[enough3]

#1018912

Hello Everyone,

I have not posted over the summer…but I having been reading many of the posts.
I tried for remission for the 4th time, and it failed. I’m tired on the fight. My goiter has doubled in size this year:( You can actually see it on the right side of my neck. It is growing up, dowm, and into my throat..which explains my sleep issues at night..and needing a drink to help me get bread down:(
I’m so ready to be done with this thing. Although I know that I will never be "done" with it..I really mean done with the symptoms of the hyperthyroid.

I have many questions that I need so guidance with:
1)My Endo told me to come off my PTU for the next 3 weeks. Then I will get my 2nd thyroid uptake (had one in early 08′) and then proceed to the ablation thing. I’m EXTREMELY worried about not being on PTU for 3 weeks…I usually end up freaking out by day 11-14 w/o meds. I’m talking 0.001 tsh here! How can I go that long and make it??
2)Seriously….please tell me how much weight I could possibly put on. I’m 5’6 and weigh 120 right now and I’m in a normal range (as of tonight…my last dose of PTU) If I eat healthy can I maintain my weight? I have weighed 120lbs since I was in high school 15 years ago. Is it possible??
3)Will my hair fall out before or after the RAI?
4) How soon after RAI can I work out…jog?
5)Last but not least, I’m considering an elective surgery. Once I get through the RAI and get stable, how soon could I have surgery? Is it dangerous to have surgery when you take synthroid?
6)Does RAI increase your changes of having another auto immune disease?

Okay…those are all my questions…lol…I know many of them sound vain, but it has been the longest 3 years of my life with this. It has taken so much out of me. I could truly just cry for hours. I just want to come out of this just feeling like me. Healhty, stable, and somewhat attractive for my dear hubby.

[Nick]

#1067807

Hi,

I am in the same boat with you. Have been in remission 3 times over the last 10 years and I am ready for the RAI.

[Bobbi]

#1067808

Obviously, going off the PTU for three weeks won’t be a picnic, but there are things you can do to make life a bit easier. Your doctor might prescribe a beta blocker during this time and that can alleviate symptoms. Not all of us can take this type of drug, but if you can, it might help. Also, I recommend, strongly, that you listen to your body and treat yourself the way you would want your best friend to be treated if they felt the same way. In other words, if your best friend felt this way, would you urge him/her to run the vacuum, clean the garage, whatever it is that you have decided you absolutely MUST do. If your answer is "no" then you don’t expect if of yourself either. This period of increased frailty is temporary. Pampering yourself through it can help.

Weight issues typically normalize over time. Eating well (i.e. healthy foods in appropriate proportions) will help you to assure that over time your weight balances back to the right spot.

Hair probably will fall out a little more than normal for a while, but not due to the RAI. We do not receive radiation in the percentage that cancer patients do. It is a mild dose localized to the thyroid. But being hypothyroid, and dropping from hyper to hypo, puts the body under enough stress that our hair suffers temporarily. I was shedding as badly as my collies for a while, but I still have a head of thick hair.

As to when you can jog again, ONLY your doctor can tell you. Listen to absolutely no one else. You might, however, be able to do gentler exercise, like walking much sooner. Excessive levels of thyroi dhormone have an adverse effect on muscles, so do listen to them at first. You might need to pull way back to avoid shin splints, etc., even though you will be feeling well. The muscles need to be gently restrengthened typically.

Synthroid, and the other replacement brands, ARE thyroid hormone. They are chemically identical to our own thyroxin, and they are metabolized in the body the way our own thyroxin is metabolized. There is no reason why you should expect to be anything other than normally healthy on the replacement hormone. Eventually (the body needs time to heal). Whether or not you can have future surgeries depends on your overall health, not whether you are taking syntrhoid, etc.

RAI does not increase your chances of developing autoimmune diseases. However, the fact that you already have turned up with one autoimmune, means that you are more likely than a person without autoimmune problems, to develop another autoimmune disease. The increased risk is not huge, but it is statistically significant.

I do wish you good luck with the RAI. Please know that it can make you well, and eliminate the possibility of becoming hyperthyroid again — ever. Long term studies have demonstrated that "being hyperthyroid" carries significant risks for future health. RAI has been shown to be reasonably safe.

[runlacie]

#1067809

Hi, I had rai on 7/20 but never took ATD’s, so I’ll just write about what I know and how it went for me-

1. I was told by my endo that the radiologists tend to want you off of ATD’s for a longer than needed time. I studied a lot on the internet about the different dosage protocols and how long to be off of the ATD’s, but since I was never on them, I can’t really speak from experience. I did find out that sometimes your rai dose would be higher if you had taken ATD’s vs those that hadn’t. I found out I had Graves’ in early June and my tsh was, like yours, undetectable. I went almost 2 months with no meds other than an occassional beta blocker which I took very sparingly only every couple nights when my heart was really pounding and I couldn’t sleep. I even went on vacation out of the country during that time. I’m a runner and couldn’t run due to the high HR, but I did continue walking every day. Have you taken beta blockers? They are fine to take before and after rai and might help you to feel better while you are off of the PTU.

2. Just my experience so far- I’m 5’7 and weighed 134 before Graves’, which is actually pretty gaunt for my body type as I carry a lot of muscle and am large framed. When I got sick, I went down to about 130- lost a bunch of muscle and looked awful. I’m sorry to say this, but in two months after rai I gained 12 pounds, which puts me now at 142- a net gain of 8 pounds from pre-Graves’ weight. I believe part of that to be that I wasn’t able to run, previously had been running 50-70 miles per week, and was still HUNGRY, so I ate more than I should have- though nowhere near as much as I used to eat. The other thing is that I gained a lot of muscle and bulked up fast. I went hypo rather quickly, even with my "small" dose of 7.3 mci, and I think that also had a play in the rapid slowdown of my metabolism. Since I went on Levoxyl at the end of September I have managed to maintain my weight- it has NOT been easy. I eat 1400-1800 calories per day and track every bit and I am back to running 40+ miles per week plus lifting weights and doing core workouts Which brings us to-

4. I was able to jog a slow couple miles within about 2-3 weeks following the rai. I wear a heart rate monitor and was very careful to keep my heart rate under a number agreed upon with the doctor. My T3 and T4 were in the normal range by the time I had my 4 week bloodwork done, and at that point my doctor told me running hard was okay. I think I was one of the lucky ones that responded quickly to rai, everyone seems to have a different experience with how long achieving normal or hypo levels takes.

3. The hair thing- I lost more hair when I was hyper than when/after I had rai. I’m somewhat obsessive compulsive and would only empty my brush on Monday morning so I could see if my hair was falling out. And it hasn’t.

Overall, I’m happy I did this so far. I was a little frustrated at having to wait so long for my rai appointment as I wanted it over with ASAP, but I’m past that. I’m mad about the weight thing, but once they get my Levoxyl dosage correct, I have confidence I can lose what I have gained. It’s just a waiting game since even though I know my dose is still too low and I’m still hypo, they say it takes 6 weeks to give the full effect and won’t do labs and up the dose except for every 6 weeks.

Good Luck, and keep us posted!

[enough3]

#1067810

Thank you for all the responses!! My uptake is scheduled the 4th and 5th of Nov. and the RAI is on the 6th. Quite honestly, I’m sooo ready. Wish it was tomorrow.

One question I’m still unsure of is about future surgeries. I may have some surgery done soon, and I was wondering if you can have surgery soon after RAI? Does anyone know for sure?

My follow up RAI appt. is on Nov.10th and I know that my endo will give me a answer,..but in the meantime, does anyone have any knowledge about this? Thanks!!

[Ski]

#1067811

If your thyroid levels are high, you’re a high-risk surgical patient, so likely the doctor will ask to wait until your thyroid hormone levels are managed and stable. It may not be as long as you fear for that to happen. Connect your surgeon and your endocrinologist, have them talk with each other about your particular issues and come up with a plan.

[Author]

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