In His Grip
AlwaysRosie "We can't control the waves, but we can learn how to surf!!"
Co-Moderator - Lupus Forum
UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)
Clickable Links: Lupus Resources Lupous.Org Lupus Criteria (4 of 11) Lupus Chapter Locator
Here is what happened to me. I was diagnosed with Graves disease in 1986 and vitiligo about the same time. Had radioactive iodine treatment and then replacement of the thyroid hormone. Then, in 1993 or so I had my regular thyroid level checkup. It said I was overreplaced and they lowered my dose to one lower than I had ever taken. Not long after that I began having strange symptoms including being very tired, cold, skin was strange, many, many aches and pains and there was also swelling around my eyes. I had very bad stiffening of my muscles.
I made an appointment with a rheumatologist thinking that I was getting rheumatoid arthritis like my mom. Naturally, he checked an ANA and, believe it or not, it was positive. He then checked all the more specific tests and they were all negative.
Finally, after thinking I had lupus, I went back to the endocrinologist and they checked my thyroid level and it was the lowest it had ever been after they changed the dose, way below normal. They increased the dose again and my symptoms went away. They were all due to the abnormally low thyroid. No one had warned me about symtpoms due to low thyroid. They are terrible, truly terrible. It is now 16 years later and I still have a positive ANA but no lupus and no symptoms of lupus. We finally quit checking my ANA.
Hi Diana, I'm sorry you are having such a hard time. I'd love to tell you some of my horror stories but since I got taken off steroids I am having a hard time typing. The only reason I'm up now is because I hurt to bad to sleep. I just wanted to say to keep an open mind. Your endo isn't a rhumy and your rhumy isn't an endo. They may both be wrong or both be half right. I have had dr.s that Made me so mad. and I think my 8 year old granddaghter could do a better job. I walked out on my last gastrointerologist and he deserved to get .
Anyway I just hope you get a good one and they get you on the right meds that will really help you.
In 1986 when I was feeling all kinds of symptoms including extreme anxiety, emotional ups and downs, not sleeping, hair falling out, eating a whole lot and not gaining weight I went to an internal medicine doctor several times and he did not even do one blood test. I also had shaking of my hands and heat intolerance. In fact, when I was in the office of the internal medicine doctor he asked me why I was sweating and I said it was hot in the room. It answered that in fact it was cold in the room. He also asked me why I was losing weight. Then when I went to the dermatologist for my white spots he diagnosed vitiligo. Well, I researched vitiligo and found that it was associated with hyperthyroidism or Graves disease. I researched that and found that I had the symptoms of that. I called him about my extreme hair loss and he said "well you have thick hair anyway." I could not believe it. I ended up going back to him and told him that my grandmother had had some sort of thyroid disease and said maybe we should check my thyroid levels and he said "Nah, I don't think we need to." I left and ended up going to the emergency room at University Hospital and insisted that they check them. They did and that doctor had to get the results because they would not give them to me. Well, they were extremely high and I ended up back at his office because he wanted to treat me for that all of a sudden. He then said my thyroid gland was enlarged.
I was so furious at him that I walked out and went to another ER and they called a good endocrinologist who said in 5 minutes that she was sure I had Graves disease and then proved it.
I ended up writing a letter to the internal medicine doctor and said he should be a male model instead of a doctor, etc. He had perfect hair. And, when I finally paid him for the visit after not wanting to for moral reasons I wrote on my check in the lower left "The Jerk."
Sorry for the length of this post but I will never forget him.
Lynnwood, Co-Moderator: Lupus ForumSLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1Plaquenil, Prednisone(15 5mg), Piroxicam, Xanax, Trazodone, Boniva, Wellbutrin, Valtrex, Vicodin, PrilosecLinks: Diagnosing Lupus (4 of 11), Lupus.org Info, Lupus Resources, Help HealingWell, Drug Interactions
Life is far too important to be taken seriously. –Oscar Wilde, 1882