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in reply to: Post RAI and having changing symptoms #1062382
First of all, yes, it is possible for there to be fluctuations. Remember, the cause of the problem in the first place was antibody action, which can rise and fall for no well understood reason. So, if there is thyroid tissue left that is viable, fluctuations in antibody levels can cause changing symptoms. The purpose of RAI or surgery is to eliminate enough of the thyroid tissue so that it no longer pushes us into hyperthyroid territory. And, as I understand things, nowadays, the doctors try to kill off most, if not all of the thyroid (ablation), rather than trying for just "enough." But there still can be some thyroid left, especially when you are newly into the process.
Second, though, is that our bodies let us know when things are "off." Anxiety feelings can be associated with a lot of "off" possibilities. We associate them with hyperthyroid states because that is so very familiar at this point. But it can also be a sign that your levels may be starting to go too low, or simply that your body is signalling that there’s been a big change in the thyroid hormone level. So, you need to pay attention, because it is better to catch hypo conditions early than to let yourself go seriously hypothyroid. (For the most part, we do not go seriously hypothyroid if our doctors are checking us at appropriate times.) If you start to notice constipation, cold intolerance, things like that. Call your doctor and see if you can have some blood work done to determine where you thyroid levels might be. It’s possible to go too soon — which is why our doctors typically make us wait at least five or six weeks. If you check too soon, the TSH levels will not be an appropriate indication. But you are getting to that five week mark, and so if you start detecting signs of hypothyroid, you would want to call your doctor.
The main thing I can tell you to do right now, is to notice "improvements" rather than look for any abject "normal." Our progress back to health is slow. We need to be at controlled levels of normal thyroid hormone for our bodies to be able to START to heal. We need months AT normal for that healing process to truly bring us back to health. So it is a process, not an instant fix. You are on the way. But it can be discouraging sometimes if you are only looking at the day’s symptoms, rather than looking at improvements over time, however wee.
Wishing you lots of signs of improvement as the days go on.
in reply to: Managing stress and diet #1062405I have absolutely no expertise when it comes to h.pylori (sp?) issues, but the BRAT diet doesn’t sound wise from a GD point of view. If you still have your thyroid, the only food you must avoid like the plague is seaweed/kelp. It contains huge quantities of iodine, and can throw off your thyroid function in unpredictable ways. Some boards will have postings telling people to avoid foods that contain goitrogens — chemicals thought to cause goiter. But that isn’t necessary, because the wee amounts of the chemical in the quantities that human beings could eat, would make no difference. (According to my endo when I ran that idea by her.) What we need, while recovering from hyperthyroidism is a diet that is nutritionally dense. I.e., no empty calories, and foods that contain lots of vitamins and minerals and proteins. Proteins because we are trying to regain muscle lost to hyperthyroidism. Calcium because we lose more bone than normal while hyperthyroid. Going on a diet that limits nutrition is not going to help you recover from the Graves.
As to yoga or tai chi –or whatever you try to do physically — start with BABY steps until you know how your muscles are going to react. It is very easy to over do, even with something like yoga.
Perfectionism. Yes, I can identify with that. And I can say that one of the true benefits of having been so horridly ill with hyperthyroidism was that I learned that what I thought I had to do, and what I really "had" to do, were vastly different things. I was ill over Thanksgiving and Christmas, but had the diagnosis. And I decided that I had to pace myself better. I was so exhausted all the time. So I didn’t do more than one-third of what I normally would have done for those holidays, if that much. I didn’t bake for hours at a time. I decorated the Christmas tree and put on Christmas music. But I bought ready made foods that didn’t require a lot of preparation. That was it. Sometime after Christmas my oldest child turned to me and said, "Mom, you really went all out for the holidays this year. It was really nice." I was floored!!! "But I didn’t DO much, " I replied. "Yes, but the house looked beautiful and we had a really good time." I learned a huge lesson with that conversation. My family didn’t need me to do all the stuff that I normally wore myself out doing. They needed me to be present, enjoying them. So I would recommend that you sit down, and prioritize your "should" lists. What do you absolutely have to do? What can you absolutely eliminate? And rank the rest of the stuff on the list in between. Be ruthless, too. You are essential to the well-being of your family by being healthy and able to enjoy them — not because you of any specific activity that you may engage in.
in reply to: New DX Many Questions and Fears #1062430Hi, Cathy, and welcome to the board.
I think that most people — and I would guess that the percentage is extremely high — do the antithyroid drugs first. It is typical for the GP to initiate antithyroid drugs while we wait for an endo appointment. Remaining hyperthyroid is not a wise option. Some of us remain on the ATDs a very short time; others of us go for a year or more, trying for remission. The meds typically work immediately to interfere with the production of thyroid hormone, so taking them allows us a bit of breathing room as we analyze our realistic treatment options.
That said, it is possible that your numbers do not indicate hyperthyroidism. That is something no one here is qualified to determine. Your doctor can tell you that. If you are not hyperthyroid, your doctor would probably not want you to start antithyroid drugs.
There is a genetic predisposition to autoimmune diseases, and often there will be other members of the family who will have thyroid disease like we do, but it isn’t necessarily going to be Graves. If you are indeed diagnosed with Graves, though, having your daughter start monitoring her thyroid function during her annual physicals would be wise.
in reply to: So tired of this #1062438I’d like to chime in and reinforce Ski’s comment about taking the methimazole. Like you, I hated the side effect of the antithyroid drug I was on (PTU), so I do think I understand your disappointment right now at the prospect of having to go back on the drug once again. But the enemy is hyperthyroidism. Every day that you allow yourself to remain hyperthyroid is a day that your body is damaged. If a wee bit of methimazole prevents that, you are helping yourself in a huge way.
You may ultimately need either surgery or another RAI to remove what is left of your thyroid, but it is much too soon to tell. Please try to be patient –and, yes, I do know it is hard. But RAI is a process not an instantaneous event. You need to let it play out.
in reply to: Post RAI Side Effects #1062441Fatigue can plague you for a while because it is a component of both hyperthyroidism AND hypothyroidism. About one week (give or take) after you take the RAI, you will be at your most hyper for a few days, so you will feel more tired. As well as more of the hyper symptoms. The sore throat? I’m not sure how long that lasted. A week? Mine was so minor that I paid little attention to it. Someone else, newer to the process, may have a better memory of it than I do.
in reply to: oldmember returning to say thanks #1062463It’s really good to hear that things are going well for you now. And newcomers to the disease REALLY need this message.
Take good care,
in reply to: Over 60 years old and Cytomel #1062469The problem with cytomel (or any T3 product) is that it is instantly available to the cells, whether they "want" it or "need" it at that point in time. The half life of T3 is three-quarters of one day. So it is very short-lived. When you take the pill it gives you a rather instant boost, and then rapidly diminishes. In this respect it is a bit like diabetics who must take insulin. The insulin that they take is instantly available to the cells, whether they want or need it at that point in time, or not. And as a result, diabetics have a progressive erosion of their health over time. The insulin would be better if it were timed-release. Insulin pumps try to simulate the body’s production of insulin a bit better than taking it in shot form, but it still is instantly available, rather than available as the body needs it.
T4 products on the other hand, are in fact, timed-release. The body transforms them into T3 as needed, over time. This is the way the body worked prior to the removal of your thyroid. Only about 20% or so of the thyroid hormone created by thyroid cells was T3 — the rest was T4 which was transformed into T3 as needed.
You might argue — as many do — that therefore you should take cytomel-like products to better simulate the natural production of thyroid cells. But you are forgetting that not all of the hormone created by thyroid cells is released into the body all at once — much of it is stored for future use. So, even though 20% may have been T3, that 20% was likely to be released over time.
I have experience taking cytomel. Like you, there were reasons why I wanted –or thought I needed — the additional form of thyroid hormone. I was actually on half of the smallest dose of cytomel available. And, it adversely affected my heart over time. When I went off it, I was sure I would feel an instantaneous drop in energy: I did not. I continued to feel well.
in reply to: 2 weeks post RAI and still itching #1062504Well, the itching is likely due to the changes that being hyperthyroid causes with the skin, so using the moisturizing procedures I described might help. It is important to apply moisturizers to WET skin. They then hold the moisture against the skin long enough for some of it to be absorbed.
RAI takes a good month or more to "work" its magic. I went hypothyroid after five weeks. Some folks don’t go hypo for five months. It varies, unfortunately, and so it’s not something any of us can predict for you. Try to look for improvement, rather than any absolute sense of "normal." That will help you to be patient through the process. Also, "normal" levels don’t necessarily bring normal "feeling" right away. That is because we have to be at controlled levels of normal for months so that the body can heal. The body doesn’t begin to heal until normal levels are sustained.
in reply to: 2 weeks post RAI and still itching #1062502Well, "itching" isn’t a symptom that is associated with the RAI, typically, so I ‘m not sure how many helpful responses you are going to get.
I get itching from certain types of drugs, and it’s horrid when it happens, so I do sympathize with you. Usually, if you stop the drug, the itching subsides. So, you might consider if there’s any other drug that was added around the time of the RAI that might be responsible.
Many of us get very dry skin as a result of the hyperthyroid state, and if your itching is being caused by that, you might try using a rich moisturizing cream — even vaseline — over wet skin. This holds the moisture against the skin, and does alleviate the itching that dryness causes.
If the itching is on your lower legs, it might also be associated more with the Graves than with the RAI. I have had that along with my pretibial myxedema (a Graves added problem), and one of the things that helped there was to use a moisturizer and cover my lower legs with plastic wrap when I went to sleep at night. The plastic wrap helped the moisture to be absorbed into the skin better.
But if the itching is due to the RAI itself, you may have a much longer time to endure the problem. RAI has a half life of 8 days or so, so it takes at least a month, or slightly more, for it to dissipate from the body.
I do hope you find some relief soon.
in reply to: Stress Relief – What Works for You? #1062509A warm bath.
A walk in the sun
soothing musicmovies that make you laugh like:
"Jumping Jack Flash"
"Saving Grace" (British movie)
"Galaxy Quest"in reply to: Newly diagnosed..do not want to take propranolon #1062513I used the phrase "abnormally fast" in my first response deliberately. My normal resting heart rate might be 70. So, if I went in hyperthyroid and had a resting heart rate that was 80 that might not seem "fast", but it is about 14% faster than normal. And it might mean that for my own particular heart’s condition, it is "too fast." Many folks who exercise a lot have very low heart rates normally. But people who are currently in cardiac trouble — heart failure issues — could also have that same low heart rate, and it would not be healthy FOR THEM. So the number itself doesn’t necessarily mean a whole lot. It’s a comparison with normal that counts. And it has to take into consideration whether at the pace it is going, whether or not the heart is pumping efficiently.
in reply to: Newly diagnosed..do not want to take propranolon #1062511The best thing to do is talk with your doctor about it, and explain your reluctance, and ask WHY the drug was prescribed in your case. If you know the "why" it may make it easier to swallow the pill at the moment. Or, when the doctor finds out how you feel about taking medications, (s)he might say it isn’t necessary. But the problem is that you are now entering a long-term relationship with your doctor, and it helps in the long run for the doctor to trust you to be compliant with instructions. With that trust, when you go in, at some point (as we all tend to do) not feeling well, your doctor’s first thought will not be that you didn’t take the prescribed meds. (S)He will look for another reason.
I can tell you that in general, the propanolol is prescribed to protect the heart. Elevated levels of thyroid hormone make the heart beat abnormally fast (which — over time weakens the heart), and also interfere with the "electrical" system of the heart that keeps it beating in the proper rhythm. Arrythmias can occur, which are terribly dangerous. The propanolol has an additional "bonus" inasmuch as it helps to alleviate tremors, and also allow us to sleep a tad more until our thyroid hormone levels are back in the normal zone. So it helps us to "feel" better. But as to why YOUR doctor prescribed it for YOU, there may be other reasons, as well.
Wishing you better days soon.
in reply to: RAI or not? #1062522Hi, and welcome to the board.
I had my thyroid removed in 1996 via RAI, and I have not been made ill by thyroid hormone ever since. I am healthy. Many other folks here, whether they removed their thyroid via RAI or via surgery can tell you the same. There can be ups and downs, especially at first, getting to the right dose of replacement hormone. But removing your thyroid can be one very helpful way to find your way back to living a healthy life.
You do not need your thyroid to live. There are tens of thousands of individuals who live very well without their thyroids. It isn’t like a liver, or a heart, that needs to be transplanted. It is not like a diseased pancreas for which there is no good alternative. Our replacement hormone regimen, while not "perfect" is very, very close to our normal thyroid hormone product, and it works very well.
What you are seeing, when you read boards like ours are individuals who are currently ill. They are the people who are newly diagnosed, or who are going through those initial ups and downs of treatment. People who get well again, get back on with their lives and do NOT populate the illness boards online. Check it out. Go back six months or a year in the archives of this board and look at the postings. They look EXACTLY the same as they do now, but the people posting are DIFFERENT. Almost completely different. NGDF made the decision long ago to have moderators who had gotten well again as facilitators for this board, and for our local meetings. It is such a wise thing to do. Ski and Kimberly and I can give you that slightly different perspective on things — the "Wellness" side of the disease, that is typically missing from online boards. Ski and I did RAI. Kimberly is on antithyroid drugs. And others, did surgery.
We cannot tell you what to do. You need to decide that with your doctor. It’s a hard decision, no matter what. BUt I can tell you that our treatment options do work to make us healthy and well again — even if the option includes removing your thyroid.
Wishing you good luck and good health soon.
in reply to: Oh boy, here we go again.. #1062542I’m sorry you have to deal with hyper all over again. I hope you get good treatment, and soon, so that you are feeling better.
in reply to: Recently diagnosed with Graves Disease… #1062564Being emotionally unstable is huge when we are hyperthyroid. Do NOT trust your emotions to lead you to proper behavior. They are out of whack, and can disrupt what would normally be good relationships. Recognize that you are OVERreacting, and moderate your behavior whenever possible. It is not easy, but if you do keep in the forefront of your mind that you are overly emotional, you will be able to control you responses better.
We DO get well again. The treatment options — any of them — have been proven to control thyroid hormone levels and allow our bodies to heal over time. If you do not get treatment, however, you will get sicker and sicker and sicker. But there are two basic treatment options. The first is to take medication that interferes with the chemical reaction by which the thyroid takes iodine and makes thyroid hormone. Typically that means a medication called methimazole. The second option is to remove the thyroid, either chemically (RAI) or with surgery and then go on replacement hormone. That, too, has been demonstrated time and time again to help us to regain our health permanently.
The first step is usually to go on the meds. That gives you time to regain normal levels of hormone, and then to evaluate more objectively your other options.
I do hope you are feeling better soon.
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