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    Old 02-10-2004, 04:32 PM   #1
    Miriam7
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    Lightbulb Just diagnosed (I think) with Graves and I don't have a clue...

    Hello...

    I'm a forty year old female. I haven't had my period in 3 and 1/2 months...so I went to my doctor. She did a bunch of blood tests and told me today that I probably have Graves disease. She did a regular thyroid test and also a Free T4 (I think it was called that). Apparently the Free T4's showed that I have hyperthryoidism or Graves disease and my TSH was very low.

    I also have fibromyalgia, and I guess I thought my symptoms were related to that. I have had a terrible time sleeping and have red streaks on my shins (guess this is from the Graves disease?). I am not having any heart rate problems although I AM having hot flashes on and off. (thought I was going through menopause. )

    She has scheduled me for a Thyroid Iodine 123 Up Take Scan on the 27th of this month. She explained it a bit to me, guess I have to take some radioactive pills or something on one day, come back the next day, get injected with some dye and then have some scan.

    Then she said that this is usually treated with either using radiation to destroy my thyroid completely or else having surgery to remove it. Then I'll have to take thyroid replacement pills the rest of my life.

    Does this sound like it is the normal course of action?? Sheesh...I went in to the doc thinking she'd tell me that I have started menopause, and now this. I'm ok with it, just don't have a clue as to what this is. I'd never heard of Graves disease before today.

    Any info would be appreciated! Thanks.

     
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    Old 02-10-2004, 05:27 PM   #2
    Kristi91
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    Re: Just diagnosed (I think) with Graves and I don't have a clue...

    Quote:
    Originally Posted by Miriam7
    Hello...

    I'm a forty year old female. I haven't had my period in 3 and 1/2 months...so I went to my doctor. She did a bunch of blood tests and told me today that I probably have Graves disease. She did a regular thyroid test and also a Free T4 (I think it was called that). Apparently the Free T4's showed that I have hyperthryoidism or Graves disease and my TSH was very low.

    I also have fibromyalgia, and I guess I thought my symptoms were related to that. I have had a terrible time sleeping and have red streaks on my shins (guess this is from the Graves disease?). I am not having any heart rate problems although I AM having hot flashes on and off. (thought I was going through menopause. )

    She has scheduled me for a Thyroid Iodine 123 Up Take Scan on the 27th of this month. She explained it a bit to me, guess I have to take some radioactive pills or something on one day, come back the next day, get injected with some dye and then have some scan.

    Then she said that this is usually treated with either using radiation to destroy my thyroid completely or else having surgery to remove it. Then I'll have to take thyroid replacement pills the rest of my life.

    Does this sound like it is the normal course of action?? Sheesh...I went in to the doc thinking she'd tell me that I have started menopause, and now this. I'm ok with it, just don't have a clue as to what this is. I'd never heard of Graves disease before today.

    Any info would be appreciated! Thanks.
    Hello I too had Grave's Diease. After almost 2 years of trying to get it under control with meds. I opted to have the surgery (which was Jan 28) The surgery was not too bad . I am glad I chose to have the surgery over the iodine pill b/c on one side of my thyroid was calcified( hard like rock) So I feel if I had done the pill, eventually I would have had to have it out anyway. I also had multi nodules on the whole gland and two larger ones measuring 1.7cm and 1 cm. What is scary is I had a thyroid ultras. done about 2 years ago and it showed I had two larger nodules measuring 1.4 cm one on each side. Either the scan was not accurate or my nodules grew on one side and decreased on the other Just type in Graves Diease in your search engine, you can find alot of useful info there. Hope this has helped you!
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    Old 02-10-2004, 05:54 PM   #3
    K9Mom
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    Re: Just diagnosed (I think) with Graves and I don't have a clue...

    Hi Miriam,
    I too have Graves', diagosed in 1999. There are 3 treatment options for Graves, and I'm quite shocked that your doctor did not mention anti-thyroid medication to you as a treatment option.

    The best thing you can do for yourself right now is to study up on Graves and the treatment options. The book "Thyroid for Dummies" by Dr. Alan Rubin is an excellent crash course on all things thyroid! I highly, highly recommend it for all thyroid patients, but especially Graves' patients.

    I feel that all Graves patients should be given anti-thyroid meds to get their thyroid levels under control first....so we can THINK straight and have a clear head to evaluate our treatment options. When we are hyper our heads are spinning and we are impatient. I know that I could not have made an "informed decision" in that state of mind. I was borderline crazy with hyper and could not begin to wrap my brain around what all was happening to me.

    I am in remission now, after having taken Tapazole (one of the anti-thyroid medications) for a little over 4 years. I'm extremely lucky that I found an Endocrinologist that would allow me to stay on the meds that long...most doc's impose a 1-2 year time limit (where they got that limit from I have no idea...no literature I've read has ever said that we cannot stay on the meds indefinitely).

    I would advise you to get the book I mention....don't waste your money on any other thyroid book....THIS is the BEST for learning about the disease and the treatment options for Graves. Try your best to be patient. There is no quick fix for Graves, even after you remove or kill the thyroid gland, you still have Graves because you still have the antibodies in your blood that causes Graves. The ONLY hope for remission of the disease is the anti-thyroid meds, which act as a mild immunosuppressant and actually lower the antibody levels (in my case, eliminated the antibodies altogether) while it also lowers your thyroid hormone levels.

    It's a tough road ahead of you, but if you arm yourself with information you will fare much better through this ordeal. Best of luck to you.








    Quote:
    Originally Posted by Miriam7
    Hello...

    I'm a forty year old female. I haven't had my period in 3 and 1/2 months...so I went to my doctor. She did a bunch of blood tests and told me today that I probably have Graves disease. She did a regular thyroid test and also a Free T4 (I think it was called that). Apparently the Free T4's showed that I have hyperthryoidism or Graves disease and my TSH was very low.

    I also have fibromyalgia, and I guess I thought my symptoms were related to that. I have had a terrible time sleeping and have red streaks on my shins (guess this is from the Graves disease?). I am not having any heart rate problems although I AM having hot flashes on and off. (thought I was going through menopause. )

    She has scheduled me for a Thyroid Iodine 123 Up Take Scan on the 27th of this month. She explained it a bit to me, guess I have to take some radioactive pills or something on one day, come back the next day, get injected with some dye and then have some scan.

    Then she said that this is usually treated with either using radiation to destroy my thyroid completely or else having surgery to remove it. Then I'll have to take thyroid replacement pills the rest of my life.

    Does this sound like it is the normal course of action?? Sheesh...I went in to the doc thinking she'd tell me that I have started menopause, and now this. I'm ok with it, just don't have a clue as to what this is. I'd never heard of Graves disease before today.

    Any info would be appreciated! Thanks.
    __________________
    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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    Old 02-10-2004, 06:53 PM   #4
    HypoMom
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    Re: Just diagnosed (I think) with Graves and I don't have a clue...

    I too have Grave's Disease. Diagnosed and treated March 1995. I was not given any option other than radioactive iodine. The Grave's caused me to have panic attacks and I was deperate for relief so I was not up to searching out other options at the time. Unfortunately I was not referred to an endo, but a radiologist. Hmm, wonder why the only option was RAI. 10 weeks post RAI they started me on Synthroid without measuring my levels and when they finally did measure my levels, they only measured TSH. If you've had Grave's treated with RAI, I found out later, TSH is not an accurate measure so soon after treatment.

    Long story short, I was even more hyper than before the treatment due to way too much synthroid. I ended up leaving my GP and finally found an endo who would read all the articles I faxed him and work with me until I felt better regardless of the labs. I never really felt good until I switched to ARmour and even then it has been a struggle to keep my levels even.

    Our theory is they underestimated my RAI dosage and so what is left of my thyroid periodically goes into overdrive which causes me to go a little hyper and then I get a little more hypo.

    It has all been very confusing. I thing the anti-thyroid drugs would be a nice way to start in hindsight. At least until you can feel well enough to make an informed decision.

    HypoMom

     
    Old 02-10-2004, 08:08 PM   #5
    Miriam7
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    Re: Just diagnosed (I think) with Graves and I don't have a clue...

    Thanks for your responses everyone. I'm so tired right now...been reading and reading and reading on this Graves disease. I'm going to bed, but I wanted to thank all of you that posted a response. I DO appreciate it!

    Last edited by Miriam7; 02-10-2004 at 08:09 PM.

     
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