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in reply to: The rollercoaster- am I hyper again? #1067626
That’s what I felt 3 months after RAI. Give it a week and it may go away. I call it "my thyroid dump" now, but back then it WAS scary, as I didn’t know what was going on. It lasted about a week.
(Whoa, 3 months already).
in reply to: Having surgery 3 weeks after RAI??? #1067736I don’t remember exactly, but it was 1 or 2 weeks of PTU. Then I had nothing for 4.5 months at all because all my tests were within limits. Went hypo 5 months after RAI. I am sure you really want the surgery. I wanted my OD done like nothing else in the world.
I also, with huge difficulty, wrangled a 10 day worth of steroid pills out of my Endo, 3 days before RAI, and 7 days after RAI – for eye purposes (one of my eyes started puffing up a month before RAI). Whether it helped or not, I don’t know – I still had a year of active TED after RAI.
in reply to: Effects of RAI #1067694I was 2 days away, and for 2 more days tried to have minimal contact with my children. You probably would need to take 3-4 days off work.
But, if you feel fine on ATD, and not feeling right about RAI, you may refuse RAI. Nobody should pressure you into something you don’t feel right about.
in reply to: Not genetic #1067689Nobody in my family has had Graves, or even any thyroid problems. With changes in the environment that happened in the last 30 years or so, I would expect more autoimmune diseases appearing in people, as well as all kinds of other diseases. Some textbooks on Graves are outdated as they only stress genetic reason. The trigger for Graves is "trauma" – physical, psychological, or hormonal. Physical: a surgery for example. Some got TED just from sneezing having a cold. Psychological: dying relatives, relationship problems, economic stresses. Hormonal: puberty, pregnancy, menopause. I got my Graves during/because of pregnancies.
in reply to: Having surgery 3 weeks after RAI??? #1067734Just thinking here… 3 weeks after RAI, — if you are not supposed to take PTU (because I did at 1/2 pf pre-RAI dose, but they have different rules now)– you may have a bit of more of the thyroid hormone in your body, just like being hyper before being diagnosed. I wouldn’t think being a bit more hyper would have any effect on another surgery?
Or, some people had faster route to hypo, and being halfway to becoming hypo could be good for the surgery.
You shouldn’t be completely hypo just 3 weeks after…. Ask your endo to get labs right before the surgery, to get you Synthroid if needed.
I had a surgery under total sedation this summer, while on Synthroid, and it was no different than for the next person.
You are going to be OK.in reply to: RAI in two weeks… #1067860One of the best explanations of why the idea of achieving Eurothyroid status has consistently failed, was given by Ski in another thread recently (well, at least for me it all finally fell in place in my mind):
Ski wrote:Hi Trey,You probably will have found this info already, if you’ve been wandering around the bulletin board, but I just wanted you to know that the theory that we can take "just enough" RAI to "control" the thyroid hormone levels has been tried and has consistently failed. The reason is that any surviving thyroid tissue has the potential to react to the antibodies and cause hyperthyroidism again, given the proper "request" from the antibodies. The antibodies mimic TSH and trick the thyroid into believing the body needs more, more, more thyroid hormone, so the thyroid cells work as hard as they possibly can to follow those instructions, and ultimately that results in hyperthyroidism again. In addition, a dose of RAI insufficient to destroy the entire thyroid has the potential to damage, but not destroy, thyroid tissue, which can be dangerous in and of itself. Damaged cells behave irrationally, so it can be tough to manage thyroid hormone levels when *some* cells remain active.
I had too little RAI on my first dose (10 years ago ~ thought it’d be my ONLY dose, but no), because the dosing doctor still felt it was possible to do "just enough." Instead, I ended up with my endo recommending ATDs in the same protocol as if I’d chosen them in the first place (1-2 years to attempt remission), which was what I was trying to avoid by doing RAI. Ultimately I did a second RAI that did the full destruction, but I suffered for a couple of YEARS trying to "wait it out, let the thyroid die on its own," when I could’ve been healthy instead for most of that time.
If you’re going to try the medication, you can "undo" that decision, so that’s typically what we recommend, at least to start. Some people react badly to the medication, or have a tough time maintaining normal thyroid hormone levels, and so eventually those people must choose another treatment method. Some just decide they don’t like how they feel, or don’t want to deal with the process required to make ATD treatment work for them. Some have a VERY easy time of it on ATDs and continue taking them very long term. Some attain remission and can stop worrying for a while ~ of course, that’s after at least 1-2 years of taking the ATDs, but remission is remission. If you try ATDs and decide they’re not for you, the best choice is to get rid of the thyroid completely, whether it’s by surgical removal or RAI destruction.
Remember that you’ll need at least six weeks after you begin ANY treatment in order to start feeling much better, because it takes our bloodstream that long to flush out excess thyroid hormone. Patience is required in all things Graves’, that’s a fact.
We’re so glad you found us! Let us know how it’s going, and feel free to ask any questions you may have. We’re here to help.
in reply to: RAI in two weeks… #1067856My dose was 10 mci, too – almost 4 years ago. I don’t remember what my uptake result was like but the dose did render me hypo after 5 months. I think that "20-30% within a year" estimate sounds very low, – so far my 5 months is one of the longest I’ve read about, and a smaller percentage of people needs second RAI – so the majority become hypo.
I had a baby and a toddler when I had RAI, and I was away for almost 2 days (came home at the end of the second day). Then took precautions for a couple of days around my kids (which was harder to do than with a 5yo who you can explain).
I think the idea of stopping ATD is to have your thyroid as natural as possible, to get all the advantage of RAI. Your thyroid will take only as much iodine as it can (as the uptake scan showed), not more, even if you haven’t taken any ATDs at all. I think I stopped PTU a week or so before, can’t remember. I remember that I had to re-start half of my PTU dose a couple of days after RAI, for a week or so – to probably soften the possible dump (which didn’t happen to me until 3 months after anyways). But some people on here don’t have any ATDs after RAI, so maybe the protocol changes over time.
Good Luck
I did have OD without any real medical need (no optical nerve compression). I didn’t have muscle contraction, neither – my eyes went forward symmetrically. In my mind, OD would have been "cosmetic" surgery. But my eye Dr was insistent for me to NOT call it "cosmetic". The doctor still can code it as medically necessary.
She said I was ready for OD way back in February 2007. I was scared of these "major" surgeries — of course, like the majority is. So I took another 2 years to mull it over and to see if I could live the way I looked. I couldn’t stand pictures of myself, though, and finally I was ready for OD. Had my first eye last July, it was a slightly bigger eye, and I notice psychological difference already. – I am not as conscious of myself anymore in crowds.
If you want to do muscle surgery AND decompression, then OD should come first, because it also releves musles and your eye may straighten a bit.
Having gone through OD, I know it’s not that scary. My bruising was gone by the 10th day (a bit unusual). There is an endoscopic OD method, too, with no cutting and no blood, and results are almost immediate. My clinic doesn’t do that, so I had no choice.
I am still waiting for the second eye’s OD, and then, afew months later, lid surgery – just because it’s like gastric bypass surgery for obese people – extra hanging skin needs to be removed.
All of my surgeries were/are going to be without medical indications. I’m in Canada, so I don’t have to deal with insurers, but I read that people in USA (if you are) need to make sure that the Dr codes it properly for insurance purposes.
in reply to: Is Doing nothing an option? #1068151To put things in perspective, thyroid cancer patients (thyroid cancer is one of the easier treatable) go on and live their lives with healthy life span after taking RAI in dosages of 600 – 1000 mci.
In addition, in the latest wake of news of people dying of/with lupus (Lucy Vodden, Michael Jackson), another auto-immune disease, I am grateful that all I have is Graves.
in reply to: Allergic to methimazole and PTU? …RAI? #1067959Synthroid is not a medication, it’s identical to your own thyroid hormones. You are not allergic to your own thyroid hormones, right? I am not sure what inactive (packaging) ingredients can be in Synthroid, never researched that. But, there are other brands of thyroid hormone, down to natural desiccated thyroid derived from pigs’ thyroids.
in reply to: New here…TSH low & waiting on endo appt. #1067976Hi Melanie,
While I can’t say about the effects of medications you are taking (incl. birth control), your eyes’ state jumped out at me. Sounds like Graves eye disease! At least what I had when my eyes were "acitve" (they do burn out eventually, that is, the development stops). I did have a feeling of grit/sand in my eyes, they were sensitive to light and wind, to cold air, to air conditioning, to fluorescent lights… I never needed glasses/lenses, but I heard not once how optometrists confuse TED with anything under the sun – "dry eyes", allergy, – and astigmatism in your case.
Your TSH is not yet in the basement, (mine was < 0.001), and it would be nice – for yourself – to see where your free Ts are. The labs provide ranges, so you will be able to see, for yourself, where you are at. (Ask to see the numbers, don’t just let the Dr say, "you are OK", or "low" or "high"). It would be helpful to be sitting there at the appointment with a pen and paper in plain view, so he/she will know you intend to jot it down (unless they offer a copy to you).
The hungry feeling and eating a lot without gaining any weight could be a sign of hyperthyroidism, too. Hair falling out is (usually) a hypo sign, but many signs for hypo and hyper overlap. To see where you are really at, you need to see your FT3, FT4, and antibodies (TSI, TPO). They do an uptake scan, with iodine, to determine Graves. That was the most definite diagnostic tool in my case.
Hyperthyroidism depletes muscle and bones, – so yes, osteoporosis could be a result of it. You are not too young to get a bone density scan, they usually say, after 40?
Your sister is a curious case? Perhaps, the thyroid she got left, was just enough to produce the adequate amount of hormone?
Shaky, sweaty, trembling hands – all sounds too familiar.
I think you need to start with an endocrinologist, and she/he, together with your Primary care Dr may help filter other medications’ side effects.
take care,
My experience was, I didn’t get my dump until 3 months after RAI. Or what I think was a "dump", — a hyperish feeling, hands slightly shaking, eyes more bothered than usual. Before that, I didn’t feel any different than before RAI. Drank my fluid through the straw, got up, went out. The people were still sitting in the waiting area. I felt no different. Got in the elevator, still no different. 1 hour later, no different. The night, the next morning, etc – no different. (I took 1/2 dose of pre-RAI PTU for a couple of weeks, then nothing). There was no difference for 3 months. No rapid heartbeat, neither. Everything was laying low and "normal" (the labs were normal, too). Then that hyperish feeling 3 months later, that lasted for 5 days or so. Then nothing again. 5 months later, the labs showed hypo, finally, but I didn’t feel it.
So for me personally, the life wasn’t any different for the 5 months after RAI, from any time before Graves. Of course I was listening to myself more than normal ("What’s happening to me?"), and that was the only difference.
in reply to: how do you get over the anger? #1068100KAM wrote:Hi again,On behalf of moran husbands every where may I say this. Yes we worry and no we don’t show our emotions like women do. We like it when you take time for yourself, it lets us step up to the plate and show of our good stuff. Hockey, you sound so much like my wife when our kids were young. Trust your husband, he may be a moran but he’s not stupid. You may also want to treat it as a bit of training for yourself. Our kids are all in the upper teens now and we have been taking week long trips to the Boundry Waters Canoe Area for the past six years. You’d be surprised what you can live on for a week. Not to mention what we smell like after a week. Your kids are going to grow up and they may want to go wilderness camping with their dad. No phones, no radio, no computer, nothing, see yah when we get back. It’s heaven. Take the time, relax and be nice to yourself the big guy’s got things covered.
Kam
Oh this is so sweet. I know with all my heart, that our husbands, who stand by their (mental) women, are the salt of the Earth. It would be so easy for them to give up, but they keep standing by.
It is not easy for us, though, during our off-level times, to control ourselves. To start with, we are controlling types, and Graves exacerbates that. Thank You for weathering us.
in reply to: 2 months post RAI and HYPO, HOORAY! #1068077Wow that was fast! Congrats! You did RAI pretty soon after the diagnosis, maybe it’s the earlier done, the faster the results? I feel like if I hadn’t waited for 3 months after my diagnosis (during which my eyes got involved), I might have gotten out of the hole faster, like you. But, who knows.
Good stuff!
in reply to: Weigh-in (just for fun) #1068761I used to be able to fast when I was younger…. Don’t know what happened to me, but now the thought of "fasting" makes me anxious, and uncomfortable. Since having kids a few years ago, I [b:3u38irbb]have to[/b:3u38irbb] eat? I come from a culture where it is thought of as healthy, to have "an apple Wednesday" or any weekday with any small amount of food, and water. I know that it helps the body to get rid of oxidants, along with eating anti-oxidants, but the thought makes me uneasy now. Thinking of eating under 1000 cal a day, or about calorie-restricting diet, makes me uneasy again. What is wrong with me????
So instead of limiting the intake, I would rather concentrate on being active and getting rid of the intake.
I’ve felt that I needed some sort of a boot-camp to jump-start my activity level, and never let it fizzle. I think I’ve found a solution. With the winter season coming, I have signed up for ski patrolling. To ski 11-hour days!!!!
Never skied as many hours a day, but what the heck. Hopefully will get a nice firm bod after this amount of exercise! 
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