Thoughts required

As you may or may not know I have Graves' disease.

I had a thyroid storm in 2013 dropped over 2 stone in weight in under two weeks, went into carbimazole levelled off. Was great for 9 months then went hyper again. This time RAI treatment was done.

There was a little chat before hand saying you will go hypo and may gain a couple of pounds but that's normal and after when on the levo it will all be fine

No one every explained the T3 issue.

So if I get this correct. You can't stay on carbimazole because of the side effects..........

Therefore it's either RAI treatment or removal ..... but if you don't convert properly then we can't give you the correct medication to sort it So we skirt around that issue blaming all sorts of things before you have to face it head on by taking 200 mcg of levo which is the top amount.

But .... so I gather you can't stay on 200mcg because it's bad for your bones !!!!

But you still can't have T3 !!!!!!!!!

So long and short of it is, the powers that be have put me into a hypo state, I've gained 6 stone, I'm on nearly the top amount of levo, and I still feel crap!!!!

But you will not acknowledge the T3 issue!!!

Then every day this week the BBC news website has be going on about obesity !!!! Well I'm sorry but I hold the NHS responsible for my obesity!!!

They did this to me. I trusted their advice and that they knew best.

Well look what I got for trusting them. 6 stone heavier and now obese!!!!

Rant over. Thank you for listening!!!!! If I've offended anyone I apologise in advance!!!

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6 Replies

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  • You are so right Snoddyoddbod , your post just about sums it up.

    I still have a thyroid, but I imagine it's pretty useless by now after 43 years of being diagnosed/treated with Levo, so I haven't experienced what you have, but what you say is so spot on :(

    They don't care, they just don't bl**dy care.

    What's the betting if a doctor or someone close to them was experiencing what you are, then they wouldn't be left in the situation that you're in!

  • Hi snoddyoddbod I totally agree with you, I feel exactly the same after having RAi and now hypo and have never felt completely well since. You just feel like your banging your head against a brick wall nobody wants to listen about the t3 situation.

  • Snoddyoddbod, you really, really, really need to get a full set of blood tests done if you can possibly arrange it or pay for it. Without information we can't help you in any concrete way. We can help with emotional support, which is good for a while, but ultimately it doesn't improve your physical health.

    You need to know :

    TSH

    Free T4

    Free T3

    TPOAb

    TgAb

    CRP

    Ferritin

    Vitamin D

    Vitamin B12

    Folate

    Is there any way you can get this done? Do you know the information, website links and prices for getting blood tests done privately? Do you know what your rights are with regard to getting copies of blood tests and other medical records from the NHS?

  • I have had them all done I will put up full set later.

    The emotional support is cracking on here. I feel since joining more at ease with myself than ever before. Knowing I'm not alone with the disease is s great help.

    My daughter and my best friend have got their heads around it but everyone else in my family and circle of friends have no idea at all

  • Ranting helps! Or not. I am in constant f*** you mode but on the other hand it pushes me to fight harder. For some it might not work, but according to studies it's better the curse, yell and rage than keep it inside. I find ranting reduces my stress levels. I might cry after ranting but helps too it cleans up the system.

    I am sort of very practical person in the end I encourage everyone to rant!!! And this forum is safe as we do not take it personally, we do not turn it against you.

    I hope you feel a bit better. Thyroid wise ofc not as that ranting doesn't fix. Except not long ago a read an article , written by a man who obviously doesn't have a thyroid issues that women have thyroid issues because they do not speak out. All bad emotions gather in thyroid , that's why it swells.

    He probably invented time machine and escaped from stone age or something as his view is sort of outdated. Or... maybe that's how doctors really feel.

  • Stone Age is exactly right!!!

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