# Had RAI 5 weeks ago - thyroid not going down



## loulew218 (Nov 23, 2010)

Hi and apologies in advance for this if it ends up long winded but I'm at my wits end. After about 18month of complaining of excessive tiredness I was eventually diagnosed with very high hyperthyroidism and put on carbimazole and beta blockers in April this year. The consultant I saw almost immediately gave me 2 choices that I'd have to make by November of the operation to completely remove my thyroid which he seemed to prefer or the RAI but he wouldn't point out any reasons why and fors and againsts either treatment. I've also been diagnosed with Graves Disease and he says I have a large goitre in my neck though I can't seem to be able to see it myself nor does it cause me any discomfort. I've had text book symptoms EXCEPT the weight loss and I'd been back and for the drs saying that nomatter what I did I just couldnt lose weight prior to diagnosis.

SInce I've been put on Carbimazole and an acute dosage of beta blockers I've gained 2 stone since April and I'm not eating excessively but the tiredness has got me really down and no matter how much sleep I get I feel like I haven't had any.

On the 12th October I had the RAI drink and last week went back to my dr as I feel much worse. He sent me for a blood test and my thyroid hasn't come down at all...on top of this my graves disease seems to be much worse with one eye looking far wider open than the other.

As a consequence of the wonky eye and the weight loss I feel so so down and am in tears all the time.

My consultant who I'm due to meet with next month is very uncommunicative and unhelpful and everytime I've complained about the weight gain as I'm not massive - weigh about160lbs he's just dismissing it. He knew I wasn't too keen on the op for vanity reasons as I am prone to bad keloid scarring and didn't want that on the front of my none wrinkly neck but had I know my eyes would get worse I'd have probably risked the op.

Has anyone any advice and does it ever get better as I just seem to be getting more tired, more down and heavier and I really have no get up and go or enthusiasm about anything at all.


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## Andros (Aug 26, 2009)

loulew218 said:


> Hi and apologies in advance for this if it ends up long winded but I'm at my wits end. After about 18month of complaining of excessive tiredness I was eventually diagnosed with very high hyperthyroidism and put on carbimazole and beta blockers in April this year. The consultant I saw almost immediately gave me 2 choices that I'd have to make by November of the operation to completely remove my thyroid which he seemed to prefer or the RAI but he wouldn't point out any reasons why and fors and againsts either treatment. I've also been diagnosed with Graves Disease and he says I have a large goitre in my neck though I can't seem to be able to see it myself nor does it cause me any discomfort. I've had text book symptoms EXCEPT the weight loss and I'd been back and for the drs saying that nomatter what I did I just couldnt lose weight prior to diagnosis.
> 
> SInce I've been put on Carbimazole and an acute dosage of beta blockers I've gained 2 stone since April and I'm not eating excessively but the tiredness has got me really down and no matter how much sleep I get I feel like I haven't had any.
> 
> ...


Okay; you have a situation here!!! I personally had to have RAI 3 times as like you, I was in advanced stages of Graves'.

You must get some co-operation somehow here. I would advise RAIU to see what the uptake is and take it from there. Another RAI may be indicated.

I also gained weight. It was horrible and I too had GED; quite badly actually.

Are you in the UK per chance? You may have to start writing letters to get the medical intervention you rightfully deserve to have.

We are here for you. And welcome. I am so sorry you are having such a hard time of it.


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## lavender (Jul 13, 2010)

Can you get in to an opthomologist to help with your eyes?


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## loulew218 (Nov 23, 2010)

Thanks - and yes I'm in the UK and just hitting a brick wall - my own GPs have said they have no knowledge of thyroid disorders and I have an apparently good consultant but he just doesn;t communicate anything at all. He wouldn't say what the advantages were to having the op just that 'if it was me I'd have that' well I can't base a decision on that and its typical that I found out about the eye problems that the RAI can inflame after I had the drink. He didn't tell me I couldn't have the op after I'd had the drink either.

Going up 3 dress sizes is depressing enough without horrific looking eyes - I'm really not a vain person or I didn't think I was till I look this bad.

I've not been referred to an eye specialist and despite asking to see the consultant earlier than the 2months after having the drink which is still a month away he can't fit me in so I'm just having to muddle on despite getting more and more tired and can now cry at just about anything and I know I'm a pain to be around as I'm complaining all the time.

I'm guessing things are a bit different in the US - I just feel like here its 'a hormonal problem' and you've got to just get on with it. :-(


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## Andros (Aug 26, 2009)

loulew218 said:


> Thanks - and yes I'm in the UK and just hitting a brick wall - my own GPs have said they have no knowledge of thyroid disorders and I have an apparently good consultant but he just doesn;t communicate anything at all. He wouldn't say what the advantages were to having the op just that 'if it was me I'd have that' well I can't base a decision on that and its typical that I found out about the eye problems that the RAI can inflame after I had the drink. He didn't tell me I couldn't have the op after I'd had the drink either.
> 
> Going up 3 dress sizes is depressing enough without horrific looking eyes - I'm really not a vain person or I didn't think I was till I look this bad.
> 
> ...


Well; you could still have the op which is what my choice would be but I would get RAIU first to be sure what is going on. If you have it ablated (surgical removal), pathology would also check for cancer. I think this is a "very" good idea.

God bless,


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