I am newly diagnosed hypER & was given Carbimazole 5mg to take twice daily 29 May 2013.
Before deciding not to take this drug I googled as much info as I could and got the following information.
I already have a good diet because I don't eat processed food & I have mainly a vegan diet. But I stopped drinking tea & coffee, increased my veg intake by juicing and now no gluten.
I found out for myself that SOY is a big no no. I heart/pulse races and I finally tracked it down to the soy in the vitamins pills. My pulse was over 120 but now down to 75-85 just by be careful what I put in my mouth.
I've stopped playing badminton because I know it would be too much strain on me..
I take 1500kg of L-Carnitine per day as suggested by my GP - there is an Italian study that suggests this will reverse or reduce hyperthyroidism.
I also take a homeopathic remedy Nat mur (prescribed by a homeopath).
I've also read that herbs can help > Bugleweed, lemon balm, mothewort and others. So I plan to see a herbist if the above doesn't work.
My question is has anyone else tried to do this without the drugs and what worked for you?
There are so many theories that I have read like low on copper, iodine, stress, smoking, genes, that may cause hypER so I wonder if the 'cure' is based on the the type of cause.
Very much appreciate anything you have to say -good or bad.
Thanks TTLady - I'm lucky to have a GP that has agreed to monitor me every week while we try and find what will work. I would appreciate to hear from anyone that has tried or heard of alternatives. I've read that success has a chance if the alternatives are used before the drugs.
Re results above suggest a T3 toxicosis and according to a research paper (2011) this can be caused by an iodine deficiency which is the opposite thinking to hyperthyroidism causes.
I don't believe the endocrinologists understand this disease or rather there has not been any advances in treatment in 50+ years.
That's very sad. So if any of us are ever going to improve or get better we must research and find out for ourselves what can work.
Chinese medicine is much older than western. Herbs, acupuncture, - these are the areas that interest me.
Look forward to hearing from anyone what they think or have found.
Hi, I felt very much the same as you....when got first T4 results they were 44, decided to try complimentary for a month before going on carb. Saw medical herbalist, acupuncturist, massage therapist, yoga, no gluten, supplements, no caffeine, lemon balm and bugleweed. Four weeks on t4 had shot up to nearly 70. On carb and propanalol but bloods come down very well, now slightly under so on 5mg daily from 40mg. Feel much better and put on a stone, being careful with diet, still no wheat or caffeine and minim dairy (95 per cent free) have blood tests monthly so dose of carb can be altered. Wary of RI and even more so of surgery. 25 to 30 per cent of Graves can go in remission and doing what I can to help this... still having acupuncture and massage, went on brilliant yoga holiday in Denia, Spain, highly recommend that...x
Hi Tilly, sorry for not replying sooner. Do you still take bugleweed and lemon balm? Did you manage to find a good supplier or did you go to a herbist? Have you tired L-Carnitine - I'm finding very good. It's a nasty disease & would love to find out one day what causes it.
Going to try Bristol Botanicals for supply of herbs, have got L-Carnitine but read somewhere here that need to be careful with taking that as can mess up blood tests but not sure how......and also on carb so not sure about interaction...
You would need to find the route cause of your hyPERthyroidism to be able to manage it naturally, i.e virus, stress, dietary, genetics or nodule. "Cure"/Management and Cause would go hand in hand - treat the cause then treat the symptom. A less stressful job role has really helped me leaps and bounds. Healthy food had no effect whatsoever, mostly because thyroid can upset the gut, mistaken for IBS and then Carbimazole also upsets the gut so although tubby I am malnourished because I can't absorb my food properly. Personally, I'm wary of "chinese medicine" in the UK as we have caught out so many charlatans that have done more harm than good. I started on 20mg Carbimazole and am now on 5mg - its a quick fix way of stabilising the thyroid, then after you finish the course you can start managing it which is what I plan to do. I opted NOT to have the beta blockers. I feel like crap because I am nearing the end of my course - a month to go and my thyroid is unleashed! If it flares back up again I won't be having RAI or surgery - as if I really do have Graves, an autoimmune disease, I will still have it for life AND likely be hyPOthyroid too as a result.
It seems from what I've read that Carb can only be used in the short term & then it has to be RAI or surgery. Do you know what they mean by short term? I hope you're able to take a high quality multi vitamin. Acidophilus is supposed to be excellent for tummy problems. Would be interested to know what you take to with Carbimazole.
I have seen research in other countries that people take carb for up to four years and that remission is more likely then.... am willing to go for this... in terms of supplements I take acidophilus (one with all the good bugs in) krill oil, evening primrose oil, beta glucans Immune complex, Vit C, chromium (blood sugar stabiliser) iron supplement, Vit D....like vitamin junkie in the morning oh and L-gluthamine - supposed to soothe gut and make it less permeable...x
i just take D3 and B complex. am only on carb for 1 year then "wait & see what happens. whatever happens, i will certainly be more knowledgeable about my body. there is still so much to be learned about the thyroid. more important than any vitamin supplement, i make sure to minimise stress, not an easy feat make time for you & have "me time".
I agree with you...... feel am fumbling about in dark with a few lights on here and there (mostly from this site....) realise that that thryroid not culprit but under attack so when that's out of the equation, what next?
This is what Dr Toft said in a question/answer on Pulse online:-
5 Patients with hyperthyroidism often ask for advice on drug treatment versus radioiodine therapy. Can you summarise the pros and cons of each?
The three treatments for hyperthyroidism of Graves’ disease – antithyroid drugs, iodine-131 and surgery – are effective but none is perfect.4
Iodine-131 will almost certainly cause hypothyroidism, usually within the first year of treatment, as will surgery, given the move towards total rather than subtotal thyroidectomy.
There is no consensus among endocrinologists about the correct dose of thyroid hormone replacement so patients may prefer to opt for long-term treatment with carbimazole. Standard practice is that carbimazole is given for 18 months in those destined to have just one episode of hyperthyroidism lasting a few months.
But there’s no reason why carbimazole shouldn’t be used for many years in those who do relapse. Any adverse effects such as urticarial rash or agranulocytosis will have occurred within a few weeks of starting the first course.
Iodine-131 treatment for toxic multinodular goitre is the most appropriate choice as hypothyroidism is uncommon. Surgery would be reserved for those with very large goitres and mediastinal compression.
Once hyperthyroidism has developed in a patient with a multinodular goitre, it will not remit and any antithyroid therapy would have to be lifelong.
It is odd but I have seen loads of similar comments as yours. There are so many people who are diagnosed hyper who instantly decide that they can overcome an autoimmune disease or nodular goitre with diet and exercise. I have seen the denial and then said failure of chinese herbs, acupuncture and so on.
I do think that healthy eating and exercise are important but so is rest and a low stress life.
Carbimazole has been around for many years and does often work at least in the short term.
It is a drug but the fact is that untreated hyperthyroidism is very dangerous and can lead to lots of problems and death in the extreme.
Do look on here for similar posts as they do crop up regularly. Some people will agree with your methods. Many will not and I am one of the latter. I am not being mean or negative but realistic and I hope you are not offended by my comments.
Also look at how many people come on here almost hoping to have hypothyroidism......
Why should it surprise you or anyone, especially fellow sufferers, that I would seek out alternative approaches.
I'm quite amazed at your response which feels critical and dismissive of the fact that I am quite scared of the thought of taking drugs that can have severe side effects, or undergoing treatments that involve using damaging radioactive materials or worse still surgery to remove the thyroid. These conventional approaches have not changed over many decades and regardless of the fact that there are many different diagnoses for hyperthyroidism it is disappointing that it is the same treatment for them all. Sadly this doesn’t give me a great deal of confidence in so called 'modern' pharmaceutical medicine.
It is therefore imperative that we seek to try and find the best treatments, conventional or alternative, and support and respect each others endeavours. There is no safe or easy route when it comes to this disease.
Jay as I said it was not my intention to upset you but I have almost forgotten how touchy hypers are, especially in the early untreated stages. I was exactly the same and often still flare up.
However my intention was to state that many people who are diagnosed hyper go into denial which is often the opposite of people diagnosed hypo.
Then they often as you have try every other type of non conventional treatments available. Which is totally your perogative and much respect to you. You are right when you say that thyroid treatment has not moved on.
However I have a right to disregard such stuff as claptrap. Plus I have had graves for a few years, was diagnosed in May 2011 and have been on carbimazole for 2 years. So I do know what I am talking about.
Plus I have not backed up RAI or surgery as I do not want to do it either and I do know of the side effects and problems.
Modern medicine keeps people alive, acupuncture rarely does.....
I spoke the truth as I have seen it and experienced it. I may be dull and ignorant too however whatever happened to the listening to others?
Surely if you are asking for advice or questioning others then it is polite to listen to their replies instead of stubbornly and rudely calling them aggressive and burying your head in the sand with your fingers in your ears whilst humming the above poem..........
agree with this too, there hasn't been much variation in treatment for hypo or hyper for decads - but then it is middle-aged women who mostly succumb - it is important to try other complimentary help but bear in mind that it is an illness that can kill....or make you severely ill, so feels like sword of Damocles swinging overhead...
agree with you, maybe am in denial, or just hoping to be one of people who go into remission and doing what I can to help that and if not then feel have done something positive. Am taking carb and crossing fingers and trying to lead as healthy and stress-free life as possible....
Sorry Tilly but I dont get if you are agreeing with me or not.
I also dream of going into remission and living a healthy lifestyle is key to helping with that. However I was in denial about the whole subject for about a year. Now I realise that I am a Graves sufferer and will probably always have Graves but that does not mean that I have to be hyper or have surgery or RAI unless I choose it or need it.
My life has changed and I am certainly less stressed now I have accepted it instead of racing around trying to change my family and friends opinions or trying to find a miracle cure which probably does not exist.
Well the novelty of someone agreeing with me is nice!!
I am very tired this week due to loads of kids appointments. I have 3 young kids age 9, 5 and 3. So even if I had any left over time to study complimentary remedies I wouldn't have the money!!!!! ha ha.
I have had help with TCM and also the Chinese doctors at GreenLife - both said that they had nothing to offer that would work as well as Carbi. Yes herbs/acupuncture to help symptoms.
Homeopathy or herbal treatment....I think you have to decide which direction you would prefer to try.
As for me....GreenLife helped my symptoms....until I flipped hyper. Bugleweed helped lower the bloods....until I had other problems and needed surgery. I had to be on Carbi to bring the thyroid under control.....as it was running and that was really scary!
Motherwort lowers the speeding pulse....but should be used with great caution....I only needed a few drops. Lemon Balm is great and I use it in a tea as I have lots growing in the garden. It is also a diuretic...so you probably don't need to be drinking it at night!
My advice would be....to take the Carbi until the condition is stabilised and then see if your complementary choice will help.
A thyroid running out of control is very dangerous....
Other tests always useful would be adrenals and B12/folate and anything you can get.
I am very impressed you have a gp who will work with you with complementary therapies, esp the Carnitine. I recently started Carnitine because of digestive problems and within two weeks a massive improvement. I have since found information about the thyroid connection....so I am intrigued as to whether there will be some long-term help for me too.
Your Carbi dose is low and if that amount holds the situation....great.
Please be careful as, from my own experience, any stressful situation (however small) can create a very difficult situation for your thyroid/adrenals. Whilst you bring your thyroid back under control the key elements are ...no stress and as much rest as possible. And, of course, your dietary changes will help too.
I have follow-up bloods soon and see my endo end of July. I will happily post then as to the results of my own experience.
Take care.
Carole
diagnosis....suppressed TSH, enlarged multi-noduled goitre with isolated T3 toxicosis.
Carbi 2.5 mg daily and Bugleweed 5ml daily. Lots of adrenal support. A really healthy diet excluding gluten, refined sugars, goitrogenic foods, alcohol. Lots of exercise and also reflexology and massage.
I'll post again.....when I've used the link from my favourites it has worked...but not from the link I posted? The greenmedinfo is an extract from the lef article.
yes I have been given meds and took one and they gave me a blinding headache so NO more for me! I am already eating organically and am doing an autoimmune diet! Various supplements...how did you get on? I am booked in for a scan they think I have Graves :/.
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make time for you & have "me time".
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