GD is hell

I remember being told by my doctor ' you have GD wendy , dont worry we can get it under control , and your not the worse case I have seen you will be fine '. That was 3 years ago , I have learnt alot about GD since then , It affects every one differently ? what might work for one person will not work for another '. of course DRs do not see this . infact I have learnt that Drs do not no much about GD at all, Endros are not much better ( if you learn all you can about your illness and arrive at the endro all cluded up , they dislike that even more . I used to trust Drs now I dont because I have learnt they twist the truth , they can make you feel insane and do not treat the syptoms if the blood tests say ' your normal'.I remember when I asked to be tested for GD my doctor said ' oh ok just to put your mind at rest i will test you but it will be negitive' Of course it came back positive , a few months later fibro came along to join the party along with depression sinius problems , terrible pain ,anxiety I have got to know my illness ( i dont understand it but I know it and what it can do) When I go to the doctors with a symptom I know is thyroid related I am fully aware the dr will disagree and say 'its anxiety ' I always say ' that is what you told me before you tested me for GD remember dr ' he will carry on looking at my blood results ' well this says abc , I smile and say ' I dont care what that test says , I know how i feel and on it goes a constant battle I do not no of any other illness where you get treated with such disregard , but the battle will go on my friends . If you have syptoms but your test says normal even with a TSH of 0.02 that normal????? well may be for some but I no I need to have a TSH of 1.08 to feel normal , fight your corner do not be pushed about , forgotten about , carry on the battle for your self and other sufferers who will come after you xxxxxxxxxxxxxxxxxx

7 Replies

  • what is GD?

  • Graves Disease

  • Are you on treatment for your Graves ? you should be seeing an Endocrinologist, hopefully not just your GP.

    If your Graves is not controlled have you been offered or thought about either surgery or RAI ?

    I first had Graves at about 12 years old so have a long history ! I have had both surgery and RAI and for me being hypo is 100% easier than dealing with Graves.

  • yes I see an endro Bantam , he told me a tsh of 0.2 was fine , as I pointed out that may be the case for some but not for me , I gave him a printed list of things a low TSH can do , so he told me to take 5 mg of carb a day for 6 months and then RAi he also added ' but it may make you go inderactive (really no!!!!) any thing has to be better than this , I was on carb for 18 months , They stooped it last november , slowly but surly my TSH has gone down and down my syptoms are returning and all he wants to talk about is the fact RAI could make me go underactive

  • Do you want RAI now ? you can tell him you do. I got fed up with the ups and downs and constant dose changes with Graves so I asked for RAI, I went hypo within 4-6 weeks, winner. I take Levo and haven't had any problems apart from one time they tried to reduce my dose, took a while to stabilise again but otherwise no probs.

  • I was refered last november , I have to wait another 6months he said , (unless i become very ill which does not think will happen??} So it seems i have to be very ill as i was when first had GD or just plod on with 5 mgs of carb . I expect your graves was quiet bad?? Did you ever go with out meds for a while , It is horrendous waiting for it to come back while they sit back , I have GD not just a overactive thyroid so people like us have the anti bodies ,I agree with you when I went underactive for a while a while ago I was so calm , much better to deal with . thanks so much for your advise xx

  • Seems crazy having to wait, maybe that is just your Endos quirky way of doing things !

    When I first had Graves in my teens I could never stay in remission for more than a few weeks so had partial surgery, was fine, no meds afterwards but when I was mid 40's it started up again, tried Carb again then block and replace but got fed up with all the hassle so opted for RAI and it was done fairly quickly, no waiting around for me to get worse.

    I would get in touch with him and say you can't wait another 6 months with your life on hold and if he won't play ball then ask your GP for a referral elsewhere.

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