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The type of replacement hormone you choose isn’t as important as taking it correctly and consistently, testing under similar circumstances (same time of day, same status ~ having eaten or not is irrelevant except that it should be similar circumstances each time, same with having taken your replacement pill for the day), and sticking with the initial brand you choose. They can all get your levels back to normal.
Many patients have had decompression surgery, once in the cold phase, without having an endangered optic nerve. It is a medical necessity when you need to get the eyes back into position in order to protect the cornea.
Muscle surgery is pretty common after decompression, as is lid surgery. Done correctly and in the right order (decompression first, muscles second if necessary, lids last if necessary), these surgeries have a very high success rate. It’s delicate, getting the eyes into the precise position that looks right and makes you see correctly. It’s worth going for all the surgeries you and your doctor decide are necessary in order to achieve that. It may be that you don’t need to make a decision about muscle surgery until after decompression, and the same goes for lid surgery. See how things "settle," then make a decision about what to do next.
I hope that helps!
Congratulations, a real milestone!! Try to enjoy.
” title=”Cool” /> After all, it’s still work… 
” title=”Wink” />in reply to: Allergic to methimazole and PTU? …RAI? #1067963That’s a question for your doctor, or your pharmacist ~ either could probably answer it definitively. I’ve never seen this question brought up here before, and I’ve been here a LONG time.
in reply to: feeling better #1067928I’m sure you’ll hear back from our "current patient" very soon, but I just wanted to let you know that, for the most part, we take RAI and, for the first couple of weeks, it seems like nothing happens. Some people get a slightly sore throat, but overall there’s really nothing to expect in those first couple of days. Over the counter painkillers should deal with the sore throat easily enough if you get it, and after that it’s really just a little time to yourself. That’s what it was for me anyway ~ I didn’t have the sore throat, didn’t get the "dumping" after two weeks, nothing. Eventually I went hypo, so I know it was real
” title=”Very Happy” /> but other than that I had nothing special to deal with for the first couple of days. Just loneliness. ” title=”Wink” />in reply to: Is it ok to be fearful of having RAI? #1068017Beta blockers cannot be used by asthmatics, so if you are one, that would explain why your doctor has not prescribed them. They are used ONLY to relieve some of our symptoms (the anxiety, tremors), and protect the heart from possible arrhythmia, they do nothing other than that. The potential for needing beta blockers actually decreases once we’ve had RAI ~ except for that two-week "dumping" potential ~ so you may want to discuss it with your doctor, but it may be a non-issue for you. If you want to be very cautious, get a prescription for just a few pills (10 would be plenty), and talk with your doctor about what conditions they would want to see before they would give the go-ahead for you to take them. You would need to call the doctor’s office to confirm that you’ve experienced those symptoms and get final approval to start taking the beta blockers, but at least you’d have a method that wouldn’t require driving several hours. Once we start taking beta blockers, we need to "wean" off them slowly, but if you were taking them for such a short period of time, that may not be an issue. Again, something to discuss with your doctor.
There are two types of exposure issues with RAI. As you mention, the first 48 hours is the time when you need to be the most restricted, and here’s why. Most of the RAI you ingest is taken up into your thyroid ~ it should match the percentage that came out of your uptake/scan results. In other words, if your uptake results were 80%, then your thyroid will take up 8 millicuries out of 10 millicuries. The remaining 2 millicuries would be eliminated from your body through the fluid waste channels ~ mostly urine, but also a little bit in your saliva and sweat. For that reason, you would need to protect those around you from coming into contact with those body fluids, because if they take some in, it could reduce the function of their thyroid. It would be a small impact, but impact nonetheless, so of course doctors (being cautious beings) keep us from causing any impact by restricting our actions. Flush the toilet twice, don’t share food, don’t prepare food for anyone else, use disposable plates/flatware, use gloves (get gardening gloves), wash your bedding twice before anyone else sleeps in it, wash all your clothing twice before you wear it again. Those are some of the more typical restrictions. The doctor typically also recommends drinking lots of fluid and urinating often. That helps to keep the eliminated RAI "moving on" and also prevents it from collecting in the bladder for very long. We have seen that restrictions vary from doctor to doctor. I would ask for a copy of your doctor’s typical restrictions BEFORE you show up for the dose. It can be tough to go out and buy disposable plates when you’re supposed to stay six feet away from people…. (And by the way, get disposable BOWLS! I almost forgot that when it was my turn.)
In addition to this, there is the radiation coming from your thyroid. This requires limitations based on time and distance. If you are planning to be with someone for a long period of time, keep your distance. If you need to be close to someone, if they need to be close to your neck, then make it brief. The smaller the person, the more you need to be careful ~ and you also need to be careful with your pets. It’s not as if being near someone is going to "burn" them or make anything happen immediately, or even soon. Radiation is a lifelong, cumulative thing. Any exposure now would just be added to any x-rays or other radiation exposure (including sunshine) that a person would have in an average lifespan. It may or may not have any impact at all, in the end, but again, caution is always preferred.
Once the first 48 hours has passed, you’ve eliminated all the excess RAI, and the only issue remaining is radiation in the tissue in your neck. The RAI we take has a half-life of eight days, so every eight days, the effective dose that’s in your body is reduced by half. The amount of time involved in reducing risk to zero (or near zero) changes depending on the dose you’re given. You can figure that out once you know what your dose is. In the meantime, it’s good to know the risk is reduced some each day.
I hope that helps!
in reply to: Allergic to methimazole and PTU? …RAI? #1067960Just a quick comment ~ the first response you got seemed to say that methimazole is in some way similar to thyroid hormone replacement, which it’s not.
Methimazole and PTU are chemical medications formulated to affect the way our body uses thyroid hormone, and a person can easily be allergic to either of them, to the medication itself.
Thyroid hormone replacement is, as this last post says, chemically identical to your own thyroid hormone, and so we are literally unable to be allergic to it.
In one final piece of confusion, it IS possible to be allergic to one of the inactive ingredients in a thyroid hormone replacement pill (the substances that give it color, or substance), though it’s extremely rare. If it happens to you, there are several manufacturers, and you can explore the different types to find one without your particular allergen. There is also a replacement brand called Unithroid that has NO artificial colors or substances, so that’s probably the best option for those who are allergic to fillers in other brands.
And finally, just to be complete in my information, once you have chosen a replacement thyroid hormone, and determined you are NOT allergic to it, you should stick with that particular one. Don’t let your insurance company, your pharmacy, or your doctor’s office change it. While technically these are supposed to be exactly the same, our bodies tend to react slightly differently to each one, so having gone through a long period of adjustment, finding YOUR dose that leaves you feeling just right, you could trigger an entirely new period of adjustment just by switching brands.
I hope that helps!
in reply to: Is it ok to be fearful of having RAI? #1068015They wouldn’t refuse giving you RAI for being sick. I think the only reason they’d refuse to give it is if you’d been taking ATDs steadily up until the day of RAI.
in reply to: Any suggestions- Graves’ child behavior #1068044Levels "in the normal range" are not THE perfect point, there is a big difference. Unfortunately, many doctors look for that "green light" of normal range, then they stop thinking. It’s quite possible that even though her levels fall within the normal range, they are not normal for her. This continuing behavior could easily be a sign of that.
Still, I’m not exactly sure how long it has been since your daughter began treatment ~ I see in your original post, you mention that they tried to take her off ATDs in April, so I would imagine she’s been on ATDs for quite some time (they usually don’t attempt remission for at least a year). In any event, we are not "well" until our levels are normal (for us) and stable (for months), so it’s possible that along with this recent fluctuation came another period of time within which she needs to "settle."
It’s obviously impossible for us to evaluate everything that’s going on with her, though we can tell you how it feels to be where she is. It is extremely frustrating, and the "rage" is a classic symptom that really does take longer to dissipate than the others. For me, "Ms. Zen," it was literally like a freight train taking me over. First I’d take things too personally, imagine that people were just trying to bug me, and the next thing I knew I’d be a yelling, spitting crazy person. I was able to keep it better in check at work, not sure how, but perhaps I vented to friends rather than yelling at the "offender," something like that. When I was home I would find it far more difficult to keep a lid on it, and believe me, it got the better of me quite a lot. If you can talk over these episodes with her AFTER she’s calmed down, perhaps you can come up with some way to "break the tension" when they begin. Something that may make your daughter laugh, or minimize the impact ~ Jake used to replace the words he was yelling with "I LOVE YOU! I AM NOT ANGRY WITH YOU! I DO NOT KNOW WHY I AM YELLING!" That takes a bit more of an adult mentality, in the moment, I think ~ but maybe talking it over with your daughter can help you come up with something that will entertain you both and bring the tantrum to a close. I really wish you luck.
in reply to: rai and BB #1068126My RAI was 11 years ago, and I’ve had nothing else come up in my medical history since. As an overall piece of info, RAI has been used (and patients monitored) for well over 60 years now, without evidence of other disease caused by RAI. Remember too, thyroid cancer patients routinely receive up to 20 times the dose we get, and it is still considered to be therapeutic, in other words, helpful without increasing other risks.
in reply to: Any suggestions- Graves’ child behavior #1068039Well, it’s good news that she’s not acting out in school! Still, if homework is becoming an issue at home, you may be able to get some accommodation with that for a little while. It’s certainly true that people tend to "lash out" at the people they trust most ~ she knows you will love her no matter what! ~ and that makes it harder for you to determine how much is the disease, how much is just overall frustration, and how much is "willful misbehaving." Maybe it doesn’t really matter what it is, maybe you just need to do some damage control and make sure everybody in the house is not going nuts over the upheaval. In any event, I think counseling for you and your husband, at first, is a great idea. You can get some ideas on how to approach the entire family about this ~ we’ve had a little experience with it, though not because my child had Graves’, just because we needed to make sure we were handling things without making the situation any worse. As my Mom used to say, it takes two to tango ~ you may not even recognize things you’re doing that contribute to the overall "scene." In hindsight, I can see my contribution, but I had no perspective to see it while in the moment, which is another way a counselor can be a big help. Sometimes we need to give ourselves a time out, remove everyone from each other and just be still for a little while. If you are not willing to use medication for the behavioral issues, you have a right to refuse it as her parent, so don’t eliminate the idea of counseling just for that reason. And keep in mind that you do need to find a good "fit" with someone, this isn’t like finding a good cardiologist, it’s far more personal, so the process may take a little time, but the overall benefit, once you’ve found someone you like who can help, could be enormous.
in reply to: My choice of treatment and a question about it #1068056Hi Deb,
Just a quick comment ~ if I had a quarter for every GD patient I’ve heard say they’ve "always been the go-to person, for everyone" I’d be a wealthy woman!
” title=”Very Happy” /> That counts for me too. It’s tough to let go of that, we tend to think we are "super people," nothing should get us down, we just shake it off and DO IT ANYWAY. Sometimes I think that’s the very lesson we’re being taught ~ that others can also be "gone to." They may not do it as well as we would, or as well as we THINK they SHOULD, but they can do it, and we need to let them (sometimes). We need to make ourselves a priority, at least in this one instance, and realize that our health is more important than doing everything, for everyone.in reply to: Any suggestions- Graves’ child behavior #1068035You may be able to get accommodations under the ADA or whatever IEP program your child’s school may have, at least while she’s in the process of achieving some sense of normalcy with her thyroid hormone levels. As with all of us who have Graves’, we didn’t get sick in a week, and we won’t get well in a week. Even if her levels are successfully managed (which it doesn’t sound like they are, yet), she’s going to need some TLC (yes, I just mean tender loving care) in order to come through this and heal completely. It’s possible to meet with her teachers and the school administrators, lay out her difficulties, and achieve some level of accommodation in order to keep everyone’s sanity. I realize you probably hate to grovel to her teachers and you may feel as if you’re making excuses for her, but keep in mind that her behavior at this point is CHEMICALLY DRIVEN. She is not a difficult child who doesn’t know how to behave, she is chemically imbalanced and needs to achieve some balance, THEN heal, before she will return to the child you remember before she was ill. In the meantime, there is no shame in asking for help to get through this. The teachers may allow shorter assignments, or extend due dates, or any of a thousand accommodations. Try talking through this with them and find a balance for all of you.
in reply to: Just an update from Lauren #1068048Ranges of normal vary from lab to lab, so what’s most important is to get our tests done at the same lab each time, and compare our levels to THAT lab’s normal (comparing to anyone else’s won’t be accurate).
Having an autoimmune disease is not the same thing as a compromised immune system. We aren’t necessarily weaker or unable to fight off things like swine flu, just by virtue of the fact that we have an autoimmune disease. Antibodies that our body creates against our thyroid are specific to the thyroid only, and do not affect other parts of our body. Graves’ can sometimes come with other conditions (TED and pretibial myxedema), which also come with their own specific antibodies, so again, those cannot affect your ability to fight off a cold.
The most obvious effect would be that when we DO get sick, our autoimmune symptoms can spike because our immune system is stimulated by fighting off the other disease, and then ALL our antibodies get activated. If you no longer have a thyroid, then those "spikes" would not be able to affect your thyroid hormone levels, since the GD antibodies specifically force the thyroid to make too much thyroid hormone ~ no thyroid, no difference. You may see escalations in TED symptoms (if you have it) or in pretibial myxedema symptoms (if you have that), since they are separate, but related autoimmune diseases.
We may get weak due to extended periods of hyperthyroidism, but that would be most damaging to our health when we are still hyperthyroid. After successful treatment, our risks and weakness decrease.
in reply to: THYROID GONE – do I still have Graves? #1068120Autoimmune disease does not mean the same thing as a compromised immune system. Autoimmune disease means that our immune system is OVERworking, and has created antibodies to our own tissue. These antibodies are very specific, with a "lock and key" relationship to the thing they target. That means once our thyroid no longer exists, the antibodies that targeted our thyroid can no longer affect us. They couldn’t attack other tissue in the body, our body would have to create a DIFFERENT antibody in order to attack another part of the body.
However, at last year’s conference, we were told that it is beginning to be recognized that Graves’ may be more a *syndrome* than a single disease. EVEN SO, it comes with site-specific antibodies (some to the eyes, which create TED, and others to the tissues in the shins, which create pretibial myxedema), so we can’t say that all maladies following our experience with Graves’ can somehow be connected to Graves’ as a disease. I think the closest we can come to that type of statement is to say that the time we spent hyperthyroid may have weakened other body systems, and afterward those weakened organs show it. Other than that, slightly imbalanced thyroid hormone levels MAY play a part in "keeping us weak," if we haven’t properly dialed in OUR normal (vs. finding someplace in the normal range and calling it "okay").
And one last thought ~ having one autoimmune disease gives us a slightly higher risk of acquiring another autoimmune disease, so these other conditions MAY be related to that. The facts about autoimmune diseases are just now coming to light, we’re very early in the research process, and it’s possible that other autoimmune diseases may be found that could be contributing to these conditions you’re experiencing.
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