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in reply to: RAI and pets #1062943
Some endos do put their patients back on antithyroid meds after RAI. As to the timing, ask your endo if you can have the blood tests done sooner if you start to find multiple symptoms of hypothyroid. I had my first blood test done five weeks after RAI but the timing is guess work — some folks take longer to go hypothyroid, others don’t. RAI does not work over night — it takes a few weeks at least to fully "register."
in reply to: Upstate SC// Advice? #1062935Hi, and welcome to our bulletin board.
Your symptoms sound completely familiar. Even the part about not losing weight. Yes, it is more common for people to lose weight while hyperthyroid, but quite a few gain weight instead. Getting the thyroid under control and the hormone levels back to normal is the first step in regaining control over weight issues, whether you’ve gained or lost weight. Part of the problem is that we lose actual muscle while hyperthyroid, and muscle is a major component of our metabolic rate. Muscle weighs more than other body tissues, but it burns more calories, even when we’re not using it. Without strong muscle, we cannot eat as much without gaining weight. Getting the thyroid under control allows our muscle function to return to normal over time, raising our metabolism bit by bit.
You might go onto the home page for NGDF, and look for support groups in your area. Or call the main number if you would like to speak with someone directly.
Good luck.
in reply to: RAI and pets #1062941I got 8 millicuries, and was told not to hold my dogs up against my neck area. I didn’t have to stay away from them, I just couldn’t "cuddle" them for a few days, and I did keep my distance. As to whether or not you could use your pc or your cell phone? I haven’t ever heard of that — but someone else here might chime in. I know that I used my computer after RAI, though, and I don’t recall that I had any problems with it. It is entirely possible that someone, somewhere, had their cell phone quit working after RAI. That doesn’t mean that the cell phone stopped because of the RAI. It could be coincidence. Just because something follows something else in time, once, doesn’t mean there’s cause and effect. But that’s a guess on my part. I don’t know who you could ask to find out for sure.
Good luck with you RAI treatment.
in reply to: Fluctuating TSH levels #1062970I want to reinforce what Shirley just said so that you don’t miss it: waiting the full three months between blood tests can make a positive difference. More often than not, when I read of people having problems with their replacement regime, they indicate that they are going back really frequently to have their levels checked. If you change the dose BEFORE it has had a chance to adequately register in the various blood test categories, you can find yourself on a hormonal yo yo. It is annoying to stay on a dose you feel is wrong for three months, I know. But my experience, too, is that it pays off in the end, with a quicker resolution to the yo-yo problem.
I don’t know quite how to help. Other than to provide a bit of encouragement — slight as it might be. If you are taking an antithyroid medication (methimazole or PTU), it is designed to control the production of thyroid hormone. Taking just the right amount matters, so it is important to take it as directed all the time, AND get those periodic blood tests. It may not be working perfectly, which you seem to indicate, but if it IS working somewhat to control your levels, you are better off than you would be without it. The best thing you might be able to do for yourself for the time being is precisely what it sounds like you are doing: taking the meds and getting the blood work done.
The blood tests as the free clinic are probably looking at whether or not you are on the correct dose of the meds, and possibly are looking at things like white cell count or liver function. But if they are looking at the thyroid numbers too (to tell if you are on the correct dose), then adjustments would be made to the meds if that were necessary. Again, that is a good thing that is happening.
Unfortunately, our health care system is not designed to help people like you yet. And using the emergency room, as necessary, while wildly expensive for the taxpayers, may be your only safety net until your parents’ insurance kicks in. USE IT if you need it. Some states are talking about doing away with even that bit of the safety net.
In the meantime, do what you can to keep yourself healthy — or healthiER. Make sure you get appropriate rest, appropriate nutrition. Anything you can do right now to improve your health is going to be a big help right now. Your body, for example, doesn’t need empty calories — it needs nutritious calories — fruits, vegetables, protein. Anything you can do to help yourself now will pay off in the long run.
in reply to: question about cold medicine #1062957Cold medicines typically contain a medication that can increase heart rate, among other things. It is my understanding that if our thyroid has been removed, those warnings no longer pertain to us. It might also be true that if you are well-controlled on antithyroid meds, you might be able to take them, too. BUT, talk with your doctor’s office first to double check — both my information and whether you need to be concerned.
In the interim (it is, after all, the weekend) using nose drops might help. I was also advised to take a product called Mucinex, which is essentially the main ingredient in Robitussin cough medicine in a pill form. It loosens up the congestion quite nicely, and I am unaware of warnings on the label that talk of thyroid condition. But check.
in reply to: Want to have baby #1063003I’m unsure why the nurse answered your question that way. I can relate my experience, though. I was on ATDs for some months (cannot remember now how many) before deciding to do RAI. Prior to RAI I had to go off the meds for a week. I was on PTU, which has a very short "life span" in the body, so I became very hyper in that week. Not, perhaps, as hyper as I would have been had I gone directly to RAI without meds, but still, really hyper. The reason, I was told, was so that the thyroid cells would need iodine and have space for it (the RAI form of iodine). They didn’t want the antithyroid meds blocking the uptake of iodine (and, therefore, blocking the uptake of the RAI).
Yes, the size of your thyroid does enter into the decision for the dose of RAI. Usually/often(?), our doctors order an "uptake and scan" to provide them with more concrete information about the dose required. For this test we are given a very small amount of a different radioisotope of iodine. It is not the treatment form of RAI (which is I131). This test isotope has an even shorter lifespan than RAI does. Anyway, we are given a measured amount and told to come back, typically a day later (but sometimes a few hours later). At that time, the amount of the test iodine that made its way to our thyroids is measured (the "uptake"). That involved (for me) sitting in front of a microphone-like object that clicked like a geiger counter. Then, I was taken to a table where a machine passed slowly over my neck area, making "pictures" of the thyroid (the "scan"). This test is sometimes done as a diagnostic tool for Graves. The scan shows where precisely the iodine was collected in the thyroid. Sometimes its all over (Graves), but sometimes it can be in isolated clumps (autonomous nodes in med-speak). The scan also shows the size of the thyroid. From the amount of uptake (given in percentages typically), combined with the size of the thyroid, our doctors can come up with an amount of RAI to give. But I suspect endos are pretty good, also, at estimating size (if not uptake) from the way they touch the thyroid area when they give us their exams.
The thing is, if you want to assure that you only need one RAI, then the goal should be to "ablate" the thyroid. That means get rid of most, if not all of it. It is important to talk with the endo about that aspect of things. The endo does communicate with the doctor who administers the RAI. Ski’s RAI doc didn’t listen, apparently, and she had to do it twice. But the medical term you need to know in this case is "ablate."
As to needing to stay away from others for a few days. Yes, sort of. A lot depends upon the dose of RAI you specifically are given. A lot relates to the type of people with whom you spend most of your time. We need to put space between ourselves and others specifically to protect them from [i:3tclkjfu][b:3tclkjfu]unnecessary[/b:3tclkjfu][/i:3tclkjfu] exposure to radiation. Radiation exposures — whether they be from sunshine, or from xrays, or whatever — accumulate in the body over our lifetimes. Avoiding unnecessary exposure is beneficial. So, the reason to keep space between us is the same reason that the xray technician leaves the room before turning on your dental xray. It isn’t that the exposure by itself would be harmful: it is that all the exposures, over time, could be harmful. If you have small children, you would need to be more careful. ( I’m sorry, I cannot remember what you’ve said on this point.) Typically, with small children and small animal pets, we tend to hold them close to our necks — hugs, etc. And the smaller the individual (age-wise, particularly), or the smaller the pet, the more likely that radiation exposure could, possibly, be more damaging. There are a few other, more specific types of precautions that we could talk about later, if you do decide to have RAI. But keeping to yourself for a few days is a typical instruction.
in reply to: Want to have baby #1062991I understand not wanting the anesthetic: I am petrified of general anesthesia. I only do it as a last resort. So, I had RAI, and no problems.
Part of the "no problems" however, may be that I had a more realistic view of what RAI would, and would not, do prior to doing it. I didn’t expect (as many people seem to do) any "instant" fix. I knew it would take a few weeks before I would even be able to start replacement hormone. I knew that once I started replacement, there could be a few months spent tinkering with the dose, to get it right. I also did not expect to feel "normal" again right away. I don’t precisely know why that was. Perhaps it was the information on this board. I knew that it would take some time for my body to heal from being hyperthyroid. Some people expect to feel normal right away — and it can be a frustration for them when they don’t. What I kept track of, instead, was progress. Every day I felt even a little bit better, could sleep a little bit longer, was just a wee bit less crazed and jangly, was a blessing. I noticed those things. And it helped me to stay patient through the healing process.
I mention this because even if you decide to do surgery, there will be a process of healing. You would start replacement hormone a bit sooner, because the thyroid tissue is gone all at once, not over a bit of time (as with RAI). But the tinkering with the dose will be similar; and the need for time "at" normal hormone levels for your body to heal will be the same.
Wishing you good luck with your choice.
I know that this is a horrible situation to find yourself in, BUSYMOM, but I would like to inject a wee bit of reality here for you to mull over. You can live, and live well, without a thyroid. You cannot live without a liver.
We, here, have all been faced with the reality of having an autoimmune disease, and most of us have felt conflicted about the choices facing us. It’s hard to make treatment decisions, and even harder when the choice we prefer is blocked by medical reasons. But we can — and DO — live well without our thyroids. Keep that positive thought in your mind, and it may help you. I hope so, anyway.
in reply to: Graves, TED, throidectomy and steroids???? #1063268The eye disease is a separate autoimmune disease. Wonky thyroid levels can cause an aggravation of symptoms of the eye disease, but controlling your thyroid levels does not control the development of the eye disease. I had the eye disease ten years ago, and was left with only intermittent double vision. But it is always worse (the double vision) when my thyroid levels are "off." The reason is that there are six muscles (three sets) in each eye that must work together to provide single vision (as opposed to double vision). When the thyroid levels are off, those muscles are not working properly, so the symptoms like doubling increase. But this doesn’t mean that controlling the thyroid levels controls the eye DISEASE.
The eye disease is caused by antibody action, not thyroid levels. Some unfortunate people develop the eye disease without ever having out-of-whack thyroid levels. So you need to separate the two conditions in your mind when it comes to thinking about treatment issues. Taking the steroids, if needed, could save your sight. Yes, there are serious side effect issues. No question. Typically, though, steroids are not even ordered, here in the States, unless the optic nerve is threatened, and the issue becomes one of weighing possibly blindness against the side effects of the steroids. Sometimes, there can be surgical interventions to ease up the conditions around the optic nerve, but this, too, is an extreme intervention (akin to the steroids).in reply to: Surgery after RAI????? #1062967I was told long ago, that there was approximately the same incidence of needing a repeat after surgery as after RAI — 10% of folks do not go sufficiently hypothyroid, in other words, with either procedure. What matters is the amount of thyroid tissue that gets eliminated, not necessarily how it was achieved. Some doctors don’t prescribe a sufficiently high dose of RAI; some surgeons leave too much thyroid tissue during surgery.
So, it has happened to the unlucky few to need a second treatment after they tried to eliminate their thyroids. You would need to discuss with your doctor the pros and cons of doing a surgery now, or whether you should revisit RAI.
in reply to: Want to have baby #1062982As to RAI aggravating the eye disease — the jury appears to still be out. We "think" that RAI causes at least a "temporary" (and I never saw that defined) increase in symptoms of the eye disease, in 16% of patients. That was shown in a study published in the New England Journal of Medicine about ten years ago or so. The authors of that study thought they saw an increase in antibody action after RAI. Obviously, anything that stimulates the immune system, stimulates the antibodies that aggravate our autoimmune disease. That same study showed that in the test population there was no increase in eye disease symptoms with surgery, nor was there any increase in eye disease symptoms if the patient also was on a course of treatment with prednisone at the time of the RAI. I have since heard that questions have been raised about the findings of that study, but I know of nothing that replaces it. But, if someone presents definitive symptoms of the eye disease, they typically are given prednisone, or something similar, if they take RAI. But the eye disease occurs in people who have never had RAI, in people who were treated surgically, and in people who are on the meds, and in people who have yet to see wonky thyroid levels. Why it occurs, what aggravates it is still a mystery.
Puffiness around the eyes is not however one of those distinct eye disease symptoms that necessarily triggers the prednisone treatment. Soft tissue swelling is associated with eye disease symptoms, but can also be caused by other things as well. The only way to know if that is what is going on with you is to check with your doctor. The tissue around the eyes is extremely sensitive to all manner of issues — allergies, pollutants, etc., not just the enlargement of the eye muscles.
in reply to: Want to have baby #1062977Should you fear being hypo after RAI/Surgery? No. You won’t "be" hypo — at least, not typically, or not for any length of time. Our doctors monitor us, and when we go into hypo territory, they prescribe replacement hormone, which, again, is chemically identical to our body’s own T4. Personally, I feel much better at the hypo end of normal, and I’ve even been technically hypo and not noticed any problems whatsoever. Other people drag if they are even close to the hypo end of normal. So, you just need to work with your doctor to find the spot within the normal range where you feel the best, if you are on any of the meds (whether the antithyroid meds or replacement hormone).
in reply to: TSH that won’t behave #1063015Talking with the endo is important. Possibly, a conversation with a pharmacist could help as well. What needs to happen is for you to put on your "detective" cap and try to figure out if there is something you are doing that might be interfering with the absorption of the replacement hormone into your blood.
Is there any other medication being taken that might be interfering?
Is the replacement hormone being taken first thing in the morning, on an empty stomach, and waiting at least a half hour before eating ANYTHING?
Typically, when something like this is going on, an analysis will show that another medication, vitamins, calcium supplements — things like that — are being taken too soon. Other issues could involve antacids, perhaps.
And, are you on a brand name of replacement hormone, or are you taking generic? Pharmacies can buy generics from different manufacturers at different times. That might be at play if you are taking a generic.
It is this type of detective work that might be necessary to figure out what is going on.
If, however, there is nothing like these possibilities happening, then perhaps you are just going more and more hypo, and need to take a larger dose of meds. Some of us DO continue to go more hypo over time as a result of the antibody action. I am on a much larger dose of replacement now than when I first started.
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