[Kimberly]

in reply to: Thyroid Hair #1065719

Hi Joy – I have given up both hair color and make-up, but this was because of a personal decision that I wanted to limit my exposure to chemicals as much as possible. I don’t have any evidence, though, that this has any effect on the course of our Graves’ Disease.

I have more and more gray showing, but I don’t think it’s affected the texture of my hair. And the good news is that I have a few hundred extra dollars in my pocket every year from all the money I was spending on hair color and make-up. ” title=”Very Happy” />

And I wear my contacts VERY infrequently now, mostly due to dryness. I’ve actually had one pop out while I was driving…NOT fun!

[Kimberly]

in reply to: Iodine and no thryoid #1065762

mamabear wrote: So should I be using iodized salt since I do have my thyroid even though I’m in remission?

I’ve heard theories that EXCESSIVE iodine intake may possibly be linked with Graves’. Since you’ve been doing well all these years, I wouldn’t expect an occasional sprinkle of iodized salt to be an issue. This is mostly a concern when we are still hypERthyroid, as consuming excess iodine is somewhat like throwing gasoline on a raging fire.

[Kimberly]

in reply to: Why arent their ever any resources in my area? #1065746

Hello – We are slowly starting to see more and more support groups around the country. I attended the GDF’s Leadership Training Session in Brevard, NC in February and will be starting up a support group in Phoenix, AZ. The other attendees either have groups or will be starting groups in Salt Lake City, UT, Atlanta, GA, Raleigh-Duram, NC and Asheville, NC. There are a LOT of logistical issues to tackle in terms of setting up a support group, so the process tends to unfold slowly. Once you start feeling good again, perhaps you might want to explore setting up a support group in your own area to help other patients! In the meantime, as Bobbi said, online support groups are the next best substitute. This is a great forum to have questions answered, get advice, or just plain old vent when you need to! ” title=”Very Happy” />

The convention moves around from location to location each year to provide "equal opportunity" to all attendees. This year it will be in San Diego, so perhaps you can start saving now and keeping an eye on air fares. I have been to the last two conferences, and the GDF usually manages to snag a really nice rate on the hotel rooms. I would definitely enourage you to attend…you do get a lot of great info from the presentations, but it’s an especially uplifting and empowering experience to meet fellow patients in person!

[Kimberly]

in reply to: Newly Diagnosed GD — Sad and Scared #1065851

Hello – I understand your concerns, as I lost 26 pounds on Weight Watchers about 3 years before being diagnosed with Graves’. I was one of those who did NOT lose weight while hypER. After 2.5 years on methimazole, I am still struggling with being above my goal weight – at my highest point, I was about 14 pounds over my goal weight, but now it’s down to 7.

I worked so hard to lose the weight the first time around that I’d be lying if I said I wasn’t frustrated. I am. HOWEVER, remaining in a hyperthyroid state is an *immediate* danger to your health and needs to be corrected. Otherwise, this can cause complications such as bone/muscle wasting and heart problems – and occasionally thyroid storm, which can be fatal. Although we can’t “see” bone loss, if it occurs, this can have a huge impact on your quality of life. My grandmother had major osteoporosis, and all she had to do was step down funny, and she would end up in bed for weeks at a time recovering from a fracture. That’s definitely *not* the quality of life that you want!

Bobbi’s suggestion to track your food intake is a good one. Don’t forget to include *all* BLTs! (Bites, Licks, and Tastes). Also, here are a few suggestions from a nutritionist who presented at last year’s GDF conference:

1. Include breakfast daily within 2 hours of waking up.
2. Don’t go longer than 5 hours in between meals
3. Select “high volume” and “high fiber” foods such as fruits, veggies, and whole grains
4. Limit servings of healthy fats to 1 per day
5. Prioritize at LEAST 7 hours of sleep a night
6. (Note: Don’t start this last one until AFTER your hyperthyroidism is under control and you get your doctor’s OK) Do 150 minutes per week of physical activity, plus strength training 2 times per week.

I hope that this is helpful. Feel free to post here if you need to vent about weight issues…there are plenty of us who can relate! But the immediate priority is to protect your long-term health and quality of life by treating your hyperthyroidism.

[Kimberly]

in reply to: Graves neurology #1065844

Hello – I would definitely review your TSI results with an endocrinologist, as the "normal" range is somewhat misleading for this test. My understanding is that positive TSI *is* indicative of thyroid autoimmunity. (i.e. our own immune system’s antibodies are mistakenly attacking the thyroid). Exceeding the "normal" threshold means that your Graves’ autoantibodies are causing enough stimulation to make you hypERthyroid. Being below the "normal" threshold means that you still have some level of thyroid autoimmunity, but the antibodies are not causing enough stimulation to make you hypER. A truly "normal" person (i.e. with completely normal immune systems) would not show a positive result at all. (By the way, the folks that invented the TSI test generously sponsored our GDF conference last year, so maybe someone else here can jump in with better information!)

Unfortunately, the process of treating autoimmune patients is pretty fragmented according to which part of the body is under attack. Graves’ patients can end up with one doc for the thyroid…one for the skin…and one for the eyes. And then if you have a second autoimmune condition, you end up with a doctor for the kidneys, liver, etc., etc.. Hopefully, you can find a caring endocrinologist or primary care physician who will work with you to get to the bottom of your symptoms — and who can refer you to another specialist as needed.

Best of luck!

Best of luck!

[Kimberly]

in reply to: Am I Not Doing Enought For My Graves? #1065951

ddetrolio wrote:Just what kind could I experience or look for?

Hi Dave – In general, uncontrolled hypERthyroidism can cause abnormal heart rhythms, high blood pressure, chest pain, and ultimately, heart failure. While I don’t have any specific information on whether a *slightly* hypERthyroid state can cause these issues, this would be a good topic to bring up with your doctor.

[Kimberly]

in reply to: Average Recovery Time? #1065887

Hi Joy – Again, everyone is different, but I was able to do a leisurely 3-mile walk at about the 10-week mark. My Graves’ was caught in a routine checkup, so the process might take longer if you have been hypER for a while. I don’t have kids or grandkids, so I can’t compare notes with you on that aspect! ” title=”Very Happy” />

Once you get the hypERthyroidism in check, you should start to see improvements. Sometimes it’s a two-steps-forward-one-step-back kind of journey, but you WILL return to good health!

[Kimberly]

in reply to: Average Recovery Time? #1065885

Hi Joy – Everyone’s journey is a little bit different. If you can give us your definition of "normal", then maybe others can chime in with their own experiences. Is "normal" for you getting through the work day without needing a nap — or is it running marathons?

I am on Anti-Thyroid Drugs, and it took me about 10 weeks to arrive at the "getting through the workday" stage. I think I could have gotten to this point a lot sooner if my doctor had made my initial dosing decisions based on Free T3 and Free T4, rather than TSH. (In Graves’ patients, TSH can take quite a while to get back to the "normal" range, so it’s not a good benchmark for determining ATD dosing).

I’m 2 1/2 years into treatment, and I’m pretty active now — I regularly engage in walking, kickboxing, tennis, and strength training. I would like to play competitive tennis again (singles), but I’m not quite ready to go three full sets. Part of this is that I’ve been increasing my activity sloooooooowly…and part of it is probably the fact that I’m just not as young as I used to be. ” title=”Very Happy” />

[Kimberly]

in reply to: Newly diagnosed–help! #1065892

Hi Joy – Welcome to the boards! I’m glad that you found us, although I’m sorry to hear about your diagnosis.

I think that everyone’s experience is a little different. My general practitioner identified my low TSH during a routine checkup, and referred me to an endo who actually did further testing and made the diagnosis. At first, it was going to take two months to see an endo…but I got my GP’s office to intervene on my behalf, and they cut the wait time down to a month. (The squeaky wheel gets the grease!) Once you do get a referral, you can also call the endo’s office directly and ask them to let you know if they have any cancellations.

I don’t know how much you already know from your mom’s experience with Graves’ Disease. In short, GD is an autoimmune condition where the body’s own immune system mistakenly attacks healthy tissue. In Graves’, the targets are the thyroid and the muscles behind the eyes, and occasionally the skin, particularly in the shin area.

While there is no cure, the various treatment options focus on getting the hyperthyroidism under control. Otherwise, this can cause complications such as bone/muscle wasting and heart problems – and occasionally thyroid storm. There are three different options to get the hyperthyroidism under control. One option is Anti-Thyroid Drugs (methimazole, tapazole, PTU), which block the production of extra thyroid hormone. The other options are to destroy the thyroid by taking a pill with radioactive iodine (RAI) or to surgically remove the thyroid. All three treatment options have pros and cons, so you will definitely want to do some research and discuss this with your endocrinologist before committing to a decision.

As for the eye issues, while some patients do experience a sudden onset, it’s actually more common for the symptoms to come on gradually. So you wouldn’t necessarily notice them from day to day. Also, while it’s common for patients to have *some* eye involvement, the symptoms tend to be mild in most cases. My thyroid levels are generally stable, although I’ve had a couple of hypER blips – both associated with periods of major stress. So it’s best if you can find a way to take one day at a time, and try not to stress about whether you might have eye complications. (I know – easier said than done!)

This board is a great resource – feel free to ask questions or jump in on any of the other topics!

[Kimberly]

in reply to: Am I Not Doing Enought For My Graves? #1065948

Mcweis wrote: Where can I find an endo that really knows all about Graves???? Sometimes I feel like I know more than they do!!!!!!

Hello – Welcome to the boards! We don’t recommend specific docs on this site, but you can search for docs on http://www.thyroid.org or http://www.aace.com (American Association of Clinical Endocrinologists). On the AACE site, you can specifically request a doctor who specializes in thyroid disorders. Since many endos primarily see diabetes patients, these sites can help connect you with a doctor who is more familiar with thyroid issues.

Also, a quick note on hypERthyroidism and replacement hormone. One issue with taking too much thyroid hormone and keeping the body in the hypER range is an increased risk of bone loss and development of osteoporosis. It would be good to have a discussion with your doctor on this issue.

Best of luck!

[Kimberly]

in reply to: burning calories??? #1065915

kristenb wrote:If you are on thyroid hormone- are you able to exercise, and increase your metabolism to help lose weight? I feel like this may be a problem because you are given a prescription dose of hormone..

Oops, looks like our 2 e-mails crossed in cyberspace. I wasn’t sure if you were asking if you are "allowed" to exercise — or if the exercise will impact your metabolism if you are on replacement hormone. If you are asking if we are "allowed" to exercise, the limitation on exercise only applies when we are in a hypER state. So those who are on replacement hormone, but have tested in the "normal" range CAN exercise. Although when starting any type of exercise program, it’s a good idea to check with your doctor first to see if he/she has any concerns.

If you are asking if exercise can help increase calorie burn for those who are on replacement hormone, yes it can. About 30% of our total calorie expenditure for the day comes from physical activity, so any increase in physical activity can help burn extra calories. Exercise can also help re-build some of that lean muscle mass that we lost while hypER…which can give our metabolism an *extra* boost. However, while our bodies are still trying to heal from the effects of being hypERthyroid, I would recommend starting slooooow with any activity, and then gradually increase the time and/or intensity of your workout.

If you are interested in finding out your own Resting Metabolic Rate (the amount of calories your body burns at rest), a nutritionist can can help you find a facility that administers this test. The nutritionist who spoke at our conference said that her local YMCA provides this service to members (for an extra fee, of course).

[Kimberly]

in reply to: burning calories??? #1065913

kristenb wrote:Will I get my muscle back?? Even on ATD?

Can you boost your metabolism if you are taking a fixed thyroid hormone as well?

Hello – Yes, you *can* get that muscle mass back by doing some strength training (again, making sure it’s with your doctor’s blessing). It’s best to start with LIGHT weights, and then SLOWLY increase as doing the reps get easier and easier. You definitely don’t want to deal with a physical injury on top of your Graves’ disease!

There are a few things we can do to rev up our metabolism — here are a few suggestions from the nutritionist who spoke at last year’s conference:

* Prioritize at least 7 hours of sleep at night
* Eat breakfast daily w/in 2 hours of waking up
* Do NOT go longer than 5 hours between meals and/or snacks.
* Do 150 minutes of physical activity per week, plus strength training twice per week. (Again, for those who are still hypER, please check with your doctor before starting any exercise routine).

Under NO circumstances should we use diet pills, excessive caffeine, or alter our thyroid medication. Yes, weight is important to all of us — but our #1 priority is to protect our health by keeping our thyroid levels stabilized.

[Kimberly]

in reply to: burning calories??? #1065906

First, I want to mention that you should get a doctor’s clearance before engaging in any type of strength training exercises. When we are hypER, the body is actually tearing down muscle mass — and trying to do strength training or engaging in other intense exercise can make this *worse*, which will set back your healing process. It’s best to clear any type of activity with your doctor if your thyroid levels are still too high. Your #1 priority right now is to get your thyroid levels stabilized so your body can begin healing.

But, yes, metabolism is where the body converts food to energy. We had a nutritionist present at last year’s conference, and she said that the energy is used as follows: 60% for keeping the body going (breathing, pumping blood, etc.), 30% for physical activity, and 10% for digesting and absorbing food. When we are hypER, our metabolism goes into overdrive. The problem with this is that the body starts breaking down muscle (and even bone) mass to use for extra energy. This can be especially dangerous because the *heart* itself is a muscle. So the ATDs are designed to block production of extra thyroid hormone, which will bring your metabolism back down to a "normal" level.

Once your hypERthyroidism is under control, will your "new normal" metabolism be the same as your "old normal"? No one can say for sure, but from personal experience, mine is not. I’ve found that I need to eat less than I did *before* I went hyper in order to maintain my weight. Part of this could be that I lost muscle mass when I was hypER. Muscle is said to be more "metabolically active" than fat, as it burns calories even when at rest. So once your thyroid levels are stabilized, adding some strength training exercises can help boost your metabolism in a good way — and not in a damaging way.

[Kimberly]

in reply to: Am I Not Doing Enought For My Graves? #1065946

ddetrolio wrote:Are the reports easy to understand? I am an IT guy but I understand Windows (well most of it, Bill Gates needs to share) but can the reports be easy to follow?

The lab reports seem a bit overwhelming at first, but once you learn to zero in on the right information, they are pretty easy to follow. Pay special attention to any items that are flagged as being outside the normal range. I’m sure that various labs do it differently, but mine lists the "out of range" items in bold with either a "H" (too high) or "L" (too low). It’s also a good idea to compare labs from one visit to the next. For the items that are out of range, note whether they are getting closer to (or farther away from) the "normal" range and how quickly they are moving. Here are the items that I pay the most attention to:

Antibodies (TSI and TRab) – The antibodies have a fairly long life, so these are only tested every few months.
Free T3 and Free T4 (This is the amount of hormone that is available for the body to use; out of range HIGH indicates hypERthyroidism)
TSH – (TSH regulates the amount of thyroid hormone that our body should be producing; out of range LOW indicates hypERthyroidism, because our body doesn’t need a "prompt" to make extra thyroid hormone if we are already hypER)
CBC – Complete Blood Count; an out of range LOW can indicate a potential side effect from taking anti-thyroid drugs
CMP – Complete Metabolic Panel; I’m not as familiar with this one, although an out-of-range result can indicate potential liver issues.

Hope this makes things less confusing…not MORE confusing!

[Kimberly]

in reply to: My TSH will not go down #1065932

markwagner wrote: I am told that the sooner I get regulated the sooner I will get in the "cold phase" and my eyes should get better! Any Suggestions? Should I increase my levothyroxine?

Hello – As Ski said, TED runs on its own schedule, and there really isn’t anything we can do to make the cold phase arrive more quickly. However, I picked up a book on TED at last year’s conference, and the authors believe there is a link between hypOthyroidism following RAI and *increased* severity of TED. (Another theory is that this occurs because of an increase in autoantibody activity following RAI.)

However, the decision as to whether to increase your dose should be made in conjunction with your doctor, and based on recent labs. The "normal" range is fairly wide, so "normal" might not be OPTIMAL for you, if you are not feeling well. The catch is that if you end up *overmedicating* with the levothyroixine, you can end up back in hypER territory again, with all of the complications that go along with being hypER…including bone/muscle wasting and heart issues.

[Author]

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