6 MONTHS RAI AND STILL A ROLLER COASTER RIDE

Hi there,

I know it’s tough ~ the fact is, though, that the doctor has a point, unfortunately. Believe it or not, six months after RAI is still kind of early in the process. Sounds like you’ve measured hypo and begun replacement hormone, and that CAN be a long adjustment/healing process, because there are several things going on in your body. First, you’ve been under constant assault of hyperthyroidism (prior to the RAI, and probably even for a time after RAI). Second, you’ve had a RADICAL drop in thyroid hormone levels (from above normal to below normal), and the thyroid MAY not actually be finished working to some degree. Third, you’re beginning to take replacement hormone. All of these things have had different effects on your body, and in addition to ALL of that, as your thyroid hormone levels shift (even if they’re moving in the right direction), your body goes into a kind of "shock" and removes resources from the parts of the body it deems "unimportant," like the hair and nails ~ things your body does not need in order to stay alive. So the fact that your hair is coming out a lot is a sign that your thyroid hormone levels are MOVING, but doesn’t indicate that they are not healthy. The fact that you’re feeling a little more hyper after beginning to take an increased dose of hormone replacements is EXTREMELY normal. I know that when I change doses ~ whether it’s an increase or decrease ~ I usually feel like a teeter/totter for a couple of weeks. One day I’ll feel hyper, the next hypo, and after about three weeks I settle into the "true" feeling that seems to ultimately reflect how my body is reacting to the new dose. Unfortunately, it is not a good idea to have blood tests done until you’ve been on a new dose for at least six weeks, because that’s how long it takes your body to fully acclimate and for blood test results to be accurate. For that reason, you may be doing yourself a disservice by adjusting your dose on your own. Now when you have tests run, you don’t really have the correct information on how your body is reacting to the dose you’re taking ~ because it’s been changed during that six week period. That can actually LENGTHEN the time it takes to find the right dose for you.

I KNOW it is hard and it seems as if you’ll just crumble if you have to wait one more minute to feel well, but wanting it isn’t going to make it come any faster, I’m sorry to have to break it to you. Do everything you can to conserve your resources and keep your activities limited to things that FEED your soul and fill your heart ~ drop anything that’s only a drain on you, and do not apologize for that. YOU NEED TO HEAL.

One more thing you should know. Until your levels are normal, and have stabilized, your body will not even begin to heal from the damage caused during your hyperthyroid state. So, reaching normal levels is great, stabilizing them is wonderful, but only then can the healing begin, which is yet another state of "less-than-normal," though it gets better every day. I can promise you there’s an end to this road. I know it’s further away than you’d like. Hang in.

I am more than a year out from RAI and am still working on getting things just right. I try to focus on the fact that I am a lot better than I was several years ago and that I should never be able to go back there again! That said, I feel your pain about waiting for things to work. That can be very disheartening when you start to dwell on it. Maybe writing a short list everyday of the things that you can accomplish and what was good about it might help you reflect on the getting well side of things.

Hang in there…….

ewmb

Hi sbigler – If *you* are comfortable with the direction you are getting from your doctor, then your family needs to mind their own business. ” title=”Wink” />

Perhaps it would help to have them read some of the posts from other patients on this board who have had RAI? Some people have the perception (and unfortunately, some doctors seem to promote this) that when you choose RAI, you pop a pill and everything is immediately "fixed". In reality, it does take quite a bit of trial-and-error to find the "sweet spot" for your replacement hormone that will get your labs in range — and that will get you to feeling well again.

Best of luck – please keep us posted!

Here’s the deal. All labs/clinics/hospitals/etc. have Medical Release of Information forms. Look at them like you know all about it, ask for one, then kindly insist on it if there is any resistance. Fill it in, saying in the release section,
To myself, your name and your address. Some of them have many things to check. For the lab, just check (or write in)
"lab results." For your doc’s info, ask for test results, dictated summaries, radiology dictated reports, or whatever is appropriate. You will meet resistance if you do not complete this stuff. I have a pretty good repoire with some people, and they will just do it. All they have do do is click a key on the computer. But the release forms do protect them, and you.
I am so sorry you have to go so far to get a lab draw, that sucks. They can, and legally must, provide that info to you if you sign the release forms. I am not sure about the fax, I have never been able to set mine up so that it works right at home, and haven’t cared much because of my online access. I am such an information freak, I absolutely love it. It is very reassuring to me to have a file from all my docs, and I invariably find mistakes! In the meantime, use your job and you doc’s fax #. Bet he doesn’t care at all!