[enough3]

#1067038

Hey Everyone,

I talked with my Endo today and she told me not to stress over the 0.012TSH and high t4. She said that since I’m 6 weeks post RAI that she doesn’t want to give me any medications. I just need to ride this out till I go hypo-which she said would be any day. So, I feel a little better knowing that I don’t need to be on meds.

Although I feel sooooo hyper right now. My heart is just beating away like crazy and I feel the palpations every few minutes (like a quick jump or something). Last time I remember feeling this bad was before and after my thyroid storm. The weird thing is that my heart rate is not that high..just a little over average. It ‘feels" like it’s going crazy. I can’t wait till I reach regular levels……I miss it!!

[PAT1953]

#1067039

Wow, Enough3, I didn’t realize that you had a thyroid storm. How awful. Can you take beta blocker for the bothersome heart? I do and it really helps. I forgot to take my dose yesterday until 12 hours later and oh my, I waited to long and it was awful the old hyper symptoms just came rushing in! I’m post 5 days RAI and now I wait. I did go to the Eye Doc today. He measured my eyes and they were 18 each side. Does that mean anything to anybody? What is normal? He didn’t say much other than I could get the eye involvement at any stage of the disease. Crap, something to worry about forever more. All of you take care.
Patti

[Nick]

#1067040

Pat1953,

I would think this was a tonometry test for glaucoma. Did you feel pressure in your eye during the test? A normal result means your eye pressure is within 10 – 21.

[PAT1953]

#1067041

Actually, Nick it was a tool that he put up to my eyes and measured where the bones from the eye socket are and measures out to the tip of the eyeball. Mine was 16 and 17 at the endo’s and at the eye doc it was 18. He said it just could be a slight variation on the tool from each doctors. I hope so. That would mean my eyes mover 2 and 1 millimeters since my RAI.

[elf]

#1067042

PAT – the eye measurements have different normals for different people. For some people normal is 20 or 22 (some people have naturally larger eyes). It depends on the race, too. It’s great that you have the baseline now. That instrument is not the most exact tool in the world, neither, – and I feel that different doctors will come up with different numbers. Maybe your eyes haven’t moved, it’s just people. I remember students trying to measure my eyes, with the Endo helping. The numbers were flying around the room, – "19… 18?… 20?"

After OD on one eye, my measurements are 17 and 20.

[Ski]

#1067043

They would have been measuring the proptosis (how much the eyes come forward) ~ "normal" is different for most people, so it’s best to know where you started and then you can see what’s changing. RAI does have the potential to stimulate the antibodies that affect the tissues behind the eyes, so it’s a good thing they’re watching carefully. Personally, I had a little "flare" of TED symptoms for a few months after RAI, but they subsided.

[runlacie]

#1067044

enough3 wrote:runlacie- do you think that if you had your labs done sooner that you could have started replacement? I really hope that I don’t get to that place of a RHR of 30’s & low 40’s..that would certainly freak me out. My Endo said I can have my labs done anytime I want. I have been at 4 weeks..then 6 weeks. I’m planning on going at 8 weeks….looking back, would you go 2 weeks in between labs…more or less? Just wanting some thoughts. I just want to catch the hypo thing before it catches me.

enough3- yes, I think I would have been able to start replacement sooner. My tsh was 29.something by the time I had my second labs. and then even after beginning 50mcg, my tsh was even higher (I forget what) at the next 4 week lab. I guess I just went hypo pretty quickly. I wouldn’t get too worried about RHR’s getting to the 30’s, my normal is very low. When I was full blast hyper and tsh was undetectable, my RHR was still falling into the 50’s at night (they had me wear a 24 hour monitor while looking for a diagnosis for me), when I first went to the doctor and told them my HR was too fast they thought I was crazy. You are lucky if your doc will let you get labs every 2 weeks, I think that is great. I was very upset over having to wait for mine when I knew I was clearly hypo. And I have also experienced the palpatations you have, they are no fun. But you’ll get through this and be normal again. You really will.

[enough3]

#1067045

Pat, I do not have the eye portion of Graves. I do get grity & dry eyes, but thats it. I did have a thryoid storm in August of 2007. It was very scary. I thought that I had another on in early o9′, but my Endo said that it was not classified as a thyroid storm. My Tsh was 0.001 and my t4 was in the 50’s when I had my real thyroid storm in 07’….horrible. But, I don’t feel anywhere near that today…just annoyingly hyper.

Runlacie, My Endo is the coolest Dr. in the world…except for my hubby:) I’m fortuate b/c my hubby can do my blood work for me when I don’t feel well. I plan on getting it done next Mon (8 weeks post). Hopefully I will start to shift to hypo soon… ” title=”Neutral” />

[susandemarco]

#1067046

Hi enough 3,
I will be going for RAI on Jan. 8th and am a little nervous. I was wondering what precautions you took right after you took it, as far as
your family. My endo said that the only real precaution I have to worry about is being around small children and pregnant women for about
one week. She said that I could sleep in the same bed with my husband. I really do not know about this, because a lot of the things
I read on this site stated that they stayed in different rooms or went out of the house altogether.

I have and elderly mother-in-law and her caregiver that are here at all times. I do have eight grandchildren, and I have decided to stay
away from for about ten days, just for precaution.

Any information you could give me, since you just went through it yourself, will be greatly appreciated.

Thank you very much,
Susan

[enough3]

#1067047

Susan,
I have a very laid back Endo. She said that I could stay home, just not to hug, kiss, or cuddle anyone for the first 72 hours. Also, encouraged plastic eating utensils and flushing twice each time. And that if I started to sweat, to put my clothes and towels in the wash seperate. I have 3 young children (8,7,2), so I decided to go out of town for 2 1/2 days. I just wanted to be safe. I slept in the bed with my hubby on day 4 (we have a king size..and I stayed way on my end:)
Also, I would encourage you to use speaker phone on your cell phone the first 2 days. I used my cell phone a couple hours after RAI, and it messed up my phone so bad that I had to replace it. Speaker phone works fine because it’s away from your neck.
I enjoyed my quiet 2 1/2 days…in fact..I was a little bored. I did play golf (by myself:() I got a massaive headache the first evening…but that was it. The 2-4 weeks after my goiter got really huge and my throat felt sore. Now, I’m just dealing with insomnia from my still hyper thyroid.
I’m looking forward to being on replacement:) I wonder what it will fell like being "normal" again? I wonder if I have every been "normal"…LOLOLOL

P.S-For encourgement, I felt wonderful the first 5 weeks!! I was falling asleep early, relaxed, and even had a glass of wine (which I have not drank in 2 1/2 due to my heart beating too fast from alcohol with the hyperthyroid)

[susandemarco]

#1067048

enough3,
Thank for all the information. It seems that my doctor has the same attitude as yours. I was thinking about staying in a hotel for the weekend of
my RAI.
I am a lot older than you are , I am 63, but I am very nervous about this whole thing. I have had Graves for about 21 years and have been on and off
PTU during that time, with remission for about eight years the first time taking PTU for about 22 months. Each time after that it was shorter and
shorter and as far as now as soon as I go off the Graves returns within months. That is why I have finally decided to do the RAI route.

I am so afraid of gaining weight, although everyone,including every doctor I ever spoke with, that once your levels are stable and you do not eat
as though you were hyper you will be fine. We will see.

This is a very complex disease. I guess we should be thankful it is not something worse. Please let me know how your weight has been going so far.

Thank you,
Susan

[enough3]

#1067049

You will be fine. I was so tired of the ups and downs of graves..that I choose RAI with peace and confidence. Although I’m still dealing with a hyper thyroid, I know that long term I made the right choice.
Your the same age as my mother. If she had this, I would totally encourage her to have RAI. I would rather her take a tiny little pill and not have to fight the mountain of side effects with Graves. It is just a terrible thing for anyone to go through. You have some of the greastest years of your life ahead of you..enjoy them without having to worrying about the thyroid:)

As for weight gain, I have not gained a pound:) I’m eating like a horse, too! LOLOL But, I know that my labs will soon change…so, I will start to take it easy on the eating. Weight gain was my biggest concern with RAI. Now..after all the feedback I have heard from my doctors, friends, and this wonderful site I’m realizing that I will probably not gain weight as long as I take care of myself and not eating like a starving person..hahahahahaha

I work with my husband part-time who has his own practice, and I see tons of women who are on synthryoid and some are very skinny…so that is some hope for us all:)

[susandemarco]

#1067050

enough 3,
Thanks again. You certainly made me feel a lot better. I appreciate all the personal information you gave me.

I will keep you and this site posted after I have RAI.

Thanks Again and have a great holiday,
Susan

[mama_44]

#1067051

I HAD MY RAI DONE SEPT.15. I AM STILL HYPER. WENT TO MY DOC APPT. YESTERDAY. WAITING ON MY LAB RESULTS NOW. MY DOSAGE OF RAI 29.7. MY DOC SAID IT WOULD TAKE AWHILE, BUT MY LAST LEVELS HE SAID THEY WERE GOING DOWN SOME AND I WAS GETTING THERE. I ‘M STILL HAVING HYPER SYMPTONS BUT NOT AS BAD. I’M STILL TAKING MY BB. I WISH THIS COULD BE OVER WITH. I AM SO TIRED OF FEELING LIKE THIS. BUT IT’S A LONG ROAD MY DOC SAID, SOME LONGER THAN OTHERS.

[enough3]

#1067052

mama-I totally know how you feel. We will get there! I had a dose of 15 for my RAI and I’m still hyper. I’m having my 8 week labs done tomorrow morning. Looking forward to seeing what the results will be.

As a lot of people say on this site, this WILL pass..we will get better over time:)

I hate the waiting..but I’m sooooo glad I’m not on ADT’s anymore.

[Author]

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