[Bobbi]

in reply to: New to the board, New to Graves– #1063986

Hi, Leslie, and welcome to our Board.

First off, please be really, really careful of the research you do online. There’s a lot of misinformation online about medical issues. And there are lots and lots of us with Graves who have had babies, or who go on, after treatment, to have healthy babies. Thyroid imbalance can adversely impact on fertility issues, but with Graves treatments we regain control over the hormones, and get back to health. It is possible for someone with Graves to have infertility issues, but it is something they would likely have had without the Graves as well. Miscarriages are amazingly common, too, in the general population. When one of us miscarries, we want to blame something — and Graves is handy. But I know of no data that supports the idea that we have more miscarriages than someone without Graves. I hope this information cheers you a bit.

[Bobbi]

in reply to: child with Graves’ learning disability article #1064052

I think the publication you are talking about was the one written a number of years ago by one of our members — a special ed teacher. If it is still available, you can find it by going to the main NGDF website, and going to the menu item called "Publications." It is not about any type of permanent learning problem, if I remember correctly. So this may not be what you are talking about.

[Bobbi]

in reply to: Anyone else allergic to thyroid meds? #1064060

Taking iodine may not be a good idea — talk to your doctor first and foremost. Iodine is necessary for the production of thyroid hormone, so taking extra iodine has been known to be like throwing gasoline on flames. It is also given sometimes to saturate the thyroid prior to surgery. Perhaps this is the form Harpy is talking about but I do not know. The bottom line is that we here do not really know what is safe for you.

I did RAI. The studies, over decades, have demonstrated that it is safe in terms of the amount of radiation we are exposed to. What is involved is that you swallow a pill, or sometimes a small amount of clear liquid. In a few days, your throat becomes sore (caused by damage to thyroid cells). It’s kind of an "external" sore throat: it isn’t sore to swallow, but you feel soreness. Some folks require some pain meds for it; I did not. (And I’m not particularly stoic.) Then, about one week — give or take — after RAI, we become somewhat more hyper than normal. Thyroid cells not only make hormone, but they store it for future use. So when our thyroid cells are damaged by the RAI, they release their stored supplies. This extra hyperness lasts a few days to a week or so. That’s it.

There are pros and cons to all of the treatments, but what you need to understand is that being hyperthyroid is far and away more toxic to your body than any of our treatment options. I know that it is very, very difficult right now, being so hyper, but try to keep an objective mind when you are talking with your doctor about treatment options. Shirley’s suggestion of taking someone with you is a very good idea, because when we are hyper, we dont’ have the concentration needed to remember all the points, and a well person, sitting with you, will likely remember things you do not.

I do hope you get things squared away, and soon. And, a word of advice: you might check with your doctor about how much a visit would cost you. It could be that you can pay the extra, so that you do not have to wait until the insurance changes. Just a thought.

Wishing you well.

[Bobbi]

in reply to: endo reducing synthroid again #1064085

Eye puffiness can be caused by a lot of different things: allergies or illness or, yes, as a symptom of eye muscle changes. And there are probably other things as well. If the eye muscles are swelling a tad, they do push the eye forward a wee bit, which then makes the soft tissue around the eyes look like it is swelling. The thing is, soft tissue imaging techniques have demonstrated to our doctors that most of us with Graves get "some" eye muscle involvement. In one report I’ve read, the doctor writing it said it could be 100% of us. Now that hasn’t been proven completely, but lots of us do have minor eye muscle changes apparently. And getting "some" changes does not mean that we go on to get horrible eye disease. Most of us do NOT. Even getting moderate symptoms of the eye disease does not mean that it will progress to horrid. It’s a very unpredictable issue, so please (and I know this is very hard) try not to fret. Worry does no good, and it does do some bad (in adding stress, and giving us frown lines). If there’s nothing you can do about something (and in this case, there truly is nothing typically), then the best thing you can do for yourself is what I call "do a Scarlett." Scarlett was the character in Gone With The Wind who preferred to worry about things "tomorrow," which, in essence meant never in her case. I can’t quite pull off the never in situations like this, but I can do a pretty good "tomorrow." I pull my thoughts to something else and keep busy at it. It does help.

[Bobbi]

in reply to: DOWN #1064076

For what it’s worth, I had a slightly different method of "attack" on down days, Linda. I kept a couple of comedies handy on DVD or VHS. These were shows/movies that were guaranteed to make me laugh. When I would get really down, I would put one of them on. Laughing always made me feel better, and helped to put things into perspective. I must have watched "Jumping Jack Flash" and Cosby’s "By Himself" a dozen times or more, EACH. In fact I still use the technique: I had to have a tooth pulled this week, and I used it again when I started to feel sorry for myself.

I hope you’re feeling better soon.

[Bobbi]

in reply to: endo reducing synthroid again #1064083

Yes, Susan, it happened to me, too. Like you, I had to have my dose of synthroid reduced over time, until eventually I was completely off it …. for about three months. Like you, I was very worried about having to have RAI again. I began calling my thyroid "Arnold" after the Terminator character the actor of that name played, that came out of the truck fire (RAI) skeletal but still lethal. (You can see how long ago it was that I had my RAI.) Anyway, after being completely off synthroid for a short while, we had to start adding it back in, little by little.

It is obviously not optimal to have this happen, but at least your doctor is paying attention, and tending to your needs.

I hope you are feeling totally well again soon.

[Bobbi]

in reply to: I have another ?–re: exercise #1064090

Exercise can be a problem from more than one perspective. Yes, th eheart works too fast, and exercise could put added stress on your already stressed heart. But also, while we are hyperthyroid, we LOSE muscle mass, and the muscles themselves do not function normally. You need to be very careful, and listen to your body. You might not think you are doing too much, but if you are feeling problems, pay attention to them, and back the exercise down a notch or two. When you have stabilized AT normal levels of hormone, you will find that you can work back up to what might be normal levels of exercise for you, but you wil have to work up to them. When I first started exercising again, I could only use small paperback books as "weights" for my arms at first. I gradually got up to real weights, but my muscle loss was such that I couldn’t expect the same weight as I might have used 8 months before. So, listen to your body.

[Bobbi]

in reply to: Any feed back on NMD’s? #1064117

Perhaps, somero, it would help you to understand a bit about the medication you are taking. The thyroid not only makes thyroid hormone, but it also stores it for future use. The medication you are on acts as a chemical block to the production of NEW thyroid hormone, but it does nothing to those stored supplies. So, until those supplies are used up (and it can take some time), you will not feel any difference. In addition, you and your doctor have to find what I call the "Goldilocks" dose of the medication. You have to be taking just enough to make you "Euthroid" (normal levels of thyroid hormone). If you are taking too little of it, you will remain hyper; if you are taking too much of it, you will go hypo. Finding out what is the proper dose can take weeks.

There are absolutely no quick fixes to Graves disease. There is no magic pill that works instantly to make us feel normal again. Getting back to normal levels of thyroid hormone allows you body to START to heal, and that healing process takes time as well.

The thing you should keep in mind, though, is that our standard treatment options DO work to bring us back to health. They’ve been scientifically demonstrated to control thyroid hormone levels, so that our bodies can heal, and we can return to our normal activities. Be very careful of what you read on the web that may indicate otherwise. Some folks get their jollies by scaring people half to death. And, unfortunately, some people get treatment too late to help them avoid longer term complications. But the vast majority of us do regain our health, and go back to our normal lives.

That said, if you are itching from the medication — if you started itching after you started taking the meds, your doctor does need to know about that sooner, rather than later. There is an alternative antithyroid med (ATD), and there are other options for you to regain your health if you are allergic to the one you were put on.

I hope you are feeling much better, and soon.

[Bobbi]

in reply to: Low Energy Level #1064128

The best thing for you to do right now might be to keep a log of activities to help you to figure out if you are really overdoing things, or if there is some cyclical pattern of energy collapse going on. You might also include foods eaten. The thing is, not every symptom that we develop over time is necessarily related to thyroid. It’s helpful if it IS related to thyroid, but if it is not, and we continue to focus on thyroid as the culprit, we may endure problems like these for longer than necessary.

[Bobbi]

in reply to: Recurring eye infections or Styes #1064133

I think it is important for you to go back to the free clinic and get the doc or nurse practitioner to look at the eye again. I have no knowledge about whether styes are best treated with antibiotics — but having an eye that is swollen shut and sore is obviously abnormal, and needs to be seen by someone who DOES know what they’re doing.

[Bobbi]

in reply to: excessive hunger #1064180

Think of hyperthyroidism as a Hurricane Earl in your body. Getting to normal levels of hormone is like having the winds subside. Are things immediately normal after a hurricane? Absolutely not. There is damage that needs to be fixed. And you cannot start fixing the damage while the hurricane force winds are still raging — you have to wait until they’re gone. It’s an analogy that can help you to understand why you don’t feel "normal" when you hit normal levels of hormone at first.

[Bobbi]

in reply to: New on here, parent of child with gd #1064247

Just to emphasize something, ettena. While you cannot get rid of the antibody component, the treatments available to us DO work to return us to health. While the thyroid is a very important gland in the body, many of us live well without a thyroid. Many others of us live well on the medication that interferes with the thyroid’s production of thyroid hormone. The important thing is regaining control over thyroid function, either via medication or thyroid removal. Both options can give us back our health.

[Bobbi]

in reply to: what part of graves do we keep? #1064153

Hi, Ruby:

To be clear — Graves is caused by an antibody to THYROID cells –or a specific part of a thyroid cell, if you want to get technical. There are questions about why some of us get the eye disease, and the pretibial myxedema, as well. Is it another antibody? Or, in some people is the tissue of the eye muscles, and the skin of the leg "close" enough to the thyroid cell tissue that the same antibodies work to damage those cells there as well? The answer goes back and forth. Some studies show one thing, while others contradict. One of the major changes since I was diagnosed was that Graves eye disease is now known to doctors as THYROID eye disease. I asked my eye surgeon why this change had taken place, and was told that since they were finding the eye disease in patients who had never had hyperthyroidism, but who had some other type of thyroid malfunction, they decided it was more appropriate to call it "thyroid" eye disease.

Anyway, think of antibodies as being tissue specific — or organ specific, since that was your question. It is like a key which only works in one lock: the key is made to work one lock, not all locks. That is more or less how antibodies function, as well. Thyroid antibodies do not attack joint tissues, digestive tracts, etc. They attack thyroid tissue. (And, possibly, to confuse things, they may attack the skin on the shins and the eye muscles, too, but we’re not sure of that. We just know that the eye disease and the shin problems occur together, in folks who have Graves, as well.)

What makes us SICK, however, is hyperthyroidism, caused by the thyroid antibody. As long as the hyperthyroidism is under control, we regain our health.

Does this answer the questions you had? If not, ask away, and we’ll try again to answer.

[Bobbi]

in reply to: Second round of RAI in the morning. #1064187

It’s a strange disease — I went hypo shortly after RAI, only to go back into the normal zone briefly, before heading back into hypo territory. I kept getting hyper on smaller and smaller doses of the replacement hormone, until my endo took me completely off. That didn’t last long, and I gradually needed more replacement over time.

It helped that all I had to do was tinker with my dose of replacement — I didn’t have to redo RAI. Ski did, however, and she may add her thoughts to you at some point in time.

Keep your chin up, and we’ll hold you in our (positive) thoughts!

[Bobbi]

in reply to: What if RAI??!! #1064226

It is my understanding from readings I did when I first got diagnosed with GD, that the antibody attack will eventually kill off enough thyroid cells that we should expect to go hypothyroid, even if we do not do surgery or RAI. Obviously, someone like James, who has had a reasonably long remission could expect to avoid that for (at least) a long time.

As one who "cut to the chase" and has been on replacement hormone for at least 12 years, I can tell you that having to take the replacement hormone is a decent option. It works well, and gives us back our health. The only side effect issues from it are if you are taking too much (hyperthyroid symptoms) or too little (hypothyroid symptoms). Getting the "Goldilocks" dose is important. But other than that, we live healthy lives on it.

[Author]

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