Posted , 4 users are following.
Visited consultant today....taken off carbimazole last month by my gp due to mouth ulcers although I was only on 5mg....my blood test showing normal consultant tells me 50% chance thyroid will become overactive again and I need to think of either iodine treatment or removal of thyroid...due to mouth ulcers medication was not an option...
0 likes, 14 replies
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linda187 beryl38883
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madge1979 beryl38883
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I was told the chances of my Graves' disease returning was slight ... something like a 20% chance and after 2 years less and after another 2 years even less ... and so on ..
....and for a year now I've been just about back to my old self .. and Euthyroid .... so , no one can predict if or when it will return ... .......but by taking supplements that you have almost certainly lost during your Hyperactive period .. you can keep your immune system happy and in a quiet state ..leaving your thyroid alone ... at least that was my plan ... and the plan of many others ... my thyroid is keeping my body well and in a balanced state once more .
.. thank Gid !
I have no intention of destroying my thyroid Gland ... I need it badly !
Some members in my family have no thyroid and have been very ill indeed ... my sisters and cousins lives are unbearable due to thyroids that have been extremely neglected by their GPs ... I prefer to know
My thyroid is working and I'm doing all I can to restore the balance ... AND ... it's working !
Think very carefully before you make a very important decision .. the consequences could be lifelong .. and not ideal for you .
Good luck in your decision .
Luv mx🌹
Karmaway beryl38883
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rita87269 beryl38883
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Hi Beryl,
I have been temporarly taken off Carbimazole due to allergic reaction to it, most likely connected to dosage as I was on 20mg for 5 weeks before the hive/rash exploded. I see my endo tomorrow and I plan to ask her to be put on a lower dose. I have been off it for 1 week today and I haven't had any hyperthyroid symptoms back as yet.
I have had mouth ulcers as well as fever and soar throat the first 2 weeks I was on it and everything they told me to do was a full blood count every 2 weeks to see if the white cells (neutrophils in particular) were lowering, which was the case for me, they lowered for 3 weeks and then they went back to normal. So I think that rather than taking you off completely, the GP/endo should check regularly if your white blood cells are in range. I personally think it is a little extreme to take you off Carbimazole for mouth ulcers, especially if it was working well for you... They might be completely unrelated to Carbimazole and, as Linda say, they are really harmless.
Right now for me RAI or TT are not real options, I will do all I can to keep my thyroid under control.
Karmaway rita87269
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Mouth ulcers are a sign of a lowered immune system 😁
rita87269 Karmaway
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Indeed, and this is why I have been asked to check my white cells count every two weeks. I think it would be better to check the effect on the immune system via blood tests than simply assume it's neutropenia and stop the med...
Karmaway rita87269
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That's why they've taken Beryl off it 😁
rita87269 Karmaway
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I am not sure whether we are not understanding one another.. Indeed I understand all of this but as I said to Beryl I think it is really exaggerated as a reaction to take her off completely without checking her white blood cells count first. If the medicine works well on the jhyperthyrodism symptoms, then taking her off it because of mouth ulcers without seeing if there is a neutropenia from the bloods for real, seems too much of a reaction to me.
I had a mild neutropenia reaction to Carbimazole in the first 2/3 weeks of taking it but I have continued taking it and it worked well for me because I had no further neutropenia symptoms and the white cells count came back into the middle of the range. And I know of other people here in this forum for which this was the case.
What I ready in Beryl's message is that she was taken off Carbimazole for mouth ulcers without checking white cells count and she was then offered a RAI or TT in case the thyroid starts being hyper again... It just does not sound right to me.
linda187 rita87269
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beryl38883
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I'm really sorry but I didn't make it clear earlier I was diagnosed with over active thyroid last july and immediately put on 30mg carbimazole which has been gradually reduced to 5mg end of January....it was around this time when I began with mouth ulcers....GP prescribed medicated mouth wash and advised I stop taking the carbimazole, which I did and they cleared up. Sorry for any confusion caused.
I just didn't find the hospital very helpful yesterday....option wise lose the thyroid or iodine treatment!!! Just feeling a little deflated I think.
linda187 beryl38883
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beryl38883 linda187
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Hi Linda I would have found it more helpful if they would have advised me about diet and supplements. ..many thanks for your reply..
And thanks for all other reply it's good to know thers support out there
rita87269 beryl38883
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beryl38883 rita87269
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