Just read the thyroid UK article but it feels kind of bemusing
It says "The plan was for Jo to stay on carbimazole for two years but it seemed that most people needed either surgery or radioactive iodine after that anyway so Josef asked if he could have treatment right away, and the doctor agreed. Jo had a big say in what happened."
I've been on this nearly a year and been told I am doing well and can come if after 12M if still well on the next check ups. So this article sounds really negative, just because most need other treatment afterwards doesn't mean ALL people do, what if he didn't really need it? What if the treatment he had then had other implications and is he on other meds now??
This article is really confusing me, I have been told I have underlying graves but I would never go ahead for that kind of treatment unless it was really needed. I think he has not been such a good role model after all? It could encourage more to have this treatment and the article does not say if was the iodine OR the surgery that he had just that now " He’s very happy and has no problems with his thyroid! " Ok well I am on Carbimazole and have no problems with my thyroid atm.....the article is really lacking in clarity and information.
I'm sure I've read on here people having iodine treatment but then going too underactive?
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kittyelen
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Ah right! Oops. randomly found this forum online but I like their fb page that's how I found the article, I never realised they were separate charities. Maybe due to this website being green and theirs is? I do find this website confusing I thought this was the thyroid forum for thyroid UK!
The British Thyroid Foundation and the British Thyroid Association are very much the endocrinology profession's websites. Although separate organisations they are effectively the patient and doctor sides of the profession.
This website is HealthUnlocked (HU) - a private business that hosts forums for dozens of health-related charities and groups.
Thyroid UK is just one of the forums hosted by HU. You can find a list of the others here - and based on the wording of that page specifying that it is a list of public communities there are probably some private forums I know nothing about :
BTF and BTA .... be cautious of what you read if it comes from either of these sources, they are very closely linked (despite appearing to be separate) and seem to mostly promote the 'status quo' of thyroid treatment from the point of view of endocrinologists.
ThyroidUK ... this is a truly 'independent' charity for thyroid patients. (No connection to the BTF or the BTA) It has it's own website for information.
It also has a patients forum which is hosted by; HU (Health Unlocked) here.
Hi Iwas on Carbimazole for about 12 months but then came of it as my blood results were all back to normal. But I did get quite a lot of pain in my back, hips and knees which my gp put down to the tablets. I've now not taking them but my next bllod test is on 13th August to see if my levels are still normal
Hi, I’ve been on carbimazole since March 2017 . Not had a problem with it at all. Endocrinologist was pushing for RAI but I didn’t want it. I was advised to stop the medication last November as bloods were within range, but I didn’t feel ready to do it. I have been off medication for about 2 weeks now purely by accident in the beginning. I have a blood test next week so it will be interesting to see the results.
“Josef asked if he could have treatment right away, and the doctor agreed. Jo had a big say in what happened.”
I’m sure the doctor was very happy to treat quickly… patient sooner out to primary care.
I think in this case his sports career swayed his decision & it may have been best for him. Young males tends to respond well to treatment.
I agree the information in the article is very lacking. There could be much more about diagnosis and management process, most importantly how he is now after treatment. The leaflets the BTF provide to many hospitals about RAI detail the positives & glosses over any drawbacks. I’m sent ‘out of date’ copies frequently. Drs prefer to dish them out then have to speak to patients.
News articles about Josef, from a few years ago show his mental health has been in a terrible state. Makes you question if it could possibly worsened by thyroid levels although this is not mentioned.
Yeah I did actually email them, I also have bipolar and I've been really well but reading the article did make me feel really negative as it makes it sound like I am going to have to need RAI or surgery. I emailed them to say it is poorly written and they should be educating rather than making someone feel really negative about their future. I don't know if it's because I am just being sensitive atm but I really think it's worded quite badly
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