I lurk on the Yahoo Addison's board and read this quote from Frances Segerson's ex-boss (Fran gave me permission to use this little beauty),
When I was first diagnosed with AD, my boss (a woman) said "So you have a condition that makes you have a tan and lose weight. And you want to fix this?
Classic! Skinny and tan in a casket is definitely a good way to go...NOT!
No one has ever suggested I try to get off steroids but I know some of you have had people make uneducated suggestions about how to permanently get off steroids with herbal supplements. Has this happened to you??
My new Endo says a total replacement dose for AD is 12 mg HC ! And I have to fast 24 hours to have another Stim Test! Sounds like a picked a dude here !!
ReplyDeleteThe most hurtful comment came to me from my grown daughter who recently moved across country. I told her that I wasn't sure that I would be able to visit her very often because it takes me forever to adjust to the time difference. Her response was something like, "Oh, Mom, you conveniently use Addison's as a crutch. You keep letting it dictate to you. You could make the trip without a problem if you set your mind to it. You choose to let it be a problem." This made me realize that she thinks I am exaggerating my "bad days."
ReplyDeleteDoes anyone else have this problem? Since I hate flying, I'm sure that I use up a lot of adrenalin during flight. I'm a white fister. Then, on top of that, my endo tells me to keep my medicine and sleep patterns consistent with my home time zone. That's almost impossible to do with a 3-hour time difference. By the time I get home from my trip, I'm a mess and can't get back to work. How do you adjust to the different time zones and the different stresses of flying?
Anonymous,
ReplyDeleteYour doctor has an interesting perspective. Most normal people produce somewhere between 10 and 12 mg of HC but they don't have to process it through their stomach and liver...I would suspect that 12 mg of HC would be significantly less after that process. Best of luck to you on the Stim test and 24 hours without HC! Take it easy and be kind to yourself!
:) Dusty
Debbie,
ReplyDeleteTravel is hard on me too. Sorry your daughter doesn't understand.
I think when we keep a facade of getting through the day, work, life, people don't understand that we can function (sometimes) and other times feel like complete, non-functioning shit.
When I travel, I take my meds in the morning when I get up as usual. I adjust to the time zone accordingly. If there's an addition of time, I add an extra 5 mg HC to compensate for a 27 hour day. The following day I take meds on the new time zone schedule.
Travel is super hard for me. I live in the middle of nowhere and it often takes 12 - 16 hours to get anywhere. Most of my relatives wouldn't consider coming here because it's so far out of the way, expensive and time consuming to get to. However, they think I'm just going to blow thousands of dollars and many days of my life to visit them. I don't travel well so the days following a trip are often a loss. I understand how you feel!
Dusty,
ReplyDeleteI don't get it. . . how do you run 50 miles? Most days I can't walk 1 mile. Other than the usual training, do you do anything special from an Addison's perspective? I don't really understand how adrenalin works. If we were to lie around for a few days, can we store additional adrenalin for a future event like running 50 miles? Do you know if it can work like that?
Debbie, from my understanding adrenaline is processed from the inner adrenal cortex, and it is the outer cortex which is destroyed in primary Addisonians, so if you are primary and not secondary your adrenalin should function as normal.
ReplyDeleteI'm not up to running ultras yet (I'm training for my first marathon), but I'm one of those lucky Addisonians. We do exist! I take 15mg of Hydrocortisone a day. I metabolise my meds very slowly. I will add an extra 5mg or so if I'm going to be running for more than two hours or cycling for more than four. I'm in no way typical though from what I've read.
As for stupid things people have said, the natural healer who persisted in telling me that my muscle aches were caused by my Hydrocortisone, which was killing me, was right up there. Being diagnosed with Pernicious Anaemia, funnily enough, helped solve that issue! She also gave me the name of a healer who could make my withered adrenal glands spontaneously recover. I didn't follow up that lead! It still scares me that vulnerable people are exposed to that kind of message, or alternatively, believe that herbal remedies can replace genuine corticosteroidal medication. Although I'm healthily sceptical when it comes to drug companies, there are times when convential medical protocols really are necessary.
Debbie,
ReplyDeleteCheck out this blog post: http://addisonssupport.blogspot.com/2008/04/addisons-consistency-is-path-to-feeling.html
Learn as much about Addison's as you can. Read this chapter from Cecil's Medical Text book: http://www.goodhormonehealth.com/adrenal-cecils.pdf
I don't have any adrenalin problems. I don't produce cortisol and, yes, I think but don't have any documentation that cortisol can be "stockpiled" to some extent.
We all have to start somewhere. Running 50 miles was not something I did suddenly. I was moderately active for a few years after diagnosis with my love of mountain biking. I started lifting weights in 2004, did a half marathon (and that first training run was mostly a walk that left me barely able to move after only 2 miles) and progressed slowly and steadily from there.
It's important for you to be sure your hormones are being properly replaced. If you've been castrated (ovaries removed), you need to replace certain hormones. Have you been tested for other conditions that are common when you have Addison's? Pernicious anemia, celiac, hyperparathyroidism, diabetes, hypothyroidism. Are you taking the right meds at the right times?
Until all of these things have been ruled out or in and treated properly, you have to go easy on yourself!
Unfortunately, you will need to be your own advocate. Most doctors know very little about Addison's and they fake what they do know. Hell, they don't have to live in your body!
My mother repeatedly says "Why don't you just stop taking those steroids so you can lose the weight?" My mom and dad think that being overweight is the worst sin in the world. They have hardly been sick. They think that you get sick, go to a doctor, they give you medicine and then you get better. They can't comprehend having to take a med the rest of your life, and especially if it makes you gain weight!! When I first got sick my hubby thought it was all in my head until the stim test came back with no stim. He's understands it all now and is a good advocate for me but it took him a while to "get it".
ReplyDeleteShelley
Thank you for your comments. I really appreciate it. Pip, I understood Addison's as an adrenalin problem, but you and Dusty say that it is really a cortisol problem (I have Primary). So, I'm going to have to study more. Thanks, Dusty, for the websites. I'll study them. Right now I take 20mg HC at 7AM with .2 Fludrocort. Then at 8AM I take 25mg DHEA (because Dr. said DHEA is naturally produced in the body between 7-10AM). Then at noon I take another 5mg HC.
ReplyDeleteI read that the normal body produces 20mg cortisone per day. I thought the cortisone helped the body manufacture adrenalin. Initially, when I was diagnosed, I rec'd adrenalin injections every day (ACE). That went on for about 2 years and I never got better.
Debbie,
ReplyDeleteYou might want to check out the Optimal Dosing of Hydrocortisone journal abstract. You might feel better spreading your HC AND DHEA. Here's something I would try if I were you: 15 mg HC, florinef and 12.5 mg DHEA 30 minutes before getting out of bed (set 2 alarms!), 15 HC & 12.5 DHEA around 11 or 12, 5 mg HC at 3 - 5 pm.
Is your blood pressure high? .2 florinef is a lot. If your blood pressure is high, you might want to get your renin and electrolytes tested to see if the florinef is the right amount for you.
When our body produces cortisol, it goes right into our bloodstream. When we ingest it, it has to go through the digestive process and, I could be wrong about this, through the liver too. These processes result in a loss of HC. I've got a good journal article about this, if you're interested in it, email me and I'll find it for you.
:) Dusty
Thanks, Dusty. I'll Email you.
ReplyDelete