[DianneW]

in reply to: New here.. and boy, do I need help! #1073930

Hi–Wow, I think most of us here identify with a lot of what you just wrote, so you’ve come to the right place! The trouble with hyperthyroidism is that it leaves us so incapable of coping while creating behavior that causes even more to cope with. The medical system is too slow, people around us don’t understand, and we’re told to be patient when we needed to be well YESTERDAY!

I know it has to be scary for you that your marriage is going through so much strain because of this disease. I know you don’t have control over your feelings, but perhaps it would be worth finding other coping mechanisms so your husband didn’t get caught in the cross-fire of your illness. You need his support, and I’ve heard of many marriages that fall victims to this aspect of Graves’ Disease. I destroyed a dating relationship before I was diagnosed, so I know what I’m speaking of. I was not a nice person. (Later when I knew what the cause was, I learned how to cope with it a little better, even if it meant excusing myself from the room when I knew I was about to blow.) It might take some work or even some counseling, but you probably can improve in that area. You might try telling your husband that you will make an effort, but that you need his understanding if you fall short sometimes.

It helped me to simply say my feelings were out of control and I needed to get out of there until I felt better. That seemed to be better than doing what I felt like doing. I’d had several nasty spells at work, and was really afraid that I’d be disciplined. More than that, I was afraid of hurting people I’d worked with for years and who had been good friends. There was really no way to explain to anyone about the disease without sounding like I was making excuses.

It would be nice if you could get treatment started so you could get on your way to feeling better. In the past I’ve actually walked in to the doctor’s office when I needed something right away, rather than wait for calls to be returned. That’s always worked for me, either to get questions answered or to get a blood test or prescription.

Maybe others here have some ideas on what has worked for them to keep from being abusive to their family members when in that "Graves’ Rage"?

[DianneW]

in reply to: ok, lots of questions….diagnosed 2/2/09 #1073933

Let’s start with hair loss: No, you won’t go bald. Many people have varying degrees of temporary hair loss that occurs mainly during periods of severe hyperthyroidism or perhaps rapid changes in thyroid levels. It might occur when a person becomes hypothyroid and starts taking replacement hormone, or when the dose is changed. That’s when it always happened for me. The form it took was just lots of hair coming out in the brush and in the shower/bathtub drain, so that it seemed like I would surely go bald, but I never did. Then later I would see short hairs growing in all at once as the hair was replaced. It was much like what happened after I gave birth. I think this is fairly typical. You may or may not experience any hair loss.

It’s a good idea to be treated by an endocrinologist, and if possible by one who specializes in thyroid disorders. Many endos treat mostly diabetes, so aren’t really up on the latest in thyroidology. If possible, find an endocrinologist who belongs to the American Thyroid Association or the American Association of Clinical Endocrinology. You can Google those and find their members on their websites.

A thyroidectomy is simply one of the three treatment options for hyperthyroidism. Not everyone chooses to do that. Taking the antithyroid drugs first can be a good choice because it allows you to learn more about all your options and make any choice that might be permanent when you’re feeling better and not under so much pressure and your mind is working right. Antithyroid drugs are also the only choice that give you a chance (20-30%) to have a long-term or lifetime remission from hyperthyroidism and keep your thyroid gland. With radioactive iodine and surgery you will almost always be on thyroid replacement hormone for the rest of your life. It’s possible that if you have a remission on antithyroid drugs you will become hypothyroid in the future as well, since antibodies can continue to damage the thyroid over time.

I suggest you read lots of posts and then if you have more questions, any of the facilitators or other posters would be happy to answer.

Best wishes,

[DianneW]

in reply to: Mother of a teen girl with graves #1073935

Wow! That’s a lot! I’ve been the mother of teens who didn’t have Graves’ Disease, and I can guarantee you that they are moody and unpleasant a lot of the time even without THAT to deal with, so I can’t even imagine what your family is going through. (And my kids were basically good kids, honor students, not trouble-makers at all.)

Remembering how I behaved before, and for a time after treatment, I do believe it IS very much the Graves’ Disease though. That doesn’t mean it’s wrong for you to be angry at her behavior. We’re all still responsible for how we behave, in my opinion. The disease doesn’t give us license to abuse people. Apologies are in order when we behave badly, and I hope as her parent you will still enforce normal standards of behavior, with allowances for her health condition. That doesn’t mean you need to mete out harsh punishments, because under the circumstances she does have a reason for losing control when she does, and it’s reasonable to make allowances for that which you wouldn’t make for a healthy child. You might decide to accept her apology as good enough, or decide on other light consequences, but in my opinion she shouldn’t be allowed to be mean without accountability to everyone simply because of this disease. She can work on techniques for controlling her difficult emotions without taking it out on her family. If she’s having trouble, counseling is in order. (She can first try the standard counting-to-ten technique. It helped me.)

If you can afford it, family counseling with someone who is familiar with the effects of chronic disease on a family would probably do everyone a lot of good. I know from experience that it can be difficult to get a teenager to go to that kind of thing, however.

You didn’t say how long your daughter has been receiving treatment, but I think you’ll find the situation improves a lot the longer her treatment progresses. If she’s been untreated a long time it may take awhile for her to stabilize, but you may find when she heals from the effects that she’s a different (and more enjoyable) daughter than you realized. I really hope so, and wish you the best. In the meantime, hang in there! I know it can’t be easy.

[DianneW]

in reply to: LAB TESTS #1073938

Kathy, ask your ophthalmologist if your high TSH may have had something to do with your eyes acting up again. Being hypo is a risk factor for worsening of eye disease. It was a good thing you get checked more often than once a year! I’m surprised too that your endo would think letting it go to yearly was okay. (Well, maybe not SO surprised, but disappointed.)

Mu endo used to check the Free T3 and Free T4 in the early years following my RAI when I was still changing often, but now 13 years out he usually just checks the TSH.

[DianneW]

in reply to: New here, have lots of questions #1074152

Welcome, scoutgirl! It’s not that unusual to have families (husbands) that don’t "get it". One possible reason for that is that it’s painful for them to realize that you have an illness that is as serious as it actually is, so it’s easier to live in a kind of denial, believing what you have is not that bad.

Have you had emotional outbursts? If so, that’s not unusual. When you’ve hit your hubby in the head with a sack of horse feed and screamed at the top of your lungs a few times, he should "get it"! (Just kidding!) Anyway, welcome to the club!!

[DianneW]

in reply to: New and Confused #1073946

Hi Rhonda,

It sure sounds like you’ve had more than your share of difficulties, but at least now you’re getting treatment for your Graves’! If all goes well the methimazole will start working and within 4-6 weeks you’ll start feeling much better. In the meantime, you can begin learning about RAI and surgery, or you might decide to stay on methimazole if your nodule turns out to be harmless. Nodules don’t seem to be that unusual among Graves’ patients, and I have only heard of one that was cancerous. Anyway, it’s great that you have a supportive husband, but still difficult to be hyper when you have little ones to care for. Let’s hope your meds start helping you very fast!

I wish I knew of a book to explain your illness to your child, but I don’t. Anyone? It would be nice to have one specific for Graves’ Disease, but I’m quite sure that doesn’t exist.

Your anxiety should level out when your thyroid levels settle down, in case you weren’t aware that was the cause. The cause of Graves’ Disease isn’t known, other than that there is a gene for autoimmunity and there also has to be a triggering event. Researchers aren’t certain what the various triggers are, but it’s still under study. Viruses, hormones, and severe stress are all suspect. Some people have associated the onset with accidents or other traumatic events in their lives. Basically it’s impossible to know, but I know many people who believe they know in their own case! (It’s not unusual for it to begin after the birth of a baby.)

We’re glad you found us.

[DianneW]

in reply to: How long on Methimazole? #1073951

Antithyroid drugs are considered safe for long-term therapy, as long as the patient’s hyperthyroidism is controlled with a low dose. A 2005 study in the European Journal of Endocrinology on the matter compared long-term methimazole treatment with radioactive iodine treatment and concluded that they are comparable in terms of cost and safety. The patients in this study took methimazole for 10 years.

Also, Dr. David Cooper said in his NEJM review article on antithyroid drugs that long-term therapy is a safe option.

Some endocrinologists still are uncomfortable with treating their patients on ATDs long-term, and if your doctor is one of them you should talk to him about the reasons for that. His reasons may be good, or he may be outdated. You also have the right to discuss the articles I mentioned, or to get a second opinion, and weigh all the evidence you hear. Then, you get to decide for yourself what you want.

Best wishes,

[DianneW]

in reply to: Orbital Decompression Surgery #1074396

Hi Delores,

That must be really rough for your son. I realize you can’t tell so early after his surgery if his results were disappointing or if he still has a lot of swelling from the surgery, but this early it could easily be surgical swelling still. DO ask his ophthalmologist during the checkup!

I suggest you ask if the surgeon thinks the decompression that was done will be sufficient to bring the right eye back where it belongs; and if not, whether another decompression can be done. Ask when you can expect to see maximum improvement. His surgeon should have a good idea based on the particular type of decompression that was done and how he’s progressing to this point. (There are many different methods for orbital decompression.) If there isn’t a complete plan for a sequence of surgeries to reconstruct Steven’s eyes to pre-Graves’ state, both functionally and cosmetically, you might want to discuss that with the surgeon too, as well as whether the insurance would pay for all of the procedures.

In my case, for example, a blepheroplasty was done in conjunction with lid retraction surgery, and the surgeon charged a flat $2,000 out-of-pocket because the insurance didn’t cover that (this was over 10 years ago). The blepheroplasty was removal of the fat bags that had been pushed out around my eyes under the skin, both upper and lower. These fatty areas hold a lot of fluid, just like the fat behind the eyes, and are part of the disfiguration many people with Graves’ Disease get to some degree even when the eyes are only slightly involved. I’m so familiar with the look now that it’s pretty easy for me to spot someone with TED.

I should have clarified that it’s common to wait 6-12 months following a decompression before doing lid surgery, so that the lid position will be finished changing. So if Steven does have lid retraction in his right eye, surgical correction may have to wait. Ask his surgeon when he would recommend doing further lid surgery. (It might be a good idea to write down the questions you want to ask.)

Radiation to the eyes will help when the disease is in the active stage, but by the time it’s settled down to the point that corrective surgeries are being done, it’s beyond the point where it would be effective.

Tell Steven that he’s not alone in wearing an eye patch and/or shades during this process. This would be particularly hard for a young person. I have so much empathy for you mothers out there who have to see your children go through this! They’re so fortunate to have your love and support.

Best wishes

[DianneW]

in reply to: Questions #1074115

Has your ophthalmologist done an MRI or CT scan to check your eye muscles? Most of the time this is done with Graves’ patients because it’s not possible to tell outwardly what’s going on inside.

Was it the pressure behind your eyes he measured? More likely he measured the pressure inside your eye, which leads to glaucoma. I’m not aware that the pressure behind the eye can be measured, but I don’t know everything.

If he’s an ophthalmologist who sees lots of Graves’ patients then he’s probably making the decision not to do those tests for a good reason, but I hope you’ll (tactfully) question him on his qualifications to be treating you. Many ophthalmologists are well-trained for other diseases of the eye, but really don’t have the experience for TED patients.

I know it’s frustrating with the eye disease not knowing what will happen; whether it will improve on its own or continue to get worse, and having no choice other than to wait it out and let it have its way. Just get out your dark glasses, your eye drops and ointment, and join the ranks of the rest of us! When the storm is over, there are surgeries to improve your appearance and comfort considerably if you need and want them.

Best wishes,

[DianneW]

in reply to: Orbital Decompression Surgery #1074394

Hi Judy,

This eye disease is miserable in many ways. I’ve been dealing with it for many years myself, and have had 8 surgeries so far, including orbital decompressions on both eyes. The decompressions were the best surgeries I ever had.

When I woke up from the decompression surgery I felt an amazing relief from the pressure, and I reached up and felt through the bandages and could tell that my eyes weren’t sticking out as far. I was SO HAPPY! I looked like something out of a horror movie for the first week, but I didn’t care, and by the second week the bruising and swelling had improved enough that I could tell quite a bit what the results would be (although generally full improvement takes 6 months to a year).

The decompression surgery won’t repair all the damage that this disease does. Depending on your particular needs, your surgeon will remove varying amounts of orbital fat from around your eyes and eye muscles, and probably also burr holes into orbital bone that connects with the sinuses to allow the expanded eye muscles to fall back in that space instead of protruding. The bags under your eyes may be a result of some of the orbital fat that has been pushed out into the skin around your eyes, and that will have to be removed in a separate procedure that is considered cosmetic and is generally not covered by insurance.

After the decompression surgery, many patients have some degree of double vision, and that might need surgical correction. Sometimes the double vision is temporary and will correct in a few weeks or months. Your ophthalmic surgeon should talk to you about that as a risk of surgery. I had some temporary double vision following my decompression that cleared up after a couple of months. (I would do the surgery again even if it caused double vision requiring surgery to repair.)

Another problem that might need surgical attention after the decompression is eyelid position. Once your eyes are back in a more normal position, your eyelids might not be in the right position on your eyes. If not, they can be surgically repositioned so they’re not either retracted or droopy. I don’t know if you’ve had a problem with eyelid retraction as some TED patients do, but if so, this would be the ideal time to correct it.

If your eye disease is extremely severe, you might not get all the results you want in one decompression. I know several severe cases who have had multiple decompressions in order to get their eyes back anywhere close to where they were.

This probably isn’t exactly what you were hoping to hear. I understand that we all want to look exactly the way we did before this disease ravaged our eyes. I can tell you now that if you’re a very severe case, that’s probably not a realistic hope, but the reconstructions can make you much more comfortable and make you look pretty close to the way you used to look. It may not be as fast as you’d like. I’ve been going through surgeries for 11 years. It won’t be that long for you, I pray. (I’ve had some unusual complications.)

I understand what you are saying about how you feel about the way you look. I’ve cried many angry tears myself. I wish you could get together with the rest of us who know what it’s like, at one of the conferences.

But the decompression will do more for restoring your normal appearance than you can imagine, so BRAVO to you for having it done! The procedure itself sounds really scary, but I didn’t find it as painful as some of my eyelid surgeries. Make sure to follow your doctor’s instructions about putting lots of ice on the first 24 hours to keep down the swelling, because that will help with the swelling and bruising, and help you heal faster. When you get home, use frozen baby peas in zip-lock bags for ice packs. They conform to the eye area, keep the cold fairly well, can be re-used quite a few times, and you can exchange one pack for another as soon as they begin to thaw. If you buy a very large package before your surgery and have it already broken up into soft quart-sized zip lock bags, they’ll be ready for you when you arrive home.

If you have other questions before you talk to your ophthalmologist again, or want ideas for questions for your ophthalmologist/surgeon, let me know. Other than that, I wish I could give you a big hug. I think you’ll be really glad you had the surgery.

Best wishes,

[DianneW]

in reply to: running with untreated hyperthyroidism #1074045

The term "my endo won’t let me is not in my vocabulary, since I can always convince him it’s my body and my choice, even if I have to change to a doctor who will go along with my choice. Perhaps the question isn’t whether he will LET you, but whether it’s in your best interests to take ATDs if your WBC is already low. It’s definitely something to discuss. I’ve known several people who went ahead with a low WBC and have done just fine. The ATDs didn’t lower it further for them. When ATDs do lower the WBC, as you probably know, this is reversible by stopping the drug, and it’s rare to have serious consequences.

I can see that you’d be concerned about the cumulative exposure of radiation if you work around it on a constant basis. This does make it more important for you than for some others to avoid adding to the total whenever you can, but there are times when you might have to weigh the odds. Only you can decide if this is one of them.

Please don’t be overly swayed by my negative RAI experience, because many people have a much quicker and more comfortable recovery than I did and recommend it highly. Ten years ago when lower doses were given routinely I heard of many stories like mine, but more recently as larger doses are more often being given, it seems patients report faster recoveries with less discomfort. I talked to a Mayo Clinic endo at the LA conference, who attributes the faster recoveries to the trend to give larger doses, and he recommends larger doses for that reason.

From what I see, some people are motivated from the outset to do what it takes to preserve their thyroid glands, and those people generally choose ATD treatment. Since there are choices for long term management with ATDs, many of those people are successful if they are really serious about it. Other people simply don’t want to mess with taking the pills reliably and having frequent blood tests, or worrying about their levels all the time. They want it all over and done with, even if it means destroying the thyroid and going on replacement hormone. Others fall somewhere between. I don’t know if you have identified yourself with a treatment outlook yet, but it might help you to know what’s important to you.

I hope you can get whichever treatment you want started ASAP and get better soon, and back to running. In the meantime, think of all the things you never have time to do when you’re running, and get some of them done. ” title=”Cool” /> Maybe you’ll be well sooner than you think!

[DianneW]

in reply to: running with untreated hyperthyroidism #1074043

Hi Lisa,

I had RAI, but if I had it to do over I would try ATDs and try to keep my thyroid if possible. If I didn’t do well on those I’d have surgery. As it turned out I had a difficult time getting stabilized following RAI and it was more than a year before I was well enough to get back on the bike. I chose RAI because of the possible risks of the other treatments, not realizing that RAI had some downsides that made the small risks of the other treatments worth weighing seriously.

I did a lot more cycling, and did it better than ever following my treatment, before continuing problems with eye disease grounded me. Now my eyes are so dry that I can’t be outdoors in any moving air, and can’t even have fans blowing on my eyes indoors or in the car. I wear moisture chamber glasses if I have to go outside, but they have vents so they don’t fog up, and can’t handle windy weather. Unfortunately, all my exercising lately has been in the gym.

Ask your endocrinologist for sure, but it could be that ATDs are the quickest way for you to get back to running if you can tolerate them okay. Most people are feeling much improved in 4-6 weeks; some a little sooner, if all goes well that is.

All my best to you,

[DianneW]

in reply to: How long should I plan be off work for surgery or IRA? #1073971

Yes, we need a Graves’ fairy with a magic wand to make it all go away. If I had one, I’d fix EVERYONE!! Those treatments all work, but they aren’t fast enough, are they?

I remember those rough times when I felt so awful and everyone was telling me to just be patient and I’d feel better. It seemed like better days would NEVER come, but they do—I promise!

It’s got to be worse when it’s your child and as you said, you’re watching him feel miserable. Take heart that no matter whether you and he choose surgery or RAI he WILL get better, and that’s what really counts!

[DianneW]

in reply to: How long should I plan be off work for surgery or IRA? #1073969

Hi Amy,

For most people surgery gives the most rapid results, but of course that has to be balanced against the risks inherent in surgery. Have you talked with his doctors about how soon it could be done in his case, or whether they think it’s indicated?

If you and he were more comfortable with RAI, the effects can usually be somewhat hastened by giving a larger dose. The results aren’t guaranteed because every thyroid seems to react in a unique way and radiologists (as much as they’ve tried) haven’t found a reliable formula for predicting a uniform response. A larger dose will result in fewer treatment failures, and destroy more thyroid tissue, leaving less of the thyroid to later cause problems with adjusting replacement hormone, which can be a problem for some patients for quite awhile following RAI.

What happens is that the thyroid tissue not immediately destroyed by RAI is still radiation-damaged, and while it continues to produce thyroid hormone (even though the patient may be hypothyroid and taking replacement hormone) it has a limited ability to reproduce itself, and a shortened life span. Add to this the effects of thyroid antibodies, especially TPO antibodies (that cause hypothyroidism), which many GD patients have, and this thyroid tissue continues to die out.

When it happens fairly rapidly, the patient may go through a really rough time of unstable thyroid levels that can last for a year, or longer, and be very uncomfortable. If it’s a slow process, the patient will more likely feel well, and the replacement adjustments will take place on a yearly basis.

If most of the thyroid can be destroyed initially, most of this adjustment phase can be avoided. The problem is, there are no guarantees that this will happen. The endo and radiologist can pick a dose of RAI with that in mind, and end up with a treatment failure completely, or with a slowly failing thyroid.

RAI hasn’t been given to teenagers or pediatric patients for too many years yet, because doctors used to worry that young people were more susceptible to the effects of radiation. Therefore, no really long-term studies have been done on this population to assess the safety. While all evidence so far indicates it’s safe in teens and children, know that the final results will include the outcomes of young people who are currently choosing RAI. Some doctors are convinced now that it’s safe, and a few others are more cautious and advise to wait for some long-term results.

With surgery, a fixed amount of thyroid (often pretty much the entire gland, though not all of it can ever be taken) is immediately gone. It takes some time for excess hormone already stored in the body to be used up, but when that process is completed (usually within a week), the hyperthyroidism is gone for good. By that time the endo has usually already started the patient on replacement hormone and it’s had a chance to start becoming effective, so there are ideally no huge drops or wild fluctuations. There may well be a few months of discomfort while exactly the right dose is found, and even when levels are normal it takes time to feel well again; but until stable normal levels are achieved, regaining good health won’t begin.

These are some issues I think you and your son would do well to discuss with his doctors, and perhaps that would help him make a decision. I hope this helps.

Best wishes,

[DianneW]

in reply to: Thanks to All #1073973

I’m so glad to hear you’re doing well, and congratulations on getting off the smokes! I know that’s hard because I was the worst addict ever, but have been free of that 16 years now. It was a really good thing that I quit, because if I’d still been smoking when I got TED I hate to think how bad my eyes would be now! (Even second-hand smoke is thought to contribute to worsening of eye disease.) Studies show that cigarettes are also connected to thyroid autoimmunity, so if you’re in remission staying off the cigarettes has to be good. Keep up the good work, and congratulations on the remission too!

Best wishes,

[Author]

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