[Bobbi]

in reply to: 22 Weeks Post-RAI, Finally Hypo and TED Onset #1061113

Hi, Gatorgirly:

Just a note or two of possible optimism. First off, when I went slightly hypo (I think it was more in the 5.5 range) for the first time, I got swelling in the soft tissue around my eyes. It was due to going hypo, I think, or maybe an allergic reaction to the cat, because while I did, eventually, develop moderate eye disease symptoms, it did not coincide with going hypo.

Second, after my eye disease went into the cold stage, and the symptoms mostly went away, I only have doubling of vision when I am really tired, OR when I am slightly hypo. The first time that happened, I panicked and went immediately to the opthamologist thinking that my eye disease was getting worse again. He told me to have my levels checked, that he thought I was probably mildly hypothyroid. Sure enough, he was correct, and the double vision went away. The lesson from that is that when we are even slightly hypo, our bodies are functioning less than optimally. If there is any eye muscle involvement in the disease, the symptoms will enhance until the thyroid levels are corrected.

Researchers in the past have speculated that "going hypo" and not getting started on T4 quickly enough is the reason for the eye disease developing. I don’t think they’ve proven their case at all, and part of the reason is the one I mentioned in the last paragraph. Now that we have soft-tissue imaging ability (ultra sound, MRIs, etc.) our doctors are finding that a very large percentage of us have "some" eye muscle changes. When we are hypo, there might be symptoms from these changes because the body isn’t quite up to par. It doesn’t mean, however, that going hypo has caused those eye muscle changes to occur. It is really difficult for scientific study to isolate enough factors here to be able to determine what is causing what.

I do hope all is well with you. Try to relax if you can. Getting "some" eye muscle changes doesn’t mean your eyes will go full wonky. Fingers are crossed here,

[Bobbi]

in reply to: What do you EAT? #1061107

You cannot control your thyroid function via the foods you eat. We have an autoimmune disease. Our immune system has created a rogue antibody that attacks the thyroid. The thyroid malfunction cannot be corrected with diet in our case.

When you have been hyperthyroid, your body has become depleted of nutrients typically. So you need to eat a well-balanced diet, with good nutritional value.

Typically the only "food" we’re told to avoid is kelp, and especially kelp supplements. This is while we have a thyroid still. The reason is that a kelp supplement has a high iodine content. This — while you still have a thyroid — can cause your thyroid function to go out of whack in UNPREDICTABLE ways. It can either be like throwing gasoline on a fire, or it can cause the thyroid function to depress. Again, it’s not a control valve, which is what we need.

Sometimes, before we go in for a specific test, the doctors will recommend a low-iodine diet for a few days. That is so our thyroids use up whatever iodine is there, BEFORE that test or procedure, allowing the test iodine to be able to enter the thyroid cells freely. It is necessary for a brief period of time and is not any type of permanent recommendation.

We do not need to eliminate iodine as some folks online suggest. First off, iodine is absolutely necessary for the production of thyroid hormone, which is absolutely essential for a healthy functioning body. And, for anyone who has removed their thyroid, it doesn’t matter, either, because the only place iodine is used in the body is in the thyroid. But under normal circumstances those of us with thyroids do need iodine in our diet. Pregnant women particularly need iodine in their diets. In those parts of the world where the diet is severely deficient in iodine, women are often seriously hypothyroid and babies are born with a severe form of mental retardation. So, ignore any online source that tells you to eliminate iodine.

If you have questions on this, please talk with your doctors.

[Bobbi]

in reply to: pregnancy after RAI questions #1061124

There are no treatments for the antibodies that do not suppress the entire immune system. That is why, since we can live healthy lives without a thyroid, our Graves treatments do not include such drastic measures. Some folks with autoimmune diseases DO have to suppress their antibody levels, but it puts them at risk for getting life-threatening infections. I also have no idea what problems this type of intervention might have on the baby in utero, either. I would suspect not good.

Also, according to my endocrinologist antibody levels fluctuate for no well-understood reason. It is why she checked my antibodies once but not at any other time. It was helpful to test for them when I was first being diagnosed, and had rampaging symptoms, apparently, but would do little good otherwise since I chose to quit the antithyroid med and have RAI done.

Worst case scenario with the pregnancy (with respect to the antibodies) is for them to cause the baby’s thyroid levels to go hyperthyroid. This is a temporary condition. The baby is not creating their own antithyroid antibodies. The mother’s anti-thyroid antibodies have simply passed through the umbilical cord, and affected the baby’s thyroid function termporarily. The antibodies die off, and the baby’s thyroid function returns to normal. This would be something to discuss with your pediatrician. I have not heard of it happening much, but I have heard that it happens occasionally.

The important thing for you is to have your blood levels of thyroid hormone checked periodically, to make sure that they remain normal. This is for your health, and for the best outcome of the pregnancy.

[Bobbi]

in reply to: pregnancy after RAI questions #1061122

The reason, smj78, that you might be considered a "high risk" pregnancy is typically ONLY because your thyroid levels have to be managed "manually." This manual management of thyroid levels during pregnancy would occur no matter what treatment option you had chosen. The female body, during a pregnancy, tends to suppress antibody action,which makes it less likely that the mother’s body will mount an antibody offense against the baby while in utero. So, when someone has an autoimmune disease, the antibody levels will lower, and if that person has Graves it would mean that she would need less of an antithyroid medication, and perhaps a different amount of replacement hormone (if the thyroid has been removed).

Lots of women have had normal pregnancies after having treatment for Graves. Kimberly explained how things need to be managed. But I do send you best wishes for any future pregnancy.

[Bobbi]

in reply to: The thyroid and gluten #1061149

Scientific knowledge begins with speculation: could it be that…….? This is followed by testing which is designed to eliminate all possible variables to allow the "could it be that?" to have a dominant role. Having speculation and the begining of testing does not mean that something IS real, only that people are wondering whether it might be real.

In the quotes used, the terminology is speculative. "It is believed that…" is not the same thing in meaning as "It is known that….." That’s the first thing.

I would submit my own sentence — equally true…. or not — "It is believed that Graves disease may predispose an individual to other autoimmune disorders such as as type I diabetes, celiac disease and RA." It has actually been shown statistically that people who develop one type of autoimmune problem (no matter which one) are indeed slightly more predisposed to developing a second one.

Celiac disease is very specific, with specific diagnostic tests required. It definitely has been proven that when someone does have celiac disease, going gluten free is essential. Whether going gluten free will help an individual with thyroid disease is still unproven.

There have been tens of thousands of Graves disease patients who have gotten well again without giving up gluten. So far, giving up gluten has not been shown to make any Graves disease patient well again.

[Bobbi]

in reply to: The thyroid and gluten #1061143

The reason that it doesn’t appear here is probably largely due to the fact that there are no studies which indicate the going gluten free makes any difference in thyroid diseases like Graves. We try to deal with what is proven and known, not what is speculative.

[Bobbi]

in reply to: Allergic reaction to Methimazole #1061548

No, not easy, but it’s a really good thing to do, Melissa. It will help you to "own" your decision, and will help you to feel like you’ve thought things through.

Also, keep in mind that a lot of what you read online is skewed to illness. With whatever medical intervention you can name, there have been some adverse consequences at some point in time. (You are now one of those posting about an adverse consequence of the ATDs, if you think about it.) And people who have had problems are likely to be posting more than the folks who got well again and put whatever experience it was behind them. I can tell you that here, with Graves, if you check the archives, you will see the same problems being discussed over and over , but the names of the folks posting change every four to six months or so. Once we get well, we tend not to spend a lot of time on these boards.

The bottom line is that all of our treatment options are reasonably safe — and much, much safer than remaining hyperthyroid.

I do wish you good luck, and a good outcome.

[Bobbi]

in reply to: New GD Sufferer. Feel better when? #1061239

How long it takes to feel well again typically depends upon how ill you were, and how long you were ill before being diagnosed. Damage occurs in the various body systems while we are hyperthyroid. The healing process does not even begin to start, though, until you are at controlled normal levels of hormone. My GP told me at the time that she felt that it would take about 9 months — on average — before people felt relatively normal again. I also think it helps if we can work with the process, getting appropriate nutrition, rest and exercise to help the body heal at its best rate. Just sitting back and waiting to feel good again seems to draw the process out.

Wishing you good days, and soon.

[Bobbi]

in reply to: Allergic reaction to Methimazole #1061546

Another perspective, perhaps, Melissa. We can live well without our thyroids. Thyroid cancer patients, who have had every last vestige of thyroid tissue removed, live healthy full lives on replacement hormone. We typically still have "some" thyroid left (although not always) because we do not get as big a dose of RAI, or we only get a sub-total thyroidectomy to preserve the parathyroid glands, etc. On the other hand, people cannot live at all without a liver. It may "stink", as you say, that the option you have chosen as your first choice isn’t working the way you had hoped, but the other options can work to have you feeling well again, without the added strain on the liver.

[Bobbi]

in reply to: TED, OD surgery: burnout phase? #1061307

TED does indeed get better on its own. But that does not mean that the effects of the changes to the eye muscles will revert to pre-disease normal. It will ease off the worst of things, but by how much it is very difficult to predict. If enough changes occur to the eye muscles during the course of the disease, we can be left with permanent changes to our appearance and our vision, even though things may have "improved" somewhat.

Obviously, this makes it very difficult to determine when OD and other surgeries should be performed, if they are being considered. In my case, they were never even considered, and that was despite the fact that my eyes protruded a bit, and I had intermittent (but frequent) double vision. I don’t look pre-disease normal, but the double vision went away (unless I am very tired), and there aren’t enough "cosmetic" changes to warrant having something as severe as OD. Every case is different.

I think the best thing to do is to listen to your own doctor. If you have doubts about it, get an appointment with another, equally well-qualified doctor to get a second opinion. It’s not perhaps perfect — it would be nice to be able to be absolutely sure the minute surgery might be warranted — but it’s the best system we’ve got.

[Bobbi]

in reply to: Pregnancy with Grave’s Disease #1061183

To add specific to Deblitz’ comments:

The "drug" you would need to take after RAI or surgery to remove the thyroid is thyroid hormone. It is chemically identical to the body’s own T4(thyroxin) except for the inert ingredients used to make it into pill form. Rarely, someone reacts to one of these inert ingredients (more often than not one of the dyes used to identify one dose of the pill from another), but other than that, this chemical has no side effect issues other than making us hyperthyroid if we take too large a dose, or hypothyroid if we take too low a dose. The body is designed to use this chemical, so it adds no other problematic issues.

The antithyroid drugs do have some adverse side effect issues, but if you are tolerating the drugs well, that would not be a consideration for you. It might create a problem for the baby, however, if the dose you need to be on to attain normal levels of hormone is too high. These drugs do cross the placental barrier and can, as a result, adversely affect the thyroid function in the developing baby. There is a balancing act required: if you take too little of the drug and remain hyperthyroid, the pregnancy itself could be jeapardized. There have been successful pregnancies (meaning full-term healthy babies) for women who are on these drugs, but since you have a choice here — albeit perhaps not one you would prefer making –you should understand the pros and cons and discuss carefully with your doctor whether YOUR required dose of medication presents potential problems for the baby.

[Bobbi]

in reply to: Insomia relief? #1061188

The first thing you should do, Mike, is go back to the endocrinologist (or your GP in a pinch) and have your thyroid levels checked. It’s the easiest way to rule out hyperthyroid levels of hormone, which could account for many of the symptoms you are describing. If those levels are still normal, then you need to look for another reason for the symptoms. But these symptoms do sound like some that we experience while hyperthyroid.

[Bobbi]

in reply to: Remission vs. Cured #1061233

Remission is defined as a "temporary cessation of symptoms." There is no current cure for autoimmune disorders. With Graves, we do occasionally, if infrequently, experience periods of time where we can go without treatment and have normal levels of thyroid hormone. That is remission. Such a period "must" be over a year to qualify as a real remission, and it can go on for several years. The numbers I have seen, and believe, suggest that 20-30% of us experience one remission; a much smaller percentage experiences more than one. Antibody levels can rise and fall for no well-understood reason, and when they are low, we can be asymptomatic.

That’s looking at the autoimmune aspect of things alone. If you look at the problem of hyperthyroidism, however, (and that is what makes us ill) there is more of a cure: the removal of the thyroid. If you remove enough of your thyroid, you cannot ever again be hyperthyroid unless you take too large a dose of replacement hormone.

[Bobbi]

in reply to: What is the possibility? #1061268

Hi, Marsha:

I know they "sound" scarey, but our treatment options are significantly safer — all of them — than remaining hyperthyroid. If you did not tolerate the meds the first time around, do try to be objective about the methods we have for eliminating our thyroid (RAI and surgery). They can make you well again. People live well without a thyroid. Not infrequently after both RAI and surgery, we have "some" of our thyroid tissue left, but thyroid cancer patients have to have every last vestige of thyroid tissue removed, so they have to undergo surgical removal AND go through massive doses of RAI. And if they eliminate the cancer, they live healthy lives. Our replacement hormone works well.

Wishing you well,

[Bobbi]

in reply to: Hi everyone I am new here #1061250

Since they are sending you to an orbital surgeon, and with some of your other symptoms, it sounds like the doctors are now treating you for thyroid eye disease (TED). TED is an autoimmune disease associated with Graves. When it occurs, our eye muscles are attacked (for want of a better word) by the antibodies, and they get bigger, and stiff and swollen. This pushes our eyes out (bulging eyes) and can also cause double vision. Pressure can develop on the optic nerve which sits back in among those muscles and can also limit our field of vision. Orbital surgery can remove some of the bone in the eye socket to make more room for the bigger, stiffer eye muscles, and can improve those vision issues, and save the optic nerve from pressure. Sometimes after the orbital surgery, if that is what they are planning, we develop double vision, which can be fixed by a much simpler surgery. Anyway, if you research thyroid eye disease — or thyroid associated opthamopathy (it’s more formal name) — you might get more information about what is going on.

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