Forum Replies Created
-
AuthorPosts
-
in reply to: Help! Labs came back today! #1061862
I would recommend calling your doctor’s office back, and asking them for a copy of the blood work. It may not make any difference whatsoever. But I was told long ago that I had "normal" blood work when in fact my thyroid panel showed that I was hyperthyroid. Obviously hyperthyroid. I don’t know how often this sort of thing might happen. Hopefully not often. But if you can actually see the results, it would be better.
in reply to: Dallas Area Endo recc please! #1061849The drug that your husband was put on (methimazole) starts working immediately to interfere with the production of thyroid hormone. But the thyroid not only makes hormone, it stores it for future needs. So until the stored supplies are used up, your husband will not feel much different, even though the drug is working. A week is not typically sufficient time to expect the drug to make any great difference unfortunately.
in reply to: Shingles Question #1062100Yes, there is a shingles vaccination. But it is a quasi-live virus injection. I think the technical word is "attenuated." Scientists weaken the virus but do not kill it completely. So, whether or not it is wise for someone who has shingles intermittently for years to add a weakened, but live virus to their system is a question for your doctors, not anyone here, or elsewhere online.
There is no connection, to my knowledge, between being hyperthyroid and developing shingles. It is not in any of my literature.
Another point: unless hyperthyroidism is currently making you ill, your immune system is not "weakened." We do not have a compromised immune system just because we have an autoimmune disease. Our immune system has made an antibody to thyroid tissue by mistake. But when antibody levels are high (healthy immune system) we are sicker; when antibody levels are low (illness, typically, but not always) our symptoms can go away.
in reply to: Young Woman with Graves’ (Getting Worse?) #1061924Having the earth move — literally — all the time is nerve wracking even without the additional aspect of having a disease. Some friends in the western part of the country (USA) experienced a month of very minor earth tremors a year or so ago, and they were wrecks, nerve-wise. This may be another B+ moment you need to think about in a new way. Instead of "I should be handling this better," it would be something like "I am nervous/anxious but who isn’t, and all things considered I’m doing really well!!"
I hope so any way.
in reply to: We’ll see update 5/24 Thyroid concern… #1061880I’m sorry you are feeling lousy again. Sending hugs…….
in reply to: New Member of the Graves Club #1061975Hi, Dave and welcome.
One word of caution for you (well maybe more than ONE…..): none of our treatment options works instantly (or even close to instantly) to bring us back to feeling normal. The antithyroid med you were put on starts immediately to interfere with the amount of thyroid hormone that is being produced. But the thyroid cells not only make hormone, they also store it for future needs. The stored supplies will continue to be released until they are used up. Then, your doctor will most likely have to adjust the dose of the ATD to get just the right amount. If you take too little you will stay hyperthyroid; if you take too much you will become hypothyroid. Finally, it takes months AT normal levels of hormone for our bodies to heal from the damage caused by too much thyroid hormone. How long it takes will depend upon how long you were hyper before being diagnosed. So, try to be patient with the meds your doctor puts you on. If you feel you have a problem with one or more of them, do not tinker on your own: talk with the doctor first. Some of the meds have to be stopped slowly, or there will be adverse side effects. Some of them require that we take them a certain amount of time as directed, in order to be able to tell how well they are working from blood tests. If we tinker on our own, we can increase the length of time it takes for us to feel well again.
As to folks posting negative comments about any of our treatment options — we need to recognize that the web is a source of both good and bad information. Discerning the difference can be difficult. There was a study done a few years ago that suggested that about 80% of medical information on the web was either out-dated, wrong, or dangerous (or, possibly all of the above). Pay attention to the websites from which you draw your data. Some are worthier of listening to than others. And, as far as any of the bulletin boards (including ours) goes, you need to understand that the folks currently posting are usually the newly diagnosed, or the minority of people who have encountered adverse side effects of one type or another. The people — and they are by far the majority — who get treated and get well again do not tend to populate online disease boards on a daily basis. So what you read is skewed towards disease, not health. This board is somewhat different because a decision was made long ago to have people who have gotten well again "moderate" the board. For this board currently that means me (RAI), Ski (RAI), Kimberly (ATDs) and, sometimes James (ATDs).
In general, ALL of our treatment options are vastly safer than remaining hyperthyroid.
Of the facilitators here currently, Ski and I have done RAI successfully. (Although it took two tries with Ski because of mixup between endo and nuclear med doc over the required dose.) Kimberly and James have been on the ATDs long term and seem happy with their choice.
The key with the meds is that they control the levels of thyroid hormone. If they do that, without side effect issues, fine. But if someone is not well-controlled on the meds, or if there are side effects, then typically RAI is suggested (and sometimes strongly), which may be what’s going on in your case.
Shirley and a couple of others who post here on and off chose surgical removal. You can search through the posts for their comments if you want.
in reply to: TED post RAI #1061892I had some seriously puffy eyes when I went hypothyroid after RAI. If your eyes feel like their vision is constricted due to the puffiness, it may be edema of some type which will go away over time. With the eye disease we get soft-tissue being pushed forward as the eye muscles get larger, so it looks a bit swollen, as well. It is hard to tell the difference unless you give it time to settle out (edema).
in reply to: Young Woman with Graves’ (Getting Worse?) #1061916Hi, and welcome.
Inasmuch as our disease is caused by antibody action, and the antithyroid drugs do NOT affect those antibodies, if our antibody levels rise (as they are known to do from time to time — especially when we are encountering major life stress situations) our symptoms will worsen. So, the short answer is that it’s possible your body is producing more antibodies right now, and that you would, therefore, need to adjust the carbamazole dose to regain normal levels of hormone. Antibody levels are known to rise and fall for no good reason. But stress is known to cause an immune system response, so they typically do rise when we are under major stress.
It is also possible that what you feel is stress pure and simple. Although it’s likely not that simple. But it could be. Even folks without GD get anxious, jittery, etc. when confronted with massive natural disasters. The good news, I guess, is that a blood test will show if your thyroid levels have gone wonky again (because of the antibodies). After that, it might be a simple fix to get those levels back to "right" again for a while.
I do wish you all in Christchurch a speedy recovery from the earthquake. If that’s possible. I lived through a natural disaster myself long ago (Hurricane Andrew in Florida), and it’s awful when everything around is turned to rubble.
in reply to: This is ruining our Marriage #1061902My heart goes out to you. What a difficult situation you find yourself in right now!
I certainly don’t have any answers for you. And, as you have discovered, doctors have different opinions, as well. (I.e., yes it’s GD related, no, it’s not GD related.) I will say this, however: Just because someone has Graves Disease, it does not mean that every other health issue that springs up is related. We can, and do, have people who suffer from depression, who would probably have suffered from depression even without the Graves. And Depression, even all by itself, is a horrible disease. One of my family members died because of it – and it had nothing to do with thyroid issues. You might find a book titled "Darkness Visible" enlightening. I believe the author was William Styron, the novelist. But this book is about his personal battle with Depression. His writing skills helped me to understand just how awful true Depression is, and how little I understood of it.
It might also help you to seek counseling for yourself. I did that when my relative was going wonky with Depression, because her disease was impacting on all of us, myself included. I needed to keep my head clear for myself, as well as for her. While you might not be able to fix things for your wife, you may be able to improve things for yourself, and by extension, for your son.
I do wish you good luck.
Hi, and welcome to our forum.
First off, our RAI treatment is not "dangerous," except in relation to the degree of health damage already caused by being hyperthyroid. So, in some of us, it might not be advisable. But for a lot of us, it is a reasonable treatment path back to health.Obviously, I131 in uncontrolled amounts can have adverse health consequences. But since doctors started using it to remove bad thyroids –fifty or sixty years ago — the science community has run study after study to determine whether there are long-term adverse consequences from using small, measured amounts of it. (Which is what we get.) Specifically, they’ve looked for cancers. But there was also a study a few years ago looking at death certificates of tens of thousands of folks who had had RAI , looking to find any statistically relevant causes of death that could be attributed to RAI. In that study the researchers determined that the primary elevated causes of death in those death certificates were because the individuals had suffered from hyperthyroidism, not that they had experienced the RAI treatment.
Typically, our endos do offer us the option of trying the antithyroid drugs first. While these drugs do not cure hyperthyroidism, they have a reasonable track record of controlling it in most patients. And, some of us do experience remissions after being on the ATDs for a while. (About 20-30% of us experience at least one remission — defined as being symptom free, without drugs, for a period of a year or longer.) There are, however, side effect issues to consider with these drugs.
Some of us also choose to remove our thyroids surgically with thyroidectomy.
I assume you have discussed these other potential treatment options with your doctor. But if you have not, you might ask your doctor why the emphasis on RAI. There can be logical medically based reasons for "pushing" any of the treatment options, but you need to feel comfortable with the decision.
What you should not do, however, is dither with no treatment for the excessive levels of thyroid. If you are on the drugs currently, that will allow you time to decide if you want RAI or not. If you are not on the antithyroid drugs, however, you cannot afford to put off a treatment decision for very long. Hyperthyroidism is far more dangerous to our long-term health than any of our treatment options.
in reply to: Alternative options? #1061926First of all, Happy Mother’s Day! You sound like you have your hands really full right now with babies. And you’ve been handed another issue — Graves. That’s hard, I know.
Hyperthyroidism is potentially lethal. In the days before our current options — however limited you find them — approximately 50% of people with Graves hyperthyroidism died. Those who survived did not necessarily have their health. Many of them were invalids. So, you absolutely must make a choice between the options we have for treatment. Our treatment options give us back our health in the vast majority of cases. And your health is crucial to the happiness of your children, too. There are two major treatment options that have been proven, time after time, to return us to health if we catch our hyperthyroidism soon enough.
One option is to try to control the hyperthyroidism with drugs. The side effect issues for these drugs can include liver impairment, low white cell count, and other somewhat less serious issues, but these side effects are rare. 5% or less of patients who use the antithyroid drugs suffer these side effects — if I remember my data correctly. There are a few issues regarding the antithyroid drugs that you need to explore if you are breast-feeding. Methimazole will cross in some percentage or other in your breast milk. Whether it is safe for your baby, or not, depends upon how high a dose of the drug you need to keep you from being hyperthyroid. (And, remember, you have no choice but to treat your hyperthyroidism.) So you need to talk with your doctors, and your babies’ pediatrician if you are breast feeding.
The other option is to remove the thyroid, which would require you to go on replacement hormone. There are two ways to remove your thyroid. By far the most common is — as your doctor recommended — RAI. It involves no hospitalization, but it does require you to spend a week away from your babies. I remember how hard it was for me to contemplate a four day vacation away from one baby, when I was a new mom. I know this is not a decision that would be easy to make. But, my baby survived her stay with her loving Grandma, and if you have someone like that who could watch your babies, they would survive well, also. The other way to remove the thyroid, which is becoming somewhat more common lately, is surgical removal. This involves at minimum a day of hospitalization, and has a couple of side effect possibilities. The normal adverse side effects of surgical procedures (like infection, etc.) are there. Plus there is the possibility of damaging your parathyroids, and the nerve which operates the vocal chords. These side effects are not common, if you use a well-qualified surgeon who does lots of thyroidectomies and has a good track record of low rates of complications.
Replacement hormone – which we typically have to use after either RAI or surgery — IS thyroid hormone. So the only side effect issues with it have to do with whether or not you are getting the appropriate dose. Too big a dose, and you will be hyperthyroid again; too little and you will be hypothyroid. But since it "is" thyroid hormone, there are no side effect issues with respect to breast-feeding, if that is a concern.
I recommend that you talk with your doctors, and make up a list of pros and cons for each of the options. Try to be as OBjective as possible. You can consider fears etc. last, but try to be rational and objective when you list the pros and cons. If your endo has told you of health issues that might interfere with you doing one option (like surgery, for example), take those health issue concerns VERY seriously. While it is possible for us to overrule our doctors and choose an option that we have been advised against, it isn’t something to do lightly because we will be spending the rest of our lives with the potential consequences. And, after mulling things over for a few days or so, make you mind up, and go for it. That’s really what we’ve all done here. We’ve made our best effort to make a good choice for ourselves, and we’ve moved forward. And, the majority of us have gotten well again, and gone on with our lives.
I do wish you good luck with your decision.
in reply to: vitamin suggestions #1061947I’d double check the Vitamin D recommendation — although it sounds like you may have just started, and that may make it OK. But Vitamin D supplementation became all the rage a year or two ago. My GP put me on 50,000 units for a while, to bring my levels up to what was newly recommended at the time. My maintainance dose was to be 4000 units. Then I started reading information to the contrary and asked my doctor about it, and she said that, yes, the recommendations had been LOWERED since I had started on the stuff last summer. Vitamin D is one of the vitamins we are warned about. Unlike water soluble vitamins, that we simply eliminate in our urine if we take too much, D can build up in the body. And if it does, it isn’t good for us. So make sure your levels are being checked periodically.
Warning about vitamins and mineral supplements: If you are on replacement hormone, you must allow a minimum of FOUR HOURS between your replacement pill and your vitamins etc.
in reply to: New Graves Diagnosis #1062120First off, being hyperthyroid makes us very tired over time. When the methimazole interferes with the ability of the thyroid to make hormone, it should bring your levels back to normal, or even(hopefully not) into hypothyroid territory. We cannot sleep well while hyperthyroid. So, it’s possible that this "side effect" you have noticed is simply the ability of your body to sleep again because the drug has lowered you thyroid hormone levels.
in reply to: New and have many questions #1062168Muscle starts to come back when we regain normal, controlled levels of thyroid hormone. It is "baby," mushy muscle, if you will, and needs to be strengthened, but you can regain your strength — or at least a lot of it — if you are careful. One thing you will need to make sure of, is that your trainer re-evaluates your level of fitness, and doesn’t just whoosh in and try to rush things. I had a trainer who did evaluate my condition. According to him, I had 8% (yes, eight percent) of normal strength by the time I was able to start exercising again. It does come back. But we have to work at it, and we have to be smart about how we work, otherwise we s can set ourselves back with strains, sprains and shin splints.
-
AuthorPosts
