Just received Graves' diagnosis, thinking radioiodine next, help!

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I had a thyroid scan and was diagnosed with Graves' disease yesterday! I've had hyperthyroidism in the past a few years ago and was treated with Carbimazole however this made me nauseous and eventually it made me actually sick a few times so I was put on Propylthiouracil. Eventually with a combination of Propylthiouracil and Thyroxine my T3 levels went back to normal and I was able to come off of all medication.

Then in late Spring, 2013, I started experiencing what I feared were over-active thyroid symptoms. I went to the doctor and they tested my blood and my thyroid T3 level was at the high end but they said they thought it was stress and I had to try stress management techniques. They gave me beta blockers for the palpitations but the sweats and emotions being all over the place continued so I went back to my own doctor who referred me to the Thyroid Clinic.

After a visit to the thyroid clinic I was sent for a thyroid scan yesterday and the doctor talked through the pictures taken of my thyroid explaining what a 'normal' thyroid should look like and that due to my age and gender etc (29 year old female) he was certain I have Graves' Disease.

The doctor explained that I really have two options which are Radioiodine treatment or surgery but as I have Graves' it's likely that they would have to remove most of if not all of my thyroid and I would be on Thyroxine for the rest of my life. With the radioiodine there's at least a chance I won't go hypothyroid and have to take thyroxine for the rest of my days.

I keep reading so much mixed information. The way i see it if I go for surgery then I'm resigned to being on Thyroxine for the rest of my life but with radioiodine there's a chance I won't have to be. I can't imagine what it'd be like not being able to be in the same room as my partner for 2 weeks but I guess in the long run it would be worth it.

I was wondering about any fertility issues and whether either radioiodine treatment or possibly being on thyroxine would affect my chances of having kids? It's not my primary concern right now but my partner and I do want kids in the future although not quite yet. I'm 29 so I'm aware that its something I have to consider.

Can anyone shed any light on things for me? I'm struggling to process everything especially since I was only diagnosed yesterday. I've been feeling so awful, just generally exhausted. I'm managing to keep going to work but that's about it, i go to work, come home, eat and sleep. I was wondering about other people and if they've managed to keep going with work / life as normal? I keep thinking about taking some time off work but then I think that realistically I'm not going to feel any better so wouldn't I end up off for ages. My brain is just a buzz of too many thoughts right now and I'm struggling to focus on anything.

Also I've been gaining weight recently which is really odd for me especially when my thyroid is overactive. Has anyone else experienced this?

Any help, advice, experiences welcome. It's a tough one because a lot of people don't understand how bad you feel because they can't see anything physically wrong with you. Thankfully I have a very supportive partner, family and friends so can't complain there but just feeling so bleh and eternally exhausted and my emotions are all over the place.

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12 Replies

  • Posted

    Hi I've just found out too that I have gd too,my throid is over active too,I'm too putting on weight again now that I'm on 5mg carbimazole ,not sure what the out come will be for me,no one in my family seems to have this problem .
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  • Posted

    Not to say I'm glad you're going through the same thing but I'm a little relieved to hear that I'm not the only one. I'm continuing to gain weight which is really getting me down. I've always been relatively slim and I'm currently the heaviest I've ever been at 10 and a half stone (145 pounds). I'm only 5'5 so this is at the heavier end of what I should be. But the hardest thing is trying to make yourself get up and get healthy food in and prepare healthy meals. At the moment it takes all the energy I've got to shove something in the oven.

    I couldn't stay on Carbimazole as it made me physically sick so I'm on Propylthiouracil which makes me nauseous but not sick. I'm currently looking into things I can try like cutting out certain foods and seeing if this makes a difference to my health and energy levels. It's all a bit of a minefield though.

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  • Posted

    I know what you mean.my weight has gone up to 10stone

    Now .im only 4ft11 . I can't let myself

    Get any heavier . It's the tiredness that getting

    To me more than anything else and the waking

    Up at night sweating too.not much fun getting

    Older is it .

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  • Posted

    I know the feeling! It's bad enough feeling so sluggish all the time and literally wanting to live in your pjs but gaining weight just makes you feel even more bleh. But of course you've got no energy to do anything. I just went to Aldi on my lunch break and bought a load of fresh veggies and chicken so I'm going to make some nice healthy soup if i can find the energy and simply roast chicken and veg for dinner to see if simple foods help. I've got horrible nausea all the time so i'm going to try and keep a food diary to see if I can spot if certain foods make me more nauseous etc. I don't know if you've been on any other forums but the Health Unlocked one is quite good too. Sometimes it just helps to hear that you're not the only one feeling like this. We're not in fact losing our minds, we're just ill and our poor bodies don't know if they're coming or going. Take care
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  • Posted

    I think radioactive iodine is given and it treat the condition well ,but it may lead to hypothyroidism and u may need thyroxine hormone replacement for life.If it leads to the same effect as the surgical treatment why bothering yourself by going through surgical operation.
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  • Posted

    So I'm on 5mg carbinazole .so will that mean that my thyroid will become under active avenually then ????
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  • Posted

    I too have been offered radioactive iodine treatment but am worried about going hypo and gaining weight. This is the second time I have had hyperthyroidism and am on 20mg carbimazole at the moment. I am also experiencing different symptoms than last time . The same palpitations, breathlessness and heat intolerance. This time however I have not really noticed much weight loss and am experiencing more emotional symptoms i.e anxiety and depression . I feel overwhelmed sometimes , like I can't deal with everyday things. Also am very impatient and tearful . Have been off work with a chest infection which wouldn't normally bother me but I feel knocked out by it. Have got to wait for a letter with my next appt date and take things from there. Feel much worse than my last episode and can understand being offered the radio but don't want to destroy part of my body
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  • Posted

    Poor you I'm not feeling too bad just the tiredness ,did u come off the carbimaozle then , if so how long before symptoms returned ?
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  • Posted

    I was on carbimazole 4 or 5 years ago , levelled off and was taken off then discharged from endo clinic. Symptoms came back around July this year . I was at docs for my blood pressure bloods check and I asked if thyroid could be done. Doc said not due so I told her that I was going to the toilet more often and getting palpitations again to which she replied " you are on duiretics" ! I have been on them for over 4 yrs ! I wanted to use a four letter word at this point but just said that I was emptying my bowel more often. It was like I was having to insist on a test. Anyway one was done and I got the phone call to make app as hormones were up. Saw a different doc at my app who asked if I had been taking too much thyroxine??????? Have never been hypo and so have never been on thyroxine!!. Was put on 20mg carbimazole but no propanolol. Got really bad palpitations and out of breath and dizzy and had to go back to ask for some. Don't feel like docs know whay they are doing? Shouldn't they be monitoring my condition ? Should I have to insist on a test because my symptoms have come back? Would it have shown up in a blood test before got symptoms or do the levels just shoot up quickly? Am still on 20mg carbimazole have just had chest infect so had fbc done and assume all is well as not heard
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  • Posted

    Can't you get hold of the doc who saw you at the thyroid clinic or get ur doctor to refer you back to him, I'm not sure how quick levels go up, as I'm new to all this. I only knew I had thyroid troubles as I got the tremors so bad.
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  • Posted

    I am due to see doc at clinic in the near future have to wait for letter with app then get bloods done. app is usually a few weeks off from date of letter so will have time for results to get back to doc. My first symptoms ( on first bout) were palpitations plus weight loss. Think doc ran full bloods along with bp bloods that's when it showed up. Strangely my daughter had at same time so we went to clinic together . Hers hasn't come back. I don't have tremors and my eyes are fine . Just going to wait for letter with app on not a lot they can do meanwhile as it takes severasl months to work anyway
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  • Posted

    At least you'll find out either way fairly soon .keep in touch
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