Forum Replies Created
-
AuthorPosts
-
in reply to: New and have many questions #1062154
No, your immune system still makes the antibody that caused the problem. But if you have had RAI to remove your thyroid, and it successfully eliminated the hyperthyroid issues, this antibody can no longer make you ill. Think of it like this: the TSI antibody is a key, and it ONLY works on a specific lock called "thyroid cell." You have thrown away the lock. The key still hangs around, but it has no effect on the rest of your body. That is a bit of a simplification, perhaps, but essentially true. We don’t quite know whether or not the TSI is the culprit with the eye disease, or the skin problems (TED and pretibial myxedema). It may cause problems there, but most of us do not experience those problems, so there may be some other antibodies involved there.
in reply to: taking Levonyxl #1062185I would suggest that you talk with your pharmacist about how to take the replacement hormone. Two hours is far longer than I’ve ever heard of having to wait to eat. Typically we are told to wait a half hour to an hour. But it could be that the specific preparation that you are on makes the difference, so please check with the pharmacist.
We are told not to take calcium supplements or vitamin supplements for a minimum of four hours. That does not mean that we cannot eat foods with those vitamins and minerals in them. Again, double check with your pharmacist about your specific replacement product, but I don’t think you need to worry about your morning yogurt as long as you wait the prescribed time to eat after taking it.
Hi, and welcome to the Board.
There have been some recent research results that suggest that PTU may be harder on the liver than previously known. As a result, your doctor may suggest to you that you try some other form of treatment long term. Either the other antithyroid drug, or removal of the thyroid (via RAI or surgery). It might be a good idea, while you are in reasonably good shape, to start researching those options. There is a reading list of good sources suggested by the NGDF from the main home page that can be helpful. Researching online can be iffy: there’s probably more bad information online than good. So try to use medically sound information sites if you are working online.
As for whether or not your eyes will go back to normal — it depends upon how much permanent damage to the eye muscles occurs while we have TED. You may understand the process, but in layman’s terms our eye muscles react to the antibody attack by getting thicker and stiffer. When the antibody attack subsides — and it does, we call it the "cold phase" of the disease — the symptoms alleviate somewhat. How much varies from one person to the next. I had slightly bulgy eyes, and flickering double vision. It was pretty awful, even though I didn’t have the worst form of the disease. But I couldn’t wear the prisms some folks use to get rid of the double vision, so the disease was somewhat crippling for a couple of years. I couldn’t drive safely, for instance, and in my community, if you cannot drive you are really limited as to what you can do. Well, when I got to the cold phase of the disease, the majority of the bulging went away over time, and the double vision only plagues me if I am very tired, or hypothyroid. So you, too, will likely see an alleviation of symptoms, but how much is up for grabs.
in reply to: New here. My journey with Graves #1062203Just a comment for you about dreading hypo. I know that there are many folks who feel pretty awful while even minorly hypothyroid. But there are some of us — and perhaps it includes lots of people as well — who feel pretty good when hypo. I’m not talking about severe hypo, just minor hypo. I’ve gotten to a TSH of almost 13 and not felt bad. Scratch that: I not only didn’t feel bad, I didn’t know I was hypo. Hopefully you will be more like me than not.
Your doctors seem to be monitoring you frequently, so most likely there is very little chance that you will go excessively hypo.
Wishing you good days ahead.
in reply to: Osteopenia – Medicate or not? #1062267While we are hyperthyroid we lose bone. So any connection between Synthroid and osteopenia or osteoporosis has to do with the wrong dose of it over an extended period of time. Keep firmly in mind that Synthroid IS T4 — it is chemically identical to the body’s own thyroxin (T4). So, in and of itself it is not harmful to us. The wrong amount of it, over time, is.
Steroids also cause us to lose bone — so if you are taking them for the TED, know that they are a problem as well, long-term.
My mother-in-law didn’t have to do much of anything to break bones, either. Stepping off a curb, not falling, she fractured her foot. Worse, a jolt caused stress fractures in her spine. Taking osteopenia seriously is important. But know, too, that osteoporosis is a natural by-product of aging. The way it was explained to me: Throughout life, there are cells which remove bone, and cells which make new bone, active in the bone structure. Until we get to our twenties or so, the cells which create bone are the most active, and our bodies are "banking" bone. After our twenties or thirties, however, the cells which remove bone gradually, over time, become more predominant. And by late life, they can be causing the swiss cheese type structure that is associated with osteoporosis in bones. Some people are genetically blessed with more solid bones than other people. Your family history can be helpful in guiding you as well. If you remember elderly grandmothers and aunts who were bent over when they walked, you need to pay more serious attention now to the osteopenia.
What can we do? WEIGHT BEARING EXERCISE stimulates bone creation. So, daily walking, jogging (if your joints are young enough), etc. is helpful. Lifting weights — ditto. Swimming, unfortunately, is not weight-bearing, so while it is a healthy way to exercise, it does nothing for the bones. Ingest plenty of calcium. That is why we have the recommendation after a certain age to take calcium supplements. (Most of us do not eat enough calcium-rich foods to compensate for the loss of bone.)
And keep Kimberly’s comments in mind as well: just because some bad side effect is posted on the web, it doesn’t mean that it is COMMON. There are millions of folks posting to the web, and millions of us have taken the drugs for our bones. It has been a minority of people who have had bad problems, and most of them were taking huge doses of these drugs for other reasons than osteoporosis. It could be that, over time, more problems with these drugs become evident, as more people take them for longer periods of time. But we just don’t know.
in reply to: Decrease in the medicine dose #1062272Well, if you were severely constipated, that would be a second indication (your doctor’s instructions to lower the meds being the first) that you were hypothyroid. Methimazol interferes with the chemical reaction by which thyroid cells turn iodine into thyroid hormone. It acts as a chemical block to the production of thyroid hormone. And you have to get what I call the Goldilocks dose of it: too much and you will be hypothyroid; too little and you will be hyperthyroid. You need to get the dose "just right."
So, you need to know that you were feeling wonderful and were hypothyroid. I point that out so that you will not fear "going hypo." But hypo is not good for us either (constipation being one of the problems) so you need to have a somewhat higher level of thyroid than you have been feeling wonderful at.
It could be that the doctor has lowered your medication too much — it is, after all, a balancing act. But you will need to tough things out for another month or so, in order to find out. It’s also possible, though, that within a few days, you will find that you are not as troubled by symptoms are you are at first. It can take some time to settle in to a slightly higher level of thyroid hormone. And, if you’re like me (who also feels well while slightly hypo) ANY hyper symptoms bring back bad feelings, so it can take a while to adjust to the fact that a slightly higher level of thyroid isn’t necessarily "bad."
I do hope you are feeling better soon.
Hi — While it’s nice to "see" you back, but I’m sorry you’re having problems.
The first thing, and THE most important thing despite how hard I know this will be for you: Do Not Mess With Your Meds. You obviously sort of get this, already. But there is no way to determine via a blood test whether what is going on is your thyroid, or your meds, if you are tinkering on your own with your dose. You absolutely must stay on one consistant dose for a minimum of six weeks in order to tell whether the dose is appropriate. And, without knowing if the dose is appropriate — on average — there’s no way to tell whether what is going on with you is related to your thyroid or to something else.
Something else? Well, I have a friend who is not a Graves patient who was in and out of the emergency room for almost a year with issues somewhat similar to what you are describing. Her heart rate would soar. Her blood pressure would go up. Palpitations. She wore heart monitors to try to figure out what was going on. It was terrifying for her. And it turned out to be a side effect to a medication she was taking for pain from a herniated disc. The minute she stopped the medication, the problem went completely away. This is only one example. There can be others.
One of the reasons why so many of us suffered for so long without a Graves diagnosis is that the symptoms — racing heart, yada yada — are so similar to OTHER problems or issues as well. You and I (and everyone else on this board) are so used to blaming Graves for these symptoms, that we sometimes forget that thyroid is not the only thing that could be causing these oh, so familiar problems. But there could be other things going on. You need to be able to rule thyroid out (or in) completely. And the only way to do this is to maintain a consistent dose of replacement. And keep a log. Become a scientist and observe ALL the conditions which surround the problem for you, and write it down. When you feel the palpitations/have a heart rate soar, what are you doing? What are you eating? Are there medications involved? Was there a particularly stressful series of events? While it would probably be relatively simple to fix if it turns out to be your thyroid, if it is not your thyroid you need find out what IS going on.
I would also recommend, for safety’s sake until you determine what is going on, that if you KNOW that running uphill creates this problem absolutely every time, stop running up the hills. Walk up the hill, shorten your runs, until you figure out what the problem is. If your training routine is straining your heart, rather than training your heart, you need to back off.
in reply to: One month till RAI – Hypo? #1062366Weight issues are extremely complicated when we are hyperthyroid. We lose muscle — that’s why we start to feel so weak. But muscle weighs more than other tissues, so losing muscle looks like weight loss. It is BAD weight loss, because muscle burns more calories, even at rest, than other tissues do. So we lose muscle, and our metabolism lowers — we cannot eat as much as normal, without gaining weight. Some people gain weight while hyperthyroid. Repeat HyPERthyroid. So, just weight gain alone is not an indication that you have gone hypo. Once you regain controlled normal levels of thyroid hormone, the muscle starts to come back (it looks like weight gain). Until you’ve been at controlled levels for quite a while, you can expect your weight to fluctuate, before going back towards normal.
Hi, Ryan:
As far as I know, nausea and vomiting are not listed side effects from the drugs you are taking. And, it is entirely possible that this episode is unrelated to your Graves. We have a tendency — ALL of us — to blame our treatment for any other symptoms that come along. It is natural. But it isn’t necessarily so.
I do hope you are feeling better soon.
in reply to: When to make the decision re RAI or more ATD #1062317The point of taking the ATD is for it to make you well again, not just slightly less sick. So, after 10 months on the meds, and still feeling symptoms, I would be seriously questioning the doctor who is monitoring your treatment.
For instance: When you are taking an ATD, you have to be on just the right dose, and fluctuations in antibody levels can alter how much you need from time to time. So if you are not feeling well, you might need to change the dose of the medication.
Or (and this is what happened to me), the medication itself might be presenting complications which make you feel poorly. There is another ATD (I don’t remember if you said which one you are on, but there are two), which might work better. And there is definitely removal of the thyroid as an option. The replacement hormone IS thyroid hormone, and side effect issues are limited to whether or not we are taking the correct dose, they don’t arise from the body’s inability to process the chemical efficiently.
If the GP is the doctor who is monitoring your thyroid medication, you have to put away your concerns about people knowing you are ill and go back. You ARE ill, but we do get well again with this disease. That is what you should expect from any of your treatment options, including the drugs. Don’t be fooled by the sound of online forums like this one. The people who post on these forums are the newly diagnosed (like you), or the relatively few people who have lingering complications. But they are NOT representative of the entire Graves community. People who get well again, go back to their lives and they stop posting on boards like ours. NGDF has people who have gotten well again act as moderators here to provide some perspective. Kimberly (on meds), Ski and I (RAI) have monitored this board for years. And I can tell you that if you go back into the archives, you will see the same stories over and over again — the names change, however. Because once the effective treatment is found, people no longer need our support.
So expect to feel well. And if you are not, go back to your doctor to find out why not.
in reply to: Hello, Warriors. Rapunzel is back: Hair loss? #1062329Your hair is probably falling out due to wonky thyroid levels – and it will continue until you get to normal levels. When we are hyperthyroid, our hair is rather brittle, and tends to break off if roughly handled. As we go hypothyroid — especially when we go rapidly hypo after RAI or surgery — the hair comes out in clumps. We are not going bald. Hair is considered a "non-essential" by the body. Hair and nails are the first parts of the body to lose nutrients when we are ill, and the last to get them back once we regain health. No matter what the cause. So the best thing to do is wrap patience around you, like a cloak, and keep the thought that "this too shall pass."
in reply to: Hello, Warriors. Rapunzel is back: Hair loss? #1062327Hi, Rapunzel:
There were times in my Graves journey when I was losing hair in clumps, like my collies. It would have been completely distressing, if I hadn’t had this board to help me understand what was going on. Anyway, once my thyroid levels were regulated, the hair loss issue essentially went away, and I am back to having my normal amount. But I do understand how awful it feels to see it thinning.
in reply to: RAI Fears – need some possitive feedback! #1062343Just to add another voice — I am another RAI success story. And, like Ski, I know lots of other folks who had success with it, as well, including my own mother. In addition, I happen to know four or five people who had thyroid cancer, who have had much, much, MUCH larger doses of RAI than we get, and they, too, are well again. Properly used, RAI is a useful medical tool.
in reply to: PHOTOPHOBIA BIG TIME-any help out there? #1062466You probably know about these already, Shirley, but in case you don’t:
My eyes have been light sensitive ever since the TED. Like Rapunzel, it isn’t as bad now as it used to be, but I got used to a special type of sunglasses that fit completely around the eyes. They have a top piece that extends to the forehead, and side pieces which block light from the side. They are really effective. There are typically some of these at drug stores that are molded in a single piece of plastic, and they are pretty inexpensive. There are also some, called FitOvers, I believe, that I can sometimes find at the quick glasses types of places like Lenscrafters, and I also order them online. I don’t leave home without them.
I think light sensitivity is very common with us. But it wouldn’t hurt, since you are having such a problem with it, to talk things over with your opthamologist.
in reply to: RAI Treatment and Now The Side Effect #1062375I’m not sure why you should still be on tapazole five months after RAI. I hope you are actually looking at your blood tests as they come in so that you, too, can see whether or not you are "almost normal" or not. I wouldn’t expect an endo to misread blood tests, but my GP did in fact misread mine, so it’s a thought.
As to weight gain after treatments like RAI/surgery, etc. hyper levels of thyroid hormone remove muscle, and the muscle does come back slowly after we normalize our thyroid levels. Muscle weighs more than flab, but it occupies less space typically. So, a better gauge of your weight issue is not the absolute number on the scale, but how your clothes are fitting. If you are regaining muscle you WILL be gaining weight. And especially since you have been working out so frequently you should be seeing muscle rather than flab for the most part. I did regain 25 of my lost pounds without changing clothing size.
-
AuthorPosts
