Hypothyroidism:
In January of 2016 I was able to begin seeing a pain management doctor, Dr. Kochert. She has been nothing short of a saint for me.
As part of our treatment plan from day one we have done quarterly wellness blood draws. These blood draws look at vitamin, nutrient, hormones, etc.
Our first quarterly blood draw was in January of 2016 and except a few vitamin deficiencies, everything came back relatively normal. However, in April, when we did our next blood draw, my thyroid levels came back a little out of whack. This triggered my doctor to question me about the symptoms I was experiencing that may be related to my thyroid… Things like facial hair growth (upper lip), acne, exhaustion, weight gain, etc.
Once we determined that I did have a fair number of hypothyroid symptoms, she put me on a low dose of NP Thyroid.
Over the last couple of years my levels have fluctuated on occasion and we have caught it on our quarterly wellness panel and just adjusted my meds.
Last week (August, 2018) I met with a new endocrinologist, Dr. Waddel, who happily took over treatment of my hypothyroidism and switched me from NP Thyroid to a more natural form of the supplement, Levothyroxine. In the past, none of my physicians have been interested in treating my hypothyroidism except my pain management doctor.
Primary Adrenal Insufficiency
In January of 2016 I was able to begin seeing a pain management doctor, Dr. Kochert. She has been nothing short of a saint for me.
As part of our treatment plan from day one we have done quarterly wellness blood draws. These blood draws look at vitamin, nutrient, hormones, etc.
Our first quarterly blood draw was in January of 2016 and except a few vitamin deficiencies, everything came back relatively normal. However, I had been experiencing issues with falling asleep sitting up at my desk in the middle of a task in the middle of the work day so even though we had just done a quarterly blood draw in April and weren’t due for another until July, we decided to do another blood draw a month early in June to see if may we could catch something on my bloodwork that would explain my symptoms…
Low and behold my cortisol levels were next to nothing. Because this hormone is so very important for life, Dr. Kochert sent me to an endocrinologist, Dr. Oates, for further testing, diagnosis, and treatment. Unfortunately, that doctor was booked out 6 or so months and with the nature of my symptoms I was really concerned I might lose my job or fall asleep behind the wheel… So, I added myself to the waiting list for Dr. Oates and saw her physician’s assistant, Richard Jones.
Unfortunately, when your blood serum levels come back with low cortisol levels, that means that you have to do an adrenal stimulation test. It’s called a stim test because they are stimulating your adrenal glands with synthetic ACTH hormone to see if they can create cortisol on their own.
To help you better understand adrenal stimulation testing and the results that are produced, here is a little bit of background information:
All adrenal testing has to be done between 8 and 9 AM. This is when a normal healthy adrenal gland creating adequate cortisol will peak in cortisol production. A normal healthy pituitary gland creates a hormone called ACTH that then signals your adrenal glands to create cortisol. If your pituitary is creating ACTH as it should or creating more ACTH than it should and sending ACTH to your adrenal glands to trigger the production of cortisol, but your adrenal glands don’t respond like they should and therefore don’t create enough or don’t create any cortisol this is known as primary adrenal insufficiency, or Addison’s Disease. If your pituitary is not functioning properly for whatever reason and therefore is not sending the necessary signal to your adrenal glands, this is known secondary adrenal insufficiency. While primary adrenal insufficiency is known as Addison’s Disease, secondary adrenal insufficiency is not.
During the Adrenal Stimulation Test you will be asked to come in at 8AM. They will draw baseline blood levels as a control (to see where your levels are at prior to being injected with synthetic ACTH). These baseline labs will consist of cortisol and ACTH. Then they will inject you in the arm with synthetic ACTH. This will do one of two things: 1.) signal your adrenal glands to create cortisol, 2.) absolutely nothing. They will then draw blood every 30 minutes for an hour or two (depending on the doctor’s request).
“Normal” ACTH levels are considered anywhere from 10-50 picograms per milliliter (pg/mL). “Normal” cortisol levels are considered anything over 18 micrograms per deciliter (ug/dL) between 8-9AM. If both your cortisol levels and your ACTH levels are lower than normal you are diagnosed with Secondary Adrenal Insufficiency. If your cortisol levels are lower than normal bur your ACTH levels are higher than normal, you are diagnosed with Primary Adrenal Insufficiency.
We ran this test three times with two weeks between each test. Each time my ACTH levels got higher and my cortisol levels got lower. When the results from our final adrenal stim test, my ACTH levels were twice what they should have been and my cortisol levels were next to nothing. I didn’t know it at the time, but this told us that I was heading into a crisis.
Unfortunately, the physician’s assistant didn’t specialize in adrenal insufficiency so when he looked at the results, he didn’t have any idea what he was looking at. He insisted that I had narcolepsy and needed to complete a narcolepsy sleep study. I had heard about the torture that is a narcolepsy sleep study. I had heard that they only allow you to sleep for 20 minute increments every hour or so to see how quickly your body enters REM sleep.
I refused the sleep study and waited to meet with Dr. Oates. I met with Dr Oates on January 11th, 2017. She literally walked in the door and said this:
” HI! My name is Dr. Oates. It’s nice to meet you! You have hypercortisolism. Take these steroids for the rest of your life. 30mgs. Double it if you are ever sick. 100mgs intravenously if you are ever in the hospital. Ok! I will see you in a year!”
We were definitely completely and utterly shocked. We had to stop her and make her slow down and explain to us what the heck was going on.
At this point I had been ill for well over a year and that time and previous diagnosis had taught me not to spend time looking up symptoms on WebMD or Google. That NEVER works out in anyone’s favor. But I did know that my levels were low so I figured that I would treat these low levels like I always had in the past… with a supplement until the level came up and then all would be right in the world.
But after some research, I learned that despite having an ACTH level of 120, Dr. Oates had diagnosed me with Secondary Adrenal Insufficiency. Those with Secondary Adrenal Insufficiency present with lower than normal ACTH levels because their pituitary glands are not working. Normal ranges can vary a little bit from lab to lab, but generally speaking, they tend to be somewhere around those measurements.
When I inquired as to why she had diagnosed me with Secondary Adrenal Insufficiency, she said “You are on fentanyl, correct?” So, essentially, she noticed that I was/am on narcotics and stopped all further testing to see what would have cause my cortisol levels to drop so drastically… whether that would have been caused by my pituitary or my adrenals.
While I was researching Adrenal Insufficiency, I found a dosing schedule called circadian dosing. This dosing mimics (as closely as a possible with pill supplementation can) the way the adrenal glands release cortisol. In the “normal” human body, the adrenal glands start creating cortisol around 4AM and cortisol production peaks around 8-9AM, slowly tapering off through the rest of the day until it’s time for bed. The body is never really completely void of cortisol, but measurements do get pretty minuscule during the late-night hours.
Hydrocortisone has an anti-inflammatory effect in the body for roughly 8 hours. It has a cortisol supplementation effect in the body of roughly 6 hours. Once you take hydrocortisone it will begin breaking down and it will peak in roughly 2 hours (depending on your metabolism). After those two hours, it will continue to supplement your body for the next couple as it slowly decreases in effectiveness. It’s important to take the next dose prior to the previous dose completely leaving the system so that the dose has time to peak. Because of this, those that are on hydrocortisone and following the circadian rhythm dosing model are taking medication every 4 hours (6 times a day).
30mgs of Hydrocortisone broken into 6 doses
4 hours apart:
7:00AM: 13.5mgs
11:00AM: 4.5mgs
3:00PM: 2.5mgs
7:00PM: 2.5mgs
11:00PM: 2.5mgs
3:00AM: 4.5mgs
I found that waking up in the middle of the night (for the 3AM dose) was not beneficial for me unless I was ill (in which case it was absolutely necessary that I woke up to take this dose) because I would wake up to take my medication and then struggle to fall back to sleep. So, I took my hydrocortisone in the following fashion:
30mgs of Hydrocortisone broken into 5 doses
4 hours apart during the daytime hours:
7:00AM: 12.5mgs
11:00AM: 7.5mgs
3:00PM: 5mgs
7:00PM: 2.5mgs
11:00PM 2.5mgs
Not all doctors were supportive of this. A lot of them felt this was overkill. My primary care physician explained that when they write prescriptions, they have to write them in a way that their patients will be compliant a majority of the time and taking medication every 4 hours isn’t exactly something that is easy… especially having to stay up late and wake up early as well as in the middle of the night.
In late April of 2017 we made the 5 hour one way trip to Cleveland Clinic to see Dr. Kennedy and his intern. Because Cleveland Clinic is a teaching hospital, we met with the intern first and she got a thorough medical history and did a thorough exam and then went to debrief Dr. Kennedy before they both came in to discuss possible treatment options.
Dr. Kennedy’s intern felt that my “long term” narcotic use (at this point I had been on narcotics for roughly 9 months) caused the suppression of my pituitary (despite the fact that the symptoms related to Adrenal Insufficiency popped up before I started taking the narcotics…) and wanted me to slowly taper completely off of my steroids and narcotics and remaining off the steroids for 6-9 months to give my body the opportunity to start making it’s own cortisol again before they would rerun the ACTH stimulation test and make sure that the baseline reading of 120 was not a fluke.
This was not only not realistic but also very dangerous. Those with Adrenal Insufficiency are steroid dependent. Taking those steroids away puts them at risk for adrenal crisis. And I was/am on the narcotics because of the excruciating pain my body is in every single day. It got to the point where I couldn’t sit or stand without projectile vomiting due to the pain… I was literally bed bound. It was at that point that my team decided to intervene and put me on a low dose narcotic patch to take the edge off the pain and allow me to try to somewhat function as a human being. Tapering off of either of these medications would also mean losing more of my independence as it would mean being bed bound.
Dr. Kennedy however was not concerned with me tapering completely off my steroids, instead, he was pretty confident that I did in fact have Primary Adrenal Insufficiency. He was even pretty confident that my adrenal failure was caused by and autoimmune disease and for that reason he wanted me to taper down to 20mgs of hydrocortisone a day as he felt that was a more acceptable physiological replacement steroid dose for “normal humans”. He also wanted me to stop circadian dosing and start only dosing twice a day… Once at 7AM and once at 1 or 2PM. He wanted to run several specialized. He wanted to test for autoimmune markers, he wanted to test my hormone levels, and several other specialized tests. For the first time, we were going to have answers! And then the other shoe dropped. He wouldn’t perform the blood tests until I was able to taper down to the 20 milligrams of hydrocortisone and stopped circadian dosing.
Because of my dosing schedule, tapering down also meant stopping doses because each time I cut out a dose, I would cut out a 2.5mg dose. The first dose to go was the 11:00PM dose. I immediately started experiencing low cortisol symptoms (exhaustion, sleeping through my alarms in the morning, increased nausea, etc.). Two weeks later I stopped the 7:00PM dose. I unfortunately did not make it any further because the low cortisol symptoms became unmanageable. I reached out to Dr. Kennedy and his office and explained that I couldn’t continue with the taper and why and unfortunately, I got his intern who responded that I needed to push through the discomfort and continue to taper.
I won’t lie… her response definitely rubbed me the wrong way. I responded to her e-mail and let her know that it was not simply discomfortI was experiencing. That I was experiencing the same symptoms I had experienced prior to diagnosis… extreme nausea despite wearing a scopolamine patch to the point of throwing up, sheer exhaustion, diarrhea, lack of appetite, etc.
She then responded again telling me once again to push through the discomfort and continue with the taper so that we can do the testing and then proceed to taper off the steroids completely to do the adrenal stimulation test again.
As soon as I read that, I knew immediately that was not wise choice for me… so I started taking the two doses that I had tapered off of and cancelled my follow up appointment for 9 months out because no one knows my body better than me… and if a doctor isn’t willing to listen to me… I don’t want them on my team.
Unfortunately, in November of 2017, I started periodically experiencing the same symptoms (falling asleep while working, increased nausea severity, etc.) I was experiencing prior to diagnosis despite being on 30mgs of hydrocortisone and following the circadian dosing model. As the months went on, I started experiencing these symptoms more and more. In February 2018 it became so frequent that I couldn’t put off addressing it anymore.
I called my doctor’s office after struggling to keep my eyes open during a heated meeting which is not like me at all. The doctor’s office was immediately concerned, but Dr. Oates was out of the office on medical leave so they scheduled me to see another doctor in the office, Dr. Edem that very same day.
When Dr. Edem walked in the room, he immediately gave off this dismissive… “I have better things to do” vibe and that is essentially how the entire appointment went. He would ask questions about my medical history and halfway through my first sentence he would cut me off and dismiss me.
About halfway through the appointment we explained that we thought that the issues I was experiencing were caused by issues with absorbing the meds due to issues with my stomach and he completely blew me off. He literally said “In all of my career, I have only had 1 person with absorption issues. They are very rare. It’s not likely you have them. If you did end up having absorption issues, you would live a very miserable life because we can only treat orally with steroid pills.” I was blown away at how rude and dismissive he was being. By the end of the appointment I was just staring at the floor trying not to cry while my dad tried to advocate for me.
The appointment resulted in changing my medication from 30mgs of hydrocortisone to 7mgs of prednisone. He instructed me to take 5mgs at 6:30AM and 2mgs at 2:30PM. I noticed an immediate change and it wasn’t a good one. I immediately started dropping weight. I immediately started sleeping through my medication alarms to the point where my 6:30 medication alarm would still be going off when my dad came in an hour later to wake me up because I had over slept.
After doing some research I found that 1mg of prednisone is equivalent to 4mgs of hydrocortisone. I where I wasn’t getting enough cortisol on 30mgs of hydrocortisone before I should have been on at least 7.5mgs of prednisone. I also learned that prednisone has an anti-inflammatory effect in the body for 12 hours, but only supplements cortisol for 8 or so hours. This means that because I was taking my last dose of prednisone at 2:30PM, when the prednisone cleared my body at 10:30PM, my body had no cortisol for the next 8 hours (10:30PM until 6:30AM)… which explains why I was struggling to pull myself out of the haze of sleep.
I e-mailed him to ask about increasing my dose and taking it three times a day instead of two and in said that it was not necessary to do either. He actually said “it will cause you to get fatter than you already are and that is not something we want now is it?”
Needless to say, I was hurt and frustrated.
I then reached out to my primary care physician, Dr. Cooper and explained what was going on and a requested a referral to a new endocrinologist. She happily obliged.
Last week (August 2018) I met with Dr. Waddel. He reviewed my medical history prior to my arrival and when he asked questions he waited for me to finish answering before he asked another question instead of interrupting or cutting me off. He also heard me out when I told him that I was being tested gastroparesis and may have malabsorption issues. He said that there were easy blood tests that we could run to make sure that I am getting enough cortisol from the steroids…and then he ordered those tests and low and behold… the results came back showing that I am not getting enough steroids so we increased my steroid prednisone dosage. AND when I mentioned taking my meds three times a day (circadian dosing) he was completely supportive!
Anhidrosis
Shortly after my Primary Adrenal Insufficiency diagnosis, I stopped sweating.
No, you didn’t read that wrong.
Yes, I stopped sweating.
I know that sounds awesome initially… but it’s really not. Sweating is what gives your body the ability to regulate its own temperature. What gives your body the ability to cool itself down on hot days. Without the ability to sweat… you become heat intolerant VERY quickly.
What is even more frustrating is that I don’t realize that I am becoming overheated… I don’t necessarily feel hot… I just start feeling sick. My head starts pounding, I become more nauseous than normal, more dizzy than normal, etc. and that is become I am entering heat exhaustion.
Unfortunately, I have not had a doctor that has been able to tell me what caused the Anhidrosis or attempt to help us in managing it. We simply carry water spritzer fans with us if we know we are going to be outside for long periods of time on hot days and aren’t going to be around a pool/lake/ocean (for instance when we went to Disney).
Bumpy Back Roads 