[Ski]

#1073378

The usual rule is that once your levels have returned to normal, and you’ve had some time to heal, exercise should be okay as long as you build back up slowly and take it easy, so I’m not sure where the "horror" comes from in your doctor’s eyes. I’d be interested to hear some clarification on why that is his opinion.

One other thing that’s a little odd is that you continue to take beta blockers, which are typically given only until your levels come into the normal range, to protect the heart and relieve the anxiety and tremors, but once levels are normal we are usually encouraged to wean off of them (it takes about a week, we don’t take much, but a "cold turkey" withdrawal can cause a "bounceback" of the symptoms you’ve been correcting). Again, I’d be curious to hear the rationale for continuing on beta blockers, months after you’ve achieved normal hormone levels.

Back to the exercise issue ~ you may want to ask your doctor for a referral to a physical therapist so you can get a concrete evaluation of your fitness right now, and also develop a plan for getting back to the exercise level you enjoy. LOTS of GD patients get back to their favorite forms of exercise. We had a speaker at a conference who climbed Everest after his successful treatment. It can certainly be done. It’s not the easiest thing you’ll ever undertake, but it sounds as if you are truly motivated, and I’m sure you’ll get there.

One more thing ~ if you continue to have pushback on this, there’s no harm in talking with another doctor for their opinion. You don’t want to hurt yourself, but that cuts both ways (in other words, you wouldn’t want to be "hurting" yourself by not getting back to the fitness level you had).

[Elle]

#1073379

Bless you, Ski, for your comments. You’ve confirmed what I’ve been thinking I should do for months—talk to my GP and get another opinion.

Once I was diagnosed with Graves, I immediately got into databases and researched as much as I could: levels, treatment, symptoms, etc, etc, etc, and upon first meeting, I don’t think that my endocrinologist appreciated that I was keenly interested in my health. After the diagnosis, I peppered him with questions about different options and treatments, and he bluntly stated that he had been doing this for 40 years and he knew what he was doing. As a type-A individual, and since this was the first major health issue I’d encountered, I’d bring a list of questions to ask him at every appointment, and on more than one occasion he told me I just needed to calm down. I wasn’t out of control by any stretch: just prepared, interested and wanted to have as much information as possible. Early on when I asked him if I could start running eventually, he refused to answer and again told me to relax. I also suspect there may be some cultural issues at work here—in his original context, women are traditionally submissive, obedient, and don’t question the authority of male figures. (I am almost hesitant to bring that up as I hate to think that that plays a part in his diagnosis and treatment options….)

At one point he did want to take me off of the beta-blocker as my levels were staring to even, but one of the questions on my list was “why am I still getting occasional palpitations or what feels like flutterings?” So he told me to stay on the beta blocker. At that time, I was under an insane amount of stress (which I couldn’t relieve very effectively since I couldn’t run) as I was working full time and completing a graduate degree. (My theory has always been that my Graves was kick-started due to my stressful and relentless schedule—symptoms started 2 months into my graduate work.)

On one hand, I sometimes joke that his keeping me on propanalol is his way of trying to change my temperament and teach me to be submissive! On the other hand, if he suspects underlying heart issues, why hasn’t he told me? I’ve been with him for a year and a half. Overall, I’m very, very thankful that this was caught and I have excellent health insurance and a variety of professionals at my disposal. I can only imagine the suffering of those in other areas of the world where help isn’t as readily available.

I’ll make an appointment with my GP and see what she suggests (stress test?) and will also try to get referred to a physical therapist or sports medicine specialist.

I’m very encouraged about Everest. ” title=”Smile” />

Thank you!! Elle

[Elle]

#1019678

Hi—I’m new here, and I’m so thankful to read all of these posts!

I was diagnosed with Graves on my 33rd birthday in November of 2008, but had been suffering from it (heart palpitations, extreme shakes, slightly bulging eyes, the feeling that I was losing my mind, etc) for probably 7 months prior.

Prior to Graves, I ran around 20 miles a week. The first clue that something was wrong when I went out for a quick 4 mile run and my legs were terribly weak. Long story short, my levels are now within normal range, and have been so since October 08, although I am still on a beta blocker and methamazole. (Both have worked very well.) I’ve gained 20 pounds through all of this, and haven’t done much more than the occasional walk.

When I ask my endocrinologist if I can begin to jog, he looks at me with horror and says no. He has allowed to me walk a *whopping* 5 miles a week. While I certainly am aware of potential heart complications (though I have to think that the excellent shape I was in prior to Graves helped with heart strength), I have moved from being frustrated to depressed because I have no idea, and can’t seem to find out from my endocrinologist, if I will ever be able to run again or will be able to build up muscle strength.

Are there any other runners out there with positive, hopeful, post-Graves running stories? I sure need to hear a few! Any athletes who have been able to return to their former glory post-Graves?

Or, conversely, anyone with serious heart problems as a result of Graves? If so, how do you manage those and what is your activity level?

Thanks so much for your feedback! Elle

[KMB]

#1073380

Dear Elle:
I was diagnosed with graves disease four years ago. The first thing the Dr. wanted to do was remove my thyroid. I studied up on the disease and opted for a treatment regimen. I started by taking PTU, but immediately had a violent reaction. I asked my Dr. to prescribe methmazole, and had been taking this drug until last Fall, when I went into complete remission. Throughout my treatment, I have been an active cyclist. I teach a cycle aerobics class about 4 times/week, and have done so since 2005 I never let up on any of my activities. I do a couple of triathlons a year. I am 55 years of age and my bone density scan revealed that I have the bones of a 20 year old, my HDL is low, low; my LDL is high; my pulse and heart rate are low; everything is good, and I believe that I am so fit because I never halted the exercise routine. I also thought that I had beat this Grave Disease thing, too. Low and behold the Graves revealed itself again with my last blood test; now I’m looking at options for complete removal. At times, I wish I had gone ahead and had the organ completely removed back in 2006, because I would not have been going through the highs and lows that I have been going through while on methmazole. Sometimes, my blood test would reveal that I am going hypo, and the Dr. would lower my dosage; then I would go through the quivers and shakes for awhile. My main barometer is my handwriting – when I can’t hold my hand still enough to write properly, then I know I’m in bad shape. Because I’m not at that stage right now, I question the reliability of what the Dr. has been telling me. I’m going in for a second opinion in another week. In any event, I do not believe that a Grave Disease diagnoses should indicate halting all of your regular activities. You were an active runner, prior to GD, you should be able to resume that regimen, unless there’s something really awry in your system. How are the rest of your body functions doing? I’m guessing that a complete physical will provide the information you and your doctor need in order to provide an effective plan. There’s lots of doctors out there, try another opinion.
Best.

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