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in reply to: I Definately have GD ;-(…. #1175961
Hi, Edy. Take a deep breath, and do not panic. Our disease is treatable. And we do get well again with the proper treatment.
Weight gain is not something you should factor into your treatment decisions. The weight we lose (or gain) while hyperthyroid are complicated by losing muscle. Muscle weighs more than other tissues, but it also burns more calories than other tissues do. So having more muscle will “look” like weight gain, but will mean that you can eat more without gaining weight. Some of us actually gain weight while hyperthyroid, though, due to lost muscle (at least in part), and our weight issues tend to go back to whatever normal was prior to the problem.
When we regain normal levels of thyroid hormone, lost muscle slowly comes back.I would have a serious discussion with my doc if I had hepatitis C and was diagnosed with Graves. My questions would be about whether or not the antithyroid drugs — which can adversely affect liver function — are appropriate. I do not have an answer to this. But it is an issue that should be explored.
I do wish you good luck, and better health soon.
No, Vanilla Sky, your doctor was not wrong. Why would you assume the doctor was wrong? Why would you assume your doctor would lie? Why wouldn’t you assume that the patient( the amateur, if you will) has gotten it wrong? These health decisions are complicated.
And, yes, antibodies can linger after removal of the thyroid. Reality. But antibodies are like keys to a lock. Just because you have a key, it does not mean you can open any old lock. Antibodies are not lock PICKS. They are keys. So removing the lock (the thyroid) puts those antibodies out of business. They can no longer make you hyperthyroid, which is the life-threatening condition.
We have three treatment options that can give us back normal thyroid hormone levels. They are RAI, surgery and ATDs. They may none of them be perfect, but they are hugely better than the possibilities offered to many other folks suffering from autoimmune diseases. We CAN get our health back. That’s the bottom line.
in reply to: Few things to help you feel better. #1175496Only one study that I know of showed the 80% remission rate. It was never duplicated. It is not considered even remotely relevant to our treatment options. Remission rates in the U.S. and comparable countries range between 20% and 30%….for a first remission. Second remissions are considerably more rare statistically.
in reply to: FT4 and FT3 question #1175523The “elegant” solution to our Graves disease will be when doctors can isolate the “bad” antibody, and shut it off. (Or, rewire the furnace, if you want to use my analogy. ) We do not have that solution yet, and it may be decades away. In the meantime, however, you might consider the old Rolling Stones song. “You can’t always get what you want…..but if you try sometimes, you must might find, you get what you need.” We have three treatment options that work to give us back our health. We have what we NEED at this point in time. We are lucky that way. There are a lot of my friends, with other types of autoimmune diseases who have no such effective treatment options available to them.
Bienvenue, Noisette.
While many of us might have experienced heartburn, it is not a common symptom of the Graves/hyperthyroidism. Sometimes the stresses of being hyperthyroid can cause other problems to arise (in my case, my gall bladder went wonky). It would make sense to talk with your doctor about it to see if there is a fix to bring you some relief.
in reply to: FT4 and FT3 question #1175519It’s interesting how we all see things differently. You see the thermostat as being “broken.” I don’t. The thermostat is only broken in the sense that the wiring on the furnace got fried, and the furnace is running non stop, no longer responding to the fact that the thermostat has turned itself off. My thermostat (now that I’ve gotten rid of the malfunctioning furnace) is working just fine.
It is a terrible idea to mess with the meds yourself. We cannot tell what the medication is doing without tests, and if we’re not taking a consistent dose of the meds, the tests will not reveal what is going on. When something like an irregular heart beat occurs, you should call your doctor. We patients often make assumptions that are not quite valid. Sometimes we do, a lot of times we don’t.
You need to talk with a medical professional when you have concerns like these.I have no idea how long you should wait. Or if you should wait. I think you need to start working better WITH your doctor. Part of that will involve fessing up to tinkering, on you own, with the meds. He/she cannot give you valid and good advice without knowing precisely what is going on.
I think it is important to understand that the internet makes things seem more frequent, more common perhaps, than they really are. We see posts on this board, and assume it is the “Graves World,” when it is not necessarily true. We are, here, a self-selecting group that has access to internets and computers, and is motivated toward “support group.” There are many individuals who go to their doctors, get their doctor’s advice and do not show up here. There is more to the Graves World than boards like these.
It is my understanding that our endos prefer RAI to avoid the unnecessary risks that surgery imposes. Those risks are minimized if you live in a location where there is a very good thyroid surgeon, who does lots of these surgeries with a small percentage of complications. But a lot of us don’t live in such places.
It is likely, Amy, that all of us have “some” eye issues. One article that I read long ago from the ATF, stated that with new, soft-imaging techniques our doctors were finding “some” eye muscle changes in the majority of us with Graves. Having “some” changes does not mean we go on to get significant eye disease. People with already existing pronounced eye disease seem to be encouraged, (at least it appears so based on this board — which may not be a completely accurate assumption….see comment above) in recent years, to do either a thyroidectomy OR RAI combined with prednisone. For the rest of us, RAI alone is a viable option.
in reply to: Sub-clinical Hyperthyroidism #1175458Hi, Amy: Yes, I did RAI back in 1996. It took a number of months to get my replacement hormone levels correct. And, over the past 16 years my dose of replacement hormone has been tweaked a handful of times. I consider it an easy fix when things go slightly out of whack. It is most definitely not a constant battle — for me at least — to find the right dose. But it does take time, at first, to get it properly calibrated.
in reply to: 2nd Dose RAI #1174806I haven’t heard of doctors recommend RAI more than twice for Graves’ patients. Cancer patients may be a different story.
Note that the research article is from 2001, so there have been 11 years for follow-up studies. Sometimes research studies show very clear indications, but can never be duplicated. Without being duplicated those studies fall out of favor. I don’t know if this research has had successful follow up, but it is necessary part of how we go about learning more over time.
in reply to: What causes a bad day? #1175440Fatigue is a huge part of Graves. We sometimes get the misconception that because we are REVVED!!!! we should have energy. Nope. The way I tried to explain it to my family was that my “resting” heart rate was so high that even a slow walk to the mailbox was at the “aerobic” level of exercise. Nobody sustains whole days of aerobic levels of exercise without fatigue.
Hot flashes. Yes. There are ways to try to cope, but that’s about it until we get our levels under control. And, then, of course there’s menopause. I’m still getting the odd hot flash 10 years after menopause. (I’m sure you didn’t need to hear that, though.)
Nausea. No. But I’m sure that you encountered many days in your life so far when you have been squeamish for no well-understood reason. Given that tapazole is new to you, you might keep it in mind as a causative agent, but most of the time people tolerate the drug very well digestively, so it might just be that (unfair as it seems) you have another issue plaguing you temporarily.
And, of course you feel lousy. You may have expected the ATD to start making you feel absolutely normal quickly. It won’t do it, unfortunately. While the ATDs do start working immediately, we are not always on the correct dose at first. AND, the thyroid cells not only make hormone, but they store it for future use, so until the stored supplies are used up, you won’t feel much of a change from the ATD. AND (as if that wasn’t already too much), it takes our bodies time to heal once we get to the correct dose….whether it is replacement hormone or ATD. We have to wrap ourselves up in a cloak of patience for a while, and look for minor improvements along the way back to good health. It does not happen all at once, unfortunately.
in reply to: Sub-clinical Hyperthyroidism #1175455The heart issues are serious ones to consider. When we are hyperthyroid, our heart is stressed. And we can be thrown into arrythmia because the system that controls heart beats can go suddenly out of whack. Going into and out of hyper isn’t good for us either because our bodies don’t necessarily heal properly in between bouts. My point of view, stated here on the board from time to time, is that it is possible to live very well without a thyroid. I do. Several of my friends do. So, trying to save the thyroid, at the expense of an organ that is vital makes little sense to me.
If you are unwilling to accept your doctor’s advice at this point in time, you might consult with a cardiologist, or another endo to get a second opinion.
in reply to: Joint/Muscle Pain – How common? #1175022Well, numbness isn’t something I experienced, but the swelling was. I would suggest that you CALL the doctor’s office and explain that you think you need a blood test to see where your levels are. Some of us do start going hypo 8 weeks after RAI, and the sooner you get that stopped, the better.
We do not need to go terribly hypo before our doctor’s will intervene, so don’t panic. The replacement hormone, once it is prescribed, starts to work immediately.
Typically, the WBC test is run when there is an infection, and, perhaps once during the early months of taking ATDs — if then. Expecting our doctors to do these tests more frequently for our peace of mind may not be the best way to use your health dollars.
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