[snelsen]

#1064325

Hi teacherhelper!
It is a very reassuring feeling to have a PLAN, rather that total limbo, with your very interesting and challenging situation with no response to PTU, and unable to take meth. Sounds like you have a good endo, and you are content (well, resigned and ok with,) your decision. Anything that is an action that indicates moving forward, to that someday when you will back to your regular self, is itself, very empowering. Good for you! Re diet, try to make it a fun challenge to be on a low salt diet. Most of us (I am an exception, I hate salt!) eat too much salt. YOu might/might not be interested in a product Morton Salt makes, called, LITE SALT. But I am not sure if it is non-iodized, Now lite salt that is an oxymoron if I ever heard one, but you can check the grams of sodium against regular salt the next time you are in the store.

I don’t recall your other posts, so do not remember if you had eye issues, or thyroid eye disease. You said you were going to call your endo tomorrow, regarding RAI and prednisone and eyes, but I am not sure where you are with all that, so calling your endo is definitely the way to go! Do you have tED? Have you gone to an eye doctor?

Think of every day that passes is one more day to getting back to baseline, even if it might take a while.
Re your diet, my empathy and sympathy abound in great quantities to you while you refrain from dairy products. I love’em too!
Enjoy your trip to Wisconsin. I am "going back" to Iowa at that time.
Shirley

[Bobbi]

#1064326

I wish you good luck with the treatment, teacherhelper.

As far as the steroids taken with RAI go, there was a study a number of years ago (it was reported in a January issue of the NEJM- New England Journal of Medicine — maybe 2001, or thereabouts), that suggested that RAI taken in conjunction with RAI would prevent any temporary worsening of the eye disease symptoms that might be caused by RAI. Since then, I think the study may have fallen into question, but to be on the safe side, many doctors prescribe steroids around the time of RAI in their patients who have significant eye symtoms already.

[teacherhelper]

#1018372

I saw my endo today. We finally decided that RAI is the way for me to go. Allergic to Methimazole and PTU not bringing the levels down enough. Am starting a low-sodium/iodine free diet. Then will stop taking the PTU after my trip to Wisconsin in early September. After 10 days, will have bloodwork to determine the RAI to take and when that day will be. I am so looking forward to getting back to a healthier state and happier frame of mind! I know this is just the beginning of that process but just to look at the light at the end of this LONG tunnel is encouraging.

The diet is not very thrilling but I’ll stick to it. I love milk and dairy products but they are no, no’s. At least I don’t have to cook for any one but me. I won’t have to smell good food cooking and know I can’t eat it.

One question I forgot to ask the endo today is about steroids for eye involvement. Has anyone else had to go on them before having RAI? How long do you take them before taking the "atomic’ cocktail? I’ll give his office a call tomorrow!

Being able to make it through even a morning without having to take a nap will be a thrill. I’m also looking forward to not having sore, achey feet. I can’t wear shoes…only flip flops. Thank goodness I live in SW Florida and they’re OK in winter!

[teacherhelper]

#1064327

Thank you for your replies. It’s a relief to know that we’ve finally decided on a course of action. I’ll try to get creative with the diet as I think about it more. It’s good to know this board is here for support, suggestions, venting, and anything else that might come our way.

I did see my eye doctor in Wisconsin. She said that everything I was doing was doing a great job! I use drops during the day and gel drops at night. I will call my endo this morning to check on the steroids and when they come into play in the treatment. He is a very kind doctor and I was lucky to get him after a bad, VERY BAD, experience with a partner of his!

On to have breakfast with a little creativity thrown in!

Joanie

[Kimberly]

#1064328

Hi Joanie – The article that is cited most often is by Bartalena, et. al. from the New England Journal of Medicine in 1998. This study was mentioned at our conference last year during a discussion about eye issues. During this study, the course of Prednisone ran for 3 months. However, steroid therapy can come with its *own* set of side effects and complications, so this is a decision that you and your doc will need to make together.

As for the low-iodine diet, try Googling ThyCa, which is a thyroid cancer support group. They have a free low-iodine cookbook on their web site. My understanding is that there is no such thing as an iodine-FREE diet, as iodine is present in much of our food supply…so you have to settle for a LOW-iodine diet. I had to do this for 2 weeks prior to having an uptake scan done. (Most docs *don’t* require this, but mine did). I found that it was helpful to clear out an entire day just to cook and freeze stuff, as I found it to be a fairly high-maintenance diet. A lot of pre-packaged stuff that I had previously relied on to help get meals on the table more quickly were out the window because of the salt content.

Also, FYI, there are forms of salt that you *can* use on a low-iodine diet. Ironically, "sea salt" is usually a good choice — even though we associate iodine with seafood. Check the packaging, as the front will say something like, "this product does NOT contain iodine, a necessary nutrient."

Best of luck!

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