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You’re right, it’s not very common, but we do have several parents of young patients posting here. You may want to take a look for those posts and send private messages (or they may find you through this post).
” title=”Very Happy” />There are a few differences when kids get GD, but for the most part the story is the same. Sounds like her doctor is doing well by you all.
If your daughter ends up with symptoms of the eye disease, you should know that children typically get it in a less severe way, and it usually affects just the fatty tissue behind the eyes (instead of the muscles), so it usually resolves more completely at the end, even if they do get severe symptoms.
Adolescent hormones can play with the thyroid hormone levels, so you may need to be really vigilant about getting blood tests. Make sure you share information with your daughter, because she’s going to be feeling particularly anxious about everything. Knowing what’s going on will probably help her quite a bit. Let her know she’s welcome to post here if she likes.
Other than that, it’s pretty much the same ride as adults get. Stick around, ask any questions you like, we’re here to help!
I’m glad they’ve given you some help! I really hope you’re seeing some light at the end of the tunnel soon.
Funny you should mention being able to "talk back," I think that’s something I’ve also finally been brave enough to do since GD. Oh, the lessons we never thought we needed to learn….
Unfortunately, remission is by definition temporary, so it would appear that you’ve come out of remission. ATDs would likely work to keep your levels stable while you are going through your other treatments, even if they don’t create a second remission. That’s probably the least impact solution for your body, since it’s going through so much!
Please feel free to post & let us know how things are going ~ we’re here not only for information, but also for support. We may not have been through exactly what you are going through, but we can certainly provide an emotional "soft place to fall."
” title=”Smile” />Hi Lisa,
This was posted twice, so I just deleted the duplicate, FYI.
” title=”Very Happy” />There was a recent thread on PTU vs. Tapazole, you may want to check that out. I think the preference, if not due to a pregnancy (PTU being preferred through pregnancy), may be doctor by doctor. You should ask the doctor about that. Both meds work.
Once you start taking ATDs, it can take up to six weeks for your body to flush out the excess thyroid hormone you had in your bloodstream, THEN you can begin to evaluate what’s going on with your thyroid hormone levels. Keep a list handy of hypo symptoms, and ask the doctor if you can get a standing order at a lab so you can have blood drawn any time you believe you’ve slipped into hypothyroid. Look for four or five traditionally hypo symptoms you are feeling with some regularity, before being tested. You definitely want to be proactive about levels, and don’t let any imbalance last, if you can help it.
Now, when will exercise be okay? That is really difficult to say. It depends on how quickly your levels are under control. Remember that the day your levels are normal is NOT the day you are "well." It’s the day your body can begin to heal from the assault of hyperthyroidism. It will definitely take some time for the healing to occur, AFTER the levels are normal, and stable, for a period of time. Everyone’s different, so it’s something you have to continually evaluate. Once your levels are normal you should check with the doctor to see what they say, and perhaps get a referral to a physical therapist to evaluate your strength and stamina. You may need to build back VERY slowly. Best to have a professional evaluation to keep from hurting yourself in the process.
Just a quick comment for you ~ you can still have more kids after RAI, it doesn’t affect fertility. MANY people here have conceived and are now raising beautiful, healthy children they had post-RAI. Some have had several.
” title=”Very Happy” />Hi Amy,
I’m SO glad you like the doctor! That can make all the difference.
The eye drops, as long as they’re preservative-free, CAN be used often, but it’s not absolutely necessary unless he needs them that often. For people with severe dryness, or people who are in a very irritating environment (lots of flourescent lights, or working on the computer for many hours at a time), you can use them every 10-15 minutes. Again, not necessary most of the time. You’ll find that drops today can help the eyes feel better tomorrow, so if the doctor suggested several times a day, start with that and try to stay with that, unless his eyes still feel dry. Then you can try using them more and see, after a couple of days, if that’s helping. The artificial tears can be a little expensive, FYI.
I’m so glad you were able to break through and see some compassion from your son. I know it’s been tough on both of you. Handling this as a team is much better.
” title=”Very Happy” />Great emoticon, I hadn’t seen that one before!
” title=”Very Happy” />But I digress.
” title=”Wink” /> We understand about the eye disease ~ it’s separate, but related to, the thyroid disease. The thyroid disease (or syndrome, as they’ve begun to realize) is Graves’ Disease. The eye disease is more routinely referred to here as Thyroid Eye Disease, or TED.
People with TED often experience double vision and pain behind the eyes. The diagnosis is confirmed through scans and measurements, which the ophthalmologist is doing for you.
Now, first I will tell you the good news. For the most part, TED patients do not experience the very worst of the symptoms. After the disease has run its course, if you continue to have issues with the way you look or the way your eyes feel, there are surgical options to return your eyes to their "before" look.
The not-so-good news is that, for the most part, the treatment for TED is "wait and see." Here’s why. At first, TED symptoms fluctuate ~ pressure climbs and drops, proptosis (bulging) increases and decreases. During this time, there are a couple of treatments you can take advantage of, if the symptoms are REALLY bad, but the most effective treatments involve steroids and/or directed radiation to the orbit of the eye, which (obviously) carry some risks of their own. For that reason, they are reserved for patients whose symptoms are the very worst, or whose eye pressure is threatening to compress the optic nerve, because that cannot be corrected and loss of vision results.
For most patients, treatment consists of making sure you have enough moisture in your eyes (use artificial tears liberally, NOT get-the-red-out drops, and sometimes gel products), and protecting them from irritants, such as computer work, flourescent lights, breezes, direct sunlight. Protection can be as simple as wearing tinted glasses, wraparound sunglasses, remembering to blink and using the artificial tears (preservative-free is a must).
Overall, it has been found that the active phase, or the "hot phase" of the eye disease resolves, changes stop happening, within 12-36 months. People who smoke are the ones on the furthest edge of those numbers. If you don’t smoke, it’s probably more on the order of 12-18 months until your hot phase is over. After the hot phase, there is a period of stability, and finally a period of slight improvements, followed by a complete cessation of changes. After the changes have stopped, meaning that your eye symptoms no longer CHANGE routinely, you have officially entered the "cold phase," and that’s when you can talk to your doctor about surgical corrections, if you need them. Surgery is considered during the hot phase ONLY when the optic nerve is threatened, because surgery done too early can overcorrect, and the trauma can actually trigger a new series of worsening symptoms, which will make correction later on more difficult.
For now, if you have pain, use ziploc bags of frozen peas or corn ~ and DON’T put them back in the cycle to eat.
” title=”Smile” /> You can thaw/refreeze a lot of times for purposes of using them as a cold compress, but they wouldn’t be any good as food anymore. The peas or corn fit more easily into the creases and contours of the eye, so you get more relief.You may also want to raise the head of your bed. It doesn’t improve the symptoms, per se, but it does use gravity to keep some of the fluid from "collecting" in the tissues around your eyes as you sleep.
For the double vision, there are prisms you can have put into your glasses (they have stick-on versions) that can help you to see normally. If the double vision is changing rapidly, you can be chasing a moving target with them, but you can investigate that and see how it works for you.
TED is an autoimmune disease, as is Graves’ thyroid disease. For that reason, avoiding stress CAN be a help during the active phases of disease. Your immune system, for some reason we don’t really understand, has begun to create antibodies to the tissues behind your eyes. They attack the tissues (either the muscle tissue or the fatty tissue, sometimes both), the tissues swell, and voila, your eyes experience pressure, trouble moving, double vision, and sometimes trouble closing all the way. This is because your eyes are enclosed in a cone-shaped bone cavity, and there’s nothing for the eyes to DO except bulge out when the tissues behind swell beyond normal sizes. (By the way, it is rather typical for the eyes to be affected differently, meaning one may have more pain/trouble moving than the other.)
Antibodies are stimulated into action when we are under stress. There is an adrenaline rush, as well as a "boost" to the immune system, which is meant to protect us. Unfortunately, when we have an autoimmune disease, the "boost" will boost the symptoms we are trying to avoid. For that reason, anything you can do to calm yourself, regularly, will benefit you, no question. I know it’s going to be tough as you go through this, and just because we say it doesn’t mean you’ll be able to do it. But do try. It’s worth it. Hot baths, funny movies, walks in the park, yoga, meditation ~ ANYTHING that brings you peace is a GOOD THING.
You will want to research everything you can about Graves’ and TED. An informed patient is much better at handling the bumps in the road, because they understand.
Keep asking questions! We’re here to help!
