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Hopefully, like me, you will discover that once your thyroid levels are well-regulated, after surgery or RAI, you won’t have to worry about having panic attacks ever again. Mine completely went away with appropriate treatment for my Graves. One thing that did help me, while I was still having the attacks, though, was to know that the body doesn’t sustain the adrenalin rush (or whatever it is) for very long. Twenty minutes or so is about how long an attack lasts on average. Knowing that, somehow helped me get through them until they went away, so I pass it along.
in reply to: PTU and Liver failure #1065631It’s an interesting issue. And I have thought about your point of view, and frequently. Try as I might, though, I cannot see any difference between our situation — a body part diseased by antibodies — and a situation in which a body part is diseased due to some antibiotic resistant bug. If you cannot get rid of the disease-causing agent, and the body is being sickened by the diseased part, you have to get rid of the diseased part , whether it is a gangrene-infested foot, or a septic appendix, or a thyroid. I think we are lucky. ATDs can provide a barrier to the disease making us ill providing we can tolerate them well. AND, we can live long and healthy lives without our thyroids. We very often have two reasonable choices.
in reply to: PTU and Liver failure #1065629As I understood things, in this thread, a doctor was recommending RAI to his patient because of recent information about liver failure as a result of taking PTU. The patient in question cannot take methimazole. This was not a question of "which treatment option should I pick because all things are equal." Obviously, when all things are equal, and a doctor has given us a choice, there can be a range of decisions. But a doctor, in this case, has strongly recommended discontinuing the PTU. This is not a situation in which arguing the merits of ATDs makes much sense to me. I tried to word things originally in such a way to provide a different perspective for the person posting the issue, not to trigger an argument with those who chose — and are happy with — their ATD treatments.
in reply to: PTU and Liver failure #1065623Just another bit of information to add to what SKi has pointed out. When I was diagnosed with the eye disease it was called GRAVES associated opthamopathy (or whatever unspellable medical term it was). During the course of my eye disease doctors and researchers changed the name of the disease to THYROID associated opthamopathy, or thyroid eye disease. I asked my oculoplastic surgeon about this, and was told it was because the medical community was finding the eye disease in other patients who had never been hyperthyroid (i.e. had Graves) but had some type of thyroid disorder. That being the case, while a treatment might aggravate the symptoms of the eye disease temporarily, obviously it cannot be the "cause."
And, throwing in another comment on PTU and liver failure issues. The reason I chose to have my thyroid removed was because I realized that by any definition of the term, my thyroid was permanently diseased. It made little sense to me to risk my healthy liver to "save" a permanently diseased organ. I offer this as another perspective.
in reply to: what to do & how will I feel after?? #1065588No one can tell you what your best option is, except perhaps your doctor. I did RAI. What were the side effects? There was a soreness in my throat for a while, but not enough to take pain killers. Other folks have reported a very sore throat, and the need to take painkillers. Essentially, thyroid cells are being destroyed, and there is some inflammation that accompanies it. About one week after RAI — give or take some days — the dying thyroid cells dump their stored supplies of hormone into the body. These cells are not making "new" hormone, so the period of increased hyperness is limited to a few days. But some people, who were not told to expect this, get scared thinking something is wrong. Many of us were given medication to help us through the days when this dumping could make us most uncomfortable. Many people online told me that becoming hypothyroid was a "side effect" of RAI. I didn’t agree: the whole purpose of RAI (from my point of view and that of my endo) was to make me hypothyroid, so that I could never easily go hyperthyroid again. But I guess it depends on individual perspective whether or not you think this would be a "side effect."
How long it takes an individual to go hypothyroid after RAI depends a lot on individual factor: the dose given, how much made it into the thyroid, etc. I went hypo within about five weeks. Other folks have taken longer, and in some cases, much longer. I have heard that about 10% of patients must repeat the procedure. This is the same "failure" rate as we are given for surgery, though. I suspect the failure rate for both is associated with how much thyroid the administering doctor is trying to remove. If the doctor is trying to make someone "euthroid" (normal thyroid levels) it is more likely not to work. It is very difficult to guess-timate how much of a dose would be needed to place someone within normal levels.
in reply to: Questions about "Mild Graves" #1065693Good for you for pushing the endo to listen. I consider the words " a little bit hyperthyroid" to be a bit like a "little bit pregnant." You either are or you are not hyperthyroid. If you are, it needs to be treated. In a newsletter that was published for a while by an organization called the American Thyroid Foundation, a doctor wrote that studies were finding that being even subclinically hyperthyroid — i.e. slightly — had been shown to cause ALL of the bad long-term issues associated with the more powerful forms of it. More to the point — you know that you are "off" and have been for a while.
Basically, the dose of methimazole IS based on the lab numbers for thyroid hormone, not how you are feeling. You don’t want to take too much of it, and fall into definitely hypothyroid territory, which is another diseased state. Being put on it all all means that your thyroid labs fell outside of the range of normal, on the hyper side. It is good that you are being treated.
Within the lab values that are considered "normal," however, we can indeed vary– one person to another — as to where we feel the best. For me, the middle to hypo end of normal is MUCH more comfortable than the hyper end of normal. For other people, however, it is the reverse. As you deal with this disease, you will come to decide where you fit within that normal range. One helpful way to do that is to keep a copy of ALL of your lab work over time. You can jot, on a post-it note or something — symptoms, or lack of symptoms, if you wish. Don’t expect, however, a specific number within normal to feel "right" all the time. Unfortunately, there are lots of things that can make us "feel" hyperthyroid (wired) or hypothyroid (sluggish), when, in reality we are neither of those things. It makes it more complicated, for sure.
I do hope you are feeling much better, and soon.
in reply to: MY EYES!!!!! #1065702Don’t panic — many of us get "some" eye muscle changes with Graves. Most of us do not get horrid eye disease. That said, Thyroid Associated Opthamopathy is a DISEASE of the eyes and insurance companies should pay for you to see an opthamologist about it. They will not, typically, pay for optometrists or oculists so that we can get our glasses, or get routine glaucoma tests, etc., but this "should" be different. Who knows, really. It makes me furious when my insurance company tries to act like it is a doctor. It was one of the things I was hoping would change with health care reform. Nevertheless, you need to be seen by an opthamologist. Endos do not, cannot treat the eye disease. My own insurance company, long ago when my eye disease was active, tried to tell me that I had to see an optometrist for it. I suggested to them that next, they would be making shamen or other none MDs the "gatekeepers" to their clients medical needs. The idiots. They paid for my opthamologist, but I switched companies at the first possible moment.
Next. If your eyes are feeling dry, and hurting with it, you need to be using artificial tear drops. A huge percentage of us with Graves have to do this. For whatever reason, thyroid disease can change the consistency of our tears. They become more watery, less viscous, and do not sit on the eye long enough to truly lubricate it. The eye dries out, even though we can be seeing lots more tears than usual. The type of drop we need is readily available in drug stores and supermarkets (typically). It is not the "get the red out" type of drop, nor is it the type of drop that is used for allergies. There are several different brands, and they are "artificial tears." There is a couple of daytime formulas — drops and gels. And there is a night-time formula that has the consistency of petroleum jelly. Our eyes sometimes will not close properly at night, so while we sleep the eyes can REALLY dry out, and the thicker goop helps more than the drops do. We are usually told to use the type of drop that comes in single dose dispensers, which contain no preservatives. The preservatives can aggravate the eyes, making things seem worse. It is important, however, to use something because dry eyes can make it more likely that the cornea can become damaged. I got something in my eye one morning, and it took forever for it to heal, because dry eyes do not heal as well as normal eyes do. So, please keep your eyes well lubricated.
in reply to: Thyroid Hair #1065716Hair slowly returns to normal, typically, once we are at controlled normal levels of hormone. Hair and nails are considered "expendible" by the body, so they are the first to suffer when someone is ill, and the last to recover. I stopped perming my hair when I was hyperthyroid. I understand that certain types of hair coloring products might be too harsh for some folks while they are ill — but it would be a good idea to check that out with your own colorist.
As for contacts, I tried the special ones for dry eyes, like Ski mentioned, and after about two hours it felt like I had suction cups attached to my eyes. I gave them up.
in reply to: ~Follow up to my insurance mess~ #1065803Whoever gave you the suggestion to just go there, and refuse to leave, may have given you some very bad advice. It sounds to me like a recipe for you getting arrested: all they’d have to do to get you to leave is call the police. I hear your anger, and frustration. I do understand. My own child had a similar problem. But at some point, we had to accept the very unpalatable reality: there was nothing more we could do. Not having control over something as basic as health care needs is supremely frustrating.
in reply to: So… could I have had it as a child even though…. #1065749During pregnancy the body suppresses the immune system a bit, to avoid the possibility of antibodies being created against the baby, and our overall antibody levels go down. AT least that is the (probably over-simplified) way I understand things. It is very normal during pregnancies for women already diagnosed with Graves to need less or none of the medication that suppresses excess levels of thyroid hormone. When the antibody numbers go down, the symptoms abate. Then, after the pregnancy, these women typically have to go back onto the medication to control their thyroid levels.
in reply to: Why arent their ever any resources in my area? #1065744I spend half of my year out in the West. I go into Oregon frequently. It is such a beautiful part of this country.
I know it is frustrating not to have support systems close by, but I live in a major city, and there is no support group here, either! IF you look at the list of where the groups are, you will see that it’s a pretty short list. Most people have to rely on internet "virtual" support groups, rather than the real thing. It may not be ideal, but it can help.
Wishing you a good day,
in reply to: Iodine and no thryoid #1065761One of the reasons iodine was added to salt was to eliminate a type of avoidable mental retardation caused by hypothyroidism due to iodine lack.
in reply to: Recommended Reading #1065768Yes, there used to be a recommended reading list. I wrote the administrator of the site and am waiting to see what the answer is. I did get a response that the list might have needed updating (i.e. the books were no longer in print, prehaps)…. Anyway, I still don’t know.
in reply to: Recommended Reading #1065765I cannot find it, either, Joy. I’ll check.
in reply to: EYE LUBRIDANT, EYE DROPS #1065783I made the comment about insurance not covering meds available over the counter because I had been on a prescription of an allergy pill that suddently went OTC. I immediately got a letter from my health insurance company pointing out this fact, and giving me a one-time coupon to buy it, and telling me that since this was now available without a prescription they would no longer be paying for it or ANY similar drugs. (I.e. even a prescription based allergy med that was "similar" to what I had been taking would no longer be paid for, even if my doc wrote the prescription.) Obviously, different insurance companies have different approaches to things, so checking on your own would be a good idea.
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