[PAT1953]

#1018786

I’M SCARED BUT I WANT SO MUCH TO FEEL NORMAL AGAIN. THE METHAMIZOLE WAS MESSING WITH MY LIVER ENZYMES AND MY WBC & RBC WERE LOW AND I’VE ONLY BEEN ON THEM 14 DAYS. SO THE ENDO TODAY SAYS SINCE IT LOOKS LIKE METHAMIZOLE IS DOING THIS, HE WANTS ME TO BE OFF 5 DAYS AND ON DEC 16 I WILL HAVE RAI. (20 DOSE HE WILL ADMINISTER?). I REALLY WANT IT AND THEN AGAIN THE DUMPING STORIES SCARE ME. HE GAVE ME 100 PILLS OF 50MG METATROPOL(sp) TO TAKE AS MUCH AS I NEED TO ALLEVIATE THE HEART SYMPTOMS AFTER RAI. I’M ALREADY TAKING 37ml OF THE METATROPOL XL NOW AND I STILL HAVE 85 PULSE RESTING. OF COURSE I WILL STOP THE XL AFTER RAI AND TAKE THE OTHER AS NEEDED. I JUST NEED TO BE BOLSTERED UP FOR THIS. I’M NOT A SPRING CHICKEN ANYMORE AND I WORRY ABOUT MY TICKER. THANKS GUYS.

[Hopeful23]

#1067115

I had RAI done May 22 09. It was thee best decision I could have made. I am now back to work and nursing school. It was very quick for me and I had awful heart palpitations and tachycardia pre RAI and It didn’t get any worse when I had the RAI, it only got better. Everyone is different and responds differently but I to am a chicken and if I can do it ANYONE can. LOL. I want to wish you thee best of luck in your recovery and I promise things do get better. Im not going to say it was a stroll in the park. It took a lot of support from friends and family and a lot of fighting everyday but the end result is so worth it. I had 15milicuries and wasnt even put in isolation my uptake was 98%. My thyroid WANTED that RAI as my endo said. LOL. Graves disease is a struggle but hypo is too. However, compairing the two is so hard b/c they are their own diseases. If i had to go back and do it all over again RAI would still be my treatment of choice. It is nice to be able to wake up and enjoy my day instead of wake up and want to go right back to bed. I still struggle w/ anxiety and fatigue but the difference between then and now is i can PUSH through my day as before I couldnt. I gave up the whole day to my symptoms. It’s hard and I was exactly in your spot. Im 24 and have been dealing with all this sinc ei have been 21. Its to the point where I just said you know what, it is what it is and the only thing you can do is get better. Ya know? My best advice to you is take your beta blocker every 8hrs or how ever you are prescribed it so that it never has time to leave your system. If you feel better and your heart rate isnt in the 60’s still take it. I made the mistake of thinking i dont need it and boy was I wrong. lol. Just do exactly what your endo/PCP says to do and it should be tolerable. Again, good luck and try not to think to much about it and work up your anxiety. Take it for what it is and get through it so you can start your life again. Best regards.

Krystal

[PAT1953]

#1067116

Thank you so much hopeful23 for your kind and encouraging words. I really needed to hear that. I cry everyday worrying about this awful stuff and then all I can think about is the awful things that I have in the future with being hypo. Which way do ya go? But I know hyper is playing havoc on my body and my emotions. I can’t wait until I get pass this and life will look good again. It doesn’t look so good right now just as you said, getting up in the morning takes such effort, but it’s true, what can you do? It is what it is, how true. Can I ask you if you gained weight after going hypo or had any eye problems? My Doctors have never tested me for the antigen I hear about from people and that you produce more when stressed? Well, I appreciate your reply. It gives me hope.
Patti

[Bobbi]

#1067117

I’m going to be out-of-town on the 16th, PAT1953, so I will wish you good luck this morning. I don’t know if I mentioned it directly to you, but my mother had Graves, and had RAI in the 1970’s. She lived another 30 years without thyroid disease issues (other than taking one replacement hormone a day). I had my RAI in 1996, and it helped to make me well again, too. I do wish you the same good luck,

[ewmb]

#1067118

Patti,
I had my RAI on May 8th and I am, like Hopeful, now able to do things in my day instead of dreading each symptom etc.. I am still not settled on my replacement dose but am getting so much closer. I am not young as you are, I’m middle aged so I am dealing with other issues related to my age. RAI was my choice from the beginning of my Graves disease diagnosis in 2007. I tried the drug route and it didn’t really work for me. RAI itself was easy. The recovery is a struggle but you can mentally shift from I’m sick to I’m healing in your mind. I hope that things go well for you and that you can lean on this bulletin board for support. They are a great bunch. Ask any question and somebody will have thought the same thing at some point in their illness too.

I did gain a lot of weight when I went hypo on the drugs. As I am getting back to my normal levels I have lost almost 10 pounds so far and I really haven’t been able to get back to my regular exercise quite yet. Just worry about being healthy and not weight gain. I never tested positive for the antibodies either. My endo says that the test for Graves antibodies isn’t sensitive enough yet.

Keep crying and asking questions…….. It’ll get better one day soon.

ewmb

[PAT1953]

#1067119

Hey ewmb I’m going to be 57 in a few weeks. Now that’s over middle age. ha. Thanks so much for all the words of advice. All my close relatives are gone and I have 3 sons and they quite don’t understand how it is with me. So having your guys by my side really helps give me courage. I really get concerned about the weight and the eyes. I’m already about 25 lbs overweight so I just can’t afford no more. I’ve been at the same weight for years, since menopause and have come to grips with it because I used to be so thin. Now the threat of fighting more weight just has me in a fit. But I have to do as you say and try to get healthy and just try to keep food away from my face. Maybe when I feel better I can get back to walking again. I appreaciate everyone. Thanks Patti

[enough3]

#1067120

No worries, Pat. You will be fine. I had it on Nov.6th..and I’m sooooo glad! I’m still a little hyper…but nothing like before. I regret not doing it sooner!!
Hope this helps!

[hyperteacher27]

#1067121

Good luck on Wednesday, Pat! I had mine done Nov 30th, so just two weeks ago today and I am already feeling a little bit better. I had labs done today and plan on calling my doctor tomorrow for the results, so we shall see!

Only one person responded to my previous post about getting a yeast infection OUT OF NOWHERE a week post RAI. Any more thoughts?

Thanks guys and be well!

[Hopeful23]

#1067122

So far no eye problems. I did gain weight but as soon as my thyroid levels went into normal range I lost the weight immediately. It was more swelling and water retention than anything. You just look puffy. lol. It’s hard to explain. One of the harder symptoms is the "wall hugging" you literally feel as if you have to use the wall to walk. Its awful, thats a huge symptom of hypo as a lot of people on here went through that. It’s still better than hyper. lol. I wish you the best.

[PAT1953]

#1067123

Thanks Hopeful, Enough, and hyperteacher. 2 more days, I’m so nervous. I read things about people ending up in the hospital with heart racing to 160 and with my heart not liking this now, I can only imagine it when the dump starts. My endo says in 6 weeks he’ll see me back. Wow that seems like a long time after RAI? What do you guys think? Also Hopeful23 you said you had a 98% uptake of the RAI. How did you know that? Did they check you a few days later? I have a lot of questions, I know, but this is a life altering event and I just can’t shake the thought of me fatter, slower, and all the other things with hypo. Oh well, it is what it is. Thanks guys for listening. I’m glad your feeling better Hopeful and Enough 3 I heard you were feeling pretty rotten. Keep me posted.

Patti

[Ski]

#1067124

The first six weeks are usually what it takes just to get all the excess thyroid hormone you have NOW out of your system, so it’s not that unusual to wait six weeks before seeing the doctor ~ that way you can have labs done and they have more likelihood of being helpful.

The uptake percentage is determined during the uptake/scan that most doctors use in order to help determine the dose of RAI. Did you have that done? They give you a tiny dose of a non-destructive isotope of RAI (not the kind they use for treatment), then they have you come back in 24 hours to get the readings done. It shows the pattern of thyroid hormone uptake within your thyroid (which helps to be more certain of the diagnosis of Graves’), and they find out what percentage of the dose remains in your thyroid. Some doctors just pick one dose of RAI and give it to everyone (just heard about that at this year’s conference), so if your doctor is one of those, the uptake/scan may not be necessary ahead of time, in their opinion. From the patient’s perspective, the uptake percentage can help you figure out how much of the RAI stays in your thyroid and how much is flushed out of your body in the first 48 hours.

[PAT1953]

#1067125

Hi Ski,

Thanks for the reply. Yes I had a nuclear scan just as you described and my uptake was 37% after 24 hours. The endo says my goiter isn’t real large and with the uptake of 37% he came up with 20. I also had an ultrasound that my MD ordered and it said larger than normal and heterogeneous texture(??).
I have no idea how he arrives at that figure?

[Ski]

#1067126

The percentage is pretty simple ~ they know how much they gave you, and they calculate how much is inside your thyroid, and they see what percentage that was of the original dose. Then they decide how much needs to BE in your thyroid in order to make the actual RAI work, and they figure out what total dose will leave enough in your thyroid, based on your uptake percentage. So if they give you 20, and your uptake was 37%, then 7.4 will remain in your thyroid after the first couple of days, and that must be what they’ve calculated you need to do the job. You can follow up with the doctor to make sure you "like" their logic ~ I had RAI, with the full intention of knocking the sucker out completely, gone gone gone, and the doctor thought he could bring me down "just enough," (theoretically, could work, in practice, doesn’t, and bottom line, it’s NOT what I wanted) so if I had followed through and asked some questions, I could’ve done it my way the first time. Never a bad thing to ask questions and check beforehand.

[PAT1953]

#1067127

Ski:
Wow 7.4 doesn’t seem like much to knock my thyroid out. I sure don’t want to do this thing again. Should I question the Dr about his calculation?

[Ski]

#1067128

No harm in asking ~ I don’t know anything at all about the destructive properties of one millicurie, or what your particular disease situation is, so I can’t speak to whether it’s enough. The rationale can be different, doctor to doctor, according to their particular philosophy and experience. If you’re concerned, definitely speak up!

[Author]

Posts