[GDRobM]

#1019840

Hi everyone, Short history, had GD for about 4-5yrs before diagnosis 19 months ago and been on carbizamole (currently 15mg per day but been up to 40mg per day). 37 yo and male. Have not had an easy time with any of this, but having read this blog recently, you have all made me feel like there is support out there. None of my friends or family seem to have understood GD, and not having been easy to live with I am single again. A bit of a rollercoaster you might say! Still, I have become a bit zen about it all, which is good, despite getting sporadic symptoms, high heart rate, anxiety, heat issues (although it is now summer in Australia) etc etc.

I have decided as no real improvement to have have RAI on about 5 Feb. I have minor TED. I have been told that i will need to take steroids before the RAI and for about 2-3 weeks after it. Has anyone got any idea what the side effects of the steroids might be? My endo has told me the steroids will make me gain weight and get hungry, which sounds like a dangerous combination. Also, I have started exercising daily, some weights and riding my bike to and from work each day. After the RAI, i am worried I might not have enough energy to do this, and that worries me because the exercise really helps how I feel. How have people found their energy levels after RAI, I have read a lot of the posts about it but I am still not entirely clear.

This is a fantasic site, I wish I had found it earlier, I am sure it would have saved me thinking I was losing my mind sometimes! Keep up the good work!

Rob ” title=”Smile” />

[Bobbi]

#1074478

Hi, Rob, and welcome to the Board.

Side effect issues regarding the steroid. Obviously, the dose you are put on will matter. Also, the length of time the doctor wants you to take it will have an impact. For the best explanation of the side effect issues possible, you might want to talk with your local pharmacist (is it "chemist" in Australia?) You could also use a search engine and look up "prednisone side effects," although I don’t necessarily recommend it: the one I just found had truly ugly photos to show the worst of the possible. The one thing the article did state, however, was that not everyone who takes prednisone/corticosteroids produces all ofthe side effects. (You want to be sure you are searching a corticosteroid, and not an anabolic steroid, btw. They are different beasts.)

As for your energy levels post RAI. One of the problematic aspects of things is that you will have to go, briefly, hyperthyroid again and that might take away your energy for a while. Typically, our doctors stop the ATD (like carbamazole) a week or two before the RAI. (And, sometimes, stop eating certain types of sea food which are high in iodine.) But stopping the carbamazole will mean you will feel hyper symptoms returning. Also, about one week after RAI , the thyroid cells that are damaged by the treatment start to die off release any stored supplies of hormone into the body, pretty much all at once. So for a few days, starting a week or so after RAI, there will be an even greater level of hyper symptoms. Then we gradually feel them subside as the treatment effect is more fully realized. But how long that period will be for you is not something predictable.

Sometimes the doctors start up the ATD again for a while after RAI to help with the symptoms, and sometimes they also prescribe a beta blocker for the same reason. My endo did prescribe the beta blocker, but not the ATD after RAI. But a return to carbamazole might limit your energy problems to a much shorter time. (Not all doctors do prescribe the ATD again — mine did not. So you might want to discuss this with your doctor, if only so that you are better prepared psychologically for the experience.)

My own experience was that after about three or four weeks, I was feeling more normal again. My endo was alert and started replacement hormone just as I was going hypothyroid, about six weeks after RAI. Getting the replacement started at the right time is also an important factor in how soon you will feel your normal energy levels return.

I hope this helps. And I wish you good luck with your treatment.

[elf]

#1074479

Hi Rob,

Steroids – my Endo never even mentioned them when he was scheduling RAI (3 years ago). I researched on the net myself and called my GP and she called my Endo and the both of them finally ecked out 10 days worth of steroid pills – one a day 3 days before RAI, and 7 days after RAI. I’m not sure if those 10 days worth of pills helped me in any way. I didn’t feel anything from them.

Eyes – my TED just started a month before RAI – one eyelid started swelling and the eye started acquiring glassy look. Anyway, went ahead with RAI, because I myself wanted to get over the disease. Now what happened after I personally think would have happened to me anyway, regardelss of the treatment – so I don’t blame RAI. My eyes started feeling slightly sandy right before RAI, and kept on going after. 3 months after RAI, when I had that last hyper spike when my thyroid was finally dying, the eyes were at their worst, too – gritty feeling, tearing, light sensitivity. I turned hypo 5 months after RAI, and they eyes got better about 8 months after RAI, only the tearing kept going. The tearing disappeared about 1 year after RAI, so I consider myself healthy for 2 years already. Altogether, my eyes protruded over that one post-RAI year, but not badly, not severe TED – just mild to moderate. Since my eyes have been "cold" for 2 years, this year I’m hoping to undergo an orbital decompression surgery that would set my eyes back – the technology keeps improving, it’s not as invasive anymore.

Energy – to tell the truth, I was one of those cases who didn’t feel much difference before RAI, after RAI, and when went hypo. Surely, I felt better than before RAI because I didnt’ have the heart problems anymore. I was just listening to myself (what’s happening to me?) aftert RAI, and therefore was afraid to do much, but looking back I felt pretty much the same as I feel now.

[GDRobM]

#1074480

Thanks Bobbi & elf, having read much of this board, it will be see how things go! Again, I have to say that this board is the most useful resource on GD I have ever come across, and will get my endo to tell his other GD patients about it, primarily because I had no knowledge of what would happen to me while I was on carbimazole and what kind of ride, pyhsically and pshcyologicaly, it would be. I am in a good place with it all now, but I was not always, and like many others I felt as if I had lost my mind many times. I suppose I know what to expect if my thyroid starts dumping its contents into my body all at once. Fun and games! After the awful time I have had, I am actually looking forward to getting some stable hormones in my body, even if that takes a little while. Will let you know how I go, but thanks for the help again! I know 2 other people who have GD and have also let them know about the board.
Cheers
Rob

[DianneW]

#1074481

Hi Rob, and welcome!

Another comment about being on steroids, which will no doubt be prednisolone of some description. I’ve taken it a number of times, once even for a month in a pretty high dose, and didn’t ever have any of the feared side effects. The appetite does increase, but if you are aware that this doesn’t actually mean your body needs more food and are careful to eat your normal diet, the weight gain is not inevitable. It can cause a good increase in mood and energy at first (along with difficulty sleeping). In fact, I remember being on it once after an eye surgery, and being up running around singing about how happy I felt, when I should have been in bed resting.

Most of the really bad side effects (moon face, weight gain, acne, diabetes, glaucoma, cataracts, osteoporosis, etc.) occur when a person takes these drugs for several months or longer You shouldn’t have to worry too much about most of these problems for the length of time you’ll be on it to protect your eyes from the effects of RAI.

You’ll taper slowly off the drug, and when you go completely off it’s possible to feel depressed for a day or so while your adrenal glands are kicking in making more cortisol again. That’s good to know ahead of time so you don’t think there is something wrong if you’re crying for no reason. (I thought it was actually good to discover why people with a physiological depression can’t just talk themselves out of it).

Good luck with your treatment.

Dianne W

[GDRobM]

#1074482

Thanks Dianne, I am still looking forward to the RAI in some strange sort of way, even though it’s scary. And it is good to know some of the possible things that I might feel (such as the sudden urge to cry, which I still ocassionaly get just on cabimazole), because to at least recognise those things is a big step in coping with them. I will let everyone know how it has gone.
Cheers
Rob

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