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Thread: graves Disease

  1. #163

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    Hello all! Thanks for all your help
    I am totally confused though, with all the different terms - it makes my head hurt...I am on Neo-Mercazole, 10mg a day - I think that is carbimazole. At the moment, Im not sure what is worse, the symptoms from the drugs, or the symptoms from the graves. I have an appointment to see the specialist in another month, meanwhile, I have to have a blood test and give him a call. Im not too sure about my specialist though - I dont really think he is helping that much...Long story short, my dad had graves disease, no one wanted to do a thyroidectomy because they thought it wasnt big enough, when they finally did cut it out, it was growing internally, and much bigger than they thought. I know my thyroid has grown, I can feel it, and it restricts my swallowing at times. I mentioned all this to my specialist, and he said cant really tell without some test (I think it was a radioactive iodine test???) and he didnt even give me a referral to have a test!!! Really not sure about this guy????



    Anyway, Bathsheba, I think its great you're feeling good - I think you should tell your GP you upped your dose (even though Im sure you will!!)- the blood test will confirm whether or not its doing you good. And Im so thankful to hear you CAN breastfeed - such a big issue for me.

    Mamspice, thankyou so much for your encouraging words! I am so glad your baby was and still is doing well (and everyone's for that matter)

    Hellrazed, thankyou for your insights. I think I might email you direct and pick your brain!!! There is so much I need to learn about this thing. I hope all is well with you - it sounds like you had a really rough time over the last while. Please keep us updated on your recovery. Also, can you please let me know what a thyroid storm is (or am I just asking a really dumb question?!?!

  2. #164

    Join Date
    Apr 2008
    Location
    redbank plains
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    Hi Joey and welcome. I had to give up breastfeeding my little one, but my graves was affecting my milk supply and my baby had trouble gaining weight.

    All is good here. Mine seems to have gone into remission. I was naughty a couple of weeks ago and took myself off my tablets completely - they were messing with some other tablets i had to take for gyne reasons. Still feel ok time will tell - no doubt my doctor will give me a lecture if the levels increase again.

    Serene - glad to hear bubba is good. Not so good about your post op recovery. Hope things look up soon and that you get to finish your course

    Mammaspice - might you be pg? if i am reading your ticker right - congrats if you are

  3. #165

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    Jan 2010
    Location
    queensland
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    Hi everyone,

    I was diagnosed with Graves Disease when I was 17 after a serious car accident (almost 6 years ago now).
    I had a really hard time trying to get the levels right.. stupid thyroid just wouldnt co-operate. I had a Thyroid Storm 3 years ago and oh my gosh that was terrible! My heart rate was 160-180 and I felt like I was going to pass out any minute.
    Ever since the Thyroid Storm I could feel the palpitations all the time and felt nauses most of the time. Eventually the Thyroid was that enlarged that my specialist told me it was time to take the Thyroid out as it was starting to block my airway and I was having a hard time breathing!
    Had the Thyroidectomy on the 3rd of September 2009 and the operation was a success. The surgeon told me that i had "a VERY meaty Thyroid". All Parathyroid glands were saved.
    Since the operation I still havent been feeling too good. Ive been to the Emergancy Room thinking I was going to die but they just shrug me off saying nothing is wrong.
    I keep getting nauses, dizzy, get hot flushes, heart feels like its jumping around like crazy.
    They have just down my dose of Thyroxine because it was a little high so now back on 100mcg which is what I was originally on just after surgery. Calcium is good though.

  4. #166

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    Jan 2008
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    Hi Jas, Yes I am PG

  5. #167

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    Hi all.
    Thanks everyone for your insites - I have to say though, I have been getting really confused with all the graves disease terms being thrown around!!...I did reply a little while ago, but it didnt go through Dont know what happened there.
    Congratulations Mamaspice, you must be so happy!! I hope it all works out well for you. BTW, I am on Neo-Mecazole (carbimazole) at the moment - only 10ml (2 tablets) daily. Not sure whether I feel better on or off them though.

    Glad you are feeling well Jas, and I hope it continues to go well for you.

    Bathsheba, I know exactly how you feel. I am always forgetting things, and vague too...really vague. How did you get on at the doctors?? All good I hope.

    Hellrazed, I hope all is well after your operation - it sounds as though you had a hard time. Hopefully things will continue to get better for you as time goes on.

    As for me, I am reading through your comments about the help you are receiving, and I cant help but wonder if I have the right specialist. He is an endo, but Im not sure if Iam getting the right information. Dont get me wrong, he is a good doctor, but...long story short, my dad had graves when he was in his 20's, he was hospitalised with a heart rate over 190, and dramatic weight loss, he had previously had radioactive iodine treatment and the doctors refused to cut his thyroid out. Apon my mums insistance, they took it out and found it it was much bigger than they first thought - going down, not out. As Im sure you can imagine, I am afraid that this might be happening to me, so I had an ultrasound done, took it to the doc and he said he couldnt tell what was happening without the report (which wasnt with the films) and the only way to know for sure is a radioactive iodine (?) test, which he didnt even give me a referral to have. The reason why I am worried about it growing down, is because i have trouble swallowing sometimes, I choke on my food and I almost always feel it restricting my airways.

    Anyway, just wanted to know what everyone's thoughts were on this - any advice or comments welcome!!
    BTW, hellrazed, what is a thyroid storm? (or am Ishowing my ignorance to this disease???)

  6. #168

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    Hi all.
    Thanks everyone for your insites - I have to say though, I have been getting really confused with all the graves disease terms being thrown around!!...I did reply a little while ago, but it didnt go through Dont know what happened there.
    Congratulations Mamaspice, you must be so happy!! I hope it all works out well for you. BTW, I am on Neo-Mecazole (carbimazole) at the moment - only 10ml (2 tablets) daily. Not sure whether I feel better on or off them though.

    Glad you are feeling well Jas, and I hope it continues to go well for you.

    Bathsheba, I know exactly how you feel. I am always forgetting things, and vague too...really vague. How did you get on at the doctors?? All good I hope.

    Hellrazed, I hope all is well after your operation - it sounds as though you had a hard time. Hopefully things will continue to get better for you as time goes on.

    As for me, I am reading through your comments about the help you are receiving, and I cant help but wonder if I have the right specialist. He is an endo, but Im not sure if Iam getting the right information. Dont get me wrong, he is a good doctor, but...long story short, my dad had graves when he was in his 20's, he was hospitalised with a heart rate over 190, and dramatic weight loss, he had previously had radioactive iodine treatment and the doctors refused to cut his thyroid out. Apon my mums insistance, they took it out and found it it was much bigger than they first thought - going down, not out. As Im sure you can imagine, I am afraid that this might be happening to me, so I had an ultrasound done, took it to the doc and he said he couldnt tell what was happening without the report (which wasnt with the films) and the only way to know for sure is a radioactive iodine (?) test, which he didnt even give me a referral to have. The reason why I am worried about it growing down, is because i have trouble swallowing sometimes, I choke on my food and I almost always feel it restricting my airways.

    Anyway, just wanted to know what everyone's thoughts were on this - any advice or comments welcome!!
    BTW, hellrazed, what is a thyroid storm? (or am Ishowing my ignorance to this disease???)

  7. #169

    Join Date
    Jul 2005
    Location
    Rural NSW
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    Congrats mamaspice!

    Just quickly: got my result... my graves is "controlled"! yay! Seems i did the right thing upping my meds a bit... my main level was 14.... down from 26. Now I am back to 3 carbimazoles per day for 6 weeks and then another blood test to see what's happening... if it's good I may go down to 1 per day once again and see if i am in remission!

  8. #170

    Join Date
    Jan 2008
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    Just Coasting
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    Hi bathsheba! Thankyou I've got my that your next BT results will say you can lower your meds to 1 per day. Wouldn't that be great

  9. #171

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    Hi all.
    Thanks everyone for your insites - I have to say though, I have been getting really confused with all the graves disease terms being thrown around!!...I did reply a little while ago, but it didnt go through Dont know what happened there.
    Congratulations Mamaspice, you must be so happy!! I hope it all works out well for you. BTW, I am on Neo-Mecazole (carbimazole) at the moment - only 10ml (2 tablets) daily. Not sure whether I feel better on or off them though.

    Glad you are feeling well Jas, and I hope it continues to go well for you.

    Bathsheba, I know exactly how you feel. I am always forgetting things, and vague too...really vague. How did you get on at the doctors?? All good I hope.

    Hellrazed, I hope all is well after your operation - it sounds as though you had a hard time. Hopefully things will continue to get better for you as time goes on.

    As for me, I am reading through your comments about the help you are receiving, and I cant help but wonder if I have the right specialist. He is an endo, but Im not sure if Iam getting the right information. Dont get me wrong, he is a good doctor, but...long story short, my dad had graves when he was in his 20's, he was hospitalised with a heart rate over 190, and dramatic weight loss, he had previously had radioactive iodine treatment and the doctors refused to cut his thyroid out. Apon my mums insistance, they took it out and found it it was much bigger than they first thought - going down, not out. As Im sure you can imagine, I am afraid that this might be happening to me, so I had an ultrasound done, took it to the doc and he said he couldnt tell what was happening without the report (which wasnt with the films) and the only way to know for sure is a radioactive iodine (?) test, which he didnt even give me a referral to have. The reason why I am worried about it growing down, is because i have trouble swallowing sometimes, I choke on my food and I almost always feel it restricting my airways.

    Anyway, just wanted to know what everyone's thoughts were on this - any advice or comments welcome!!
    BTW, hellrazed, what is a thyroid storm? (or am Ishowing my ignorance to this disease???)

  10. #172

    Join Date
    Apr 2008
    Location
    Newcastle, NSW
    Posts
    47

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    Hi Joeyj, I am getting there slowly. VERY slowly, but I guess all the hassle is better than being dead. My weight gain has peaked at 118kg, and seems to be stabilised there. My endo is happy about that, because it means he has a platform to work from now. It seems like you really do need another endo. This one seems more about doing his job for the money and convenience of it than for using his talent to help someone who is actually quite desperately unwell, and Graves' is one of those things that makes people extremely ill! A tyrhoid storm is basically when its at the point where your levels are immeasurably high or fluctuating with alarming rapidity, making the disease all but uncontrollable. Its the point where they look at hospitalisation purely for monitoring and medication changes. If that happens, you generally need to have the thing removed within a couple of weeks, because RAI just isnt going to work fast enough, and the massive doses of drugs you will need are dangerous.
    Its pretty cool, you can actually induce it artificially with thyroxine Sorry I spend too much time on medical journals!

    Good hunting ladies!

  11. #173

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    Rural NSW
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    Seeing the doctor this week... feeling ok... last test was slightly raised. I'm taking 4 neo-mercazoles a day and if anything feel Hypo.

  12. #174

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    Apr 2008
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    Newcastle, NSW
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    hun... Prayin for ya xxx

  13. #175

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    update: good news, like I suspected my results were good. I only glanced at them but I think they went like this:

    T4 16.5
    T3 5.5
    TSH undetectable

    So the TSH is still a worry and means I am not in total remission... but I am euthyroid and it's controlled again. Down to 3 neo-merc a day again. Doctors still wants to radiate it though pffft.

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