[snelsen]

#1063168

Hi, congratulations to you on making your decision for your own reasons. Enjoy the Christmas season in New England! It is a very empowering feeling, giving a sense of relief, plus knowing there is treatment action being taken for the very potentially dangerous physical side effects of hyperthyroidism.

I am sure the RAI folks will chime in on their thoughts and experiences. I chose the surgical route, so I can’t say much, except that I wonder if you are not going to be very hungry if you limit yourself to only hard candies???? From my surgical experience, I had a spaghetti dinner with salad the day after surgery! I was so hungry! But that is a little non-issue that you can check out or figure out.

However, I am concerned about your plan for you eyes. I strongly suggest that you DO take the prednisone to reduce the swelling in your eye. It sounds like you have not seen a neuro-ophthamologist yet, and perhaps TED (thyroid eye disease)has not been mentioned to you. But-if you eye is wider now, another way to look at that is that it is pushed forward a little bit out of the orbit, or eye socket. That may be happening because the eye muscles are being attacked by antibodies, causing swelling, or fibrosis, in one or more of the eye muscles. BUT-for whatever reason, when it gets crowded in the orbit, there is more pressure on the cranial nerves in that area, most specifically the optic nerve. And that is not good. But I am not really speaking as a medical person, I am speaking from my experience from the past two years with TED.
I have learned from the recent conference, that the incidence of TED is a bit higher after RAI, so that is another consideration. This is a good thing to further discuss with your endo, perhaps get a referral, or ask around, or use the references for finding eye docs who are familiar with TED in your area-get a baseline exam. They will do a sensory-motor
exam, visual fields (by a machine, not the wiggly finger exam) and some color recognition, plus a bunch of measurements.
I think the fact that your right eye is 4mm "larger" that your left eye, deserves further discussion.
Look forward to hearing from you about this…
Shirley

[gatorgirly]

#1018191

Hi all. I haven’t been on here in several months – been busy with my exciting and wonderful new job as of June. Stress level is at an all-time low, and I made the decision to finally go ahead with RAI on January 14, 2011. I originally was leaning heavily toward surgery, but decided at 26 years old and in otherwise great health, the risks outweigh the benefits. Not to mention the time I can’t spare to take off from work unless I spend Christmas alone in Florida instead of in New England with family and friends. So RAI it is.

Just a quick debrief – I was diagnosed the first week of February 2010 after a severe heart palpitation scare that landed me in the cardiac ER and later the cardiac observation unit for a night until I got the proper diagnosis and an endocrinologist. We have adjusted my meds (currently propylthiouracil 50mg 3x day and propanolol 10mg 3x day) and when I had to go off the PTU for my thyroid uptake scan, I almost ended up back in the ER. Endo says I am the most severely hyperthyroid patient he has ever seen, and is recommending I stop taking the PTU only one week before RAI because he worries about my becoming very hyper in those 7 days. My bloodwork has finally come back within normal limits, but that’s because I take 9 pills a day and of course, come February, the risk of liver damage means the endo wants me off the PTU very soon. He will see me 6-8 weeks after RAI for bloodwork and follow-up, and says there is a chance I will need to repeat the RAI because he is recommending a small dose (not sure why, since he says I am severely hyper, maybe because I’m young and petite?) but says the radiology folks will make their own judgment on dosage when I get there (I work for the hospital so I have to have it done there for insurance purposes as opposed to my endo’s practice’s radiology dept.), which is somewhat annoying and nerve-wracking.

I’m not nervous about the RAI, mostly just annoyed that I have spend three days in isolation without my dog or boyfriend. Endo wants me to start taking prednisone 3 days before the RAI because my right eye already is 4mm “larger” than my left, but I had squinty eyes to begin with so now I actually get compliments on my big, green eyes.

I guess I’m just looking for advice, tips, suggestions, etc. He is recommending the complete 72 hours in isolation, sucking on hard candies to reduce throat pain, but not much else. I assume the radiology folks will have more instructions for me to follow.

[gatorgirly]

#1063169

Thanks for your response, Shirley.

Maybe I was not clear – I am not ONLY going to be eating hard candies. I don’t have any diet restrictions post-RAI. My endocrinologist recommended adding hard candies to my diet to prevent or ease any throat pain after the procedure.

I am in no way ignoring my eyes. Apparently I was not clear there either. I AM going to take the Prednisone as prescribed and recommended by both my endocrinologist and neuro-ophthamologist, both of whom I will see once more before the RAI procedure. My eye symptoms are very minor and while the cosmetic appearance greatly concerns me (being a 26-year-old female in a high-profile job), I have been assured by others with TED and by both the endocrinologist and neuro-ophthamologist that considering how severe my Graves has been, my eye problems are hardly problems at this point and require no treatment except monitoring. I see the neuro-ophthamologist once a month to monitor any changes, of which there have been none in several months. As I mentioned in the original post, I will be taking Prednisone before, during and after RAI to reduce the potential effects on my eyes.

[snelsen]

#1063170

And maybe I did not read carefully enough! So glad you wrote, and delighted you are proceeding with your plans and your excellent health care. Sounds like you have chosen good docs, and moving toward to getting this TED/HYPER part of your (and my world!) to recede in your life! Look foward to hearing from you! Glad you are supplementing the hard candy with food! (: Equally glad you hare taking pred. I have had it several times, surely not my favorite drug, but I sure had a lot of energy when I took it, but not fond of the feeling I had of feeling kind of antsy ( if that is a word.) I was on high dose of 60 mgm for a month several different times.
always helped my double vision and general vision when I was on it. I have graduated from that part of TED, though!
Shirley

[Bobbi]

#1063171

Ok. One recommendation is that you be sure to drink adequate amounts of water. RAI is very water soluble, so any that does not get captured in a thyroid cell will soon be eliminated from the body via urine, sweat, saliva. That typically happens within the first two or three days. So drinking adequate water means you are helping to flush the excess out more quickly.

Sucking hard candy helps to stimulate saliva, which helps in that same way.

We are typically told to double flush the toilet, use plastic/throwaway cutlery, etc. to avoid contaminating things with the slightly radioactive saliva. These are all precautions to help others avoid contact with unnecessary radiation. If you are isoating yourself voluntarily, these steps might be unnecessary.

In general, it is recommended that we keep a distance from others, not necessarily isolate ourselves. When we hold pets — especially small ones, we tend to hold them up by our neck area. This is not good. But if you have a pet that does not demand cuddling, you might not have to give it up for even the three days, if you can keep some distance. For example, I have big dogs, so it wasn’t necessary for me to hide from them.

I do wish you good luck with your RAI. I hope you are well again, soon.

[gatorgirly]

#1063172

Thank you, Bobbi. All those tips were helpful. Unfortunately, my dog is small and very cuddly, so having him around but keeping his distance is not an option. He’ll spend the weekend being spoiled and hanging out with the guys.

I wasn’t told (yet – I assume the nuclear radiologists will give me instructions) about drinking lots of water. I’m big on drinking water and not much else, so that will be easy.

[TweetBird]

#1063173

Gatorgirly, Just to help put your mind at rest, I had RAI and never felt any pain afterwards. Good luck!

[Author]

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