Autoimmune diseases?

Question

was diagnosed at age 31 with Graves Disease. The symptoms came on suddenly and severely. I was put on the medications used for Graves Disease and also the symptoms the Graves Disease was causing such as high blood pressure. Then I started getting severe hives to the point of having to be rushed to the ER because they were in my throat.

Three endocrinologists later it was determined by the majority that I was allergic to the Graves Disease medication and I should get radioactive iodine to destroy my thyroid. I was told that my increased heart rate, increased blood pressure etc. was life-threatening so I consented to the RAI.

I am now 35 years old and the journy to finding out exactly what is wrong with me continues. My thyroid eventually bottomed out after receiving the RAI, so I had all of those symptoms. I am currently on Synthroid 175 MCG. Then I was diagnosed with polycystic ovarian syndrome. Then I developed insulin resistance. I am now on Janumet to control the insulin resistance. Last year I developed severe chronic anemia and had to get 9 rounds of IV iron infusions. For the last two years I have been going to my endocrinologist every three months because something always goes wrong. I had a bout of severe intestinal distress and kept nothing down for three weeks and celiac disease was ruled out by and colonoscopy. Between April and today I have lost 40 pounds. My latest round of blood work shows that I have diabetes insepidus (sp) which is caused by a malfunctioning pituitary gland. I also have a chronic UTI infection for the last four months, increased white blood count in my urine, chronic fatigue, horrible moods, achy joints and bones, and a general feeling of being confused and aggitated.

Anyone have any clues as to what I should do next? the endocrinologist ran some kind of blood work panel - -I believe called and ADH panel and I will get it back next week and then he wants to send me for an MRI. It was also shown that my thyroid is now overactive again even though technically I am not supposed to have a thyroid.

What are other options or other tests I should ask for. The doctors seem so confused with what is going on with me because with regard to the autoimmune diseases it is confusing. The third endocrinologist I have been seeing came highly recommended because he is used as an expert witness related to autoimmune disorderes in court cases.

Thanks for any help or guidance.

Answer 1

I urge you to go to the nearest University Hospital (generally near a Medical School) for help. You now have several systems involved & you will go broke in bod & in dollars before long.

You'll get the latest, best treatment for all your difficult problems there. They'll help you find ways to meet the costs. You can also consider treatment overseas (India is very good, while reasonable in cost [even including food, flights, lodging + they speak English)! Be prepared to spend a lot of time & have a lot of patience; you already must be doing that anyhow... Honestly, just do it! Good luck! :)

Answer 2

I'm sorry you're going through so much.  Any chance of you getting to a major teaching hospital, or Johns Hopkins, Mayo Clinic, etc.?  

Why not try joining an online support group for autoimmune disorders?  I went to yahoo groups and several came up.  Maybe there is someone in a group who can help you get on the right path to feeling better.

Sorry, that's all I've got.  Good luck and I hope you feel better.

Answer 3

Wow, you've got it rough!  I'm so sorry!

Have you had any vaccinations??  My brother was diagnosed at age 48 with an auto-immune disorder just a month or so after getting both the flu shot and a tetanus booster.  Just wondering...

I'm no doctor, but have you looked at mastocytosis?  You could google it and see if you have any of the other symptoms.  Whatever you do, keep going to doctors until you find one that can correctly diagnose you.  I can only imagine how extremely frustrating it must be, but no one doctor knows everything, and you may have to visit many doctors before you get the right answer.  You probably also should be doing research online whenever possible.

Good luck -- sounds like you need it!

Answer 4

Have you been tested for Systemic Lupus Erythematosis? A simple blood test can be done to either confirm or rule this out. The type of specialist that usually works with Lupus patients is a Rheumatologist, but any Physician can do the diagnostics.