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in reply to: I am new here #1074720
Hi, Lana:
About four years ago (after being on replacement hormone for four years or so), I went hyper again. My endo adjusted my dose of replacement hormone down. That lasted for about three months, and then the dose was raised again back to where it had been. I’ve been steady ever since at that same dose.
So, it is possible to have occasional glitches without it meaning that you have to go through a whole new treatment process.
Good luck, and I hope you are feeling much better soon.
Anecdotal (the term your doctor used to describe the basis for his/her decision to keep you hyperthyroid to protect your eyes) means that there are no studies to confirm the judgment. Anecdotal reports kept women on estrogen replacement for decades, because doctors "thought" that it protected the heart and the bones after menopause. In their practices, they "thought" that they were helping prevent heart disease, in addition to minimizing the symptoms of menopause. I, along with tens of thousands of other women, went onto estrogen replacement only to find out — due to an actual study done over many long years — that almost NONE of the things that doctors anecdotally thought were true actually were true (it did not protect the heart — it did protect the bones), and that there were serious side effect issues (like increased cancers). The anecdotal reasoning was proven to be dead wrong. But many doctors thought it.
In the case of hyperthyroidism, it is a proven fact that while we are hyperthyroid we lose bone. The cells that munch bone work harder than the cells that make bone causing a cumulative loss. Osteoporosis is a likely result. And osteoporosis can be disabling. There is a significant increase in the risk of hip fracture later on in life, for women who have been hyperthyroid, even though they received adequate treatment.
When we are hyperthyroid, the heart is over-stimulated — in however minor a fashion. Excess levels of thyroid hormone also can cause disruptions in the rhythmic pulse of the heart, which is dangerous. In a person who might have heart issues, it can be lethal.
In a report in the publication of the American Thyroid Foundation a few years ago, a doctor reported that studies had shown that even minor levels ("subclinical" levels ) of hyperthyroidism over timen can produce harmful long-term health issues and that it needed to be treated.
The problem an organization like ours has is that there is a lot of unproven information, all the time, especially on the web. But we cannot subscribe to it. The condition is too dangerous. In addition, we have experienced our own "anecdotal" issues with family, and friends on the board dying, for example, because their hearts were damaged by hyperthyroidism. So, if we err, we err on the side of not turning our readers and participants into guinea pigs for unproven theories.
in reply to: Eye Problems #1074746When we have thyroid disease the quality of our tears change. They become more watery, and they do not lubricate our eyes as well. What you are calling "eye fatigue" when you are looking at a computer screen, etc., could be, in fact, dry eyes. We have to be extremely careful if this is going on, and put artificial tears in our eyes to prevent corneal damage. The drops we need are not the "get the red out" type of drops, nor are they the drops for allergy issues with the eyes. The products are labelled "artificial tears."
Double vision is a part of Graves’/Thyroid Eye Disease. Whether or not that is why you are experiencing double vision occasionally is another question, and one only the opthamologist can answer.
Lid problems may be a result of the thyroid imbalance.
Pharmacists are a very good resource for you right now. They typically will give you a print-out of the side effects of prescriptions you receive; they can also answer questions that you have about the drugs you are on, and whether or not something might be a side effect. I use my pharmacist a lot.
One of the problems many of us had with this disease is that we do not "look" sick. As a result, our family and friends can be less than supportive. They do not realize just how very sick we are. The closest any of my friends or family came to understanding was my best friend who told me that she thought I was "depressed." I became so angry: "I am not depressed; I am SICK!!" So, I do understand. I would print out comments from the medical resources on the web about the seriousness of the disease to give my husband. He didn’t get it, either. They all got it when I was feeling much, much better (ironically). When I had had the treatment, and gone hypothyroid, I had an allergic reaction to something, and my eyes got swollen to the size of apricots. And the skin turned mauve. I looked like a battered wife! THen, they all "got it." So, I’m glad you found us: we do, indeed, "get it."
Good luck with your new doctor.
in reply to: PTU QUESTIONS! #1074748One of the drawbacks of PTU is that it tastes terrible. I do not remember that bad taste lingering, but most of that time in my life is a bit of a blur. I remember trying to swallow those pills very quickly, so that they did not linger in my mouth for any length of time.
If I remember correctly, PTU has a relatively short life-span, biologically, which is why we are typically instructed to take it three times a day. I found that i needed to take the doses roughly eight hours apart to keep hyper symptoms from emerging. That is difficult, given that one of the doses has to be late at night, and I was usually extremely tired by then. So, space things out as evenly as you can to get the optimal benefit from the drug.
For me, the PTU affected cognitive activities. I felt as though my brain waves were having to wade through molasses: I could not remember much of anything; thinking processes were slow. People here on the board told me that all that was just the disease, but I decided it was the drug, a personal reaction to the drug, and told my endo to go ahead with RAI. I never again experienced that sloggy, slow brain function, so I think that I was right. Nevertheless, it is important to check blood work to make sure that you aren’t on too much of the drug: being hypo can slow down the brain, too.
First off, Sara, I am so sorry for the loss of your baby. I, too, lost a baby shortly after her birth. It is hard.
The shorthand form of the drug you are on is PTU (if you don’t want to spell that long name out again). I could never spell it without looking directly at the pill container.
” title=”Wink” /> While the drug does start working right away, it can take some time before we actually feel the results. That is because the drug only interferes with the production of new thyroid hormone. Thyroid cells also store thyroid hormone for future needs. Until the stored supplies are used up, you won’t feel much of a difference on the drug.
Then, there is the possibility that you will need adjustments of the drug dose. Typically we have to wait at least a month before going back for blood tests to determine how well the drug is working.
You are very ill right now, Sara, and might indeed have to make some concessions, temporarily, in order to preserve your strength. Hyperthyroidism is devastating to the body. If you have to keep the job, perhaps your school work could be deferred until the next term? We do have to make adjustments for the period of time when we are very, very sick with this disease. We cannot continue, typically, to do absolutely everything. Something has to give, otherwise, in our weakened state, we can become sick with other problems, making the whole issue that much worse. Do take good care of you.
Another thing to discuss with your doctor, though. Sometimes the drug (PTU) can cause body/joint aches. Did these symptoms start with the drug or shortly thereafter? If a symptom starts while you are taking a drug (any drug), you need to consider whether or not you are having a side effect and discuss it with your doctor. There is another drug that does pretty much the same thing as PTU. And there are other treatment options, often.
None of our treatments, however, works instantly to give us back our energy and health. There is a process involved. First: we have to get back to normal levels of thyroid hormone. This can take some time. Second: we need some months at normal levels of thyroid hormone so that our bodies can heal from the damage done by too much thyroid . It helps, I think, to know that you need to look for progress and not absolutes. If you are seeing progress, seeing that some things are better, that is a good sign. We just need infinite patience during this whole process.
I do hope you are feeling much better, and soon.
in reply to: Tapazole Dosages #1074772Nobody online — and I do mean NOBODY — should tell you whether the Tapazole dose you are on is the right one or not. The only way to know that is to look at your blood test results. Everyone is different, and the dose that works for one individual might be too much, or too little, for another.
Using this medication requires what I call the "Goldilocks" approach. You have the find the dose that is "just right," for you. This "just right" dose puts you into the normal zone for thyroid hormone levels. Sometimes that requires a bit of trial and error. And sometimes, a dose that works perfectly well for a while, will require adjustment in the future. Our disease is a result of antibody action and what the Tapazole does is to control thyroid hormone production, not antibody production. If antibody levels rise or fall, the dose of Tapazole needs to be adjusted accordingly.
I hope you are feeling better soon.
in reply to: Muscle Loss in Legs & More #1074807Hi, Grasshopper:
No, we cannot be both hyperthyroid and hypothyroid at the same time. It’s impossible. What CAN happen, however, is that the medication that you are on might have lowered your thyroid hormone levels into the hypo zone. PTU acts as a chemical block to the production of thyroid hormone, and if we take too much of it, even when we would be hyperthyroid without it, we will have too little thyroid hormone in our bodies.
That said, it is a known fact that some folks gain weight rather than lose it while hyperthyroid (i.e. without the intervention of the ATD).
As for the muscle weakness, that should definitely be checked. We do have to do some exercise to keep muscles strong. And there are times when our doctors think exercise is a bad idea. During those times, I would sit on the floor and do easy stretches; or sit in the rocking chair and rock (yes, it uses muscles!) The stretches helped when I had a sciatic nerve going haywire one time, so you might try that. But the operative word is "gentle" stretches. No bouncing or straining. If the doctor says that it is OK to exercise, try 15 minute walks. It is extremely important that we use our muscles. When we do not use them, they weaken. For us to feel well and healthy again, the muscles need to be somewhat strong.
I hope you are feeling better soon.
I would suggest that you get a second opinion about being kept hyperthyroid to reduce eye symptoms. It sounds risky, to me. But another doctor would give you a better evaluation of the treatment.
in reply to: Questions I Have #1074822Hi, ManicMom, and welcome!
One of the facilitators here, Ski, had to have RAI twice. Apparently the nuclear med doctor lowered the dose of RAI, without consulting the endo or Ski, and she remained hyperthyroid. Anyway, it does happen, infrequently, that the RAI does not work sufficiently to cause us to be euthroid/hypothyroid.
As to how many folks get to euthroid (normal thyroid levels without medication), I do not have an exact figure, but the number is small. It is possible. IT is also possible that the euthroid status will not persist. If enough thyroid tissue remains, we can become hyperthyroid again. Also, the natural progression of the disease is for the antibodies to destroy thyroid cells, and so hypothyroid is thought to be inevitable for all of us eventually.
Is there a reason you are not on a sufficient dose of PTU to keep you in the normal zone of thyroid levels? Have you talked with your doctor about returning to the drug while you are waiting for the RAI to work? It could bring you some relief.
I did not find the symptoms of hypo all that different from what I associated with "normal." Sleeping more. Fatigue — but fatigue that could be combatted with some mild exercise. Muzzy brain activity. Constipation. Sensitivity to cold. I did not gain weight while literally hypo (i.e. before adequate synthroid), probably because my appetite was suppressed. I did, however, gain weight due to the return of muscle lost while hyperthyroid. (The difference is that muscle is more compact than fat, and clothing size does not change as dramatically as the weight increase.) It is important, once the doctor gives the OK for exercise, to start slowly getting back to normal exercise levels to strengthen the returning muscle.
The prevailing theory is that some form of stress is involved in the development of an autoimmune disease: something sets off an activated immune response. And family history does not have to be specific for Graves. If there is autoimmune in the history (diabetes, rheumatoid arthritis, etc.), hypothyroidism, or even prematurely gray hair, that can provide the markers for a genetic predisposition. Also, there are certain times in a woman’s life when she is more likely to develop an autoimmune like Graves : puberty, pregnancy and menopause are the main ones.
I hope you are feeling much better soon.
in reply to: hearing problem/totally frustrated #1074851Hi, Impish:
I have never heard of RAI affecting the nerve in the ear. Nerve damage to the ear can come from other sources, so citing RAI and letting it go at that is too flippant for me. I would want directions to the studies that show it, in peer-reviewed scientific journals. Barring evidence, it is simply an opinion from someone who may or may not have true knowledge.
It used to be thought that the eye disease was a part of the hyperthyroid autoimmune disease. When I was first diagnosed in 1996 the eye disease was named "Graves" Eye Disease (GED). Somewhere in the middle of my treatment however, the name of the eye disease changed to Thyroid Eye Disease (TED). I asked my oculoplastic surgeon why this was, and he told me that doctors were turning up more and more cases of the eye disease in people who had never been hyperthyroid or who had other, completely separate, thyroid issues. So they changed the name of the disease. This all has happened, though, in the past twelve years or so. So some doctors may still be skeptical, and think that treating your thyroid levels will help with the eye disease, while others have decided that thyroid levels have no impact on the eye disease. I think the distinction that needs to be made is whether you are talking about a disease process or a temporary amplification of existing disease symptoms due to thyroid hormone levels. Think of the person who has had a major broken bone who gets aches there whenever the weather becomes dank and chilly. The dank chilly weather is not making the break worse: it is, however, making the results of the break more evident. I think it is entirely possible (based on my own anecdotal experiences) that whacky thyroid hormone levels make the results of the eye disease more evident, and getting back to normal levels minimizes the symptoms (because the body and its muscles are functioning more normally). But the thyroid hormone levels themselves are not causing any new "hot" phase of the eye disease necessarily. If this is true, it makes sense why some doctors would believe that treating the thyroid levels affect the eye disease, too. In one sense, anyway. But obviously treating thyroid levels does not prevent the eye disease from occurring in the first place.
I will write to Dr. Patterson about your question on how to join NGDF. Either she, or I, will get back to you.
in reply to: meds or RAI #1074829Hi, Clara Sofia, and welcome to our board.
I know that getting a diagnosis of Graves sounds horrid, but we are fortunate: our disease has a diagnosis, and there are treatments that work to give us back our health. My mother had RAI about 35 years ago, and she was never again ill because of her thyroid. (Other illnesses, yes, but none related to either her thyroid or the treatment.) I had RAI about 12 years ago, and I am healthy again, too.
As for the meds, you should indeed start taking them right away. What they do is chemically block the production of thyroid hormone. Our doctors try to give us just enough to to keep us at normal levels of thyroid hormone. Being hyperthyroid is very dangerous to your health. There are complications that can arise from not treating it. There are some infrequent side effects of these drugs. They can lower the white cell count making it difficult to fight off infection. This only happens in about 5% of people who take these meds. But, since it is a serious side effect, if you come down with an infection (sore throat, ear infection, etc.) it is wise to see your doctor and get a blood test to make sure you have adequate white blood cells. Stopping the drug if white cell count is down, typically reverses the process. Some people are develop arthritis-like symptoms or a rash while on the drugs. Even though there are potential side effects to the drugs, the effect of staying hyperthyroid (i.e. not taking the drugs) is much more dangerous to your health. It is very important that you get effective treatment as soon as possible.
RAI removes the thyroid chemically. Iodine is only used in the body inside thyroid cells. So when we swallow the RAI, it goes directly to the thyroid. If it does not get absorbed by thyroid cells, it is rapidly eliminated from the body, primarily in the urine (but also via sweat and saliva). It has a very short lifespan, so it does not stay in the body very long. But while it is there, it is destroying thyroid cells. It has been studied for over 50 years, and is much, much safer than staying hyperthyroid. Women who have had RAI have gone on to have healthy babies, too.
Every medical intervention has plusses and minusses, but you need to know that our treatment options are much, much safer than the disease, and that they can make you well again.
Wishing you a healthy New Year,
in reply to: son not yet diagnosed, feeling frustrated #1074839Hi, Heidi, and welcome to our Board.
If you can get to the "home" page of the National Graves Disease Foundation, there should be a listing of resources. Look for publications, or bulletins — some phrasing like that. There is a bulletin that was written a few years ago about hyperthyroidism as it relates to children. It’s been a while since I read it, and it may pertain more to educational issues than symptoms, but it might be a help.
Some basic information. A blood test is definitive for whether or not someone is hyperthyroid. Typically, a thyroid panel will involve looking at the levels of T4 and T3 (actual thyroid hormones). Sometimes there will be a T7 reading — T7 is essentially the ratio of T4 and T3 in some order. Then, there will be a reading for a hormone that comes from the pituitary called TSH, which stands for T hyroid Stimulating Hormone. The endocrine system has checks and balances between the various glands. In the case of thyroid hormone, the pituitary is the source of the check. If the pituitary senses too much T4 and T3, it will lower it’s production of TSH, shutting down the thyroid cell’s work; conversely, if it senses too little actual thyroid hormone, it will raise it’s production of TSH in order to stimulate the production of more thyroid hormone. (Think of a seesaw with TSH on one end and thyroid hormone on the other: when one end is high, the other is low.)
There can be various causes of hyperthyroidism, and one of them is a virus. But unless your son has a fever, or other evidence of infection like raised white cell count, that is probably not the case. A ptiuitary cause is rare. There is something called a "hot" nodule — which is basically a clump of cells that become erratic and pour out thyroid hormone. The normal cells in the thyroid will be shut down (thanks to their responding to the pituitary’s reduced levels of TSH), but the nodule will be still going berzerk. That, too, is not all that common. The majority of cases of hyperthyroidism are caused by the autoimmune disease, Graves. That’s true of adults as well as children.
It has been shown over time that even sub-clinical cases of hyperthyroidism have a long-term adverse effect on health. (Sub-clinical would mean that there are few, if any symptoms of the condition, other than the blood test.) It is important to treat hyperthyroidism regardless of the cause.
The good news is that even the autoimmune disease is very treatable one way or another. We have essentially two options — using drugs to regulate the production of thyroid hormone or removing the thyroid. Not every patient has a choice of which option — medical conditions can dictate one over the other. But since we do have options, we do typically regain our health. So while I know it is stressful to have your son diagnosed with the possibility of this disease, it is something which can be well-controlled under the majority of circumstances.
Good luck with the doctor appointment.
in reply to: Out of remission, now what? #1074842Hi, Starlite,
I assume you mean about the meds not "working" the second time around, that they do not lead to remission. That is correct. There is a significant decline in the percentages of people who go into remission for a second time. But the meds can "work" in the sense that they would control thyroid hormone levels.
RAI information can be found in the books recommended on the NGDF home web site. I encourage you to find a book and read up on it, as well as the other options. There you will find factual, medically valid information. On the web, you will often find a profusion of opinions based on a person’s interpretation of how RAI worked for them — and this is not always helpful to someone trying to decide whether or not to undergo a procedure or treatment. In the world of medicine there are always pros and cons, and some people do not have optimal experiences with any type of medical intervention, but we need to make our treatment choice based on logic and facts, not fears and opinions. There can be medically valid reasons for any individual to do one treatment as opposed to another, and your doctor is the only person to give you advice like that.
I hope that you are being treated at this point — not waiting for the endocrinologist. Unless there is a medical reason against it, most GPs will give us a prescription for the antithyroid meds (ATDs) to fill in the gap between blood test diagnosis and endo appointment. You truly do not want to remain hyperthyroid any longer than you need to be. It just isn’t safe.
Most of the moderators on this board (including me) had RAI, so we can answer factual questions that you might have about the treatment — but we won’t give you advice: that is for your doctor.
Take care,
in reply to: About the holidays… #1075240Ski made some excellent comments in the original post, so I thought I would bring it back up to the top of the list now that the holidays are so close.
Take good care of yourselves. And happy holidays.
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