[cyndiec]

#1073100

I am new to the site as well, I know what you are going through. I posted asking about the pills forever and weight gain. This morning my endo told me stop the thyroid pills for a week, get more blood work then start radioiodine. I was told it was menopause for about a year until I was on the verge of insanity then was told it was graves, I have been on the thyroid pills and heart pills since October. I was hoping to go into remission, didn’t happen. The doctor said the pills are making hypo now instead of hyper. I hate the thought of pills foever, one of the people on the site posted to me that they had the treatment and didn’t gain weight. They said you just have to get the numbers right. I researched all kinds of natural remedies and websites where people claimed to have healed themselves and nothing worked. According to my doctor these people who healed themselves probably never really had Graves. It is scary. I am like you and still have a lot of questions. You are not alone.

[enough3]

#1019650

Hello Everyone,

I’m a newbie to this site. I discovered it yesterday searching the web for help with my Graves Disease. Wish I found it 18-months ago when I was first DX. Here is a short stroy of my situation. August of 2007 I had a thyroid storm…3 months after having my 3rd baby. I was out on PTU @ 450mg. It slowly got reduced. My Endo wanted to take me off to see if I could go into remission..well 3 weeks later my hair was falling out in chunks! I did the iodine thyroid uptake and it was really positive for graves..along with 0.000 TSH and high T4. Well, I did not want RAI..I wanted to try for a remission. So, from Feb.2008-Dec.2008 I got down to 50mg of PTU daily and all my levels were perfect! Since I was on 50mg of PTU for 5 months, I wanted to try 25mg daily to see if remission was on the horizon. Well, 4 weeks later my TSH dropped to o.o2. I was getting all the symptoms again. I raised my dose to 100mg for 10 days, then back to 50mg. Well, 3 weeks later…my tsh is lower..almost undectable, BUT my T4 was perfect. My endo really wants me to get RAI. I don’t know what to do. I want to try remisson. As of yesterday I’m on 200mg of PTU to help raise my TSH some.
Here are my fears:
1)I’m 30-years-old and I scared that having RAI will cause cancer later in life.
2)I enjoy being thin…and do not want to fight keeping a low weight
3)don’t want to be away from my children for 5 days.

What shoudl I do? DO I have a chance at remisson or it it wishful thinking?

[Ski]

#1073101

Your treatment is YOUR choice.

I can tell you that you have no extra risk of developing cancer from taking RAI. There’s also no guarantee that you’ll gain weight. You may bring back some of the weight that was lost through hyperthyroidism, but that’s returning your muscle mass, which is weight you WANT. When we lose muscle mass due to hyperthyroidism, we are at risk because muscle mass eats calories even at rest, and when you lose that muscle, you can’t eat as many calories without gaining. When the muscle mass returns, it is "baby flabby" muscle mass, so it takes careful conditioning to build it up without hurting yourself. Everything in moderation, and you’ll be fine.

The percentage of patients who achieve remission after their first course of ATDs is around 40%. If you’re in that 40%, great. Traditional wisdom says you must be on the ATDs for up to two years before attempting remission. If you have found a dose that keeps your levels normal and you feel well, no harm in continuing to take it for now, and even if remission is not achieved eventually, long term ATDs ARE an option. Typically a maintenance dose is extremely small. Many doctors will advise against it, for various reasons. Their opinions can be valuable, but they are something for you to consider. They are not the "boss of us."

If you end up needing RAI, it may be far enough in the future that your kids will be older and you can use the "six foot rule" we use with adults for the first two days, and that would be all you’d need to do. The issue is that small children don’t understand why they’d have to stay a distance away from you, so it’s better for them emotionally just not to have you in the vicinity, rather than "pushing them away" for their own good. Still, if you need it, having a Mom who is healthy is WAY worth the five days, and there are things you can do to remain in touch. You can still call them multiple times in a day, you can write them notes and send fun activities to their caregivers, so they know you’re thinking of them, you’re near, and you’re okay. In the alternative, you could have surgery to remove your thyroid. You’d still have to be away from home at least for one overnight in the hospital, and you’d be restricted as to lifting anything for a while, so restrictions exist for either solution.

I hope that helps!

[enough3]

#1073102

Thanks for the replys. Very helpful. I think I will really consider trying the remission and giving it one more year before considering RAI. I did great on 50 mg..now just have to get back to that point. ALso, encouraged to know that RAI will not cause cancer (down the road). I just assumed that taking it orally that it would "deposit" into other cells for future use. Thanks for responding.

[npatterson]

#1073103

Really talk to your doctor. You are NOT actually coming down. Even when you lower the dose, your hyperthyroid levels come right back. You are NOT doomed to struggling with your weight. Have you even looked into surgery? I guess the thing to remember is that as a general rule, your thyroid is no longer your friend.

[grekson]

#1073104

Maybe Methimazole might help you.

[Kimberly]

#1073105

Nancy Patterson wrote:Really talk to your doctor. You are NOT actually coming down. Even when you lower the dose, your hyperthyroid levels come right back. You are NOT doomed to struggling with your weight. Have you even looked into surgery? I guess the thing to remember is that as a general rule, your thyroid is no longer your friend.

I agree with Nancy that a chat with your doctor is definitely in order…especially if you have been adjusting the doses on your own. It appears from your post that you’ve had some pretty severe dosing swings in dosing in a short period of time. (Although maybe I didn’t understand correctly).

Keep in mind that once you go hyper, it can take a few weeks for the excess stores of thyroid hormone to be used up. So it’s better to wait a few weeks after a dosing change and then follow up with labs to make *sure* you know where you stand.

I wouldn’t agree, though, with the idea that the thyroid is "not your friend" — since some patients do manage to achieve remission and maintain their thyroid function. It’s really those pesky autoantibodies that are not your friend. ” title=”Wink” />

I’m curious if your doctor checked your TSI before you quit taking PTU the first time. If your autoantibodies were still raging, that might be why the first attempt to get off the drugs was not successful.

Good luck!
Kimberly

[enough3]

#1073106

Kimberly,
The first time he took me off, my Tsh was 6.8 something-I was very hypo, so he just gave it a shot I guess. The crazy thing about all of this for me was that I felt me best on 50mg of PTU-REGRET…coming down!!! That bottomed me out ” title=”Sad” />
I’m waiting to hear back from my endo about all of this. Currently, I taking the 200mg of PTU.

[Kimberly]

#1073107

enough3 wrote:Kimberly,
The first time he took me off, my Tsh was 6.8 something-I was very hypo, so he just gave it a shot I guess. The crazy thing about all of this for me was that I felt me best on 50mg of PTU-REGRET…coming down!!! That bottomed me out ” title=”Sad” />
I’m waiting to hear back from my endo about all of this. Currently, I taking the 200mg of PTU.

Oh, that makes sense…I didn’t pick up that you were headed hypo from your original post.

I am on Methimazole, but I started creeping hyper again after my Endo and I agreed to cut my dose in half, because my levels had been steady for 6 months. So I understand your frustration!

Hopefully, you can get a new set of labs soon and start to get things back on an even keel.

[scoutgirl78]

#1073108

My dr suggested RAI when he saw me the first time. He doesn’t like continued use of methimazole because it can cause side effects at any time, even though I haven’t had any yet. I am scheduled for RAI this Thursday. Let me tell you Hypo is way easier to treat than Hyper, I have now had both. The synthroid for hypo works much faster than RAI or methimazole for hyper/Graves. I don’t want to keep having scans and extensive problems for the rest of my life. I just want to feel normal again. My resting heartrate was 100, my blood pressure was 133/82, tremors, confusion, easily irritated, hot all the time, I can’t deal with these things anymore, I have a family and a farm full of critters to take care of. JMO, get rid of the thyroid and take the synthroid, it’s way easier. Take care!

[enough3]

#1073109

Thanks for all your advice. This site is wonderful!

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