[Ski]

in reply to: HAIR – Thank you!!! #1074218

First, we refer to it as TED, Thyroid Eye Disease, because it’s happened in patients with other thyroid diseases ~ so if you want to do a search for posts on this subject, you should use TED. We have LOTS of information here.

The swelling caused by TED is in the tissues behind the eyes, so the swelling is usually not reduced with a warm or cold compress. If you find comfort in using cold compresses, that’s fine, but it won’t bring down the bulging. It’s true that the treatment is usually "wait and see" for a period of time, especially if your symptoms are mild. If you find the symptoms increasing rapidly, you should definitely call your ophthalmologist to let them know. There are some treatments you can take advantage of if there is severe bulging or if the optic nerve is threatened, but otherwise they carry risks of their own (various forms of steroids can be used, and radiation to the eye orbits), so they are reserved for the most severe symptoms.

If you do feel as if a cold compress helps, then you might want to just use a bag of frozen peas or corn ~ they conform to the odd contours around the eye much more effectively than any typical compresses. Just don’t use them for food after they’ve been thawed/frozen a number of times. We recommend having you put them in a ziploc bag so you’ll easily recognize the ones NOT to eat.

[Ski]

in reply to: insecurity? #1073578

You could also discuss going back on methimazole ~ it’s a legitimate continuing treatment, if you’re interested. Your doctor probably will suggest RAI ~ if you’re interested in pursuing that but are concerned about the eye symptoms, there was one study that showed that a concurrent course of steroids (a few weeks’ worth) reduced the risk of worsening eye symptoms to zero, but steroids carry their own risk, even in a short course, so that’d be something to discuss with your doctor ahead of time as well.

[Ski]

in reply to: Methimazole after RAI?? #1073526

Typically not ~ it shouldn’t be necessary after RAI. If he was on beta blockers, those would likely continue for a little while. As a matter of fact, there is a phenomenon referred to as "dumping" about a week after RAI, when the destroyed thyroid cells release the thyroid hormone they’ve been storing. Sometimes people feel a little extra hyper for a few days, and sometimes the doctor allows for more beta blockers to be taken during that time. It’s typically driven by symptoms (when you feel it, take it) within limits.

[Ski]

in reply to: Still feeling so ill – think I am going off my head #1073535

I know this is tough ~ it sounds as if you have people around you who are concerned, and they need to be allowed in to help you through this. When you gather enough hands, it’s just a little extra for each of them but FAR less for you, which is exactly what you need. Please remember that you will return to yourself ~ it may take some time, but you WILL feel better. It is FAR better to be here than not. I know it feels hopeless, it feels as if you can’t take it. I’m sorry there isn’t much else that western science can do. In the meantime, perhaps you need to turn to other methods of relaxation, of healing ~ some people do yoga (low impact, at this point), some meditate, some take nice long hot baths. You need to preserve your energy, and since your body is having a hard time slowing down right now, you have to put some extra energy into that.

You should know that nearly everyone I meet with Graves’ Disease tells me that they’ve ALWAYS been the one to do everything for everyone, they don’t know what others will do without them, it’s torture to tell anyone "no." Perhaps that’s the lesson we’re meant to learn from this particular disease, it’s such a commonality between us it’s nearly alarming. We need to balance things for our own health right now. We can return to that "do-almost-everything" person, but in the meantime we need to accept help. Accept that people do not do everything exactly the same. If your helper puts the dishes back in the wrong cabinet, breathe deep and be grateful that they were there. Forgive yourself for not being capable right now, and for having to step back in order to keep your balance. If you had been diagnosed with something that people truly understood, you’d have no problem getting help. If this were a diagnosis of cancer, you would have a far easier time asking for help, don’t you think? Well, your body is going through a lot of chemical issues right now, just as debilitating. We often hear "you don’t look sick," as some kind of accusation. Well, not everything shows on our face and in our body, and sometimes people just need to trust that we are in a fragile state.

Please please please let us know how things are progressing. Has your doctor put you on any beta blockers during this time? Sometimes while we are hyper, the beta blockers can take the edge off ~ just keep the heart rate down, keep the shakes at bay, help us to relax. I know some patients cannot take beta blockers due to asthma and related conditions, so if it’s not a possibility for you, I’m sorry. It’s about the only medication I know of that helps during this extremely difficult time in your treatment (besides, of course, the ATDs ~ you’re still taking them, aren’t you?). Try to remember that each day may bring a TINY improvement, and try to look for it. At least that helps us to be looking toward recovery, even if we have to get there VERY slowly.

[Ski]

in reply to: HAIR – Thank you!!! #1074216

The hair loss is usually just from the fluctuating thyroid hormone as our levels come back into the normal range and finally find OUR normal point, so it’s not something the doctor can fix, or anything the medication itself has done, except that the medication is creating the change. Your levels are moving in a healthy direction, but they’re still moving, and the body interprets that as an emergency state because it shouldn’t happen naturally.

[Ski]

in reply to: Post-RAI Gastroparesis, Anyone? #1073543

I don’t know anything about Gastroparesis, but I’ll start looking into it. It hasn’t come up here, that I know of, but we may both be surprised to see responses.

[Ski]

in reply to: PTU making your stomach ache? #1073560

We’ve had several posts lately about abdominal aches, stomach pain, nausea ~ it’s not something that has been officially identified as a result of PTU, but I experienced something similar after RAI. It happened in the first week after RAI, and it resolved after about a week, and no one could tell me why it happened. I had to go on a liquid diet for a couple of days just to feel okay. It made me suspect that it had something to do with the rapidly lowering thyroid hormone because it happened when my levels would have been dropping most dramatically, and that would make it similar to your circumstances, even though I wasn’t taking PTU. As always, ask your doctor to be sure, but you should know at least that stomach pain isn’t usually a symptom of the more serious side effects of PTU, or a typical side effect of it at all, that I am aware of.

[Ski]

in reply to: TT or RAI!?! #1073572

Well, all those judgments are really yours to make. ATDs can be a long term treatment, and if your thyroid burns out anyway after using them, then you go on replacement hormone at that time (instead of now). Some people do have trouble getting well regulated on ATDs (it can be a bit of a chore), but if you’re interested in making it work, you probably can. You need to be willing to pay careful attention to things. For that reason, some people choose RAI or surgery to just "be done with it." It is YOUR choice. Your doctor’s recommendation is something to consider, but it’s not necessarily the right answer FOR YOU.

If you end up wanting to decide between the two ablative therapies (surgery or RAI), again, they each carry pros and cons. Take your time with this decision ~ if the methimazole regulates your levels fairly well, you can decide in relative emotional "peace" while you heal from the hyperthyroidism. Everyone I know who has chosen their own treatment with careful consideration has been happy with their choice and has had a successful treatment ~ and I’m talking about people who each chose a different one of the three possible treatments. Honestly, I believe one of the markers for a successful course of treatment is a patient who went into the process fully informed and making every decision for themselves. In order to do that effectively, you need to do a lot of research. Start by reading the posts here ~ there’s a LOT of good information. Be wary of hunting the internet ~ not all sites subscribe to the same standards of medical accuracy. Not all are snake oil either. Look for seals of approval from medical groups.

Oh, and some of the recommended books on our main page can be great basic information about thyroid disorders in general and Graves’ in particular.

If you’d like to look for an endo, go ahead ~ some general practitioners can effectively treat you, but some can’t. You can seek out an endo and decide later, if you like. See how this doctor reacts to your decision to make your OWN choice. If they can "take it," then maybe they can see you through it. Open-mindedness can be one of the most important traits of a doctor. And remember, that also is YOUR choice. If your doctor is not serving you, switch. Even if you have insurance, YOU are paying their paycheck, and you don’t have to if you don’t like the way they’re treating you.

Best of luck as you go through this process! We’ll be here for you. ” title=”Very Happy” /> Remember that reading the BB is typically reading about a LOT of difficulty. People who feel well don’t come looking for advice. So don’t let the stories frighten you. This is largely a group of the newly diagnosed or those having difficulty in treatment.

[Ski]

in reply to: Beta Blockers??? What are they? #1073565

Beta blockers are only used while we are actively hyperthyroid, to control the rapid heart rate and to even out the heart rhythms. We usually wean off beta blockers after thyroid hormone levels come down. They do take the edge off the hyperthyroid symptoms. They’re usually used for heart patients, for high blood pressure or other rhythm problems.

[Ski]

in reply to: TT or RAI!?! #1073570

It’s not so much that something is wrong with your thyroid, as that it is being tricked by the antibodies to overproduce hormone. There is a third option for treatment, which we refer to here as Anti-Thyroid Drugs, or ATDs. The two choices of ATD are PTU (short for propylthiuracil, you can see why), and Tapazole (the generic is methimazole, in Europe it’s known as carbimazole). They work slightly differently to attain the same goal, which is normal thyroid hormone levels.

Hyperthyroidism makes us feel so completely out of whack that our typical suggestion is to begin by using ATDs, because that is the only treatment decision that is not permanent. In addition to that, it’s much easier to make a rational decision once your levels have returned to normal and you can think clearly.

I’ll write more later ~ just wanted to give you that third option for now.

[Ski]

in reply to: HOW BAD IS IT BASED ON TESTS? #1073593

Judy:

The best person to answer your questions about lab tests is your doctor. Believe me, they will NOT take the initiative. If you are wondering what to do about your lab results, or what they mean, you need to get on the phone and get in touch with them. I think most endo offices operate on the "squeaky wheel" theory ~ if you aren’t bugging them, you must be fine. If you feel fine, and the lab results fall within the normal range (your test results should also include a range of normal, which is different for various lab methods), then probably you don’t need to do anything. If you notice the levels dropping or rising over time, even if they are still within the normal range, you should probably get in touch with the doctor’s office to alert them. They do NOT care as much about our status as we do (they can’t afford the energy, with the hundreds of patients they likely see on a regular basis). When our disease is active, and new, they may be able to keep track to some degree, but after a while, with longer time periods between visits, they lose that familiarity with our case.

[Ski]

in reply to: HOW BAD IS IT BASED ON TESTS? #1073589

Sorry, there’s no way to know "how sick you are" based on test results. Some people have levels off the charts, but they feel relatively well. Others have levels just a little bit out of range, but they feel awful. It has more to do with your symptoms than your levels. There is no "one-size-fits-all" for Graves’ patients, which is part of the problem in figuring out what to do.

In addition to that, one treatment isn’t better than another for "severe cases." All three treatments are available to all patients, and all are capable of bringing you safely back to health.

The MOST important consideration for treatment is what makes YOU comfortable.

Typically we suggest that beginning with ATDs is helpful because you are not choosing a permanent solution, you can bring your levels down into the normal range fairly quickly, and that can help you regain your composure so that you can carefully examine your options. It’s also good to see how you react to the ATDs ~ that helps you see whether you think they’ll be a good option going forward.

Write down ALL of your questions, and try to make sure you’ve got them all answered before you leave the doctor’s office. That helps a LOT. Let us know how your appointment goes tomorrow!

[Ski]

in reply to: New to NGDF, not new to Graves #1073608

It’s possible that your thyroid has finally completely died (sometimes the dose leaves a little bit of tissue functioning), or your body could need more thyroid hormone due to your pregnancy. It’s frustrating, I know, but it’s a good thing you’ve got a handle on it. For now, in your hectic household, figure out ways that your children can help (age-appropriate ways, of course). My favorite was "what’s for lunch, Mom?" to which I would answer "I don’t know, what can you make for yourself?" ” title=”Very Happy” /> I think you’d be surprised to find out how much your older children can contribute, and they’d probably feel good about doing it.

I know this process is time consuming, and that’s frustrating. For now, limit all of your activities to MUST DO things. Make that judgment very critically ~ you may think some things are a MUST DO, but in reality they are not. Anything that can wait until you feel better, or until your schedule lightens up (next day, maybe?) ~ make it wait. You need to preserve whatever energy you DO have for essentials. Running around with the kids might be something you call essential, so if you can limit other activities in order to find some energy for that ~ well, it’s YOUR call. You know best what’s important to you. ” title=”Wink” />

[Ski]

in reply to: New Graves Patient #1073602

The nausea may just be your body reacting to the shift in thyroid hormone ~ it’s not a typical symptom, and it’s not indicative of any of the more dangerous side effects of ATDs, but you may want to just check in with the endo’s office to ease your mind. Your heart rate may stay a little bit elevated (even after beta blockers) while your thyroid hormone levels are still high, but again, checking in with the doctor is an easy way to be sure that everything’s okay. It’s possible that they’ll raise your dose of beta blockers in response, at least for a little while.

The Anti TPO ab is a test to detect the presence and measure the quantity of specific thyroid autoantibodies. The specific number is not so important, but elevated levels suggest Graves’ as a cause for your condition. Follow up tests would be more helpful, as a comparison, than the initial test. Keep in mind that it is important to have test done by the same laboratory using the same methodology, if it’s being used for comparison’s sake, because labs use different methodologies to arrive at the result, and "normal" values can be very different between two labs.

The thyroglobulin test helps the doctor determine how well your body is reacting to your treatment, so again, the more valuable numbers will come later, as a comparison to this. Decreasing figures would indicate that your treatment is progressing successfully. Again, use the same lab and methodology every time you are tested, when you’re using the test in this way.

It’s good to talk with your doctor about ALL of your questions, even when you feel you’ve got a handle on it. Write down everything that comes up between now and the next time you speak with your doctor. This is complicated, and having all the information we can get helps immensely.

Oh yes, welcome! ” title=”Very Happy” /> Glad we can help.

[Ski]

in reply to: New from California #1073604

The best coping mechanism I’ve ever heard is to serve your passion ~ do things that fulfill you, sustain you, limit the things that take your energy away.

Stress elevates our immune response, which increases the activity of any Graves’ antibodies, and that can increase symptoms. We can’t live completely without stress, but we can learn to manage it and not allow ourselves to go completely nutty, and that will help.

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