[Ski]

in reply to: Eye Problem Post RAI? #1073226

Hi Amy,

If the RAI doesn’t work, surgery would be the solution. I suppose we’re lucky to have that many choices, but I am with you, he needs relief and he needs it NOW. I am hoping for the quicker path for you, that RAI succeeds for him, and that he begins feeling a little better each and every day.

I’m glad you’ve had the discussion about suicide, because it’s important for you to know that he felt that despondent, and it’s also important for him to have said that he knows that’s not the answer. Young people shouldn’t have to go through this kind of hardship, and yet some of them do. "Life’s not fair, is it?" (from the Lion King movie). ” title=”Very Happy” /> Much as we wish we could craft our children’s lives and make them lovely, perfect experiences, we can’t.

Those of us who have come out the other side can say we feel stronger, more capable, and also that we’ve made some really great friends through this site. We have to remember that these things shape us, and while it might not feel all that good being "shaped" in this way, that’s our path. Your son sounds like a fabulous person, and this is allowing his inner beauty to shine through so you can see it VERY clearly. Sometimes we have to actively seek things to be grateful for, and hang onto them. You will both get there. It’ll be okay. HUGS!

[Ski]

in reply to: Eye Problem Post RAI? #1073223

I’m SO sorry you feel this way, and I completely understand it! Three years is a very long time for your son to be battling with this. I know it sounds like platitudes, but you’ve been doing everything you possibly can to deal with this, and the upside is that it will not endanger his life, and that’s something I really think you need to stop and be grateful for. You could be dealing with far worse diseases in a young person, so try and see the bright side, that you’re dealing with something for which there are successful treatments available. You tried to be as minimally invasive as you could, that didn’t work out, and now you’ve moved on, so at least the thyroid level issue should be resolving, and he should be getting closer to feeling well in that regard all the time. The eye symptoms, with luck, will be transient. In the young, the changes are typically much less, and resolve quicker and stay resolved better. An ophthalmologist will be helpful, I’m sorry you’re having trouble connecting with one, and I know it’s frustrating to think you’ve begun yet another difficult path for your son.

Do what you can to put a smile on his face, whenever possible. He’ll appreciate it, and it’ll make you feel better too. Give give give, go ahead. You love him and he deserves it.

[Ski]

in reply to: Anyone experiencing intermittent hoarseness? #1073206

If your levels are off (in either direction) it can result in a swollen thyroid, but it typically wouldn’t just be affecting you in the morning. Best to have it checked out.

[Ski]

in reply to: Should I be here? #1073250

Regulating your hormone levels after you’ve gone hypothyroid is definitely within our expertise, so we can help with that, if you have questions.

In addition, there is Thyroid Eye Disease and Pretibial Myxedema that are elements of the Graves’ "syndrome," and those can come up any time in our lives ~ they don’t necessarily coincide with the thyroid symptoms. TED usually comes on within a year of thyroid symptoms, but sometimes not. Most GD patients do not get the worst TED symptoms, so don’t worry, it’s not inevitable. Same with PM ~ this is an "orange-rind" looking rash we get on our shins, itches like crazy and is most successfully treated with steroid creams. Again, not inevitable. Just possible.

There are ongoing studies about what other parts of the body GD may affect ~ many of us continue to experience a kind of "brain fog" ~ though it lets up a LOT following treatment, we still feel some fogginess.

And we can’t discount the effect of just knowing that we have a chronic disease ~ that can be emotional, and may require that we get some type of counseling or use some kind of therapy to alleviate the sadness/depression.

For all these reasons, YES, you should be here. ” title=”Very Happy” /> Glad you found us.

[Ski]

in reply to: Teeth problems #1073209

I don’t recall exactly where you are in your treatment, but if your levels have been controlled, then you shouldn’t be experiencing bone loss any more. If you were hyperthyroid for a long period of time before you were correctly diagnosed, that could have affected your bone mass and it may be showing up now, but the bone mass doesn’t continue to be sapped once we’re successfully treated.

I would say this is a good one for your dentist to evaluate, and even maybe for a return visit to your orthodontist (or a new one, if you’re no longer in touch with the original).

[Ski]

in reply to: Autoimmune Disorders #1073355

Your kids will inherit the chance of getting SOME autoimmune disorder, and no one knows which their body will pick, if any. Not everyone gets one. Also, Graves’ typically comes on later in life, so the likelihood is that they would not have it when they’re very young. (Though some do.) The best thing to do is watch for the classic symptoms, and when your kids get older, make sure they are aware of the symptoms so they can watch for themselves and hopefully avoid any delay in diagnosis.

[Ski]

in reply to: Hair loss – I’m scared #1073241

Of COURSE it’s worth being here, you will recover from this ~ right now it seems like that stretches a long way in the distance, but you’re getting closer every day.

The hair loss is caused by the hyperthyroidism and also by rapidly fluctuating levels ~ the body interprets these things as life-threatening conditions, so it removes resources from the hair and nails in order to keep the rest of you alive. It will get better as your levels stabilize, but meanwhile, even though your levels are moving in the right direction, it is a change the body doesn’t "understand." For right now, you probably need to get yourself a nice short haircut that doesn’t require a bunch of fuss. That will minimize the hair loss and also the sight of all that hair.

The sores do not sound like a typical response to PTU, but you should definitely have them checked out. Stress and strain can cause a lot of physical symptoms as well, but the point is to get you some relief.

Please know that we understand. We have been there, and it is difficult. But we are all evidence of the success you can have.

[Ski]

in reply to: Autoimmune Disorders #1073351

My feeling is that a rheumatologist would not be the right doctor to see for GD (to answer your question ~ sorry I missed that the first time).

[Ski]

in reply to: Treatments for Eyes #1073498

I’ve known people who’ve had those puffy tissues around the eyes from being hypo, so make sure your levels are good. That may help too.

[Ski]

in reply to: Anyone that tried natural methods/diet? #1073660

Hi KMB,

Glad I’m able to be of some help to you! After two days, you should be able to get back to work, unless you work taking care of small children or pets, in which case you may want to be more prudent, but I’d check with the doctor to be sure. I felt pretty normal throughout, the RAI didn’t make me feel significantly different itself, in other words, no stomach upset, no headaches, depression, emotional symptoms, in the first couple of days. It was truly like a couple of days off, except I couldn’t go out to the store. If your doctor suggests using disposable dishes, remember bowls! ” title=”Very Happy” /> That was one I forgot.

Exercise is very individual. You probably want to wait at least those first six weeks, just to be sure the excess thyroid hormone is out of your system. Then start evaluating your strength and stamina with a professional, a physical therapist would be perfect.

There can be one short period of time, a couple of weeks after the RAI, when you may feel extra hyper. This is attributed to elevated levels of hormone due to the dying thyroid cells releasing the hormone they’ve been storing. It’s usually transient, perhaps a few days’ time, and you can typically discuss with your doctor taking some more beta blocker to counteract the symptoms. It did NOT happen to me at all, so presuming you’ll need the extra beta blockers may be a mistake. Discuss this with your doctor so you can take care of it in the moment if it happens to you. The doctor may be willing to give you some extra beta blockers and instructions on what you must be experiencing in order to consider taking more.

Six weeks is the earliest possible time that you can find yourself hypo, but it doesn’t happen for everyone that quickly. Once you DO go hypo, you’ll need to begin thyroid hormone replacement and that will begin an adjustment period as well. Some people are lucky enough to go with one dose that serves them perfectly, but that’s pretty rare. Just try to focus on the fact that you’re closer every minute, and don’t expect "full normal" right away.

[Ski]

in reply to: need some questions answered…new to this!!! #1073923

After 48 hours, the highest level restrictions should let up. That’s when your body is expelling the RAI that was not taken up into your thyroid. After that, it has to do with distance and time, because then you’re dealing with the small amount of radiation in your thyroid. If they’re going to be cuddled up near your neck, don’t make it a prolonged period of time. If you’re going to be with someone for quite a while, hours maybe, keep your distance a bit (6 feet maybe?, less as the weeks go on). The radiation is cut in half each 8 days, FYI. Does that help?

[Ski]

in reply to: Tips on dealing with fatigue? #1073340

I was on methimazole for a short time, and I did have kind of an extra lethargy, beyond what my levels would suggest, but I have never seen it on a list of possible side effects. It may have more to do with the way our body reacts to the changes it causes. You say that you had a normal thyroid hormone level just months before you were diagnosed with Graves’ ~ have you attained THAT specific level on methimazole, or are you just falling within the (enormous) normal range? If you are not at that specific point, see if your doctor will adjust your meds a little to get you exactly there, wait six weeks or so, and see how you feel then. It can take up to six weeks for your body to fully "register" the new dose, that’s why I would suggest waiting to get labs done or make a final decision on how it makes you feel.

[Ski]

in reply to: Tips for eye strain ??? #1073268

That’s a good question ~ I know there are some freestanding magnifying glasses that draftsmen used to use, they clamp to the table, they’re a BIG circular magnifying glass with light around it (kind of like a makeup light), and they were on an arm with an elbow that could be suspended over what they were doing. If you could find something like that, at least you wouldn’t have to hold it with your hands. I think there are also some "whole page" magnifiers I’ve seen, though I can’t recall where.

Other than that, all I can think of is LOTS and LOTS and LOTS and LOTS of eye drops, every 10 or 15 minutes, if you’re doing something that strenuous to your eyes, and as Dianne mentioned recently, remember to BLINK frequently. Also, make sure you are operating in a space with sufficient light, without it being IN your eyes.

If you don’t already use nighttime gel (usually only used by people whose eyes have trouble closing at night), you may want to take advantage of that period of time to give your eyes a boost of healing moisture with the gel. It might help. Just don’t expect to see anything immediately after you put the gel in, so put it in right before you go to sleep.

Let us know how it’s going!

[Ski]

in reply to: Graves disease in Males #1073279

Hi Aravindh,

We’re glad you found us. It’s true, Graves’ is rare in men, but it certainly does happen (several men post here regularly, including one of our founding members, Jake). How? Well, that’s really the 10 million dollar question. All that’s really known is that is is much more common in women, but men do get it. I think the last I heard was 8 to 1.

You will return to health. Our thyroid hormone levels are something we don’t consider, until they go haywire. Thyroid hormone, you probably know, is the "fuel" for every cell in our body. When Graves’ comes and forces our thyroid to release more thyroid hormone than we need, every cell in the body is potentially affected while the levels are high. The medicine you’re on (Tapazole) performs a chemical function that brings things back into check and allows your thyroid to release ONLY what you need. At the point that your levels return to normal, the rest of your body can begin to heal. So the real goal is to get your thyroid hormone levels into the normal range, and ultimately at your normal point, which is a little tricky to find, but very worth it. The range of normal is very large, because people feel normal at many different points along that range, so finding YOUR point is important to feel really truly good. That process can be a little bit slow, so be patient for now, but know that you’ll be okay eventually. Take it a little bit easy, give yourself some breaks, and don’t feel guilty about it. You’ll be back at full force eventually, but for now it’s a good idea to protect yourself somewhat.

This should have no effect on your future fertility, no matter what treatment you use. (There are three ~ if ATDs are working with you, it’s easy to stick with that for now and do some research on the others just in case someday you need to or want to choose another.)

Palpitations should go away as your levels return to normal. The doctor will give you instructions on how to wean off the Inderal, because that just protects the heart, masks the tremors and reduces the anxiety while you’re still hyper. Your doctor will determine whether you will continue to need it after your levels are back to normal, but it is suggested that you should wean off it to avoid a rubber band effect with the symptoms you’ve been controlling. It takes a week or two to wean off, depending on the dose you are taking. Again, make sure adjusting your medications is done based upon your doctor’s recommendations.

Sometimes Graves’ goes into spontaneous remission (I think I had several episodes where it was beginning, but abated before anyone diagnosed it), but there is no "natural cure" that has been proven to reduce thyroid hormone levels effectively in any kind of reliable way. If there were, everyone I know would have chosen it. It is important to perhaps become more attuned to your body, because any autoimmune disease can be exacerbated by stresses of every kind. Learning to either remove the reactions or remove the triggers can be an important part of feeling well overall, but it won’t have a direct effect on your thyroid hormone levels.

I find that one commonality among all GD patients I know is that they are "Type A" "do everything" people. Not sure what the connection is, but it’s something we have to learn to let go of, a little, when we are recovering. We know it’s a struggle to say "no" to MANY things, and it’s frustrating for a while, but know that you will come out the other side. Do the things that satisfy you, that fulfill you, that bring you peace, joy, or a sense of accomplishment. Say no to things that are draining.

And keep asking questions! We’ll be here for you.

[Ski]

in reply to: Autoimmune Disorders #1073348

Many people have more than one autoimmune disorder ~ there is a higher likelihood for us to end up with two, once we have one. It must relate back to the genetic defect doctors recently discovered we all share with other people who have autoimmune disorders. Not everyone with the defect has an autoimmune disorder (yet?), but everyone with an autoimmune disorder has this specific genetic defect. By the way, that defect is what can be hereditary ~ not a predisposition for Graves’, specifically, but a risk of getting some autoimmune disease.

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