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in reply to: RAI & Goiter Shrinkage #1169828
Basically, all a "goiter" is, is an enlarged thyroid gland. So there is typically some shrinkage through either surgery or RAI. Whether or not, in your case, you will get the amount of elimination that you want, as quickly as you want, with RAI, is something none of us here can tell you. Your endo’s estimate is perhaps the best one to go by.
Wishing you good luck with your decision.
in reply to: Finally chose a treatment. Surgery it is! #1169824You did the right thing by checking with the pharmacist. If the pharmacist checked the Rx, as I assume he/she did, then you are good to go with that dose. I don’t know if it makes any difference whether you take them separated by twelve hours or not. If you were taking PTU, it would make a difference. Methimazole often gets taken only once a day. If you are certain that you heard your doctor say "twice a day" then separate them, until you can talk with the doctor. But I don’t think you should take more than the pharmacist indicated on the Rx bottle until you talk with the doctor, or with someone in your doctor’s office who can check your file and see what the doctor actually wrote. The one thing you should not rely on is your memory of what was said. Memory gets mangled at times, especially when we are taking in lots of info all at once, or are under stress (as you are, coming to this decision). We all think our memories are carved in stone, when in reality they are more like granules suspended in a liquid.
in reply to: What do I need to know? #1169836Hi, Samantha:
You must go to the doctor somehow to keep your levels in check. I realize that without health insurance that makes things extremely difficult, but without proper medication, you will be making your long-term health issues worse, rather than better. The racing heart issue is particularly troubling, because if you are hyperthyroid (which is often demonstrated by the racing heart), your heart is in danger of being worn out. So, you have to find a way to see a doctor, and get proper, consistent medical care. GPs can, in a pinch, serve us reasonably well. Clinics are cropping up in major cities, so there might be one near you, and sometimes there is consistency in the medical staff, which would be preferable to a round-robin of doctors seeing you. You might be able to work out a payment schedule if you have a GP — paying a certain amount that you can budget, each month. Sometimes, if rarely, our doctors will take slightly less if we pay immediately, in cash for the visit. You can always ask. I found myself, a few years ago, living six months a year without health insurance, due to some fine print in our health insurance policy. And, of course, I found myself having to pay for procedures that cropped up unexpectedly. I found a HUGE difference if I paid in cash, rather than via health insurance. So, sometimes it just takes a bit of work, but it is possible to find ways around the lack of insurance that don’t include ignoring your very real health issues. Others here may have other helpful suggestions as to how to find help. But do get help.
in reply to: Anyone NOT gain weight after RAI? and VENT #1064896Weight gain is to be expected if any of the weight you lost was muscle weight. And, a part of our weight loss IS muscle loss. Muscle weighs more than other tissues, but losing it is a bad form of weight loss. We do regain muscle mass after our thyroid levels are back to controlled normal. My experience with this whole process is to be sensible and NOT fret about weight gain, but BE PROACTIVE. By that I mean eliminate non-nutritional sources of calories. Eliminate candies, cookies, cakes, fried foods, etc. for the moment. Eat well, nutrition-wise: your body needs the nutrients. But ruthlessly eliminate the non-nutritional calories. If you respond like I did to this type of "diet" you will not see excessive weight gain. Some weight gain, yes, but your clothing will still fit.
And, you cannot necessarily tell what your levels are by how you feel. Other issues factor in to how you "feel." You do "know" your body better than anyone. But it could well be that what you are feeling has more to do with something else than thyroid levels. My own experience? I’ve felt fine and had my routine blood work show a TSH of 2.0. I’ve felt symptoms I associated with hyper and gone in and had my blood work show a TSH of 2.0. I have felt like I absolutely MUST be hypo, and gone in and had a blood test show a TSH of ….yes, 2.0. Obviously, not all at once, but over time. It taught me a lot about trusting those blood tests. Raising my replacement hormone when I felt fine, but it showed "hypo," did NOT result in me feeling worse. Sticking things out when I thought things were wrong, but the tests showed normal, over a brief period of time, showed me that I returned to feeling normal after whatever else was going on subsided. You may need to experience these things for yourself.
in reply to: Graves’ treatment prior to pregnancy… #1169855Another perspective, snowboo, about the "going hypothyroid for life," issue that you raised. The terms "hyperthyroid" and "hypothyroid" are technical definitions which relate to thyroid hormone levels. Hyperthyroid simply means that you have too much thyroid hormone in your body. Hypothyroid means you have too little thyroid hormone in your body. But when we take replacement hormone, or antithyroid meds, the terms no longer apply. We are not hyperthyroid when we are on the proper dose of antithyroid meds; we are not hypothyroid when we are on the proper dose of replacement hormone. One additional factoid: replacement hormone is chemically identical to our own thyroxin (T4). It works exactly the same way naturally produced thyroxin does. It’s only side effects are if you have too much of it (you become hyperthyroid) or too little (you become hypothyroid). Occasionally individuals can prove to be allergic to some of the inert ingredients used to turn the chemical into pill form. But there are many different formulations, including some that eliminate food dyes, to get around any problem like that.
in reply to: Getting Through this.. #1170043Good luck.
in reply to: New here. My journey with Graves #1062223How you take the replacement hormone is important. You need to take it first thing in the morning, on an empty stomach, and then wait a minimum of half an hour before eating anything. And it is supposedly best to take it with a significant wash of water. What that does is move the pill right along into the intestines, where is starts getting absorbed into the blood, BEFORE any food comes in. There are elements in foods (typically things like iron, especially) which can bind with the replacement hormone molecules and prevent them from being absorbed into the blood. If you eat too soon, there can be fluctuations in the amount of hormone that makes it into your body, each day being potentially different. By waiting before you eat, you make sure that a consistent dose goes in, and this, in the long term, will make it easier for your doctor to figure out what dose of replacement you need. Also, separate your replacement pill and any vitamin or calcium supplements by at least four hours. Same reason.
Wishing you good luck, and good health soon.
in reply to: 1st RAI didn’t work -must do it again #1169884Hi, Nicoletta:
It’s not unheard of to have to have a second dose of RAI. It happens about 10% of the time, from what I’ve been told. What is somewhat unusual, though, is the timing. Typically we are made to wait months, not weeks. If Ski sees this post, she will undoubtedly write you, because she had to have a second RAI. (Also, my mom did, as well.)
That said, the dose of RAI that we get as Graves patients is significantly less than the dose given to people with thyroid cancer, who have had their thyroid removed surgically BEFORE their RAI. Typically they get at least five times (or more) the dose we do. So even if you add your second dose to the mix, you would still, most likely, be getting lots less radiation than they do. And their level of radiation has not proven to be harmful, long-term, to them. Obviously, it would have been better for it to work the first time around, but it isn’t necessarily something to be afraid of having to do twice.
That said, I would want to have the doctor’s best guess as to WHY it didn’t work. Was too little given? Had there not been enough time between stopping the antithyroid meds and the RAI dose? It would help to maximize the possibilities of a second dose actually working, if there was analysis of why things went wrong the first time around. In Ski’s case, for example, the dosing doctor gave her too little the first time, trying for "euthroid" (normal levels of hormone, with no need for medication) rather than elimination of the thyroid. But there might be other reasons.
Also, MnMama has just posted to talk about her second dose of RAI issues. You might want to read her thread.
Wishing you good luck
in reply to: Husband Trying to Cope… #1169636Well, GinaLco, if I were you, I would find me another endocrinologist. It is possible that whatever is going on is not your thyroid….but it is your doctor’s responsibility to look for what IS causing your problem. There’s a tendency for endos to say, "It’s not your thyroid," when we come in and insist that whatever physical issue is plaguing us MUST be thyroid related. If our levels are normal, they will often use those words. We must turn it back on them. "Well, if it’s not the thyroid, what IS going on?" Any doctor worth your health dollars needs to continue looking,and not say, as you indicate yours did, that the line stops at the thyroid.
in reply to: Methimazole roller coaster? #1169894Hi, trirunner. Congrats on the fifth place finish. That is awesome!
I’m curious about what your doctor thinks about the cause of the constant fluctuations on methimazole. It is not a good place to be for nine months. Usually, typically, people get onto some steady dose of methimazole much quicker. Occasional tweaks are to be expected because the disease is autoimmune. Antibody levels do rise and fall for no well-understood reason, but every few weeks is not typical.
I want to address your issue of "choosing to be hypo" for the rest of your life, and suggest a different way of looking at it. I had RAI in 1996, and have been healthy (thyroid-wise) ever since. I am not ever hypo. Well, that’s a bit much, I have rarely, but occasionally, in these past 15 years, needed to raise the dose of my replacement hormone to bring it either back into normal, or tweak it into a slightly higher state of normal. But as for feeling hypo, having nasty hypo symptoms, being really hypo? Never. Replacement hormone IS thyroid hormone. So, as long as we are on the proper dose of it, we are not hypothyroid. Hypo is a technical term referring to a lack of thyroid hormone. Replacement hormone is chemically identical to T4, and works exactly like T4 produced in the body.
The goal with both surgery and RAI is usually to get rid of a significant portion of the thyroid, so much that those fluctuations in antibody levels — the things that are making you move between hypo and hyper — can no longer plague our lives.
Uncontrollable weight gain is NOT a given with thyroid removal. We do regain some weight if we have lost muscle — the muscle comes back. But you’ve already experienced some of that with the antithyroid med. Once we get to stabilized normal levels of thyroid hormone, our weight issues level revert to normal. Given that you are an athlete, and exercise regularly (something which a lot of folks do not do) you should not expect a problem. So do not use the fear of weight gain as a rationale for eliminating the possibility of RAI or surgery.
in reply to: Stress and the heightening of symptoms #1169900What we know (or think we know) is that TSH is a type of "running average" of our actual thyroid hormone levels. Thyroid hormone levels — especially the T3 — can be up and down more quickly than the TSH moves. So, if you want, think of it as T4 and T3 levels being a "snapshot," while the TSH is a "timed exposure." It usually lags a bit behind our normalizing thyroid levels. Conversely, it can lag a bit behind if the thyroid levels are going "off" again.
More importantly, though, it takes some time AT normal levels of thyroid hormone for our symptoms of hyper to go away completely. I think of it in terms of the body needing time to heal from whatever damage is done. Regardless, there is no magic "get to normal levels and feel instantly and completely normal" experience. We gradually return to our old selves after weeks or months AT normal levels of thyroid.
Also, stress causes the release into the body of other chemicals from the endocrine system….especially the adrenals, I believe. So the hormone soup running through your veins changes with stress, changing the internal balance again.
in reply to: RAI treatment #1170010Wishing you well, JaneG.
in reply to: What to ask surgeon re thyroidectomy? #1169931Hi, REbecca:
If you haven’t seen the post yet, odapoda, wrote today on the topic "Back. Missing one thyroid." (Or wording close to that…..) Anyway, it sounds like she went through somewhat the same thing you are experiencing. You might want to check it out.
in reply to: Back. Missing one thyroid #1169904We love hearing good news like this. And it’s really a help (as you know) to the folks who are still feeling awful. Thanks for posting.
in reply to: Getting Through this.. #1170040Hi, supermom:
Don’t get bummed out too soon. We DO get well again. You are new in the process, and it just takes time. Meanwhile, my suggestion is to prioritize like mad. Do the absolutely necessary stuff — like taking care of the 1 year old. But also put some of your own needs in that list, near the top. Do you feel better when you take a short walk in the sun with dog and child? Then DO IT. If not, let it go for the moment. You will be able to get back to it once your body has healed.
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