I am lost!

Help please? this is my second bout of hyperthyroidism, Graves, it went into remission last time after taking carbimazole for 18 months, about 8 years ago. I have had my 1st appointment with a new endo in a new hospital and I'm now on 40mg x 3 propanolol and 30mg carbimazole. However endo said next time I see him he wants me to decide on either surgery or RAI. I'm not sure I want either of those as I don't then want a lifetime of being hypo. Any advice much appreciated on either of these procedures or long term effects of stating on carb. Hate all these symptoms though!

14 Replies

  • Welcome Cal123,

    I am hypo but and members who have been in the same situation as you will respond in a little while with their experiences.

    You are right to know all of your options, so if you email louise.warvill@thyroiduk.org.uk and ask for a copy of the Pulse Online article by Dr Toft who was President of the BTA, and the question regarding carbizamole you will see what his response is which I am sure will reassure you.

    We cannot be bullied into ops, except of course if cancer was also diagnosed.

    I hope you feel better in a short while.


  • thank you Shaws, I've sent an email for the info. You are right, I wont be bullied into such a big decision. :)

  • If it were me i would Google Graves, natural treatment and there is a Graves Disease online expert, i know that i have read of years ago. It is autoimmune and i know they tie this to our diets many times..food allergies and sensitivities, food additives, fluoride etc.. I have Hashimotos and have been hyper and hypo and it is debilitating. I know i have read that you do not have to have RAI or Surgery to handle this situation. It is 2 am here or i would continue..maybe tomorrow.

  • Hi Faith63

    thank you, I've been looking at natural remedies and diet and been doing tons of reading. I actually asked my endo about links to diet, digestion and building my immunity and he completely denied any link! the more I think about that the more angry I am. Of course it's linked!

    What I understand so far is that GD is an auto immune disease that affects the thyroid, so even if the thyroid is removed the GD is still there so the symptoms are being treated but not the cause.

    I do appreciate that the removal can make life a whole lot easier, and may be absolutely necessary for some, but right now I'm doing all the research I can.

  • Good for you for taking an active roll in your health..many are not, asking the same questions over and over again and being undertreated by their doctor. Your doctor is typical of most. Interesting how this info is all over the internet and nothing new, really. I am furious at my doc's..5 Endo's, who didn't know anything about Hashi's or its symptoms. I had to self medicate.

    Yes, like Graves, Hashi's is autoimmune, both are, with symptoms and other illnesses to follow. My Aunt had RAI, 70 years ago!! She went on to get some kind of burning mouth illness, lost her sense of taste, got Hodgkins Lymphoma and got crippled by Osteoporosis. Based on her TSH, the took her off thyroid meds years ago. Having your Thyroid disabled, is not an easy answer, because the doctors don't know how to treat hypothyroidism!!! Look at all the people on here, mostly hypo and ill for years. I would rather be in your boat. Your thyroid still functions and you have hypo of remission and recovery! I don't at this point. I have exhausted all avenues now. Very upsetting.

  • Sorry for the delay, not been on here for a few days! thank you Faith63. My gosh, that's horrendous for your aunt! I told my GP this morning that I am going to manage this with Carbimazole, diet, exercise etc, don't think he was too impressed but he understood, so we'll see how it goes. If it wasn't for you guys and all the info I've been reading, I don't think I'd have been as confident in telling him I don't want to be hypo. This almost seems like a 'political' illness, lots more funding and research needed especially into hypothyroidism and treatment.

  • Hi I am in a similar position to you do your research and make a formed decision I have refused both TT and RAI that was my choice. Do not let them bully you and they will try because it is an easy option for them.

    I would say however that lots of people have had TT or RAI and never looked back so they will be able to give you more information.

    My mother had RAI and she changed so much, she also had breast cancer so I refused both have their risks.

    You can only make a decision after a lot of research, change of diet vitamins and minerals all help. You will have to be strong and not easily frightened because pressure will be put on you. There are a lot more knowledgeable people on here than me so listen to them I did and although I am hyper again I don't feel ill. I think it was my fault I fell of the wagon so to speak and got lazy about taking the vitamins and L Carnitine etc. It is something I won't be doing again.

    Good luck


  • Hi Elayne

    thank you, I will be doing a lot more research. You mention LCarnitine and vitamins - are these ok to take with meds? any recommended places to get them and what would be the best vits to take? I've been reading about B1 thiamine, B6, C, D, E, zinc, calcium, magnesium and selenium.


  • Hi Cal

    I take L Carnitine vit D3 B complex selenium Omega 3 Bugleweed and Lemonbalm. My vit D was really low a couple of years ago I now take 2000iu daily. It doesnt affect my meds in fact it seemed to get me back to normal quicker and I stayed in remission fine it is only in the last few months or so I started to get a bit lazy and kept forgetting to take them. This worked for me it might not work for you everyone is different.

    I don't know what my levels are at the moment because I haven't seen the results of my blood tests but I am going to get them on Monday when I go for my six week blood test.

    There are lots of websites some good some not good at all. Most of my information I have got from on here or the Natural Endoctrine web site. Found it on google.

    Please be careful there is also and excellent woman called Svetlana something and doctor Amy Miles is excellent too.

    Just remember it is your body and your decision

    Good luck


  • Thanks again Elayne.

    I wont start taking any supplements yet, but will start looking at my diet. Its not too bad anyway but there's room for improvement.

    I hope your bloods are ok on Monday, good luck

  • Hi Cal123

    My bloods came back as now within the normal range. That took only six weeks I have a feeling my bloods were not as high as the GP implied.

    So now I am one very happy person at the moment. I still have to go to see the Endo but doubt if even he will dare to suggest any further treatment.

    Hope you are feeling well


  • Hi Elayne

    That's brilliant news! Keep doing what you are doing. Who needs endos eh? :)

    Physically I'm ok if I don't overdo it at the moment. Just got to get rid of this anxiety!

    Stay well


  • Hi Cal,

    I found your post really interesting. I had a total thyroidectomy 9 months ago. I was 23 at the time and had suffered with Graves for 3 years. My story was slightly different to yours in that I was never well controlled and never went into remission, and had to have RDI or surgery before finishing Carbimazole.

    I completely understand your comments about not wanting either procedure, and I think it's worth looking in to natural treatments. However, I have to say that I personally tried every single thing I could find and nothing worked, in fact, a lot of them made me very ill, so treat them with caution. Especially if you decide to stop taking Carbimazole.

    I personally chose surgery over RDI as I was 23 at the time and had heard RDI can affect fertility (in females), with that already in question after a long, uncontrolled period of Graves, risking it wasn't an option for me. Whilst I don't want children now, I do someday. I was also warned that RDI is not as effective in cases of extreme hypothyroidism, as mine was.

    I won't lie, surgery wasn't a walk in the park and it hurt, but it did stop all my symptoms.

    I know you don't want either option, but you should consider them regardless, the fact is, they might not be wanted but they may be necessary for your health and well being.

  • Hi Becka_Anne

    Thanks for your reply and I am glad your symptoms have stopped now. Are you coping ok now without yours? I do appreciate your advice and I know I have to keep an open mind, as my family keep reminding me (but they do keep me grounded!) :)

    I haven't totally dismissed the idea of surgery but only if it was absolutely necessary in the future.

    Since writing the post I have been doing non stop reading, talking to others and learning. I'll continue to do so, even though my symptoms have subsided quite a lot on the Carbimazole, because I would still have GD if I got rid of my thyroid.

    I realise it effects all of us differently but I am concerned about going hypo and then trying to deal with a whole new set of symptoms and treatment.

    I've started a GF diet this week and my plan is to try this for a couple of weeks and see if I feel better, if not I'll then try a dairy free diet and so on.

    So I suppose I'm looking at trying to improve my whole immune system rather than concentrating on my thyroid alone.

    It's not going to be easy but worth a try at this point.

    take care


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