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in reply to: Newly Diagnosed Hyperactive/Grave’s Disease #1067266
Muscle usually comes back once we are at controlled, normal levels of thyroid hormone. It isn’t strong muscle at first: it needs to be exercised wisely to develop strength and stamina. But it does tend to come back.
in reply to: Grave and Bulging eyes #1067268Yes, we can develop the eye disease at any point in time — before, during or long after treatment. Currently, it is thought that the eye disease is separate from Graves. Since I was diagnosed and treated in the late 1990s they’ve even changed the name of the eye disease from Graves opthamopathy to Thyroid Associated opthamopathy because folks who have never been hyperthyroid, but who have other thyroid diseases were turning up in enough numbers for the medical community to theorize that the eye disease has more to do with thyroid problems than just Graves problems. REgardless…..In one medical bulletin I read an article speculating that 100% of us have "some" interior eye muscle changes when we have Graves. Apparently with the advent of soft-tissue imaging techniques, our doctors were finding "some" eye muscle changes to be prevalent. Only a small percentage of us, however, develop truly bulging eyes and the accompanying difficulties.
There are some changes in the appearance of the eyes when we are hyperthyroid that have little or nothing to do with the interior eye muscles, but make it appear that our eyes are starting to bulge. The muscles of the upper lids retract (pull back) due to tightening of the muscles that control them (the lids). So, we get a wide-eyed look sometimes. The eyes are not actually protruding with lid retraction, even though it appears that way. This typically goes away when our thyroid levels return to normal.
If you become concerned about your eyes, the best course of action is to seek out a good opthamologist (the MD that treats eye diseases). There is nothing they can do to prevent the eye disease from occurring, but having your eyes monitored can be a comfort. If you turned up in the small percentage that develop significant problems, you would have a doctor you knew at your side, which is also helpful.
in reply to: Still fighting to find insurance somewhere… #1067273You are going through such a difficult time!
First, we do not "need" an endo to control our thyroid levels. Any good internist or GP can help you. Endos may be the best bet, but not at $400 a pop. Eegad. I live in one of the most expensive areas for medical coverage in the U.S. and my endo –a doctor I think is fabulous — only charges me about $100 a visit. (I know this because she dropped out of my own insurance plan a few years ago, and I made the decision to continue going to her.) Not that that helps you. But if I could not go to her, I would definitely go to my current GP, who is a very thorough, thoughtful doctor. You absolutely MUST make sure that you are getting your meds (whatever they are) and your blood tests at whatever interval is needed for your particular treatment plan for Graves.
You could try going to an independent insurance agency, and talking to them about insurance options. There may be a health cooperative close by. You might be able to buy catastrophic health insurance (i.e. one with a HUGE deductible, but one that would at least protect you in the event of some horrific health event) at a somewhat cheaper rate. If you had something like that, temporarily, until you get your financial feet back under you, the pre-existing condition issue wouldn’t come back to bite you.
Things sound completely overwhelming for you. I doubt this post is much help, but I do wish you a better day today, and tomorrow.
in reply to: Post RAI changes in muscle and other feelings #1067288Well, since replacement hormone is chemically identical to T4/thyroxin it can make us hyperthyroid if we take too much of it. And, sometimes, when we are in the process of trying to find the right dose of it, we can find that we have been taking too much. The ONLY way to determine accurately whether the dose we are on is the correct one or not, is to take it for about six weeks and have blood tests done. My endo preferred that I wait three months, but would check after six weeks if I thought something was "off." If we take blood tests too soon, we can find ourselves on a hormonal roller coaster. The one time my endo checked before that six weeks had passed, I ended up with too high a dose of replacement and did indeed become hyper again. For whatever reason, it takes time for the body’s feed-back mechanism to accurately reflect the impact of a dose of replacement hormone. I do understand completely how you want to avoid being hyperthyroid. But 62.5 is a reasonably small dose of replacement, not a large one (I’m on 150, just to give you a bit of perspective).
I also remember, when I was first put on replacement hormone, that I seemed to "feel" it more than I do now, twelve years later. I have had my dose raised without it making me feel jangly. I don’t know whether that’s because I was obsessing about hyper symptoms and actively looking for them, or whether my body was just oh, so tired of thyroid hormone! Whatever. I do hope you are feeling better soon.
in reply to: An emotional battle #1067296Hi, and welcome to our board.
Thyroid hormone is used throughout the body. So our brain chemistry gets messed up along with the rest of our systems.
Fatigue is a very common symptom of being hyperthyroid. Most folks assume that if we have too much thyroid hormone, we will have lots and lots of energy because everything is running faster…. No. Precisely because every cell system is being asked to work too hard, we are, typically, tired. And we don’t sleep well — our thoughts rev during the night, and we wake up, temporarily energized, perhaps, only to wind down again quickly.
It is also very common to go from zero to maniac in ten seconds or less. Moods are very volatile typically, and we have to learn to distrust our emotions until our thyroid levels get back under control. I remember bursting into angry tears over a computer game I was playing with my son. So stupid. Fortunately, I had enough presence of mind to tell him that nothing was his fault, I was just having a rough day with thyroid problems. Also, fortunately, he was old enough to understand.
More than likely, the "daily medicine" that was offered is something we call an antithyroid drug (ATD) on this board. There are two different pills possible. One is called methimazole (or brand name Tapazole) and the other is PTU — shorthand for an unspellable, long chemical name. What either of these pills would do is provide a chemical block to the production of thyroid hormone. The goal is to take just enough medication to block just enough thyroid hormone production so that you become euthroid (normal thyroid hormone levels) again.
There are other treatment options suggested sometimes. The good thing about going on the ATD is that it can give you time, and space, to find out about the disease, the other treatment options, and what you can reasonably expect from them.
Whatever you do, start the medication. Do not put it off while you do more research. Do your research while on the meds. People who are hyperthyroid risk serious complications if they do not regain controlled normal levels of hormone.
I hope you are feeling much better soon.
in reply to: Help! Losing my hair!!! #1067405I know it’s scarey when the hair falls out in tresses, rather than in single hairs. I had it happen to me, too. I have collies, and there were times when I was losing hair like they do. It occurred for me when I was going through major fluctuations in thyroid hormone, particularly when I went from hyper to hypo. At the time, other, more experienced Graves’ patients, told me that it wasn’t going to make me bald, etc. etc. And they were correct. Unless someone has an autoimmune that causes baldness — in addition to the Graves — the hair loss stops, and the hair returns. Just take especially good care of your hair while you are recovering from the hyperthyroidism. Don’t back comb it; don’t use harsh chemicals on it. It IS fragile for a while. But it regains its health a bit after we have regained ours.
in reply to: Pounding heart after RAI…few questions #1067384When I was experiencing the heart palpitations, I went into Merck’s Manual to read up on them. They are very scarey. But, apparently, they are typically just a problem of sensation, rather than a problem of heart beat. We are AWARE of the heart beat during "palpitations", even though we normally are not. You might want to go into a book like that and read up on them. It really helped me not to be afraid when I experienced them.
in reply to: Answers, anyone? #1067336"our" and "we" = the general experiences of people who have been hyperthyroid/have Graves. If you read through the archives, you will see the same topics, the same experiences, with different names, over the past twelve years.
in reply to: Answers, anyone? #1067334Hi, and welcome to our Board.
I cannot answer any of your questions on blood pressure. It would be a good idea to write these questions down, so that the next time you are with your doctor, you can ask him/her.
Weight issues are complex with hyperthyroidism. Being hyperthyroid causes us to lose muscle. Muscle weighs more than other tissues, but it also burns more calories, even at rest, than other tissues. So, while losing muscle can look like weight loss, it is really bad weight loss. Because we lose muscle, sometimes even while hyperthyroid, we are taking in more calories than our bodies are using, so some folks do gain weight while hyperthyroid. Once we get back to controlled normal levels of thyroid hormone, the muscle tends to slowly come back. This can look like weight gain. In short form, the disease has messed with our metabolism in a big way. The best thing to do is to gradually get exercise, once your doctor has allowed it, in order to strengthen any returning muscle. And, of course, we need to eat prudently. I don’t mean "dietting" (as in weight loss attempts). Our bodies need good nutrition to help in the healing process. As long as you are eating wisely, and getting exercise, your weight issues should come under control again.
Calcium supplements (or vitamins in general, for that matter) need to be taken well apart from our replacement hormone dose. The reason for this is that the minerals (iron, calcium, etc.) can bind with the thyroid hormone from the pill, in the intestinal area, preventing it from being well absorbed into the blood. Once our replacement dose is IN the blood, taking the supplements causes no problem.
Hair loss. Yes, it sounds familiar. I was shedding like my collies when I was hypo. We do not go bald. And, once we are at controlled normal levels of hormone, the hair loss becomes normal again. (We normally lose hair all the time anyway. It’s just that during times of stress, the body sheds the hair as "unessential".) Also, while ill, hair receives fewer nutrients from the body: the body provides nutrients for essential operations, and the hair (being extraneous) is left out…or severely restricted. Hair is one of the first things to show stress and illness, and one of the last parts of the body to recover.
I hope this helps,
in reply to: GDF welcomes our newest Facilitator James #1067345Great news!
in reply to: Graves Disease & ADD in Children #1067350Whether it would be "true" ADD, or the type of things we suffered from while our thyroid levels were out of balance, it would take a true professional to determine. The fact is that excessive levels of thyroid hormone mimic a lot of other disease conditions. It was thought, for example, that I had a panic disorder for a while prior to my diagnosis of Graves. And once my thyroid hormone levels were controlled and normalized I never had another panic attack (and it’s been 12 years and counting). The fact that the medication that was used prior to her treatment is no longer working well — if at all — should be some type of flag.
in reply to: Overwhelmed #1067368One of the blessings for me of having Graves is that I am grateful for every single moment of good health that I now have. No, it is not "perfect" health: I’m not that much of a Pollyanna. If I sit down and look at the negative things, I could make a list. I don’t. Because I am healthy again and there is a long list of positive things, things that are so very much better than when I was so dreadfully sick with too much thyroid hormone.
You are still in the thick of things. You haven’t quite come out the other end of the dark tunnel that is illness. But you will if you keep focussing on what you need to do to regain your health. There are steps you can take to regain your health. You can start exercising wisely, if your doctor has cleared you for it. DRAG yourself out if you’ve been cleared to exercise, and slowly start working at regaining strength. Walks are a wonderful way to clear your head of negative thoughts, and start regaining strength. Make sure you are not overdoing for your current level of health. In other words, prioritize and pace yourself.
Don’t let yourself fret about things over which you have no control. It’s pointless. You can either do something about an issue, or you cannot. Trust me when I tell you that it is a true blessing to know when there’s nothing you can do. It takes a load of pressure off. I said the Serenity Prayer a lot while I was recovering from Graves.
You CAN make sure you are getting really good nutrition. You CAN start an exercise program. You CAN prioritize the important "musts" in your life and discard any relatively unimportant "shoulds."
And, most importantly, you CAN laugh and enjoy things again. Sometimes we have to manufacture the laughter for ourselves: When I would start feeling myself going into the "pity pot", I would put a comedy on the TV. I had a small collection of movies that I watched over and over and over again, because they were guaranteed to make me laugh. And when I laughed, I always (even at the lowest points) felt better. Feeling "better" is so very important. If we only focus on what is worse than it used to be, we drag ourselves down a bit more. When we recognize we feel "better" it gives a lift to our spirits.
Jake used to end many of his posts to this board with this phrase: "I have Graves, and life is good." Yes, it is.
in reply to: A year later…good news #1067376I’m glad to hear that things are going so well for you.
Wouldn’t it be nice of those ‘horror story" sites could just go away. Being sick is bad enough without people trying to scare us to death. From what I’ve seen in the past twelve years, the majority — the VAST majority — of people do well with whatever treatment they choose, as long as they understand what they can reasonably expect from them.
Take care,
in reply to: My choice of treatment and a question about it #1068061Hi, Susan:
Just a quick point of definition: remission is defined as being able to go off the drugs for a minimum of one year while maintaining normal levels of thyroid hormone. So, three months off the drug is not a remission unfortunately.
in reply to: Confused !! Need answers #1067392This is a P.S. to my post above. You mentioned that your doctor didn’t lower your methimazole when you tested "normal" while on the drug. That is standard procedure. The goal of giving that medication is to interfere with just enough thyroid hormone production to keep you in the normal zone. So, seeing a normal thyroid reading, your doctor would have thought that the dose you were on was "just right." Obviously, since you subsequently went hypo on that dose, it was not just right OR something in your body changed. Our antibody levels do rise and fall for no well-understood reason. And what is the appropriate dose of antithyroid medication at one time, may not be the dose that is needed forever.
Just fyi.
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