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    85,652 members • 100,583 posts

    Graves disease hyperthyroidism advice

    This is my first post and like many I am looking for advice. I was diagnosed with hyperthyroidism in January 2014 & went on to be diagnosed with graves disease a couple of months later on Good Friday when I first saw my endo. Since then I have been on various doses of neomercazole & beta blockers. I have been on 20mg neomercazole for the last 5 months & had come off the beta blockers & all was well until about 3 weeks ago when I fell ill & ended up on antibiotics & steroids. I noticed then that my heart rate was creeping up again & I actually took a beta blocker on 3 or 4 days where the rate was up at 110+. I had a check up with my endo today & it turns out I'm hyper again. I hadn't put 2&2 together as I had put the heart rate down to the medicines as both mentioned increased heart rate as a side effect. I was really surprised to hear my levels were out of whack again & of course my endo started talking about RAI or surgery. For now he has increased the neomercazole to 30mg (15 twice a day) & I'm back on 80mg of beta blockers. I have to have bloods done every 6 weeks & go back to the endo in September. He made it clear that if my levels don't stabilize within 2 years they will not stabilize with medication & I will have no choice but to have either RAI or surgery. I know both have risks & I'm really not keen on RAI as I have young children (one with autism & the other suffers with anxiety) & I would do all the running around after them as my husband works away.

    I guess I'm looking for input from anyone who has been in a similar situation.

    Also does anyone have any dietary recommendations, can what we eat/drink help? I have seen lots of books about food & thyroid disease but don't know if any are good/bad/indifferent so if anyone has had any success and can recommend anything.

    Thanks for listening.

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    17 Replies
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    I am sorry you are in a predicament again but someone who has had Graves will respond.

    I have hypothyroidism so cannot give advice. I do know that RAI or surgery is the last choice.

    I am also sorry you have not much support at home as your husband is working away and you've to look after young children which is very tiring particularly when you're unwell.

    Reply

    Firstly i trust you do not smoke

    2ndly avoid RAI like the plague

    surgury is better but be very sure you have a cast iron guarantee they will treat you with NDT afterwards based on any hypothyroid symptoms not on blood tests

    because after Graves Disease your body becomes so sensitised to such high levels of thyroid hormone you will not be able to cope on so called "normal "levels

    (Very old swedish research which they have forgotten )

    My husband has been through what you are suffering and after surgury suffered 6 years of hell sliding into myxodeama madness because they failed to remember thae swedish research

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    Thanks reallyfedup123. I don't smoke & am going to hold out as long as possible against rai or surgery. I'm hoping if I can use a diet of hyper friendly foods and/or supplements it might help keep my levels under control.

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    Any guaranteed hints for myxodema reallyfedup123?

    I've had it on my lower legs for 4 years now, & is now driving me nuts every night.

    I've just ordered a "mattress cover," which will be long/wide enough for my shins, which contains a gel inside, that never gets warm or hot, but stays cold all the time. I almost can't wait to receive that . . . .

    however, it's not going to be a cure, so any advice you have will be most welcome.

    One thing I am going to do, very soon, is ring the receptionist at the largest doctor's surgery here, ask her to find out which of their many doctors knows a cure for myxodema, then ring me back please, "because I've already been to 4 doctors & they didn't only not know anything, but all 4 of them changed the subject!"

    The endo I first went to, asked me which particular symptom brought me to him. My reply was the dark pinkish mark that was forming on my leg. His reply? "Oh, I've never seen one of those before!"

    Reply

    What you are talking about with your shins is different ...i cant thinkmof its real name ATM give me time

    Reply

    Sorry to hear of your troubles. My wife was diagnosed with graves in her 40's and her doc in the states gave her no choice in the matter about RAI or surgery. She was given RAI and has been on levothyroxine since. She could have had her thyroid reduce by surgery leaving some thyroid. Levo has its side effects from the synthetic chemicals. My wife takes 40mcg of beta blockers as well which have helped her migraines. As for foods have you any gastro issues? If you do, have you thought about a Gluten Free Diet?

    reallyfedup123 has a good point and has more knowledge than I. Smoking has its issues as the heavy metals in cigarettes can also affect the thyroid.

    Wish you well and hope you get to the root of the problem quickly.

    Reply

    Hi oldsoldier thanks for the reply. I don't have any gut problems & don't really want to go gluten free especially as it's getting some bad press lately. Hoping to just adjust my diet a little in order to hopefully see some benefits in my levels & keep away from rai or surgery.

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    I support you in your decision. Sometimes small changes can help to get the answers you need I wish you well.

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    Thanks oldsoldier same to you & your wife :)

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    Hi

    I have Graves I take L Carnitine, Selenium, Vit D3 Vit B Bugleweed and when I am feeling stressed Lemonbalm.

    The L Carnitine will help you a lot as will the bugleweed. Also there are vegetables that can make things worse avoid fish. A lot of people have amazing results with the paleo diet. I haven't tried that yet as my bloods are returning to normal.

    RAI is not an option for me and neither is TT however for some people it has helped.

    Thyroid disease is a bit like shoes not everyone is the same size.

    You could ask to try PTU although many Endo's don't like it. What I would say to you is this look at the risks with both RAI and TT because no-one will tell you according to the doctors you will be fine. Graves is an autoimmune disease and if it does not have the thyroid to attack it can attack elsewhere. Please before you make any choices do lots of research and ask lots of questions.

    Good luck

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    Thanks elayneg. Plenty for me to look into there. Thanks for taking the time to respond.

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    My pleasure do not be pressured into anything this is your body and they are providing you with a service, if you are not happy change it, Endo's are not gods.

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    I have Graves Disease the second time in 22 years. This time around I decided to support my body with Natural Therapies and I feel a lot better. Turmeric for inflammation is a must. Magnesium and Hawthorne for the heart, Selenium is necessary in both hypo and hyper Thyroid conditions, and also helps with swelling around eyes. A herbal mix of Bugleweed/Motherwort/Lemonbalm a few times a day, as well as Vitamin D. Also, get a Hair Mineral Analysis done to find our your mineral levels. Graves gobbles up Calcium and Copper. That did not cure me, however, has made my life a lot more comfortable. I will now start on a low dose of Neo-Mercazole. Another thing is now that I really need to get to the bottom of it. I want to know why it raised its ugly head again after 22 years free of it.

    What stresses me out so much that my system cannot handle it. I hope this helps.

    Wishing you well on your journey!

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    Thanks Namaste12. Hope you manage to get back to remission soon.

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    I have the same thing u do for 22 years. I have never stopped my meds. I dont think thats good. Do u have high blood pressure?

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    Hi, no thankfully I do not suffer with high blood pressure.

    Just as an update I have been meds free for 9 months but my levels are gradually going back to where they were and I am going for a checkup on Tuesday and know I will be going back on meds. 😕

    Reply

    Sorry it took so long to respond time difference. I live in u.s.a. ur levels keep going up because ur doctor should keep u on ur meds all the time. My endo told me the thyroid is the engine to ur body. Some women never get over what we have.

    Reply

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