Good afternoon all, I'm new here and have joined after doing a mass amount of internet trawling the past few days. I was diagnosed with Graves Disease in Feb 2015 and I'm sure like everyone else here it's been a real struggle adapting to life with this disease. I am currently on my second round of Carbimazole after relapsing late last year and I am currently on the waiting list to have surgery.
This weekend I met someone who had surgery (albeit 30 odd years ago) and lost the whole of her lower range...wouldn't be overly worried other than I'm a semi-professional singer. I'm also a single mum and so now my choice has been thrown out the window and I'm back to the drawing board as I don't want to put my voice at risk with surgery and also can't organise time away from my 4 year old daughter if I was to have RAI treatment...I also am of the stance that it's the immune system that needs repairing not the Thyroid.
I am now looking into natural treatments and diet changes but desperate to have the help of a doctor who has experience in treating GD naturally. Please could anyone suggest one? I am based in Ramsgate in Kent but am prepared to travel.
Thank you so much for your help in advance.
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MarianneR83
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Hiya and thanks for your post. I can't tell for perfect that my quitting meds in Jan and addressing my nutrition has paid off fully yet till bloods done in may with endocrinologist .
Swerve the GPS and mental health they have pinned me down all my life .
Please read through my posts and add me .
You have come to the right place and are heading in the right direction .
I live in northwest.
if you want to put heads togeather and get this situation under control your not alone and never will be here .
I'm Willing To travel too but 2 well behaved doggies shadow me .
Have a read I'm sure u will comment here and there .
My sister had Graves although I think she’s now Hypo. I don’t have a great relationship with her so I don’t know all the details but I do know that her Endo thought she was a pain in the arse because she refused RAI, I think she was worried for her son at the time he was young and she didn’t want to endanger his future ability to have children. Also she refused surgery. I think she just stuck with Carbimazole. Anyway she now claims her thyroid is dead and yet she isn’t on any treatment. I just don’t understand that as a Hashimotos sufferer 🤷♀️ I have to admit, she loooks awful and has gone from a size 8 exercise freak to a size 16 so yeah I would say that she needs T4 but as I say we’re not close she incredibly successful as a Physio manger for the NHS so she doesn’t rate my credibility to pass on any knowledge to her! Lol
What’s your main concern if you don’t have surgery? Can you cope with the Hyper symptoms until your thyroid dies? For sure I would try and I stop the attacks but is that fully possible on diet and vitamins alone? I’m not sure about that. Sorry I’m no real help but just wanted to say you’re not mad for not wanting RAI or surgery. It can be survived without 😀
Well, you are right in that Graves is an autoimmune disease and as such you have it for life. There is probably some generic predisposition, maybe a generation away from you, and I read to can come on because of a sudden shock, like a sudden death or car accident.
Graves tends to be stress and anxiety driven so maybe this is something you can look at with a view to your work/life balance ?
The thyroid is not the cause, but the victim of an attack by your immune system.
The thyroid is such a major gland that when it comes under attack it can be said to be life threatening.
The Nhs initially treat the symptoms with anti thyroid medication.
I read of some people on anti thyroid medication for many, many, years.
I read of some people having their dose titrated and eventually finding remission.
I read of people feeling pressured to have either their thyroid ablated with RAI or their thyroid surgically removed.
Maybe age dictates which treatment option, if any, you are offered.
Maybe the length of time you are an outpatient puts pressure on waiting lists times.
Maybe it's none of the above, all I know is that I was given no treatment options other than RAI and was told this at my very first outpatient appointment for treatment with Carbimazole.
The Nhs do not seem to take into account the auto immune component of thyroid health disorders, and I read functional doctors might be more able to treat auto immune conditions, but do not know of any success stories to offer you.
Removing the target of the attack, is somewhat simplistic, and simply swopping one set of symptoms for another, doesn't really solve anything, but the Nhs believe that they can manage hypothyroidism better than they can manage a hyperactive thyroid gland.
Living without a thyroid comes with it's own set of problems, especially when you can't get prescribed the necessary thyroid hormone replacements.
Elaine Moore is an American lady who has the disease and drank the radioactive iodine.
She found little help or understanding when on her journey in the late 1990s and decided to write a book to help others, entitled Graves Disease a Practical Guide. She has gone on to open a Foundation in the States of all things Graves for all Graves patients to freely use. It is fully researched, with open forums and help for anybody needing it.
It is stateside so the medical protocol a little different but there are sections on alternative treatment options and diet and lifestyle choices you might like to consider.
Thanks pennyannie for you reply - mine started after the birth of my daughter...that was a pretty bad labour. I managed to get in to remission previously after the first round of anti-thyroid medication and I'm now back on it after a relapse. I do feel my specialist is pressuring me into getting rid of my thyroid but I can't bring myself to so it for multiple reasons.
I'm not keen to stay on the Carbimazole as have had a few times where I've had scares about my white blood cell count, I am also aware of potential damage to my liver from prolonged use so I feel my only option is to change my diet and take supplements in the hope that maybe it is linked to an intolerance but I don't feel confident doing this without the guidance of a professional and I'm pretty sure my specialist will try to talk me out if it, I just don't seem to be able to find anyone locally who is able to treat this naturally but I'm sure there is. Thanks for the advice will check that website out.
Yes, I know what you mean, doctors know what they know, and seem unwilling to look outside their guidelines.
There are other options to Carbimazole.
I too was frightened by the white blood count dogma - but no one ever mentioned the risk of thyroid eye disease, my vanity would have kicked in had I been told this piece of information, let alone drinking a toxic substance that goes through your whole body ?
Professor A Toft an eminent endocrinologist has written a paper - the following is an extract of the full article which is available on this site, somewhere, sorry, I don't know how to do find it :
" I am so concerned about the state of advice on the management of primary hypothyroidism that I am increasingly reluctant to suggest ablative therapy with iodine 1-131 or surgery in patients with Graves disease, irrespective of age or number of recurrences of hyperthyroidism ".
December 2017 Journal of the Royal College of Physicians of Edinburgh.
I think this says it all. !!
Your body has been running too fast, and maybe sometimes running too slow.
It would be prudent to check that your vitamins and minerals, ferritin, folate, B12 and vitamin D are optimal to help keep you strong during this difficult time.
So sorry to hear about your issues with your thyroid. I was on similar medication (Tapazole) for 2 years (Canada) and I was very lucky that I did not experience liver or white blood count issues - but unfortunately I became resistant to it and needed a TT 5 weeks ago because my toxic multinodular goiter was crushing my vocal cords and windpipe. I was out of options.
I am a university professor and my voice is my instrument - I really feel your concern over your vocal cords. And Pennyannie has given you some good feedback. BTW - I held onto my thyroid for 25 years before it needed to go. I had reached the point where I could no longer lecture without becoming breathless and losing my voice, even with a microphone.
I had a very skilled surgeon - and he has done over 3,000 surgeries with a 0.03% error rate. I had a huge goiter - it was the size of a grapefruit on the right side and an orange on the left. One of the nodules was the size of a thyroid lobe on its own! If you decide to have the thyroid removed, please make sure your surgeon does at least 500 thyroid surgeries per year. Thyroid surgery is very specialized and not for a general surgeon to do. In the right hands, your chances of vocal cord damage are very small.
I don’t know if you have a goiter or how large your thyroid is. If it is very large, surgery may be a better option for you. Also, there is research that suggests that if you have RAI and then need surgery to remove the thyroid later , your outcome is not as good as if you had the surgery to begin with.
It is such a tough decision. I am personally glad I had the surgery. My voice is coming back, slowly but surely. I had no vocal cord damage at all, nor did I have parathyroid damage. I had a rough time after the surgery - it was very hard. I couldn’t get out of bed for 2 weeks and I cried incessantly for days on end from the hormone disruption . That only stopped recently as I ended up needing a medication adjustment.
I am 5 weeks post surgery and feeling better. I am able to go for walks again (up to 45 mins per day, usually walk about 90). I am not ready to go back to work - still shaky and meds are still being adjusted. My voice is coming back well and I am starting to get my range back too - I usually sing in my a cappella church choir, but not there yet!
I am hopeful that I will recover - my meds are still under adjustment. Many symptoms I experienced that I thought were other problems were from my thyroid. My hair was falling out, my skin was coming apart, I had horrific neck pain that I spent a fortune on fixing unsuccessfully which disappeared as soon as the thyroid came out. So, I am feeling better in many ways.
While my journey has been difficult - I wish I could have kept my thyroid - I am OK with how things are. I did not want RAI - I was offered that 2 years ago and turned it down. My endo agreed to do the drug therapy and see what happened. Ultimately we trade one set of problems for another when it comes to thyroid.
I wish you the very best and am sending you positive thoughts!
Like you Marianne I was diagnosed with Graves in 2015 also TED. I too did a lot of research and came to the conclusion I did not want a thyroidectomy. In spite of a healthy stress free life style my Trab remain high and I would probably relapse if I stopped the carbimazole. I am uncertain that there is a natural way to reduce the antibodies. You haven't said what dose you are on or if your Trab is being measured or what your blood results are. I am on a very low dose of block and replace which my Endo thinks safe if I need to be on it long term. However I hope eventually I might achieve remission. The main thing is I am feeling good after 3 challenging years and wish you the same .
Hi Asiatic, I am currently on 30mg of Carbimazole daily and all I know is that my TSH level was 0.05mIU/L and the FT4 was about 35pmol/L. My specialist seems to be keen to get rid of the Thyroid and has previously said that staying on Carbimazole long term is not an option. I am fed up with being ill and feeling ill and I hate the stress that comes with going into remission then what seems like the inevitable relapse but I don't want to get rid of my thyroid when the problem is my immune system. I sadly think that my life will never be stress free but I know now it is much less stressful than it was before when I was first diagnosed. My prayers to you and I wish you the best in your journey.
I can understand your dilemma. I responded very quickly to 20 mg carbimazole and was able to reduce the dose very quickly. I remember reading a paper that suggested doses under 10 mg were safer. This might not be enough in your case to supress your thyroid. While trying to decide what route you wish to take I would suggest you follow up on the suggestion by pennyannie regards Elaine Moore and post a question to her through her forum. She is very knowledgeable and helpful. Reading through her answers to others are useful as mostly they are from people with Graves and she is good too on natural remedies. Her book contains a whole chapter regards this.
I would really appreciate if you can email me address your natural doctor near London who is dealing with Graves disease. I have this illness since 2008 and experiencing side effect of Carbimazole so I would love to switch to natural way of treating this condition. I live in Kent to.
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