[Bobbi]

in reply to: New Here #1064582

Well of course you worry about your weight! The problem is that it is very, very hard to lose the weight until you get your thyroid back under control. First of all, you need to be able to exercise (not just "diet") and we are often warned against exercise while we are still hyperthyroid, even if we don’t live in the Mojave Desert. Second, when we’re hyperthyroid we lose muscle — especially in the long muscles of the arms and legs, which do a lot of our "work" and which burn a lot of calories. Losing this muscle looks like weight loss to a lot of people who are hyperthyroid and they think it’s a good thing, but this is not good weight to lose. Muscle weighs more than other tissues, but it also burns more calories, even at rest, than other tissues do. So, when we lose it we cannot eat as much without gaining weight. (There’s been some speculation over time on this board about how that issue could result in some of us gaining weight, over all, instead of losing it.) When we regain normal, controlled levels of thyroid hormone, that muscle starts to slowly come back — and it looks like, and is, weight gain — but its return increases our metabolic rate, and it also helps us to regain our strength. We do have to exercise this returning muscle to make it strong, as well. Illustration: When I was recovering from being hyperthyroid — and I had lost a lot of weight and looked pretty anorexic — 15 pounds of it came back on without me changing clothing size. It was muscle return, not flab. The muscle we lose can be significant.

So, your first priority here must be your health: getting your thyroid levels under control. If you can do that with the antithyroid drugs like methimazole or PTU, great. They typically work to bring control back to thyroid hormone levels. But sometimes they do not, or some patients cannot tolerate them as well as others, or whatever. If that is the case, then the alternative — removing the thyroid — is sometimes necessary.

Congradulations on your new baby! and Welcome to the board.

[Bobbi]

in reply to: Heart #1064603

What you are experiencing, Maria, is most likely "palpitations." The heart is not necessarily beating harder, or faster than normal, but our nerve endings are picking up on the beats (which we normally don’t feel). It is not necessarily a sign that something is wrong with the heart — and it is very common for us to experience it when we are hyperthyroid.

[Bobbi]

in reply to: My Legs #1064653

No, MyTAnswers1, I was not working while I was recovering from Graves. I was able to dedicate time to going to the gym three days a week, once I was cleared for exercise. But I did have teenagers living at home (not as much work, perhaps as little ones, but still requiring energy), and the job of running the house, so I do understand being worn out from things you need to get done. But I did have "flex time." However, one of the liberating aspects of deciding I was a Warrior, was that I sat myself down to figure out what was "necessary" and what was not, when it came to demands on my time and energy. Anything that was not absolutely necessary got eliminated somehow. I found it constructive to ask myself: If (my best friend in the world) felt the way I do, would I recommend to her that she do X? If the answer (as was typical) was "Are you NUTS?!?" then I would find a way to eliminate it, temporarily from my list of "to dos." Sometimes I just eliminated; sometimes I hired/farmed it out; sometimes the dinner came ready made from the deli section of the local grocery store; paper plates which can be thrown out, rather than being washed;

This situation you find yourself in, MyTAnswers1 is temporary. And you may still need to cut yourself some slack. But it will be gone sooner if you can figure out how best to work with the recovery process to improve your strength and stamina. "Exercise" doesn’t have to mean hour-long stretches of muscle "WORK!" It can mean a slow walk around the block after dinner (with the dishes still sitting in the sink). Baby steps. My one guideline with resuming exercise was that I needed to feel a bit better afterwards, not worn out. It takes time, but you can get there.

Wishing you good days soon.

[Bobbi]

in reply to: potassium iodide drops #1064626

I did some quick research online — so the following information may not be completely accurate genuineruby, but it jibes with what I thought might be the reason, so I will pass it along. I think, though, that your best bet is to talk directly with the doctor if you want completely accurate answers.

There is a danger of thyroid storm, during ANY type of surgery when we are hyperthyroid. Operating on the thyroid itself can somewhat increase that danger. Potassium iodide is given to saturate the thyroid cells with iodine before the surgery, and this, for whatever reason, SUPPRESSES the thyroids ability to release thyroxin (T4) temporarily. So, it helps to prevent thyroid storm from occurring during the surgery.

It is not a radioactive substance, but more of a concentrated form of the iodine we get in table salt, I think. So there’s no reason to suspect that it would damage the thyroid. What it probably would do though (a guess) if you were to cancel the surgery, would be to provide more fuel for the hyperthyroid flame — I would expect to go more hyper for a while before the excess iodine that the thyroid would make into hormone would be used up.

[Bobbi]

in reply to: Help #1064942

Some types of arthritis are autoimmune – rheumatoid is, for sure. Others, like osteoarthritis, have more to do with aging and wear and tear than with antibodies, I think.

[Bobbi]

in reply to: Graves’ Disease – Dr. Oz show today and tomorrow #1064644

Hi, James:

I can testify to the fact that our symptoms can be written off as panic attacks/anxiety syndrome. I experienced that very thing myself. If this show can help educate doctors to the necessity of doing a simple, annual thyroid panel, it could save a lot of people a lot of years of suffering.

[Bobbi]

in reply to: My Legs #1064649

Cynthia — Being hyperthyroid is horrid, there’s no other way to express it. But the treatments DO work to get our thyroid levels under control, and our bodies can heal once that happens. You are relatively new to the whole process, so right now all you can see is how sick this has made you. I truly do understand. I could not believe how ill I was at that point in time. And other people, like friends and family members — even some people in the medical professions — have little or no empathy for that. We don’t always "look" sick when we are feeling our sickest. It WILL get better, but you do need to work with the process. And, unfortunately, it is a process. The medications don’t work overnight to get things under control, and even once things are under control, it takes time for the body to heal. But keep your focus on the fact that your body can heal. You have already passed the first, major hurtle we all face with this disease and that is getting diagnosed. For many of us diagnosis is not as simple and as prompt as it should be. But once we are diagnosed, and on treatment, things start to get better, little by little.

Part of of our healing process requires working to regain strength. I mentioned my trip into the hospital gym, and the results of their evaluation, as a way of demonstrating why we need to be wise about our activities as we heal. If I had gone immediately into trying to jog, or power walk, I would have pulled muscles and set my recovery back, and gotten mightily discouraged. I needed to build my muscles up a bit more slowly than my mind would have liked. But by going about things methodically and carefully, I regained my strength and my ability to do what I want to do.

Try to focus on progress — even little tiny bits of progress. Jake long ago wrote a post to this board that helped me a lot. He comes from a native American background, and he chose to compare all of us to warriors. Not victims, warriors. Graves warriors. That was a really helpful idea to plant in my head. I immediately imagined myself as a Valkyrie, wearing a horned helmet and wielding a large ugly sword, and taking constant swipes at the disease — while I was lifting my paperback books as weights. ” title=”Wink” /> Silly, perhaps. But it got me moving again.

[Bobbi]

in reply to: Methimazole and Liver Enzymes #1064637

When you have elevated liver enzymes it means that there is inflammation or damage to cells in the liver. This is due to the fact that inflamed or injured cells leak higher than normal amounts of certain chemicals, including liver enzymes, into the bloodstream, resulting in elevated liver enzymes on blood tests.

There can be a variety of reasons for elevated liver enzymes to occur. Sometimes it is an indication of some type of chronic condition. But, when we are on drugs that are metabolized in the liver — like methimazole — it is important to rule the drug out as a cause. When a drug is metabolized in the liver, it is changed into other compounds , some of which are used in the body while others are waste products. The liver is an organ which helps to eliminate waste products from the body (kidneys also), but sometimes the waste products of a drug’s metabolization are toxic and can damage the liver unless it can get rid of them quickly.

Sometimes the problem is not just a single drug, but a variety of them, taken together that puts pressure on the liver cells. It might be helpful if you consume any alcohol, for example, to eliminate it while you are on methimazole. Tylenol is known to cause liver problems, especially when taken with alcohol, so I would suspect that it is something that might be avoidable while taking methimazole, too. Two examples, but there are probably lots of others. You might want to brainstorm with your doctor about anything else you might be taking that could be contributing to the problem.

If it turns out that it’s likely the methimazole is the problem, typically stopping the drug helps the liver to recover.

[Bobbi]

in reply to: methimazole makes me feel worse #1064675

Hi, Marta:

You have to understand that when we take a drug, and it is absorbed it only works for a certain amount of time, before the action wanes. When we are hyperthyroid, we will feel those hyperthyroid symptoms when the methimazole "wears off." While the methimazole is "active," it inhibits thyroid cells from producing thyroid hormone, and we feel better. But once it wears off the cells go back to zooming out hormone into our bodies. So, if you are waking up feeling hyper every morning, it is probably because the drug’s action has worn off from your dose the day before. Methimazole is better than PTU in terms of action time. Most people only have to take it once a day, and get to a point where they feel fine (i.e. no longer feel hyper). Since you are new to this world of Graves, it could be that your dose will need to be adjusted to get it "just right." But it is normal, especially at first, to have periods where the hyper symptoms come back to remind us that we are still ill.

I hope you are feeling better soon.

[Bobbi]

in reply to: Tired of being tired #1064829

Do not stay in bed all day. Drag yourself up and move about. I know you are tired, but staying in bed will make your muscle weakness much much worse. Do you have a tape player or dvd? Rent comedies and watch them. From a chair or sofa. Do you have a rocking chair? Rock in it — it is a gentle form of exercise for the muscles. It’s summer time: if it isn’t too hot outside, move out and get some sun for a few minutes. Plan to make yourself move just a bit all day long. Seriously, Cynthia, I know you feel rotten right now, but I watched my mom get weaker and weaker when she wouldn’t get out of bed after she bruised her knee one time. We humans are designed for movement, and the muscles atrophy when we don’t use them.

[Bobbi]

in reply to: My Legs #1064647

While we are hyperthyroid, we lose actual muscle mass, particularly in the legs, arms and chest. This muscle does come back to some extent once we are at stable, controlled normal levels of hormone. But, one endocrinologist at one of our conferences described it as "mushy" muscle, which needed to be exercised and toned to rebuild stamina. I also noticed while I was hyperthyroid that the ability of the muscles to "regroup" after exercise of any type was impaired. I had to have a cardiac stress test while I was hyperthyroid (but not diagnosed), and my legs would not work to keep me on the treadmill. The muscles just stopped working. I tried to find out what was happening, if only out of curiousity once I was diagnosed, but other than that one comment from an endo, I could not get answers on the muscle question from anyone. I tried doctors, physical therapists, you name it. So, there are still some "black" areas where nobody really knows what is going on.

I found yoga to be impossible. My muscles were too weak. And the problem is if you push them while they are still weak, you can injure yourself. And, yes, even yoga instructors are injured by yoga. So, what I did instead was sit on the floor and gently stretch the muscles every day. And I would sit in a rocking chair and rock. (Yes, that does move/exercise the muscles a bit.) And when my docs cleared me for exercise, I signed on at a gym inside my local hospital where there were trained exercise physiologists to help me rebuild without injury. When my muscles were tested there, it was discovered that I had EIGHT PERCENT of the strength normally found in a woman of my age. So you can imagine how carefully I had to be to start exercising again. I used small paperback books as "weights" for a while.

I mention all of this because you really do have to understand that while exercise is necessary to getting you back into shape, you need to take BABY steps at the beginning. And since your doctors have not cleared you for exercise, you probably need to confine yourself to gentle stretching and rocking chairs until further notice. You might, also, ask about slow walks. Getting out-of-doors and walking can boost spirits, and it does provide a gentle exercise, especially if you do it every day. Doing any of these things can help keep you focussed on progress rather than some absolute of "EXERCISE!!!" that you might have in your mind. If you see progress, it will make this awful time go a little bit faster.

Wishing you well,

[Bobbi]

in reply to: Tired of being tired #1064827

Regarding the itching. You might have developed dry skin as a result of the hyper condition. Try using a really good moisturizer on your wet legs. I use two, at the same time, one that is not terribly thick, covered by one that closely resembles petroleum jelly. It is important to apply them to damp skin. And, at night, when this first started, I would wrap them in plastic wrap for the night. Oh, I was such a vision of beauty! But it did cause the moisturizer to penetrate the skin better, and it helped eliminate the itch.

As for RAI. You must go off the meds about a week before RAI, in order to enhance the thyroid cell’s "thirst" for iodine. Doctors vary on how long they want their patient’s off the ATDs. But we do go hyper prior to taking the pill. The procedure itself is simple: you swallow a pill (or sometimes a flavorless liquid). It can be a bit nerve wracking because the tech or doctor will bring the medication in to you in a heavy lead-lined container. This is to protect the staff from unnecessary exposure to radiation. Radiation exposure is cumulative over a lifetime. The sun we get today, is added to the sunburn from twenty years ago, which is added to the chest xrays, etc. etc. So people who work around radioactive sources take precautions, even if the radiation coming off is minor. (Think of the dental technician who leaves the room before turning on the xray.)

After you swallow the pill, you are sent home. RAI (I131) is very soluble in water. You will probably be told to make sure you are drinking liquids, because this will help to eliminate any RAI that does not get captured by a thyroid cell. The excess RAI comes out within a couple of days in our urine (we’re told to double flush the toilet for a few days), our saliva (don’t share eating utensils or toothbrushes or such), and our sweat (wash sheets and towels and clothing well). RAI has a very short life-span (measured in half-life terms). After 8.1 days, half of the RAI that got taken into your thyroid is gone. After 16.2 days, only a quarter of it is left; after 24.3 days, only one-eighth; and so on. Scientists have settled on five half-life periods as the "life span" of a radioactive substance. So, in 40.5 days, the RAI is essentially gone from our bodies.

We are told to take special precautions with small children and small pets. This precaution is to avoid giving them an unnecessary exposure to radiation. And with small children and pets, the tendency is to hold them up, next to our necks. Not advisable for the first week. But older children and adults do not require the same vigilance. As long as we can leave some space we do not need to isolate ourselves. (This may not be true for someone who has an immense dose of RAI — like thyroid cancer patients. I am speaking for the Graves’ treatment here.)

Many people throughout the years have mentioned that they took their RAI on a Friday, and then went back to work on Monday. It depends upon the work, and how sick you are to begin with.

Side effects? A sore throat is typical. here is inflammation from thyhroid cells being damaged. How sore varies. I didn’t even take tylenol for mine, but other people have reported significant soreness. And, about one week after RAI people experience really significant hyperness. We call this "dumping" here on this board, because what is happening is that the dying thyroid cells are releasing their stored supply of hormone into the body, all at once. This is not the same thing as thyroid storm, because in storm the cells are making new hormone to dump. After RAI they’re damaged and cannot function to make new hormone, but the do release any they’ve previously made. This is one reason why your doctor wants you to have as low an amount of thyroid hormone as possible. Our endos often give instructions for increasing the beta blocker during this period of time to make us a little more comfortable.

I hope this helps.

[Bobbi]

in reply to: methimazole makes me feel worse #1064671

To Cynthia:

We typically do not take steroids like prednisone to "manage" the Graves because whatever meds we take are long-term, and there are other options for us that are significantly safer for us than the steroids. Steriods have HUGE side effect issues, especially for women. Taking them short term is one thing, but you would need to take them for years. If you are indeed allergic to the antithyroid meds, your usual option is to remove the thyroid and go on replacement hormone.

[Bobbi]

in reply to: Ques on dosing #1064659

I agree, in general, with Shirley. But I do want to suggest that when you have questions related to medicines that you are taking, your best source of information is probably your pharmacist. They have years of training in chemistry and drug-related courses, and they also have literature at their disposal that can provide the answers you need. We tend to under-utilize our pharmacists, imo.

[Bobbi]

in reply to: methimazole makes me feel worse #1064668

The methimazole does not work instantly to make us feel better. It starts immediately to interfere with the ability of thyroid cells to create thyroid hormone. But the thyroid also STORES hormone, and until those stored supplies are used up, we are usually still very hyperthyroid. It can take a week or more for those stored supplies to be used up.

Also, once you are at controlled, normal levels of thyroid hormone, it can take some time before you feel your old self again, because your body needs time to heal. Being hyperthyroid is tough on a lot of different parts of the body.

And, with beta blockers stopping them without weaning off of them can cause the symptoms they’ve been controlling to come roaring back. We need to stop them a little bit at a time.

As to whether or not the nausea is caused by the drug, or something else, it can be helpful to talk with your pharmacist. They have drug literature that will state all the possible side effect symptoms.

I do hope you are feeling better soon.

[Author]

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