[Bobbi]

in reply to: Men with Hyperthyroidism and Clubbed Fingers #1065777

There is a condition called "thyroid acropachy" in which clubbing occurs in the fingers. You can pull up a description of it online, from Google, if you want. It would be up to a doctor, though, to provide that diagnosis, because I have no idea whether or not clubbing can occur for other reasons.

[Bobbi]

in reply to: EYE LUBRIDANT, EYE DROPS #1065779

I don’t think writing a prescription for over-the-counter medications works in terms of getting insurance to pick up the tab. And, your opthamologist would be the person who would know whether or not there is a prescription medication that might prove helpful. But if your insurance is like mine, there is a co-pay, and there probably wouldn’t be a whole lot of savings.

Does it get better? Sometimes, yes. Mine, however, goes in phases: sometimes I don’t have to use the drops much, but other times (like lately) the eyes become very dry again, and I’m using the drops more. It is cheaper to use the ones that are "preservative free in the eye" — which i consider to be a whole lot of hokum marketing. They’re either preservative free, or they’re not. But before you use that type, you might talk with the opthamologist about what that phrase means, and whether or not it is a good idea for YOU to be using a different type of drop.

I guess, though, when push comes to shove, you really must use the kind of drops you need, and in the amount you need them, to protect your corneas from damage. Sight is precious and to risk it for a few dollars of savings may not be wise.

[Bobbi]

in reply to: ~Follow up to my insurance mess~ #1065801

Well,I don’t understand why they would be dragging their tails about this whole thing unless it is going to cost them money to partially pay for the COBRA. I don’t think that is how COBRA works, though, so I don’t know. Since you have an attorney, you might ask him/her if there is any plausible reason for a company to be so reluctant to do the right thing.

[Bobbi]

in reply to: ~Follow up to my insurance mess~ #1065796

My husband is a retired medical insurance exec and has offered the following info which may not work, but…. Whoever administered your former health insurance plan is the individual responsible for working with you about COBRA. Sometimes employers farm this out (privatize it) to a "third party administrator." Sometimes this is handled "inhouse" by an HR/Personnel employee. If you have tried this, I apologize for missing that info.

Another tactic if you seem to have run out of options, is to try contacting a locally available newspaper’s "Action Line."
The adverse publicity potential that Action Lines bring to bear, often bring about resolution to problems like this.

[Bobbi]

in reply to: Question about GD #1065809

If you were put on methimazole, it was because a blood test showed that your thyroid levels were too high. Diet pills don’t do this. The majority of times when people have thyroid levels that are too high, it is because of Graves. There are a couple of other reasons for excessive thyroid levels, but Graves usually is the culprit. But it doesn’t matter. Whatever the reason, getting thyroid levels back to normal is extremely important (it can lead to heart damage) and we get put on an antithyroid drug (ATD) like methimazole.

The ATDs act as a chemical block to the production of thyroid hormone. You need to be on just the right dose of it — a "Goldilocks" dose, if you will: not too much, and not too little. If you take too much, you will become hypothyroid. If you take too little, you will remain hyperthyroid. So you need to find the dose that leaves your thyroid levels in the normal zone. So it is extremely important, when you are prescribed these pills, that you take them as directed. If you stop them temporarily, or lower the dose on your own sometimes, your doctor will not be able to find the right dose for you. When you see your doctor, you do need to tell him/her that you stopped, and for how many days, etc., so that he has a better idea of what dose you should be on. It might be the dose you are on now, but itmight be different.

Can the pills make you feel bad? They typically are tolerated pretty well, but as with any drug therapy, some people have adverse side effects from them. The problem might also be, however, that by controlling your thyroid levels they are eliminating a "buzz" that you had while hyperthyroid AND while taking diet pills (which tend to jazz us up, as well). I hated that buzz, but some folks find it makes them feel like they are energized. You should try to objectively describe how the pills make you feel, so that you can discuss it with your doctor. There is another ATD that can be prescribed if your doctor thinks that your problems with methimazole are side effect related. But it is VERY important that you treat hyperthyroidism.

[Bobbi]

in reply to: Newly Diagnosed GD — Sad and Scared #1065863

Yoga may work for some, at some point in their progress back towards health. But yoga requires muscle strength and many of us have lost it. Adaptations have to be made.

[Bobbi]

in reply to: Pregnancy after spouse being treated with iodine treatment #1065828

Basically, the issue must be that nobody knows. There are two reasons that women are told to wait at least six months. One of those reasons is to allow for time AT normal levels of hormone, for the woman’s body to heal after being hyperthyroid. Pregnancy is challenge enough without imposing it on an ill body. But that, obviously, does not apply to men since they do not carry the babies.

The second reason is so that a few of the more mature eggs will be sloughed off before attempting pregnancy. The theory is that the more mature the egg, the more it is possible for the radiation to damage it. But, sperm are very short lived, and are made all the time.

Since no doctor can give you a definitive answer, I would suggest using your own judgment. Waiting a month or two might be unnecessary, but if it would ease your minds about things it would be prudent.

[Bobbi]

in reply to: Newly Diagnosed GD — Sad and Scared #1065861

One thing I did before the doctor told me that it was OK to exercise, was to do gentle stretching exercises. I know this seems like very little, but it was enough activity to keep my muscles limber, without straining them at a time when they were vulnerable to injury.

[Bobbi]

in reply to: Graves neurology #1065846

OK — you have been or are hyperthyroid. When I was hyperthyroid, demanding a diagnosis, the test that did it wasn’t an antibody test. I know Kimberly mentioned the TSI. In my case — and in lots of others — we were given a thyroid uptake and scan. With this procedure, you take a measured quantity of a minor radioactive isotope of iodine (not the treatment form), and then go sit with your throat in front of a wee geiger counter either a few hours or one day later. The only place in the body iodine goes is the thyroid. So, knowing how much of the iodine isotope you were given, they can measure the amount that made its way into the thyroid. Then, they do a scan, taking images of WHERE the radioactive substance went in the thyroid. This test cannot be done on a pregnant woman, most likely. But from the images the doctor can see how the radioactive iodine spread in the thyroid. Sometimes the iodine comes in clumps, with large parts of the thyroid showing that it is inactive. With Graves, the iodine will be everywhere — all of the thyroid being over-active, not just clumps of it.

While I would vehemently argue with any doctor that indicated someone was only "slightly" hyperthyroid (can someone be only "slightly" pregnant???), I think there were so many different issues going on that the doctor believed something else had to be at work. This, actually, is really important. Very often, we Graves patients will go to our doctors with something wrong, and our blood levels will be tested, and the words "It’s not your thyroid," will emerge from the doctors’ mouths. Those words are most often a sign that the doctor has figured out what ISN"T going on, but has ceased to try to figure out what IS going on. We do get other illnesses, even if we have Graves. So having a doctor that recognizes one problem, but goes on to try to figure out if there is something more at work, might be helpful.

Yes, it is thought that the antibodies we develop when we have Graves, attach themselves to the TSH receptor in thyroid cells and mimic the action of actual TSH. So the cells think that they are being called upon to create more hormone. The real TSH is being blocked from the receptors. That is one current theory. But what level of these antibodies is required to make someone ill is something I have no knowledge of. A friend of mine — a research MD in fertility and immunological issues — told me once, long ago, that she had found a percentage of the patients who came to her had these antibodies, but their thyroids still performed within normal range. When it comes to the antibodies, there are still lots of unknown factors.

Tremors was one of my symptoms prior to my Graves diagnosis. In fact, it was a neurologist who took stock of the symptoms I was telling him about, and asked me if my thyroid had been checked. So, there is a neurological component to things which gets fixed when we regain controlled normal levels of hormone.

[Bobbi]

in reply to: Newly Diagnosed GD — Sad and Scared #1065849

When someone has toxic levels of thyroid hormone, Haute, like you do, their body eats itself up. Yes, most of us do lose weight (although not all — some of us actually gain weight while hyperthyroid), but it is not due to a superb metabolism: it is due to losing muscle mass and bone. The idea of a super-charged metabolism is false. Muscle particularly weighs more than other body tissues, so when we lose muscle, we lose weight. In your situation, imagine elderly people, not young models, when you imagine the weight that you have lost. As we get old, we lose muscle. The arms grow thin and weak, and the chest caves in. Ironically, losing muscle, typically means the onset of fat flab, too, because a muscle cell burns more calories — even at rest — than other cells do, so if we continue to eat the way we normally would, we gain weight when we lose muscle. This is why some folks who are hyperthyroid gain weight instead of losing it.

There are healthy ways to lose weight — getting exercise, being active, and eating the proper foods in the proper amounts — and there are unhealthy ways to lose weight. Allowing hyperthyroidism to continue is probably THE most unhealthy way to lose weight.

The first thing you need to eliminate from your thinking is that gaining ANY weight is going to be "bad." The number of pounds on the scale is NOT what you should be focussing on. When we regain normal, controlled levels of thyroid hormone, the muscle slowly starts returning. It isn’t strong muscle — one endocrinologist called it "mushy" muscle at first — so when we are able, we need to exercise to make it strong again. Returning muscle will add numbers on the scales because muscle weighs more than flab. But your clothes should still fit because muscle doesn’t add inches as it returns.

The second thing that we all need to keep in mind about all of this is that we are not "victims" of our metabolism. It is possible to take some control back. I will use myself as an illustration. I was so sure that I was going to gain weight when I had my RAI, that I started keeping a log of everything I was eating. Everything. I had read, online (like you) the horror stories of weight gain , and was going to prove to my endo that Graves treatments made folks gain weight. The only way to prove it was to keep the log. What happened was amazing. I kept the log, which kept me honest. Normally, if I eat something sweet in the early a.m., I crave sweets all day, and typically "forget" about the early donut when confronted with cookies in the afternoon. By keeping the log, I would remember what I had eaten. I ruthlessly eliminated empty calories: I only ate things that had nutritional value, with occasional detours (a few bites) for a yummy dessert when at a restaurant. And as soon as my doctor gave me the go-ahead, I began to exercise. And I lost 18 pounds after my RAI, while getting adjusted onto thyroid replacement hormone. Then, the pounds slowly started coming back. But I regained 15 pounds without changing clothing size. This is why I can tell you that returning muscle doesn’t add inches. It does increase the numbers on the scale, but it does not make you fat. What that wonderful returning muscle does is give us the ability to eat more without gaining weight, and it gives us back stamina and energy.

Please, Haute, go to some quiet place inside yourself and do an attitude adjustment. Hyperthyroidism kills people. Take the medications. Keep a food log and watch what you eat. Exercise once your doctor tells you it is OK. And, fingers crossed, you will be fine.

[Bobbi]

in reply to: Graves neurology #1065843

I am sorry for what you have been going through. It has to be quite scarey.

To answer your question: A diagnosis of Graves typically comes about in one of two ways (although sometimes someone exhibits both). The first way typically comes with a blood test that shows thyroid levels that are too high out of the range of normal, accompanied by a suppressed (usually non-readable) TSH which is the hormone that comes from the pituitary gland. Thyroid hormone and pituitary TSH are companion hormones — when one rises, the other falls. The second way we get a Graves diagnosis is if we develop Thyroid Eye Disease (TED) — also known as thyroid associated opthamopathy. While the symptoms that you mentioned can occur because of hyperthyroidism (but not the eye disease alone), unless hyperthyroidism is present, Graves will not be considered the underlying cause. So unless you have had abnormally high thyroid levels, your doctors will be looking for another cause for your medical issues.

A second question you had, which is not limited to Graves but can apply to any autoimmune disease: we are told that when someone develops one autoimmune disease, they are slightly more likely than another person to develop a second one. It’s not a guarantee, just a slight increase in probability.

I hope this helps. And good luck finding out what is going on with you.

[Bobbi]

in reply to: Decisions, TT or RAI #1065879

Some folks are given a choice, graciehere, but for others, their doctors will strongly recommend one treatment over another. There are medically sound reasons why some folks should not do TT as opposed to RAI, and vice versa. Try to keep an open mind. Make a list of the reasons pro and con for each of the options. Talk with your doctor about any medical conditions particular to YOU that would weigh in on one side or another, or make one riskier than the other. I know it isn’t easy to do this, but it must be your choice, done in consultation with your own doctor.

Good luck.

[Bobbi]

in reply to: Average Recovery Time? #1065884

Well, Joy, it really depends upon how long someone went undiagnosed and hyperthyroid. My GP at the time told me that she felt it takes a good nine months AFTER someone gets regulated in the normal zone for thyroid hormone, before they are feeling normal again. Obviously, there is progress towards normal all along, but essentially, the body needs to heal from being hyperthyroid.

[Bobbi]

in reply to: Hope not going hyper again:( #1065889

If you suspect that your thyroid levels are out-of-whack, please call your doctor on Monday and schedule an appointment/blood test. If nothing is wrong, so much the better. But if your levels are off, catching it sooner, rather than later, is extremely important.

[Bobbi]

in reply to: Newly diagnosed–help! #1065893

Hi, ewenme, and welcome to the board.

I would recommend that you start collecting your lab reports in a file, so that you can track your treatment. Many of us have found it helpful to have this information. Most doctors do not routinely give us our lab reports, but if we ask, they usually are more than willing to make a copy.

If your current labs show that you are hyperthyroid, I would recommend that you ask your doctor why you are only on a beta blocker, and not some other drug designed to interfere with the production of thyroid hormone. While you might be able to get into an endocrinologist quickly (I did), most of us have to wait a month or two for an appointment to free up. Waiting while hyperthyroid is not usually the safest option, and our GPs often start us on a basic dose of antithyroid drugs while we’re waiting.

As for our eyes, it is fairly common for people with hyperthyroidism to have a wide-eyed stare, that is caused by elevated hormone levels. The muscles of the upper eyelids contract due to the excessive thyroid levels, and not due to any eye disease issues (which is caused by antibodies and not thyroid levels). So, if you see that appearance starting to happen, don’t panic. Upper lid contraction typically goes away once we get our thyroid levels back to normal.

You may be noticing some additional light sensitivity or dryness in your eyes. If your eyes start feeling dry and gritty, get some artificial tears from the drug store or drug department of the grocery store. These are not the "get the red out" type of drop, nor are they the drops designed for allergies; they are designed to supplement the tears of people who get very dry eyes. Dry eyes are commonly associated with thyroid diseases.

I hope some of this info helps. Good luck getting into a specialist soon.

[Author]

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