Im due more blood tests tomorrow diagnozed in September 2010 been seen by an endo last nov he immediatly was pushing for me to take the radio iodine which i didnt want. Im on carbimazole which works when i remember to take it as im not good with tabletsso not expecting bloods to be brill this week. I have decided for now to stay under my GP and on the tablets as i dont really want to have a removal just yet as that is what i would opt for. Can i ask anyone out there who has gone for removal do you go Hypo and if so how do you control your weight as that is a concern for me.? I cant stay on the tabs long term as im 44 and i knwo they dont like yout o take them long term. Im ok at the minute as i was very poorley prior to diagnosis.
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kathyrowley
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Well done for refusing the RAI........ you really don't want the stuff circulating round targeting breast tissue... (what do you mean they never said!!)
If the carbimazole is working fo you, why wouldn't you be ok just taking it for as long as you like? What do they think will happen and where is the proper researched evidence for this? Don't just go on say so.......
As far as I'm aware you can take blocking meds for as long as you are happy with them.
Many people report going hypo after thyroid removal or ablation, just look back at the posts on this forum or check posts on tpa-uk.org.uk or stop the thyroid madness. If you're hyper then after the thyroid has gone,people seem to need much more meds than normal due to being t3 resistant and the docs don't seem to be able to grasp this.
Does Rai cause possible breast cancer then because I had to have Rai they couldn't get my Thyroid down with just Carbimazole it didn't work after 18 months on it.
That's what's happening to me been on 2 different anti thiyroid meds,,,carbimazole and propylthiouracil..when I was on carbimazole which was over 5 weeks I collapsed in my local post office and was rushed to A&E my heart rate was over 200 I was kept in for over 5 hours and let out when my heart rate returned to normal levels.
They told me to come off the carbimazole (do not take anymore) hum I asked the heart consultant why did I need to do that as I was diagnosed with overactive thiyroid he told me I could not take it as I had a really bad reaction to it and he would inform my GP ASAP..I saw my GP 2 days later he pescribed the propylthiouracil I had been on it just over a month and I had the same symptoms but this time I am vomting my muscles are weak,I sweat when up vomet when up ,,it's like morning sickness but without the pregnancy.im bedridden at the moment due to a lung infection I'm not recovering well..iv not eaten solid food for over 2 weeks iv lost weight and I feel like dying..I have rang my consultants secretary begging to be seen by my endo but she always puts me back to my GP who I'm sure has no idear about my condition..I would have my thiyroid out tomorrow if I thought it would stop the sickness and nausea...my t3 on carbimazole was 24.2 I was on propylthiouracil for over a month and my t3 as gone to 28.3 I'm sure the meds are not working I feel awfull and have not been out of my house for over 3 weeks now,,this is not living it's hell.....I wouldn't have radio therapy I think it's dangerous to put that crap in to your body',...just want mine out....😭😭😭😭😭😭😭😭😭
Hi Sandie,
Dr P isn't too keen on RAI in his book, and this link anticancerinfo.co.uk/Iodine... explains how breast tissue and the prostrate gland both use iodine. The problem is that tissue does not know the difference between iodine and radioactive iodine.
Hi Sandie , like you need more to worry about , sometimes it's better just not to know all the details of what can happen , but then again sometimes things have to be done as it would be worse to leave it , like I take meds that really should not be but taken togeather but the GP said sometimes you just have to as leaving you without would be worse .
I started out with Graves (autoimmune HypErthyroid)and after 15 months on Carbimazole and then PTU (very long name) they wanted to push me into radio iodine as it wasn't working fast enough. Then my new consultant agreed that he would let me carry on on the tablets for 6 more months as I couldn't have time away for the radio iodine. When I was re-tested after the extra time I was back within normal range and no longer needed the radio iodine treatment.. The tablets had worked like putting the brakes on a car that is racing to fast.. Unfortunately for me 3 years on and I have now been diagnosed with Hashimotto's ( autoimmune HypOthyroid) so I'm now on Levothyroxine.. BUT I did manage nearly 3 years of feeling almost normal and being tablet free. Just to say I am also dreadful at taking my tablets so I set the alarm on my mobile to remind me to take them!!.. might work for you to. Good luck for the tests.
I just wanted to add that I've been HyperThyroid since Jul 2008 took carbimazole for 18months and now been on PTU for 10 months. I've said no to RAI and last week said no to surgery. I'm giving the meds another 9 months to see if my levels improve. My endo has said there should be no probs if I decide to take PTU long term.
Good luck with the results.
M
Hi
some people stay on carbimzole for years and years, for instance some people take 2.5mg once a week. I had a TT for Graves and I have gained 53lbs that I cannot lose despite now brilliant blood results. I could give you a very long list of other disasters this operation has caused me. My endo said it's due to poor peripheral metabolism which is related to autoimmunity and former hyperthyroidism in ways in which they don't yet understand. Nearly three years post op I still don't work, I've had to move back in with my parents, I was diagnosed aged 37, I'm now nearly 42 and have missed my chance to have kids (the op wrecked my sex hormones too). It's been a NIGHTMARE. I'm doing OK now but only because I had to figure it all out and treat myself - the tests and drugs and supplements and treatments involved have cost me thousands of pounds. The NHS has washed its hands of me. I know hundreds of people like me too - quarter of all people who lose their thyroid never recover their health and they don't know why (I know why, but welcome to the INSANE world of thyroid treatment!!!).
Don't do RAI, I agree iodine uptake is in the breast, ovaries, gut - not just thyroid - I know lots of RAI casualties. By a cat's whisker, TT is better than RAI (this is bit like choosing between being hung or drowned, if you get my drift!).
If the drugs are working for you, and you are doing OK then in the nicest possible way I'd give yourself a kick up the bum to be compliant in taking them Put a bleep on your phone. I would have given my right arm to be have been able to do that.
For the love of God, do not lose your thyroid unless you really, really have to, life will NEVER be the same without it.
Did u gain weight on carbimazo.e I'm on 10mg a day and still gaining after it was reduced a month ago only on treatment two months now but feel bloated was always thin now watch what I eat and excercise no joy
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Put a bleep on your phone. I would have given my right arm to be have been able to do that.
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