Hi everyone. It's been It's been 17 months now since I was first diagnosed with Graves. Back in October 2015 I was started on block and replace therapy by my endo. As of the first of April, a mere 30 days away, I will be done with this and will come off my meds to see if it has worked. I have to say, I'm a little nervous. Actually, I'm a lot nervous. I know that the success rate isn't terrific but I am hoping that it will have worked. I have experienced a lot of issues while on this treatment. I've been plagued with infection after infection as well as bone and muscle pain, to name but a few, and I just kept on going in the hopes that I would be well again.
I suppose I'm really just looking for someone to tell me that it will be ok, and if it isn't, what my options might be. I really can't go through another course of block and replace. The carbimazole has been agony and every time my levothyroxine dose was changed I was poorly for weeks, nauseous and with a disgusting metallic taste in my mouth. My endo wants me to take radioactive iodine after this if it hasn't worked. I don't like the thought of that.
Mainly I just want to know what are my options if this hasn't worked?
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Teada
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Have they checked your antibodies to see if they have come down or did they just set 18 months and go? Firstly I wouldn't let anyone push you into Rai cos it's a permanent solution to a temporary problem. Secondly if you google Elaine Moore and look at her forum, you'll see lots of people with Graves Disease n she has excellent advice on treatments so she would know a lot more about block n replace! Good luck and you can achieve remission!!!!
I've never had antibody levels checked. When I asked my endo for confirmation of my diagnosis he just glanced at my eyes from across his desk! He's been pushing for RAI from the beginning. I think one of the reasons is that I'm 40, I only just got married and we would like to start a family soon. So long drawn out treatment options aren't favourable. Thanks for the name, I'll google her.
Oh my god, he sounds like another dangerously ignorant endo. Ask for Antibodies to be checked, it's important as that's the disease not thyroid levels.... (Extended sigh!!) It's just so frustrating to hear about someone pushing you into a treatment that will leave you sick for the rest of your life!
I also have graves and was diagnosed in may 2015 . Got stopped from taking carbimazole last September as TSH had started to pick up . In February I got started on carbimazole again as TSH had dropped again and endo said she thought I was going to go hyper again . My next appointment is April but I will be in the same position as I know my endo will push for rai or total thyroidectomy but I have decided that I am not going to pursue any of those options and I am just going to stay on carbimazole as and when I need it . I am 46 and had my third child at 40 . I think ultimately you just have to do what's best for you as they cannot make you do anything that you are not comfortable with . My endo will probably sack me as she's annoyed with me as I am a bit of a rebel and don't just agree to what they say ! .
The worst thing my daughter and I agreed to was her near-total thyroidectomy. Her health has gone from bad to worse and is now steady but she is not well and thriving. The removal of the thyroid resulted in Graves - in blood tests she wasn't showing signs of Graves before, or just after, the op. We trusted the endo - a London professor - when he said removal of the thyroid would be the end of her Hyperthyroid condition - now we know so much more, thanks to this forum, and we know everything else should be tried first. Good Luck
Hi Teada I would seriously think about not having RAI as others have said its a more permanent thing that you can't go back on, I had it in 2012 and really wish I hadn't. I had been hypo for many years on and off and was obviously a drain on the NHS and got talked into it even though I really didn't want it. I am a stronger person now and I wouldn't be so easily persuaded to go for it,
I have gained a lot of knowledge from this site so read all you can. I have drawn the conclusion it would have been better for me to stay hypo and cope with the occasional bouts of flare ups. I was treated with carbimazole and wish I had stayed on it till all my symptoms settled.that is only my opinion of course but I wish you well with your search for better health.
Hi, I know this is scary but there's good advice here and on the referred sites. I'd agree with those who say "don't let them fry your thryoid or remove it!"
Here's why: I was dx in 2002 with Graves, from hyper symptoms, and the endo immediately recommended RAI. I refused, having read up a little on the Japanese studies and Danish studies showing that methimazole treatments worked better in the long run. After changing endos 4 times (thank goodness I was hyper then, or how would I have had the energy to make those changes and hunt down all those clinics!) I found an endo who agreed to try methimazole/tapazole plus slight does of inderal(beta blocker) to slow the heart (I am in the US). After a couple of weeks the superficial symptoms were better; after 6 months bloods were looking close to normal, so the endo began gradually weaning me off by reducing dose a tiny amount weekly. (I had to learn to shave the pills until half-way point, when a pill-splitter worked.) Never had any replacement at that time, was off it at month 14, and was really fine until about 2010 when severe hypo symptoms kicked in. Have been struggling with that ever since (thank goodness no antibodies).
So I'd say, maybe consider giving your body a chance to right itself, or to come back into a better balance with the help of carefully chosen and monitored meds. Zapping the poor thyroid is zapping the victim of an autoimmune attack, not solving the underlying cause. And RAI is a permanent and violent thing that you can't undo, whereas medications you can tinker with as your body adapts. Takes more patience, but I really do believe in it and am glad I didn't attack the victim, but rather, saved my poor little stressed-out thyroid gland.
Over here our medical system is set up for profits, not for health, and it is the quick, violent, invasive act that earns the most; the gradual, slow re-calibration of medicines does not earn them any fast profit and in fact is costly, so that's why, in my opinion, it is first line treatment here. Really hate this. (I'm moving to UK soon and am so glad!)
I've been on a similar drug regime to the one you mentioned. I've been taking carbimazole and propranolol (beta blocker) to manage symptoms. The endo tinkered with my dose a lot in the beginning to find one that would work. It's been 17 months now and in the past two I've begun to feel more normal. But I can't continue to take carbimazole forever. One of the side effects is bone and muscle pain which I have suffered so severely with for the past year or so. So much so that my G.P. sent me to be tested for arthritis twice! Really hoping it works because I'm not trying it again.
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