Buckets and Streams: Learning the Cortisol Pump

The cortisol pump is changing lives, both patients and doctors are taking notice. As more people switch to cortisol pumping, I see more and more questions and confusion about programming the pump’s basal rates.

Cortisol Pumping requires a whole new way of thinking about your steroid dosing. Whatever dosing schedule or amount you were using with pills does not simply translate into the pump. The continuous method of delivery is so different you can’t really think of it in “doses” anymore. With cortisol pumping you program a set amount of units per hour in time blocks of your choosing, and your steroid is infused at that rate in continuous, tiny, drips. Your rates build on each other. With oral steroids, each pill is a separate dose. The dose you took at 7am doesn’t have any influence on the dose you take at noon, not so with the cortisol pump. Each delivery rate on each time block you program will affect the others. It’s an art really, knowing which times need which rates. Titrating your basal program is sort of like carving a sculpture. The sculpture you’re creating is your perfect cortisol peak. You mess up one part, and the whole sculpture is junk, but when you get it right, its a thing of beauty.

Another analogy I’ve been using a lot lately is about buckets and streams.

Wait, what does that have to do with cortisol pumping?

Okay, pretend you’re a fish, and you’re flopping around on the ground. Think of your pills as buckets of water (cortisol) that just get dumped on you from time to time throughout the day. It’s enough to keep the fish alive, but that’s no way for a fish to live. The pump is more like a stream. It keeps flowing and the water level gradually rises and lowers based on your basal program. You could, in theory, measure all the water in that stream. You could put it in buckets and keep dumping them on the fish as it flops in the dry creek bed, but its not the same. The fish is still going to do much better living in the stream.

What I’m saying is, buckets and the stream are not equal, and neither are pills and the pump. I think new pumpers sometimes set themselves up for frustration when they apply conventional wisdom of oral steroids to cortisol pumping.

To read more about my adventures in pumping follow me at Cortisol Musings!

Adrenal Disease Broken Down

I was sent this link (https://ndnr.com/autoimmuneallergy-medicine/addisons-disease/) by a sister Addisonian. I was really shocked at how broken down this was. I have never came across an article that was so informative. I learned so much and I really wanted to share it with those who are suffering from Addison’s Disease or know of someone who is.

I read through the article (please excuse the pronunciation of things, I know I butchered so much of it) and give a little bit of info about what I was told/not told, tests that were ran or not ran for me, and what steps I want to take to make this disease less of a burden on my body. (www.chronicmomsclub.buzzsprout.com or head to my website to hear the podcast).

Please check out the link as well. Advocate for yourselves and don’t take “I dont’ know or your results look normal” for an answer. You know your body better than any doctor.

I think we all get stuck in the “what do I even say” moment with some of our doctors. Especially those who do not listen. When I was recently in the hospital in April, none of the doctors would even consider looking at my diagnosis of Addisons Disease as a culprit to what was happening to my body. One of them even said, “I don’t know anything about that, but I am sure this has nothing to do with it.” How would he even know when he just admitted to not knowing anything. With Addison’s Disease, stress is a big trigger and with what the doctors were saying (my body was to stressed out), would make me want to research that a little bit more. If my root disease is Addison’s, and stress makes it worse, and you are saying that my body has been over stressed and now is presenting as “functional neurological disorder”, why wouldn’t you try to factor in Addison’s Disease?

I get that they only touch on this during medical school, but I believe that our disease should be more that a paragraph or two in a medical book. We are more important than that. This isn’t something we can recover from. This is our life…Forever.

Keep fighting and keep raising awareness. If we don’t….Who will.

 

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Understanding Fludrocortisone

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.

DISCLAIMER- NOT TO BE USED TO REPLACE MEDICAL CARE OR GIVE MEDICAL ADVICE

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.

What is Florinef  “Fludrocortisone?”

Medication used as partial replacement therapy for adrenocortical insufficiency and for the treatment of salt-losing adrenogenital syndrome.
May also be used for treatment of POTS syndrome. A potent mineralocorticoid medication used to replace aldosterone in adrenal insufficiency and salt wasting syndromes.

What are Mineralocorticoids?

A class of steroid hormones produced in the adrenal cortex and influence salt and water balances in the body. The main mineralcorticoid is aldosterone.

What is Aldosterone?

Aldosterone affects the body’s ability to regulate blood pressure.
It sends the signals to the kidney to regulate the amount of sodium the body sends into the bloodstream or the amount of potassium released in the urine.
It causes the bloodstream to re-absorb water with the sodium to increase blood volume.
Aldosterone also helps maintain the blood’s pH and electrolyte levels.

Understanding Aldosterone-

Aldosterone is closely linked to two other hormones: renin and angiotensin, which create the renin-angiotensin-aldosterone system. It is essential in regulating proper blood pressure and electrolyte balance in the body.

What is Renin?

An enzyme secreted by the kidney that is part of a physiological system that regulates blood pressure. In the blood, renin acts on a protein known as angiotensinogen, resulting in the release of angiotensin I.

What is Angiotensin?

A group of hormones that are part of the renin-angiotensin system.
To create angiotensin, the liver creates a protein called angiotensinogen. This protein is broken up by renin, which comes from the kidney. This forms angiotensin I. Angiotensin I passes through the bloodstream, where it turns into angiotensin II, which is the primary form of the hormone that affects blood pressure and other areas of the body.

Explanations-

Simply put- Proper aldosterone levels are essential to the synergy of chemicals in the body.  In adrenal insufficient patients- fludrocortisone is used to synthetically balance electrolytes and blood pressure levels.

Dosing-

With any other steroid medication, general recommendations are to start out on the lowest dose possible and adjust according to blood renin levels and electrolyte levels determined through a blood metabolic panel lab result.

Warnings-

Fludrocortisone is a potent medication that directly affects cardiac function.
Too high of a dose can lead to high blood pressure, stroke, swelling, weight gain and mental disturbances. Be vigilant of any changes your body is presenting and contact your doctor if you exhibit any of these issues.

Sources-

https://www.rxlist.com/florinef-drug.htm

http://www.hormone.org/hormones-and-health/hormones/aldosterone

https://www.britannica.com/science/renin
http://www.hormone.org/hormones-and-health/hormones/angiotensin

http://www.sciencedirect.com/topics/neuroscience/mineralocorticoids

The Hormone Health Network

Science Direct

Mania, Psychosis and Steroids- Jen’s story

All medicines come with side effects, some good, some bad. The corticosteroid, Hydrocortisone, is no exception. When I started taking Hydrocortisone, I remember reading about the physical side effects and thinking to myself “Well, this is a medicine that is literally saving my life, so I can deal with a few side effects.” However, neither one of my doctors or my pharmicist warned me about the psychological side effects of Hydrocortisone, so when those popped up, I was left feeling confused…and yes, I’ll say it, I ended up feeling “crazy.”

At first, I felt super happy. My anxiety had decreased, I felt less “sick,” I had more energy and felt somewhat normal again. I had a euphoria that felt almost as if I was “high on life.” What I didn’t realize is that Hydrocortisone actually does affect the areas of the brain that manages the regulation of serotonin and dopamine, the “feel-good” hormones.

Feeling happy is a great side effect to have. However, as time went on, other psychological side effects popped up that were not only startling but also very scary. And what scares me even more is the fact that not one doctor that I have seen, both in the hospital and out of the hospital, since being on corticosteroids, has told me that there are mental side effects of being on them. Not to completely pass blame to doctors, as I think a lot of it has to do with lack of knowledge.

The Subtle Mental Side Effects

Side effects can have a wide spectrum, so when you do experience having them, you may not think of them having anything to do with a medication that you weren’t told would cause any mental side effects in the first place. Subtle side effects that I had were anxiety, agitation, irritability, insomnia, lack of concentration, lack of focus….just to name a few. When I talked with my doctors about these symptoms, I was told to take a sleep aid, to take things for ADHD, I was put on two separate anxiety medicines, and even on an antipsychotic medication. I finally drew the line when my doctor wanted to add an antidepressant into the mix.

The Not So Subtle Mental Side Effects

When I was on oral Hydrocortisone, I was sick a lot. I spent a lot of time in the hospital and even though my body required high doses of steroids while I was in the hospital, the doctors didn’t warn me about the psychological side effects of being on high amounts…and more importantly, what can happen when you go from being on a high amount to all of a sudden going back to a normal dose, without tapering. When I was in the hospital, and on high amounts, I felt manic and didn’t sleep. Whenever I went home and went down to my normal dose, I felt lethargic and depressed…thinking it was just a normal emotional response from being in the hospital.

And then…one of the worst possible mental side effects appeared into my life overnight… corticosteroid-induced temporary psychosis…

Choo Choo….All Aboard The Crazy Train

Have you ever wondered what it would be like to wake up one day and be Superman or Superwoman for a day? How about for a few weeks? Imagine feeling the happiest feelings you’ve ever felt in your life and how nothing and no one could take that feeling away from you. Being on top of the world, not needing sleep, having zero fears, laughing all of the time, spending money like there were no limits on your bank account, feeling like you no longer “need” to take any medications, including your corticosteroids… Sounds great, right?

Although I have never experimented with drugs, I imagine that you could probably compare it to the feeling of being “high” 24/7. I felt like my brain was working at top speeds. Not only my brain though…everything I did was at top speeds. I worked a lot of extra hours, I was creative, and I felt like the Energizer Bunny. I had no idea where this “new me” came from, but I loved her! And at first, my family also loved her. My kids thought that I was hilarious and really fun to be around. They loved that I was spending a lot of money on them and had a Y.O.L.O outlook on life.

But after a while, my husband and family started getting worried about me. I did a lot of online shopping and would unintentionally order multiple items, thinking that I only ordered one, but when packages just kept arriving, I justified “needing” 20 new pillows, 2 different colored sets of pots and pans, 3 different pairs of sunglasses for my husband, and a lot of other things that I can’t even remember. I gave my daughter my debit card and told her to go on a shopping spree, bought my son a cell phone for Christmas in “October,” took my daughter to get a piercing just because she wanted one, and was about to just randomly get a new tattoo, until my husband called and the kids told him what I was about to do. That night, he “grounded” me from my debit card and my car keys.

I also abruptly stopped taking my anxiety medications, and got to the point of not taking my Hydrocortisone like I was supposed to either. I thought that my Adrenal Insufficiency was completely healed and that I did not need Hydrocortisone anymore, but I didn’t tell anyone. I kept having symptoms of being low in cortisol and when my husband asked when the last time I took my steroids, I couldn’t honestly remember. At one point, he had to threaten to give me an emergency injection because I refused to take my pills.

Once he realized that I was putting my life in danger by not taking my life-saving medications, he called my doctor. She basically told him not to worry, and explained to him that I was experiencing a corticosteroid-induced temporary psychosis from going from a high dose in the hospital to my normal dose, without tapering. At that point in my treatment, I had no idea what tapering was. My doctor had never mentioned it, the doctors in the hospital never mentioned it, and I was following their orders of going home and going back onto my normal dose. She did order an MRI of my brain to rule out a tumor, but told him that we just had to “ride it out.”

Please Fasten Your Seatbelts…The Plane Is About To Crash

Ok, so imagine having extreme mania (on top of the world, no fears, tons of energy) when you went to sleep one night….and waking up the next day feeling scared of your own shadow, lethargic and completely depressed. When the psychosis wore off, it wasn’t something that happened slowly and over time. It was literally like someone had gone into the electrical box in my brain and reset the breaker, but decided to leave the switch off for a while.

I literally would sleep for 20 plus hours a day, only really waking up to take my medications and sometimes eat food. When I was awake, I was full of anxiety and depression. I not only was terrified of talking to people, going places, but I was convinced that I was dying.

Thankfully, I was never suicidal, although I have read about people becoming suicidal, as another mental side effect. Because we are so wired to listen to doctors, the advice of just “riding it out” was what my husband did.

It wasn’t until recently, when I was researching the psychological side effects of corticosteroid use, that I discovered that there are recommended treatment options to safely bring a person out of the corticosteroid-induced temporary psychosis.

Does The Story End There?

I wish I could say that was the last time I experienced any kind of mental side effects from the steroids. Unfortunately, I have had my share of them…. Having Adrenal Insufficiency is a very difficult disease to manage for most people. Just when you “think” you know everything there is to know, something will pop up, leaving you questioning everything you know about it. Like I said, I recently was researching the psychological side effects of corticosteroid use. I definitely “knew” that there was a connection, but honestly only thought about the temporary psychosis part being an issue.

After that episode of temporary psychosis, I still had side effects…I just didn’t link them to the steroids.

Over the past few years, I have continued to have issues with the “subtle side effects” and totally brushed them off. I have had a LOT of things go medically very wrong with this disease, and have been paralyzed twice with the inability to speak, and have also “died” and had to have a major emergency surgery to keep me alive. This brought on severe PTSD, but even with therapy, I still had those “subtle side effects.” This past summer, when I switched from oral Hydrocortisone to the pump, I finally felt amazing. Things had started feeling “normal” again. My “subtle side effects” had been diminishing.

But right before I had started on the pump, I developed an infection in the hospital, which did not go away. My doctor “guessed” at the kind of infection I had but never took a culture of it, and I followed the recommended protocol of increasing my steroids with a triple dose while I was on antibiotics. The infection persisted, so I was on several bouts of antibiotics. The high amounts of steroids lead to another case of corticosteroid-induced temporary psychosis. Although it was not nearly as extreme as the first time, and it took longer to appear, and didn’t last as long, it still made a major impact on me emotionally. Since the severity was less, it was harder for my loved ones to recognize and be sure that it was actually “psychosis” that I was dealing with. Although I kept denying that I was in “psychosis,” I still was unable to think “clearly” and I ended up making the decision to go from a high amount of steroids down to my normal dosage overnight.

This made me “crash” right away. The “crash” symptoms were the same as before, but since I had done a drastic decrease in my steroids, and I still had the infection, all of a sudden, I had extreme physical symptoms that I was dealing with at the same time. I was then hospitalized for two weeks, had very rare, unexplainable physical side effects from my infection and ended up coming home with multiple holes in my body and a home health care nurse coming to my home to help me recover…all while still dealing with the “crash” emotional issues. PTSD came back full swing, I had severe depression and anxiety, I completely withdrew from social media and from any social interactions with people. I was totally housebound once again and just the thought of getting into a vehicle brought me to a full on panic attack and endless tears.

How could I have allowed this to happen to me again? I was so distraught that I didn’t even have the strength to seek out help from the people that helped me so much in the past. When I was in the hospital, I luckily did have a doctor who seemed very knowledgeable and told me that this happened because I had not tapered. We had a long discussion about the emotional side effects it caused for me and what to do in the future. It still took months for me to come to terms with things. I wanted so badly just to return to a normal dose and not be dependent on a higher dose. However, I knew that with the trauma that my body had been through, I had to be patient and taper down very slowly.

Knowledge Is Power

Since I got home from the hospital and got to the point where I was not crying at the drop of a hat, I was able to monitor my emotions better and take control. Although I did not realize it at the time, the “subtle emotional side effects” became my focal point of things I wanted to conquer and take control over. I reached out to a trusted friend, who helped me come up with a good dosing schedule, I did a lot of self-reflection of what I wanted in life, I read a lot of self-help books, watched a lot of funny movies, and just focused on being happy and present. I evaluated every single thing that was going into my body, whether it was medications, supplements, food, etc. If it didn’t “feel” right, I cut it out of my life. Anything negative that I was holding onto was the first thing to go.

I was then able to completely get off of all prescription medications, including my anxiety medications, except for the steroids. I added in extra supplements and antioxidants that helped promote healing. I no longer need a sleep aid in order to sleep at night. I’ve done a lot of research about the emotional side effects of steroid use, so I’m very careful now with changing my dosage amounts, even when my body is requiring more coverage.

And now that I do know how they specifically affect me, I’ve been able to share my knowledge with my husband and my family so that they can help me to identify any red flags, if they happen to come up in the future. Every single hour can be different for someone with Adrenal Insufficiency who is on steroids and needs to be able to “live” their lives. I am now at a point in my life where unless something pretty major comes up, it’s almost as if I don’t even have the disease. I’m personally conscientiously aware that it is still very real and very much a huge part of my life.

However, for the first time in years, my husband and my kids are able to breathe again. They no longer see me as being “sick.” We enjoy life as much as possible together and once in a while, when I catch a virus or something, they ask me if I’m making sure to updose, not only for the physical aspects of it, but also because they know what it does to me mentally and emotionally.

And this, my friends, is my “new” normal.

Top 5 Tips To Avoid An Adrenal Crisis…And What To Do If You Are In One

So, you have Adrenal Insufficiency and are completely steroid dependent for the rest of your life. As if that is not scary enough, NOW you have to make sure that your levels of cortisol are always under control so that you avoid an Adrenal Crisis and even worst, coma or death. Since I have unfortunately been there way too many times, I figured I would compile a list of the top 5 tips to avoid an adrenal crisis. Also, because we are all human, it is inevitable that at some point you’ll be in one, so I’ve included what to do at that point….

Top 5 Tips To Avoid An Adrenal Crisis…..

  1. Make sure your daily steroid intake is the correct dose for YOUR body. This may seem like a no brainer, but I see this all of the time. How much do you truly need?? Too little and you’ll have low coritsol symptoms. Too much and you’ll be over replacing. The best way to see how much your body needs is a 24 hourcortisol test. This can be a challenge, however. You really have two options. You can do a “day curve” test, which is highly recommended. Or…you can opt to take a 24 hour test on your own through urine. You then ship it off to the lab and they send you your results.
  2. Make sure your steroids are being delivered when your body needs them. Also seems like a no brainer. If you are on Prednisone, chances are pretty good that you are completely covered and don’t have to worry about it. However, if you are on Hydrocortisone, that is a whole new story. You have to take Hydrocortisone multiple times per day to mimic a body’s natural replication. So, how is this done? First of all, knowing your baseline is a good start. Also knowing how fast you metabolize the Hydcrortisone. Some need it every 4 hours, while other people can get away with going 6 hours. The best way to mimic the body’s “normal” is to do circadian rhythm dosing. That will assure 24 hour coverage and will give you a higher quality of life.
  3. Make sure your labs are up to date. When you first were diagnosed, they performed an 8am blood cortisol test. They hopefully also performed an ACTH test to show whether you are PAI or SAI. If not, you’ll want to find out. Other tests needed are a Comprehensive metabolic Panel, CBC Count, Thyroid-Stimulating Hormone or TSH, Autoaintibody Testing, Prolactin Testing. Imaging studies are also needed. You’ll want a chest radiograph done to show current evidence of TB. You’ll also want an abdominal CT scan. And an MRI done to show what is going on with your pituitary function. Another test I would recommend is a DNA test. You can order these through My Heritage or 23 And Me. This will show you what other health issues you may have.
  4. Stress Dose when needed. In a normal body, the body will create MORE cortisol when needed. When our bodies are under stress, whether it is good or bad, it doesn’t even know the difference, it lowers it. How do you handle this? You add more! How much will totally depend on how you are feeling. Some people need an extra 2.5mg, others need more like 20mg. It just really depends on the situation. Are you sick, do you have an infection, or are you just stressed out? Knowing your low cortisol symptoms are VITAL.
  5. INJECT!!!! NOW! When in doubt, ALWAYS inject 100mg of Soluctortef. If you even have to second guess this, it’s time to inject. Do you need follow-up hospital care afterwards? Not necessarily. It depends on the situation. If you can keep fluids down, you’re probably ok. However, if you have a stomach bug and are puking and have diarrhea, the best place to be is at the hospital being monitored and replenished with IV fluids.

Now, let’s talk about what to do IF you are IN an Adrenal Crisis….

First of all, breathe. You’re going to be ok! What I like to do is to ask myself “What do I need RIGHT NOW to take care of myself?” And I just keep asking myself that over and over again until I’m in the clear. Questions you may ask yourself are….

  1. How am I feeling? What are my symptoms? Do I need to stress dose or do I need to inject??
  2. How are my fluids? How about my supplements?
  3.  I need to call 911 or can I handle this myself? Is someone home that can help me through this?
  4. If you need to dial 911, make sure they know you have AI, are steroid dependent and need 100mg of Soluctortef when paramedics arrive.
  5. What if you’re not home? You need to start carrying a “to go bag.” The bag should include things such as your medications, your emergency injection, fluids, and lots of snacks, both salty and sugary. Also, you’ll want to include a letter to the ER from your doctor with correct protocol along with emergency contact info and a list of all medications and supplements taken.

Disclaimer: This is not intended to replace medical advice given from your doctor. Please consult with them prior to adjusting any and all medications.