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in reply to: TSH Testing Only Once Stabilized Post RAI #1172133
TSH does not fluctuate easily. It is a sort of running average of our thyroid hormone levels. They fluctuate more fluidly than does TSH.
There is no universal agreement among doctors as to what level of replacement hormone is best. My own endo has recently — well in the past five years or so — changed her mind about keeping my TSH at 2. And I’m well above 50. But I may be asking her about your doctor’s belief. I would just as soon not risk bone loss, or whatever else might be a possible hazard of too low a TSH.
About ten years ago, many of our doctors stopped calling the eye disease “Graves” eye disease, and began calling it thyroid eye disease, or TED. Why? Because it was cropping up in folks who had never been hyperthyroid, but who had some other form of thyroid problem. But the generations of time where it was called Graves eye disease still linger, and occasionally we find a doctor who diagnoses us with “Graves” when the eye disease appears.
Hi, and welcome to our board.
Aren’t second — and third — opinons wonderful! But I do hope while all this is going on that you are taking a med in order to protect your body from too much thyroid hormone. Many of us start out with either PTU or methimazole even if we are debating whether or not to do another treatment option. These medications act as a chemical block to the production of thyroid hormone and can often work to bring out hormone levels back to normal. Yes, they do have side effect issues, and can sometimes cause liver problems, but they are safer typically than remaining hyperthyroid.
Just some basics: with Graves the hyperthyroidism is caused by antibodies which stimulate thyroid cells to ignore the normal restraining commands of the pituitary gland, and to over produce thyroid hormone. The pituitary puts out a hormone called TSH (thyroid stimulating hormone). When there is too much thyroid hormone, our TSH levels go down so low as to be unmeasurable. Later, once we have our thyroid levels under control (by whatever means) the TSH levels will rise again, and the doctors use this as a way of determining whether or not they have managed to get our hormone levels back to a proper zone.
ALL of our treatment options deal with hyperthyroidism, not with antibody levels.
Medical science does not know how to target specific antibodies.Remission, for us, is defined as being able to go off all meds for a year or longer, while maintaining normal levels of hormone.
I think, perhaps, you may have misunderstood Dr. 2. I haven’t heard of kidney failure due to the PTU. PTU is known, however, to cause, in some patients, liver problems. It is also known, as well, that treating our thyroid problem does not necessarily eliminate the problems that might later develop with our eyes. Some studies have suggested that surgery does not lead to an immediate increase in eye symptoms, so if our eyes are already showing signs of TED, surgery is considered a better option than RAI for removing our thyroids. But people do have their thyroids surgically removed, and develop TED later anyway. And by that I do not mean that RAI causes eye problems, either. But the studies used to suggest surgery when TED already exists have shown that in a minority of patients eye symptoms can temporarily get worse after RAI. The thought is that it stimulates an immune system response, and ANYTHING that stimulates the immune system can increase our disease symptoms temporarily.
It is not at all uncommon for us to misconstrue things our doctors say, btw. Especially while we are so ill due to being hyperthyroid, it can be helpful to take a family member or friend to the consultation….someone who is not ill and someone who can listen, take notes for us. It helps to eliminate confusion that is altogether too common when we are ill.
in reply to: One month Post RAI #1171954Hey, mvk. I will be travelling next week, so Happy (Early) Birthday.
in reply to: Just received call from endo…results #1172111No thrashing — just logic. If your doctor knows precisely what dose you are taking (i.e. if you are not tweaking things off and on whimsically), then he/she can make a better estimate of what dose you NEED to provide you with the proper level of thyroid hormone. Also, and perhaps more importantly: If your doctor even suspects that you are not “compliant,” then forever when you arrive with symptoms, it will be suspected that you have been playing with your dose. Even if you swear on a thousand Bibles that you have been diligently following protocol, the doctor may distrust the symptoms you report, believing that you’ve been tinkering again. In the long run, your best interests are served by be rigorously compliant with whatever dose prescribed. Yes, this sometimes means that we are on too high, or too low a dose for a brief period of time. But over all it builds up a trusting relationship patient to doctor.
Levothyroxin is the biological equivalent of T4, so the body uses it naturally. But it is important how you take it. You must be consistent, and take it first thing in the morning with a glass of water, and then wait at least a half hour or more before eating anything. And you should wait to take supplements or vitamins until four hours after the levothyroxin. The issue is that some substances in foods (like iron) and supplements/vitamins can attach themselves to the levothyroxin and keep it from being absorbed into your blood. Or keep some of it from being absorbed. By taking it before eating anything, you assure that you are getting the same amount absorbed every day. This helps you get your levels balanced quicker, and keep them that way.
I hope you feel better soon.
in reply to: Thyroid arterial embolization #1172104And, the thing that struck me about the study you presented is that it only took into consideration 22 people. That’s a really small number. Since the study took place in 2002 (I think I remember), there should be follow up studies which reproduce the results in the past ten years. Single studies do not always hold up under subsequent scrutiny. So, before you press for the procedure, you should probably do more homework. And talk with your doctors.
in reply to: Low white blood cells on PTU. #1172101No, the protocol when the white cell count goes very low is to stop the meds. The WBC situation usually goes back to normal once the drug is stopped. I do not believe our doctors like to try the drug again, once it has proven dangerous this way. PTU is also known for being more dangerous to your liver. And you need both healthy white cell counts and a liver to be healthy.
The ONLY treatments that work to control your hyperthyroidism are the meds — which your doctor may not wish to try again — and removal of the thyroid followed by taking replacement hormone. Lots of us live healthy, happy lives without thyroids.
It is human nature to fight for survival. But sometimes we have to take the battle to a different level. It’s not just an issue of fighting, but of fighting “smart.” Usually, the antithyroid drugs like carbamazole work well to stabilize our thyroid levels. Dose changes are occasionally required, yes. It’s an autoimmune disease and antibody levels can rise or fall for no well-understood reason. While you still have your thyroid, those antibody changes will either rev thyroid hormone production up, or tune it down. You need to expect occasional dose changes.
But if you have spent two years constantly changing the dose, then it may be time for a serious sit down with the doctor, to discuss other treatment options. The drug should be working better than that.
in reply to: Seeking Support & Advice #1172071Hi, and welcome to our board.
Did your doctor say why he didn’t want you to stay on the minimal dose of methimazole that you are currently on? Some folks do opt to stay on the meds.
Hi, Abigail.
Remission for us is defined as being able to go off the meds for a year or more while maintaining normal levels of thyroid hormone. The definition has nothing to do with the antibody levels — only with the thyroid hormone levels. And if you thyroid levels are normal — as the TSH suggests — then treatments are not warranted. There are no treatments for the antibodies.
I suppose you don’t have a history of antibody levels to refer to? Because while antibody levels rise and fall for no well-understood reason, your own levels might be high over time. Putting on my Pollyanna hat for a moment, I will speculate that perhaps your antibodies are within this range normally, and that they are simply balancing one another out? (I have no medical training whatsoever, so take that comment with a grain of salt. But it strikes me as a possibility nonetheless.) In other words, you might watch for signs of hypo, but worrying about it might be a waste of time.
in reply to: how long till brain is back? #1172000I have been hesitant to mention this again — although anyone going back in my posts over time could easily pick up on it. But my experience with PTU involved serious mental fog. I was at normal levels of hormone, but still felt sick and couldn’t think. So I blamed the PTU, decided it was a drug reaction, and went with removing my thyroid. At the time, people here told me that was a mistake, that I could still have the problem but then be missing my thyroid, but I paid little attention to that idea. I have never regretted getting my thyroid removed. The brain fog went away never to return once I was off the PTU. So — my experience with the meds wasn’t a positive one. I also know, in retrospect, that I probably did not allow enough time for my body to heal AT normal levels of hormone, on the PTU, to be able to determine that it was indeed the drug that was creating the problem. So, I don’t “know.” Thus my hesitation. But I do know that individuals react differently to medications, and it is something to keep in mind. Some of us do have adverse reactions that are not necessarily typical, but which are real. I was on a HUGE dose of PTU to get those normal levels of hormone (I was taking what was a maximum level dose according to the drug manuals), so it’s entirely possible that I simply couldn’t tolerate it, while others can. But, if the brain fog persists; if you don’t see improvement (however slight) over time; consider that you might not be tolerating the drug well.
in reply to: weird eye sensations should I worry? #1172021To Kells1: I would suggest you edit your great list about how to cope with TED. You put on it that folks need a couple of pillows to elevate the head. While we do often need our head elevated to reduce overnight swelling, using pillows can throw off some folks’ spines. Our heads can often be more safely elevated by putting wood blocks or something similar under the head of the bed. If your bed sits on one of those metal frames for instance, it is not too hard to put a touch of height at the head end of things. That way your spine is fully supported and not “bent” (folded, mutilated or spindled….
)Please try to take one day at a time. Typically, that is more than enough for any of us to handle. Right now you are worrying, in advance, about something that may not happen. Don’t get me wrong, you might indeed find yourself hypo, and feeling depressed. But, you might not. I can only give you anecdotal comments of my own — which are no more or less valid than your own anecdotal experiences. But I have felt hyper/hypo/completely fine –at different points in time, obviously — when I have had blood work done, and found out that my TSH level was 2.0. I have felt completely OK, and found out that I had a TSH of 13 — most definitely way, way over the line into hypoland. I was not gaining weight, either. Go figure.
Anyway, if we go in feeling hypo, and the tests show that we are in fact hypo, then we begin to think that we know when we are hypo. Or hyper. Or just fine. The tests reinforce our subjective opinion, in other words. My experience (16 years worth of blood tests) has been that occasionally I am “right” and my levels are off. More often than not, however, I don’t know what my TSH levels will show. I also thought — for a long, long while — that I felt better at the hypo end of normal than at the hyper end. I have been proven wrong on that score as well.
Essentially, there are too many things that go on in our bodies and in our lives that impact how we feel. We are really complicated beings. TSH is not the end all and the be all for how we feel going forward.
in reply to: diet and graves diease #1172060Hi, and welcome to our board. Whether or not anyone out in cyberland was ever misdiagnosed is irrelevant. If you had blood tests done, and your blood work showed that you were hyperthyroid, you need to be on meds to control the thyroid hormone levels. It doesn’t matter what is causing it — although sometimes what is causing it can dictate one treatment option as preferable to another. Taking methimazole is standard.
There are a limited number of things that can cause our thyroids to go wonky. Graves is the #1 cause, by far. Graves involves the entire thyroid. If you had an uptake and scan test done, and the word “diffuse” was used to describe the uptake, then you have Graves typically. Sometimes, people have sections of their thyroids that go wonky, while the rest of the thyroid remains normal. Sometimes people get a viral infection that causes the thyroid to run amok. There would be signs of infection (fever, soreness in the throat area,e tc.) Some people, immediately after having a baby, get post-partum thyroiditis that makes them hyperthyroid for a brief period of time. But, again, it does not matter. Having too much thyroid hormone is HORRIBLE for your body, and it needs to be treated.
Do not be misled by the fact that your T3 and T4 levels are normal while you are on the methimazole. That is what is supposed to happen. This medication acts as a chemical block to the production of thyroid hormone. We need to take enough of it to keep us in normal levels of hormone. If you didn’t need it, it would be making you hypothyroid.
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