[Ski]

in reply to: Two Different Eyes #1070921

As long as your eye disease is in the phase they refer to as the "hot phase" (at the beginning), it is likely that Prednisone can help. There is also some argument to be made for directed radiation (beams directed at the eye socket), and if one works for you, it is likely both will work, which minimizes the need for either. In other words, you can take less Prednisone if you also use directed radiation, and you don’t have to have as much radiation if you are also taking Prednisone ~ this limits the possible side effects from either treatment. Prednisone has some serious potential side effects, so you need to discuss this with your ophthalmologist to determine whether it’s a good option for you. The main goal is to limit the amount of damage that is done in the hot phase, because what remains at the end is typically scar tissue from that period. The less severe the changes, the less scar tissue there will be, and the less the eyes must improve in order to be close to "normal" at the "cold phase."

[Ski]

in reply to: Research re Hiroshima connection? #1070894

My endo speculated wildly that living near Three Mile Island may have been my "environmental trigger" ~ not sure if there’s any truth to it, but I know there’s also speculation about Chernobyl and subsequent thyroid disease. I don’t know that anyone is willing to say conclusively.

[Ski]

in reply to: Weight gain during Graves disease #1070985

Since you’ve had such a hard time, I would suggest that you make lifelong changes in your diet, rather than quick bursts of large changes. I’m not sure if you’re aware, but the less we eat, sometimes we can sabotage our intentions ~ when our body senses that we may be eating less than we need to make it through to tomorrow, it hoards the fat we already have in order to save our lives. It’s important to eat steadily, through the day, keep that furnace burning. In addition to that, if you are exercising, remember to build up slowly (overdoing can keep us from exercising on a regular schedule), and also think about exercising in the morning as a routine ~ it can escalate your metabolism all day long, so you get more benefit out of it. Even a little exercise in the morning, finishing the whole routine in the evening, is better than doing it all at the end of the day.

Wishing you luck! It IS most important to get healthy. I think you’ll find that when your thyroid hormone levels are normal, and they’ve been stable for some period of time, your weight issues should be much easier to resolve.

[Ski]

in reply to: Selenium use in Grave’s Disease #1070908

Supplements are tricky ~ always make sure you talk with your pharmacist and regular physician to make sure that the supplements and dose levels will not adversely affect anything else that’s going on with you. If it helps you, great, but in the absence of specific results across a broad population, it’s something to be managed very carefully.

[Ski]

in reply to: Two Different Eyes #1070919

It is very common for TED (thyroid eye disease) to manifest differently in each eye. Once it has begun, it’s kind of a "wait-it-out" kind of thing, until you reach a confirmed cold phase, then you can discuss the options for correcting remaining issues with an ophthalmologist, preferably one who has experience with all of the procedures. It’s possible that your eyes will "match better" when you get to the cold phase, but no guarantees. In the meantime, I know some people have found emotional relief in lightly tinted sunglasses they can wear, even indoors, so they aren’t so self-conscious about talking with people and meeting their eyes.

[Ski]

in reply to: Selenium use in Grave’s Disease #1070905

In more than ten years on this board, I’ve never heard it discussed, sorry.

[Ski]

in reply to: No insurance, how to pay? #1070929

I’m not sure where you are in your treatment, but if all you need is replacement thyroid hormone, it doesn’t matter if you have insurance coverage ~ it’s VERY cheap, and even cheaper when you buy outside of insurance, in most cases (the co-pays and limits on how much we can buy at once end up adding up to more than "rack rate," just buying 100 pills at a time). I’m not sure of the intricacies of pre-existing conditions and approvals ~ I know insurance companies are all too thrilled to get themselves off the hook for anything, so it’s a minefield ~ but lab tests should always be covered, and if not, again, they are relatively inexpensive.

For most insurance companies, they cannot refuse coverage if you have had continuous coverage in some form or other up until signing up with them.

For your employers, please don’t think this will keep them from hiring you. There’s no need to disclose it ~ it’s not something that can lead to workplace accidents or other issues, so you are not under any obligation to say a word about it during an interview.

In any event, there ARE resources, no matter where you are in your treatment. I’ll send you a private message with a link that will give you some idea of organizations in your area that are dedicated to helping people just like you.

[Ski]

in reply to: My lack of understanding myself #1070941

You may want to find some posts here by OTHER people who are talking about how they feel, print them out and have your family read them ~ that may shine a light for them.

I would also suggest taking a very good look at the "everything" you do, that you don’t get help with. I am reminded of the joke where the husband says to the stay-at-home wife, "you don’t have anything to do all day, it must be great," whereupon he arrives home from work that day to find the kids running around with the garden hose, the house in shambles, and his wife happily napping. When he says "what happened?" she says to him "what? All that nothing I do around the house, you remember ~ today I decided not to do it!" ” title=”Very Happy” /> In other words, let them pay the price for not helping you. Perhaps you need to decide not to LOOK at some particular mess or other task. Let someone else notice that there’s not a clean dish in the house to put their sandwich on. Let someone have nothing to wear because they did not help with the laundry. We all know what will put the world in crisis mode, so you will need to keep some level of normalcy, but not everything MUST be done, and you need to consider your health. One of our difficulties is that, technically, we can probably drag ourselves around and do everything, but we pay dearly and it makes it harder and harder to handle everything. And our resentment just grows, which also makes it harder to heal.

I think nearly everyone I’ve met on this BB has said that they are the one who does everything, the household could not run without them, they always pick up the ball and run with it, they don’t know how to NOT be that person. Perhaps that’s the most important lesson we all need to learn from this ~ to back off, let someone else do it (let them do it wrong, even!), consider YOURSELF as priority one, for a change.

One of my favorite discoveries was this: "Mom, what’s for lunch?" "Gee honey, I don’t know, what do you want to make? And while you’re at it, will you make me one?" ” title=”Very Happy” />

Think of this happening to your very best friend. Wouldn’t you fight like a tigress for her health? Do the same for YOU.

If you can’t get peace in your own home in order to get some rest, hire someone to take over for a while and go somewhere quiet, where you CAN rest. Whatever compromises need to be made, make them.

I realize it’s not easy. Remember that you’re worth it, and that IS the bottom line.

[Ski]

in reply to: Graves’ and Lasik #1070931

I’ve been asking this question for years, and unfortunately there are no good statistics to share about Graves’ patients and their experience with Lasik.

A couple of things to consider, though. First, Graves’ Disease changes the quality of our tears. Whether or not we have TED, our tears are less viscous, much thinner, than the average tears. We can manage the resulting dryness with artificial tears ~ moisture in our eyes is key. When our eyes are chronically dry, we risk corneal ulcers and cuts that may result in loss of sight. Lasik also results in chronically dry eyes, so it could easily double your trouble.

In addition to that, studies show that 100% of Graves’ patients have SOME level of TED, even if they do not experience the worst symptoms. Presuming that’s so, trauma to the eyes has the potential to increase antibody activity around the eyes, which could trigger TED symptoms.

For me, it hasn’t been worth the risk. My doctor keeps asking, mentioning that I have "good corneas" and probably would have a good result from Lasik, but as soon as I remind them I have Graves’ and I don’t want to risk it, they shut my file and nod. I’ve asked them if they have specific info about GD patients and Lasik, and they don’t, so if the professionals don’t have specifics, I have little hope that the information even exists in any form I can use to make my decision.

Let us know if you choose to do it, and how it turns out!

[Ski]

in reply to: T3 therapy advise #1071076

That’s a great question for your doctor ~ make sure you ask ALL the questions you have. If it’s true that your body is having trouble converting T4 to T3, though, taking more T4 wouldn’t help as much as taking T3 directly. It is definitely a tightrope. Just make sure you’re aware of what’s going on with you, and keep in touch with your doctor, and everything should work out okay.

[Ski]

in reply to: My lack of understanding myself #1070937

The thyroid meds may take a while to help you feel better ~ they’re working, no question, but our body protects us from radical shifts in thyroid hormone and things typically happen rather slowly. Believe it or not, you may wait 3-4 weeks or more before you really notice that you’re feeling better.

In the interim, though, many doctors still prescribe beta blockers to reduce the anxiety and tremors. You may want to ask about that.

It’s impossible for us to say whether you should try to continue with work, but if your health insurance is at risk, I’d say do anything you can to keep from losing the insurance. You’re at a very early point in your treatment, and you will need lots of appointments, lab tests and monitoring for a while. If necessary, try dropping some of your "usual" after-work activities in order to preserve energy for your work environment.

Your work environment is also emotionally stressful, so you should put EXTRA effort into finding things that shore up your emotional strength. Whatever YOU love, whatever makes you feel whole, satisfied, and sustained ~ make sure you do that. For everyone, it’s different. Could be a hot bath, a walk in the neighborhood, watching the sunset from your favorite local mountain, painting a lovely picture, writing a beautiful poem. Make sure you take the time to do it without guilt. ” title=”Wink” /> Very important. You are ILL, whether you like it or not, whether you look it or not. You need to protect yourself right now.

We’re so glad you found us. ” title=”Very Happy” /> Please ask any questions you have, that’s what we’re here for!

[Ski]

in reply to: radioactive iodine treatment #1070967

They do both have the potential to cause liver damage. The most recent studies about kids and PTU were pretty scary, so I think there’s a big rush to take younger patients off and pursue other treatments. Still, the choice SHOULD be yours. You can test liver enzymes while taking methimazole to know whether liver damage is occurring.

That said, if you are interested in pursuing RAI, your daughter should not have a lot of concerns in the first few days after taking it. Most of us don’t have pain, or even feel very differently, right away. There is a phenomenon we call "dumping" that can come up a couple of weeks after RAI, due to the dying thyroid cells releasing the thyroid hormone they’ve been storing. It is typically a transient effect and over within a few days. Some doctors authorize the patient to take more of the beta blocker if they notice certain symptoms. That’s something to quantify and discuss with the doctor specifically, prior to the treatment, just in case. I never had any major effect from "dumping" after my RAI, so I know (at least for myself) that not everyone experiences it.

Disposable plates/utensils are usually recommended ~ and remember BOWLS! I nearly forgot, and I love soup. I would’ve been SO mad. ” title=”Very Happy” />

Here are the basic mechanics of what’s going on just after RAI ~ the thyroid takes up a certain percentage of the RAI (typically it should be the same percentage of uptake you get from the scan). The body excretes the rest, through the body’s fluid waste channels (urine, saliva, sweat). That lasts about 48 hours. During those 48 hours, you just want to make sure she doesn’t expose anyone else to the RAI that’s being excreted. It’s a matter of protecting those who do not NEED treatment. So, no sharing plates/cups/bowls, no kissing, limit touching. There’s only a TINY amount in the saliva and sweat, but overcautious is best. In addition, you want to minimize the amount time the excess RAI is stored in the bladder before being excreted. For that, the patient should drink lots of water and urinate often.

My doctor suggested getting gardening gloves (the kind with "knobby" things on the fingertips) so I wouldn’t freak out over every single thing I touched. That really did help. I had a new pair for each day, for three days, just to be sure.

One thing I would suggest you do right now is to touch base with the doctor who will provide the RAI dose (if you choose to pursue RAI as treatment). My doctor was literally going to give me the instructions moments before the dose. I had sent my family away and was about to be "sequestered" for several days, yet that was the moment he felt appropriate to tell me I should have all kinds of special things on hand. So I should shop within the first hour or two? I didn’t think so. Luckily, I already had a lot of the instructions before I went, from this very board. I would’ve liked to have the doctor’s list MUCH earlier, and it was rather astonishing to me that they had not thought to provide it ahead of time, so I always suggest that people ask for that as soon as they know this is the treatment they will pursue.

"Coming down" from hyperthyroidism can be VERY weird, but it typically happens pretty slowly, even after RAI. It can take six weeks just for the body to flush out the excess thyroid hormone that was in the bloodstream before RAI, so you may not see any appreciable changes in her behavior right away. There may be some hair loss, which is due to the fluctuating thyroid hormone, NOT the radiation. Our body protects itself from radical shifts in thyroid hormone by removing resources from hair and nails, and other non-essential parts of our body. Until her thyroid hormone levels are normal, AND STABLE, hair loss may occur. Typically it is not radical (not like chemo), but it can be startling. If you can, talk to your daughter about getting her hair cut short, in a style that doesn’t require much "fuss." That can limit the amount of hair she loses.

As her thyroid hormone levels drop, she will naturally travel through the normal ranges, and ultimately go hypothyroid, so you may see a period of time when all seems pretty well, but the goal of RAI is to destroy the thyroid, so keep careful track of her symptoms and make sure you get her blood tested as soon as you think she may have gone hypo. The sooner she starts on thyroid hormone replacement, the easier the transition will be. Look for four or five of the traditional hypo symptoms, happening frequently. Make sure you have access to a lab, whenever you feel it’s necessary to get her tested. Blood tests are really the ONLY way to know where she stands ~ many symptoms are the same, between hyper and hypo, so we can’t really trust our feelings when things are in such dramatic fluctuation.

I know this is a hard time for both of you ~ gathering information is the best thing you can do right now. Talk frankly with your daughter about what you’re learning. This is going to be a lifelong issue for her no matter what course you take right now. She will always need to be aware of her thyroid hormone levels and what she can do to keep them stable.

Let us know how it’s going!

[Ski]

in reply to: Premenopausal RAI question #1070951

All I can say for a certain fact is that the hormones can affect each other ~ I was premenopausal when I had RAI and I didn’t notice a specific issue with these things, but as you say, it’s ALL messed up while we’re sick, so it may have just been similarly messed up when I was recovering.

[Ski]

in reply to: Why I should I go to specialist? #1071013

An endo is more likely to know more about Graves’, but it’s not always so. A lot of endocrinologists keep their focus on diabetes (the bulk of any endo practice), and do very little with thyroid patients, so it’s kind of a tightrope to walk. I would see the Internal Med doctor your GP recommended, and see what you think of them. Take along questions, and even some questions you may already know the answer to (to see if they are even as well versed as YOU are). It’s not necessarily true that "only" an endo can treat you successfully.

[Ski]

in reply to: I have a question about test #1071050

Without a scan, that’s all they know. The scan gives them an idea of HOW the thyroid is overproducing, whether it’s coming from one spot (a nodule), or spread across the whole gland, or something else. It’s not a damaging pill, it’s just a diagnostic tool so they can observe the pattern of uptake in his thyroid.

We really can’t make specific comment about test results ~ it’s good advice to make sure you receive copies of all his lab results, so you can start to learn about them and what they mean, see how they progress, and also so that you always have data for the next doctor (just in case).

Let us know how it turns out!

[Author]

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