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.

Sunday, February 21, 2010

Steroid guilt

There's a subset of people with Addison's Disease who are VERY hesitant to increase our steroids despite our body giving us clear signals that we need more steroids. I like to call this "Steroid guilt". I most certainly a sufferer of this STUPIDITY.

I think the more athletic Addisonian's tend to suffer the worst from this. We are used to putting our body through good pain and getting good results. We have conditioned ourselves to overlook the symptoms below, often until it's too late and we're really sick.

Those of us who suffer with steroid guilt will refuse to see these adrenal insufficiency symptoms as signs of needing to increase:
  • low blood pressure
  • nausea
  • vomiting
  • being cold to the bone and having a hard time warming up
  • heavy arms and legs
  • chills
  • diarrhea, especially bloody
  • inappropriate fatigue
  • extended injury
  • frequent colds
  • frequent trips to the ER
We will go on about our days complaining of a persistent stomach ache or being cold, giving no thought to increasing our steroids or blowing someone off who suggests it.

Why do we do this?

I think it's because it's been drilled into us that we
a) will get fat if we increase our steroids
b) will get osteoporosis
c) need to be on the lowest amount of steroids possible at all times
d) we've seen others pop HC like candy, who suffer from Cushingoid symptoms, take waaaaay too much HC way too often. We don't want to be like them.

We completely disrespect our body by ignoring the fact that if we had working adrenals and have any of the above symptoms, our body would make extra cortisol. We force our body to work harder and be under stress longer and not heal as well because we are stubborn and feel guilty. It's stupid. I have done this over and over. I am committing to treating my body much better and listening to it calling to me with the symptoms I listed above.

You know what can happen if we ignore our body's cry for steroids, we can end up with vomiting and have to go to the hospital to get IV fluids and IV steroids (and it costs a lot of money!), we can end up with the diagnosis of IBS because we're not giving our intestines what they need to work properly, we can end up with cold after cold that might turn into pneumonia

You that don't take enough meds, you know who you are!

Think twice about complaining about the persistent nausea! Try increasing your steroids for a day.

Don't keep wondering why your BP is so low for days on end, don't attribute it to something else, try increasing your steroids for a few days!

Hear me complaining about nausea, low bp, being tired, don't hesitate to tell me to increase my steroids.

You get the picture! If you DO increase your steroids, you can ALWAYS drop back down to normal levels immediately. If you increase your steroids and you show signs of over replacement, drop back down immediately. However, if you increase your steroids and your symptoms go away you know you've done the right thing and perhaps you're training yourself better for the future. You may be potentially avoiding a trip to the ER.

This is too long. I hope someone has read and heard and will listen.


trailrunner said...

Best of luck with your health...the photos in your blog are excellent..thanks for sharing.

Anonymous said...

This is so true Dusty - I certainly suffer from steroid guilt, and I totally agree with everything you just wrote....

Anonymous said...

Hi Dusty,
my name is sue in naples
i am an athletic addisonian primary with

thanks I needed that as usual

Linda said...

This is so true for me. For as long as Dusty has known me, I have constantly resisted upping my medication. I let comments by other Addisonian's throw me into "guilt"mode even though I work out harder than most people I know. I get angry and frustrated with my body and I get terrified thatI am going to put on a lot of weight (I know, this is irrational and stupid. I think that Dusty is right on here because the list of what happens is EXACTLY what happens with me. Thank you, my friend. Keep ringing the bell and educating us all!

Unknown said...

Trail Runner, thanks for the complements! Check back soon, I'm going to get my butt outside for the rest of the winter starting tomorrow!

Ashley, Sue and Linda, we're all in the same category. Thanks for being a part of my journey through Addison's and for inspiring me and keeping me on the right track and motivated even when I don't feel great.



KristenR said...

I am guilty as well. I decreased my dose by just 2.5 (feeling like I wanted to be at the lowest dose possible, thinking that I was gaining weight). The low level nausea returned and I ignored it. After a couple of weeks I increased my HC and am now back on my usual dose. What a difference even 2.5 can make. I too will start listening to my body. Thanks Dusty!

diane said...

i put on my google search bar addisons and fitness, sometimes i feel really lonely struggling with the disease. i love to ski, hike, bike, walk and yet always feel like i'm fighting my own body. i really hate/love my steriods and totally get the steriod guilt. wish we all could get together in a room to chat. thanks

Unknown said...

Kristen, good for you listening to your body! :) Dusty

Diane, come join us at at the forum. Lots of info and support.

:) Dusty

Pip said...

Eeek. And I hadn't even told you that my blood pressure was low (90 over 70) when my chiropractor friend measured it on Thursday. It's been trending low ever since the surgery ...

Unknown said...

This post was written because of you! Look down the list and see how many symptoms you have. Does your chiro know that low bp is a big symptom of AI? You're in denial of how much of a toll your vertigo and eye problems and their complications are taking on your body.



Mary Anne said...

I have endocrinologist induced steroid guilt! He tells me only to increase when I have a fever.

But this week I have been fighting dizziness and nagging nausea and the dreaded brain fog. Going to take some HC right now!

Anonymous said...

I have felt guilty about being sick on sick days, that I tend to ingore my body and just run muself into the ground, I resist increasing my medication convincing myself that I am just tired because of work, or the activities with the kids. Before I know it I have an out of control situation, now after 4 years, I am learning to embrace my illness, thanks..Dusty JoAnne Mosher

Anonymous said...

I decreased from 25 to 22.5 and felt AWFUL. My eyes were so red and irritated it was unbearable. Then I tried to go even lower because my doc wanted me to get down to 15 and started to go into crisis! I have gone back to 25 and feel human again. Now I have to get over the guilt of needing more to be ACTIVE.

Thanks for these wonderful blog posts!


Unknown said...

Thanks Joanne and Kathleen! :) Dusty

Unknown said...

I suffer from steroid guilt as well. Mine is because my endo, and everyone but my husband constantly tell me how bad they are. My first endo tried to get me to ween down to 15 mg. of hc and took me off florinef completely. But I could not get out of bed at that point, and was so dizzy, sick and in pain. My new endo is trying to find a baseline dose I can live at, but quality of life is not real important to him. I just found this site and this post totally described me. My husband said I'm 100% the person you described, and now that I know I will work on it, because I want to run and hike again:-).

Unknown said...


Thanks for reading!

Come join us at the forum

YOU should be the one finding your baseline, not your doctor. You have to live in your body, not him!

The risks of being on too low of a dose of hydrocortisone are great. The greatest being death! You are also a greater risk for osteoporosis, hypercalcemia, hypotension, and infections.

:) Dusty

Anonymous said...

Hi I am very active, take 30mg HC 20/5/5 and .5mg florinef each day. and still crash about once every other month. I am trying to get a feel for what dose most very active addisonians take. I would love some feedback here.


lynn said...

What about hypoglycemia and blood sugar swings - i.e. from high to low? If insulin and HBA1C are normal, are blood sugar swings caused by low cortisol?

I had an extremely stressful week last week and never stress dosed. My current week hasn't been stressful, but I have been suffering with reactive hypoglycemia since the stress ended.

In fact, reactive hypoglycemia seems to happen to me when I am generally stressed.

Any thoughts?

lynn said...

Oh and my BP isn't low or anything at the moment. It also rises normally when I stand up etc.

I amn't craving salt either.

Unknown said...


Cortisol helps regulate blood sugar. Why wouldn't you stress dose if you needed it?!

Come on over to the forum!


Anonymous said...

Dusty, I Just Love it...Think we should have 'Steroid Guilt' t-shirts made up. We can wear them when we feel crappy to remind us.....Hey my son is heading to Jackson and yellowstone tomorrow with some folks. I am soo excited for him to see the mts.

Unknown said...

Diane, you're funny. If I wore a "steroid guilt" Tshirt to a race, I'd probably get kicked out. I hope your son enjoyed the Greater Yellowstone area! he got some really nice weather!


JMC said...

It seems like a lot of Addison athletes are guilty of this; I certainly am, for all the reasons cited by others. One question; one suggestion:

Question: Has anyone noticed a clear link between brain fog and insufficient Florinef?

Suggestion: I've been taking DHEA (50 mg daily). I know the endos say we don't need it, even though we don't produce it and healthy people do (why do they start with the assumption that God/ nature screwed up rather than God/nature knows what we need?). My DHEA levels went from zero to normal and it seems to help.

Unknown said...


The only link I notice with brain fog and insufficient florinef is that my BP goes low and it makes me dumb when I have to focus all of my energy on not blacking out when I stand up and not flexing my feet, hands or neck too hard (so they don't cramp!).

I'm hoping you're a guy since you're taking 50 mg of DHEA. Often that's way too much for women.

Unfortunately DHEA doesn't help at all with my cortisol :( Mostly my skin and hair aren't as dry. It doesn't even convert to testo or estrogen for me.

The doctors that say we don't need DHEA must be incapable of reading! There are a few good studies that indicate that DHEA is beneficial for people with AI. Mayo has an excellent one.

Please come on over to the forum and ask questions if you want!

:) Dusty

JMC said...

Yes, male.I've had Addison's since the early 1980s, although it took three years and a full-blown Addisonian crisis to get properly diagnosed. I've always been very active -- marathons, centuries, etc. -- and for most of the last 30years the Addison's (also hypothyroid) was no more than an ocasional distraction. But as I age (and remain real active) it seems to get harder to manage, with long periods of brain fog, dead, heavy legs etc. Frustrating.

Addisons Disease Daily said...

I think I am getting hung up on steroid guilt for sure! My body has changed by about 17 pounds, so I think that is what is motivating this. However, I'll have a great day with lots of energy, do a bunch of fun things, and then crash the next day. By what amount would you suggest increasing? 5mgs at a time, or is that too little of an amount to make a difference.

Unknown said...


That's an awesome question for the forum. Come on over!

Let us know all the diseases you've been diagnosed with, diseases you're treating, diseases you've ruled out, your meds, times and doses. Then ask the questions you've asked here. We'll give you more answers than you probably will want!

:) Dusty