Ending Carbimazole treatment

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I was diagnosed with Graves Disease in August last year and have been taking Carbimazole since September.  I started on 40mg and have gradually decreased my dose every few months until I am down at 5mg.  I've been at this level for two or three months now and am due to see my endocrinologist at the end of August.  Last time I saw her she suggested that, if my blood levels continue to be stable, we either reduce the dose to 2.5mg or stop it completely to see what happens.  I'm about to go through a house move which is obviously stressful and so she didn't want me to stop the medication until I'm settled which is understandable.  I really want to get off the Carbimazole but am worried about the symptoms coming back.  My endo has said that about a third of people will relapse straight away, another third will have a relapse at some point in the future and some people are fine for the rest of their lives.

 

Just wanted to know if anyone had been through this and come out the other side with any useful advice or experiences?  I've read some reports that say that most people will relapse and that RAI or surgery are the only guarantees against this but also some reports that say a healthy diet and the right natural therapies can almost completely guarantee permanent remission.   Any thoughts?

 

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  • Posted

    I would take Acetyl-L-Carnitine 1,000 mg daily and regular L-Carnitine 1,000 mg daily to prevent relapse. I am at the same place. I am taking Regular L-Carnitine, 1,000 mg a day and Acetyl-L-Carnitine 500 mg a day and 2.5 mg of methimazole. My levels are all normal and my T3 and T4 are at the lower end of normal so I am going to ask my Endo if I can stop the Tapazole. I will continue to follow up with blood tests after I have been off Methimazole for a month and will increase the carnitines if my values are indicating towards the other end of the scale too high. The Acetyl especially is very effective in preventing relapse I believe. I don't ever want RAI or surgery and will go back on a low dose of Tapazole if I have to. I feel fine on all this.
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    • Posted

      Thanks Linda.  I've been experimenting with the L- Carnitine.  I took Acetyl L-Carnitine for a while and my levels did stay stable but I've now swapped to normal L-Carnitine and I feel pretty much the same.  I wondered whether to continue with the carnitine when I do eventually come off the carbimazole or if I can gradually come off everything.  I'm happy to stay on supplements for longer if necessary but would like to get away with taking nothing eventually if I can.  I've been reading a lot about treating other bodily systems as endocrinologists focus on purely treating the thyroid but Graves is an auto-immune disease so it's thought that treating digestion, adrenals, immune system and even hormones needs to be looked at.  I'm currently trying to improve my diet and am considering visting a naturopath for more advice on natural methods of dealing with this disease and preventing a relapse.  Your advice throughout my time on this board has been invaluable - thanks very much!
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    • Posted

      I don't know the answer to that one Karen. I think you and I are test cases. For myself, I am going to stay on the Carnitine when I stop the Methimazole completely. At 1,500 mg, it is a low dose and it helps other areas of the body as well such as the heart. Also I will see how my labs are when I stop the Methimazole. But the Acetyl has caused the greatest change in my lab results which to me means it has been the most effective in treatment of my disease since I don't have antibodies anymore. I am hoping that it addressed the immune problem but we will just have to see. I think your plan to see a naturopath and get advice on natural methods and prevention is an excellent one. Thanks so much for your feedback and all the best to you.
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  • Posted

    Hi Karen,

    I was diagnosed with Graves over forty years ago.     I was  on Carbimazole for a while.   I can't remember the dose.      I had my bloods checked annually, and I was fine.   Then about three and a half years ago I became hyper again.   I felt much worse than I did the first time.   I was on block and replace for a while and then had radioactive iodine.     I've never regretted it.    It took a while to find the right dose of thyroxine, but I feel fine now.

    I hope things work out for you.

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    • Posted

      Thanks for that Marigold.  I've only spoken to one other person who has had the disease and not relapsed.  Hers was thought to be linked to the menopause and has not recurred.  I've spoken to others who have had surgery and they have said similar....it takes a while to get your thyroxine right.  I guess I just hate thinking of myself as ill and would like a permanent cure with as little intervention as possible!
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  • Posted

    Yes Karen.  Same thing happened to me.  I was on carbimazole for 18 months.  I respond very well to it and at the end of treatment I was only on one tablet every third day.  I was checked six months after stopping the meds and all was fine.  I was OK until last year when I had sepsis which brought it all back, this time far wiorse.  I was told it comes back in 40% of patients.  So I'm still on the meds now and hoping I can eventualy come off them again.  RAI is not an option for me due to other issues and I don't really want another operation. 
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    • Posted

      Thanks for that Sue.  If I thought i could just go back on meds if it recurred and all would be OK I suppose i could cope with that but I've heard stories of people only getting one shot at the meds and then being pushed towards RAI or surgery.  Fingers crossed I can stay healthy!
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  • Posted

    If you don't want the RAI or an op don't have it.   They do try to push you. It's cheaper to do it and just get rid of you under the care of your GP.  It's too final for me.  I'm remaining positive that if it goes again it won't come back. 
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    • Posted

      I have to admit that no-one has tried to get me to go down that route yet.  My endocrinologist has been pretty good but I'm about to move house and will have to find another GP so I'm hoping they're as understanding.  I pretty much know how to read my results and stuff now and am happy to adjust my dose of carbimazole accordingly so, as long as the new doc will write me a prescription if and when I need him to, I'm fairly confident I can manage it myself.
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  • Posted

    My endo is useless.  Keeps cancelling my appointments and I went hypo. Also fails to contact me after a blood test if meds need changing and I have to chase. If he does it again I'm going to ask to see someone else. 

     

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    • Posted

      Mine keep changing my appointments.  One of them got cancelled at 12 noon when it was for 4pm!  They do always re-book them but it's really annoying.  I think that's just the usual NHS under pressure though!  When I get to see her, my endo is lovely but she only goes over my blood tests and tells me how to adjust my meds.  The one time I said I actually wasn't feeling well despite my levels being OK, all she could say was that there were lots of viruses going around at the time so maybe I was fighting one of those.  
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    • Posted

      I would find it annoying to have my appointment changed on such short notice as well. You could understand if it happened once but more than that, I do not think is acceptable.
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    • Posted

      In fairness, it's only happened once at that short notice but almost every appointment I have made has been changed at some point which makes it quite hard to schedule blood tests and arrange things around work.  Hopefully this won't go on for too much longer!
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    • Posted

      Yes I've thought of doing that but they always seem very frazzled and busy when I go in.  They're very friendly and seem to be very accommodating when I'm booking my next appointment but then I just get a letter through the post saying that they've had to change it!  I've only got one more appointment with my endo as I'm moving house next month.  They actually changed my appointment to the day before I move which is not ideal but when I phoned to see if I could change it they had no openings.  Once I move, I'm planning to try and manage the condition with my GP rather than asking to be referred to another endo.
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