I have Addison's which is basically the same deal. Run to an endocronologist (slaughtered the spelling). They will take blood readings for a while and adjust your cortisol intake accordingly. It took about a year for us to get in the right situation. This time of year we do more meds and less during winter as measured by activity.

Any trauma, physical or other, requires immediate medication so you should wear a medical alert. In case of even dental surgery, advise your doctor of this condition PRIOR to work. I give my doctor my month training in advance as a medication guideline and we check often. In the meantime, I've learned to deal with subtle variations and now know how to self adjust within limits.

Be prepared for some bone crushing fatigue. I was very concerned about the weight gain and other issues but you eventually get the right match. It won't be a picnic.

If you want to discuss further, send a PM. Good luck.

B

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"the only normal people are the ones you don't know"

Thanks B for your reply. I have been seeing a couple of endocrinologists for the last 3 years but they have had a hard time getting my illness under control. Part of that is because I take all the hormones and when one is out-of-whack it affects the others.

Add to that my rapid weight loss and it is really a moving target! BTW -- I do wear a Road ID bracelet and carry extra Cortef with me.

I'm curious as to how much medication you take and how much you adjust it for your training and events. I'll PM you for the details.

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Jim

My mother had Addison's....I've never met another person with the same syndrome and now I've met two. Unfortunately she passed away in 1978 before much was known about it and before advanced CAT scans and MRIs. She became ill with the flu while on a trip and everything spiraled out of control from that point, the person she was with couldn't get her to the hospital in time, no one knew to give her adrenal injection, basically a lot of freak things happened in sequence.

My husband has Fibromyalgia which means messed up hormones. He takes a daily dose of Cortef which helps his adrenal function, in addition to several other hormone replacements. He is applying a very low dose testerone cream which is helping with his lean tissue growth. Believe me he would have won the Skinniest Slowtwitcher contest but I didn't feel it appropiate to enter him given his lean frame is because of fragile health. Anyway, he is tolerating the testerone cream much better than the injections. The injections were terrible....severe mood swings, acne, etc. I already had two teenaged sons at home, and didn't need a third. He also is on a low-med dose of synthroid, and gives himself a B-12 injection every week.

Watch your bone density. Ask your doctor to order a bone density test now to use as a baseline. Bone density changes very slowly so follow up scans only need to be done annually at the very least, every two years is normal. My husband's bone density is equivilant to a 80 year old = osteoporosis. He broke his arm last December when he fell and I was thankfull that that was all that broke. A pelvic or femur break would be devastating.

I know this has been lengthy but I've lived with it for years and know more than some doctors we've met and would hate to see someone go through the ordeals my husband has gone through. Like HeyB, I'm happy to discuss further by PM or regular email. Keep exercising.

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______________________________
Have you hugged Your Mom today?

Football mom - Sorry for the delayed reply. I haven't been on the forum for several days. Sorry about your Mom. It does underscore how careful one needs to be with this condition. I carry extra Cortef on the bike and wear my RoadID bracelet but I suppose I also need to get an emergency injection kit to keep with me.

My condition is a little different in that my adrenal glands work fine - it's just that my pituitary gland is not signaling them to produce any cortisol. I also take testosterone, thyroid nd growth hormone medications.

I'm really excited to finally be back on the bike after all these years but trying to manage my cortisol levels with the right dosage and right timing of Cortef is proving to be a bear. So I'm looking for any help I can get on how to mix endurance exercise with this condition.

Thanks again,

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Jim

Mine is opposite...WAY to high...welcome to Team Neuro.




My high Cortisol is due to some tumor issues that I try more often than not to just pretend are not real. One thing about high cortisol that you did not mention is the skeletal issues of high cortisol somehow preventing your bones from absorbing calcium, healing, or maintaining strenght (according to my rhumotoligist - spelling is wrong I am sure). I am just over 30, and have pretty severe opsteoporosis...neat. This may sound bad...but at least with low Cortisol you can get meds and raise it...with high...nothing they can do to correct it.

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What if the Hokey Pokey is what it is all about?

[reply]Hi gang!

I have a hormonal disorder (pituitary failure) and thus my body no longer produces hormones. My treatment requires me to take testosterone, thyroid, cortisol and growth hormone medications.

I'm finally getting back into endurance training but have been told by some doctors that I may have problems with adrenal exhaustion since my adrenal glands don't produce cortisol and normally extra cortisol is secreted during endurance exercise.

I'm up to 50-miles on my training rides and have experienced some signs of adrenal exhaustion. I have started experimenting taking extra cortisol medication before and during my rides but I haven't been able to find any info on how much to take. My doctor actually has no idea what to do so I guess I'm on my own here.

The problem is that too little cortisol leads to a day or 2 of exhaustion and can be even be life-threatening if it goes too far. But too much cortisol causes weight gain, high blood pressure and sleep problems.

Just hoping somebody has some info or can direct me to someone who does. This is the most important part of my illness to address if I'm going to expand on my endurance training.

Thanks![/reply]

You and almost everyone else who has conditions such as this should be able to race under the disabled heading (you look normal but you ain't) plus you might contact the national support group for these conditions regarding some support.

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Frank,
An original Ironman and the Inventor of PowerCranks

I suppose removing the tumor might be an option. I'm sure you have also experienced sleep issues and the other effects of high cortisol.

I'm also at risk for osteoporosis because I take hormone medications but it seems like my weight training is providing some good preventative help so far.

You're right. If I can just get the right dosages set up my condition should at least be manageable. And frankly, I'm pretty darn grateful just to be able to exercise. A lot of people are not so lucky...

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Jim

Wow! I've never heard of the disabled category. Can you give me more info on that?

And boy did you touch a nerve with the "You look normal but you ain't" phrase! That has been one of the most difficult parts of this 'journey' is to have so many people imply that it's all in your head when you're struggling just to get up off the couch...

Part of my motivation is to show others with similar disorders that you can lose the weight and even be an athlete. Certainly not easy - but it is doable...

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Jim

[reply]Wow! I've never heard of the disabled category. Can you give me more info on that?

And boy did you touch a nerve with the "You look normal but you ain't" phrase! That has been one of the most difficult parts of this 'journey' is to have so many people imply that it's all in your head when you're struggling just to get up off the couch...

Part of my motivation is to show others with similar disorders that you can lose the weight and even be an athlete. Certainly not easy - but it is doable...[/reply]

Most races have a disabled category. Check with the race director. This stuff is right up the WTC's alley looking for human interest stuff for the Kona TV broadcast. That should get you off the couch!!! Your national support organization (every disease has one or 10) can help them to understand what the disability is about and why this is a big thing and they should be glad to help if it gets them and you the air time. Good luck.

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Frank,
An original Ironman and the Inventor of PowerCranks

Thanks Frank!

Since pituitary failure is so rare the only organization I have found is the Pituitary Network Association. I haven't seen anything on their website about athletes. It almost seems eerie because I haven't found anyone else yet who has pituitary failure and is an athlete.

Currently, I'm not planning on doing triathlons. My main focus is the bike and weight training. Once I get my weight down, I'll try running again and see how it goes.

I know if I only focus on time-trials I'll have far fewer events to choose from but that is where my passion is right now.

BTW -- I've kind of kept this illness 'journey' to myself but I'm learning that there others out there who need to see someone make a comeback from a hormonal disorder. I have talked to several people who had given up on losing weight because of thyroid problems and decided to give it one more try because of my success... That's a big motivator for me!!!

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Jim

[reply]Thanks Frank!

Since pituitary failure is so rare the only organization I have found is the Pituitary Network Association. I haven't seen anything on their website about athletes. It almost seems eerie because I haven't found anyone else yet who has pituitary failure and is an athlete.

Currently, I'm not planning on doing triathlons. My main focus is the bike and weight training. Once I get my weight down, I'll try running again and see how it goes.

I know if I only focus on time-trials I'll have far fewer events to choose from but that is where my passion is right now.

BTW -- I've kind of kept this illness 'journey' to myself but I'm learning that there others out there who need to see someone make a comeback from a hormonal disorder. I have talked to several people who had given up on losing weight because of thyroid problems and decided to give it one more try because of my success... That's a big motivator for me!!![/reply]

You might try the Lance Armstrong foundation since your passion right now is biking. Even though it is not cancer the effects are about as devastating and because it is so rare they might offer some kind of support network that you can glob onto. I would talk with the PNA also as somebody like yourself can be useful to bring them need publicity.

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Frank,
An original Ironman and the Inventor of PowerCranks

Great idea! I'll contact LAF and PNA and see what kind of response I get...

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Jim

[reply]Great idea! I'll contact LAF and PNA and see what kind of response I get...[/reply]

One more thing. Talk to your doctor. He might know of a reasearcher interested in following your progress. Something might be learned that can be useful to other sufferers. The PNA might know of someone like this also.

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Frank,
An original Ironman and the Inventor of PowerCranks

[reply]Great idea! I'll contact LAF and PNA and see what kind of response I get...[/reply]

Jim, I was watching the Nightline thing on Sara Reinertson today and got another idea for you. Check with the Challenged Athletes Foundation. I am sure they would be a great resource for you.

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Frank,
An original Ironman and the Inventor of PowerCranks

Frank - The PNA want me to begin writing a monthly article chronicling my 10-year journey through chronic illness...

Thanks again for the idea and your encouragement. Maybe I can inspire others to hang on and give them hope that they too can make it through the storm...

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Jim

[reply]Frank - The PNA want me to begin writing a monthly article chronicling my 10-year journey through chronic illness...

Thanks again for the idea and your encouragement. Maybe I can inspire others to hang on and give them hope that they too can make it through the storm...[/reply]

Soon you will be able to add your name and number to the thread abot "How many people you have insprired".

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Frank,
An original Ironman and the Inventor of PowerCranks

I certainly hope so! It would help make it seem like all those years off the bike were not wasted after all...

Actually, several people with thyroid disease that I've met over the internet have told me that I inspired them to try again to regain their fitness.

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Jim