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in reply to: Normal or hypo with these labs? #1066137
The numbers all by themselves are meaningless. You need to have the lab’s established range of normal next to your numbers to see where your numbers "fit." To satisfy yourself, you need to get your lab report, where the published range is listed next to your numbers.
Second, the actual free T4 can fluctuate a lot more rapidly up and down than does the TSH, so it is not the most important reading. What your doctor is looking at is the overall picture of where your thyroid hormones are, so he/she is going to look at the TSH number which is like a moving average of the flow of your thyroid hormone levels. Also, unless things have changed recently, the test for TSH is a finer test, reading tinier amounts of it than the tests for actual thyroid hormone levels. The TSH is like using a ruler that measures to eighths of inches next to a ruler that measures to quarters of inches( the tests for actual thyroid).
Third, don’t believe anyone online who tries to interpret your lab results for you. You have a doctor who is much better qualified to do that.
I do hope you are feeling much better now that your hormone levels are getting stabilized. But don’t expect to feel "normal" right away — you won’t. Our bodies take a beating while hyperthyroid, and it takes time AT normal levels of hormone for the body to heal. In addition, depending upon how long you were hyper, you might have adjusted your thinking to assume that some level of hyper is "normal." That is particularly true if you were diagnosed before you felt really sick. Anyway, getting back to normal levels can feel a bit sluggish at first to some folks.
For jjbartlett: Hyperthyroidism is the the thing that makes us so very ill, no matter what its cause. It doesn’t matter whether Graves causes it, or a berzerker clump of thyroid cells (called an "autonomous node) causes it, or whether an infection causes it. BEING hyperthyroid is the metabolic equivalent to the body of being run over by a truck. Hyperthyroidism must be treated effectively, or the long-term effect on your health can be devastating.
What is "Graves?" Graves disease (which accounts for a HUGE majority of the cases of hyperthyroidism in patients) is an autoimmune disease. I suppose you could say that is the bad news. Autoimmune diseases do not go away. They are caused by antibodies, created by the immune system. The antibodies mistake thyroid cells for an "invader" and procede to attack it, and, in our cause, cause the thyroid cells to make and release an over-abundance of thyroid hormone. Antibody levels can go up and down for no well-understood reason, and if they go down, we call it a remission if it lasts long enough, and we can be symptom free. But remissions are temporary, by definition, so the disease typically returns after a period of time. But there is also GOOD news because antibodies are very specific to the type of tissue they attack, and in our case, we don’t absolutely NEED a thyroid. People live healthy, energetic lives without thyroids. I have several friends who had thyroid cancer, so every last vestige of thyroid cell has been removed from their bodies. They are not sick people. They take replacement hormone, and go about their lives normally.
So, the issue for you to focus on is how best to treat your hyperthyroidism EFFECTIVELY. We all make a decision based on what we feel most comfortable doing, and what seems to work for us. There are several facilitators here who have chosen to stay on the antithyroid drugs (PTU or methimazole). One of them is in remission at this point in time, and not taking any drugs. Ski and I (among others) chose to have our thyroids removed, via RAI, and we are on replacement hormone. I cannot speak for Ski, but I had my thyroid removed via RAI because I hated how I felt on the antithyroid drugs (ATDs). It turns out that I was more susceptible to the side effect issues than others are. RAI gave me back my health.
And that is the goal, and it is an achievable goal for most of us: to get healthy again. So, whether your hyperthyroidism is caused by antibodies or something else, please know that once you’ve eliminated the hyperthyroidism, you can expect to regain your health.
in reply to: Weight gain from hyper to hypo? #1066178Stephen:
When your doctor told you that getting regulated after RAI can take nine months or so, he/she did not mean that you would be bouncing back and forth between hypo and hyper. You might. But the more likely scenario is that you will spend a bit of time still hyper, while the RAI is doing it’s work, and then go hypo. If your blood levels are being checked at regular intervals, it is not typical for any of us to go extremely hypo, and if it is caught early enough, we’re put on a dose of replacement hormone and don’t spend much time in actual hypo territory. From then on, it’s a matter of adjusting the dose of replacement hormone to get it in the right spot of normal. That right spot of normal has changed throughout the years that I’ve been on replacement, to a much narrower window. For example, on our blood tests normal is a TSH in the range of 0.5 to 4 — I’m pulling this number out of the air, and it’s likely to be different. Well, my endo used to like a TSH of 2 to 3 in that window, and I typically felt good anywhere in that range. REcently she told me that the preferred range is now a TSH of 1 to 2. So, the thinking changes over time. Note, however, that any of those numbers are still in the normal "range". It’s just an arbitrary selection INSIDE the normal range of the best replacement spot. I did not have time to query my endo about this change in thinking, but I am going to see her soon, and will try to remember to ask.
Regardless of all this, I think it is extremely helpful to know what some of the aspects of the weight problem are. Knowing that I could not eat as much as I normally could because of the loss of muscle, helped me to keep my weight within a decent range. I may not have had control over my thyroid levels, but I DID have control over the foods that went into the body. I ruthlessly eliminated empty calories for a while (things that taste wonderful but have no nutritional value) and focused on regular meals with good nutrition in them. My body had been through the wringer and there was no way I was going to "diet" in such a way as to deprive it of needed nutrition. And it helped to drag me out to exercise ("pumping iron", and taking walks) when I wasn’t "feeling" like it because I knew I was helping my returning muscle to come back to some semblance of its former strength. Kimberly had a great list of suggestions about ways to approach "diet" during these days. Doing those things can help.
in reply to: Alternating Synthroid doses #1066161Yes — my endo decided to "tweak" my dose of replacement to hitch it up a notch just recently. I am to take one dose four days a week and another dose three days a week. I got one of those weekly pill containers to keep track of things.
in reply to: Weight gain from hyper to hypo? #1066174The weight issue is very complicated. But, to try to simplify things for you, when we are hyper — even by minor bits — we lose both bone and muscle mass. Once we get to stabilized, normal levels of thyroid hormone, the bone loss slows down (losing bone is normal as we age), and the muscle starts to slowly return. At least some of it comes back. The presence of strong muscle raises our metabolic rate: i.e., with good amounts of strong muscle, we can eat more than we can when we do not have as much strong muscle. Muscle uses more calories, even at rest, than other body tissues do. If you have been back and forth between hyper and hypo, you have not had any opportunity to get back to your strong muscle. So, you cannot eat as much as you would like without gaining weight, no matter WHAT level of hormone you have been at. Your metabolism has been totally messed with. Once you are at normal levels of hormone, your muscle comes back and you are then able to work to strengthen it, and your weight issues become more normal. You still may have lost more muscle than will return, but you will have at least some consistency in what is going on.
Hi, Mant9, and welcome to our board.
All of us here are patients, and your issues are serious medical ones. We don’t have the education or the experience to give you your best advice. And, it sounds like you are between the proverbial rock and hard place due to the afib issues. So take anything we say here with a healthy dose of skepticism.
Is it possible that the RAI actually "worked" and destroyed enough thyroid tissue that you would be hypothyroid at the end of things (or at least euthroid–normal levels)? We have seen reports from patients who took several months before their RAI demonstrably worked, but that is not the norm. After five or six weeks, though, there are often patients who still are hyperthyroid after RAI, if less so than they were before. We have also seen people who waited months, only to have to do RAI a second time, because they were not given enough, or enough did not get into the thyroid, the first time around. There’s no way for someone like us here to tell.
You have not mentioned antithyroid drugs like PTU and methimazole. Sometimes endocrinologists prescribe them after RAI to help the patient stay "euthroid" (normal thyroid levels) until the RAI has been shown to work. These drugs act as a chemical barrier to the production of thyroid hormone. Not all endos do this (or at least they don’t with every patient), but if the issue of taking this type of drug has not been discussed, it might not hurt to ask your endo about it. If lowering your thyroid levels to normal quickly would alleviate those afib issues, one of these drugs might be able to help. Perhaps, though, you were already on them and they proved ineffective for whatever reason?
It cannot hurt to take the time to line up a thyroid surgeon with whom you feel comfortable. If your current two doctors do not have recommendations, the thyroid cancer help group (ThyCa) has a website list of thyroid surgeons — or at least they used to — to help folks find a qualified surgeon near them. You want someone who does frequent thyroidectomies (not every surgeon does) with a low incidence of adverse side effects (damage to parathyroids or vocal chords, etc.) An experienced thyroid surgeon can give you another insight into the issues .
I do wish you the best of good luck.
in reply to: anyont NOT have a bad taste with ptu? #1066230I read that there can be genetic taste bud differences, actually. It made no difference to me whether or not there was water in my mouth prior to trying to swallow the PTU. It stilled tasted awful. Milk dulled it a bit, but not water. And some folks enjoy the taste of lemons, straight, while I cannot avoid the "pucker" look when I try it
” title=”Confused” /> . I read that scientists had found a slight genetic variation for those of us with these slight differences in the ability to taste things considered bitter.I think you should just consider yourself very, very lucky. PTU tastes absolutely dreadful, if your bitter gene is hard wired.
in reply to: Post RAI -In Range TSH – Still Feel Bad? #1066285If you go to the American Thyroid Association’s website, for their statement about the so-called "Wilson’s Syndrome" you will find that the scientific community does not support the idea that this syndrome exists.
It is very easy, in a communications media like the internet, to disseminate ideas that are not proven and, therefore,real. Yesterday, for example, the internet was busy stating that the Chief Justice of the Supreme Court was resigning. He is not. It was a hoax. But the internet would have had you believing that he was, unless you went to more authorized sources.
Be very careful what you take from websites about medical issues. A large part of what is out here on the web isn’t real, is out-dated, and, therefore, is dangerous.
in reply to: strabismus surgery #1066405We’re told there is a genetic ‘predisposition’ to autoimmune disease — but not necessarily what type. What that means, as far as I’ve been able to understand, is that someone who has relatives who have autoimmune issues (rheumatoid arthritis, Graves, TED, lupus, etc.) has a slightly higher percentage of developing an autoimmune disease than the rest of the normal population without that family history.
in reply to: Eye Floaters #1066296I recently had a huge breakdown of the vitreus goop at the back of the eye – – causing lightning flashes and distorted vision at first, then lots of floaters. I have seen the opthamologist to double check that my retina is still ok. He tells me that it’s very common as we get older. It happens in lots and lots of people who have never had GD. There are other causes
in reply to: TED surgery complications #1066249Yes, the eye lubricants and drops are indeed very expensive, especially when we’re instructed to use the single dose packets that contain no preservatives of any kind.
I’m sorry you cannot shut your eye, Shirley. And, you are right to be cautious about the possibilities of abrasion. I’m sure you are taking good care of yourself as a result.
I do hope that the docs can figure out how to fix things for you soon.
in reply to: TED-Second Radiation ? #1066266I just wanted you to be sure of something — the radiation that you had for your thyroid (RAI) probably IS a permanent "fix" for you (as your endocrinologist indicated). What makes us ill with the thyroid part of the disease is hyperthyroidism. RAI typically eliminates that possibility completely by removing enough thyroid tissue to render us hypOthyroid. The eye radiation is something completely different.
None of the treatments at this point in time affect the antibodies. For antibodies to be taken out of the equation, given the current level of knowledge among medical researchers, the only option is to suppress the entire immune system and this type of action poses severe dangers of its own. Some folks with life-threatening autoimmune diseases do take immunosuppressants, but in our case, with TED, that is not a typical option.
in reply to: Please help me understand! #1066261I think you are trying to simplify something that is amazingly complicated. Metabolism isn’t "just" the thyroid. There’s a whole lot more to it than just thyroid. Thyroid may play a role in the "at rest" part of the metabolism equation. But exercise boosts the number of calories we use. Someone who sits at a computer all day uses considerably fewer calories than someone who has a job that involves intense manual labor. Exercise strengthens muscle. The presence of strong muscle raises our metabolism allowing us to eat more without gaining weight — or even to lose weight — because muscle burns more calories than other body tissues. And that’s just for starters.
We need exercise to become healthy and strong again, and then to stay strong. And exercise helps us to keep our weight issues normal.
in reply to: TED-Second Radiation ? #1066263When you said you had had your blood tested, and that your levels were "normal", I suspect you were talking about your thyroid levels. If that is correct, then what you need to know is that thyroid levels have absolutely nothing to do with whether or not our eye muscles are under antibody attack. They are two very separate issues. TED is a separate autoimmune problem closely associated with the autoimmune that caused our thyroids to go wonky. But the treatments for the thyroid disease do not treat the eyes. And your endocrinologist will probably be very little help to you on this issue. Ophthamologists are the doctors needed to treat the eye disease.
In addition, radiation to the eye muscles is a temporary fix — as you have seen. It can help for a while, but if the eye muscles are still under antibody attack, the symptoms can return. There is a "hot" phase to the eye disease, during which there is progressive worsening of the symptoms, and this phase typically lasts 18 months to 3 years. Then there is a period of time when the symptoms start to improve, followed by a long, perhaps permanent period when the eye condition has stabilized. This last phase is called the "cold" phase. ONce the cold phase has been established, our eye doctors can intervene surgically to correct issues caused by the TED. They are reluctant to use surgery (typically) until this phase, because there is a chance that a surgery done during the hot phase of the disease will prove to be too much once the cold phase establishes itself. (Remember, our symptoms typically abate once the hot phase stops.) The only time I’ve heard of surgery being used during the hot phase is when the optic nerve is in direct peril due to the swelling muscles. Typically our doctors use steroids and radiation during the hot phase to try to improve things.
I have no information about the safety of multiple eye orbit radiations, but perhaps some other faciliator here is more knowledgable about that than I am. And I have no answers for the dental question, either.
in reply to: FINALLY HYPO #1066269I was started at 100. Some endos try to estimate how much we will need right away, planning to make adjustments up or down as needed. Some endos start people out very, very low and work their way slowly upwards.
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