Up-dose or Collapse: A Lesson about managing cortisol with adrenal disease

In a normal person, during situations of emotional or physical stress their body releases more cortisol. The excitement from a happy event, the sadness from a death of a loved one or the strain from exercising are examples of things that would cause the body to release more cortisol.

In an adrenal insufficient person, this does not happen.

They have to artificially manage their cortisol. Their personal cortisol needs may differ from day to day. No two days are the same and it is a struggle to regulate proper cortisol levels.

Most of us “adrenal disease veterans” know this.

We know we have to constantly be vigilant of our cortisol levels.

Yet, most of us still struggle when deciding to up-dose.

We typically think things like……

Do I REALLY need more cortisol?

I can push through this….

I’ll be fine….

Some of our endocrinologists scold us for up-dosing or relying on a higher basal cortisol dose.

All these things flood our minds when we are trying to manage our adrenals artificially.

Unlike diabetics who can check their blood sugar, there is no cortisol meter for adrenal patients. We have to constantly be aware of our levels, which can present with various signs of “lows” and everyone is different.

How do you know when you need to up-dose?

How do you know when your cortisol replacement is correct for you?

I had to learn a hard lesson recently about the true importance of up-dosing with adrenal insufficiency.

I have adrenal disease, endometriosis, medullary sponge kidney disease and I am currently on the cortisol pump.

This past weekend, I was a bridesmaid in my baby brother’s wedding. The wedding required me to travel, stay away from home and was very physically taxing.

The wedding was Saturday, we traveled to the destination on Thursday and the weekend was filled with pre-wedding activities.

It was a massive struggle with my health. The traveling alone was taxing….then the rehearsal dinner….entertaining guests and having to sleep on a couch….

I started to develop low symptoms, which for me are unbearable cluster migraines which usually result in temporary blindness.

A board member of this Foundation and fellow adrenal disease patient texted me to check on me. I told her my migraines had come with a vengeance.

“Are you sure you are replaced enough? Sounds like your low.” She said.

“Yeah, I’ve bolused a few times here and there.” I responded.

(My bolusing was 2-4mg here and there…which I now realized was like nailing jello to a tree with all the activity, heat and symptoms I was enduring)

I did all my pre-wedding duties and was exhausted.

When I woke up the day of the wedding, my migraine was even worse. But it didn’t matter. I HAD to DO what I HAD to DO!

I was determined that I was going to be in my baby brother’s wedding.

I determined that I was stronger than this disease. Mind over matter was going to work for me that day!

So, I pushed through……

My board member friend called me.

“Winslow, I just wanted to call and make sure you were preparing for today. Have you bolused? Did you adjust a temp basal increase?” She asked.

I had never before done a temp basal increase. I always think I can just endure whatever I force myself through.

I explained to her I’d bolused here and there and she convinced me to set my rates to a 200% temp basal increase. I hesitantly did it, mainly because the migraine was at an unbearable point and I hoped it would quell the awful pain.

My pump rates were set higher and I continued to get ready for the wedding.

Migraine didn’t stop but I pushed through anyhow.

The first duty of the day was to take pictures before the wedding.

Little did I know, these pictures would be done fully dressed in the ballgown bridesmaid dress, in the Florida heat with tons of walking around to different areas outside.

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(Here is a picture during the ceremony, as you can see the dresses were not made for the heat of Florida in the summer!)

We started taking pictures at 11:30 and didn’t get done until 1:30. I had spent 2 hours in the heat. Being salt wasting, I struggled to keep control of my consciousness.

My head was killing me. All I wanted was to lay down in a cool room and eat an entire shaker of salt and drink cold water.

But the wedding started at 2:00pm. I had to push through. I had to make it. I had to smile and look like I wasn’t as absolutely miserable as I truly was.

I didn’t have any water so five minutes before the wedding, I choke down/dry swallowed a migraine pill (sumatriptan) and hoped it would quell the unbearable throbbing going on in my head.

I was in a corseted dress and couldn’t get to my pump. I felt myself struggling to stay conscious. Even with the temp increase, I was getting dangerously low. I quickly asked my mother to access my pump and give me a bolus. This was a challenge because it was hooked to my spanx in the back of the dress. Mom had never before touched the pump so explaining how to bolus was a challenge, especially since we were in a hurry.

She bolused the max my pump would at 5units (mg)

I quickly rushed into the wedding line up and smiled the best I could.

During the wedding, I stood the whole time. My headache only got worse but I kept smiling.

Thoughts of my stubborn personality mindset swirled through my head.

I will not ruin this day for Joshua and Rachael.

I can make it through this.

I will not throw up.

I am stronger than my disease.

I will not let anyone see me collapse.

I’m stronger than this pain.

Just breathe, Winslow. Just breathe……

You are strong enough to endure this suffering.

Smile…..don’t ruin this for your brother….

I made it through the wedding, they said I do and I wanted to say GOODBYE and go lay down.

I’ll just sneak off and miss the reception….. I thought.

No. We had pictures to take after the wedding.

After that, I was informed we would be announced into the reception as the bridal party.

I realized sneaking away wasn’t an option.

My assigned seat was right next to the bride at the head table.

I felt my cortisol dropping. After I was announced into the reception I grabbed my plate, acted like I was going to get food and just kept on walking back into the church.

I started losing my eyesight, getting tunnel vision and realized I was heading into crisis.

I wasn’t going to ruin this day for my brother.

I refused let everyone witness the trainwreck that my health is.

I struggled to walk back into the room the bridesmaids had gotten ready in, turned the lights off and collapsed in the floor.

How am I low with a 200% increase?! I wondered.

I suddenly got a strong wave of nausea and started vomiting.

Crisis, I knew I was headed straight into crisis.

I texted a friend of mine with my fading eyesight and hoped they’d alert my family…which they did not……

The bride’s sister found me laying in the floor of bridal suite room.

My intention was to slip away and get it together enough to return to the reception. But I was too low and ended up vomiting and passing out.

By the time my dad got to me, I had lost my eyesight and was fading in and out of consciousness.

He took me back to the house we were staying in. I laid down and tried to keep it together.

I knew I needed more cortisol.

My good friends from home had come to the wedding and immediately came to my aide so my dad could return to the reception.

My best friend, her sister and her mom helped me get out of my dress, administered more cortisol and gave me electrolytes (pedialyte).

Throughout the whole wedding, I had only had 50mg of cortisol. My normal dose is 37mg daily.

Though I had 200% increase, it was NOT enough for all that activity, physical and emotional stress.

Had the board member not called me and made me increase my basal rates, I’m quite sure I’d have suffered a major crisis and may not have survived.

My choices were either UP-DOSE or COLLAPSE.

The lessons I learned-

1-There is NO magic number for cortisol. If you need it you need it!

2-Do not be afraid to updose.

3-Give your body what it needs!

4- Artificially managing a body system is complicated and needs careful attention.

5- It’s better safe than sorry.

Take a page from my stupid book and up-dose BEFORE you crash.

This is your life, your disease and your health.

Take care of yourself. Give yourself enough cortisol.

Wishing you comfort and cortisol,

Winslow E. Dixon, Adrenal Alternatives Founder

Thank you foundation board member, Erin Fallon for talking some sense into me.

6 thoughts on “Up-dose or Collapse: A Lesson about managing cortisol with adrenal disease

  1. Stephanie Marsh July 19, 2018 — 10:02 pm

    Winslow, This is a great article! Even after eight years with AI, I am just now really letting this lesson sink in. It doesn’t help that the first endocrinologist I had who knew nothing told me that taking more than my daily dose was not an option. Thanks!

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  2. Oh, what we do to appear “normal” and not upset our family and friends! I am glad you got through it and survived! Did you ever go to the hospital??

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  3. good lesson and I have similar experiences and i’m still learning.

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  4. It really makes me angry that you endured so much trauma over not up dosing for this event. You suffered through so much of it. I inject when I have an intellectual mindset to reason with myself that an event is going to zap me so I prepare with plenty of injectable solu-cortef and syringes. I begin to up dose by injection rather than oral doses to save my stomach the day prior to the event, the day of, and the day after I up dose to bring my body back down to a regular dose, and I give myself a rest day. I find that a good strong dose of 50 mg bolus before the migraine starts is enough to pull be out of it. but I don’t stop there, I do another 30 mg a few hours later, again all by intellect and not relying on how my body feels. It my body has already had time to feel symptoms then half the time it’s already too late to increase my dosing. Sometimes it isn’t planned for and I feel symptoms and I up dose right away, but that is when my body is telling me that something has come up that usually shows within a day or two. I find going to the hospital does no good since it’s already too late and I must take matters into my own hands with the support of a very good doctor who is not an endocrinologist, he is internal medicine, but he allows me to call the shots as I know my body and condition better than he does. I wish everyone the best in finding how to care for themselves in a balance of keeping your levels up enough to help you live a better quality of life. Put out the feelings of doom and side effects. I’d rather live a full life then worry about my side effects because it’s a trade off and there is absolutely nothing that can be done except to manage life by keeping as healthy as possible, resting, pacing and enduring. My best to all.

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  5. I suppose what surprises me is that you actually did up dose. At least, I would think a 200% increase in dose for an extended period is up dosing. So if a double dose is not enough how does determine what is enough, especially when one is dealing with a unique siruation?

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    1. This is why Adrenal Alternatives advocate so heavily on treating a person rather than a textbook suggesting the number of milligrams a person needs. Truth be told, during a time of stress, the body produces high amounts of cortisol. In this situation there were multiple things requiring a higher amount of cortisol. (Heat, physical exertion, pain and emotional situations.) As as far as the 200% increase, at the time, my rates were set at 1mg an hour…which at the double rate was on 2mg an hour which was clearly not enough to handle all that my body was going through. The lesson here is cortisol replacement must be based on each person’s symptoms, not a designated milligram. Just like diabetics needs for insulin can differ from day to day, so do the needs of severe forms of adrenal insufficiency. Only when we begin to treat how we feel verses what supposed dose we are supposed to be on from some dated research protocols (which have not changed in the US since 1920) will be begin to improve quality of life with this disease.

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