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.

DSC_0140.JPG

(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.

DISEASE EQUALITY- DIABETICS AND ADRENAL PATIENTS BOTH DESERVE ACCESS TO INFUSION PUMPS

DISCLAIMER- This post should not be used to diagnose, treat or manage any condition. Management of adrenal disease is serious and requires medication that is managed by a reputable endocrinologist. There is no cure for adrenal disease and this post is not suggesting this treatment is a cure, only a management tool.

Adrenal Insufficiency and Diabetes are both difficult diseases to manage and this Foundation sympathizes with T1D and T2D patients. Both are serious, endocrine disorders and we are in no way downplaying the battle of diabetic patients, we are simply using it as a comparative tool to explain adrenal disease, as most people are unaware of it.

Adrenal insufficiency is a disease where the adrenal glands fail to produce the proper amounts of steroid hormones. There are many different forms of adrenal disease, but the treatment for all forms is the same- steroids for cortisol replacement.

Type 1 Diabetes is the disease where the pancreas fails to produce the correct amount of insulin, thus rendering someone insulin dependent.

Both of these diseases are endocrine disorders.

Both of these diseases require life-long replacement therapy.

The adrenal insufficient person is dependent on cortisol.

The diabetic is dependent on insulin.

Both of these diseases are life threatening.

Both of these diseases require daily monitoring.

Almost every cell in the body has cortisol receptors, making it a crucial hormone. This hormone impacts multiple functions of the body. Without adequate levels of cortisol, the body will go into an adrenal crisis which will result in organ failure and eventually death.

Cortisol impacts blood sugar levels, metabolism, stress response, inflammation levels, aids in the immune system, affects the metabolic processes such as the salt and water balances within the body and it also greatly impacts the circadian rhythm.

Unlike diabetic patients, adrenal disease sufferers have no meter to check their cortisol levels. They must be constantly vigilant of their own personal signs and symptoms of low cortisol. and require an emergency injection if their levels drop too low.

The standard treatment for all adrenal disease patients is daily cortisol replacement medication- steroids.  Medications such as prednisone, dexamethasone or hydrocortisone are prescribed to replace the deficits of steroid hormone in the body. Steroids have a myriad of side effects ranging from weight gain to emotional disturbances. Long term steroid use has been linked to damage of the bones, eyesight and even muscle tissue.  Yet, this is the only treatment for 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 with pills. 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.

The most commonly prescribed steroid for adrenal insufficiency is hydrocortisone (HC). This is the bio-identical steroid medication. This medication has a blood serum half life of 90 minutes and must be taken multiple times a day.

Most adrenal patients struggle with quality of life due to this mismanagement. Oral HC must be processed through the stomach and the liver before reaching the blood stream.  This causes a constant rise and fall of cortisol levels, which results in subpar function.

Below is what the natural circadian cortisol rhythm is supposed to look like-

naturalCircadian

This is the circadian rhythm of an adrenal patient on HC.

UnnaturalCircadian

(This image was created using Clearly Alive‘s Steroid Dose Plotter)

Notice how it is a constant up and down motion? This causes fatigue, headaches, irritability, blood sugar issues and lowers quality of life.

The quality of life is vastly poor due to this lack of balance. Oral HC cannot do what natural cortisol can.

But there is solution to help create a more natural circadian rhythm!

The use of solu-cortef (inject-able version of cortisol when mixed with saline) used in an insulin pump programmed to disperse cortisol according to the natural circadian rhythm by programming rates of delivery into the pump.

This therapy bypasses the gastric passage and is able to deliver cortisol in a more natural way. With a pump, an adrenal insufficient patient can receive a constant supply of cortisol and will not suffer the ups and downs with oral HC replacement. Side effects due to mal-absorption are decreased and patients have been reported to have improved sleep, weight management and experience an overall improvement in their energy levels and sense of well-being.

This therapy can literally give adrenal patients their lives back, and yet so many are unable to receive this treatment.

Professor Hindmarsh, is a pioneer for this life changing treatment. He has done much international research and has proven that every single patient he has placed on this therapy found improvement. Yes, 100% success rate! That is unheard of in the rare disease community.  Granted, this is a small group of patients who’ve been exposed to the pump so as awareness grows that stat may fluctuate.

The pump is not a cure for adrenal disease, but it is an option and a ray of hope for those who are bedridden with no quality of life.

If there is another option for adrenal disease, why is the pump therapy only available to diabetics?

Are adrenal patients not worthy of a better life?

Adrenal patients should have the same rights as diabetic patients. All diseases should have the opportunity to receive the best treatment and care possible.

PumpAware

10 Things I Wish My Endocrinologist Would Have Told Me….

I was diagnosed with Adrenal Insufficiency on March 23, 2016. When I met with my first Endocrinologist, we’ll refer to her as Dr. W, I knew nothing about Adrenal Insufficiency so I took a notebook with me, prepared to take lots of notes. In a nutshell, this is what Dr. W told me…”Take Hydrocortisone twice a day, I’ll see you every 6 months for labs, and you’re going to be able to live a normal life again!” The “2016 me” was beyond ecstatic, after suffering with symptoms for over 8 years. The “2018 me” rolls my eyes and wonders how this doctor ever made it through medical school, let alone becoming a “specialist” in medical care.

If you’re anything like me, I love knowledge! As soon as I was diagnosed, I started spending hours upon hours researching my new diagnosis. I found support groups on Facebook, with people who were members that each had their own Endocrinologists and ranged from being newly diagnosed to having Adrenal Insufficiency for decades. I quickly realized how much Dr. W did not tell me, and after having a couple more appointments with her, I realized that I knew more about my illness than she did. As you can probably guess, I fired Dr. W and found Dr. C, who is very knowledgeable and has an appreciation of the fact that I probably know just as much about Adrenal Insufficiency as she does.

Over the past couple of years, there have been many newly diagnosed people who have joined the support groups on Facebook and have posted questions, desperate for answers, just like I had been at one point. Over time, I have become very frustrated because of the overwhelming number of newly diagnosed people who’s doctors were basically telling them the same thing Dr. W told me, and nothing more. So, I figured I would compile the Top 10 things I wish my doctor would have told me when I was newly diagnosed. I’m not a medical professional, and before you change anything in the care of your Adrenal Insufficiency, you should consult with your doctor.

1.“Taking Hydrocortisone 2 times per day will not be enough!”Hydrocortisone stays in a body anywhere from 4-6 hours at a time. When I took my Hydrocortisone twice a day, I would feel great for about 2 hours each time I took them, but felt horrible the rest of the day. Little did I know, after the Hydrocortisone metabolized out of my body, I had no cortisol in my system, which is why I felt so horrible and continued getting sick. A normal body creates cortisol 24 hours a day, so it would make sense to take the medication that is supposed to replace the lost cortisol, as closely as possible to how a normal body would create it. In order for that to happen, a person needs to take Hydrocortisone between 4 to 6 times per day, depending on how quickly their body metabolizes the Hydrocortisone.

2. “How much and when to take Hydrocortisone matters!”In order to mimic a normal body’s output of cortisol, you have to take Hydrocortisone in a way that will be as close to how the body produces cortisol as possible. How do you do that? You have to follow the Circadian Rhythm dosing schedule. For me, since I metabolize Hydrocortisone every 4 hours, that means I need to take it 6 times a day in order to have 24 hour coverage. Is it a pain in the butt? It sure is….I have to set alarms and even wake up in the middle of the night to take my meds. Is it worth it? It absolutely is! Before I started following the Circadian Rhythm dosing schedule, I just guessed at how much I needed to take every time. I knew that normal bodies had higher amounts of cortisol in the morning and very little at bedtime, so I just took the highest amount when I woke up and tapered down during the day, and took my last dose at bedtime. This schedule not only had me feeling awful when I first woke up and having highs and lows throughout the day, but I was also over replacing my cortisol at times during the day and I had no cortisol in my body at night and early in the morning, when a normal body would have cortisol.

3. “You will have to stress dose!”Do what? Dr. W never told me that there would be times that I would need to take extra Hydrocortisone. In a normal body, anytime the body needs extra cortisol, the adrenal glands produce more instantly. This is not the case for people with Adrenal Insufficiency. At times when we need more, our bodies metabolize the Hydrocortisone faster and are left searching for more. How much extra to take and when to take it really depends on what is currently going on inside of your body. If you are having additional emotional stress, even if it’s good stress, like attending a wedding, you’ll have to take a small amount extra. If you have a stomach bug or an infection, you’ll have to double the amount that you take during the day. And if you’re puking or having surgery or get into an accident, you’ll need 100mg of Solucortef, which is the emergency Hydrocortisone. It’s very important to know what your symptoms of low coritisol are and to listen to your body.

4. “You will need to carry an Emergency Injection with you at all times!”Not only did Dr. W not tell me about Emergency Injections, when I asked her for a prescription for one, she told me I didn’t need it. Make no mistake, not having an Emergency Injection on you at all times can be deadly! I didn’t realize just how important having one at all times was until I had an Adrenal Crisis, wasn’t breathing, and ended up “dying” three times in one night. Where was my Emergency Injection? Sitting at the pharmacy because I hadn’t gotten around to picking it up. I have had a few times where I’ve gone into an Adrenal Crisis and wasn’t breathing, and after my husband injected me with the Emergency Injection, I started breathing within a minute or two. Dr. C makes sure that I can have several on hand at a time, with plenty of refills. She also advised me to inject as soon as I cannot keep my oral meds down if I am puking.

5. “You will gain weight!”Say it isn’t so! I have always been a very thin person. I could eat whatever I wanted and never had a weight problem. At my second appointment with Dr. W, I was horrified when I had gained 15 pounds. Dr. W told me not to worry about it because it was just the Hydrocortisone getting my body metabolized, and that I shouldn’t gain anymore. Now, I look back at those 15 pounds and how horrified I was, and only wish that I could go back to that weight. I kept gaining weight and had no idea why. I rarely eat sugary foods and I hadn’t changed my eating habits to support the weight gain. I saw many posts on the support groups of people who had gained weight, so I thought it was just something that happened and couldn’t be controlled. Finally, one of the Admins of one of the support groups on Facebook wrote a post about why people gain weight on steroids. Basically, she said that carbs instantly turn into insulin, so our bodies have a huge rush of insulin every time we eat carbs, and that turns into fat. Seriously? I love carbs! Give me bread and pasta and I’m a happy girl. Well, now I’m a chubby, happy girl. After doing some research, I found that following the Ketogenic way of eating was one of the only options for losing weight while on steroids. When I follow that way of eating, I do lose weight, but when I give into my carb cravings, I start gaining again. So, carbs and I had to break up.

6.“You’ll need to take a Calcium supplement and other supplements!”I have a good friend of mine that is a doctor. After I was diagnosed, he asked me how much Calcium and Vitamin D my doctor had me on. “None” was not the answer he expected. He told me the importance of taking Calcium and Vitamin D every day, because steroids rob your bones of Calcium and it can lead to Osteoporosis at a very young age. Also, because the Adrenal Glands control so many of your hormones, it’s important to have your other hormones tested to see if you need to be on any other supplements. For me, I have to take a DHEA supplement every day. I didn’t even know what DHEA was until recently. I was feeling sluggish and had to take naps during the day. Dr. C tested my DHEA levels and they were low. Now, I take a DHEA supplement every day and my energy level has improved tremendously.

7. “The days of going to the hospital are not over!”Not only are the days of going to the hospital not over, now that you have been diagnosed with Adrenal Insufficiency, you are going to have to be very knowledgeable and become a strong advocate for yourself for when you do have to go to the hospital. I thought my hospital days were over…I was wrong. I also thought that since I finally had a diagnosis, doctors would treat me with the correct treatment plan and would finally stop treating me like my symptoms were in my head…again, I was wrong. Unfortunately, I’ve been to the hospital many times since being diagnosed. I have found that there are two types of doctors. The doctors who took an 8 hour class in med school that think they know “everything” about Adrenal Insufficiency. And the doctors who admit that they don’t know as much as I do about it and ask me how to appropriately treat me. You will quickly figure out which kind of doctor you’re dealing with, and you need to be prepared to deal with the first type. I have “fired” doctors in the hospital because they refused to listen to me and have actually caused me to go into an Adrenal Crisis, in the hospital, under their care.

8. “Be prepared for an Adrenal Crisis!”Some people with Adrenal Insufficiency can go years without having an Adrenal Crisis. Other people have several a year. Knowing the symptoms of low cortisol can be detrimental to keeping you out of an Adrenal Crisis. Knowing the signs of an Adrenal Crisis will save your life! Always make sure you have your Hydrocortisone and your Emergency Injection with you at all times. Last summer, I was camping and decided to go out on our boat without any meds. I started having low cortisol symptoms, so my husband drove the boat to shore so that I could walk back to our campsite and take my Hydrocortisone. However, I got lost while looking for the campsite. By the time I finally found it, I was already in an Adrenal Crisis, and ended up spending the next two weeks in the hospital because of the severity of the Crisis. Also, making sure you always wear a Medical Alert ID bracelet is essential and making sure your loved ones know what to do when you do go into a Crisis is crucial.

9.“You are not alone!”When I first got diagnosed with Adrenal Insufficiency, I felt very scared and alone. I had no idea that there were thousands of people, from all over the world, just like me, who were living with this disease. Once I found the online support groups on Facebook, I felt a sense of peace. Suddenly, I could find someone to talk to or ask for advice 24 hours a day. Some of my best friends now are people I’ve met online in the support groups. Although I love my friends who do not have Adrenal Insufficiency, they don’t completely understand it, so it’s nice to be able to talk to people who are living with it every day like I am.

10. “This is your new normal!”Based on what Dr. W told me, I expected my life to go back to the way I felt prior to diagnosis and prior to having symptoms. I’m a little hard headed, so I waited over a year before I finally came to the realization that this life was my new normal. I will always have Adrenal Insufficiency, I will always have to take replacement steroids to live, I will always have to be prepared for good days and bad days. The sooner you can accept this, the happier you’ll be. Just remember, you’re stronger than you think you are! You are an Adrenal Insufficiency Warrior!