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in reply to: Employment #1172426
Some — a small bit, but some — of the fatigue we feel when we cannot sleep at night is psychological, due to knowing that we haven’t slept during the night. It helped me a bit when I found out that just resting, with my eyes shut, is about 75% as “restful” as full sleep. So your tactic lately, to stay in bed, is a good one. It isn’t perfect, but it’s good. The problem is that our bodies are revving 24/7 at an abnormal metabolic rate. It isn’t “just” the fact that you cannot sleep which makes y ou tired. Being hyperthyroid makes us very, very tired.
in reply to: Future weight gain? #1171604Do not freak out about the number on the scale. If the clothes are still fitting fine, it means your weight gain is likely to be muscle, not flab. Muscle weighs more than other body tissues, but it burns more calories — even at rest — than the others do, so having muscle weight is good weight.
in reply to: RAI coming up…what to expect?? #1172550Hi, Kindergal, and welcome to our board.
The precautions that we are given after RAI are to protect those around us from unnecessary radiation exposure. It is the type of thing that causes the dental technician to leave the room, or go behind a shield of some sort, before turning on the xray machine. Radiation exposures are cumulative through our lifetimes, so avoiding unnecessary exposures — however slight– can prove to be important over time.
The precautions you will be given may vary from those others of us have been given — or that you have read about online. It depends upon how large a dose of RAI you receive. If you were looking at any boards that included thyroid cancer patients, their recommendations tend to be significantly different from ours, because they get a much, much larger dose of RAI than we do. Anyway, you should pay attention to the instructions you are given. I can give you a general idea of the “why” behind the instructions, but I don’t know what your specific instructions will be.
RAI is very soluble in water. What this means is that any RAI that does not get taken into your thyroid cells within the first 24 hours or so, will be excreted from your body within two or three days via urine, sweat or saliva. Because of this reality, we are advised to double flush the toilet, sometimes use disposible eating utensils for a couple of days, double wash sheets, etc. The recommendation that you received for three days of relative isolation has to do with this issue. After three days — and perhaps even before that time frame is over — you will no longer be putting RAI back into the environment.
Other types of precautions have to do with the radiation that is contained in the thyroid, which is around a bit longer. We are advised not to hold small children or small pets against our neck area for a week or so. (Again, pay attention to your specific instructions.) Radioactive elements “lives” are measured in half-life terms. After one half-life the element has lost half of its radioactivity. Arbitrarily, after five half-lives it is considered essentially gone because such a wee amount remains. I131 — the treatment form of RAI — has a half-life of 8.1 days. So after 8 days, half of the dose that made it into your thyroid is left. After 40.5 days, it is essentially gone.
Keep in mind that the radiation you experience will be more than anything that you might inadvertantly expose your family to, and that even that amount of radiation has not been shown to harm US in the long term. Take your precautions, but don’t make yourself crazy if your child runs up and wants a quick hug after a week, in other words.
As to how you will feel 9 or 10 days out. The true answer will be ” really hyper.” Thyroid cells not only make hormone, they store it for future use. As the RAI damages/kills thyroid cells the cells released their stored supplies of hormone. And while the damaged cells will not be making new hormone, they will dump their stored hormone all at once. This tends to happen approximately one week after RAI — give or take. So we are more hyper than normal then, for a few days. The most potent form of thyroid hormone (T3), which accounts for about 20% of the hormone production of the thyroid cells, has a half-life of three-quarters of one day. So, when the T3 is dumped we feel horridly hyper. The dumped T4, which must be converted by the body into T3, takes longer to wear off, but isn’t as immediately potent. Sometimes, our endos try to counteract this effect by prescribing an increased dose of beta blocker. Sometimes, they tell us to resume the ATD (like PTU or methimazole) for a while. You could ask your doctor about that.
Please understand that you won’t be back to normal again for a while and try to plan for it. We need time at normal levels of thyroid hormone for our bodies to heal from the mess that being hyperthyroid made. So, you likely will not be thinking as clearly as you normally would 9 or 10 days out. Knowing this, you may be able to use the five days you’ve scheduled for R&R to go through lists, or otherwise try to plan ways to cut yourself a bit more slack. Do not assume that you will be physically able to take care of everything like you normally do. Do you have people to whom you can assign tasks? For sure, you need to prioritize, especially on the home front. Frozen dinners work. Small children may think it is actually fun, to help you run the wash. And dust can accumulate for a few days. Do give yourself as big a break as you can.
I hope you are feeling much better soon. Good luck with the RAI.
in reply to: Latest labs #1172535Hi, emmtee:
I guess I wasn’t completely clear. I wasn’t trying to “interpret” your lab results by saying they were “abnormal.” Sometimes I have had individual lab results that were somewhat outside of the normal range, i.e. abnormal, and my doctor told me that it wasn’t really a problem. Other times, however, the results have been outside of normal, and my doctor felt it was indeed a problem, even if they are only slightly “off.” I suspect it involves the “whole person” issue. What is going on? What are the symptoms? What is being treated, and what are the side effect issues of those treatments? Just looking at lab numbers in isolation may not give an adequate picture for making an interpretation.
in reply to: Latest labs #1172530One thing to keep in mind, emmtee, is that the range of normal for any of the items on a blood test list is determined by the specific lab involved. The way one lab does the testing–the materials used, etc.–can give it a different range of normal than that of another lab using different techniques or materials. So going online and finding a different range of normal doesn’t make your test results normal. For the lab you used, your results are abnormal.
It isn’t unusual for us to get muscle cramps at this stage of treatments. Hyper levels of thyroid hormone are bad for our muscles. And your GP’s advice was good advice. I got a lot of help from the cramping by doing gentle stretching exercises throughout the day. It helped to “work” my muscles before they were strong enough to tolerate exercise, and it alleviated some of the tightness and cramping. Just be sure that you don’t “bounce” when you stretch. Bouncing will stress the muscle, not relax it. And if you get a cramp in your calf, stretch out the muscles by extending the leg and heel.
in reply to: GD and breastfeeding #1172522Having breast fed my babies long ago, I understand completely what you are saying. But there are some issues that you need to confront directly.
The reality is that some mothers in the U.S. do breast feed their babies while on one of the antithyroid meds. I believe in Australia the drug you use is called carbamazole, which is similar to something we call methimazole here. If this is the drug you have been prescribed, it is considered a Class D drug in the U.S., which means that it does cross through to the baby in breast milk. The issue is what dose of the medication the mother is on. It is thought that if the mother is on a dose of 20 mg or less a day, that it is safe for the baby to continue breastfeeding. The recommendation I read is to wait until after nursing the baby to take the medication, in the morning to try to minimize the dose. But of course you will be nursing the baby throughout the day, so I’m not sure how that recommendation plays out. There is no evidence that the drug is safe for the baby if the mother is on a higher dose than that, so the recommendation then becomes that the mother stop breastfeeding.
The second reality is that you must treat your disease. You cannot even begin to think about letting treatment go — even for a little while — in order to continue breastfeeding. Complications of the condition can be life threatening. It is VERY treatable. We do get well again, with our treatments. But left untreated, it can be lethal. Your baby needs a healthy mother.
So, of course you don’t want to stop breastfeeding, but it might be the wisest and most loving thing you could do, if you need a bigger dose of the medication than is safe for your son.
in reply to: thyroid and eye disease #1172295Shirley, I just saw the question you directed to me a few days ago. Life has been a bit chaotic recently, and I have missed a few posts.
Anyway, I think it was my regular opthamologist who did the field of vision testing on me, a year or so into my TED experience. He also ran a …sonogram I think it was … of the eye muscles. The Oculoplastic surgeon did measurements, etc., and used the data from the opthamologist’s tests.
in reply to: Suffering from GD #1172515Tens of thousands of people, over the decades since the 1960s or so, have had RAI treatment, and gotten well again. A study done in the UK, looking at the death certificates of approximately 35,000 people who had had RAI, determined that the RAI was not the influencing factor in their causes of death. In other words, medical conditions associated with the radiation were not statistically higher except in minor ways in a distinct minority of the population studied. On the contrary, causes of death tended to look like they were more linked to the problems caused by being hyperthyroid — broken hips due to osteoporosis, and things like that.
I know that there are people who consider it their mission to terrify patients away from RAI. They may have had a bad experience. Name one medical intervention that doesn’t have occasional bad experiences. But there are lots and lots of us who did RAI and got well again. I am one of them. My mother had RAI about 25 years before me, and she, too, got well again, living 30+ years longer, and dying of something utterly unrelated to thyroid disease or radiation treatment.
The main thing to remember when you read boards like ours online, is that they tend to be populated by people who are ill. Generally, that means that people who are new to the disease and feeling utterly rotten are posting their problems, looking for support. Some of the people have complications to their treatment, like TED, and are feeling rotten and looking for support. Typically, you do not see people who have had treatments, and gotten well again. Those folks usually do not spend an hour or so a day reading the board, and responding to questions. We here at GDATF try to keep healthy people on as facilitators in order to provide the healthy perspective to the disease. If you want to check me out on these comments, do a search of our archives. Go back a year or more and read a few pages of posts. You will find that the stories are exactly the same as now. The questions are exactly the same as now. But the names of the people posting will be very different. Except for the facilitators.
Essentially, there are two main treatment options for Graves hyperthyroidism. The first, ATDs, has been ruled out by your doctor. So now you have to look at removal of your thyroid. We can live well without our thyroids, but we cannot live at all without our liver. Removal can be done either by RAI or surgery (thyroidectomy). All treatment options have potential adverse side effects, and it can be helpful to understand them. But please know that all of our options are — in general — much, much safer than remaining hyperthyroid.
I do hope you are feeling better soon.
How frustrating for you! Is you endo looking only at TSH levels? If so, it might be constructive to have a full thyroid panel done, including the levels of free T3 and T4. But if the full panels are being done, I wouldn’t know what to suggest. Typically, the key to problems like yours involve taking other medications too soon. The only thing that might make a difference — theoretically — is if you are taking supplements — like vitamins and calcium — too close in time to your thyroid replacement pill. My pharmacist told me I needed to wait a minimum of four HOURS for those.
in reply to: Just Diagnosed!!! And Scared! #1172474Please do NOT exercise without the express knowledge and approval of your doctor, Lil Red. Being hyperthyroid saps our muscle strength (it actually causes us to lose muscle), and it overworks the heart. A slow walk put my heart rate into the “aerobic workout zone” when I was hyperthyroid. It’s not good to push it. This is only temporary, but it is typically a precaution that we have to take until our thyroid levels are normalized, and our bodies have started to heal.
in reply to: Fetal graves disease? #1172467Sometimes, mothers who have had Graves’-induced hyperthyroidism, deliver babies that are hyperthyroid temporarily. The antibodies that cause the thyroid to over-produce hormone can pass through the placenta into the baby, causing the baby’s thyroid to over-produce hormone. Since this is due to the mother’s antibodies, and not the baby’s own antibodies, the condition is usually short-lived. But the babies do need special treatment. It sounds like your doctors on top of the situation, and preparing for that (albeit unlikely) eventuality.
in reply to: Just Diagnosed!!! And Scared! #1172469Hi, Lil Red, and welcome to our board.
It can take a while to get our thyroid levels back to controlled normal. And sometimes the antibody levels will change for no well-understood reason, and adjustments will need to be made in the meds (while you retain a thyroid). That said, once we have normal, controlled levels of thyroid hormone, our bodies begin to heal, and over time we get back to feeling ourselves. We have a disease that makes us very sick, but is very treatable.
I hope you are feeling much better, and soon.
in reply to: Surgery or RAI #1172438Our doctors weigh the known possibility of side effects and try to evaluate which they think is safEST for the patient. Because it involves a judgment call, different doctors will inevitably see things differently.
In the hands of a well-qualified thyroid surgeon — a surgeon who does LOTS of thyroidectomies a year — the procedure is relatively safe. There is always a chance of infection. And there is always the possibility that the parathyroids can be damaged or that the nerve working the vocal cords can be damaged. Those are real, known possibilities. But the more experienced the surgeon, the smaller percentage of patients that experience those problems.
RAI creates a different set of issues. From our doctors’ standpoint it eliminates the possibility of infection, or of damage to vocal cords or parathyroids. And that is why many of our doctors prefer it. It does not cause the eye disease. But if the eye disease is already present and visible, it has been shown to aggravate the eye symptoms — temporarily — in about 16% of patients (according to one study). To counteract that possibility, our doctors will prescribe a course of treatment with something like prednisone for a few weeks/months. This course of treatment has been shown to prevent that temporary worsening. But, as you point out, that has consequences as well. And since surgery has not been shown to affect the condition of the eyes, some doctors then agree that surgery might be a safer option.
Again. It all depends upon how the doctor evaluates the risks for the patient. I don’t think the variability has to do with lack of familiarity. I think the variability has to do with different doctor’s looking at different risks in different ways. Or with them having seen some of the adverse consequences in their own patients. I know one endo who is VERY slow to prescribe the antithyroid drugs long-term because one of his patients had an extreme adverse reaction (very rare agranulocytosis).
One thing to keep in mind: because of law suits, our doctors now err on the side of going over every little thing that can possibly go wrong. It’s called “informed consent.” Prior to a major surgery a few years ago, I had to sign a piece of paper that included horrible side effect issues, including death. It is extremely unsettling. Every possible thing that has EVER gone wrong in one of these treatments will be laid out for us. Try to keep in mind that all of our treatment options are safer than remaining hyperthyroid.
in reply to: Anyone choosing no treatment? #1172442Whether or not it is safe depends upon what you mean by “Graves.” Some folks are diagnosed with Graves who have symptoms of Thyroid Eye Disease (TED). It is quite typical for doctors to wait, with no treatment. On the other hand if your blood tests show that you are hyperthyroid — which is what I suspect you mean — then it is most definitely NOT safe to wait things out.
in reply to: Scared and panicky #1172409Wishing you a good surgery and speedy recovery, Alexis.
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