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Thread: Wegener's and Graves disease

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    Default Wegener's and Graves disease

    Thought I would just ask and see if anybody has both of these, Wegner's and Graves disease.
    about a month ago my yearly wellness checkup labs showed my TSH was zero. Retook the blood work two weeks later and it improved to 0.01 my understanding anything less than 0.5 is problematic. and last year it was perfectly normal.
    my doctor had me take a nuclear test last week to see how fast my thyroid is absorbing and processing. the results from this has lead my doctor the believe I have Graves now too. luckily I don't have any ailments from this since its caught early but I have started treatment with Methimazole. I'm waiting on a phone call from an endocrinologist to get a 2nd opinion.
    the Graves is also an autoimmune disorder so I was curious if anybody else has had thyroid issues. I'm going to wait and see how long it will be before I can get in with the endocrinologist before I contact my Rhumy about this. I haven't looked into Graves too much yet but I'm going to either ask the endocrinologist ( if I can get in soon ) or call my Rhumeys office here soon and see if there is a chance that my Wegener's could be causing the issue, my C ANCA did come back with a low positive last fall.
    Dx'd December 2000

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    I have (had?) Graves Disease. I was diagnosed with it way before my Wegener's. I had the radioactive iodine treatment and have taken medication for it since. I've never had a doctor point out anything about having both, but I know Graves is an autoimmune disorder. My primary care doctor has been in charge of monitoring my thyroid, and my rheumy doesn't ask.

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    Magnolia
    I was diagnosed with Hashimottos Thyroidytis about 30 some years ago. My wegners, which was partial in the beginning, started in 2002. I was told that once you have an autoimmune disease,
    you can get another. Hashimotos consists of the thyroid attacking its own tissue.They just give you hormone replacement and I had no significant problems.When I started getting Wegeners
    symptoms my thyroid started to act up. Thought this might enlighten someone out there........

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    Yes...I know about Graves Disease I was also diagnosed with that way before WG I had the same treatment with the radioactive iodine about 40 years ago! I had the Graves Disease since I was in my preteens. I do take synthroid daily.

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    Thank you for the replies.
    what little I have read up on Graves I hadn't seen any mention of rheumatologists treating it but I figured you guys would know the answer.
    since starting the Methimazole this week I have to get re regulated on my warfarin dose as it counter acts it greatly I'm told.
    I guess I should say that I am lucky my Primary doctor that I have only seen for two years really likes to review my labs on a regular basis due to my past history so she caught this early enough she doesn't foresee anything other than when my thyroid finally tires out I'll be on thyroid replacement medicine. Not like most of use don't already take pills daily so whats one more right.
    Dx'd December 2000

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    I had Grave's disease and was treated 3 times with radioactive iodine until it became normal. Now I have diabetes and PGA

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    Thought I would just ask and see if anybody has both of these, Wegner's and Graves disease.
    Yes, sort of..... My GPA attacked my pituitary, which sent my TSH to zero. The url below is an abstract for the condition.
    Pituitary involvement in Wegener's granulomatosis. - PubMed - NCBI I am #24 according to my rheumy at the vasc center.

    Pituitary and thyroid issues are usually the domain of endocrinologists, so you might have to start seeing two doctors.
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

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    BarbNY So far my doctor hasn't given me the radioactive iodine as she feels we should give the methimazole a try first, or at least I get into an endocrinologist for a 2nd opinion. I'm in the pre diabetic range and have been losing weight, but now wonder if I have been doing it or just my thyroid acting up. either way I've got my fasting glucose down to 102.

    and vdub, what I understand my pituitary is ok. I haven't had the MRI or CT scan but did have a thyroid uptake scan where I took a iodine pill and had a nuclear scan done on my neck at 6 and 24 hours. but this will definitely be something I need to ask about. thanks for the link, I read over it real quick but will read it in detail tomorrow.
    and as far as seeing two doctors (actually 3 when count rheumatologist) that doesn't bother me much, when I got DX'd in 2000 for awhile I seen 5 doctors regularly.

    which brings me up to a different subject, I had a good decade of just blood pressure monitoring due to prior kidney involvement. my nephrologist retired in 2012 and told me to just see an internal med doctor that he referred me to in the town I live. and then if I should need more treatment she would send me back up to Des Moines. It's come to light that most offices only keep records for 7-10 years and then destroy them as allowed by law. I've figured out most of the doctors I used to see and the only one that has anything from my initial hospitalization is my pulmonologist. Even my Rheumy that I seen 15 years ago, and see again now doesn't have any old records. I am going up this Friday to pick up my records and I am hoping they will still have my lung and sinus biopsy results along with any possible labs from that time and my chest x-rays. maybe after I get these I'll be able to see if my Wegener's caused my TSH to be zero back then or not. but I don't ever recall anything about my thyroid being talked about.
    Dx'd December 2000

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    Default Re: Wegener's and Graves disease

    Hi Guys, i was just today dxed with Graves and started on methimazole, 30 mg a day. Ive read reviews and im so scared!!! Someone please tell me this med will make me feel better. I have felt like death for about 3 months. I miss you all, and think about you. You are always my go to with this crap. Thankyou!!!

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    Default Re: Wegener's and Graves disease

    I don't have Grave's, but I also don't have a thyroid, since it was removed 5 or 6 years ago. I would think the methimazole would work fine. I see it has the normal doom-and-gloom side effects listing, but that's more for the lawyers than you. If worse comes to worse, you can have the thyroid removed and go on levothyroixne, which I was put on after the thyroid was removed. It has caused no problems what so ever. So cheer up.... no worries. You might have a couple rough days until they get things stabilized, but generally issues with the thyroid are very treatable.
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

  11. Likes Pete, Masha, Dirty Don, im so blessed liked this post

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