Hyperthyroid ? Radio iodine treatment

Hi was diagnosed last feb and started on low dose of carbimazole, which after six weeks was increased. I then developed severe muscle cramps so had to come off of that and was then given ptu. at this point my thyroid results had improved but I only had about two weeks of feeling better over about five month period. Suffer with severe joint pain,palpitations, shakes, foggy brain sweats etc. my experience with ptu although a small dose was horrific. We were on holiday and basically could hardly walk especially after sitting at dinner, struggled to stand and walk down steps. I felt so ill so decided to reduce the dose and a few days later stopped meds altogether. That was last September and I felt much better coming off the meds then slowly my symptoms returned so I went to see an acupuncturist Chinese medicine specialist. He has managed to keep most of my symptoms under control which is great, and I only go now every four weeks. However my recent thyroid test show

T4 23, t3 11.8, tsh0.01.

The registrar recommended to have radio iodine treatment as my results were much higher than last september, but Im very reluctant to have. The registrar rather scared me by going on about possibilities of stroke and osteoporosis. I don't have palpitations since acupuncture, so wondered if that would mean that I would be less llikely to have a stroke. Can anyone let me know what they think of radio iodine treatment and any thoughts on all above. Am happy to go on with acupuncture but am of course very concerned about poss of stroke. I am a lady of 63 and have put on about 20 pounds since diagnosis.

14 Replies

oldestnewest
  • Someone who has had RAI will comment and reassure you.

    This is a link and if you cursor down to the question dated June 11, 2004 you will read of a patients' experience of aftercare.

    web.archive.org/web/2010112...

  • Hi i have just had to make the decision today whether to have rai or surgery and i have opted for the surgery. I would read as much as you can on rai and surgery and make your own decision. My endo told me today that everybody is different and what one patient will feel another might not. I have had carbimizole for more than 2 years now but it keeps coming back which we thought it would as i have graves disease. Good luck with your choice xx

  • I've been putting the decision off and wouldnt entertain it at all when first suggested only 4 months after diagnosis and Im still hopeful the carbimazole will do the trick tho my luck has never been that good. Having Grave's Im realistic enough to know it probably coming but its only been a year and every other auto-immune disorder I have seems to go dormant after about 2 years recurring now and then but generally under control so Im hoping I can delay it for a good few years yet.

    It all depends what happens when Im definately stabilised and the carbimazole is stopped but speaking to a gentleman at the hospital who was diagnosed with Graves over a decade ago, even with RAI he ended up having a partial removal so if it comes to either I think thats what i'd opt for. He was an older gentleman and spotted me straight away as having Graves sitting there skinny as a rake, trembling and obviously anxious all on my own and sat down saying 'Grave's eh lass'. Just that made me feel so much better, finally someone who understood and we chatted until I was called in half an hour later, unfortunately he was in as I left so never got to thank him. Never seen him since but he assured me he got his life back and was only there for his annual check up which was lovely, he looked so well and never knew how much his kind action meant.

    Best of luck with your decision, all I can suggest is keep googling and reading, get informed and make your decision on what you believe will be best for you long term, not necessarily what they suggest. :)

  • Hi,

    I also have Graves and have been responding to Chinese medicine but I have been taking herbs, and my doctor says that acupuncture would not have the effect alone. So you may want to try taking herbs. It does take some time in my experience - I would allow at least three months. And the big drawback is their expense. However, I have found that they are improving my overall health and I'm hoping that by doing so they will support my body so that the autoimmune problems heals up. I am fairly determined to try and avoid RAI and thyroid surgery because I have read of problems people have trying to stabilise their levels subsequently. Graves disease doesn't go away and continues to affect the thyroid so achieving stable levels seems to continue to be a challenge. However I think there are also people who do stabilise and are fine so...

    It isn't easy so I wish you the best of luck.

  • Sorry to hijack the thread but what herbs are you on please? What dosage? And do you see a herbalist?

    Thanks

  • Hi,

    I see a Chinese doctor in central London and she prescribes the herbs. She was trained in China and worked in a Chinese hospital for about 10 years. She has lots of experience of treating people with a combination of Western and Chinese treatments.

    I don't know the exact combination since all the names are in Chinese. She adjusts the herbs according to her diagnosis each time I see her. I see her about once every two weeks at the moment.

    I have regular blood tests (every 2 months) to monitor how I am doing. I am presently in the normal ranges, although my TSH is low and I have some of the hyper symptoms. The Chinese doctor takes these symptoms seriously and treats me for them. My GP believes that they don't exist because my bloods are in the 'normal' range.

  • Hi all I cant believe just how many people on here recently are refusing meds or just stop taking them before giving them much chance to work, for being hyper or with Graves.

    I keep seeing posts for people with hypo symptoms begging for treatment and not getting it. On the other hand, recently loads of hypers seem to be wanting to try taking herbs and various other treatments and yet refuse carbimazole or ptu. ( I know not everyone can tolerate it but some flatly refuse them).

    I dont want to be a scare monger but people need to consider that untreated hyperthyroidism can lead to thyroid storm or worse. An awful lot of the so called other treatments are not clinically and definitively shown to work. They may help with stress, as may diets etc however they may not be enough.

    Okay let the angry voices commence.........

  • Just to say I don't have a 'principle' against taking Carbimazole, it just doesn't make much sense to me to take a toxic medicine to try and heal my body if there is an alternative that might work. I didn't know if the Chinese herbs would work. Nor did my Chinese doctor. They don't work for everyone. I thought I would try them and see what happens, having blood tests regularly to monitor my thyroid levels. If they hadn't worked I would be taking Carbimazole or PTU in all likelihood since I don't know of any other treatment options at present.

  • Hi I agree with you especially as I was in such pain on the meds. Acupuncture is certainly helping me and will ask him re herbs to help. Do you have the name of the herbs or is it a mixture.

  • I'm sorry to hear you were in such pain on the meds. I do hope you manage to find an alternative way.

    As far as I understand it, the mixture of herbs is dependent on your specific condition. Although there is a general way of understanding hyperthyroidism from a Chinese medicine perspective there is a completely different way of diagnosing what is wrong with you and then treating it. I was diagnosed as having very low yin and therefore my herbs were geared towards increasing my yin levels for example. I had a very deep crack down my tongue, indicating low yin. As my overall health has improved and the test results returned to normal, the crack in my tongue has changed and is now much more shallow. But that may not be true for everyone or even perhaps most people...

  • I agree greenginger.

    The problem is that if, like me, you have Graves you are not offered very much in the way of treatment. I was given 18 months block and replace then told that as I had relapsed after only a month off the treatment that I would HAVE to have RAI (no reference to me suffering from TED) or surgery (ignoring my worries about an operation as I have heart failure)

    I have now TOLD her I will be trying to reduce my Carbimazole to as low a dose as possible (and no, it may not work) and at the same time I will be trying alternative treatments (that I haven't yet told her *chuckle*)

    I don't think anyone can blame us for trying other things but I do realise that some people either do not realise or choose to ignore the fact that being hyper can be dangerous.

    *typed in an unangry voice* :)

  • I also have Graves and have been on carb for over 18 months and will soon be asked to come off it and see. I am guessing that I will no doubt go toxic again and be offered RAI which is impossible due to 3 small kids or surgery.

    After having serious surgery for other things in the past and having a bad reaction to general anaesthetic, well not really wanting that either.

    I do understand trying everything possible but as mentioned before if you are thyrotoxic then there are only antithyroid meds offered. Plus they have worked for me so far and they have not made me worse or caused me pain or suffering compared to being toxic. I would take the carb above any other option anyday.

  • My main concern in trying alternative medicine has been to check blood levels every 2 months. Luckily my GP has been obliging in that respect. Although I haven't discussed my choice of treatment, he is responsible for monitoring me, so I have mostly avoided having to pay for blood tests. Since the blood results have all been travelling in the right direction (FT4 down and TSH up) while on the herbs I have stuck to the treatment. If they weren't I probably would have moved onto carbimazole or PTU. I understand the dangers of living in a hyper state, quite apart from not being able to have a life with the symptoms!

  • I am currently hyper but not yet given exact results of TFT's and in the absence of any discussion with me my Endo has apparently written instructing my GP to prescribe Carbimozole! Not very keen on taking Carbimozole and after some surfing around found that Acetyl L-Carnitine helps with hyper by reducing thyroid hormone. Lots of info on the internet and also found 2 links on Pub Med that appear to confirm that Acetyl L-Carnitine works to reduce hyper:-

    ncbi.nlm.nih.gov/pubmed/115...

    ncbi.nlm.nih.gov/pubmed/155...

    ALCAR is apparently good for energy, cardiovascular problems and neuropathy and I have all 3. Also found a website that sells pharmaceutical grade powder so no additives involved like with capsules.

    Hyper is horrific and really sympathise.

    Isis x

You may also like...