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in reply to: how do you get over the anger? #1068097
I probably agonized, too, about leaving 2 kids (one still needing formula) for 2 days. In fact I remember typing a schedule for him, of our normal day (different nap times, feedings, playtime, bath time…). It came out as 2 pages! I taped it on the wall but when I came home I knew the schedule wasn’t looked at, and my guidelines were not followed.
Since then, I realized I have to let go at times. Our husbands are not complete morons… They may feed the kids bologna and ramen noodles for a couple of days, — but this is not the end of the world. I think I am getting a glimpse of myself 4 years ago…. How particularly uptight I felt about healthy food and schedule…. I think a lot of it was not so much about the food, but about control…. As usually, type-As get Graves… Everything should be under control, and multi-tasking. I spent years un-winding from that. Learning to let go, and being surprised that the world didn’t fall apart in the absence of my control… And you know what, my son now eats only hot dogs, bologna, and ramen noodles, and refuses anything else. And I am letting him. Being a normal boy, I guess. On one hand, I am grateful that there is no headache with him about fancy meals. On the other hand, I think it’s temporary and he will acquire taste for better food.
Oh yes, when I came back after 2 days after RAI, my kids were covered with oil (greasy hair) – children bath oil, that is, my hubby washed them with it instead of soap. The bathtub was oily. The place was a mess. My hubby was beaming from ear to ear, expecting praises from me about how brave and reliable he was minding the kids by himself, for 2 days. I had mixed feelings.
But we, the Graves people, need to let go, that is the most important. That’s what contributed to our Graves to start with. Taking too much upon ourselves, thinking that we are the rock the earth is standing on (thinking of everybody before ourselves), and not handling stress easier than others.
Actually, when I was in the middle of my Graves rages, I also felt, concurrently, that I needed to have a place away from everybody. I sensed that it could have helped me. I imagined a clean airy room, the meditation kind of place, where I could be all by myself, meditating or not, but I felt it would help me to calm down. I was grateful for the 2 days away just for that reason alone.
in reply to: how do you get over the anger? #1068087Hockey, hi from a fellow Canadian.
First, I am confused about "the guilt of being away" after RAI. For how long are you planning to stay away? I was away for 2 days from my very small kids (had 10mci). On return, just tried not to hug them too much for a couple more days, and then everything returned to normal. If anything, those 2 days away felt like a vacation. With a baby and a toddler, I hadn’t gotten a break for 3 years prior.
It was a break from my husband, too, when I could reflect on why I had so much anger at him. If I started writing down the manifestations of my anger, it would come out a mental case. That was going on for 2 years prior to my diagnosis. Throwing things, breaking things… It was unreal, a shameful black hole of my life. Some people get Graves rages more than anxiety.
… And in that case, RAI helps. With my thyroid gone (like a mean monster alien sitting inside of me), my capacity for anger fizzled.
In the meantime, (if only I knew this simple trick before), when you are angry and screaming at your loved ones, scream something along the lines of: "I DON’T KNOW WHY I AM DOING THIS! I STILL LOVE YOU! I THINK I NEED SOME TIME BY MYSELF!"
in reply to: Re: A Question and a comment #1068194Found a nice quote: 80% of I131 is eliminated in the first 48 hours:
in reply to: Levoxyl, synthroid, generic, what do I do??? #1068183I agree that the generic content may vary slightly and therefore the 100mcg of brand name would not be equal 100mcg of a generic, so some playing with the dosage would be needed, (with switching, too) – not that it’s impossible.
Myself, used Synthroid only (at various times, my dh and I have used light yellow -100 mcg, light green -88mcg, light pirple -175mcg and light blue-150mcg).
in reply to: Re: A Question and a comment #1068189I came back home on the 3rd day…. My kids were 11 months old and 2.5 years old…. Didn’t feel really right to be around them that soon, but what could you do. The worst are the 1st and the 2nd day, and then the danger decreases exponentially. 4 days are plenty good, just keep your cutlery separate, and flush twice…
This question usually causes conflicting responses, – because there are people who can swear by any of the treatment.
If a cancer patient was asking, what he/she should do, a surgery, radiation, or medications. The answer is – it’s what the patient thinks would be the best for him/her, after doing research. So research, research, research.
(I did RAI, and I like it made me feel healthy, but there are people who like the med route, and people who had surgery). Go with what feels right to you, – something that would be the least likely cause of the "I wish I didn’t do it" feeling.
in reply to: life insurance refusal #1069198No, my life insurance was not declined with RBC Insurance in Canada. I said I had Graves, had RAI, no thyroid, and taking Synthroid. More than that, said that I was going to undergo orbital decompression, where they break your skull and set your eyes back.
Got an approval even with a preferred rate. Graves does not cause death, when it is under control, does it?
I didn’t go through in the end for other reasons, but they definitely wanted me. I refuse to believe that in USA they consider Graves a deal-breaker. Maybe call more insurance companies around?
in reply to: Newbie with a couple of questions #1068266Hi, Nova Scotia here. I was diagnosed at 41, 4 years ago. Had RAI 3 months after the diagnosis, too. Had one eye puffy before RAI, too. RAI helped me to feel better starting at about 5 months after RAI, after I went hypo. Your muscle weakness is def. Graves, and will be helped when your levels normalize. I started taking 100 mg Synthroid 5 months after RAI, and never stopped or changed the dose for 3+ years. Feeling healthy all this time.
However, my eyes were acting up for a year after RAI. Just watch them. I got all the wonderful feelings – grittiness, teariness, but didn’t have the double vision. After some time, the hot stage of TED does stop. With me, it stopped miraculously after 12 months, but it could be anything up to a few years.. . One never knows how much development one’s eyes will get. I did get a moderate proptosis at the end. Am now going through eye surgeries, to put my eyes back a bit. Sounds scary, but it is not. If you ever need an eye surgery, you will most likely have it here in Halifax since the only orbital surgeon east of Quebec is here, – and she’s wonderful.
But that’s too early to say, maybe your puffiness will improve with the improved thyroid hormone levels. In the end, I feel it’s treatable, – people can feel better with thyroid replacement, and your eyes, if needed, can be fixed. Good luck.
in reply to: So, why can’t I start replacement thyroid? #1068250TSH lags behind by 4-6 weeks or so (right now it shows your state 4-6 weeks ago. Your today’s TSH state will show up in 4-6 weeks). Since your free Ts are heading into the hypo territory (congrats, RAI worked), and subjectively you are starting to feel hypo-ish, yes, I’d think they’d start you on Synthroid – using a gentler approach. Do whatever you can to squeeze Synthroid out of them.
Well, nobody knows the answer, that’s the most terrible feeling… When something is happening with your eyes, and nobody can tell you when it’s going to stop, and if you will need any eye surgeries. I would say there is a very small percentage of people who really need eye surgery, clinically… The others don’t have their vision compromised. If you don’t want an eye surgery, you don’t have to have one! I certainly don’t have clinical indication for any eye surgeries…. I am doing them to look better…
But that’s waaay out there, first of all, maybe your eyes won’t progress at all. You just have to wait and see…. hard, I know.
elf
in reply to: Weigh-in (just for fun) #1068739Susan,
I had a very beginning of TED (puffy lid on one eye) 2 months after my Graves diagnosis, and had RAI the month after. So I would say there was a slight sign of TED. You not having TED for 20 years, is quite an achievement. I met people whose RAI didn’t result in TED, or TED appeared 8-10 years after RAI. But I also met people who didn’t have RAI and still had TED. This is one big consideration to think about.
Personally, though, I know that TED is not the end of the world, – but I know it’s easier to say now, past the hot stage. The surgery I used to be so scary of, is not a big deal in the hands of a good surgeon.
Take care,
elfin reply to: Weigh-in (just for fun) #1068737Hi Susan,
I was one of those who had no problems with RAI and after it. Had RAI, felt a bit hyper 3 months after it (the last dump), went hypo 5 months after. No hypo crash, felt nothing, started Synthroid based on labs. No dosage adjustments, still use the same dose, 100mcg. Started feeling healthy about a year after RAI, so it’s been 3 years of feeling healthy. When I say "I have Graves", I don’t know what I really have. I feel just a healthy person, with my thyroid supplement provided.
I did have eye troubles for a year after RAI, that is, the hot stage of TED. Then it was over, and my eyes have been cold for 3 years. I got proptosis and am going through OD surgeries right now.
But, I was fearing the eye problems much less than living in fear of becoming hyper or hypo for many years…. I guess people put different weight on their fears.
Hope you will find your answer soon,
elfin reply to: Weigh-in (just for fun) #1068735"susandemarco":35wruzm5 wrote:I would appreciate hearing from someone who had the RAI a few years ago and how they are doing with their weight now.Thank you,
Susan[/quote:35wruzm5]Susan, the short answer is – yes, I did gain a few pounds after RAI 4 years ago.
The long answer is – I had RAI after having 2 babies in a row. Without Graves, that could be my normal weight after having 2 children (from 130 to 150). I don’t know really if the 20 lbs are the maternity or post-RAI weight. In any case, I have been sedentary for all these 4 years, hence can’t say if the 20 lbs are looseable. I think whether it’s the maternity or RAI weight, it can be lost. There are a couple of mile-long beaches here perfect for walking/running…
take care,
elfin reply to: TED – will I have my sight again? #1068330Yes you will! Modern eye surgeons do wonders. It’s just a drawn out process, mostly of waiting, and yes it seems as if your life is on hold. It shouldn’t be, really. First, waiting for TED remission. Then, waiting for each surgery to heal, and in the process seeing if any other surgery is needed.
I just did one OD on one eye and it seems to me that the wait is taking forever. But it’s been 2 months only. Then OD on the other eye, then wait, then the lid surgery. Not only they will make you see well, but look well, too.
in reply to: 6 weeks post RAI and all better?!? #1068388I never had any problems with a dosage and never had any adjustments. Started on 100mcg of Synthroid and still plugging at it. I feel guilty reading sometimes how people struggle with finding proper replacements and proper dosage. I have felt healthy, my old self, ever since, for 3.5 years. They said something that they determined 100mcg by my weight (?) I was 130lbs then. Now am 150lbs, but still the same dosage.
I’ve had troubles with my eyes though, so can’t really say I’ve been totally my old self. But in terms of exercising, yes, I could do anything – and should have done already!
take care,
elf -
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