[Katherine]

in reply to: Please tell me yoru RAI story!!! #1066412

I had RAI in June 2008 (after two years of ATDs). I started taking Levothyroxine about 8 weeks later (my RAI dose was extremely effective and my thryoid was non-functioning by my check up appt 8 weeks after the RAI). We adjusted my dose a couple months after that and I’ve been "normal" since December 2008. At my appt in Dec 2009, my endo gave me the option of having my GP take over.

I don’t recall gaining or losing weight, so if I did it would only be within 5 pounds either way. Didn’t change my eating habits or anything.

Good luck and keep us posted on how your treatment is going!

[Katherine]

in reply to: no dairy products? #1070106

A friend of mine is allergic to dairy and doesn’t like soy milk so she uses apple juice. I’ve found that even the no sugar added varieties are too sweet for me. Maybe rice milk or almond milk would be a better alternative? I haven’t had either so I can’t comment on taste.

Katherine

[Katherine]

in reply to: Help me sleep PLEASE!! #1070658

My primary physician recommended that I take Tylenol PM. I only take one, instead of the 2 that are allowed, and that seemed to do the trick. She also said that Benadryl would be fine, since it has the same ingredient that’s in Tylenol PM. Ask your doctor if that might be an option for you. Good luck!

Katherine

[Katherine]

in reply to: RAI #1072239

KMB,

If you’re uncomfortable with the idea of RAI, please talk to your endo to see if ATDs are an option to try to go into remission. My endo let me try ATDs for 2 years, until we realized that I was unable to lower the dosage any further so remission was out of the question.

I had RAI done in June 2008 (almost a year already!) and have to admit that I was really scared of it as well. For me, it has gone so much better than I ever would have expected. My endo did take me off ATDs beforehand, but it was only for a few days. I started taking thryoid hormone in early August, had it lowered slightly in early December and I’ll go in for a blood test at the end of this month. I didn’t realize how sick I was, even with my levels appearing normal for almost 2 years, until now. For me, the replacement hormone has been much easier to take than the ATDs. I truly started feeling "normal" around 5-6 months after RAI.

Everyone has a different experience so I’m glad you’re on the bulletin board so you can make a decision that is best for you. Have you expressed your concerns to your endo? Sometimes it helps to go straight to the source so they can help you make an educated decision.

Good luck and keep us posted on how you’re doing.

Katherine

[Katherine]

in reply to: To do RAI or not to do RAI…can I hear from those who have? #1073827

Hi Catherine,

Here is my story in regards to weight: I was one of those who gained weight while hyperthyroid — about 10 pounds. I started taking ATDs and gained another 10 pounds. As we started to get my TSH back to normal, the weight slowly came off. I don’t excercise (bad, I know, but I was SO tired all the time) and I didn’t change my diet too much after being diagnosed. Out of the 20 pounds I gained, I eventually dropped 15.

After 2 years on ATDs, I decided to have RAI done (June 2008). I lost about 5 pounds after RAI and before starting the synthetic hormone (Aug 2008). I gained it right back but haven’t gained any more. So, my net weight gain through all this is only 5 pounds.

As far as getting the dosage figured out, my inital dose was a little high so my doctor changed it in Dec 2008. I’ll go in for a blood test in late May/early June to see if this gets me to where she wants me to be. Overall, though, I feel so much better on the synthetic hormone then I ever did on ATDs. It’s really easy to take and very affordable, so don’t let the idea of having to take a pill every day stop you from choosing RAI.

It’s really up to you regarding which treatment you choose, as long as your endo can provide you with guidance along the way. I was so scared to have RAI done but in hindsight I’m very happy with the choice, especially after trying ATDs. The nice thing about the ATD treatment is that you can always change your mind and go with surgery or RAI if it isn’t working out.

I know other people on this board haven’t been so fortunate with the weight gain and having an understanding endo, so it’s important that you hear their stories too. Hopefully it’ll give you an idea of what to expect, although your experience could be completely different.

Good luck,
Katherine

[Katherine]

in reply to: Touch #1074951

I’m sorry to hear about the problems between you and your wife. While I’m not married, I will admit that I had no desire to date while on ATDs, mainly because I never felt well and was moody all the time. I didn’t want to put someone through that if I didn’t have to. I’ve also lost a lot of friends in the last few years because they couldn’t understand what I was going through and just thought I had become flaky because I would never show up to anything.

The healing process can take a long time. Even though my labs showed that I was "normal" for about a year on an ATD, I never felt that way. I had RAI in June of this year (after two years on ATD) and now realize what I mess I had been. Once your wife is feeling better she’ll be thankful for your patience. Be there for her if she needs it, do as much around the house to let her rest, and try not to take too much of it personally. My endo also said that I shouldn’t make any huge life choices within the first couple of years of being diagnosed and now I understand why.

Katherine

[Katherine]

in reply to: I need some help making up my mind. #1075420

Hi Mike,

I was diagnosed in May 2006. I’ve been reading the posts on this message board since then but this is the first time I’ve posted. Here’s my experience:
I, too, was concerned about killing off one of my body parts at the age of 29. My endo was very supportive of my decision to try for remission. For 2 years we were able to gradually reduce my ATD dosage but I reached a point where we were unable to lower it any further. At that point we decided to do RAI, which I had in June of this year. While I’m still at a point where we’re trying to figure out my replacement hormone dosage (started in early August), I have to admit that the RAI process was nothing like I imagined — It’s been much easier than I ever would have guessed! I don’t feel 100% yet but, knowing what I know now about RAI, I kind of wish I’d done it sooner. Those were 2 years lost on a treatment that didn’t work. I also had a huge goiter during that time, which RAI wiped out in a matter of weeks.

Good luck and keep us posted about what you decide to do.

Katherine

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