Have you tried a beta blocker? Ask your Dr. if you can take some methamazole too.
I had RAI for a hot nodule 12/08. It took 11 weeks for my TSH to come up and Free T3 to go down. My hyper symptoms lingered for a month after that. So you may still to deal with hyper symptoms for awhile.
Unfortunately, the Drs. don't seem to tell us that RAI is not a quick fix. Hot nodules can be stubborn to treat. Your symptoms "could" be because your hot nodule is still functioning. I think that any additional treatment is not even considered for one year after RAI.
Do you know the dosage of RAI you received?
So go ask your Dr. for some meds. You can get some of your quality of life back.
Hang in there!
Thanks for the reply. I was on a beta blocker until about a week ago but the anxiety was still so strong that he said I did not have to continue it (I stopped a couple of days ago). He also prescribed some Xanax. I have taken that a couple of times on unusually difficult days, but I seen to go from anxious to depressed and crying and I was not sure if the Xanax may make that worse. My RAI dosage was 15 millicuries. I believe he said it would have been the same dose if I would have had Graves disease. It makes me feel better to hear that the effects can linger for a while longer than I thought. I read somewhere that the effects of the treatment should be felt in 4-8 weeks but all of the information I found related to Graves disease and not the hot nodules so I guess I just assumed the timeframe would be less since not as much of the thyroid is involved.
I will ask him about the methamazole when I see him next week. I wish I understood the levels more, but I am still learning. I will be sure to get all of that information so it makes more sense to me.
So you have not gone to hypo and you are not on medication, correct? I wondered about that when it is just a nodule involved. I know I should have asked the doctor more questions, but I was convinced I had Graves disease because I had some eyelid retracition and so when he told me it was a nodule that could be best treated with RAI based on my age (52) I just said let's do it. All of the questions I had prepared for him were related to Graves and I was a little thrown off.
Thanks again!!!! It's always great to hear from someone who has made it through this.
Well, I didn't give you my WHOLE story. Just the highlights, didn't want to cause you more anxiety. My RAI was 28 millicuries.
Somewhere between week 10 & 11, bloodwork confirmed I was hypo, TSH 8.5. I started on 50 Levo even though I was still not able to sleep. One month later, I was begging for an increase. The hypo hell had hit and my TSH was only 2.8. I just couldn't function.
My Dr. told me to expect to have days when I feel "off" for 6 mo. to 1 year.
I asked tons of questions prior to RAI. I had read that the RAI will kill the nodule and spare the remaining thyroid tissue. All Drs. disagreed with this theory. They said that the remaining thyroid tissue would be damaged at a cellular level and I would need replacement T4 (Levo).
They were right! But your dose was 1/2 of mine.
Thanks for the information. I go in next week and I will most definitely have my list of questions ready. As long as I know I will eventually be normal again I think I can live with that.
Thanks for sharing.
Sounds like you are hypo.
The tests next week will most probably confirm this.
I think that same thing Deb is suggesting. I think you are hypo too.
Stella & Smilerdeb might be right too. Hormone fluctuations are just no fun at all.
Waiting a week for a blood test can seem like an eternity. You might try calling to see if you can get in earlier?
There are also a few things you can check at home. You certainly can't make your own diagnosis, you need the blood test.
Take your temperature when you are feeling bad. 101 makes me cry like a blubbering idiot.
If it is 84 degrees in your living room and you are wrapped up in a wool afghan, that's hypo.
Take your BP. Is it running higher or lower than your norm?
Take your pulse - about 60-70 resting?
Thanks for the suggestions! I will try doing some of those tests myself at home. I almost think it would be a relief to be hypo so I can start on the meds and hopefully get everything leveled out soon. I have my bloodwork done on Monday so I will try to push up my appointment with my endo if possible. I've had a couple of good days (I'll take them whenever I can get them). I also started acupuncture yesterday and I have another session today. She thinks she can help with the anxiety. I am ready to try anything at this point! (Although she wants me to give up my morning caffeine and I think I have to draw the line there--I already cut back to 12 ounces.)
Okay, I just got a call from my endo and he said my levels are all normal and that I will get my blood work again in one month. They told me I did not have to keep my appointment tomorrow, but I told them I would be in because I have some questions. I am doing better today, but I never know from day to day how I am going to feel. If my levels are normal does this mean that the anxiety is not necessarily due to my thyroid problem? I think my husband sounded a little nervous when I told him that my levels were normal.
I'm happy to hear someone in kind of the same boat as me. Well, I mean, not happy, but relieved a little. I have graves. I already had my radiation. I've been feeling horrible. Anxiety, and odd heartbeats here and there. I'm on a couple things from the doctor, and they've basically given me stranger symptoms, and much fatigue, so I thought I'd gone hypo. It's been about 7 weeks. Went for labs last week, and had my endo appointment yesterday, and I'm still hyper!! So, when I go hypo, then I can start levo, but that could be a while. It's 4 weeks till my next labs, and 6 weeks till my next appt, so I'll be 13 weeks out. I wonder if the hypothyroid condition comes on quickly, and how fast you can ramp down from the anththyroids, and up on the levo to get normal. I dont' really have whole good days. I do get about 3 or 4 hours in the morning where I can focus a little at work. I'm a praying man, and that helps a lot. I've also got the support of a great family, but I do worry about the long term effects on my job. I wonder if it's a retireable ailment, or if I just sort of keep doing what I can for the next year or so while I become a normal person again. Whatever that means. If it just meant I could take a brisk walk, and not worry about my heart, I'd be happy. I've also got severe arthritis and take narcotic medicines, and they don't react well with some of the other stuff. Thanks to everybody here. Finding this forum today was very helpful to me.
Its itsn't called hypo-he// for nothing. Your main focus right now should be on plugging along in a forward fashion. Do what you can with what you have at the moment.
It took me 4 full months post RAI for my levels to fall enough to be put on replacement. By then the anxiety had ramped up to full blow psychosis.
If they have not perscibed you an anti-anxiety get on the phone with them right now.
You: I wonder if it's a retireable ailment
Nope, just feels like it is. Its a (deleted) for sure.
things you can do to help right now:
Eliminate all unessasary stress - stress makes the mental aspect of this 100x's worse.
Eliminate all iodine from your diet. Its processed in the thyroid, your thyroid needs to focus on dying and not other things.
Make list of stuff. The mental fogginess will get worse. Haveing a pad to jot down things on helps.
Dont't push through the fatiuge (unless you have too - ie you are at work) Doing so makes it worse and last longer.
get enough sleep.
Your still on anti-thyroids?
for me I felt 100% better the next day after starting the levoxyl, the difference was amazing. Learning to live post RAI is a lot about discovering who you are and how your body functions on the replacement hormone. I am not the same person I was prior.
Peace be the journey
Graves - RAI 6-2008, levoxyl 88mcg
Help I'm a 32 year old woman who is three weeks post rai my anxity is sky high one then I'm depressed the next i was worried so i had bloods done thru doctors my tsh was 1.7 how come i feel like this please help no ones given me any answers my endos just fobbing me off saying I'm just worrying x