Blog changes

Thanks to everyone who followed Training Because I Can! over the last nine years. This blog started with Addison's Disease, hypothyroidism and a crazy idea of doing an Ironman distance triathlon. My life has changed and so has this blog. I am using this blog strictly for Addison's Support topics from here on out. I hope to continue providing people with hints for living life well with adrenal insufficiency.

Wednesday, August 15, 2012

314 miles in 9 days and the meds that made it possible

When a person has adrenal insufficiency, they are unable to produce:  cortisol, aldosterone, DHEA, testosterone (women), progesterone (some women).  If you can't maintain a good blood sugar, blood pressure and muscle mass, you can't do much.  Sometimes, people die from lack of cortisol and aldosterone.

I replace all of these hormones and thyroid hormones.  Replacing hormones while on a long run is challenging.  Knowing how to replace them takes study of medical journals, understanding of human physiology and listening to other's experiences.  Next, there's a LOT of trial and error.  Years of it.

Most of my pills are round and white.  Quite annoying because they all look the same after they've been in a back pack for a week and have been jiggled around for 250+ miles.  Good thing I can tell some apart by taste or I'd be pretty screwed taking DHEA instead of hydrocortisone.

The first three days, I did what I've done in training runs:

  • 10 mg HC, .1 mcg florinef (I usually take .075 but splitting the pills that little was too much work), 12.5 mcg T3, 12.5 DHEA and probiotics
  • One hour into running, I took 5 mg HC and 2 salt supplements/hour, T3 at regular times (11 am and 2:30 pm),  6.25 DHEA at 11 am also
  • The last dose of T3 and DHEA were questionable because the pills crumbled up and I couldn't tell what they were for certain.
  • On the really rainy day, I only took one sodium supplement/hour
  • 100 mcg of T4
On the third day, I started having trouble with nausea, crying and inappropriate muscle soreness.  The third night a light bulb went off in my head, I was under replaced!  The fourth through ninth day, I took 10 mg of HC/hour for a total of 100 - 150 mg/day.  I needed it.  I did have some trouble sleeping but I do whenever I get a lot of exercise and also did on the first three nights when I was taking 50-75 mg of HC so I don't think it was the HC.

When I had my breakdowns on the road, it was almost always due to needing to eat and needing more HC.

I was very careful to stay hydrated.  On the hot days, I drank about two gallons of water.  No Gatorade.  I didn't want to drink hot Gatorade, it was just not appealing to me.  I had a few Icees.  One root beer and one gingerale.  Ice water was a treat.

If I had to do this all over again, I'd start out my adventure with 10 mg/hour of HC.  For any race under two days in duration, I'd stick to 5 mg/hour.

I was also careful to eat when I was hungry during and after the race.  When I finished my other multiday run, which was half the distance, I returned home feeling very hypothyroid.  After doing some research, I discovered that the body needs food post race to stay out of the hypothyroid state.  During my international travels immediately post race, I didn't eat much because I was too dumb to convert my money into Euros so I had no money to eat.  I bought a huge bar of chocolate and that's all I had for about 24 hours.  Gross.  I suffered when I returned home.  I took the eating thing to heart and have not felt hypo.  

If you've got any questions, please ask.  


Shannon said...

All the more amazing what you accomplished!!! I told you two- I was smack dab in the middle of two amazing women (you and Psyche- I couldn't not finish!)
Truly incredible!

Pip said...

I agree, what an amazing accomplishment! I also find that if I'm wanting to cry it usually means I need to take more medication or eat something. Usually eat something, but last Saturday I did have what I think was a low at the end of an unusually challenging run which had taken quite a bit longer than I'd expected. 10mg of Hydro and I was feeling much better after ten minutes or so.

Maryrose said...

Dusty-thanks for sharing your dosing in such detail. This is ENORMOUSLY helpful.
I have a question for you: what brand of DHEA do you take and where do you buy it?
I have a 14 y.o. daughter with AD and her endo won't prescribe DHEA because a pharmaceutical grade is not available in the U.S. He also falls into the camp that believes that more studies must be done to confirm the benefits of DHEA supplementation.

Unknown said...

Shannon, thanks so much. Girl you could have done it with or without us!!! You were amazing too!!!

Thanks Pip!

Maryrose, I use Schiff or Natrol DHEA. Compounding pharmacies can make a transdermal DHEA too (much more expensive!) Please make sure her FT3 is midrange and FT4 is 1.3ish before starting DHEA. Titrate up slowly to a max of 25 mg/day or less. Titration should take a month or more. For more info and other's experiences, come to the Addison's Support forum

:) Dusty

Unknown said...


I realize this is regarding diagnosis but it's interesting that it's common knowledge that DHEA is affected by AI and your doctor wants to keep your daughter from having normal levels of it. He's probably got normal levels of DHEA, why shouldn't your daughter?!