of the body, hence making the diagnosis hard to come by.

Ask your GP for a referral to an endocrinologist, and read "The Thyroid Solution"
Good Luck,

Andi06 10-04-2008 03:31 PM

Re: Autoimmune Disorder? or not?
Hi you sound like my health history, I've been sick all my life though I haven't had the necrosis diagnosis of my hips "yet" I do have alot of pain in them, so bad that I have to have epidurals in my back every four months so that I can function on some level, I wouldn't say normal. I too had this very same question a couple of years ago I went through the "sickly child" syndrome growing up was tested for cystic fibrosis using the sweat test method, all were positive except one so they decided that I didn't have the disease I was unaware that they had a blood test for CF but I will definitely get one now.

I've been diagnosed with fibromyalgia, Chronic fatigue syndrome, Mixed connective tissue disease, because I have so many of the overlapping symptoms, just today i noticed the "butterfly rash for the first time" I've been diagnosed with Inflammatory arthritis and they are starting me on methotextrate finally monday will be my first dose, I'm a little worried because I have the injection form, I hate needles but its one less pill I have to worry about swallowing. I have inflammation every where in my body I just don't get my blood tested enough for them to be what the doctor wants to see they are alway elevated enough to make her believe that I have a underlying connective tissue disease.

I have swollen fingers that look like sausage links, and my ankles get so swollen that I can't fit my feet into my shoes, I hope you get your thyroid issue treated that could make all the difference in the world.

Good luck to you.


sosarah 10-05-2008 09:00 AM

Re: Autoimmune Disorder? or not?
I am sorry to hear you are so sick. I was finally diagnosed with Common Variable Immune Deficiency (CVID) along with bronchiectasis. Bronchiectasis is scarring in the lung due to chronic infections. I have been receiving gammaglobulin for the past 4 months and am finally starting to feel some better. I was also found to have tachychardia, rapid heartrate, due to the Hashimoto's going into overtime again. We are currently working to get it under control. Now that I am feeling some better, I have also realized the sinus headaches I've had for so long are now no longer just sinus but are coming from several bone spurs and stenosis in my neck. For so long, I just thought all the symptoms were from one thing when in reality it is several different things. The gammaglobulin has been wonderful, I feel better and am able to think more clearly. Fatigue is still a big issue but is due in part to the rapid heart rate. The immunologist is working on my meds along with my internist. Don't give up and make sure you have your Immunoglobulin levels checked. Also, get a second and third opinion if you feel your physician is not taking you seriously. It almost cost me my life before I finally got a good diagnosis and on the right medicine. Don't let it go as long as I did; I pray God's blessings for you.

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