[Kimberly]

in reply to: My Story. #1066760

Hi Laura – Welcome to the boards! Have you seen an ophthalmologist for your eyes? The reason I ask is that once the eye disease runs its course (which can take 2-3 years), there are some surgical options that can help you with the bulging. Of course, any type of surgery carries risks…but I have seen some truly amazing "before" and "after" pics where the surgery made a huge difference in how the eyes look. The catch is that surgery is NOT recommended until the eyes reach what we call a "stable" phase — meaning your bulging isn’t getting better OR worse. This is why it’s a good idea to get an ophthalmologist involved early on. Best of luck!

[Kimberly]

in reply to: Afraid of RAI #1066428

Hi Annie – If the meds are not an option, your other two choices are RAI or thyroidectomy (surgical removal of the thyroid). Your doc is correct that you do not want to leave the hyperthyroidism untreated. If you do a search on this forum for either RAI or Thyroidectomy, you can read stories from members on this board who have been through these procedures. But you won’t necessarily have the same experience with a particular treatment option as someone else, so it’s best to weigh the pros and cons with your doctor to determine the choice that is right for you. Best of luck!

[Kimberly]

in reply to: Graves’ Eye Disease #1066472

snapshot wrote: my question is …do these side effects go away???

Welcome! Yes, many patients do see an improvement in their eye symptoms once the eye disease has run its full course. (Which can sometimes take 2-3 years). This is one of the reasons surgery is usually postponed until patients are in the “stable” phase, where symptoms are not getting better OR worse. Some patients will still have residual issues (like bulging or double vision) that need to be surgically corrected once this stable phase is reached – but other patients will see enough improvement that surgical intervention is not necessary. It’s a good idea to get an experienced ophthalmologist on your team early in the process, so he/she can monitor your progress.

[Kimberly]

in reply to: Nodules #1066488

Also, keep in mind that thyroid nodules are fairly common. MANY people develop nodules (especially later in life) and never even know they exist! As Jake said, definitely check with your doc to see if he/she believes that yours warrants any further testing. Best of luck!

[Kimberly]

in reply to: Graves’ Eye Disease #1066464

Hello – Sorry you are dealing with all of this! Once the eye disease runs its full course, it is *usually* gone for good. (Although there may be residual issues such as proptosis /bulging or double vision that need to be surgically corrected). However, in rare cases, the eye disease *can* flare up again. One theory is that a relapse is more likely if the patient ends up hypO — or goes hypER again. Again, this is just a theory — but hopefully, you are getting to the point where your thyroid levels are stable again. And it would also be a good idea to establish a relationship with an ophthalmologist who can see you through this process.

There are plenty of folks here who have been through the eye disease, so feel free to ask questions. Best of luck!

[Kimberly]

in reply to: Embarrased but recognizing that I need some help. #1066508

Hi Brooke – Welcome aboard! No worries…I deleted the extra post. Our board requires that a moderator approve each member’s first post as a way to try and keep SPAM off the boards. You wouldn’t believe how many spammers post here, thinking we will buy their stuff or visit their illicit web sites. We just want to FEEL BETTER — and shouldn’t have to put up with all their nonsense!

I’m sorry you are going through such a frustrating time. Yep, most of us on this board have experienced the emotional rollercoaster that you described. You should start to see some improvement when your levels are stabilized.

In terms of dealing with stress, there is no "one-size-fits-all" solution. It’s about trying different techniques, and figuring out what works for YOU. Some patients have found relief by doing a formal meditation or yoga practice, but start with a list of the things that bring you joy in life. Maybe it’s reading, walking, playing with a pet, visiting a friend, or taking a bubble bath. (A word about exercise: make sure you clear any activity program with your doctor first, as we are usually cautioned against doing intense excersise while we are stilly hypER).

In terms of diet, again, there is no "one-size-fits-all" approach. But in general, focusing on whole, fresh foods and limiting processed foods is a great start. If you are dealing with weight loss, be sure to get plenty of protein in so you can start re-building that lean muscle mass. Although I have not heard of a specific issue with alcohol and Graves’ — women are usually cautioned to limit alcohol to one drink per day or less as a general guideline for good health. (And no, we can’t save them up throughout the week and drink them all on Saturday. ” title=”Very Happy” /> )

As for the issues with your boyfriend, can you have him visit this site to get an idea of what you are going through? Also, you didn’t mention where you live, but if you go to the GDF home page by clicking the butterfly logo at the top of the page, you can see a listing of cities that offer in-person support groups. Also, this is a ways away, but I would encourage you both to attend our annual conference, which is usually in the fall and includes breakout sessions for friends and family members.

Best of luck!

[Kimberly]

in reply to: Lab Results, do I have Graves? #1066517

Hi Kaylasly – The antibody tests *can* be indicative of Graves’, but there are other conditions that can potentially cause an abnormal result, so that’s why the official diagnosis needs to by made by your medical provider.

Have you discussed your dosage change with your doc? Occasionally, hyper/hypo symptoms can overlap — and it generally takes several weeks to see the results of a dosage change. I know of patients who have made dosage changes on their own…but they ended up being wrong about whether they were hypo vs. hyper…so they ended up actually making things worse.

Some patients feel better on synthetic thyroid hormone — while others do better on the natural hormone. Again, this is a decision that you will want to make in conjunction with your doctor.

Best of luck!

[Kimberly]

in reply to: Not going to do radiation or surgery…am I a minority? #1066557

Sue Conard wrote: My question to any facilitator that can answer this for me is WHAT HAPPENS to those antibodies that we are producing "IF" we have our thyroid removed?? Can the eye disease WORSEN?? Will it eventually affect my other eye??

Hi Sue – One of the presenters at last year’s conferernce shared a study that compared antibody levels in Graves’ patients following treatment of Anti-Thyroid Drugs, RAI, or Thyroidectomy. With both thyroidectomy and ATDs, average antibody levels were significantly reduced over a period of 12-18 months. With RAI, the average antibody levels spiked after the first 6 months of treatment, and then were gradually reduced over a 3-5 year period. At the end of year 5 with RAI, antibody levels were still somewhat elevated, although much lower than they were prior to treatment.

Keep in mind taht these were "average" levels from all of the patients in the study — so some individual patients might have had better or worse results with the various treatments.

Also, any type of surgery does carry some level of risk, so this is a decision that is best made in conjunction with your endocrinologist…and after consultation with a thyroid surgeon.

Best of luck!

[Kimberly]

in reply to: Sorry #1066522

No worries – I actually don’t see the duplicate post. Perhaps it’s already been removed…or it got lost in cyberspace!

[Kimberly]

in reply to: Went hypo..on levoxyl..when does it kick in? #1066732

"Waiting4Answers":1fi5accl wrote:

PS – On a side note, my husband who has been wonderfully supportive 99.378% of the time during the last 6 months I’ve been dealing with this said something odd to me recently… "It’s not like you still have Graves’ Disease because you did away with your thyroid. You’re only hypothyroid now, right?" I really had no answer… my thinking was once diagnosed with GD, I’d always have GD. I’m hoping he was just having an off day, but if it comes up again, any ideas on how I can enlighten him?[/quote:1fi5accl]

Interesting question on whether or not you still have Graves — this actually caused quite a spirited discussion during one of the breakout sessions at our conference last year! Hopefully, someone who attended that session can add some insight. ” title=”Very Happy” />

One of the presenters did share a study that the Graves’ antibodies responsible for attacking the thyroid can still linger in our system…it’s just that they can’t cause hyperthyroidism if the thyroid is no longer active. Also, keep in mind that in Graves, the eye disease can run on its own schedule…sometimes starting before thyroid issues ever occur, or starting after we have been through treatment.

[Kimberly]

in reply to: Radioactive Iodine Uptake Scan Result Interpretation #1066520

Hello – Sorry I can’t give you a quick answer, but you will want to go over the results with your doctor. In general, each lab has its own range of "normal", depending on when the scan was done (ex. 6 vs. 24 hours after taking the initial dose). Results above the lab’s "normal" range are indicative of hyperthyroidism. Also, interpreting the results is not just dependent on the % of uptake, but also whether or not the iodine was spread out evenly throughout your thyroid. If the uptake was concentrated in a small place, this could indicate that an overactive nodule is responsible for causing the hyperthyroidism.

Are you also having antibody tests done, such as TSI (thyroid stimulating immunoglobulin) or TRab (thyrotropin receptor autoantibodies)? These tests will also shed light on whether your hyperthyroidism is caused by Graves’.

Again, sorry I can’t give a specific answer…trust me, I *know* what the wait is like! I drove my doctor’s office nuts calling them for test results. Hopefully, you will get a definitive answer soon.

[Kimberly]

in reply to: Question #1066588

Deberic,

No need to apologize — welcome to the boards! Feel free to jump in on any topics that seem to be of interest…or start your own thread, if you have a particular question. This site has a wealth of information!

[Kimberly]

in reply to: Not going to do radiation or surgery…am I a minority? #1066555

Repost – Original Thread Titled "Help me sleep PLEASE!!"
by Ski on Sat Jun 06, 2009 8:21 pm
The sleeping issue is tough, but it’s worth figuring something out. We had a doctor speak with us at one conference about sleep issues, and he said that it’s important to solve this before it becomes "chronic," because then it turns into something mental as well as physical, and it’s harder to correct.

There are a few things that may help. First, remember that laying still, relaxing your body, is nearly as good for you as full-on sleep, so pursue whatever you can accomplish successfully, and try not to be frustrated when sleep doesn’t come as easily or last as long as you are used to. Your body is chemically imbalanced right now, so there’s only so much you can do to overcome that until the meds (or whatever treatment you choose) take effect. Do the usual things ~ avoid alcohol and caffeine in the later part of the day, take a long, hot bath or shower shortly before you plan to go to bed, go into a dark, quiet room and lay down. No TV ~ it’s bright, the images change often, it’s rather "exciting" to the brain ~ but reading is okay, if it helps you. If it creates one more distraction from rest, skip that too. If you haven’t been able to sleep for very many hours at a time, you may want to go ahead and let yourself stay up a little later than a "typical" day, so that when you DO go to sleep, you’re likely to sleep all the way until your alarm goes off. I think some of the hardest times are after we wake up in the middle of the night and can’t get back to sleep.

In any event, if you find yourself laying there and being frustrated and your mind running a hundred miles an hour, get up again, move to another room, turn on some lights and do something else. Choose to read a magazine or get something done that won’t take too much physical energy to do. Then try again.

If it’s at all possible, look into daytime naps to "make up" for sleep you lost the night before. I’ve read several sleep studies, and they all came up with different answers ~ one said it’s impossible to make up sleep, another said it’s essential ~ so feel this out for yourself. If a nap one day means you sleep even worse that night, well, that’s the answer for you. If it helps you function during the day and doesn’t affect your ability to sleep the next night, again, there’s your answer.

It’ll get better as you proceed through treatment, I promise Hang in. We’ve all come through to the other side, and you will too.

[Kimberly]

in reply to: Not going to do radiation or surgery…am I a minority? #1066554

audrey wrote: Oh dear! My problem isn’t going to bed early enough, it’s staying asleep! What do you do combat the insomnia?

Hi Audrey – This is going to sound odd, but stay with me. ” title=”Very Happy” /> If you click in the white "Search" box at the top of this page (just under Graves’ Disease Foundation – Online Support Bulletin Board), you can search for posts by keyword. Type in "Ovaltine" — but without the quotes — and then click the gray Search box.

Not that Ovaltine is the solution to your sleep issues — but this will isolate two older threads that included some great advice on sleep issues. If you had used the keyword "sleep" instead, it would have pulled up a ton of threads.

Ski is very well-versed on sleep issues, so if she will forgive my plagiarism, I will cut and paste one of her responses below. ” title=”Very Happy” />

[Kimberly]

in reply to: Not going to do radiation or surgery…am I a minority? #1066552

audrey wrote: Whoops! Yes, it definitely was my T4 that was high. I’m still new to this so all the terms are very confusing as I’m sure you all are aware. Thank you for the encouragement.

No worries! It takes a while to get all the jargon down. ” title=”Very Happy” /> Especially since it seems counter-intuitive that if TSH is *low*, then our thyroid levels are usually *high*. But TSH is the hormone that signals to the body that it needs *more* thyroid hormone. So if it’s high, that means the body doesn’t have *enough* thyroid hormone and needs to make more. If it’s low, that means the body has more thyroid hormone that it needs…so production needs to be shut down.

Good for you for changing your lifestyle to support optimal health! I ate pretty healthy before my diagnosis, but I have since gone even further in reducing processed foods and checking ingredients on the processed foods I do buy. I’ve also found that getting adequate sleep is important in the healing process. My old 5-7 hours per night just wasn’t cutting it!

Best of luck!

[Author]

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