Discussions By Condition: I cannot get a diagnosis.

Almost 4 Years and still no diagnosis HELP

Posted In: I cannot get a diagnosis. 10 Replies
  • Posted By: angeleyes121678
  • January 14, 2008
  • 05:41 PM

I"m a 29 year old female who has been without diagnosis for almost 4 years now. I have problems with my balance and have seen so many doctors and specialists to see what is causing these symptoms. It was ruled out that I had MS, it was ruled out that it was an inner ear problem, it was ruled out that it was viral. I have had 4 mri's , 1 ct scan, evoke studies, eng's, abr's, and the list goes on and on. Each test comes back negetive or inconclusive. I do have a low thyroid however my family doctor never pointed out that these symptoms may be caused by hypothyroidism.
I've lost my independance and can't go anywhere without someone. I use a cane to keep me up and the symptoms have not gone away at all. I have even been sent to a psychiatrist because they thought it was in my head. HOwever the psychiatrist said I had a bit of situational anxiety but that he doubted I was psychosematic. Now I'm awaiting a sleep study since I have insomnia.
None of the doctors take me seriously anymore and I'm very frustrated that no one can tell me whats causing this.
Any information from anyone out there would truly help me if only it was to say " HI i know exactly how you feel." Sincerely Angeleyes....

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  • YOUR THYROID IS THE MASTER GLAND & IF ITS NOT WORKING RIGHT NOTHING WORKS RIGHT. WHAT KIND OF MEDICINE ARE YOU ON FOR THYROID? MOST DOCTORS PUT YOU ON MAN MADE SYNTHETIC ONES LIKE SYNTHROID OR LEVITHOID, WHICH DON'T HAVE ALL THE RIGHT THINGS. I CAN'T REMEMBER WHICH ONE THE PRESCRIPTION ONES LACK, I STUDIED THIS WHEN MY MOM WAS PUT ON THYROID MEDICINE FOR LOW THYROID. IT GOES SOMETHING LIKE THEY ONLY HAVE T3 OR ONLY T4 WHICH MAKES THE OTHER ONE LOW AFTER A LITTLE WHILE OF USE. I GOT MY MOTHER ON ARMOR THYROID WHICH IS FROM A PIG. IT IS AS CLOSE AS WE CAN GET TO HUMON THYROID. SHE FEELS MUCH BETTER AFTER BEING ON IT. NOW THOSE DOCTORS THINK YOUR CRAZY IF YOU TELL THEM THAT, BUT THEY DON'T HAVE TO LIVE WITH YOU SYMPTOMS. TAKE CHARGE OF YOU HEALTH, BECAUSE THEY WON'T. GOOGLE UP ARMOR THYROID & FIND OUT ABOUT IT. YOU CAN EVEN GET IT WITHOUT A PRESCRIPTION AT THE RIGHT PLACES. A GOOD WAY TO SEE IF YOUR THYROIDS WORKING IS MORNING BODY TEMPATURE. TAKE YOUR TEMP UNDER YOU ARM FIRST THING IN THE MORNING BEFORE YOU EVER GET UP OR ANYTHING & LEAVE IT THERE FOR 10 MINUTES. IT SHOULDN'T BE UNDER 98 DEGREES. IF IT IS YOU THYROID IS STILL NOT WORKING RIGHT. EVEN ONE THENTH OF A DEGREE CAN MAKE ALL THE DIFFERENCE IN THE WORLD AS FAR AS YOU BODY GOES. GET A BOOK CALL ALL YOUR HEALTH QUESTIONS ANSWERD NATURALLY, BY MAUREEN KENNEDY SALAMAN. THAT BOOK IS A LIFE SAVER. IT HAS HELPED MY FAMILY & I MORE THAN ANYTHING IN THE WORLD. GOOD LUCK & GOD BLESS.ACDHARRISON:) I"m a 29 year old female who has been without diagnosis for almost 4 years now. I have problems with my balance and have seen so many doctors and specialists to see what is causing these symptoms. It was ruled out that I had MS, it was ruled out that it was an inner ear problem, it was ruled out that it was viral. I have had 4 mri's , 1 ct scan, evoke studies, eng's, abr's, and the list goes on and on. Each test comes back negetive or inconclusive. I do have a low thyroid however my family doctor never pointed out that these symptoms may be caused by hypothyroidism. I've lost my independance and can't go anywhere without someone. I use a cane to keep me up and the symptoms have not gone away at all. I have even been sent to a psychiatrist because they thought it was in my head. HOwever the psychiatrist said I had a bit of situational anxiety but that he doubted I was psychosematic. Now I'm awaiting a sleep study since I have insomnia. None of the doctors take me seriously anymore and I'm very frustrated that no one can tell me whats causing this. Any information from anyone out there would truly help me if only it was to say " HI i know exactly how you feel." Sincerely Angeleyes....
    acdharrison 5 Replies
    • January 15, 2008
    • 05:38 AM
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  • Thanks so much for your reply. In answer to your questions they have me on synthroid levothyroxine(i think it's spelled like that) .05 milligrams, but everytime i get tested again my tsh keeps rising My body temperature has always been lower than 98 degrees every since i was diagnosed with hypothyroidism. My last appointment my body temp was 97.2 degrees, and when I test in the morning it's around 97.5. I guess this means that my thyroid is still not functioning right. So of course my body would have all kinds of things wrong with it. I'll have to keep on the doctors untill they can take me seriously. Thanks so much for your reply and advice and I'll definetly look those things up on the internet. Take care angeleyes....
    angeleyes121678 2 Replies
    • January 16, 2008
    • 00:22 AM
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  • YOU KEEP AFTER IT, BECAUSE 97.2 DEGREES IS WAY TO LOW FOR A BODY TO FUNCTION CORECTLY. DOCTORS HAVE GOTTEN SO USE TO SEEING PATIENTS WITH LOW TEMPS THAT THEY DON'T THINK ANYTHING ABOUT IT ANYMORE. TRY TO MAKE A APPOINTMENT WITH A OSTEOPATHIC DOCTOR AROUND WHERE YOU LIVE. I'VE HAD SEVERAL HEALTH CONCERNS FOR A FEW YEARS & I DIDN'T GET ANY ANSWERS UNTIL I FOUND THIS OSTEOPATHIC DOCTOR IN MOORESVILLE INDIANA. YOU NEED TO EAT FOOD RICH IN IODINE, WHICH HELPS THE THYROID. IODINE IS WHAT HELPS THE THYROID TO WORK RIGHT. I ALSO HAVE LEARNED THAT FLOORIDE IN TOOTHPAST & DRINKING WATER IN LARGER AMOUNTS KILL THE THYROID. YOU MIGHT GET FLOOIDE FREE TOOTHPAST & DRINK ONLY FILTERED WATER. UNCLE TOMS TOOTHPAST HAS ONE THAT DOESN'T HAVE FLOORIDE IN IT. YOU COULD ALSO BRUSH YOU TEETH WITH BAKING SODA. I EVEN PUT A FILTER ON MY SHOWER BECAUSE YOUR SKIN ABSORBED MORE CHEMICALS FROM A SHOWER THAN DRINKING WATER. I BOUGHT A SHOWER FILTER AT LOWES HARDWARE FOR ABOUT 20 TO 30 DOLLARS. YOU WOULDN'T BELIEVE THE DIFFERENCE YOUR SKIN AND HAIR FEEL AFTER USING IT. YOU MIGHT ALSO TAKE A GOOD LIQUID MINERAL. LIQUID IS BETTER THAN PILL, BECAUSE YOUR ONLY A GOOD AS YOUR BODY IS ABSORBING THINGS. LIQUID IS ALREADY BROKEN DOWN, SO IT SAVES YOUR BODY A LOT OF STRESS. WHAT EVER YOU DO YOU NEED TO GET YOUR TEMPATURE UP TO THE 98's AT LEAST. MY SISTER IN LAW HAD A ALTERNATIVE DOCTER PUT HER ON SOME PILL CALLED THYROSTIM MADE BY A COMPANY NAMED BIOTICS RESEARCH CORPORATION. IT SEEMED TO REALLY HELP HER, BUT SHE SAID IT MADE HER REALLY HOT. THIS PILL IS SUPPOSE TO WORK WITH YOUR OWN THYROID TO GET IT WORKING RIGHT. YOUR THYROID WILL NEVER WORK RIGHT IF YOUR ON THOSE MAN MADE SYNTHETIC PRESCRIPTION PILLS. IT WILL END UP SHUTING DOWN YOU OWN THYROID IN THE LONG RUN. THATS WHY A PERSON HAS TO ALWAYS KEEP ADJUSTING THEIR THYROID MEDICINE. I WOULD REALLY SUGGEST YOU CHECK INTO THE ARMOUR THYROID. GOOD LUCK AND WRITE ME ANYTIME. my email address is acdharrison@sbcglobal.net God Blessdavid Thanks so much for your reply. In answer to your questions they have me on synthroid levothyroxine(i think it's spelled like that) .05 milligrams, but everytime i get tested again my tsh keeps rising My body temperature has always been lower than 98 degrees every since i was diagnosed with hypothyroidism. My last appointment my body temp was 97.2 degrees, and when I test in the morning it's around 97.5. I guess this means that my thyroid is still not functioning right. So of course my body would have all kinds of things wrong with it. I'll have to keep on the doctors untill they can take me seriously. Thanks so much for your reply and advice and I'll definetly look those things up on the internet. Take care angeleyes....
    acdharrison 5 Replies
    • January 16, 2008
    • 04:06 AM
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  • Do you have Hashimoto's Autoimmune Thyroiditis? It's the most common cause of hypothyroidism in the US and other western countries. You will have elevated thyroid antibodies if you have Hashimoto's...Your story sounds like mine, except that I never knew I had an autoimmune thyroiditis until my 8th neurologist checked my thyroid antibodies. She was testing for a disease called Hashimoto's Encephalopathy, which is a rare neurological complication of the autoimmune thyroiditis. It is treated with steroids.You may want to Google HE. It can cause ataxia (problems with balance and coordination). I had ataxia for years, not to mention profound fatigue and headaches. I was worked up for MS and every other neuro disease imaginable!!! And yes, they sent me to the shrink, too, after everything came back normal (like many patients with HE, my TSH and other hormone levels were always normal, so they did not check my antibodies). No one could explain my use of a cane!The treatment for HE (also known as SREAT- steroid responsive encephalopathy associated with autoimmune thyroiditis) is a pulse of steroids. I no longer need my cane and the fatigue is much much better! I'm also on a touch of Levoxyl which gives me added pep!Chances are, your doctors have never ever heard of HE/SREAT. It is a newly recognized condition. Your neurologist probably has never heard of it. You can access a list of journal articles on it by going to "Pub Med" and typing in Hashimoto's Encephalopathy. Don't be scared by all the severe cases with the coma, psychosis, and/or seizures. I am a "mild" case, too. I suspect that there are many more out there.There's also a pathologist ("the Pathguy") who has his own website, designed to help teach medical students. One night I googled my illness (HE) and came across his site, where he states "DO NOT CONFUSE HE FOR MS!!!!" I guess becasue it can produce focal deficits tha wax and wane, it is sometimes mistaken for MS.You are not crazy! You might have this rare complication of the thyroiditis!!!Oh yeah, and by the way, HE causes sleep disturbances. In me, I had daytime somnolence and nighttime insomnia! Good times!
    Anonymous 42789 Replies
    • January 16, 2008
    • 06:14 AM
    • 0
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  • Oh my god you guys are great. YOu've given me so much information already that I never knew existed. It's amazing what one can find out by coming to sites like this one. In regards to that Hashimoto's thyroiditus, all i can say is wow. I never knew that existed either. I also walk with a cane now it's been like that for almost 4 years now. At first the neurologist said I has axtacia and then he went back and said no I don't because he couldn't find lesions in the Mri for ms. Then when I finally did go to and endocronologist all he did was feel if my thyroid was swollen and he didn't even want to test me he said oh your family doctor can take care of that. NO one ever told me that my balance problem could be a side affect from having a really wacked out thyroid. This makes me feel so much better because before i had nothing to go on. NOw with your guys help I can finally approach the doctors and see if they can do these tests. I thank you both for replying and I hope we keep in touch. This means so much to me, truly it does. God bless you both.. angeleyes take care....
    angeleyes121678 2 Replies
    • January 16, 2008
    • 07:01 PM
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  • I was thinking of you all day, and I hope this does help. You will be in my prayers!One word of caution, in case your doctors think indeed your symptoms may be from HE, and treat it with steroids: steroids can drop your TSH a little and make you a little hypothryoid, so you may not feel better until afterwards. HE may also be prone to relapses, although the majority of people get better after just one treatment.Best Wishes!
    Anonymous 42789 Replies
    • January 17, 2008
    • 02:25 AM
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  • Angeleyes, I was diagnosed with Hashimoto's 33 years ago, after the birth of my second daughter. It can cause all of your symptoms and more. The most important thing to do is find a doctor that specializes in thyroid disease. Many endocrinologists treat a lot of diabetics and they aren't really interested in thyroid disease. I was inpatient in a psych hospital with depression caused by my thyroid being out of whack. This is what you need to do:1. Find thyroid specialist - keep changing doctors until you find one you can talk too and trust - you will have this disease for life. 2. Start reading all you can about thyroid disease3. Track your blood tests and your medication changes. 4. Thyroid disease teaches you patienceYour doctor will tell you the results of your blood work and set up a file on your PC and keep track of your T3, T4 and TSH. Also, Synthyroid comes in mcg - micrograms and changes of small amounts can make a huge difference. Synthyroid comes in something like 60 different dosages because a small change can make a difference. A change in medication can take up to 6 weeks for you to feel better and the change to appear in your bloodwork. I have been through it all so if you have any questions. :)
    ctirish 2 Replies
    • January 17, 2008
    • 03:40 AM
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  • Hi Angeleyes,You might also have Cerebellar Ataxia. Did the radiologist report ever indicate your cerebellum had decreased in size between MRI's?Did they even see the earlier MRI's to compare with?With the possible autoimmune thyroid problem you should ask your doctor to also order a Gliadin (gluten) Antibody test (soon, like this week). If the result is well above zero you have gluten intolerance and may have Celiac Disease. If the Gliadin is high you should go on a rigid gluten free diet for at least a year and keep a journal. If you notice improvements, you need to stay on the diet. I would not go on the diet unless the Gliadin result is well above zero.Lots of people go on the diet 1/2 way and fail.:( I think you need the incentive of the Gliadin test to keep you on the diet because it may take quite some time to notice improvements. Please note that you can have several diseases at once and if they are all autoimmune some treatments will affect all of them (steroids) so it may appear like you only have one.Best of luck to you, Bear:cool:
    Anonymous 42789 Replies
    • January 17, 2008
    • 07:39 PM
    • 0
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  • I just found a site that I believe is going to solve a lot of my problems. If you google Wilson's Temperature Syndrome, they may have your answers there. If you have low or high body temperatures this can affect your thryoid. I have run low 97.5 most of my life and now I'm finding out why I feel cold all the time. I have found a doctor in Vienna, VA that does testing for this and a lot of the other aliements you may have. Once on the site there should be a link to Doctor's and click on that then follow from there. I have been having problems as long as I can remember, probably since I was 12 years old. I am now 53. It won't hurt to look!!! I wish you all the luck. I know how it feels to be or feel sick ALL the time!!!
    MsChessy 1 Replies
    • January 19, 2008
    • 00:26 AM
    • 0
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  • I'm not sure if you are still reading these comments or not, but I forgot to mention that you might want to ask to be checked for celiac disease as well as HE. I think a couple of people mentioned this above as well. If you have autoimmune thyroiditis, you are at increased risk for celiac disease (and vice versa). Some doctors even think that by following a gluten-free diet, you can lower your thyroid antibodies, at least in the early stages of the thyroiditis.The reason I mention celiac is that it can also cause ataxia (and other symptoms, too).Unfortunately, just as Hashimoto's Encephaloapthy is not very well known yet, neither are the neurological manifestations of celiac disease.So, you might want to find a neuro who is open to investigating both possibilities.I am sorry you are 4 years undiagnosed!Do not let your doctors dismiss your case. It is not normal to have to use a cane!!!!!
    Anonymous 42789 Replies
    • January 21, 2008
    • 04:16 AM
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