[Bobbi]

in reply to: Just diagnosed with Graves. #1062703

There are a couple of reasons to avoid strenuous exercise while hyperthyroid. To me the most important reason has to do with the heart. The heart beats too fast when we have too much thyroid hormone. And it is less effective at oxygenating the blood and pushing the blood through for some reason. So stressing it, asking it to work harder than normal, puts even a greater strain on things.

More importantly, however, is the fact that excess levels of thyroid hormone can cause aberrant heart RHYTHMS. Arrythmias are unpredictable, and if they occur, they are life threatening.

Once you get your levels controlled back in the normal zone, by whatever treatment method you and your doctor feel is best, the heart issues will not be predominant. But while you are still very hyperthyroid, you need to take things easy, to protect your heart.

Try to keep in mind that while "having" Graves may be a life-long, chronic issue for all of us, poor health is typically temporary. Our treatment options do work, and afterwards, most of us regain our health.

Wishing you good health and soon,

[Bobbi]

in reply to: Almost remission #1062694

Just a comment about what constitutes remission: according to the experts who have given us advice, remission means that we can maintain normal levels of thyroid hormone while off the meds for a YEAR or more. Many people can go off the meds for briefer periods of time. But technically, it isn’t a real remission unless it continues for over a year.

[Bobbi]

in reply to: TED and reading…. #1062705

We do tend to blink less while looking at the computer apparently. And the glare can be difficult to manage. There are ways to adjust the brightness, contrast, and also to bring up a larger font. I am not tech savvie enough to do any of those things, but someone from the Geek Squad, or other more computer literate person could help you.

I used to put gauze over one of the lens on my glasses. That way, I was seeing single vision regardless of the doubling problem. I love to read, for fun, and that helped to make it a bit easier. I also used a patch — pirate style– when needed. But for long sessions of reading, the blocked glasses lens worked the best for me.

[Bobbi]

in reply to: Hyperthyroidism: natural supplements or RI? #1063548

Michel, you have run up against a "folk medicine" commentary somewhere, and it could put your husband in danger. He cannot possibly eat enough kale, cabbage, etc. to have any measurable impact on his thyroid hormone levels. Yes, they contain a substance called goitrogens, but only in microscopic amounts. As a result, there is NO good research that says eating them does anything beneficial other than providing nutrients that we need. By all means add them to the diet — just don’t expect them to control thyroid hormone levels in the normal zone.

Switching from PTU to Methimazole might, might make no difference whatsoever, unless your husband hasn’t been compliant taking his PTU when he should. It is difficult to take PTU, I think. I was on it, and I had to space my doses out every eight hours, rigidly, in order to get the right control over my thyroid hormone levels. If I spaced things out longer, there would be spikes of too much hormone. The methimazole only has to be taken once a day, typically. So that can be a help.

Both drugs interfere with the ability of thyroid cells to make hormone. PTU also works to suppress the transformation of T4 into T3 (the thyroid hormone form used by cells), so it can be a bit more help than methimazole in some cases.

Those hormone levels, though, have to be CONTROLLED. If the antithyroid drugs aren’t working properly (and they did not in my own case), then the thyroid has to be removed. I know it "sounds" drastic. But if the thyroid is making your husband ill — and, with Graves, it is doing that — then removing it will put him back on a track to recovering his health over time. Keep in mind that tens of thousands of people have had their thyroid removed, and have lived healthy lives. We can, and do, live well without our thyroids.

[Bobbi]

in reply to: Still Grave’s even after Thyroidectomy & RAI #1062725

I am not sure I understand your questions completely, but I will try to answer at least some of them.

When someone has an autoimmune disease like graves, the antibodies are, typically permanent. That said, antibody levels do rise and fall for no well-understood reason. That is why someone with rheumatoid arthritis, for instance, can have extended periods of time that are relatively pain free, and then have a surge of symptoms for months on end. For us, with Graves, if the thyroid is removed, as yours has been, fluctuating antibody levels are, essentially "unemployed." Antibodies are specific to a set of proteins (a tissue in the body), and if their target tissues are no longer there, they cannot cause a problem. In our case, that means they no longer have any impact on thyroid hormone levels. So using the antibody levels as a guide is probably not useful at all to you now that you have removed your thyroid.

Replacement hormone IS thyroid hormone. It is chemically identical to the T4 (thyroxin) that your thyroid used to produce. So, if you are taking too much of it, you will have a suppressed TSH (be hyperthyroid). If you are taking too little of it you will be hypothyroid. And it has nothing to do with antibody levels any longer. It is controlled by your dose, and whether or not there are other medications you are taking, or foods you are eating, that would interfere with the ability of your body to absorb the chemical. Or, conversely, enhance the absorption of the chemical. Some medications do indeed affect absorption one way or the other. If it is a medication we need, constantly, then the blood tests will show a need to alter our dose of replacement hormone. The key is, typically, to be consistent in taking the other medication. If we take it at the same time every day in relation to our replacement hormone, then whatever impact it has will be consistant, and we’ll be able to adjust our dose of replacement into the proper levels. Problems typically arise when we are not consistent, and then there can be fluctuating levels of thyroid hormone in our bodies, which isn’t good for us.

[Bobbi]

in reply to: methimazole for ever? #1062719

None of us here are going to be able to explain your doctor’s reasoning — that needs to be done by the doctor. And, more importantly, none of us here is qualified to contradict your doctor if, indeed, your doctor does have medically sound reasons for suggesting that you remove your thyroid. We’re just patients like you.

If you are frustrated with your doctor’s advice, it might help to seek out a different doctor and get a second medically sound opinion.

Wishing you a good day.

[Bobbi]

in reply to: Tapizole and Flu #1062764

I don’t know that tapazole lowers the wbc count all the time, or in every patient on it. It can: That is one of the known side effect issues. But whether or not that is what is going on with you is still unknown.

Regardless, if you are coming down with every atmospheric virus/bacteria around this year, you should talk with your doctor about what is going on, and enlist his/her help in finding out how to stop it. A blood test could show whether or not your white cell count was low, or whether you are anemic, or some of the other issues that can cause us to get sick more frequently.

[Bobbi]

in reply to: EYELID SURGERY POST OP #1062808

Yes, Shirley, I had the TED, too. But only a "middling" case of it. Once I got into the cold phase of things, my vision went back to (mostly) normal, and I never had to have surgeries. Or never considered surgeries necessary. My eyelids shut, for one, which makes a huge difference. I hope all is going well.

[Bobbi]

in reply to: Thyroid levels suddenly increasing after being stable #1062770

I think that any decent GP or internist can prescribe our meds. I tend to "only" trust my endocrinologist. But when I am at my summer home, and only have the doctor at an Urgent Care clinic to make recommendations, I have found that his recommendations mirror those of my endo. I’m not sure that I would have felt that way initially, but I certainly have noticed that they can interpret the lab work and make appropriate recommendations at least "some" of the time. ; )

[Bobbi]

in reply to: I am new #1062774

On the Type A issues — many of us here are like that, including me. One of the positive things to come out of having this disease for me, though, was finding out that when I pared down, my friends and family didn’t particularly notice. Well, they probably noticed, but the fact that I was not quite as much a frazzled cartoon character was appreciated. ! Seriously, we do not need to do all the things we "think" we need to do. Some things are just extras, not necessary. So my rule of thumb — which I’ll pass on to you to think about — was to think about my best friend. If she felt the way I felt, would I ask her to do…X? If the answer was "no" then I knew I couldn’t ask it of myself. Treat yourself as your own best friend for a while.

It isn’t just clinic doctors that botch our diagnosis, either. I had a long-standing GP who had me convinced I was a hypochondriac when the Graves got bad. Our symptoms are so generalized for a while that a lot of doctors don’t connect the dots. Knowing that you have Graves, those clinic docs may be able to watch your eyes for you. But if you can budget a way to get to an opthamologist for a base line exam, it might set your mind at ease a bit. The opthamologists do not do ANYTHING typically unless they feel our optic nerves are getting pinched or are close to being pinched because the remedies available to them have such serious side effect issues (prednisone, radiation, surgery).

Wishing you well…..

[Bobbi]

in reply to: Just had RAI #1062783

All the methimazole does is to act as a chemical block to the production of thyroid hormone. Removing it does indeed cause our levels to rise dramatically.

As to thyroid storm after RAI. Not typically. About one week after RAI, give or take some days, the dying thyroid cells release all of their stored supplies of hormone into the body all at once. If someone hasn’t been alerted to this issue (we call it "dumping" here on this board), they can erroneously conclude that they’re experiencing storm. But in true storm, there is no shut-off switch: the thyroid cells continue to pour out huge quantities of hormone, and only emergency medical intervention can stop it. With dumping, on the other hand, those cells are not making NEW hormone to dump, they are only releasing hormone that has already been made. So there is an end limit, without medical intervention.

I hope you are feeling much better soon.

[Bobbi]

in reply to: EYELID SURGERY POST OP #1062802

Wishing you a speedy recovery, Shirley. I hope it gives you the results you want.

[Bobbi]

in reply to: Depression after being stabilized #1062814

Hi, Megan:

Having wonky thyroid levels can indeed cause depression. That doesn’t mean that is what is going on with you, but it could be. I would strongly recommend that instead of a "therapist" though, that you have your mother find you a really good psychiatrist who knows about anti-depressant drugs. Regular doctors do prescribe them, but in some cases, some drug combinations work better than others, and the psychiatrist is a medically trained doctor who specializes in things like this. A member of our family who suffered from depression finally switched to a psychiatrist, and there was a big difference in the quality of drug care that she received.

I do wish you good luck in figuring out what is going on, and in feeling better soon.

[Bobbi]

in reply to: Celiac disease common with graves? #1062853

Just one word of caution. I don’t think it is appropriate to think of celiac disease as "COMMON" with Graves. It is not. It is not one of the listed (and numerous) symptoms. It is not in any of my books. Therefore "common" isn’t the right word. Is it possible for someone with Graves to get celiac disease? No doubt. But that’s different than thinking of it as a common side issue, like TED is. Celiac disease is autoimmune, and it is known that if someone gets one autoimmune disease they are slightly more likely than another person to get a second one. But not hugely more likely. The data I’ve seen is in the low percentages, not high ones.

I know that one of the symptoms of hyperthyroidism is multiple bowel movements a day. But that is not "celiac" disease. Why" Because for the majority of us, it clears up once thyroid hormone levels are controlled back in the normal zone whether or not we stopped gluten products. With true sufferers of celiac disease giving up gluten would be critically necessary.

[Bobbi]

in reply to: Living with both Graves and Hashi. #1063646

Hi, Diane:

There is a well-respected eye clinic in Miami, FL, called Bascom Palmer. One of the earliest members of the board, Jake, used to drive down from Melbourne to see doctors and have surgeries at BP. There are specialists on staff who have experience with TED.

[Author]

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