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in reply to: Hi, everyone! I’m the new facilitator. #1069067
Welcome, Ellen. It will be good to have you helping.
in reply to: Hi! New to the site and would like advice #1069046Hi, buckeye. Congradulations on starting college! It should be a great adventure for you.
I have been "living with" Graves disease for the past 12 years. What it amounts to (for the past 11 or so years) is taking a single pill every morning, and getting my blood tested for thyroid hormone levels about once a year. I had RAI as a treatment. So, you see, living with Graves can be very simple. We are very lucky, I think, to have a replacement hormone that works like our body’s own T4. It works much better for us than insulin injections do for diabetics, because it is released into an appropriate form (T3) as the body needs it.
I suppose I shouldn’t over-simplify my situation: I also had pretibial myxedema and I developed the eye disease. Both of those conditions were added complications. But I am not plagued by them any more. And most people don’t develop either of those two complications.
So, I think you should be aware that complications can occur, but you should expect to get well again. You can expect to have your thyroid levels monitored from time to time (at least once a year). And you should expect that if you ever become pregnant, that your levels will have to be watched even more frequently, because pregnancy can put demands for more or less hormone over time.
Do cut yourself a bit of slack for the first month or so after your RAI treatment. It takes time for RAI to work, and it takes time to find the right dose of replacement hormone for you. During that time, your body still won’t be "normal." But once you do get to the proper dose, and your body has had a chance to heal, you can expect health to return.
Wishing you good luck, and good health soon.
in reply to: Another new person. #1069050Hi, M., and welcome to the board.
First off, I’m sorry you’ve been having such a rough time. Please know that we do get healthy again with appropriate treatment for Graves. It can take a while, but health is what you should expect.
I wanted to respond to your reluctance to take your levothroid all the time because of your other medications. The replacement hormone that you are on is chemically identical to your body’s own thyroxin (T4). Your body will use it in precisely the same fashion as it use(d/s) T4 manufactured by the thyroid cells. In other words, your body is designed to use this chemical, and the only side effect issues you will incur from using it occur if you use too much of it (you will become hyperthyroid with all the appropriate symptoms) or too little of it (you become hypothyroid–ditto). In that respect, it is unlike every other drug that you are taking, and perhaps it would help if you to stop thinking of it as a "drug." It is not a foreign substance being introduced–rather it is something your body normally uses. You need this medication to keep your body working properly, and your doctor needs to be able to tell how appropriate your dose is by you taking it consistently. Take it first thing in the morning, on an empty stomach, with plenty of water, and wait a while before eating anything or taking other medications.
I do hope you are feeling much better, and soon.
in reply to: Confused on how GD effects me now ? #1069202The main thing that the Graves antibodies are known to do is attach to the thyroid cells and stimulate over-production of thyroid hormone. This over-production of thyroid is what makes us ill. Once that is under control, we regain our health (except in those rarer cases where the excessive levels of thyroid hormone have gone on too long and triggered other problems, like heart disease, etc.). Therefore, since your thyroid has been removed, and you have gone hypothyroid, the main issue you face going forward is keeping your thyroid hormone levels within the normal zone via replacement. You must be checked periodically to make sure that whatever dose you are on is at the correct level. Odds are, your replacement dose will remain fairly constant, BUT….(Isn’t there always a "but?") If any thyroid cells are left in your body, there can be fluctuations in thyroid function, either up or down, over the years, and these fluctuations might necessitate a change in your replacement dose. The goal of both RAI and thyroidectomy is to remove enough thyroid tissue so that these fluctuations will be minor. But occasionally they can cause a change in your replacement dose. I had my RAI 12 1/2 years ago, and I have had some fluctuations — but none of them made me ill again.
Wishing you good health,
in reply to: Voice recovery after operation #1069272Hi — I’m glad you have come through the surgery and are on the way to better health.
One of the potential side effects of the thyroidectomy, though, is damage to the nerve that runs to the vocal cords (and not necessarily damage to the cords themselves). Whether that has happened to you, or not, is something your doctor can weigh in on. Asking a doctor you trust about the issue might give you information about how to cope with it so that you don’t make things worse while your throat is healing.
in reply to: Help ! Work Issues from Eye Issues #1069282I think before you try for any disability rating that you discuss your situation more completely with your opthamologist. It may be that your condition is mostly associated with the dry eyes that plague us as a result of having thyroid disease, in which case getting the plugs might eliminate, or minimize, your problems.
From what I understand, thyroid disease –for whatever reason — causes our tears to become more watery than normal tears. Normal tears have the ability to sit on the eye for long periods of time, lubricating them. Our tears become thin and run out of the eye very quickly, and even though we are more aware of having lots of tears, they are not staying on the eye long enough to lubricate. The plugs keep the tears on the eyes longer. I did not have to get them, but perhaps some of the folks who did will respond to you and tell you about it.
There may also be some things you can do to change the environment in your work space to alleviate the discomfort. There are ways to minimize the glare from the screen, for example, that is easier on our eyes. You might be able to change the lighting at your desk, etc. We have had information sessions about this topic at NGDF conferences, and it may be collected in one of the information sheets available from NGDF, but I cannot give you precise directions on how to find it. I’ll write one of the moderators who may know and see if they can give you that information. And your opthamologist may be able to give you information about how to change your computer, etc., as well. We often can cope pretty well with some adjustments to the environment.
in reply to: Swine Flu effects on Graves #1069277This issue is a complicated one. Our immune system is not automatically compromised simply because we "have" Graves. Our immune system has made a mistake: it has created an antibody to our own thyroid. But the rest of the immune system can be working just fine.
That said, if your Graves is not well-controlled, if it is currently making you ill, and weak, then you are more likely to be susceptible to the germs in the environment and should take greater precautions.
So the issue really is where you are in your treatment plan. Since most of you are new to the disease, and may currently be ill from it, then you need to be aware that you are likely to be more susceptible to swine flu or anything else that is running through the environment around you.
in reply to: double vision #1070082Yes, I had double vision as a part of TED, and it went away without steroids or surgery. I still get it when I am particularly fatigued, but it is no longer a common occurance.
Our doctors weigh the risks of steroids and surgery against the knowledge that once the active phase of TED is over there is, typically, a remitting of symptoms. How much symptoms remit depends in large part on how much damage was done while TED was in the active phase. So that is why ophthamologists tend to wait, and watch, even though it can be maddening for those of us who are experiencing the changes and are scared of the potential problems. I sought a second opinion part way through my experience, just to make sure that waiting was the appropriate choice.
Bobbi — Online Faciliator
in reply to: PTU Induced Hepatitis #1074340I am glad to hear that your liver is recovering from the problem created by PTU. Methimazole carries the same type of risks as does the PTU. It is a different chemical, but it also has the known side effect possibility of liver damage. It is not common for either PTU or methimazole to cause liver damage, but it is common enough to make the side effects lists, and for our doctors to monitor liver function while we are on the drugs.
I work in a local not-for-profit with two women who have had thyroid cancer and had their thyroids completely, utterly and totally removed via surgery and RAI. They live healthy lives. I had my thyroid removed via RAI. I, too, have regained my heatlh. The liver is an essential organ — we cannot live without a liver. We can live without a thyroid.
in reply to: Surgery, Change of heart :( #1074562I don’t know where you got your information, Caira, but it was wrong. Many people with thyroid cancer have their thyroids surgically removed, and usually they need follow up radiation treatment. But the surgery does not cause the cancer.
in reply to: How can I be more supportive? #1074351Since she has to take the meds three times a day, it seems she is probably on PTU. There is another antithyroid drug called methimazole (brand name Tapazole) which usually only needs to be taken once a day. You might consider asking the endo whether a switch to the other drug would be appropriate, given your doubts about compliance.
Stress does add to issues, typically. And we have seen lots of people throughout the years of this board using anti-depressant type drugs to help them through the difficulties. Those are, however, most effectively administered by psychiatrists. You need to have someone who can carefully evaluate the impact of the suggested medication on the diabetes medications, and the thyroid drugs. It is not necessarily a simple issue. And, it is entirely possible that simply getting the thyroid well and truly under control would be the most helpful first step.
One additional thought comes to mind. I was reminded a few minutes ago about what I consider the psychological "pathology" of adolescence — i.e. that they tend not to have good perspective. They think that what "is" is permanent, without being able to put things into a broader context. So, one thing that you might be able to do to help your daughter through this rough patch is to let her know that you realize the disease is making her feel very sick indeed, but that she got through it once and got well again, and that one way or another, there IS a way for her to get through it this time, too, and get back to health. She may need some fairly constant reminding that despite the fact that hyperthyroidism makes us very sick indeed, it is very treatable.
in reply to: Will this always be a roller coaster ride? #1074364One thing you should remember when you are reading boards like ours, though, is that it is dominated by people who are ill, not people who are well. So the input is a bit skewed in favor of more problems than the ultimate outcome will contain. I used to tell people to go back into the archives of the board and look at the posts during one period of time– then to go back six months and look at the posts there. The names would change, the stories would be the same. People who have gotten well (except perhaps for Ski and I) do not spend their time reading and contributing to these boards.
There are pros and cons to the treatment options, and what is wise for one patient to do may not be wise for another patient. In addition, getting someone’s advice from a board like this is not particularly wise. Your son’s doctor is going to be your best source of advice. We can help you with terminology, or any concepts that you find confusing. But we are truly not qualified to weigh in with advice, because we are not doctors, and we have no first-hand knowledge of your son’s medical condition. You need experts, not amateurs.
Please know that Graves is a very treatable condition. You should expect your son to get well again, and enjoy good health. If one option does not work, another one is likely to. The main enemy you should be focussed on is hyperthyroidism. All of our treatment options are safer than remaining hyperthyroid.
in reply to: How can I be more supportive? #1074347My heart goes out to you: it is difficult enough to deal with this disease as a patient; having an adolescent daughter with these huge problems has to be equally as hard.
I’m not sure what you can do at this point. A second opinion is always a possibility, if only to set your mind at ease. Is your daughter compliant about the meds — taking them as prescribed? It is unusual for the meds not to work to control thyroid hormone production. If your daughter is taking them as prescribed, then doing something else is absolutely required. Hyperthyroidism, left undertreated, will ruin her long-term health.
If she is not cooperative with you, you might want to consider getting an outside counselor to work with her. Sometimes our children will listen more to someone else, than they will to us.
in reply to: What took me so long? #1074499Hi, Russell:
The rationale for using block and replace twelve years ago (when I was first diagnosed) was based on a Japanese study that showed huge improvement in remission rates. Despite the efforts of scientists to duplicate the results of that study in other countries, they were not able to do so at the time I was going through things. So the treatment tactic was not universally accepted by doctors. It is still used in pediatric cases of Graves, I know, and it has proponents in other places as well. The idea is to totally suppress thyroid function by using the ATD, and then replace it with replacement hormone. So, my question: if you are totally suppressing thyroid hormone production and replacing it with replacement hormone, why are you doing it? With what purpose? Significant numbers of patients with remission was the point — at least ten to twelve years ago — but that proved not to be true. In your case you want consistency. And I can see why blocking thyroid production might do that for you, but could not the same thing be achieved by removing the thyroid without running the risk of high doses of a drug? If you are blocking thyroid hormone production, you do not have normal thyroid function, normal thyroid hormones being produced. For me, I don’t get it. Obviously, a topic for your doctor.
A second line of discussion with your doctor would be the frequency of your blood tests. My own endo, who is very good, allows her patients to have blood tests whenever they want, but cautions us strongly against too frequent tests stating that the results were less likely to produce consistency of replacement hormone doses. (Obviously, a difference between you and I — but it might still have the same effect, which is why I suggest you talk with the doctor.) The reasoning was this: that since TSH moves more slowly than actual thyroid hormone levels, you would "catch" the TSH before it had totally adjusted to a new dose of replacement hormone. So, if you raised the dose at that point, then you would be over-dosing and the next time you took a blood test, you would find the levels too high. And you would have to lower your dose. ETc. In other words, a hormonal yo-yo, much like you are describing now. My endo recommends six weeks to three months between blood tests. Six weeks is the minimum if something seems "off." AT first, I was unwilling to wait through symptoms that I found problematic. But I learned — the hard way, of course — that doing things too quickly did not produce optimal results (i.e. I went very hyperthyroid again).
Third: there is the issue of outliers and whether or not we base our treatment decisions on their experiences. Outliers are people for whom standard treatments do not work well. They are not the norm. Every single medical treatment has outliers. I was petrified of having gall bladder surgery because of a well-reported case of a famous person dying as a result of the surgery (pulmonary embolism). Yes, embolisms can occur after surgery; no, they do not happen all the time. So, how do you base your decision? Nobody wants to be the person who dies or has less than optimal results from a treatment. I know many people who have had their thyroids removed, and they do not have issues with replacement hormone once the initial phase of regulating the dose is over.
I think our doctors are the best resource for telling us what their experiences have been with respect to various treatments. Second opinions give us a broader range of insight into what to expect. They cannot tell us what "will" happen, but they certainly can tell us whether something is likely to happen or not. And because your doctor has worked with you for many, many years, he/she is going to have the best "guess" as to whether or not any specific treatment is likely to give you the results you seek.
in reply to: Antibodies after RAI? #1074368Actually, there is a rare occurrance possible of fetal/neonatal hyperthyroidism when the mother has Graves, and it is due, as I understand things, to the transplacental transfer of the mother’s antibodies into the baby’s blood. The baby does not "have" Graves, because he/she is not producing the antithyroid immunoglobulins (sp?) itself. So once they have been filtered out of the baby’s body the baby’s thyroid function returns to normal.
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