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in reply to: anyone have Pretibial Myxedema? #1074909
Just because the letters "-edema" ends the term, do not confuse pretibial myxedema with straight edema. They are different critters.
In P. M. the antibodies cause the skin to toughen in much the same way that the eye muscles are "toughened" (for want of a better term) in the eye disease. It is not just swelling.
in reply to: anyone have Pretibial Myxedema? #1074906I moved the following answer from a different folder. Somehow it got posted there by mistake.
by Nancy Patterson on Sat Dec 20, 2008 9:28 am
Dear Lyn,
Pretibial Myxedema is relatively hard to miss, if it is fully developed. It is caused by the same antibody that attacks the eye tissues, which might explain some eye problems. As Ski said, it is separate from the thyroid portion of our Graves’, and can occur whether your treatment was ATD’s, RAI or surgery.
Usually it itches (alot!), is reddened, and feels somewhat like the skin of an orange. Go pick up a hefty naval orange, close your eyes, and run your fingers over the surface. "Swelling" (as in edema) may or may not be present. Two things that might help identify it are an antibody test, or a round of one of the steriods (obviouusly prescribed by your doctor).
There is not a lot written about it, and what usually is written is found in dermatology journals with a great deal of histological information.
My guess is that if you start a new thread on this forum with a title like "anyone have Pretibial Myxedema?" you will hear from those of us who have had it. It makes my legs itch just to type about it. Good luck!Nancy Patterson, PhD
Founder, Graves’ Disesase Foundation
~Educate~Encourage~EmpowerNancy Patterson
Facilitator
Posts: 58
Joined: Sat Oct 25, 2008 9:47 am
Private messagein reply to: anyone have Pretibial Myxedema? #1074905Pretibial myxedema is not a swelling of the hands and feet. I had it, and it also does not itch. (I later developed eczema in the skin where I used to have pretibial myxedema, and that does indeed itch, but my dermatologist assures me they are separate problems.) With PM, the skin develops a consistency of an orange rind, the skin toughens, dimples, and turns a bit reddish. This is typically isolated to the legs, especially around the ankes. I have not heard of it affecting the hands, either.
So, I suspect what you are experiencing is not pretibial myxedema
in reply to: Graves Eye Disease #1075498LYN:
Endocrinologists do not treat the eye disease. They often give us a crude test (follow the moving pencil/finger) to see if our eye muscles are tracking correctly. An opthamologist would do this as well. So, they have some idea of how much impact the disease is having on the eye muscles. But, again, they are not the ones who treat it, nor are they necessarily expert at it. Ophthamologists are.
Puffiness around the eyes can be aggravated by sleeping flat. If you notice significantly more puffiness in the mornings, you can try elevating the bed by putting boards, or books under the supports at the head of the bed. (Don’t simply elevate your head by piling pillows up: you can throw off your back/neck.)
IThe eye area is particularly sensitive to "insults and injuries", so the puffiness might be a more temporary result of suddenly dropping thyroid hormone levels — at least that was my interpretation of things when it happened to me. Yes, I had the eye disease in a moderate form, but the battered wife look occurred right around the time I was getting treated and had gone slightly hypo (before we got things adjusted). There I was feeling relatively good for the first time in a year or so, and I suddenly "looked" ill. What an irony. Anyway, keep this in mind if you go to an opthamologist and they don’t want to do any treatments yet. They typically take a wait and see approach to intervention unless they think the optic nerve is actually being threatened. There are a variety of good medical reasons for this cautiousness, but for those of us panicked by our changing looks and the possibility of the eye disease itself, their caution can be frustrating.
in reply to: Graves and Weight… #1074931Weight is lost when we are hyperactive due to a variety of reasons, but one of the major reasons is often the loss of muscle mass. Muscle weighs a lot compared to other tissues in the body, and when we lose muscle, it looks like we are losing weight. You can actually see the loss of muscle in photos of some folks who have been hyperthyroid (and untreated) for a while: the men have caved in chests and arms are skeletal, for example. One sign of the lost muscle is the loss of strength in the arms and legs.
But losing weight via losing muscle is very bad weight loss. Muscle weighs more, but it also burns more calories, even at rest, than other tissues do. With muscle lost, we cannot eat as much as we are normally able to, without gaining weight.
That’s the background. When your thyroid hormone levels are brought back under control, the muscle starts to slowly return. And it looks like (and is) weight gain. Try to keep in mind, however, that this is good weight gain — it will raise your metabolism (allowing you to eat more), and it will make you stronger again. You need to exercise (when the doctor gives the OK) to strengthen the returning muscle, because it is "mushy" muscle when it first returns (that was the term used by an endo in one of our conferences).
So, the short answer is "yes" you will regain weight that you lost while hyperthyroid. If you eat wisely and well (i.e. three balanced meals, minimum, watching portions), the weight that comes back will be good weight, as opposed to bad weight. I lost about 25 pounds in all through the Graves and dropped three clothing sizes. When I started to work out, the exercise physiologist who measured my strength told me that I had eight percent of the strength of a normal woman my age!!! I could only do bicep reps with small paperback books at first. I was very, very weak. I eventually regained 15 of those pounds, staying in the same size. Through the twelve years since my RAI, I have regained the entire amount of the weight, but it was only after I stopped eating well and started consuming empty calories again (on a regular basis) that the "bad" weight came back. I stayed at that smaller size for years[/u.]
in reply to: New Thearpy News…… #1074937Thyroid storm is a rare, but medically dangerous situation that sometimes occurs with hyperthyroidism. The thyroid goes berzerk and starts pumping hormone into the body in huge amounts. It creates a medical emergency situation. It does not happen all that frequently, and when it does happen it is usually because of untreated or undertreated hyperthyroidism. If someone is effectively treated with any of the options, storm typically does not occur.
As to why your endo is so concerned about that possibility that he has sent you directly to surgery, only he/she could tell you. It might be personal preference, but it might also have something to do with the way you responded (or didn’t respond) to the ATDs. But anything any of us contribute here would only be a guess.
Antibodies are like keys that fit one specific lock. They are created by the body with a specific tissue or combination of proteins in mind, and they leave everything else alone. So antithyroid antibodies do not attack the liver, or other organs, and they don’t protect us against diseases: they attack the thyroid with the purpose of getting rid of it. Removing the thyroid eliminates (hopefully) the possibility that you will ever again be made ill by hyperthyroidism. Will you still have Graves? Technically yes. None of the treatments available to us eliminate the antibody that is making us ill. Will thyroid issues make you ill again? Most likely not, provided you are on the proper dose of replacement hormone. There is a slight possibility that the surgery will not take out enough thyroid tissue to prevent hyperthyroid conditions (the number was about 10% of the time twelve years ago, when I was treated). So, the surgery should "cure" your hyperthyroidism, but you would still "have" Graves (not that you would be ill any longer from it).
And while you may know folks who have been hyper all of their lives, they have not necessarily been hyperthyroid. The term "hyper" is the same, but the medical situations are vastly different. Years on end of being hyperthyroid would be debilitating and life threatening.
in reply to: Hi, from Sherry! #1074944Out-of-whack thyroid hormone levels can lead to hair loss, especially on the hypo side of things. When we are hyper, the hair tends to get brittle, and break. When we are hypothyroid, hair can fall out in clumps (seemingly). There were weeks when I was losing more hair than my pet collies. We do not go bald, but we do lose more hair than normal. Thyroid levels, therefore, are something to check. I don’t think the medications cause us to lose hair, except insofar as they are in an incorrect dose, thus making us either hyper or perhaps hypo.
The body "feeds" the hair, and the nails, last — they are considered non-essential. So when we are sick, the hair and nails show the effects early and they are the last to recover. It is necessary to be a bit patient. But if your daughter’s levels have been adequately stable for long enough, the hair loss should stop.
One aspect of weight that is often misinterpreted: some, if not most, of our weight loss while we are hyperthyroid comes from lost muscle mass, especially in the large motor muscles of the legs and arms. This is very bad weight loss because having muscle raises our metabolism, allowing us to eat more without gaining weight. A converse of this is that with the muscle gone, if we eat ‘normally’ we can gain weight easier. When we get stabilized at normal levels of thyroid hormone, the muscle starts to come back. This, obviously, appears as weight gain: muscle weighs more than other tissues. But , muscle burns more calories, even at rest, so this is good weight gain. It is very difficult for many of us to get beyond the numbers on the scale, when they are going up particularly, and think about good or bad weight gain. Over time, things will moderate. A key would be clothing size. I regained 15 pound of my lost weight after RAI, but stayed in the same general clothing size. Muscle typically takes up less room than flab.
The returning muscle must be exercised in order to strengthen it. But having it will allow us to eat more without gaining additional weight. I have a friend who still runs marathons (she used to do triathlons, but when she hit 60 years old she gave the other two parts up!) Anyway, she can eat two our three times what I can eat, and she is about a size 1. It is not just that she exercises regularly — it is also that she has lots and lots of muscle tissue compared to me. So, try to encourage your daughter to have patience with the weight issues, to eat properly, and to get as much exercise as she is allowed by her doctors, so that she is strengthening the returning muscle, and her weight issues should become ok again.
in reply to: RAI VS REMOVAL OF THYROID #1074972What we experience are more pronounced hyper symptoms like rapid heart rate, tremors, "nervousness," irritability, inability to sleep well, hot flashes, etc. Nothing new — just the old ugly symptoms rearing their head more vigorously. About 20% of the thyroid’s hormone production is T3 which is the form of thyroid hormone that is directly, and immediately, used in the cells (as opposed to T4 which must be converted to T3 in order to be used in cell metabolic processes). So the T3 particularly goes right to cells revving them up. Fortunately, T3 has a very short life span: it’s half life is three-quarters of one day. So the T3 that is released after RAI is used up fairly quickly.
I think the problem for some folks is that after RAI they expect continuous improvement, and this dumping period feels like a set-back. Also, some people online call this "thyroid storm" which is a fearsome concept, but this period isn’t the same: in storm the thyroid cells are continuously producing new hormone in extreme amounts in addition to using up their stored supplies. After RAI, the cells are not making new hormone — simply releasing hormone already made and stored in thyroid cells. So after RAI the period of excess hyperness is typically of limited duration.
Some endos prescribe medications to be taken during this period of time. For example, my endo told me to double my dose of the beta blocker when this occurred. I did that, but only for a couple of days. It depends on your endo, and your level of hyperness to begin with whether or not that is the case. Also, some folks cannot safely take the medications most often prescribed.
in reply to: RAI VS REMOVAL OF THYROID #1074970You are about due, Mickey, for a bit of excess hyperthyroid symptoms. Roughly a week after RAI, thyroid cells that are damaged by the RAI start releasing their stored supply of thyroid hormone into the body. These cells are not making new hormone, but anything stored is let loose. As a result, we can experience a spike in hyper symptoms that lasts a few days. I mention this phenomenon because some folks have panicked when it occured.
I hope you continue to feel better each day,
in reply to: Questions about TSH Levels and Running #1074987What some of you seem to be ignoring is that Cath’s doctor told her she had to go on a temporary hiatus from running. That’s the bottom line. The doctor knows she’s a runner. The doctor knows it is important to her. And the doctor knows what her Graves condition is like. And the doctor has vastly more experience than any of us with the hazards of running while hyperthyroid. When the treatment options have kicked in, I am sure that the doctor will let her know when it is safe for her to resume that activity. This is especially true since if Cath is like me, she will be nagging the doctor to let her run again.
There may in fact be safe alternatives — perhaps walking — that can be explored with the doctor. Only her doctor can tell her what activity level is safe for her at this particular moment in time.
in reply to: hyper to hypo- what now? Discouraged #1074958Our doctors diagnose Graves based on any number of factors. Hyperthyroidism is diagnosed strictly by blood tests. If there was too much thyroid hormone in your blood, you were indeed hyperthyroid. Why is left to other tests, typically, but the vast majority of hyperthyroidism cases are due to Graves.
Some of us have the antibodies for both Graves and Hashimotos, which can mean that we move between the two diseased conditions. If you are told this is the case, a typical recommendation is to eliminate the possibility of the hyperthyroid state by removing the thyroid, and then continuing to treat the hypothyroid state with replacement hormone.
The purpose of antibodies is to eliminate whatever tissue/substance they are designed to attack. Thus, our thyroids are permanently diseased. The only good thing is that there are treatments which help us to remain healthy, despite the presence of these antibodies. But ultimately we can all expect that our thyroids would conk out on us, and we would become hypothyroid.
If I were in your place, I would ask the office staff at the endo’s office to put me on a list of people who would be willing to come in on a moments notice in the event someone cancels their appointment. And, I would call the office every day to see if there had been any cancellations (to keep reminding the staff, politely, that I want to see the doctor sooner, rather than later). The other thing to keep in mind, however, is that being hypo is not quite as dangerous as being hyper, even though it is unpleasant. Thyroid cancer patients routinely had to go extremely hypothyroid in order to have certain periodic tests.
I do hope you are feeling much better soon,
in reply to: Symptoms of Graves in Children? #1074978Your best resource is your pediatrician with this question. I don’t know that the symptoms are any different from adult symptoms — and there’s lots of room for interpretation even then. My children were older, and I simply told them that they needed to make sure that their thyroids were checked annually. But if there is a reason to suspect an issue, then talk with the pediatrician.
in reply to: Comfort and Joy #1074961I can tell you what I did to keep my spirits up: I watched comic movies and Bill Cosby monologues on my TV. Anything that can make you laugh will help you a lot. We all have different senses of humor (I do not laugh at the movies my son finds funny!), so you need to find things that make you laugh. But it really does help.
The other thing you need to do is ruthlessly eliminate all but the most essential activities. That is hard to do during the holiday season, but if you do not wear yourself out, you will not feel as many "down" days. Wearing yourself out is guaranteed to make you feel worse.
I had my RAI right before Thanksgiving many years ago, so I was at my lowest ebb then. I figured out how to minimize my activities: I bought prepared foods, I didn’t make Christmas cookies, I got help putting up a few decorations, but settled for playing Christmas music on the CD player instead of my usual level of activity. I ordered from catalogs. ANYTHING to cut my "to do" list down to the miniscule size it needed to be for my physical condition. After the holidays, my oldest child told me that she thought I had "gone all out" for Christmas and had made it really special! So, my point is: we are more important to our families than what we "do" is. Being there for them, during the holidays, instead of being frantic, or frazzled, is appreciated. Many of us tend to be Type A doers, but right now, we cannot do what we normally would. A way to judge: if your very best friend felt the way you do right now, would you ask her to do "X"? If not, then you shouldn’t either.
Wishing you happy holidays,
in reply to: RAI VS REMOVAL OF THYROID #1074968There are many good, medical reasons why any one patient should do one treatment over another. Our doctors are the people qualified to make that judgment call, and they give us their best advice. If you are not confidant that your doctor’s advice is the best, then you need to find another, equally qualified MD/endo and get a second opinion. There are lots of folks here online who would be more than willing to tell you what to do — but none of them are qualified to do that and none of them have your specific set of medical circumstances so what they did is irrelevant to what you should do. Please, discuss things carefully with your own doctors instead.
As for the way you worded your subject, RAI does indeed remove the thyroid, just as surgery removes the thyroid. Both have the same percentage incidence of the treatment not working — i.e., leaving us still hyperthyroid. Both typically require us to then take replacement hormone, which can take some time to adjust to the proper dose. There are pros and cons to both options. RAI does not involve some of the risks that surgery does (even in the hands of a well-qualified surgeon). But RAI takes longer for the effects to settle in. And, sometimes, RAI aggravates an existing eye disease temporarily. So patients with significant eye disease are sometimes routed towards surgery rather than RAI. (It is thought that RAI stimulates an immune system response — and any immune system response raises the numbers of antibodies, and therefore increases the symptoms of any autoimmune disease.)
I do wish you good luck with your decision-making and treatment. And, if there are specific questions about treatments, the moderators here are more than willing to give you that information. (Just not advice.)
” title=”Smile” />in reply to: Questions about TSH Levels and Running #1074983Hi, Cath, and welcome to our board.
In general, when we are diagnosed as hyperthyroid, the lab work involved shows TSH levels (Thyroid Stimulating Hormone), which comes from the pituitary gland, and the actual levels of thyroid hormone (typically T4, T3 and, perhaps, T7 which is a ratio of the first two). Our endocrine system has feed-back mechanisms in place to regulate the production of hormone. In the case of thyroid hormone, the feedback comes from the pituitary. When thyroid hormone levels get too high, the pituitary lowers it’s production of TSH; and if thyroid hormone levels get too low, the pituitary raises it’s production of TSH. (Some folks find it helpful to remember a seesaw, with TSH on one end, and thyroid hormones on the other.) The TSH is a bit like a "running average." It moves somewhat more slowly than do the actual levels of thyroid hormone. The test for it is also very fine-tuned (i.e., it is possible to measure extremely small amounts of it with accuracy). Thus, our doctors use the TSH as the guide to how well our treatments are going. It can help if you start getting a copy of your lab reports as they are done, and keep a file. This helps if you ever change doctors; and it also helps you to keep track of treatment.
There are several reasons for the prohibition on running. Excessive levels of thyroid hormone cause us to loose muscle (and bone, too). There may also be some sort of adverse effect on the ability of muscle fibers to snap back from exertion in their normal way. PUtting excess strain on them, at a time when they are not functioning properly can lead to injury. But the most important part of the equation is the heart, and there are two problems for the heart with excess thyroid. First off, the heart is a muscle, too, subject to the same problems as the other muscles. But second, excessive amounts of thyroid cause the heart to beat faster (and less efficiently) and, more importantly, it can interfere with the rhythm of the heart beat at unpredictable times. Arrythmia is dangerous. Until our thyroid levels are brought into complete control, we are advised to limit exercise. Ask your doctor about slower walks, something like that, to help get you out, if you are feeling like some exercise.
The short-hand name for the drug that you are on is PTU (much easier to spell than the "real" name!), and you will see PTU in posts on this site. (Also ATD — antithyroid drug, which is what PTU is.)
As to whether or not you will be OK to run in a March marathon — only your doctor can give you that information — and it is unlikely that he/she will hazard a guess until much later. How well the drug works for you will be the important factor. I will mention that an Olympic track gold medalist was diagnosed with Graves about 12 years ago or so, and she came back to compete in subsequent Olympics. I believe she did RAI, however. Not that it matters, necessarily. The point I’m making is that we can get well again if the treatments work to control our thyroid hormone levels well.
And, if you have autoimmune Graves, you need to start thinking in terms of permanant disease. Not necessarily permanently ill, but permanent disease. The difference is that we need some type of treatment forever. Our treatments do work to give us back health if we catch the disease early enough. And, since we have two general options (ATDs or thyroid removal) if one treatment is not effective, andother one stands a very good chance of working. There can be respite in the form of a remission (technically, being able to go off the drugs and have normal thyroid function for a year or more), but remissions are unpredictable, and by definition end, so even if you do experience a remission you absolutely must keep an eye on your thyroid levels for the rest of your life. So, I recommend that you keep an open mind at this point about what treatment option might be best for your needs. There are books recommended on this site that can give you very good information about the drugs involved, the side effect issues, etc., so that you can make an informed choice as options are presented to you in the future.
Wishing you happy holidays, and better health soon.
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