Hello, this is my first post on this website. I have an overactive thyroid due to Graves' disease, and I am currently being treated with carbimazole for my second round of hyperthyroidism.
My NHS consultant says that as it has come back my condition now needs to be treated permanently with RAI or surgery. I believed there was a third option, to take carbimazole for any future recurrences. He says this is not possible as the drug itself is toxic carrying its own risks, and also that it is dangerous to the body, especially the heart, to allow a patient to repeatedly go into a hyperthyroid state. Long term use of carbimazole doesn't seem to be an option on the NHS.
However, I have read about many cases of people who 'manage' their condition with low doses of carbimazole, various supplements such as motherwort and bugleweed, and changes to diet such as going gluten free (which I am now) etc.
Does anyone out there know where I could find a consultant (who I guess would have to be private and not NHS) who embraces the more holistic approach where patients get to keep their thyroid gland and monitor levels with periodic blood tests? I hope I am not breaching forum rules in asking this, but if there is anyone who could help please could you PM me. I live in the south east.
Many thanks,
music55
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music55
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You could/can ask for a second opinion. I am maybe going to be in a similar position (I'm in the SW), as I just had a letter from my NHS Endo saying that having been treated for 9 months on carbimazole they are going to monitor me for another 9 months and then consider whether I need 'definitive therapy' I have no idea what this means but it doesn't sound good! I know that when I was gluten-free and took/am taking herbal tinctures and probiotics for good gut bacteria, and drank herbal teas, my levels went back to normal quite quickly and reduced carbimazole dose to 5mg, but then I became lax with the gluten and now my levels are back up - depressing - so now on 20mg. I know that there are mixed thoughts about Gluten, but I am now cutting it out again and seeing what effect it has. Anything is worth a try to avoid surgery. I am sure you can request monthly blood tests. I went to a medical herbalist and she gave me lots of advice. Good luck
It is interesting to read about your gluten free diet and how you think it might have had a positive effect on your levels. More holistic approaches to treating Graves disease do seem to favour a gluten free diet as it can help heal a leaky gut, which is believed to be one of the main factors that trigger off the antibodies that attack the thyroid.
I hope you don't mind me asking but I was wondering what herbal tinctures and teas the medical herbalist recommended for you?
The tincture I am currently taking has: lycopus, leonarus, melissa, viscum, urtica, plantago, euphrasia, iris, rose, and something I can't read!
Lycopus “Gypsywort”, is a Hyperthyroid herb, Leonurus “Motherwort” and Melissa “Lemon Balm” is to support the heart and calm the nervous system, and Euphrasia “Eyebright” to support the eyes.
I am drinking a herbal tea mix - currently: nettle, fennel, licorice, eyebright (also using eyebright for eye bathing), and chamomile (which I don't like). . She has made me a couple of mixes with other herbs.. can't remember what. I was also suffering from 'Hives' or urticaria, so some of the things she recommended were to help this and reduce the histamine in my system. (but I am taking a daily antihistamine pill).
There are a lot of supplements that she suggested that could help support me because of the thyroid issues: as well as a Probiotic and Quercitin supplements which are said to help reduce histamine reactions and hives, I've been taking Selenium - recommended by both my herbalist and the ophthlamologist.., and zinc, magnesium, vitamins A, C, B complex, D and EFA’s (esp omega 3 and 7). In simplistic terms - because the thyroid has been over active, causing the body's metabolism to work so hard, it could do with support maintaining and replenishing vital nutrients. I have tried to reduce my coffee intake!
So been trying lots! Hope you can make sense of all this!
Thank you so much for your very detailed reply, that's really helpful. I have done quite a bit of research on alternative remedies and many of the things you have listed ring bells with me. I really hope that collectively you feel they are helping, your herbalist certainly seems in tune with your condition.
Also I wish you luck trying to stay gluten free, I've been doing it for about 9 weeks now. It wasn't easy at first, I just felt so hungry all the time, I still do a bit , but not so much and I'm getting used to it. Over a couple of months I have gained a stone in weight, probably not a bad thing as due to the Graves I had lost weight and was just over 7 stone then, so now I am just over 8 stone. Also, oddly enough I would normally be suffering terribly with hay fever, I always have done, but for the first time in my life I have had hardly any symptoms at all and I have not needed to take any antihistamines for the last few weeks, maybe due to being gluten free perhaps??
Anyway, best of luck with the gluten free diet, I definitely think it is worth a try and I intend to keep it up!
I don't know too much about Graves, but I know there are some forum members who have been treated for many years with carbi. Hopefully some will come along and comment. If they don't you may be able to use the search to find other people's experiences. Unfortunately the search is a bit rubbish, so try when you've got quite a lot of patience!
Your endo is talking a load of tosh imo, I was on and off carbimazole for 12 years with no ill effects then was told I needed to have RAI, trusted my endo to know what was best for me but was big mistake worst thing I ever did I was not well for 8 yrs after until I managed to get t3 prescribed. Would suggest you find out as much as you can about RAI before you think about having it. I think endos only want to give you RAI so they can hand you back to gp once you are stable. They can't make you have it if you don't want to. Sorry can't help with finding a good doc hopefully someone else will be able to.
I'm really sorry that you regret having RAI, and thank you for being so open about it. It is only natural to believe that a consultant with expert knowledge and experience should have their patient's best interests at heart, but it is shocking these days to discover that their recommendations are quite often nothing more than target driven. Thank you for advice and I wish you all the best.
I am hypothyroid so don’t have a great knowledge of hyperthyroidism except having short periods of it when I was untreated, but you could Email admin at thyroid uk and ask for the list of sympathetic endocrinologists they keep telling them details of your specific case to try and get a good one for you.
I only took carbimazole for about a month because I came out in a rash so I then took PTU for 4 months which made my TSH 9 so I then stopped it to see what my levels were because I had no confidence in my Consultant (this was against his advice btw). I was lucky because I then went into remission for 4 years but I am now beginning to question that I actually had Graves Disease (he said I did) because someone on this site thinks I might actually have Hashimoto's Disease. My Consultant suggested I had my thyroid removed at the time which I decided against and after reading up what would have happened to me I am so glad I didn't. I know a few people on other sites (Graves Disease sites) who have taken carbimazole for years and they are ok but there are always the exception so I would try and do as much research as you can about the drug.
hi music 55 I have been taking carbimazole for the last 5 years it took near to 4 years before the dose was reduced to 5mm daily before this it would fluctuate if my dose was reduced .but eventually I am a level where if I feel I may be a little hyper I increase by half a tablet and this seems to keep me steady my consultant tried to convince me to have radio iodine but this is such a permanent thing and no going back after consulting my GP and other information it seems taking carbimazole for long periods is ok but this is a personal choice I wish you well don't make any decitions unless you are sure it is right for you and get as much information you can before you decide
Hi frian. Thank you for sharing your experience, and I am really glad to hear that the carbimazole is working for you. I don't blame you for not wanting radio iodine, I feel exactly the same about it.
It definitely is an option, and if you refuse RAI or surgery, I don't think they could deny you carbimazole if you needed it to remain euthyroid.
However, there are side-effects to carbimazole, and although the really dangerous ones are there, they remain a possibility even on low doses and after you've been taking them for a while.
Given that most of us have thumping heart rates while hyperthyroid, constant relapsing probably isn't healthy...and there is always a risk of thyroid storm.
I guess it comes down in part to how stable your thyroid levels are. If this is your first relapse in a while, if you achieve remission it could be another while until you relapse again.
Similarly, if your thyroid levels just seem to run consistently a bit hyper, carrying on with low dose carbimazole might be fine.
Thyroid Uk have a list of recommended endos (I forget who you need to ask, but the Admins will know) or you can post again saying where you live and requesting recommendations - people will need to pm you with any responses, we aren't allowed to make public recommendations.
Thank you for your carefully considered comments. You have made some very good points and you're right, there is a lot to think about. Thanks also for saying about the list of endos, someone else earlier in the thread mentioned this too - sounds as though it could be worth looking into.
You might like to take a look at the following website which is all things Graves for all Graves patients and their friends, families and carers.
Elaine Moore founded the website after she wrote the book Graves Disease - A Practical Guide. This lady was diagnosed with Graves, treated with RAI in the late 1990's and found no help within the system so wrote a book to help other people who might find themselves in a similar situation. She has now a well researched and respected website with open forums much like this excellent platform. There are sections on alternative treatments and a free exchange of information, it is stateside so some medical protocol made be different but nevertheless an excellent adjunct to this site.
Professor Toft the eminent endocrinologist most recent paper is suggesting that he currently isn't referring his Graves patients for either RAI or surgery and is keeping them on anti thyroid medication, irrespective of the number of recurrences of hyperthyroid. The article entitled:- Thyroid hormone replacement - A Counterblast to Guidelines was published in December 2017: Journal of the Royal College of Physicians of Edinburgh : and is on this website, in full somewhere.
PS. I was diagnosed with Graves Disease in 2003, treated with RAI in 2005, and am now managing Graves, thyroid eye disease ( a known side effect of RAI ) and hypothyroidism. Having found no help myself within the NHS system I am now self medicating and buying my own thyroid hormone replacements which happen to be Natural Desiccated Thyroid. I have learnt of my condition back to front, which seems to be a common thread on this amazing website.
When I read the PS that you added I got a tear in my eye, I'm so sorry for your situation, that's rotten for you. No one should end up having to self medicate, but it seems that too many people are ending up in that situation.
I am aware of Elaine Moore's book, and her website which is an excellent resource, I wish my consultant would read it!! The information on alternative treatments is really useful.
I read the Toft article that you mentioned, it is good to know that there are some doctors who are prepared to break away from the norm. All of this information will help me build a case for when I next see my consultant, although whether he will listen.......hmm probably a long shot.
Thank you again for all the information, and I wish you all the best in your quest to stay healthy. Warmest wishes.
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