The Care and Keeping of Adrenal Disease

This was written by an Addison’s disease patient and is not intended to diagnose or treat any medical condition. Consult your health care provider before starting or stopping any medical treatment.

I am NOT a doctor, nor do I claim to be. I am simply an adrenal insufficient woman who has done much research to understand adrenal disease and seeks to help others understand as well.

The care and keeping of adrenal disease.

I am writing this to share the tips/tricks and information I have learned since being diagnosed with Addison’s disease- which is total adrenal failure.

Being diagnosed with Addison’s disease,I had a test done called an ACTH Stimulation test. This test measures how your adrenals react. (Actually I’ve had this test done multiple times for confirmation) I also have had many 8am cortisol labs done. (Example here- Cortisol Test Results- Winslow E. Dixon)

Every adrenal disease patient is different- none of us present the same way. It is often referred to as “Syndrome X” because it presents with such random symptoms.

As for me, I lost an extreme amount of weight, my hair fell out, I turned colors, I started having severe breathing issues, fatigue, weakness, stomach issues, allergic reactions and I craved salt so badly I ate sea salt kernels by themselves.

That was me when I first started getting really ill. Notice the sea salt in the background?  I ate that stuff CONSTANTLY.

I was finally diagnosed and put on prednisone but did not stabilize until I was put on hydrocortisone.

I have fought this battle of adrenal disease for many years now.

Here is what I’ve learned.

The adrenals are an emotional organ. Emotional stress; even “good” stress, like excitement can cause you to need to updose or stress dose.

My definition of added doses.  Updosing= 2.5mg of HC, if my symptoms do not improve within 30 minutes I take an additional 2.5 mg of HC

Stress Dosing- In times of severe stress, vomiting or illness I will take 5mg or 10mg depending on the situation.

If you are vomiting BE SURE TO STRESS DOSE. If you cannot keep your dose down you need to use an emergency injection. ALWAYS carry your emergency injection with you!

In my purse I have my injection, alcohol wipes and a written explanation of my disease and how to use the injection- just in case.

Endocrinologists protocol is to double dose in times of severe illness.

Stress dosing is different for everyone. You have to know your body and your symptoms. Adrenal disease is a fatal disease if not treated properly. I say this not to scare you, but to help you realize what I didnt.  If in doubt, always updose.

That being said, long term high doses have absolutely devastating effects that NO ONE warned me about. I suffered neurological damage after a seizure and then proceeded to need a major surgery then I was bedridden for a year. I was on a very high dose of HC for a few months, even though I am on a normal dose now- I will forever bear the marks of the high doses. I had to endure six months of physical therapy.  I suffered from both the damage from the seizure and steroid myopathy.

I truly believe that I wouldn’t be alive had I not had the high doses- but NO one warned me about the side effects. Losing muscle mass, gaining weight and horrific looking purple and red stretch marks- that was the price I paid.

So, be warned. You do what you have to do. You do what is best for your life. I would rather be fat, scarred and alive than skinny and dead.

I didn’t realize how delicate our systems become with endocrine failure. People don’t understand this- but cortisol plays a role in just about every body system. With synthetic replacement- it simply isnt the same.

I pushed myself harder than I should have. I thought that I was letting my disease “win” if I slowed down at all. I worked two jobs full-time and was in school to be a physician’s assistant. I neglected to pace myself. I didn’t eat, hydrate or rest properly. I lived in a home without air conditioning in Florida. I worked myself into the ground. I was stubborn.

I thought I had to prove myself even more than the average person to prove my disease wouldn’t overcome me, when in reality I was feeding the disease by not taking care of myself.

Don’t make the same mistakes that I did. Pace yourself. Learn your limits. Rest. Hydrate. Eat. Ask for help if you need it.

I am unable to work or drive, at 25 years old.

It didn’t have to be this way and the only person I have to blame is myself.

And this is where adrenal disease is different than any other disease out there.

It is not a disease you can push through.

What do I mean by this?

Example, in diseases like rheumatoid arthritis, movement, therapy and staying active actually IMPROVE the disease.  Things like aerobic exercise can  actually lower inflammation rates and put patients into remission.

With Addison’s- if you push through when your cortisol is low, you will go into crisis. Let me just warn you that being stubborn is the worst thing you can do with this disease.

When I started to decline, I pushed myself even harder. I made myself get out of bed. I threw up at work and kept on working. I kept going to school. I knew in my heart I wasn’t well. I knew I should have rested…but I thought MIND OVER MATTER would work.

I always thought I would be able to push through my illness. Now, I am so ill that it has literally taken me a year to be able to put a pair of pants on by myself. Six months of physical therapy just to be able to walk around walmart. I still can’t work. I still can’t drive.

There is zero shame in taking care of yourself with an illness.

Adrenal disease is a war you literally have to fight lying down. And that is the total opposite of my personality. I want to get up and fight this thing, but I’ve learned.

With adrenal disease- you have to pace yourself.

If you are tired and CAN nap. Don’t fight it.

If you are hungry. EAT.

If you are thirsty. DRINK

If you are around people who upset you, if at all possible GET AWAY FROM THEM.

Please examine your life as to how you can improve it.

Let me just tell you, NO AMOUNT OF MONEY, FAME or PRESTIGE is worth your health.

If your job is stressing you out…find another one.

If your living in a place without normal human comforts (ei- air conditioning)…Move.

Yes, I know. Easier said than done. But I wish I had evaluated my life BEFORE I was forced to.

I didn’t think I could afford to just work one full-time job. No, I was so afraid of being homeless again I worked myself into the ground.

I worked two jobs and now I couldn’t work one job if my life depended on it.

Once your health is  gone, it takes everything with it. Your independence, your money, your entire identity gets rearranged.

Don’t get to my level. Please learn from my stupid mistakes.

 

Other Various things I wish I’d known-

With adrenal disease, our electrolytes are very unstable. Pedialyte is such a great resource if you feel dehydrated or “shakey. ”

Sodium chloride tablets are very helpful. They are electrolyte balancers available over the counter at your local pharmacy.  (Do not start or stop ANY medication without talking with your healthcare provider)

Have your Vit D, Vit b12 checked.  Mine were horribly low and it seems to be consistent with a lot of us who have adrenal disease.

Be vigilant of your potassium levels. Steroids make you “waste” potassium in the body. I have to stay on supplements for mine to be even in the low range. Some primary Addison’s patients have high potassium.  Get regular labs done with your general practitioner. With adrenal disease, it is imperative you keep an eye on your electrolytes.  (Recommended labs- CBC, Vit D level, Vit b12 level, BMP)

Also,  manage your diet-

Oral corticosteroids can cause loss of body protein. For this reason, medical doctors sometimes recommend a high-protein diet for people taking these drugs. However, people with diseases that cause kidney damage should not consume too much protein, as this could worsen their condition. A high-protein diet should be used only after consulting a doctor.  (Source University of Michigan Medical )

 

If in doubt, updose. Too much one day won’t kill you but too little will.

Finding the right steroid and right dose for you is imperative to your quality of life. Prednisone DOES NOT work for me. Hydrocortisone worked better. The pump worked the best. Some people are the exact opposite.

When I was working I was on 60mg HC and had NO weight issues and was able to function.

Now, I am on 35mg HC.

Your dose needs may change depending on your health, work, lifestyle and surroundings.

Always be vigilant of your body’s needs. Adrenal disease is very sensitive to stress. ALL kinds of stress, even good stress.

Being hungry or thirsty stresses your body out.

Fighting and arguments will stress your body out. I have found that emotional stress takes more of a toll on me than physical stress does. The adrenals are an emotional organ. They are literally controlled by the brain ( hypothalamus ) to react in stressful situations.

And here is what people DO NOT understand about adrenal disease.

In a normal person, with any different emotions their adrenals will react…..

Normal Person- Gets a kiss from their crush or gets into a fender bender in their car; their adrenals will release more cortisol and adrenaline.

In an adrenal failure patient- You will have to artificially manage your cortisol. Something emotional happens- you will need more cortisol. You have to regulate this because your body no longer can.

There is no mind over matter.

There is no push through it.

Don’t do it.

IF IN DOUBT UPDOSE.

If you are TIRED,  REST!!

Take care of yourself.

I always thought my mind would be stronger than my body, but that got me into major trouble.

You don’t have to prove anything to anyone.

 

 

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