Posted , 9 users are following.
Hi there,
I am new to this group but have been looking at some of the threads and decided I am going to post on here.
I have just got back from my consultation with my Endo for my Graves' disease.
I have had this now for 2 years and am currently on carbimizole 20mg.
We have now discussed that in 2 months time we need to make a decision whether I am to have the surgery or the radioactive iodine treatment.
So what I'm basically after is any body out there who have had this treatment and what your stories are.
I have a 2 year old son so the RI isn't my first choice but neither is the surgery.
I'm all very confused, worried and just fed up with it all to be honest.
Any help/advice would be great.
Thank you
X
1 like, 23 replies
fern12
Posted
The main thing to remember is that you may always refuse.
I never have trusted the doctors to adequately treat the hypothyroidism that will result after either of those options. I have a neighbor who had his thyroid removed and he is always suffering with hypo symptoms because his TSH is never high enough to warrant more supplements in the opinion of the Endos.
becky84
Posted
I suffer from the eye disease also, however they said they would regulate this by me also taking steroids.
However I'm a smoker and they will not do this on a smoker apparently because it makes it worse.
I don't know what to do, I just thought my carbimizole would regulate this as that be enough I hadn't even thought long term.
fern12
Posted
You just have to stand up for yourself. They can't force it on you. In the end you have to take charge of your own health. Study up on what you can find out, and try to work reasonably with your doctor, but don't let him bully you, either.
I have written about my ordeal elsewhere on this site and others, if you care to read more.
jane32290
Posted
I too have an overactive thyroid and have been advised to have the RAI as is the second time that I have suffered with this. I was started on 20 mg carbimazole which I had been taking since august. on my second visit I saw a different doc who again suggested RAI which I refused . She told me that the thyroid blood test levels hadn't changed and that she wanted me to go on 40mg . I refused to take that high a dose as my symptoms had got a little better i.e. palpitations were not as bad so she agreed to keep me on the 20mg. I then seemed to slip through the net and didn't receive a letter for my next app. So I phoned and was told that I would never have got a letter as the doc hadn't put my review request in!. was given app over phone , had bloods done on same day as app and saw original doc ( RAI mentioned again) doc said would phone with blood results . Waited over two weeks and had to phone hosp to see if results were through . doc phoned me back and said I had gone hypo and said was faxing a presc to my docs for 5mg tabs. I wonder what would have happened if I had been taking the 40mg ?? . Anyway had app yest and saw a diff doc yet again who was virtually trying to bully me into the RAI although he told me my bloods were now fine. Said I would be on carb for rest of my life?? and that as I am 56 would be detrimental whereas if I was in my eighties it wouldn't matter as wouldn't be on it long !! kept pressing me on why I wouldn't have the RAI . Said my cholesterol was 5.7 and that with my high bp the thyroid would cause complications although this had never been said to me before . think he was trying scare tactics .Anyway he said come back in three months time and stay on 5mg. Hope I don't see him when I have next appt.
fern12
Posted
veronica122
Posted
It is debilitating, for sure. I'm still working on healing, both physically and mentally/emotionally.
But if you are so inclined...and I highly recommend it...do your research. There are MANY non-invasive things you can do and take (various supplements) that can help balance out your thyroid. Yes, it may take several months. I am a firm believer that the invasive procedures are "old school" (i.e. traditional; conventional) and that they may only make things worse.
The internet has SO MUCH info!
Of course, the doctors WANT you to have these expensive treatments, as having them puts a lot of money in their pockets, too! Take your health into your own hands. Everyone's case is different, but you owe it to yourself to be certain that you feel good about your decision. Don't be intimidated, but also be practical, too. For example, if you smoke, PLEASE consider stopping...it is NOT helping your health issue one bit!
Also, there is most definitely a mind-body connection. Try to remove the stressors in your life and do things like counseling, meditation, and/or prayer. This may be a good time to re-evaluate your lifestyle and make the necessary changes that will help you live a happy, peaceful life.
And continue to use this forum to talk to others with similar issues. It's wonderful to have an online support group to talk with!
Much success!
Veronica
glynisrose
Posted
linda187
Posted
Since your lab tests are all normal now, I would take a very low dose of it if you are going to try this and you can probably decrease your Tapazole even further.
For me, I knew I would never consent to surgery or RAI and it has been belted out to me several times even when my results improved and I had no symptoms and was on a low dose of meds. I think physicians "follow the herd" and lack the ability to think in "common sense".
Bopeep
Posted
becky84
Posted
Thank you for your reply.
Wow, thank you. Glad your feeling ok since having the RI on Wednesday. I have a couple of months to decided what to do regarding my thyriod.
I would prefer to do the RI however as u may have seen in pervious post I have a 2 year old and I don't think it's going to be easy, however I really don't want surgery but having my little boy I think that's the only option.
I didn't think it would come to this now, I thought all my levels were getting better but recent ones have shown that it's never going to go away now so hence the option now for the next step.
What have they said to you regarding side effects? I'm worried about them, I'm worried about losing/putting on weight. Lots of things.
Thank you for ur help and info
Bopeep
Posted
The side effects well to be honest with you they have not told me any thing I new when I got home on wedseday a few houres q later I felt sick I new it was the tablet I had because it was the same sickness that I had with the thyroid meds that I had to stop them but since my gp had given me the anty sick drug I am a lot better I don't think you have anything to worry about love it will be better then surgery every one is different some people can take meds some people carnt I am just one of theme that carnt take meds I think there is no side effects that I have heard or seen on the internet that bothers me at the moment but I will let you no if I have any more side effects please don't worry think positive if you don't do something you will be very ill that is what I got told so we have no say only two things surgery or the tablet you will be better you will see love prayers if I can help you I will take care
scott15489
Posted
veronica122
Posted
jane32290
Posted
linda187
Posted
Ideally, we need something like that to use to tell our immune system to go sleep, false alarm, when we have Graves.
That's not likely to even be searched for by Researchers as long as the medical profession continues to endorse surgery and RAI as acceptable treatments for Graves.
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