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in reply to: RAI and children #1069777
Staying on the carbimazole should not be a problem, as long as you are not showing abnormal levels of liver enzymes or reduced levels of white blood cells. If you are successfully managed on a very low dose, the choice should be yours as to whether you remain on this course or proceed with some other form of treatment.
Some doctors see RAI as a "rational endpoint" for every Graves’ patient, and so they may tend to see ATDs as just a way to normalize your levels before you get to RAI. That’s NOT their choice to make. Speak frankly with your doctor and ask if they have some specific reason to take you off ATDs right now and proceed with some other form of treatment. Listen to the response and take it into consideration as you make your own choice about how to proceed. If the doctor gives you a particularly hard time about doing what you want vs. what they want, and they don’t have solid reasons that outweigh all other treatment considerations, I’d search out another practitioner to help you with your treatment.
Just to answer your question about RAI and distance afterwards, doctors’ opinions differ widely on this point. My kids were about that same age when I was treated (maybe a year or two older), and I was advised to stay at least six feet away from them for the first 48-72 hours, then to "minimize" close contact until the remaining RAI in my body was reduced to minimal levels. (I chose to have them stay with relatives for the first few days, because I couldn’t imagine keeping that 6-foot ruler between us.) The way you can calculate the time period after those first few days is to know first how much RAI you would receive, then what your uptake percentage was. For instance, just to make this easy for the example, let’s say you get 10 millicuries of RAI, and your uptake percentage was 80%. That means 8 millicuries (80% of the total dose) will remain in the thyroid, and 2 millicuries will be excreted from your body through the fluid waste systems (primarily urine, but also a tiny bit in sweat & saliva) in the first 48-72 hours. Of the 8 millicuries that remain, the half-life is 8 days, so after 8 days, there will be 4 millicuries left in your body. After 8 more days, there will be 2 millicuries remaining. After 8 more days, 1 millicurie remains, and after 8 more days, half of that, and so on. So during that whole period of time, the amount in your body lessens and any potential risk to young ones decreases along with it. It’s all in your thyroid at that point, so the concern is with bringing the children close to your neck. My doctor told me to consider time vs. distance. If you will be very close to someone for some reason, keep it short. If you anticipate being with someone for an extended period of time, keep your distance for the most part. If your kids are sitting at your feet and coloring in a book, it shouldn’t be a big problem. If you want to give them a cuddle, just don’t cuddle them up at your neck for a long time. It is possible to manage, and you shouldn’t have to be completely sequestered from your kids, but of course we all want to be as cautious as possible with our kids’ futures, so you’d need to make the decision for yourself. The issue with radiation is not that one super-long cuddle will result in harm tomorrow, but that radiation accumulates in the body over our lifetime, and naturally we want to keep that accumulation as low as possible, especially for the little ones, who’ve just begun this journey.
And finally, if you decide that you do not want to pursue continuing on ATDs, but also do not want to deal with RAI, surgery is always an option. I know many successful surgery patients.
I hope that helps! Let us know how things are going for you!
in reply to: New Here – have questions #1069755The end result of both RAI and surgery is basically the same ~ they are just alternate ways to remove the thyroid, so the effect is that you end up with no natural thyroid left in your body, and you must replace its hormone with replacement hormone you take once a day, as well as managing the "feedback system" with TSH manually.
Fortunately, there are only a few things that necessitate changes in our thyroid hormone replacement dose, and typically once we find a good dose for us (one that leaves us not only within the normal range but at our optimum POINT within the normal range), we only need to test annually (or when symptoms arise) to maintain that level.
If there were any one treatment choice with results that were above and beyond the rest, we would only advocate that particular treatment choice. All three treatments available to Graves’ patients are comparable in terms of effectiveness, and so we leave that choice up to you. They all carry a certain level of risk, so your task is to look at each treatment carefully, then decide which risks you are willing to take on. For example, someone who makes a living with their voice may not want to take on the risk of surgical complications, even though they are rare. For that person, the one risk of losing or permanently changing the voice, no matter how small, would be unacceptable.
You may want to see both a surgeon and a radiologist to evaluate the two treatments for yourself. They know best the intricate details and the statistics on various complications and issues. Keep in mind that most doctors believe their discipline is THE BEST, so your surgeon will probably tell you that surgery is the best option, and your radiologist will probably tell you that RAI is the best option. It’s YOUR choice.
Now, as for your daughter’s new issues ~ that’s something you’ll need to take one step at a time, and I’m sure you’ll know a good deal more after her ultrasound. You don’t have enough information yet to say conclusively what’s going on with her, and that’s the first step. The ultrasound is typically pretty conclusive for what may be going on inside her thyroid, if indeed anything unusual is going on in her thyroid. Once you know what you’re dealing with, it’ll be easier to know what to do. You’re seeing the immediate benefit of knowing what you’re talking about, knowing your own disease and its potential for showing up in your children. The pediatric endo should be able to clarify your options after the test results are in, so please update us on both of you!
As your thyroid returns to its regular size, your voice should return ~ it just takes a little while. For the record, I would point out that if the meds are not a successful treatment for you and you need to investigate one of the other two available treatments, someone with a career in singing would usually prefer RAI over surgery. Surgical complications are rare, but if your vocal cords are your stock in trade, you wouldn’t want to risk them at all. Even a less than 1% risk would be too high, if you were that 1%.
in reply to: 22nd of July – date for op very nervous! #1070719I didn’t do surgery, so I can’t be the reassuring voice you really want, but I know that everyone I’ve spoken to who DID have the surgery has waxed poetic about the wonderful feeling of returning to themselves ~ you’ll get there too!
” title=”Very Happy” /> Try to breathe deep and often, leave all the anxiety to Him, and focus on doing whatever it is you need to do in order to get through the day.If your doctor has a lot of experience, and your doctor feels you are safe to have the surgery with whatever blood levels you’ve got, then ask about 100 more doctors just to make sure.
” title=”Wink” /> KIDDING! Are you laughing? Feel better? Then laugh more, promise me you will! 
in reply to: 9 months after diagnosis,my story #1069787Thanks so much Abigail ~
It’s not often that someone so early on in the process of dealing with Graves’ can put it all into perspective and really feel they’re on the upswing. Good for you! And thanks SO much for posting a positive story. I know you’ve helped a lot of people by passing that along.
” title=”Very Happy” />in reply to: Questions about PTU treatment #1069780You are extremely early in the process of ATD treatment, and your levels seem to be responding (the TSH reading typically lags by a few weeks ~ at this point your best indicator is your T4 level), so you have time to decide whether you feel that ATD treatment is working out for you.
This is the time when you need to be dialing in the right ATD dose to maintain normal levels, so you might find that you "bounce around" a little as you and your doctor figure that out, but you are so early in the process that you don’t have enough information to make a decision about abandoning ATDs yet. You haven’t been on ATDs long enough to see how you really feel while maintaining levels on them, but you do know your body is responding, so you are at least moving in the right direction.
Deviation in periods should be consistent with your levels, meaning that if your body is hyper, they’ll be lighter and further apart, and if your body is hypo, they’ll be heavier and closer together. Since the process of perfecting a dose on ATDs can result in levels that jump slightly from one direction to the other, you may find that the pattern varies every couple of months, but for the most part you should be getting ever nearer to the normal you knew before.
in reply to: RAI or NO…What is Your Opinion!!…HELP! #1070827I was suggesting you search our site ~ from the Index level, you can search the BB for any text strings or groups of words. Our search engine should be able to get you some relevant posts.
in reply to: Anxiety/Panic Thread….. #1069934Oh my goodness, that image is absolutely precious! Thanks for sharing!
in reply to: Savoring success!!! #1069864Once we’ve reached our best normal, stable thyroid hormone levels on replacement, we are no longer hypothyroid ~ just wanted to clarify that one point. The only way we continue hypothyroid is if we do not take enough replacement hormone, so if our levels are right FOR US (banging my oh-so-familar drum), there should be no associated issues with cholesterol as a result. My cholesterol readings are very low, and I’ve been on replacement hormone for about eight years, with no adjustments in diet, or adding meds to control cholesterol.
in reply to: Mood Issues #1069893Try to be forgiving of what you must do to get through a day without collapsing. I know it’s tough when things change, and we feel SO inadequate. Consider how you’d feel if one of your very best friends were going through chemotherapy, having issues with energy and unable to handle her regular day. Now, feel that same level of compassion toward YOURSELF, because it may not look like it to others, but your body is going through similar trauma, and you need just as much compassion, help and forgiveness for not being where you’d like to be physically. (And this message is as much for those around you as for you. They need to realize this is not someone who suddenly became lazy and doesn’t WANT to step up, this is a person who wants desperately to get back to the way things once were, but is absolutely unable to do that yet.)
You WILL return. I know that because I’ve seen it, in many many many participants here. Go back six months in posts and see if the names are the same. For the most part they are not ~ many have dropped off because they have returned to their own lives, they don’t need us any more, and they’re too busy to check in and let us know they finally feel FABULOUS. You’ll get there too, but you must go through this period first. I know it’s no fun, I was there too. I was diagnosed when my kids were 5 and 6, and I thought I’d go out of my mind, but I’ve come through it, we’re all healthy, our relationships are healthy, and I’m so grateful I had this place for validation, venting, and information.
in reply to: Just diagnosed with TED and have some questions #1070004I know there were some people here who had TED before Graves’ thyroid disease ~ I hope they chime in and let you know how it went for them. In some ways, it’s a blessing to know that the thyroid disease MIGHT occur. That way you’re aware of what may come, and you’re in the habit of checking for it, so the likelihood is that you won’t be hyperthyroid for a long period of time before you begin to take care of it. That’s where the worst of the damage comes in ~ the period after we’ve gone hyper and before we’re correctly diagnosed and begin treatment.
I’m glad you find your contact lenses comfortable to spend the day in ~ not all TED patients have issues with lashes in their eyes, but it’s a real bonus that you can use your contacts to keep that problem at bay. Many find their contact lenses far too uncomfortable to bear.
The two biggest concerns for TED patients are serious corneal damage and compression of the optic nerve. Optic nerve compression is extremely rare, but the dryness in your eyes caused by the proptosis and the lack of properly moisturizing tears can lead to real problems with scratched corneas & corneal ulcers, and if it gets bad enough it can’t be fixed, so I’m happy you have a comfortable way to avoid that problem.
in reply to: Memory Loss #1069978We hate to confuse our doctors! Just the one we’re looking to for guidance, and they shrug their shoulders and scratch their heads? AAAUGH! The elevated liver enzymes shouldn’t confuse your doctor ~ they are one of the more serious side effects the doctor should be monitoring for regularly as you take PTU. If that doctor doesn’t get his head in a book and start doing some of his OWN in-depth research into your condition and your medication, and then come back to you with a much greater knowledge-base in your next conversation, I would recommend shopping for a new one. This is nothing to play around with.
in reply to: Dose change after 15 years? Meno? #1069858Menopause frequently triggers a change in our need for thyroid hormone. If our thyroid was working, the feedback mechanism with the pituitary gland would take care of it, but since we’re taking synthetic replacement hormone, we need to manage the adjustment with our doctor. That’s why we always recommend being tested at least annually, to make up for small changes that occur due to changes in weight, activity level, age, "reproductive state" and other things we may not specifically know about right now. The reason we have a feedback system through the pituitary is that it isn’t a static requirement throughout our lifetime.
in reply to: Memory Loss #1069975 I love you guys.in reply to: Does anyone have protruding eyeballs? #1069873OH yes, plenty of people here have protruding eyeballs, or have had in the past. We refer to it most often as TED (thyroid eye disease), proptosis (the medical term for bulging), or bulging. There are literally thousands of posts talking about this ~ it is commonly associated with Graves’ thyroid disease, though it seems to be a separate autoimmune disease that is often connected to thyroid conditions, so the newest term for it is Thyroid Eye Disease rather than Graves’ Eye Disease, but you will definitely find posts referring to it under both names.
This is best treated by an ophthalmologist, not an optician, not an endocrinologist. If you don’t already have an ophthalmologist, get in to see one. For the most part, as long as your optic nerve is not in danger of being compressed (that happens with only the most severe cases), it’s "wait and see" for a while, but it’s good to develop a relationship with a doctor so you can determine where you stand. So it’s not necessarily urgent that you see an ophthalmologist, but they can help you manage the symptoms and let you know what to watch for that MAY need urgent treatment. Make sure you find one who has treated TED patients in the past. That makes a big difference.
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