Forum Replies Created
-
AuthorPosts
-
in reply to: 2nd Dose RAI #1174802
Right, Naisly. I had a mind blip. Thanks for the correction.
in reply to: New lab results #1174835Hi, Amy: I have a relative in Seattle, and I DO know what you mean about feeling cold there. I think that the coldest I’ve ever felt was one day in Seattle, when it was 47 degrees and raining, raining, raining. I couldn’t get the chill out of my bones.
Drugs have different side effect issues for different people, so it is possible that your body doesn’t “like” the methimazole — isn’t able to process the toxic by-products of the drug’s metabolization quickly enough. I don’t know how you effectively test that out, though, unless your doctor is willing to try PTU (which has fallen into some disfavor recently due to evidence that it is harder on the liver than methimazole is). Anyway, I do empathize because I didn’t tolerate PTU well, and hated the way I felt at “normal” labs. I was terrified of surgery, so I did RAI and have never, ever felt as bad as I did while “normal” on PTU. We don’t have a magic “feel good” pill available to us, but it is possible that you will tolerate the replacement hormone better than you do the ATD. REplacement hormone is chemically identical to the body’s own T4, so the side effect issues are pretty much limited to taking too much (hyper symptoms) or taking too little (hypo symptoms).
in reply to: Hello and thank you #1172978It’s good to hear that you are doing so much better.
in reply to: Labs are a no-no here but… #1174852If I had to guess at the reason for the aberrant lab results, I would suspect a technical “goof,” unless you are seriously symptomatic of hypo which you do not mention. Your blood results could theoretically have been confused with someone else’s in the lab.
Regardless, your endo should receive these results and someone in his office should be able to discuss them with you, no? If not, send a copy in a letter to the endo asking directly.
in reply to: Life After RAI–adventures of radioactive man! #1174676Hi, Geostyv
The key to not “going over the cliff” into hypo, is to have periodic blood tests at rational intervals. My doctor had me have my first check at 5 weeks and I had “just” gone over the hypo bump (it was not a cliff — I felt fine, and was functioning well). What I experienced with hypo (TSH of no more than 13) was that while I was a bit fatigued at times, I could work through it. I could get out, get a bit active — like taking a short walk or something — and I would feel better. When I was hyper, I was fatigued, and if I tried to do anything, I felt worse. So, what I’m really saying is that you shouldn’t borrow troubles you might not experience.
Wishing you a steady progress towards good health,
in reply to: 2nd Dose RAI #1174800Well, the recommendation for the second RAI treatment in November is, approximately, six months after the first one. I only point that out because if, indeed, it takes as long as six months to get the full idea of how well it worked the first time (or didn’t work), then preparing to do it again in November might not be jumping the gun. Second, allowing the hyper condition to continue is obviously not good for anyone. So the choice is most definitely appears to be to either do a second RAI or go back on the antithyroid meds.
If Ski gets back from her vacation, she can tell you about her second RAI.
Our disease is caused by antibody levels which can rise or fall for no well-understood reason. And, while stress does play a role in aggravating our condition at times, stress is pretty much a constant in today’s world, and we can still go into and out of remission.
It’s great that you can go without the meds right now. I hope you do continue to feel well.
in reply to: Average mCi dose #1174790I don’t happen to know what an average dose might be. I think, though, that today’s dose is typically larger than the one you received. They still factor in the results from the uptake and scan tests (size of thyroid, degree of activity), but most of the time nowadays our doctors seem to have the intent to “ablate,” (destroy), whereas many years ago, they were often content to try for “euthroid” (normal levels of thyroid), and accept hypo if it came, or do a second dose of RAI if the first dose wasn’t sufficient.
in reply to: 6 Year Old Son with Graves Disease #1174777About one week, give or take, after RAI, we are a lot more hyper than we were before due to the damaged thyroid cells dumping their hormone into the body all at once. After the dump, we then start to go hypo, some of us faster than others. I remember quite stunningly painful calf cramps post RAI. It would wake me up, and I would have to stretch out my heel to try to get it to go away. I tried stretching exercise (mild ones), warm baths, and extra bananas to avoid the painful episodes. I’m not sure how much good any of this did, other than psychologically. I attributed it to the fluctuation of thyroid levels. Hyper is very hard on muscles. Anyway, Kimberly’s advice to talk with the doctor is good. But in the meantime, try to get your son to describe where the pain is. If it is his calf, have him lie down, and lift the offending leg and extend the heel to stretch out the hamstring. That usually provides rather immediate pain relief.
One year after my RAI, we went to Europe, and I got to a place that was high on my list of places I wanted to see — the Mont St. Michel. It is a tiny island off the coast of France, with an abbey on top, that has been a place of pilgrimage for over 1600 years. The climb to the abbey is about 200 feet or so from the entry gate. And I did it, without problems, and felt like Rocky on the steps of the Philadelphia Art Museum. I hadn’t been able to climb a flight of stairs the year before.
Since then, I’ve spent my summer hiking in the Sierra Nevada mountains. I’m not fast, but I can go up 1100 feet (think of a 100+ story building) and hike for miles.
We DO get well again.
in reply to: TED – no treament except eye drops #1174752Sasha, the treatment options available to our opthamologists for the TED have serious side effects or potential complications or both. As a result — and also due to the fact that TED does tend to subside some all by itself once the cold phase has come — our doctors tend to wait and watch. It is terribly frustrating when you are having symptoms to have the docs do this, but it is typical.
in reply to: Life After RAI–adventures of radioactive man! #1174674Geostyv: About one week after RAI dying thyroid cells release their stored supplies of thyroid hormone into the blood, causing us to be more hyper than normal for a few days. Keep the positive thoughts going. If you are feeling more jittery, fatigue, etc., it means the RAI is “working” to bring you back to health. (We feel fatigued while hyper, too, although you may not have noticed that symptom as much if you were subclinically hyper.)
in reply to: TSH under 1 #1174735Well, I happen to believe that there is a wide normal “RANGE” for a reason. I also tend to believe that some of us are more “normal” — for US — at one part of that normal range than at another. While I tolerate near hypo levels of hormone well, without symptoms of any type (including weight gain), I do not tolerate near-hyper levels without symptoms. I think our doctors should listen to us about things like that, so long as we are still “within normal.”
in reply to: TED symptoms or no? #1174739At an NGDF conference many years ago, asymetrical involvement of the eye muscles was discussed as an indicator of TED. In other words, it was not expected — back then, at least — that both eyes would be impacted identically. Obvioulsy, I’m not a doctor, so I am not “up” on the current research.
As far as “typical” early symptoms of TED, I’m not sure there are any. Some folks have rather serous extrusion of their eyes (protopsis, or exopthalmos), without doubling of vision, while others of us have doubling without significant exopthalmos. Also, having “some” symptoms of TED doesn’t mean one will go on to having all of them. I had serious doubling of vision, but did not go on to the type of horrid eye disease that others of us get.
I eventually was given an ultrasound of the eye muscles that demonstrated TED — although the diagnosis had been at least tentatively made before then.
I never experienced the sensation of “pressure.” That does not mean, however, that it is never an indicator. It just was not part of what I experienced.
in reply to: Does everyone gain weight with a TT? #1174693It isn’t about what treatment option you choose. When we are hyperthyroid we lose muscle mass. Losing muscle mass causes us to lose weight, because muscle weighs more than other body tissues. But it is horrible weight to lose. Losing muscle makes us weaker. The heart is a muscle, remember, so some of the weakening goes to the heart as well. When we get back to normal levels of thyroid hormone — by whatever treatment means we choose — at least some of the lost muscle slowly comes back on, and this looks like weight gain. It is weight gain. But it means we are getting strong again. Some of the weight we lose while hyper may be due to the higher metabolic rate caused by being hyper. And we may get used to eating more as a result and have to change portion sizes to accomodate the lower metabolism associated with normal levels of hormone. But the key, for me was to understand the lost muscle, and the weight issues associated with that. As soon as I was able to exercise, I did, to strengthen the returning muscle. And I did gain some weight, but I did not go up in clothing size when that happened.
As for your question about going hypo after the surgery. Yes. And no. “Hypothyroid” is a technical term that simply means that the body has too little thyroid hormone….a lower than “normal” level of thyroid hormone. When we have surgery or RAI and the thyroid is removed, the whole point of the procedure is to remove the thyroid. So, yes, you would be hypothyroid, if nothing else were done. But then we take replacement hormone. Replacement hormone (the levothyroxin types) are chemically identical to our body’s own T4, which is a sort of timed-release thyroid hormone (layman’s terms). It is converted in the liver and other parts of the body into T3 which the cells use. So, on a proper dose of replacement hormone, we have normal levels of thyroid hormone in our bodies and we are NOT hypothyroid.
-
AuthorPosts
