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I was on a beta blocker throughout after my diagnosis. Actually, I was put on a beta blocker even before my diagnosis of hyperthyroidism. My endo instructed me to double the dose “if needed” approximately one week after RAI when stored supplies of thyroid hormone get dumped into the blood by damaged thyroid cells. I felt the need for that double dose for, I think, two or three days, after which symptoms subsided rather quickly.
I think it helps to know that there is a rather finite limit to the extra hyperness. While T4 has a half life of 8.1 days, it must be converted to T3 in order for the cells to use it. T3, the more potent form of thyroid hormone, has a half life of approx. three-quarters of ONE day, so we get quite revved when there is too much of it, but it goes away rather quickly if no more is hitting the blood. The damaged cells are not making “new” hormone once RAI has damaged them sufficiently, so the extra jitters time is limited.
in reply to: Finally good numbers after 5+ years treatment #1170877“So, therefore if the Thyroid is considered “diseased”, then so must be the entire axis, because the Hypothalmus & Pituitary are failing in their role of regulating thyroid hormone.”
Actually, the entire body is diseased when we are hyperthyroid. That’s where I differ from folks who insist on focussing on the antibodies. The antibody itself is not disrupting the function of the heart, the digestive system, the muscles, the bone, the pituitary, etc. The antibody is disrupting the function of the thyroid. The thyroid, in turn, is causing the disease to the rest of the body by pouring out too much hormone. And the evidence of that is that when we turn the thyroid off (either with meds or by removal) we can regain our health, living, all the while, with the pesky antibody still lurking in its corners of the body.
in reply to: Finally good numbers after 5+ years treatment #1170871From a recent poster: “It is not a disease of the thyroid, it is an autoimmune disease where Thyroid Receptor antibodies antagonise TSH receptors in the thyroid.”
This is not “fact” , which is what was suggested by the poster. Yes, Graves is caused by thyroid receptor antibodies, yada yada. But it IS a disease of the thyroid. Or, to put it another way, the thyroid IS diseased when we have Graves.
Look up the defintion of disease when applied to medical circumstances. In any dictionary.
“1. A pathological condition of a part, organ, or system of an organism resulting from various causes, such as infection, genetic defect, or environmental stress, and characterized by an identifiable group of signs or symptoms.”
“: a condition of the living animal or plant body or of one of its parts that impairs normal functioning and is typically manifested by distinguishing signs and symptoms : sickness, malady.”
Or:
“any deviation from or interruption of the normal structure or function of any body part, organ, or system that is manifested by a characteristic set of symptoms and signs and whose etiology, pathology, and prognosis may be known or unknown.”
Nowhere, in the definition of “disease” does the causative agent decide that something is, or is not diseased. So, the reasoning in the poster’s article was specious, flawed, and completely irrelevant.
When we have a diagnosis of Graves, our thyroids are, BY DEFINITION, diseased. Period. Full stop.
This does not mean that one treatment option is preferable to another, which is why I suspect some folks try to insist that our thyroids are not diseased. We have three potential treatment options that have been shown to work to control the adverse activity of our aberrant antibodies. Some of us have better results with one of the options over another.
in reply to: 17 year old w/ Graves #1171407I corresponded for quite a long period of time with a woman I “met” online, named Anne. She seemd a lovely person, whose heart had been adversely impacted by hyperthyroidism. She, like your brother, died of heart failure, eventually. I think that for some of us, the heart may be more vulnerable than for others. But, also, some of us go undiagnosed for too long and that takes its toll on the heart muscle.
The key is getting adequate treatment soon enough to avoid hyperthyroidism damaging the heart and other body systems. It is important to find a treatment that “works” to control thyroid hormone levels.
There are two potential treatment options that have been demonstrated over time to work: antithyroid meds and removal of the thyroid. Most of us, if lucky enough to be diagnosed soon enough, get well again.
in reply to: itchy eyes #1171402First off, concentration is a big issue until we regain control of our thyroid levels. Her teachers need to know that she is ill, and that concentration is iffy. I don’t know how to direct you to it, but we have had a helpful pamphlet available, through the main website, that explains some of the education issues that children with Graves face.
Our eyes become very dry. If the itchiness is due to dry eyes, then the best thing to do is get some artificial tears. Visine is not artificial tears. Artificial tears come in a variety of brands and delivery methods. The best — albeit most expensive — way is to get the drops that come preservative free. The preservatives used in some of the drops can become a problem over time. The preservative free type have individual dose packets. Sometimes we need to use these drops very frequently to get helpful results. If it is dry eyes, your daughter will get some relief, and become able to tell when she needs another few drops.
Working at the computer, reading, etc. makes our dry eyes more dry. There is a tendency not to blink as frequently as necessary. So, conciously blinking more can also help.
If here itchy feelings are more generalized as well as in the eyes, then you need to talk with her doctors about the possibility of an allergic reaction to something — particularly a newly started drug. When I take certain types of drugs, I itch — including my eyelashes. If it is an allergic reaction, it will not go away without intervention.
in reply to: grave affecting pms? #1171393When this board first started, there was a woman on antithyroid drugs who swore that once a month the hyper symptoms got worse. She kept a log for a few months to show her doctor. I do not remember the outcome, but keeping a log can help some times.
in reply to: Palpitations and Hyperactivity after RAI? #1171387Well, I do empathize with you. It isn’t pleasant to go hyper again. It’s such an awful feeling. But going off the meds for a week helps to make the thyroid cells more “thirsty” for iodine, and increases the likelihood that the RAI will get taken into the thyroid rather than dissoved in the body’s fluids and excreted without being able to do it’s job.
I do hope you are feeling much better, and soon.
The most common times for us (women, especially) to develop an autoimmune disease are puberty, pregnancy and menopause. I’m not sure what additional ages are more common for guys. But for women, those hormonal change periods are the most dangerous.
Boards like ours are most commonly visited by people who are newly diagnosed. Some of the folks on boards are people who, for one reason or another, are suffering complications of the disease. Most people who get well again, abandon coming to the board. So we are skewed towards disease, and towards newly diagnosed disease. That doesn’t mean the “more people are being dx’d with Graves” than in the past.
Autoimmune diseases tend to have a genetic link. Not direct — like eye color or whatever — but a “predisposition” it’s called. There are lots of different autoimmune problems besides thyroid issues. And there are, of course, mutation possibilities. Some of us may not know of a relative with an autoimmune.
What sets off an autoimmune disease? Only speculation here. It is currently thought that some type of “major” life stress can be a “trigger.” But other theories include viruses and other causative agents. Nobody knows for sure.
in reply to: The Shakes #1171352Regarding the shakes — you will get rid of the shakes when you have gotten your thyroid hormone levels under control. Some things, like beta blockers, xanax, etc., might have an effect on the shakes, but will simply mask your problem. Your problem is too much thyroid hormone. It sounds like, to date, you are not on any treatment to control your thyroid levels. That is not a good idea. Unless your endo has said otherwise, most of us start with the antithyroid drugs. Yes, there are possible adverse consequences. You are living with a worse choice, if you are not getting your thyroid levels under control. Taking the ATDs gives us time to mull over our options, seek second opinions if we want, etc., without risking much in the way of health consequences.
As to not having insurance for the local endo. Think in terms of budgeting him in, at least temporarily. I spent years paying out of pocket for my endo. it was worth it. She wasn’t all that expensive, and not nearly as expensive as intensive care had I gone into thyroid storm.
It’s all a matter of perspective, really. The only “perfect” option is good health. When we don’t have good health, the options are never “perfect” but most of them are lots better than the alternative (hyperthyroidism, in this case).
in reply to: Fact or Fiction???? #1171317Hi, and welcome to the board.
It is dangerous to have any type of surgery while hyperthyroid. To operate on the thyroid itself while hyperthyroid is even more dangerous. Yes, your doctor was correct. People who do a surgical removal of their thyroids have to have their levels controlled somehow beforehand, or there is an added risk of major complications.
It is difficult to tell whether you were at all compliant while on the methimazole. You admitted to not taking it consistently at some points in time. That is a huge problem. You won’t feel better on the drug unless you are on the proper dose of it, and it is controlling your thyroid levels properly. And the only way to find the proper dose is to take it exactly the way the doctor prescribes it. You tie your doctor’s hands by taking it some times but not always.
If, however, there was a long period of time when you were on it absolutely the way you were supposed to be then it could well be that you have such raging thyroid problems that the drug isn’t likely to work well.
The fact that you have head to toe allergic welts might be due to the methimazole. Or some other drug you are on. I would definitely suggest that you explore with one of your doctors, the possibility that a drug interaction is causing that particular problem. Methimazole could do it, but so could other drugs, or a combination of drugs you have been prescribed.
in reply to: diagnosed with Graves Disease Today..4-20-12 #1171302Hi, vinnyfish, and welcome to our board.
I’m curious about the “no sun” comment from your doctor. I hadn’t heard of that type of restriction before. I guess when I sign off here, I’ll go out onto the Web and see what I can find.
And, how great that your doctor gave your information about our site! What we try to do here is answer questions that people have about what everything means (TSH, T4,that sort of thing) and provide some moral support while you are getting stabilized.
While I know that it is unpleasant to get a diagnosis like this, please know that we have three treatment options that work to give us back our health. We CAN get healthy again.
in reply to: Fast RAI results – Need Advice about Dr #1171292I hope you have a fabulous time in Hawaii.
I would ask you to think about a few questions here, Lily. I am assuming that because of your other autoimmune issues, that the antithyroid drugs are not recommended. I could be wrong about that, but if that is the case, and you’ve been told your “best” medical option is to remove your thyroid, here are some thoughts.
It does not matter what is causing a diseased body part — antibodies or bacteria or viral agents can cause disease in a body part. Sometimes that disease agent can be stopped with antibiotics or the body’s own immune system, but sometimes it cannot. To use your logic: In appendicitis, the appendix isn’t at fault, bacteria is growing in it. Why remove it?. If you had gangrene in your feet, due to diabetes or something, it is n’t the foot that is diseased, according to your logic, it is the gangrene. So, why remove the foot? According to my logic: We remove body parts that are not essential if that is the best way to get well again, and nothing else will work, or work as well. The thyroid performs an important function, yes. But many people THRIVE through their lives without a thyroid. Talk to a thyroid cancer patient and ask them if they regret removing their thyroid? We are blessed with a replacement hormone that works well, so removing the thyroid is a very viable option.
You could become an invalid, or die, if you do not treat your hyperthyroidism effectively. There are NO alternative treatments that work to control our thyroid hormone levels. You cannot “wait” for remission, because every day that you wait you are losing muscle and losing bone. Your heart action can go haywire without warning, when you are hyperthyroid. It is significantly more dangerous to wait for remission when you are hyperthyroid than it is to wait for remission when you have lupus, or RA, or many other autoimmune problems. A wonky thyroid can be lethal.
in reply to: Fast RAI results – Need Advice about Dr #1171290I realize that with the difficulty getting in touch with your doctor that you are feeling less than confidant with him/her. Nevertheless, it is STANDARD for us to have to wait a minimum of six to eight weeks before checking our blood levels again. My endo prefers that I wait three months, if possible. The reason for this is that it takes at least that long for the TSH levels to catch up with changing thyroid hormone levels. And it is the TSH that our doctors still pay the most attention to. If we do not wait that period of time, what can happen is that you could go on a hormonal roller coaster. The scenario is something like this: we go hypo, we get an (estimated) dose of replacement hormone, we feel symptoms that tell us we are still hypo but we do not wait the eight weeks, and we get ourselves tested, and, yes, the test still shows hypo, so the doctor raises the dose. Then, a month in, we’re feeling distinctly hyper, so we go in, and yes, indeed we are hyper. So, lower the dose again. We still feel hyper a month later, go in…..dose gets lowered…. I’ve been there. Done that. Have the moldy T-shirt. It happened once, early after my RAI. It is much, much better to wait out the symptoms for the eight weeks to be sure that the test results accurately convey reality. The TSH is a type of running average of our actual thyroid hormone levels. And while it makes sense, from a layman’s point of view, to look at the actual levels of thyroid hormone, rather than a lagging running average, there is a very good reason for watching the TSH: The test for TSH is much better at this point in time than the test for actual thyroid hormone levels. It measures smaller amounts of it, accurately. And, apparently thyroid levels themselves can fluctuate up and down more quickly, so the view “over time” which TSH gives helps to protect us from going hyper, hypo, hyper and hypo over and over again.
Another thing I will tell you is that the level of hypo that you have so far experienced is not even close to dangerous. I could feel you panicking. And it is preferable to catch hypo early, rather than to let it drag on. But thyroid cancer patients have to go SEVERELY hypo periodically (or at least they used to) in order for them to have certain tests to make sure their cancer is still gone. Their TSH numbers are astronomical compared to ours when they are going through this testing. (And I cannot imagine how they must feel during this time.) I mention this only to reassure you that having a TSH of 7.8 is not something to panic about. And your doctor’s reaction to it was not irrational. So, even if you feel that the dose of replacement you are on may be too low, even if you continue to feel hypo symptoms, try to wait it out calmly. I do understand that this is hard to do. But in the long run,you will get regulated to the replacement hormone quicker, and that is a good objective.
Be sure to talk with you pharmacist about the best way to take the replacement hormone. It does matter.
in reply to: Having trouble choosing treatment option! #1171272One sentence came leaping out at me in the first study you sited, Kimberly. “More than 1 year after treatment, an increased risk of cancer mortality was seen among patients treated exclusively with antithyroid drugs.” It seems to me that sentence has been overlooked? And that, if it were to be true — and I realize that these studies often show results that can never be duplicated — then any study of RAI would have to control for the length of time that anyone spent on antithyroid drugs, before implicating the RAI. I think it shows how beastly difficult it is to isolate factors in human studies.
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