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.

Monday, July 20, 2015

Rant: The prescribing and adherence to low doses of cortisol

People who are diagnosed with adrenal insufficiency should be taking the lowest possible dose of hydrocortisone (HC) possible.  Fact.  What is the lowest possible dose?  It all depends upon your physiology, your diagnosed and undiagnosed comorbid conditions and the amounts of other hormones you are on.

How does your doctor determine how much HC you should be on?  Pathetically enough, he basically pulls a number out of his ass with no regard for your quality of life or clinical symptoms.  He likes to err on the side of a lower dose and very poor quality of life.  The generally recommended guidelines in medical literature are about 15-25 mg of HC per day without any regard to activity level, binding globulins, other hormones you are taking that affect cortisol metabolism or the other diseases you have.  

I know of very, very few people who can function well on 15 mg of hydrocortisone a day.  I know of only a few.  Some have decent quality of life.  Some do not but prefer to suffer from all of the symptoms of under replacment:  bronzing, nausea, vomiting, low bp, fatigue, hypoglycemia.  In addition, cortisol is needed for bone growth.  Not enough cortisol INCREASES your risk of osteoporosis so if you think you're doing yourself favors by suffering through the symptoms of under replacement to make your doctor happy, you are actually a martyr and a little suicidal.  

The average replacement dose is about 20 mg of HC per day.  The recommendation is based on nearly nothing.  There is no monitor for cortisol that's widely available to the public.  There are no guidelines for cortisol numbers based on the dose, patient's metabolism, comorbid conditions and time of the last dose.  The 20 mg of HC number was collected in a hospital setting on people who sat around all day getting blood drawn.  When's the last time you sat around all day, chatting, reading magazines and waiting to have blood drawn?  Most of us don't have that sedate or stress free of a life and need more cortisol to mow the lawn, take care of kids, work full time, fight with our spouses and exercise. 

If you find that you need more than 20 mg of HC per day to function well, don't let your doctor tell you you will be over replaced with cortisol if you take more.  Some of us have active lifestyles, stressful lifestyles and/or thyroid (GH too) replaced at too high of a dose for someone who only has a fixed amount of cortisol in her system.  Know the symptoms of over replacement.  Tell your doctor what they are and which ones you don't have from deviating from his recommendations.

It is far more dangerous for you to be under replaced than properly replaced.  You are unable to store glycogen in your liver if you do not have enough hydrocortisone.  If you do not have glycogen stored in your liver, you will more easily become hypoglycemic.  Hypoglycemia is when you don't have much sugar in your blood.  The sugar in your blood feeds your brain and muscles.  You can die from severe hypoglycemia.  

If your doctor is only prescribing the bare minimum of hydrocortisone, how do you keep a small stash in your wallet, gym bag, desk or purse?  What do you do if you vomit and need to triple your HC dose?  How do you increase your HC for exercise?  Heaven forbid you get a fever and need to double or triple for days in a row?  If you're willing to share your strategies on this, I'd love to hear them.


Pip said...

I'm one of those who functions on 15! Not at the moment though - horrendous cold.

Unknown said...

Hey Pip! I got lots of horrendous colds too when I was not on enough HC...No colds in a loooong time for me. No puking either. Few down days. Yay!

Do you exercise on only 15 as well or do you have to up for that? If you don't take more HC, are you able to not have nausea and still clean house and stuff after? I'm only asking because my endurance limits have gone up with my increase in HC. I'm also useful after exercising now but was not before.

I appreciate you sharing!

Anonymous said...

HI I love this article Dusty! thank you ! I take 27 to 30 but still not sure if i am on the right dose. I don't get nausea or vomiting..but i do get fatigue and I am NOT getting as many lung infections as i used to get.. hardly any at all.

how do we determine if we are on enough or too much?

Debbie said...

I have to take 40 to function. My ER/ doctor-friend told me that every body has its own "normal" and she told me to experiment until I find my "Normal." She also told me to stop taking a generic because some Addisonians don't assimilate the active ingredient in generics due to the fillers and additives. I was amazed at how much better I felt when I stopped the generic and began Cortef. She was right.

Unknown said...

Anonymous, "How do we determine if we are on enough or too much?" This is a great question and I will write a blog post about it right now!

:) Dusty

Anonymous said...

I need 30 to get through a normal, not particularly stressful day. I've experimented with lowering it even by 2.5 and find that, after a few weeks, I'm spending many more days exhausted and unable to get out of bed. Thankfully my doctor (an internist) understands the need for a stash of HC and prescribes me more every month than I normally need to use. I have no signs of over replacement on 30.

I was most interested in you mentioning that low cortisol can cause osteoporosis. I'd never read that before. I've had osteoporosis since before menopause, before Hashimoto's & before Addison's. I've been tempted to try 35mg a day to see if I have fewer surprise days where I don't function, but I've been afraid to because they say over 30 causes bone loss.

Unknown said...

Hey A,

I think the biggest cause of osteoporosis is poorly managed sodium and florinef. There's very little evidence that too much HC can cause osteoporosis. Doctors think of people who are on massive doses of LONG ACTING steroids for a long time (like people with rheumatoid arthritis) and think that replacement doses that are higher than the established norms can cause the same issues.

Here's were I got the info that too little HC can cause osteoporosis "GC is essential for osteoblast differentiation and cortisol deficiency results in osteoblast
immaturity and lower bone mass" from "What is the optimal bone-preserving strategy for patients with Addison's disease?" by Lee and Greenfield.

Osteoporosis is a fascinating topic with AI. The HC gets the bad rap but I think the picture is bigger than most doctors make it out to be. You can't move from fatigue (not enough HC) how in the world can you do weight bearing exercise?! You're not allowed to have steroids that promote bone growth (testosterone and DHEA), how can you keep up bone growth and avoid a heart attack from a weak heart muscle?! Poor management of florinef and sodium,poor regulation of thyroid metabolism, the list goes on and on. I'm getting all riled up.

What it comes down to is you need enough HC to feel well, not just survive with a poor quality of life because that's what a doctor expects you to have. I think the acute effects of chronic under replacement are MUCH MORE DANGEROUS (vomiting, heartattack and death) than taking enough HC to feel well and get exercise and be able to be a participant in your medical care (when my HC is low, I'm unable to work as a partner with my doctors and to fight the insurance company).


Maribeth said...

YEAH YEAH! I just went back up to 32.5mg. Guess what. I don't feel guilty about it. Haaaaaaaaa! If I need it, I need it. Mb

cb said...

I am trying to find my sweet spot and not feel "guilty". damn guilt!
i had a random cortisol test in the early afternoon about 3 hours after an HC dose..the test came back at 10 i am not sure the ranges..but it appears i am not over- maybe i am under?
my last 7am test came back at 5 that was without taking HC meds that am.

Unknown said...

Symptoms should guide your cortisol replacement. There are no established ranges for the test that your doctor ran. If your doctor wanted to tell if you were over replaced with cortisol, he should have run a 24 hour Urinary Free Cortisol AND he should have looked for symptoms: moon face, purple striae, buffalo hump, elevated blood pressure, anxiety, weight gain, insomnia.

The 7 am cortisol was just a sign that your doctor doesn't understand adrenal insufficiency. Do not blindly follow this doctor without asking for documentation or researching.

The 7 am cortisol was a $200 way to say, "Yes, you still have adrenal insufficiency and are not producing much cortisol on your own."


Dawn said...

I have anxiety when my cortisol goes low, or it could be causing sudden sugar swings?

Unknown said...

Dawn, it could hypoglycemia or just what happens when your stress hormone is not present in the right amount to keep you from being stressed or to assist with stress. I don't know! :) Dusty

Dawn said...

Thanks Dusty, at least it helps me know when to stress dose x