Can't tolerate carb - RAI or surgery?

Hi all. I'm a relative newbie to this but was diagnosed with Grave's Disease four months ago after a chance blood test, I never suspected anything to do with thyroid.

My initial levels were very high - T4 in the 80's and TSH <0.01. I was put on 40mg carbimazole and 4-6 x 40mg propranolol each day. I had regular blood tests and there wasn't much improvement so I went up to 60mg carb, later going back down to 40mg.

I have found the drug very difficult to tolerate and have experienced muscle weakness, severe nausea, itching and rashes. My blood levels started to come down but only slightly, my best score after three months was T4 in the 60's. For some reason my thyroid decided to go into extra overdrive and my latest blood test two weeks ago shows it back into the 80's!

I have now reached a point where my body cannot tolerate the drug with the side effects, and it doesn't seem to be helping much with the thyroid either!

My very kind endo, who is head of the department, has told me I am one of the worst cases she has ever treated! I have been put onto propylthiouracil for the time being but she is not 100% convinced and wants to book something in very soon to treat it. She doesn't think my levels will come down enough for RAI soon - she said T4 needs to be 25 - and seemed keen to move forward with the surgery quickly.

Personally I would like to get back on with my life and have gone from having a successful career and being extremely active to being very unproductive! I would like an improvement soon too.

I am looking for anyone's thoughts or opinions on this. Anyone been in a similar situation? Anyone not responded well to carb? Experience of propylthiouracil? Had surgery etc?

Many thanks in advance.

20 Replies

  • Just met a woman who was hyper, don't know her numbers but the ptu fixed her, afterwards she became hypo for short time and took levo and got tested and could stop meds for hypo and became normal without any meds. I guess Thyroidectomy is a quicker fix but then chances are you'll be hypo for the rest of your life and it's another disease that is not fun either. Good luck whatever decision you make

  • I was in a similar situation I could not take carbimazole because the main constituent of the tablets is maize, which I am very intolerant to. In the end they were making me more ill so I refused to take them! My then endo tried to persuade me to take them 'just till my thyroid stabilised' I refused telling her they made me more ill than necessary. She eventually relented and gave me RAI.

  • Yes, I think they have lactose as well as maize which many people are sensitive to.

    My friend had RAI and it was successful in that her thyroid levels normalised rather than going hypo. Her Thyroid Eye Disease did unfortunately worsen for which she has needed some surgery. However, she feels very well in herself.

    Have you tried dietary interventions? Antibodies can apparently be reduced by 100% gluten free diet. I've also read that 200mcg selenium supplement can help reduce antibodies.

  • This sounds very similar! Did your endo say you had to wait for the levels to get to a certain level before the RAI though?

  • No. I was never told what my results were.

  • reject RAI totally whatever you do

    far better to opt for surgery but be warned you are likely to find that afterwards you will need NDT /Natural Dessicated Thyroid as a replacement hormone and not the chemically produced Levothyroxine

    have you looked very carefully at your diet and lifestyle with everything from water supply , cookware ,smoking etc ...........because the toxic effects of heavy metals like mercury , aluminium or stuff like fluoride all have devastating effects on the body

    My husband had severe Graves and was warned by his Endo that RAI was far too dangerous in anyone under 40 and as many on here and other thyroid forums will tell you the effects of RAI can be devastating

  • If you don't mind me asking, why would you recommend to reject RAI?

  • Try p t u propylthiuricil not sure if I spelt that right. Cholesteum a powder which they use for reducing cholesterol slows absorption of T4. I had surgery wish I hadn't. Good luck x

  • Many thanks for your responses. I think I appreciate whatever treatment I have there is a possibility I will go hypo. There's just so much conflicting info on the two. I will give the ptu a try but things are so debilitating as they are just a small improvement would be very welcome.

    Diet and health-wise I think I am quite good and have always led a healthy diet for my training. I did see a dietician following diagnosis but wasn't convinced.

    I am probably leaning more towards surgery but I still don't understand why there are so many horror stories about RAI, surely the outcome is the same? Xxx

  • No, the outcome is not the same! My sister waited for her thyroid to go under active itself before she started levo. It did no good and we both foundan endo willing to prescribe NDT unfortunately he is not allowed to prescribe to new patients.

  • The Tayside report done many years ago said with RAI all are hypo within 5 yrs wheras in skilled hands surgery is 10 years

    With RAI you have to be separated from children and family for about 2 weeks

    do you really want to be radio active ?????????

    RAI damages more than the thyroid its a quick fix for the medics but a long life of struggling for you

  • Hi Em, I had to stop Carbimazole because of side effects. I didn't want surgery and opted for RAI. I didn't have any problems with it & was best thing I did. I started Levothyroxine approximately 3 months after RAI.

  • I came across the mention of Graves while researching L-Carnitine. Might be worth researching or asking others on the group whether this might be helpful?

  • read about natural healing, for stopping your autoimmune disease..this is what i would do before my thyroid is destroyed, when the problem is with your immune system. Dr. Mark Hyman ..stopping autoimmune it..there is also a Graves expert, who's name i don't recall, who knows how as well. This is what i am doing. I would stop all dairy and grains for now.

  • I was hyper due to a large nodule in my thyroid. As it wasn't known for certain whether the lump was malignant or not, I was advised to have a partial thyroidectomy. Whilst waiting (a very long time) for surgery I took Carbimazole, which made me really unwell, and I just refused to take it eventually. I had an episode of Paroxysmal Atrial Fibrillation, which the Endo thought was down to my hyperthyroidism and he prescribed Propylthiouracil. I tolerated that much better, although I reduced the dose a couple of times myself. I finally had surgery and the lump was thankfully benign. I am now hypothyroid and just cannot seem to get the correct 'mix' of medication, resulting in my feeling continually unwell. Though I continue to search for the 'magic elixir' which will make me feel human again!

    The problem is, I don't really believe I was particularly hyper on the first instance. I felt perfectly fine and dandy, but an anaesthetist just noticed a small lump when I was having unrelated surgery. Oh how I wish he'd never noticed! I certainly hadn't! I am sorry to be so negative, but apart from the propylthiouracil, which gave me a very slight respite from feeling awful, I just feel the hyper medications, the partial thyroidectomy and the Levothyroxine,I currently take have all given me symptoms of hypothyroidism, weight gain, swollen feet/ankles, exhaustion, no resistance to infections, pains in limbs, afib (again). From beginning to end this has been a nightmare! I wish I'd known then what I know now, as they say.

    My only thoughts are that you have so much more knowledge than I did. My advice would be to keep on top of things and question everything, if you're unsure. It also wouldn't hurt to get another opinion from maybe one of the therapists in the list you can request from Thyroid UK. I am in the process of doing that right now. I wish I'd done it earlier!

    Good luck

  • HI Em,

    I am no expert... but I was diagnosed with Graves' disease 9 months ago, I have been on Carbimazole since slowly reducing the dose till 5mg per day ... that finished a week ago when my blood results were .... Normal ! Yeah !

    I worked very hard to save what I regard to be a perfectly healthy thyroid , which

    was only knocked out of kilter by my immune system attacking it.

    I was horrified to be told RAI or surgery would be the best solutions by my GP !

    so I set out a plan to use all the supplements I was advised to take on this site.

    I read a reference to L Carnitine and did my research ... I suggest very strongly that

    you do that too.... I cannot say for definite that it has cured me ... but I am pretty

    positive that the combination of supplements plus L Carntine .. weaned me off Carb

    and I seemed to have kicked my Graves right in the butt !

    It's worth a try... before you go down the road that many others have .. and regret

    being so radical. My cousin had her thyroid removed many years ago and has

    unfortunately been ill ever since due to becoming Very Hypo with complications.

    I wish you good luck and hope you do much reading on the subject before electing for

    RAI ... or indeed surgery ... it is not always necessary.


  • Hello,

    Many thanks for your reply. It is great to hear after nine months you are back to normal - congratulations! I would love to be able to do this and hearing the stories of users on here it is something I am exploring.

    I have been very fortunate with doctors and my endo. I have had countless appointments, blood tests and time in hospital when they have wanted to keep an eye on me. It is really sad to hear some of the experiences of people on here who have not been as fortunate. I will have a chat with my endo again, taking on comments made here, to hear her thoughts. She suggested the best thing for me would be surgery.

  • I find the best way to dump T4 (when I OD on Thyroxin) is really hard aerobic exercise. Do a couple of aerobic classes every day, running, swimming, and see if you can reduce your T4 the natural way. You may be able to get the carbimazole dose down and hence get away from side effects.

  • Hard aerobic exercise is something I would absolutely love to do. I had a very active and healthy lifestyle before this - running, cycling, training and playing competitive sport - however I am struggling to make it out of the house each day. Think I will need to rely on other methods initially before I can go back to doing that.

  • I have just posted a reply to someone else who was contemplating an operation for hyperthyroid. Along with extra information specifically for you, the gist of what I said to her was ...

    surgery for an overactive thyroid is so 'last century'! particularly without doing other investigations first. So much more is known about controlling or deactivating autoimmune disorders nowadays. Whilst your medical professionals may not tell you about alternative methods outwith their personal experience, do investigate all your options AND the effects you may/will suffer after surgery - they do not stop at going hypothyroid. My aunt had her thyroid removed and ended up living the rest of her life with a tracheostomy, as a consequence. I'm not saying that that is a regular occurrence just part of the bigger picture you need to look at. RAI will, of course given its nature, increase the risk you have of getting cancer.

    Although this site isn't discussing thyroid issues it is concerned with resetting the immune system, just one area you should be looking at. This one is about diet (make sure to take omega 3s for your eyes, if nothing else) This one discusses the connection between leaky gut (something that can be cured with live kefir) and graves disease though it doesn't discuss the actions of T1 and T2 the part they play in autoimmune disorders This talks about natural alternative options including my favourite cure-all turmeric and this one naturalendocrinesolutions.c... the benefits of CoQ10 (the best form of which is Ubiquinol)

    There are, of course, many more sites & suggestions available but you'll have gathered by now that my answer to your original question is neither ;)

    Struggle as you might to get out of the house to exercise, have you thought about bringing it inside? Take a look at the benefits of rebounding Research has shown it to be better for you than any of the exercise methods you mentioned above (except there is no group bit) and, by getting your lymphatic system going, it flushes all the toxins out of your body as well. You just need about as much floor space as a modern armchair takes up in order to set up the trampet. This video

    shows some good starting exercises although you don't have to get above the health bounce (which you can even do on your butt if necessary).

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