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    Old 04-13-2004, 02:35 PM   #1
    GracesMomMom
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    Graves diagnosis?

    Hi all, still on the journey to a diagnosis. I have a question for those Gravies who have a diagnosis. Were all of you diagnosed based on antibody tests? I want to make sure my doctors know what they're doing. I haven't seen anything on this board about CT scans of the eye area. I had one this morning, the opthamologist I saw yesterday seems pretty sure it's Graves, and his intent was to diagnose it based on the CT scan. Thank God for insurance.

    I'm beginning to think I inherited HypoT from my mother and Graves from my father (his mother might have had undiagnosed Graves - she fell apart by age 40 and had rheumatoid arthritis and numerous other problems). Wouldn't that just be the pits. Might explain why my symptoms are SO weird. Lucky for me, I now have two doctors who believe something thyroid related is wrong with me... Now if one of them would just give me some drugs and get this ball rolling! I'm so tired of feeling like crap! I believe I'll be referred to an Endo next. More antibody tests. My PC doctor didn't know what to test for, and I wasn't prepared that day to tell him what to test for.

     
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    Old 04-13-2004, 04:20 PM   #2
    K9Mom
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    Re: Graves diagnosis?

    Hi there,
    A CT scan of your orbits can diagnose Graves Ophthalmopathy (also called TED - Thyroid Eye Disease). The eye disease runs it's own independent course.

    Graves' disease itself can be diagnosed by doing thyroid antibody tests. Preferably the TSI (Thyroid Stimulating Immunoglubulin) and TPO (Thyroid Perioxidase).

    Most doc's like to do the radioactive iodine uptake and scan test to diagnose Graves...but the truth be known, it is really not necessary to dx Graves. Simply checking your blood for the CAUSE of Graves - which is the antibodies - will give a definative answer regarding diagnosis.

    If there are palpable thyroid nodules, a thyroid ultrasound can check them out.

    Do yourself a favor....get the book "Thyroid for Dummies" by Dr. Alan Rubin and bone up on all things thyroid. It is empowering to know what to expect and how to tell if you are receiving proper treatment. Dr. Rubin's book is up-to-date and written in easy to understand, plain English with minimal medical jargon. Informed, educated patients fare much better with this disease.

    Good luck!
    __________________
    Dx Graves 4/99, tx w/Tapazole & Atenolol - Remission 7/03; Relapse 1/06, back on Tapazole, remission & off meds again 11/06.

     
    Old 04-13-2004, 11:45 PM   #3
    GracesMomMom
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    Re: Graves diagnosis?

    Thanks K9, I have the book, I've read it. I've done so much reading sometimes I'm an expert on the topic - depending on if my brain is functioning or not. I don't remember that part, which isn't so surprising considering I can't remember my own phone number sometimes anymore. I've had the antiglobulin test and it came back negative. The other tests are outside the realm of my pc dr's knowledge. He'll be educated soon. I'm going to request a referral to an endo when I see him Thursday if he doesn't suggest it, which I'm pretty sure he will. He's pretty straightforward about what he does and doesn't know. And he's willing to educate himself when needed. Thanks for the info.

     
    Old 04-14-2004, 09:57 AM   #4
    nymidget
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    Question Re: Graves diagnosis?

    Please Help Me I Am New On The Boards And Need Some Information On Graves Of The Eyes I Have Had Ct Scans Mri And Scans Of The Orbit Of The Eyes It Is Confirmed That I Have Graves Of The Eyes The Eyes Are Bulded Out To The Top Of My Eye Brows And Hert I Have Double Vision And Cant See From Side Vision I Have Been Put On Predisone For 7 Wks Swelling Went Down But Stoped It And Swelling Came Back Have Been On Eye Drops Since Jan Of This Year The Name Is Acular .5 And Have Been Told That Is Has To Take Its Course I Have Had Graves Since July Of 2003 And My Question Is If Any One Else Is Going Through This Please Let Me Know How Your Doctors Is Treating You All Information Would Be So Helpful To Me I Have Seen 3 Eye Doc Now And Will Be Seeing Another One This Wk Again To Find Out What They Can Do For Me Please Am Desperate To Find Some Answers Thank You Please Respond

     
    Old 04-14-2004, 11:04 AM   #5
    Angel77
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    Re: Graves diagnosis?

    Just an FYI on inheriting Grave's disease. You don't have to have a family member with actual Graves' disease...just someone with an autoimmune disorder. My endo informed me of this when the only significant family member with a problem I could find was a grandmother with lupus and RA. He told me that it predisposes us to any form of autoimmune, your body just "picks" it's poison, so-to-speak.

    As far as my diagnosis...I started with blood work, then a RI uptake scan and one where I laid on a teeny table for what seemed like forever as this thing rotated around me for a picture of my throat. I guess, from what I remember (I was 19 at the time and had a toddler running around) it was to see if there were toxic nodules or something along those lines. Then I started the beta-blockers and heart meds until I did the radiation and for a short time afterwards. The worst part about the PTU was how nasty a taste it left in my mouth. I thought it was just the meds sitting in my mouth so I bought the empty capsules to put them in and that didn't help either. Found out later it was after it got in my blood stream and there was nothing I could do about it. It was awful.

    The radiation wasn't too bad. I think the worst part was the fear of what the radiation was going to taste like. From what I gather, there are also pill forms...I got the liquid form. I was imagining this glowing pink junk that was going to taste as bad as it sounded. It actually wasn't bad. It tasted like stale water. The funniest thing was how they told me how safe it was and then I walk into a room with a tech, covered in a lead outfit and they pull it out of this lead container and it's encapsulated in another 2" thick lead container!!! I about died! I thought it was going to kill me....finally, several years later I learned that the reason for all the lead wasn't for it's dangers in that dose, but to protect those who are around it all the time! Wish someone would have told me!

    As we all know, Graves' tends to aggrivate our panic! That was the last thing I needed! I thought I was going to go home and die! When it didn't happen I wasn't sure what to think! Then I got a book on it and it explained more to me than anyone ever had. Thank God for that book. It also helped many others that I have encountered since then. After having it for so long, you can almost "see" it on other people. I worked retail for a while and "diagnosed" about a dozen customers in a couple years time. They had the little signs...the head bobbing, the funny look in the eyes, the tremors in their hands, hair thinning on top....just the Graves' look. It was funny, they'd come back and wonder how the heck I knew it...You'll probably find you have the same experience.

    Anyway....started to ramble..tends to be my typical response though...blame it on the blonde, the brain damage, the now hypothyroid or the narcolepsy...your choice!
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    Old 04-14-2004, 09:28 PM   #6
    nymidget
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    Question Re: Graves diagnosis?

    Can Some One Out There Help Me And Let Me Know What The Doctors Are Doing For You With The Graves Of The Eye I Posted Already And I Am Desperiate To Find Some One Who Is Going Through What I Am Gone Through Several Doctors Now And Its A Waiting Game And In This Waiting Game My Eyes Are Getting Worse Bulding Out And Very Swollen Please Read My Previous Thread And Any Info Would Help Me I Am On Armour And Have Been For 8 Months Now I Am So Tired All The Time And Doc Raised My Armour Up 4 Wks Ago And Nothing Has Changed Please Help There Has To Be Someone Out There That Is Going Through What I Am Any Info Will Help Thank You

     
    Old 04-14-2004, 10:33 PM   #7
    GracesMomMom
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    Re: Graves diagnosis?

    NY,
    Sorry no one has responded yet. I've been pretty out of it the last couple of days. Welcome to the board. I also have bulging eyes, but they aren't as bad as yours sound. Mostly they only protude a little, with a couple of episodes every once in a while of worse protrusion. Quite frankly, you're scaring me . What do I know about GED? I'm pretty sure I read in Thyroid for Dummies (by Alan Rubin, MD) that treating the graves disease with anti-thyroid meds will also treat the ged. He goes on to say that eye drops are used to treat the inflammation, steroids are used to reduce immunity. "other drugs" can be used to suppress immunity as well. Severe cases can be irradiated. And as an extreme measure, surgery can remove bone from the orbit, allowing more room for the swelled tissues. He also says that the doctor will remove the thyroid in order to remove the body's mistaken "need" for the antibodies. Fewer antibodies, less to affect the eye muscles.

    You're being treated with Armour. Can you post your most recent lab results? The Free T3 and Free T4, TSH, and antibody tests are the most important. Include the laboratory ranges. Being so tired (oh I FEEL for you), your replacement hormones probably aren't at the right level. Have you had your thyroid removed or have you taken Anti-thyroid? Since you're on Armour, I think you're probably HypoT at the moment. I'm not an expert and there are others who are more likely to be able to give you appropriate advice. Some of these people are amazing. You might repost your original questions outside of this thread. Some of them might not be reading this one. I'm definitely willing to listen and chat with you though.

     
    Old 04-15-2004, 11:38 AM   #8
    Angel77
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    Re: Graves diagnosis?

    I don't know if you're case is similar to mine, but I never got better because after all was said and done I had narcolepsy on top of it all...so the fatigue was a constant, they just never believed me. So I switched doctors. It was about 4 years after the dx of Graves' and 2 years after having my TSH at normal levels. Mine was caused by a brain injury, which subsequently causes fatigue as well!

    I guess I just wanted to make dang sure that I had enough causes for the fatigue, HUH???

    I don't know anything about the eyes, as that was one of the complications that I managaged to escape. I'm sorry that you're having such a hard time. I know how scary it is and confusing. But I know that the great people on this board have a ton of knowledge to share with you.
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    Old 04-16-2004, 11:14 PM   #9
    nymidget
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    Question Re: Graves diagnosis?

    Sorry I Have Not Got Back With You All With In 2 Days I Have Seen 4 Doctors On The Graves Of The Eyes A Ophthalmology Eye Doctor I Wanted A Second Opion On The Doc Who Was Treating Me Now Which Is Very Nice And Goes Out Of His Way For Me Now But Told Me To Get A Second Opion So I Did The Other Doc I Knew From 30 Yrs Ago That Did Surgury On My Twins Eyes And Took A Chance On Him So I Did He Was Very Foward With Me And Told Me What Was Going On Like I Was Told By The Doc I Am Seeing Now Graves Of The Eye Is Not Curable They Can Make You Feel Comfortable But Thats It It Takes 1 Year Before You Will Know If It Ever Stableizes Then If It Does You Can Get Nerve Damage Of The Eye Which Means That You Will Always See Double And Ladatuide They Have Not Said Yet There Is Nerve Damage They Wont Know For 1 Year Which Is Coming Up In July And If That It Stablies In The Mean Time I Have To Have Premisms In My Glases To Help Me See Stright And Wait This Game Out It Is A Diease That Is Unclureable And Doc Are So Frustied Over It Excuss Me On My Spelling I See Double Any Way Graves Mom Mom You Asked Me For My Thriod Bllod Work Well I Dont Have The Latest One The Doc Does Not Like To Send Them Out To Me And Have To Wait To Get Them On My Visits And I Go To Her April 23 But Have The Results From Jan Of This Year Here Goes Tsh 0.58 T4 0.8 T3 3.2 Does This Help You To Read Them Please Help Me Understand This I Took The Radioactive Iodine Pill Back In 2002 Of Nov I Then Was On Synthriod For 16 Months The Doc I Had Then Was Not Good And Had Me Every 6 Wks Change My Pills I Was Very Hypo And He Did Not Understand How I Felt Coild Care Less It Took Me 6 Months To Get Into Another Thriod Doc And She Understood In My 2 Visits I Had With Her But Is Not Keeping Up With My Blood Work I Am Now On Armour 90 Mg I Have Been On Them Since Oct Of 03 Did Very Well Until March Of This Year And Then I Went To Hypo And She Raised Me Up To 1 And One Quarter Pill Every Other Day The Eye Doc Said To Get My Thriod Adjusted Any May Be The Graves Will Taper Off Dont Know Please Help Me And I Know This Is A Long Thread But Need Alot Of Help For Anyone That Has Gone Through This Thanks So Much For The Suport

     
    Old 04-17-2004, 06:36 AM   #10
    K9Mom
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    Re: Graves diagnosis?

    NYMidget, can you please try to NOT capitalize the first letter in every word? It makes it hard to read.

    OK, so you had RAI right? It is well known that RAI can trigger or worsen the eye disease. Were you given Prednisone to take as a preventative during and after the RAI?

    As far as double vision, there are press on prisms that your ophthalmologist can give you that are put on your glasses that can correct the double vision. I do not recommend that you get the prisms ground into the lenses of glasses as it's quite possible that your vision will change over time and therefore your prism will need changing too. The stick on prisms are cheaper too.

    Some things you can do to help your eyes right now are:

    1) Raise the head of your bed about 6 inches - this will help prevent overnight swelling of the eye tissues

    2) Use sterile, preservative free moisturizing drops - preferably the ones that come in the individual vials.

    3) At night, right before bed, use sterile, preservative free moisturizing oinment like Lacri-lube or Refresh PM.

    4) Start taking Flax Seed Oil supplements. Many have found that this helps their eyes.

    5) Alternating warm and cold compresses may also offer some relief.

    If your interoccular pressures are high then your Ophthalmologist would prescribe some prescription eye drops for that. You must make sure that you are seeing a true Ophthalmologist - preferably one with experience with TED (Thyroid Eye Disease) as it is not a common ailment and many have no clue what to do with it.

    One of the BEST things that you can do for your eyes is to get your thyroid hormones in the normal range FOR YOU and keep them normal and stable. Both hypo and hyper can and will aggravate the eye disease.

    Good luck!
    __________________
    Dx Graves 4/99, tx w/Tapazole & Atenolol - Remission 7/03; Relapse 1/06, back on Tapazole, remission & off meds again 11/06.

     
    Old 04-17-2004, 07:23 AM   #11
    pickapro1999
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    Re: Graves diagnosis?

    Quote:
    Originally Posted by nymidget
    Can Some One Out There Help Me And Let Me Know What The Doctors Are Doing For You With The Graves Of The Eye I Posted Already And I Am Desperiate To Find Some One Who Is Going Through What I Am Gone Through Several Doctors Now And Its A Waiting Game And In This Waiting Game My Eyes Are Getting Worse Bulding Out And Very Swollen Please Read My Previous Thread And Any Info Would Help Me I Am On Armour And Have Been For 8 Months Now I Am So Tired All The Time And Doc Raised My Armour Up 4 Wks Ago And Nothing Has Changed Please Help There Has To Be Someone Out There That Is Going Through What I Am Any Info Will Help Thank You
    HI, MY NAME IS KRIS AND I HAVE THE GRAVES EYE DISEASE. I KNOW YOU ARE UNCOMFORTABLE AND TIRED BUT JUST HANG IN THERE LIKE THEY SAID THINGS WILL GET BETTER. I GOT THE EYE DISEASE OVERNIGHT AND IT WAS COMPLETE AND I WAS LOOSING VISION WITHIN A FEW MONTHS AND HAD TO HAVE 7 SURGERIES AND I AM STILL SEEING DOUBLE. NOT ALL THE TIME BUT I WORK HARD TO SEE. FROM WHAT THE EYE DOCTOR SAID LAST WEEK I HAVE ONE EYE POINTED UP IN THE AIR AND IT IS A CONTINUAL STRUGGLE FOR ME TO SEE ONE, SO THIS GUY IS GOING TO PUT A PRISM IN MY NEW GLASSES. ARE YOU HAVING TO USE THE STICK ON PRISMS? THEY ARE AWFUL, I COULDN'T USE THEM THEY WOULDN'T STAY PUT. THIS WILL BE SOMETHING TO GET USED TO AFTER 5 YEARS OF DOING IT ON MY OWN.
    THE THYROID PROBLEM THEY DID NOT DIAGNOIS UNTIL THIS YEAR AND I AM HYPO NOT HYPER SO WE HAVE A WHOLE NEW BALLGAME TO PLAY. I DID NOT HAVE A THYROID PROBLEM TO DEAL WITH WHEN I WENT THROUGH THE EYE THING. ALSO AN EYE SURGERY IS NOT HARD TO GET OVER, RECOVERY TIME IS SHORTER THAN MOST OTHER SURGERIES.

    I DIDN'T EVEN CONSIDER THE STEROIDS BECAUSE I BELIEVE IT WAS STEROIDS THAT KIDDED MY EYE DISEASE OFF AND MADE IT SO SEVER.... BUT OF COURSE I CAN'T GET THE DOCTORS TO AGREE WITH ME. YOU KNOW THEY KNOW YOU BETTER,THAN YOU DO...... WOULDN'T YOU THINK IT WAS STRANGE THAT YOU TOOK THE LAST STEROID PILL FROM ONE OF THOSE 6 DOWN TO ONE THINGS AND THE NEXT MORNING YOUR EYE WAS BULGING AND YOUR HAIR ALL BROKE OFF TO 1/2 LONG. EXACTLY!!!!!!!!!!! I AM NOT SAYING THAT I WOULD NOT HAVE GOTTEN THE EYE DISEASE, I AM SAYING IT WAS SO SEVER BECAUSE OF MY SENETIVITY TO STEROIDS.

    OBVIOUSLY THEY DON'T HAVE YOUR MEDS RIGHT OR YOU WOULDN'T BE EXPERIENCING SO MUCH FATIGUE. OR YOU HAVE SOMETHING ELSE ALONG WITH IT SUCH AS CRONIC FATIGUE. ARE THYROID RELATED PROBLEMS THE ONLY AUTOIMMUNE PROBLEMS YOU HAVE?

    TALK ABOUT DOCTORS I WENT TO 15 DOCTORS IN 12 WEEKS AND RAN A BUSINESS TOO. WHAT A RUSH!!!! DIDN'T KNOW WHETHER I WAS COMING OR GOING.

    I DON'T KNOW WHERE YOU ARE AT BUT I WOULD FIND A HOSPITAL OR DOCTOR THAT DEALS WITH THIS DAILY. I WENT TO THE U OF M IN MICHIGAN. ALOT OF DOCTORS WILL TELL YOU THEY CAN FIX SOMETHING AND THEY DEAL WITH IT DAILY IN A PRIVATE PRACTICE BUT WHAT I FOUND WAS THEY WANT TO WORK ON YOU FOR THEIR OWN EXPERIENCE AND REALLY HAVE NO IDEA WHAT'S GOING ON. IF SOME OF THE BEST EYE SURGEONS IN THE WORLD COULDN'T GET IT JUST RIGHT WHAT MAKES YOU THINK SOMEONE IN PRIVATE PRACTICE CAN. NOW THAT IS JUST MY OPINION BUT AFTER GOING THROUGH THIS I WOULD NOT RECOMMEND SOMEONE IN PRIVATE PRATICE.

    YOUR SIGHT IS VERY IMPORTANT AND SO IS YOUR THYROID GO TO PEOPLE YOU TRUST AND BELIEVE IN AND HAVE THE EXPERIENCE TO GET YOUR RESPECT.

    I KNOW I SOUND VERY AGGRESSIVE BUT THAT'S FROM YEARS OF EXPERIENCE WITH DOCTORS THAT THINK THEY KNOW MORE ABOUT YOU THAN YOU DO. YOU KNOW YOU THE BEST OF ANYONE AND DON'T LET THEM CONVINCE YOU ANY OTHER WAY.

    IF I CAN HELP YOU IN ANYWAY PLEASE DO NOT HESITATE TO POST TO ME ON THE BOARDS.

    WHEN I HAD MY EYE PROBLEMS THEY TOLD ME IT WOULD TAKE 3-5 YEARS BEFORE ANYTHING COULD BE DONE. GLAD TO HEAR THAT HAS CHANGED TO A YEAR.

    SORRY YOU ARE HAVING SUCH A HARD TIME I WISH I COULD HELP YOU MORE BUT I KNOW PRAYERS WILL HELP SO I WILL BE PRAYING FOR YOU.
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    Old 04-17-2004, 12:31 PM   #12
    K9Mom
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    Re: Graves diagnosis?

    Just want to add that the eye disease (called Graves Ophthalmopathy or Thyroid Eye Disease)...it is caused by antibodies that attack the tissues of the eye. This is an immune system issue, therefore the use of steriods is one of the few things that will help with the inflammation as the steroids lower the immune system response. However, once the steroids are stopped, if you are still in the "hot phase" the inflammation will return.
    __________________
    Dx Graves 4/99, tx w/Tapazole & Atenolol - Remission 7/03; Relapse 1/06, back on Tapazole, remission & off meds again 11/06.

     
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