Adrenal insufficiency

Hello everyone, welcome to chronicallyjuliann.com. Today the topic I want to discuss is adrenal insufficiency… and that is because I was diagnosed with it, again, today because my cortisol levels were undetectable per lab work.

Cortisol helps your body respond effectively to stress. It also plays a role in bone health, immune system response, and the metabolism of food. Without the proper levels, one can experience dehydration, pain in abdomen, fatigue, sudden dizziness, severe chills, vomiting, and even loss of consciousness. Low blood pressure is also common. (Side note, I have experienced all of these symptoms recently.)

The low levels in my blood, mixed with my very intense symptoms, convinced my medical team that I had adrenal insufficiency again.

For those of you who are unaware, I was treated for adrenal insufficiency last year through April 2020. I stopped taking the steroids when my endocrinologist said my glands were working properly again and I could discontinue the medicine. I did as my doctor said but felt lots of symptoms return – like fatigue and weakness.

Currently, steroids such as Cortef are the only treatment available to treat this disease. But the side effects are very extreme – weight gain, irritability, and hair growth are a few.

Now we fast forward to last week when I had my surgery. The procedure went very well, but my heart rate was too fast, or what medical professionals refer to as tachycardia. At complete rest, my heart rate spiked to 180 bpm and a crash cart had to be brought in. Luckily, they were able to reduce my heart rate with a medication called Adenosine and no paddles were needed.

After days of tests coming back normal, including an echocardiogram and a CT scan to rule out a pulmonary embolism, the medical doctor decided to check my cortisol levels again. Sure enough my hypothesis was correct! My adrenal glands were failing again. He explained to me how lucky I am to not have died during surgery since I did not receive a loading dose of steroids.  

Lastly, it is a life-threatening condition that I will have to manage for the rest of my life. For example, when the body is under stress (e.g. fighting an infection or during surgery), this deficiency of cortisol can result in death. During those times patients are supposed to double their regular dose or receive a “loading dose” through an IV. I had neither before my surgery because I had the “all clear” from my previous physician.

I am grateful to have an answer as to why I had such severe symptoms. Getting news that you have a life threatening condition is never easy, but it at least validates the fact that I have not been well the past 6 months.

I hope you learned something interesting from this post. Follow me on Instagram for more information @chronically_juliann

update Day 10 postop

Today is day 10 in the hospital. It has been a lonely experience, since COVID19 restrictions do not allow friends or family to visit. I have had to advocate for myself, which can be quite challenging while you’re in so much pain and on multiple medications. I am grateful for my nurses who have come along side me and helped me talk to the doctors about my pain/anxiety.

Part of the reason I am still admitted is because I’ve had some major set backs and my pain is still high. However, the bigger problem is my heart rate is uncontrolled. We’re talking really uncontrolled. Most of the day I am tachycardic, with a heart rate of 110-135. The worst experience was when I passed out due to my high heart rate and landed directly on my butt (which if you don’t remember is my surgical site.) To say it was excruciating would be an understatement. In another episode, I was at complete rest and my heart rate jumped up to 180.

This prompted my nurse to call the “Rapid Response Team”, which is a group of nurses and doctors who run codes in the hospital or assist in acute crises. It was very overwhelming to have eight nurses and two doctors run in and immediately start barking orders. Everyone had a specific job during the event, so I knew everyone was necessary to be in my room, but it was extremely nerve-wracking as the patient. Multiple people screamed “calm down” at me, which is literally the WORST way to get someone to calm down.

Thankfully, after a dose of adenosine and lots of fluids, my heart rate came down to the high 90s. Although my heart rate improved, there were still a lot of questions to be answered. Most importantly being “why is my heart rate so high at rest?”

In response, my doctors ran new blood work, performed an echocardiogram, and got a CT scan to rule out a pulmonary embolism. Luckily, the imaging was all normal. But the blood work showed that I am in adrenal failure again.

My attending physician was extremely worried when he received my blood work results; he explained that normal range for this cortisol level test is between 6-10… mine was 1. This means it is nearly undetected in my blood stream.

The adrenal glands are located just above the kidneys and consists of two parts. The outer portion, called the cortex, produces cortisol. This is an important hormone for controlling blood pressure. The inner portion, called the medulla, produces the hormone adrenaline (also called epinephrine). Both cortisol and adrenaline are released in response to stress. Because my adrenal glands are not working properly, the stress from the surgery ultimately caused me to have an acute adrenal crisis.

Other symptoms that occur because of it are severe tachycardia (check), chronic weakness/lethargy (check), severe pain throughout the body (check), vomiting/diarrhea (check), inability to regulate body temperature (check), irritability/depression (check), and worsening anxiety (check)!

Earlier in this post I stated I was in adrenal failure “again”, which means this is not the first time I’ve been treated with steroids for this problem. I was on steroids daily for almost a year, then was given the all-clear by my endocrinologist this April. I stopped taking the steroids as recommended by my doctor, but unfortunately, this was not good advice. Based on comparison to the lab work from April through now, it is apparent my adrenal insufficiency never improved.

As for now, I will stay in the hospital and receive steroids/fluids until I am healthy enough to go home. I am still recovering from surgery, too, so I will be resting a lot.

December update.

It’s been a hell of a month. Just before Thanksgiving I was hospitalized for sepsis (a bacterial infection in your blood.) I had a high fever, low blood pressure, and fast heart rate. The pain was unbearable too. My whole body ached and I felt so weak. I cried for two days, partly due to the pain, but mostly from the frustration. Questions like: ‘Why am I sick again?’, ‘What did I do to deserve a life of constant illness?’, ‘Will I ever be recovered?’ circled in my head, spinning around like an uncontrollable top. I felt hopeless and completely discouraged.

While the sepsis improved through nightly IV antibiotics, my nutritional status continued to fail. At the time of my admission my electrolytes were dismal. For example, my phosphorus level was undetectable and my magnesium, calcium, and potassium all had to be replaced. As the doctors tried to replenish these, they found the oral route was insufficient. So they moved on to replacing it through my port (intravenously.)

With minimal improvement even from the IV electrolytes, it was determined I was a candidate for total parenteral nutrition (also known as TPN.) This type of nutrition is not processed in the gut, therefore is better absorbed by people like me. It is composed of broken down lipids, proteins, vitamins, and electrolytes. The nutrition runs for 24 hours a day through a port, which is as disrupting as it may sound. Even things like using the restroom and taking a shower are affected by the bag.

I struggled with thoughts of despair, inadequacy, and fear throughout this time. I felt like I was at my wits end with my health status. I was tired of being sick, tired of endless doctors appointments, tired of only having the energy to move from the bed to the couch, and tired of not working.

While recovering from all of this, we received news that my father in law passed away unexpectedly. It added sadness, stress, and more emotion to an already difficult season. We will miss Jack and his infectious laugh. His presence was always warm and friendly and he had a great way of telling stories.

Jack’s passing from an acute health condition made me appreciate the life I have and the chance to do all I can to improve my own status. I will continue to eat well, exercise, and get restful sleep as a way to combat the fact that life can end in a moments notice. I want to do what I can to remain healthy, even if I can’t control everything that happens to me. 

In total I completed TPN for just over a week, then had my electrolytes rechecked. Luckily everything was good and I was able to return just to my regularly scheduled maintenance fluids instead of the full nutrition. The lactated ringers are much easier to manage. I only have to hook up to them for a few hours a week, instead of 24 hours a day as with the TPN.

Great news is I may even be able to stop the fluids in a few weeks! My doctor is going to discontinue me after 5 more weeks and see how I do. I am hopeful I am moving in the right direction and that I will not need the fluids in the future.

Overall I am feeling much better. I have started exercising again, which is an activity I truly missed over the past year. I am going slow (and not lifting any heavy weights above my head) until I feel stronger and healthier. But having the ability to go to the gym and feel productive is an amazing feeling. I don’t feel like I am at odds with my body anymore. I am working on talking to it better, feeding it better, and resting when I need. This combination seems to be facilitating healing.

My inpatient hospital guide.

As someone who spends a great deal of time in the hospital, I like to have certain items I always bring with me that make the trip easier. I thought I would share my list with you and ask you to comment with any suggestions of products you use!

Notebook for all health related information

Most important to me is my “healthcare notebook.” I carry this book with me daily so I can access the information at any time and so if there is an emergency others can know the medicines I am on and what doctors treat me. I organize it into different topic areas such as “doctors appointments”, “medical purchase receipts”, “vitals log”, “medication list”, “home health information”, and “questions to ask physician.” Anyone dealing with an illness could benefit from this sort of note-taking system. Doctors run on data, so having an accurate log of vitals, ostomy output amount, and other important symptoms is the easiest way for them to make appropriate decisions. I jot down any question that comes into my head throughout the day, ensuring the 5-10 minutes a day I spend with the physician are productive and I don’t forget what I wanted to say. I also write down their answers, because processing that information and retaining it can be difficult – especially if on sedating medication. This particular notebook was gifted to me by my mother in law. It reads “just a girl boss building her empire.” It makes me happy every time I look at it! So have fun with the cover and get whichever size feels most useful for you.

Deep V-neck shirts to access Portabella (my port.)

I always pack comfortable clothing that can access my port, which helps me avoid wearing a terrible/oversized gown during my stay. I actually leave a small duffle bag packed with a few v-neck shirts, coordinating pajama pants or sweatpants, fuzzy socks with grips on the bottom, comfy underwear, and a robe in my room just in case. It might seem excessive to have this packed prematurely, but it saves so much time when trying to get to an emergency room.

It is important you wear clothes in which the nurses can easily access your port and that doctors can evaluate your ostomy without interference. Because I am conscious about what the staff will need access to, I have never been told I have to use a gown instead! This is a big deal for me, because my OCD flares when I am inpatient. I can control so little about the situation, that being able to control my clothes is helpful. It also feels more relaxing and simulates the feeling of comfort I receive at home.

Purchased on Amazon (see hyperlink)

Next, when I am in the hospital I always want my heated blanket. I am unreasonably cold all the time due to my adrenal failure, so the freezing hospital rooms are very harsh. It also helps relieve some of my pain, by relaxing my muscles. The blanket helps bring a pop of color to the room and allows it to not feel so white-washed. The particular blanket I purchased is great because it doubles as a wearable cape. There is a large slit in the center of the fabric that allows you to drape it around your body. I highly recommend it!

Eye-mask and earplugs.

Sleep can be difficult to obtain during a hospital stay. With nurses interrupting it to get vitals and doctors coming in early in the morning, it can be challenging to get restful sleep. I help combat this with earplugs and an eye-mask. The eye-mask allows me to sleep during the day if nighttime rest was unsuccessful and the earplugs are useful all the time, especially with beeping monitors, loud patients, and overhead alerts.

For entertainment I bring a selection of books (this time a comic book), magazines, and playing cards. It can be lonely in a hospital room so having things to do by yourself is super important. I love to learn new Solitaire games. Did you know there was more than just one way to play? In fact, there is over 1,000 known variations!

Ways to entertain myself in the hospital.

I hope you never have a hospital stay, but if you do, these items can greatly improve your stay! Comment with what you bring that helps you the most!

Women in pain.

UAB ER (Current admission), 2019

Welcome to Chronically Juliann! I use this handle because I suffer from multiple chronic conditions, some of which interact and interfere with the others. Stress absolutely makes my adrenal failure worse, and therefore more dangerous. But bipolar disorder is stress inducing. As is colitis, which can flare without warning. Any one of these diseases can land me in the hospital, but when they work against each other it becomes clear that I will require a long hospitalization.

Current admission UAB, 2019

I am currently admitted to UAB for a myriad of symptoms and a cocktail of issues: Abdominal pain, check! Stomal swelling, check! Rectal bleeding, check! Low immune response, check! Tachycardia, check!

While I am grateful to be admitted and receiving IV fluids, pain medication, and frequent vitals checks, it is unbelievably stressful and aggravating to be here again. I feel like the doctors do not listen to me or take my opinion into consideration. I began to get scared and feel terribly bad for the patients that can’t advocate for themselves because they don’t have a medical background. Then I realized they may have an advantage, because when I speak medical jargon and specify names of sensitive tests, I truly believe the doctors think I google symptoms and webmd info to “get what I want.” When in actuality, I have worked in the medical field for 8 years and have suffered from chronic illness for almost 15 years. Therefore, my knowledge is from a lived experience and high level training.

Also, I watch the doctors (especially male doctors) take my husband’s opinion more seriously than my own. I can tell them about my pain and bleeding and they don’t seem to care, or come up with a plan to evaluate. But when Will mentions the same issues, suddenly new tests are ordered or consultations for different doctors are finally being placed.

I decided to look into this more and found some disturbing statistics. Consider this: women in pain are much more likely than men to receive prescriptions for sedatives, rather than pain medication, for their ailments. For example, women who received coronary bypass surgery were only half as likely to be prescribed painkillers, as compared to men who had undergone the same procedure. We women wait an average of 65 minutes before receiving an analgesic for acute abdominal pain in the ER in the United States, while men wait only 49 minutes. In regards to the issue of chronic pain, women account for 70% of the people diagnosed, and yet, 80% of pain studies are conducted on male mice or human men. One of the few studies to research gender differences in the experience of pain found that women tend to feel it more of the time and more intensely than men. The exact reason for this is still unknown, and more studies are warranted. However, as previously noted, research on female pain remains limited and therefore likely will not be completed.

Research indicates we are not listened to and feel our needs are subordinate to that of the “system” (which includes the insurance companies and hospital administrators.) It is increasingly apparent that hospital staff (nurses and doctors) are unable to be sufficiently patient focused because they are beholden more to shareholders and administrators than they are to their patients. This may not be a fault of the individual, but rather a systemic problem that is perpetuated by profit margins and lobbyists. However, it is the patient that suffers because of it.

While this all feels seriously discouraging, I am going to continue to advocate for myself. As stated in my previous blogs, I as a patient know more about my body than physicians. Today when my team of doctors come in to round, I am going to be firm in expressing my concerns and desires. I want to know where my bleeding is coming from. And I would like my pain better controlled. Not because I am hysterical, but because I am experiencing real pain.

DCH ER (previous admission), 2018

The long journey home.

After 20 days in the hospital, I am finally home. I have mostly been sleeping, since sleep in a hospital is rare and interrupted. At least four times a night a nurse or patient care tech [PCT] comes in to give medicines or check vitals. Plus mid-morning (aka 3am) blood draws makes it impossible to sleep through the night. It feels counterintuitive to healing, since sleep and rest are so important to the body restoring itself. But I also understand the need for consistent, continuous data. It’s strange, but I actually have found myself waking up and needing breakfast at 6am, just like while I was hospitalized. I’ve fought my body to just keep laying there, with no success. I guess I developed a habit.

While in the hospital I had a slew of medications added to try and slow down the output from my ostomy. On my worst day I emptied my bag enough to amount to 9L! A normal ostomy should only put out 500mL-1L per day. A “high-output ostomy” as defined as anything greater than 1L… so 9L is very dangerous. My blood pressure was unstable every time I stood, at worst dropping to 77/40. It took continuous fluids to keep me hydrated. It took well over a week to have any improvement at all. After two things started to improve and I had closer to 4L of output daily. At discharge it was still over 3L, which would be out of control for most ostomates, but the doctors all believe this is my new “normal.”

Some of the daily medicines I am using to slow my output include Lomotil, Imodium, and Octreotide. They are all anti-movement agents in the GI tract. Octreotide is an injectable medication that has to be administered three times a day. While it is painful, and mildly frustrating, to receive it so often it has really helped in slowing my motility.

I also have home health now that administers fluids via a mediport. The port was placed on 7/23/19 and has been life changing! No more fruitless IV sticks, no peripheral blood draws, just accessing my port. It is painful when it is originally accessed (which has to be done weekly while receiving medicines) kind of like a swift kick to the chest. But once the needle is inserted there is no pain. And no limit to what can be given/how much blood can be taken. The fluid infusions do take quite a bit of time, requiring at least eight hours of stationary activity to complete. I require the infusions twice a week at this point, but as the output lessens I won’t need as much help.

I received my medical alert bracelet today and I really love it. It is delicate and dainty, but still provides all the necessary information. While I would prefer not to be suffering from a life threatening condition, it is great that there is some joy in the process. I love jewelry, so I searched for a long time to find the right manufacturer to complete my order. I ended up using CodeBlueJewelry on Etsy. They have an assortment of options and even the alert sign/font are customizable. I would recommend them to you if you are in need of a med alert bracelet.

I had my first follow up doctors appointment, with about six others scheduled in the next three weeks. It was with my colorectal surgeon who completed my ileostomy. We discussed options for my rectal pain and bleeding. Her recommendation was to remove the rectum when I am more stable/healed from this long hospital admission. She explained the scope of the surgery and the recovery process, plus the risks and ramifications, in great detail! So much so that I am hoping not to have the procedure and that the high doses of steroids I am on will heal the problem. This thought may be a long shot, however, since my last sigmoidoscopy showed inflammation despite medication. It makes me nervous to think about going into another surgery. The long recovery and high amount of pain are the main deterrents.

The appointment and travel took about four hours total. By the time I got home I was so exhausted I had to sleep immediately. I ended up sleeping for the same length of time as the appointment process! I am now still resting, although I was able to complete a load of dishes and switch the laundry. While that does not sound like a huge undertaking for a normal day, it was massive to me since I am still weak. I am grateful for this period of rest, but am frustrated by the length of time it will take to regain my strength.

Overall, I am improving. And I now have more tools to use to help in that process. But the journey will be long. With what feels like a marathon of a hospital stay behind me, I know it is only up from here.

Day 16 in the hospital.

As mentioned in the “my history” post, I am currently on my third week in the hospital. While I did have a short reprieve (I was discharged for less than 48 hours), laying in a hospital bed for nearly 16 days now has inspired me to continue blogging. I hope the information I share helps you understand the life of a #spoonie.

On my fourth day of admission (07/15) I had a flexible sigmoidoscopy completed to determine the etiology of my recent rectal pain and bleeding. “Fortunately” it was normal. I say that in quotation marks because while it’s a positive there’s no acute infection or disease process requiring immediate surgery, the negativeness of it means that more testing will be required. It also results in some doctors disregarding your symptoms entirely. While my core team of inpatient physicians have been thoughtful and dedicated to finding an answer, one of the consulted fellows spoke to me and my husband condescendingly and implied a normal exam meant I wasn’t actually in pain. He belittled me and insulted me, by claiming I had limited medical knowledge and therefore probably wasn’t as sick as I felt. This frustrated me on a multitude of levels.

First, I am a professional medical scribe with a vast working knowledge of medical terminology and treatment guidelines. Next, as a former nursing assistant I gained hands-on experience in healthcare and learned that a negative result does not mean you stop looking for an answer. Even greater than that, I hold a masters in medical anthropology meaning I have become an expert on some facets of chronic illness. Lastly, and I would say most importantly, as a patient for 15 years I have developed a strong grasp of GI terms and treatments. I know my body better than any other person, and can intelligently verbalize my symptoms. As a healthcare professional, I was bothered he dismissed my knowledge – but I was most offended as a well informed, chronically ill patient. I became sickened by the thought that patients without those backgrounds may be completely discouraged by a doctor like that and stop looking for a diagnosis. (I have so much more I could say on this subject, but I want to stay on topic. Look forward to a future post speaking directly on this issue soon!)

So, as I was saying, my negative flex sigmoidoscopy last week sent the doctors back to the drawing board. And quite frankly, it was a good thing they had to keep searching, or else they would likely not have discovered I have adrenal gland insufficiency (a potentially life-threatening problem.) I am happy to say I am now receiving proper treatment for the hypocortisolism!

As for the rectal pain/bleeding, high ostomy output, and abnormal vital signs that put me in the hospital originally… we are still no where closer to a diagnosis. So tonight I am NPO to prepare me for a series of tests tomorrow. First, a repeat flex sigmoidoscopy with the intention of obtaining different biopsies. Second, an ileoscopy, which is essentially the same thing just the camera is entered through my stoma. Lastly, an EGD where the camera evaluates the lining of the esophagus, stomach, and first part of the small intestine. With all three happening simultaneously, there won’t be a part of my GI tract unexamined.

The doctors hope to confirm a diagnosis of celiac disease with a biopsy, since my blood test was inconclusive. I am still waiting on the results of ACTH Stimulation Test to better understand the cause of my adrenal gland insufficiency. A number of tests are being done on my ostomy output, which the attending physician said are rare. But since my case doesn’t fit a common presentation, are warranted.

Just prior to midnight I finished drinking the bowel prep for the procedures and now am NPO [nothing by mouth] until the tests are complete. I will require conscious sedation and will likely remain sleepy most of the day.

Frustratingly, the biopsy results won’t result until early next week. So it will remain a waiting game. Until then, the doctors will continue to adjust my 20 different medications to achieve homeostasis and treat my pain. I should also have a consultation with my former surgeon about surgical interventions (including anastomosis or proctectomy.)

In the mean time, I desperately need an entertaining show to stream while I’m cooped up! Drop a comment with a show or movie that you recommend.