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in reply to: new at graves disease #1063374
Hi, Shelly:
First of all, it might help to understand that the methimazole only interferes with the production of "new" thyroid hormone. The thyroid, however, also stores hormone. So, until the stored supplies of hormone are used up, it is difficult for a blood test to register whether or not you are on the correct dose of the medication. Once you’ve been on it long enough — and it’s likely you have by this point — then the dose of the medication may have to be adjusted until the correct dose for YOU is found.
But since you are on the drug, and you’ve been feeling pretty good, it is unlikely that you will find yourself back in the bad old days of too much thyroid hormone. Methimazole does typically work very well to eliminate hyperthyroidism.
That said, one of the psychological hurdles we face as patients is the fact that just reestablishing normal levels of thyroid hormone typically does NOT make us feel normal again. We have to spend weeks, more often months, AT normal levels of hormone for our bodies to heal properly from any damage that being hyperthyroid caused. One of the problems caused is muscle loss. We actually lose muscle, especially in the large motor muscle areas, which is why we feel so weak. When we start to feel well again, and want to get back to our lives — EVERYTHING in our lives — just how weak we got while hyper becomes very apparent. So, when your doctor tells you it’s ok to do whatever you want, including exercise, take baby steps. When I began exercising after getting appropriate treatment, it was determined at the gym that I had about eight percent (yes 8%) of the normal strength of a woman my age in my arms and legs. I’d lost lots of strength. The muscle typically does come back slowly, but it needs to be strengthened over time by exercise. So, what I’m saying essentially is that it is very common not to feel normal when those blood tests register normal. But over time, we do regain our health again.
in reply to: lab results #1063381TSH stands for Thyroid Stimulating Hormone, and it comes from the pituitary. The pituitary acts as a type of "thermostat" for thyroid cells. If it detects too much thyroid hormone, it lowers it’s production of TSH; if it detects too little, it raises it’s output of TSH. The problem is that the TSH is really a type of "running average" of thyroid hormone levels. So if you spent five whole months, for example, with way too much thyroid hormone, then two or three weeks of normal levels isn’t going to make the "average" budge much. It doesn’t mean you have too much thyroid right now — it only means that the TSH averaging hasn’t caught up yet. It will. It just takes a bit of time. But having those thyroid hormone levels in the normal zone is a wonderful start. Try to keep patient, and you should start seeing progress soon.
One other thing: having "normal" levels of thyroid hormone does NOT mean you should instantly "feel" normal. Think of hyperthyroidism as a metabolic hurricane. While the winds are raging, damage is being done to various body systems. When you get back to normal levels of hormone, the winds are gone, but there’s rebuilding to do before things get back to actual normal. It really helps to pay attention to progress rather than to look for absolutes at this point in time.
I do hope you are feeling really normal soon.
in reply to: Speech Problems #1063395P.S. If you start taking any supplements, like ginko, know that it is possible for them to thin your blood. I’m fairly certain that a doctor told me ginko could do that. Most supplements have not be demonstrated to have any effectiveness for the issues for which people take them, but if a supplement causes metabolic changes in cell function (for example, if ginko improved neural function) then, by definition, they are DRUGS, and there will likely be adverse effects as well as the desired ones.
in reply to: Speech Problems #1063394I would think that you need to get a thorough physical, and discuss the situation with your doctor. There might be thyroid level issues associated with your problem, but it’s also highly likely that something else is going on. We tend to blame the Graves for everything that happens to us in life, but it isn’t necessarily so. You owe it to yourself to do a thorough investigation.
Wishing you good luck, too.
in reply to: Pediatric graves diseas #1063413The best thing you can do is have a serious talk with your pediatrician and a pediatric endocrinologist (if you have one). And, perhaps your pharmacist could take some time to discuss with you the pros and cons of antithyroid meds and replacement hormone for children. If given a choice of either option, know that typically any of our treatment options can make us well again.
in reply to: I Choose RAI I-131 #1063419Wishing you good luck, and good health soon.
in reply to: New at Graves #1063440Hi, and welcome to our board.
You’ll probably get lots of answers — and they’ll be all over the map. Some folks claim they cannot lose weight. Others have no problems. But the bottom line is that weight issues are NO reason for avoiding treatment for your Graves. Hyperthyroidism is dangerous. It causes us to lose bone and muscle. In fact, a good part of our weight loss while we are hyperthyroid has less to do with "raised metabolism" and more to do with lost muscle (muscle weighs more than other tissues). Keeping a good muscle base, a strong muscle base, keeps us weighing less than we would without it.
Also, you will not "be" hypothyroid after RAI or surgical removal of your thyroid unless you are not taking an adequate amount of replacement hormone. Yes, we do typically "go" hypothyroid. And then we regain normal levels of hormone once we take our replacement pill every day. It’s not perfect. Having a well-functioning thyroid would be perfect. We lost that, unfortunately. But our replacement pill is a really good second best.
Wishing you good luck with your treatment decisions.
in reply to: Chronic Weakness 17 Months in Remission #1063464Just a note to reinforce Ski’s comment to you, Jana. One of the endocrinologists that spoke to us at one of our annual conferences made the point that the muscle we lose while hyperthyroid does tend to come back over time, but that it is "mushy" muscle. I.e., it needs to be exercised to get us back up to normal strength. Getting someone like a physical therapist to analyze what exercises might be most beneficial can be very helpful.
Hi, Christina:
Antibody levels fluctuate for no well-understood reason. You might check out EllenB’s comments today about antibody levels and remissions. It sounded to me like having negative antibody titers is not unheard of. And, that having a negative antibody level doesn’t necessarily predict remission possibilities.
in reply to: Panic Attacks? #1063475Well, I was plagued with panic attacks for a while prior to diagnosis, and during early treatment. Once my thyroid levels had been controlled in the normal zone for a while, the panic attacks went away.
How did I cope? I was told by a psychologist that the body cannot sustain a panic attack for longer than about 20 minutes. Something about the adrenaline or whatever — I don’t remembver the specifics, just the time frame. Give or take. So that helped me when they occurred. I knew they were of limited duration. Not hours, not days, just minutes. I could cope with twenty minutes. It helped me to relax during the "ride."
in reply to: Problems with synthroid after thyroidectomy #1063484Sometimes, we "feel" a dose increase, and then settle in and feel ok. Whether that is what is going on with you is something for you and your doctor to try to figure out. But, if I were in your shoes, and had experienced thyroid storm, I would likely be really alert to any signs of hyper symptoms and worry/fret about them. Another thing I would do, though, would be to keep a log of heart rate — particularly when I felt it was fast, to double check. That will either reassure you, or give you something to show your doctor. Doctors tend to be swayed by "objective" data more than subjective commentary.
There’s something else to know about, too. Heart palpitations — which we typically have when we are hyperthyroid — is simply an episode where we actually feel our heart pounding, seemingly out of control. It doesn’t mean it IS pounding out of control, just that we feel it, when normally we do not feel our heart beat at all. The majority of time — the vast majority of time — it doesn’t mean anything at all is wrong. But it’s frightening. Whether that is what you are experiencing is something to figure out with your doctor as well.
In addition, sometimes our doctors are willing to split a dose. I.e. on some days you would take 150mg and somedays you would take the 137. The active ingredient in synthroid has a long "half life" — or relatively long half-life, and splitting the dose can give you a base level that is higher than the 137 — where you are hypothyroid — and the 150, where you feel hyper symptoms. But know, that whether or not the doctor is willing to do this depends completely on what you blood tests show on each dose. If your thyroid level isn’t high on 150, your doctor might want you to tough things out a bit longer, to see if you stop feeling whatever symptoms are causing you worry.
in reply to: newly diagnosed #1063503Hi, and welcome to our Board.
I think the best thing anyone can do in your situation (which was where I was fourteen years ago) is read everything you can get your hands on about how the thyroid works, what the tests are that indicate malfunction, etc., and information about treatment options that is OBJECTIVE. We have three treatment options — all of them are, in general, safer than remaining hyperthyroid. And, know, that we do get well again provided that the hyperthyroid condition didn’t go on, untreated, for too long. As I said, I was diagnosed fourteen years ago. For at least the last thirteen years, I have had my health back. And that is the typical story for most of us.
Also, be careful of the information you read online. Some online info is good; some of it is outdated, or misinformed; some is dangerous. Our board tries to provide good info, but it can be discouraging to a newcomer because folks seem so very ill. They are. The people who get well again typically do not spend time online posting to boards like ours. It can make things seem awfully grim. But we have a few folks here (me, James, Kimberly, Ski) who stick around to try to provide perspective.
If you have questions, feel free to ask us. We won’t tell you what to do, but we can try to explain what is going on, how things work, what technical jargon means, etc.
Wishing you good days soon.
in reply to: Remission after 5 months?? #1063492Antibody levels can rise and fall for no well-understood reason. I am sure that I had at least one episode of hyperthyroidism, which remitted after a few months, only to return again three years later. So it is possible you could be experiencing a lowering of your excessive thyroid levels that has nothing to do with taking the antithyroid drug. Basically, ALL the doctors can go on is whether or not taking methimazole, or whatever drug you are on, controls your thyroid levels in the normal zone. If taking even the smallest dose of it makes you hypothyroid (another disease state), then they will take you off of it.
I understand that you are concerned about going hyperthyroid again, with all it’s problems. It can — most likely will — happen again, if you have Graves. All you can do is make sure that a qualified doctor is checking your thyroid levels at reasonable intervals. I do hope things work out well for you.
When you have Graves you are in things for the long haul with a doctor. If the doctor cannot trust you to cooperate with their instructions you are in trouble because they will never, ever listen to your issues without skepticism. You need your doctor to trust you to be compliant. So, my advice is whatever you do, do NOT tinker on your own with your meds.
As to the variability of test results numbers. Different labs use different techniques and different testing compounds etc. in their testing. This is why each lab issues its own range of normal, which will differ from another lab’s range somewhat. It has nothing to do — as far as I know — with being "up to date." It makes sense not to have tests done at a variety of labs if it is not necessary, because comparing one lab’s numbers with another lab’s numbers can confuse. As it has done. So, another piece of advice: whenever possible, stick to the lab used by your endocrinologist.
I view with skepticism any claims online from patients that they can tell where their levels are optimal. Why? Because I’ve been a Graves patient for 14 years now, and have had lots and lots and lots of blood tests done. I have gone in convinced that I am hypo, and had a TSH of 2.0. I have gone in convinced that I am hyper, and had a TSH of 2.0. I have gone in and felt fine, and had the same TSH. I have also gone in and felt fine with other numbers within the normal range. How we feel has little of nothing to do with thyroid IF the thyroid levels are within the normal range. Maybe at the very fringes of normal you can have symptoms. But if your rear end is dragging, and your levels are mid-normal, then there is something else going on. Maybe your body hasn’t had time to heal from the previous thyroid imbalance. It takes time AT normal levels of thyroid — months of time — for our bodies to heal. Maybe your muscles need to be strengthened — we lose muscle mass and strength while hyper. Feeling tired may keep you from exercising, but it should not, because then it becomes a vicious spiral downward. The less we use our muscles, the weaker they become. We NEED to work our muscles. Baby steps at first, but little by little we need to rebuild strength.
It isn’t easy. I don’t mean to imply that it is. I had to drag myself out for brief walks. And I found that I felt a wee bit better when I did that. I had to pump iron — which started out as small paperback books, because I had little strrength. But gradually, I regained strength and stamina.
Wishing you better days and soon.
in reply to: Help! Problems with my finger nails! #1063519I am really sorry for the situation you find yourself in right now. The nails "could" be related to your thyroid disease: a condition called onycholysis can occur while hyperthyroid, where the fingernails become partially separated from the fingertips. It would require a doctor to determine if that is what is going on with your nails.
Panic attack and anxiety symptoms can definitely be related to too much thyroid hormone. (Another indication of how ill you are.) I had panic attacks until my thyroid levels were controlled in the normal zone. Then they disappeared. When you experience one, it may help to know that your body will not have to endure it for very long. A doctor once told me that 20 minutes is about the limit for duration of a panic attack. Knowing that it would end, and soon, helped me to tolerate them.
It is up to you to work with your doctors to control your thyroid hormone levels. PTU can cross into the baby via breast milk as well. And there are new guidelines out about taking it (it has been shown to cause liver problems, especially in children), and whether or not it is still the medication of choice for nursing moms is not something I know. If it turns out that you cannot safely take either one and continue to breast feed, I will just say that babies have thrived on formula for a long time. It isn’t, perhaps, optimal. But it is a whole lot healthier for a baby to have formula than for the baby’s mother to ignore hyperthyroidism.
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