[Bobbi]

in reply to: T4 OK, but T3 Not behaving #1175402

Free vs not free…. Thyroid hormone can be tied to other molecules in the blood — or it can be untied, i.e. “free.” When the hormone molecule is bound up with something else (like iron, for example), it is not used in cell metabolism. Only the free hormone gets used in cell metabolism. At least that is my “amateur” take on the readings that I have done on the subject. So, knowing total T3 levels is not quite as helpful as knowing Free T3 levels, because that is the hormone available for the cells to actually use.

[Bobbi]

in reply to: Using both Methimazol AND Levothroid to manage Grave’s? #1175413

I think it helps to understand that antibody levels rise and fall for no well-understood reason. And when these levels change, the amount of ATD we need changes. (If we do not have a thyroid any longer, the issue is moot.) The treatment plans need to keep us at a constant, CONTROLLED level of normal thyroid hormone. If tinkering with T4 makes it easier, why not? But I don’t understand why it would make it easier. If anyone’s doctor has explained this satisfactorily, I would be very interested in hearing it.

[Bobbi]

in reply to: T4 OK, but T3 Not behaving #1175399

Think about it: at least from my understanding of what you wrote, your T3 levels are consistently higher than they should be RELATIVE to T4. So, why in the world would you want to switch replacement products to add more T3? I’m not understanding your question at all perhaps.

[Bobbi]

in reply to: 18 year old college student #1175132

Hi, Nikabellini, and welcome to our board.
I realize that you are sick right now, and that it’s hard. But we DO get well again. Some folks stay on the antithyroid (ATD) meds, others of us remove our thyroids. We have a disease that can be well-controlled by one means or another. So please try to keep your chin up and expect to feel fine again.

[Bobbi]

in reply to: T4 OK, but T3 Not behaving #1175397

No idea. And, since the T3 is the form of hormone used in the body’s cells (T4 must be converted to T3), having elevated levels of T3 isn’t good.

[Bobbi]

in reply to: methimazole. side effects? #1175395

I hear you, Stacy. I feel the same way.

The side effects from the methimazole are relatively infrequent/i.e. rare. I think — but don’t hold me strictly to this number — it is something like less than 5% of people show up with any significant side effects. I would suggest that you talk with your pharmacist: he/she would be the best source of information, and there’s probably a print-out you could take home with you.

Being tired goes hand in hand with both hyperthyroidism and the hypothyroid state. But the dose that you need of the methmimazole has to be calibrated to your needs specifically, so it is possible for it to make you hypo. I could feel a difference in the type of fatigue I had while hyper or hypo. If I exercised a bit while hypo, it energized me. (I’m talking a quiet walk, or something simple, not kick boxing or spinning.) If I tried even a quiet walk while hyper, it only made me more tired. Also, if the medication is slowing your body down, as it is supposed to, you could be feeling just how tired hyper was making you. Without the added “jazz” of thyroid hormone, we do feel fatigue until we readjust to “normal” again.

Since your kids are ill, make sure to wash your hands, wash your hands. It isn’t just the medication that you are on possibly messing with your immune system, but you have been ILL yourself. Your resistance might be lower because of the wear the hyperthyroid state has put on your body.

[Bobbi]

in reply to: * White Blood Cells & Methimazole * #1175327

Actually, I think it is a mistake to tie agranulocytosis with a sore throat. That is ONE of the indicators — a severe sore throat that does not go away — that doctors tell us to watch for. But the issue is that an INFECTION takes hold and there is insufficient white cell count (plus other immune thingies perhaps) to fight the infection.

[Bobbi]

in reply to: Diet & Graves Disease #1175359

No. Diet does not cause Graves disease. You also cannot affect the course of your Graves disease with diet.

[Bobbi]

in reply to: Does RAI effect parathyroids? #1170718

Hi, Karen: No, RAI does not destroy the parathyroids. Nor does it damage them. This is one of the benefits of RAI over surgery. It seems to me, too, that it is an indicator of how benign, in some respects, the RAI is. If it doesn’t damage the organ attached to the thyroid, but destroys the thyroid, it’s a pretty specific “tool” for our hyperthyroidism.

As for the Vitamin D, you should talk with your doctor about what to do. Mine recently (well, a couple of years ago) put me on a daily dose of it — 2000 whatever units. But Vitamin D is one of those vitamins that gets stored in fat cells, and can become toxic at the wrong levels, so I would suggest getting your doctor to weigh in on what to do and not try dosing yourself.

[Bobbi]

in reply to: * White Blood Cells & Methimazole * #1175324

The low white cell count is one of the more hazardous KNOWN side effects of the antithyroid drugs. White cells are a part of the immune system’s response to infection, and if the drug suppresses the count sufficiently, you could become very sick, even deathly ill, with an infection. Your body might not be able to fight it off. I realize you’ve placed your hopes in the single bucket of remission, but, quite frankly, the other treatments work without this risk to give us back our health. It’s one thing if the drugs work well for you. But since they don’t, you would be wise to explore one of the other choices.

[Bobbi]

in reply to: Graves’ and night sweats? #1175331

I had them when I was hyperthyroid, and then they went away until I went into menopause about four years laters. It helped to keep an ice pack next to the bed. When the “power surge” occurred, I would put the ice pack on my head, and it would moderate things. We lose 75% of our body heat through our heads, so I figured icing things up might help, and it did.

[Bobbi]

in reply to: RAI and cancer risk #1175317

I think the main thing to do is find out why your endo thinks RAI would be safer for you than surgery. If it’s just a general comment about RAI having fewer complicating issues, etc. that’s not necessarily a sufficient reason for you to avoid pursuing surgery as an option. But if your doctor points out medical issues that are specific to YOU that might make surgery a less desireable option, then you need to weight those very carefully. You need to have a very good thyroid surgeon on board, however. This is someone who does lots of thyroidectomies with low complication results. As an option, surgery is somewhat more risky than RAI, IN GENERAL.

[Bobbi]

in reply to: double vision #1175195

This might be a sign, Jake, of developing TED. If that is the case, you might want to see your doctor and revisit the decision for RAI. The current theory is that RAI can aggravate — specifically make temporarily worse — any TED. Studies have shown that if you take a concurrent dose of prednisone with the RAI that TED is not aggravated. So when TED is present in any significant degree, our doctors either suggest surgery (which is not shown to aggravate TED) or the prednisone, if it is thought the person can tolerate it. So, if you have doubling of your vision, you need to get it checked by an opthamologist, in addition to talking with your endo.

I do know how awful it is to have double vision. I took to wearing an eye patch at times. The patch works to eliminate the double vision, but it also eliminates depth perception, so it makes driving a bit more hazardous. Of course, driving with doubling is hazardous as well, so I stayed off the roads for a long period of time. Or drove back roads with little traffic. And be sure, if you do this, to alternate the patched eye so that you don’t weaken one.

[Bobbi]

in reply to: 2 weeks till atomic cocktail (or pill) #1175192

Making plans to spend a few days away from the kids (or them away from you — like with relatives) might be appropriate. In general, the precautions depend upon the dose of RAI you get: the higher the dose, the more precautions, the longer the period away. Typically, the first two days are the most important: the first 48 hours or so after RAI, you will be shedding any of the radiation that did not make it into your thyroid. We lose the excess through saliva, sweat and urine because RAI is very water soluble. Also, the smaller the children or pets, the more distance you need to keep. (We have a tendency to hold small children/pets and that puts them closer to the thyroid itself.) Even with doses on the larger size (but not as large, say as the dose folks with thyroid cancer get), after a week (the half life of RAI is 8.1 days), it is typically considered safe for us to be around others, because only half the dose is left in the thyroid itself.

Keep in mind that the precautions are designed to prevent you from exposing someone else to UNNECESSARY radiation. None of the literature show that the RAI harms us longterm and we get the biggest dose. But radiation is cumulative over our lifespan, and it has a bigger impact on small and young, so avoiding unnecessary exposure to others is prudent.

I do wish you good luck with your treatment.

[Bobbi]

in reply to: New problems with eyes #1175166

An immediate solution, Sasha, at least for your work issues, would be to use a patch on one of your eyes. Be careful to alternate the patched eye, to protect them from weakening. But with one eye patched, you will not have double vision. With one eye patched you will lose depth perception, so be very careful. I scraped the side of my car badly while practicing driving (in my driveway) with an eye patched.

I cannot give you any information about exercises for the eyes. But perhaps someone else here would know.

Basically, though, when we have TED, the muscles become stiff and enlarged, and no longer work together well to provide single vision. There is a period of time when the condition worsens. We call that here the “hot” phase of the disease, and it can last anywhere from 18 months to 3 years on average. During this time our opthamologists do little or nothing to intervene because the treatments at their disposal have potentially huge adverse side effects. That said, you should be monitored rather regularly while the worsening is going on because if your vision itself gets threatened the doctors do intervene.

After the hot phase ends, there is a period of time when the symptoms improve over time. Your eye issues may never go back to their normal condition, pre-Graves, pre-TED, but they can improve. This is another reason our eye doctors prefer to wait, if possible, before any surgical intervention is tried. If surgeries happen too soon, they might over-correct for the ultimate eye condition that remains, causing yet another problem, not a solution.

Sometimes it is helpful to elevate the head of the bed (use boards or bricks under the head of the bed) slightly. Sleeping on a slight slant can help prevent morning swelling of the eye muscles. But don’t just raise your head off the bed with pillows: that could throw your back out.

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