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in reply to: new to replacement – couple of questions #1066903
Regarding the kidney-area pain and having to pee all the time, hockey: it sounds like you might be developing a urinary tract infection. Not everything that occurs post treatment is related to Graves. My doctor lets me come in and give a urine sample when I suspect an infection like that. The nurse reads it, and hands out a prescription if I’m right.
Also, the easiest, safest and best way to take your replacement hormone is first thing in the morning, on an empty stomach, waiting AT LEAST a half hour before eating anything else. Drink a full glass of water with your pill. Yes, you will have to make an adjustment in your morning schedule to accomodate this change. I did a fair amount of grumbling at first, myself. But it is worth it.
Oh, yes, and the four hour recommendation is for supplements — like calcium pills and vitamins. Not for the cereal or milk you might have at breakfast.
in reply to: WBC low…what’s next? #1067263While you are making up your mind, mykena, you might want to go online and look up the definition/treatments/etc. for agranulocytosis— which is the technical name for the condition that can be caused by the ATDs that lowers white cell count. It might help you to understand why you feel your doctor is being "pushy."
in reply to: Ostheoporosis and Graves #1066924One word of advice about taking calcium and other vitamin/mineral supplements: If you are on replacement hormone be sure to take that supplement about four hours after you take your replacement hormone pill. Apparently, researchers have found (or suspect) that taking the supplements too soon can interfere with the absorption of our hormone meds. Again, this suggestion does not necessarily apply to those who are taking ATDs, but it may be a good idea to get into the habit anyway.
in reply to: Can anyone please shed some light? #1066934Perhaps it would help, anji, if you know a little about pregnancy and thyroid needs. As the pregnancy goes along, the body requires different levels of thyroid hormone. Since your thyroid is not working normally, you will need to be monitored closely, and your dose of PTU will likely be changed more frequently than it might otherwise.
One of the things I’ve read the body does in pregnancy is to slightly suppress the immune system. That allows the baby to develop without the mother’s body developing antibodies to the baby’s tissues. Since our disease is caused by antibody levels, when the immune system is somewhat suppressed, the antibody levels go down, and our symptoms may disappear. This is another reason why our blood levels need to be monitored closely during pregnancy. It is not uncommon for women with Graves to go off the meds at some point in the pregnancy, or only to have to take a very small dose, only to have to go back on them at some later point in time after the baby’s birth.
It is exciting to be expecting your first baby. Congradulations! And I do wish you an easy time of things.
in reply to: Ostheoporosis and Graves #1066920Hi, and welcome to our board.
I took a special class session on osteoporosis a few years ago, so I’ll share what I learned. Osteoporosis is a natural condition that occurs due to aging. We only build up bone in our early years, and sometime around our 30s we start to lose bone. So, if people live long enough, they will tend to become first osteopenic, and then to have osteoporosis. Genetics plays into things, as well, with some groups of people and some families developing it earlier than others. Eating habits play into it, especially early eating habits. If children drink lots of milk, for instance, that calcium goes into bone construction. They are "banking" bone for their later lives. The earlier kids start drinking sodas and other types of beverages, in place of milk, the less calcium they are depositing in their "bone bank" and the earlier they might develop osteoporosis.
There are bone-building cells in bone, and also bones that take away bone. As we age, the bone removing cells gain control. This latter group, the group that removes bone, is, for whatever reason, stimulated into extra activity by excessive levels of thyroid hormone. So, while we are hyperthyroid — however minorly we might be hyperthyroid — we lose more bone that we would if we had normal levels of thyroid hormone. Some of us must take steroids to control eye muscle problems (TED) and steroids cause bone loss. So, there are a couple of reasons why people with Graves might develop osteoporosis earlier than their peers, or earlier than they would have if they had never been hyperthyroid.
But all of this is NOT related to any autoimmune condition. It strictly has to do with too much thyroid hormone; antibody action is not causing your osteoporosis.
The antibodies for Graves do not attack other body organs. The known body sites where they have an impact are the thyroid, the eye muscles, and, in a very small minority of us, the skin on the lower legs. They do not cause leukemia, lupus, or any other autoimmune disease. But when someone turns up with one autoimmune disease, it is known that they are at a slightly higher risk of developing a second one, or more. And, a tendency to autoimmune diseases can run in families.
Taking supplements to boost the immune system will simply increase the symptoms of whatever autoimmune disease we might have. Our immune systems are working — they’ve just made a mistake and created an antibody to one of our own body parts. Our immune systmes are not weak, or compromised. They’ve simply "goofed."
I would recommend that you get a family member or friend to go with you to your next doctor’s visit to listen and take notes, and possibly to ask questions. And, at that visit, ask the doctor for all of his reasons for recommending surgery at this point in time. The reason for the friend: when we are consulting with a physician about things like reasons for surgery, we do not typically grasp all the points, or we may not grasp the underlying reasoning. We may, but it is highly likely that we will miss something that might be important. We tend to listen emotionally; the friend listens more objectively. I once went with a friend who needed surgery to the pre-op meeting with the surgeon where instructions were given for surgery preparations. I took notes, and then emailed her the notes. Her response was along the lines of , "I didn’t remember that he told me to do that…or that…. etc."
Anyway, it is very important that you understand why the doctor is recommending this course of action for you, so that you can mull it over as objectively as possible. There can be good medical reasons why something is recommended for one patient and not another.
in reply to: Too much levoxyl? #1066946One poster to this board, long ago, felt hyper every month at the same time with respect to her menstrual cycle. She would go in to have her blood tested, and find out that her thyroid levels were normal. So, it is possible to feel hyper symptoms, and not "be" hyper. I have gone in, feeling hyper, and had my blood tested, and found it to be smack dab in the middle of normal. Other times, I’ve gone in and found out that I am, indeed, hyper. So, my opinion is that we cannot always tell where our thyroid levels are by how we feel, even though we know those hyper symptoms so very well.
My endo made a point of telling me, early on, that to test the blood too soon could lead to yo-yo hormone levels (up and down, up and down, up and down). She recommends waiting a minimum of six weeks between blood tests when an adjustment has been made to the replacement hormone dose. She prefers to wait three months. The one time we did not follow that recommendation, I did indeed start to yo-yo, briefly. So, I guess what I’m trying to say is that when we are adjusting to a replacement hormone dose, it is really important to be patient. By all means, if the nasty symptoms keep up, call and talk with your doctor’s office nurse. But if they want you to wait, there is a good reason.
I hope you are feeling better soon,
I’m sorry for everything you are going through right now, teacherhelper. It’s bad enough to be dealing with Graves in a "normal" time in ones life. But to have it going on while someone else in the house is majorly ill has to be the worst thing possible. My heart goes out to you.
To add to what Ski said about the lab reports: They typically give you a range of "normal" for every part of the blood tested. And then, there is a column that indicates whether or not an abnormal reading is "high" or "low". So, when you are looking at your thyroid numbers, a quick way of telling what is going on is to look at the TSH and the T4/T3. T3 and T4 are actual thyroid hormones. TSH is a hormone that comes from the pituitary gland (Thyroid Stimulating Hormone) that is used to help control thyroid hormone production. If the actual levels of thyroid hormone are too high, then the pituitary lowers its production of TSH. (You don’t want to stimulate extra production of hormone from a gland that is already pouring too much out.) Sometimes, after our diagnosis, our docs only look at the TSH because the test for it is really good, and can find amazingly small amounts of it in the body. Anyway, if you think of a seesaw with thyroid hormone on one end, and TSH on the other, that is the relationship between those elements of the blood test. You want them both to be in the normal range – i.e. balanced, if you will.
And do not fret about not being able to make hide nor hair of the lab tests. NONE of us can interpret our own lab results. We can, as Ski said, use them to compare to other tests, and to symptoms, to try to get a handle on what is going on, and how well the treatments are working, but just in general.
With the stress you are under, it would help you a lot if you could find a way to relax even if only for five minutes at a time. Did you ever do Lamaze training for childbirth? When things got really overwhelming for me, I did "candleblowing" breathing. If you never took it, you might want to find someone you know who did, and have them teach you that type of breathing technique. It’s easy, it can be done anywhere, and it does bring a bit of relaxation into an otherwise stressful time. If you can destress a bit from time to time, it will help you to cope with all the problems.
I hope this helps,
in reply to: advice RAI or surgery #1067072To hubb and Katy:
After RAI or surgery, we are only hypothyroid if we are not receiving an adequate dose of replacement hormone. It is common to think, "I’ll be hypothyroid for the rest of my life," but that is not true. Replacement hormone IS thyroid hormone (T4). It is chemically identical to thyroid hormone (T4). It works like naturally produced thyroid hormone. And it has no typical drug side effects issues other than those associated with getting either too much of it (we become hyperthyroid until we lower the dose) or getting too little of it (we fall into hypothyroid levels until raising the dose). Unlike the ATDs, when it is utilized in the body, there are no toxic by-products of it being metabolized: it is designed to be used by the body.
So put aside any fears of being hypothyroid for any length of time. Yes, after RAI many of us do go hypo, temporarily, while our levels are adjusting, and we’re testing out various doses of replacement hormone. And, that can be true after surgery as well. But once your dose is found, and you are stabilized on it, you are no longer hypothyroid. And the minor levels of hypo we may experience are significantly less of a health problem than being hyperthyroid is.
Looking on the bright side, Katy, methimazole and PTU have the potential to harm a baby if not very carefully monitored during pregnancy and during breast feeding. They have been used safely, but since they cross the placenta, and go into breast milk, the baby must be watched and sometimes have frequent blood tests. If you must do either RAI or surgery, you will be on a medication that does not have that potential. If you look at things that way, perhaps it will cheer you up a bit about having to choose RAI or surgery. I know having your choice taken away from you must seem like an additional burden to bear right now. But there truly are some advantages, too.
wishing you both good health soon,
in reply to: Wearing Contat lenses after having RAI #1066968To clarify — I had dry eyes prior to RAI. I developed other, overt symptoms (primarily double vision) of the eye disease many months after my RAI treatment.
People develop the eye disease based on antibody action. Some folks develop horrendous eye disease before their thyroids go wonky. Some develop it long after they’ve been treated. Since none of our treatments for the thyroid imbalance involve getting rid of the antibodies at this point, the eye disease comes as it will. If you go to the top of the board column, you’ll see a post from Peter about the newsletter in November. If you can read a PDF file, you can download the newsletter. There’s an article in it about some current research on the eye disease. If you cannot read that type of file, the gist of the article was the discovery of a protein shared by the thyroid AND the eye muscles that is suspected of being the link between Graves and TED.
in reply to: Wearing Contat lenses after having RAI #1066965I do have the eye disease, albeit in remission, and my eyes are extremely dry, and contacts feel like suction cups after about an hour or two. I don’t think this had anything to do with RAI, inasmuch as the dry eyes showed up before I had my RAI treatment.
in reply to: very confused about a bunch of stuff… #1066981Sjeffreys:
RAI does not cause the eye disease. The eye disease is caused by antibodies, just like the thyroid disease is — and these antibodies are likely to be related if not the same. RAI has, however, been shown to stimulate an autoimmune response, which raises antibody levels, and in a minority of patients (less than 20%) causes symptoms of eye disease to temporarily increase. It is thought that most of us with Graves have some degree of eye disease, even if the symptoms are not overtly visible: they have, however, been noticed in soft-imaging studies (like MRIs, ultra-sound studies, etc.). Surgery has not been shown to stimulate the immune system in the same way, so people with existing eye disease are sometimes directed to surgery rather than RAI.
in reply to: very confused about a bunch of stuff… #1066976You should not trust anyone online to interpret your test results for you, and give you an analysis of your condition. Only your doctor can do that safely. There are more things to consider than just the thyroid numbers, for one thing. So if you are concerned, try to get an appointment with another endo to get a second opinion. It kills two birds with one stone: you get another, experienced doctor to give you an opinion, and you can "audition" him/her to see if the explanations make more sense to you. I get the sense that switching doctors isn’t an easy option for you. But getting a second opinion is one way of meeting another doctor without necessarily committing to them before you know whether or not you like them.
As to some of your other points:
It is standard practice to go off the antithyroid drugs (like methimazole) a week or two prior to any RAI procedure, in order to open thyroid cells up to the treatment iodine. You want the thyroid cells to be thirsty for iodine, and to soak up as much of the treatment iodine as possible. For the same reason, you should be careful of iodine intake during that time, eliminating shellfish, etc.Taking the inderal when you go off the ATD (antithyroid drug) 1) helps to protect your heart from the effects of excess thyroid hormone and 2) helps to make you more comfortable. It makes you more comfortable by helping to lessen the tremors, and it helps a bit with the insomnia. How long you take it after RAI usually depends upon the patient. Many of us take it at least through the "dumping" period after RAI, when we go more hyper than normal for a brief period of time. As with any drug, there are side effect issues, and with some of us we cannot safely take it for very long. (For example, I have asthma issues, and if I had had an asthma attack while on the inderal, my doctors would have had a much, much more difficult time treating the attack. So, for me, taking it was riskier than for the normal person.)
As to whether or not you would resume taking the methimazole, that, again, depends upon the patient. I never was put back on an ATD after RAI, but other people have been. The medical condition of some people may warrant the extra protection of the ATD, while for others it is safe to stop the drug.
As to the amount of time that it takes to go hypo after RAI, that will vary, too. Try to remember, though, that the folks who post to online boards the most are the ones who are newly diagnosed, and the ones for whom complications occur with treatments. You will see problems more in online boards like this one than might be the "norm" in the real world. Yes, problems do occur. But the online world tends to skew things to the side of "problem" rather than to the side of "WOW, this treatment worked really well!" This board is a bit different than some because the moderators typically have gotten well again, and can give that perspective. But the regular posters are always people dealing with problems. You can get a bit of perspective on things by going through posts from six months ago. The names will be different; the problems will be the same. Once folks get well, they typically do not spend much time posting to boards like this one. They go back to their lives. You will see an occasional post from a voice from the the past, but usually it is only one or two.
So, Trish, try to keep your chin up. This disease of ours is very treatable. It is the normal thing for people to get well again. The treatments DO work.
This is the first I’ve heard about back pain with Graves, Trish. I don’t know what your endo might have been talking about unless he was talking about something specific with you and your life style or medical history.
In general, for all of us, we have to be careful, while hyperthyroid, not to stress the muscles. Too much thyroid hormone affects their biochemistry, just like it does the rest of the body. In addition to actually losing muscle mass, which causes weakness, I was very aware that my muscles would not work as quickly, recover as quickly, from exertion while I was hyper. So we’re more likely to get pulls, strains, shin splints, without careful behavior with the muscles until our levels are regulated, and the muscles have had time to heal, like the rest of the body.
As for the muscle relaxers, I would call the doctor back to get his take on it; online sources can be helpful, but I prefer to go to someone I trust. I would also (as a backup) ask a pharmacist. Pharmacists spend their college studying chemistry and drugs, and sometimes are really good resources for specific questions about whether a drug is appropriate in certain situations. (It is also easier to reach a pharmacist…..) Until that time, you might try moist heat, laying on your back with your knees up to your chest, probably things you’re already doing…..
I do hope you are feeling better soon.
in reply to: Living through Graves disease #1067085There is no excuse for abuse. As an adult, I realized that I was more emotionally volatile while I was suffering from the thyroid hormone imbalance. I found ways to control myself. I realized that my emotions were no longer a good guide to behavior because they were so up and down all the time. So I learned, quickly, not to act on the emotions. Other people posting here have had similar experiences with learning to control those emotions. I remember Jake writing one time that when anger hit him one time, he yelled at his family that he was angry but he loved them!
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