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Old 09-14-2007, 11:59 PM   #1
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Join Date: Sep 2007
Location: macomb. mi, usa
Posts: 1
karen2manyprobs HB User
Re: Self attacking auto immune disorder

I am 54 and in the process of being diagnosed with some sort of auto immune disorder. Since 1978 I have had a surgical procedure for one thing or another. I had 9 miscarriages, my spine is fused because of it's deterioation, my tonsils ate themselves away, I have thryoid problems, gall bladder has been removed and I've had a complete hysterectomy. I had a few years with Raynauds, psoriasis and arthritic hands, back, hips, and knees. The last 20 years I have not been allowed to donate blood because of elevated liver enzymes. Now I have been suffering with Uveitis since April of this year. After an extremly high dose of Prednisone 80mg my sight in my only good eye is back! I have Glaucoma, Multiple Retina detachments. a detached vitreous, retina pucker, cataracts (fixed now) and the Uveitis. I have had one illness after another for the majority of my life - but I maintain a positive attitude and am thankful for each day that doesn't bring a more serious life threatening illness. I will be relieved when they finally know the cause and I can begin treatment.

I worried about living long enough to raise my kids and now my youngest is 15 years old. Her body attacked her pancreas at 11 years old and now she has juvenile diabetes. Oddly enough my son was born with a deforemed pancreas.

So keep the faith - I will keep you in my prayers. I would stay away from tatoos. Some hepatitis bugs are airborn and live up to 48 hours after the blood is exposed to the air.

 
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Old 09-22-2007, 04:56 PM   #2
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Join Date: Dec 2002
Location: US
Posts: 1,467
monkey5 HB User
Re: Self attacking auto immune disorder

Dear board, i have been sick on off for a long time, seems everything goes wrong. I have experiences dizziness, heat intolernce and the list goes on, now i know this can be of many things, but one thing that had disturbed me in the past is that i was haveing thyroid issues and when they did the blood work, it came back something like not showing any antibodies wich i think confused the Dr. as i was defenietly having signs and symptoms of the thyroid issue, could i possibly have an autoimmune disease, if so what test would show? I keep mentioning similiar things since this to my regular dr. and she says that i woold run a fever with most everything, and i talked to a friend the other day that was told one person doesn't always have a fever. and when i was getting ready for surgery i was haveing a thyroidectomy, i was running a mild fever and this has happened a few times, i am just wondering because i have had alot of other tests come up negative for certain things but haven;t had a blood test in at least over a year or more other than thyroid tests since surgery. This is a long shot, but i'm thinking maybe i should push for blood work, what do you think? I was mainly thinking because here lately i am having other pains, body aches, chills, since i have dealt with back pain, and sciatic like symptoms. I mean honestly how would they know if i don't have something attacking my body without blood work right? It just all seems odd to me, as i have weird days.
Love, Monkey

 
Old 09-27-2007, 12:23 PM   #3
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Join Date: Sep 2007
Location: tecumseh michigan
Posts: 23
parcarp HB User
Re: Self attacking auto immune disorder

Hi everyone,
New here and to healthboards in general, thought I would pop into the autoimmune area to see what is up and I see a lot of scared folks....

I have an autoimmune disease that is called the "self attacking" and it is called HASHIMOTOS thyroiditis. Generally you are diagnosed by a blood test to see where your thyroid antibody level is, not your TSH or T4 or T3, the anitibodies.....if they are sky high, welcome to the club.....

Now everyone here is experiencing one or more of the same symptoms I did, and a long story short, I lost almost 4 years of my life to Hashimotos, and finally found and endocrinologist who gave a darn, and he saved my life....yep, lost LOTS of hair, had to have an endometrial ablation because my periods were horrible, my youngest who is 8 now, was a preemie at 2lbs because she wasn't growing, (Hashimoto's) depression symptoms, actually depressed too! Anxiety, not sleeping, sleeping too much, wrong time of day sleeping, couldn't function at all.....the right blood tests, the right meds, and I had my life back within 6 months! I encourage you all to push for an actual diagnosis, to get copies of your blood tests at all times, to seek out a endocrinologist who is prominent and who has dealt with Hashimoto's more than ONE time, and who listens to the patient BEFORE they listen to a text book!

Good luck and God Bless,
Paulette

 
Old 10-01-2007, 08:52 PM   #4
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Join Date: May 2007
Location: honolulu
Posts: 84
grace1908 HB User
Re: Self attacking auto immune disorder

I know I've seen Iona over on the thyroid board but for everyone else you may want to stop in and say hi. There are a lot of very smart guys and gals over there willing to help with questions, symptoms, labs and the struggles with your docs. A lot of them have experience with many autoimmune type conditions.

Take care everyone

Grace

 
Old 10-26-2007, 09:34 AM   #5
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Join Date: Sep 2005
Posts: 239
mbbasketball HB User
Re: Self attacking auto immune disorder

For those of you who may have multiple autoimmune systems, you may want to look up polygrandular autoimmune syndrome. Depending upon age of onset of autoimmune diease, kind of autoimmune diease you have, you maybe able to pinpoint which syndrome you have. From my read, once dx with the class of syndrome, you will have to get treatment as each autoimmune diease come up.

 
Old 10-31-2007, 09:27 AM   #6
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Join Date: Jun 2006
Posts: 94
Crystalgray HB User
Re: Self attacking auto immune disorder

I have been having problems with my immune system for a while as well. My thyroid is enlarged and causes me pain on a daily basis. I was tested for antibodies (3x's) and the tests came back normal. I have been tested for ANA and one test came back positive yet on the low end. I have gained weight and can't seem to lose it and my cholesterol is up at times. The other odd symptom is that my metabolic system seems to be deteriorating as well. My co2 levels are drastically low, my chloride levels are high-my doctor labeled it as metabolic acidosis. I saw a Nephrologist and he's treating me with sodium bicarbonate.

My symptoms are really odd: my face broke out with a really bad rash (yet its not lupus), I experience really bad breath, my thyroid is pretty swollen on one side, (I had an ultrasound and it was really small so my doctor told me not to worry) I urinate constantly, I am cold all the time, and sleepy.

I've had a million theories yet nothing seems to work.

 
Old 02-25-2008, 03:35 AM   #7
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(female)
 
Join Date: Feb 2008
Location: seaford n.y. usa
Posts: 54
sherryk62 HB User
Re: Self attacking auto immune disorder

just read your post and I am feeling the same way. Noe I know what doc to see thank you.

 
Old 03-20-2008, 08:29 PM   #8
Senior Member
(female)
 
Join Date: Dec 2006
Location: nh
Posts: 233
ryebeach HB User
Re: Self attacking auto immune disorder

Quote:
Originally Posted by monkey5 View Post
Dear board, i have been sick on off for a long time, seems everything goes wrong. I have experiences dizziness, heat intolernce and the list goes on, now i know this can be of many things, but one thing that had disturbed me in the past is that i was haveing thyroid issues and when they did the blood work, it came back something like not showing any antibodies wich i think confused the Dr. as i was defenietly having signs and symptoms of the thyroid issue, could i possibly have an autoimmune disease, if so what test would show? I keep mentioning similiar things since this to my regular dr. and she says that i woold run a fever with most everything, and i talked to a friend the other day that was told one person doesn't always have a fever. and when i was getting ready for surgery i was haveing a thyroidectomy, i was running a mild fever and this has happened a few times, i am just wondering because i have had alot of other tests come up negative for certain things but haven;t had a blood test in at least over a year or more other than thyroid tests since surgery. This is a long shot, but i'm thinking maybe i should push for blood work, what do you think? I was mainly thinking because here lately i am having other pains, body aches, chills, since i have dealt with back pain, and sciatic like symptoms. I mean honestly how would they know if i don't have something attacking my body without blood work right? It just all seems odd to me, as i have weird days.
Love, Monkey
Hi Monkey
Have you ever thought about being tested for Lyme disease there is a board on this and you are describing many of the symptoms of this and it's co-infections much like I have had . This does not show up in a normal blood test but can involve many of your symptoms and thyroid problems along with adrenal issues . Do you have headaches and sweating as well ?Sometimes people never even remember having being biten . About 50% of the time qa person will develope a rash but not the other 50% of the time
flu like symptoms about three weeks after being infected
Look for ticker on the lyme board she is very informative and has a list of symptoms
Good luck with your search for answers
take care
ryebeach

 
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