For at least three months I had an insatiable thirst and dry mouth. Despite the gallons of water I was drinking on a daily basis, my thirst could not be quenched. Even with its five-star review on Amazon, Biotene mouthwash proved futile in alleviating my dry mouth. Other maladies included: frequent urination, losing about 20lbs, flushed face, overall weakness, and tiredness. I attributed all of this to me just acclimating to North Carolina, as I had just moved from Michigan a few months prior.
A quick google search of these symptoms returns a diagnosis of diabetes. My fiancé had done this and suggested that I might have diabetes. I laughed it off because I tend to associate online self-diagnosis with hypochondriacs- people who, after searching for an explanation for their headache on WebMD, are suddenly dying of cancer. Plus, diabetes seemed an unlikely explanation considering I exercise, eat well, and have no family history of the disease. But my symptoms matched, which lead me to the ultimate test—measuring my blood glucose concentration. This can be done by purchasing a glucometer at a pharmacy. So I went to a Rite Aid after dinner one night and purchased a glucometer. I figured the box would contain everything I needed, but it lacked the glucose test strips (which cost ~1.30$ each). It was already late (~11:30pm) so I went to sleep and planned to try again tomorrow. On my way to work the following morning, I stopped at a CVS to buy some glucose test strips. You have to buy strips specifically made for your glucometer. In the glucometer aisle I could not find any test strips, but did find the glucometer I had purchased the night before with 10 “free” test strips included. So I repurchased the meter just so I could get the test strips. Little did I know at the time that the test strips are sold behind the counter in the pharmacy. I went to my car and tested my blood glucose. The glucometer read 420 mg/dL (milligrams per deciliter) so I googled the normal range (80-120 mg/dL). Also I picked up ketone test strips while at CVS. When your cells can’t absorb glucose because you have no/low insulin, the cells start to metabolize fats and proteins, the products of which are ketones. Thus, the presence of ketones in the urine can be measure of a diabetic state. A high blood ketone level is dangerous. Ketones are a weak acid (pKa ~4) and lower the pH of your blood leading to changes in protein structure and hence function. This is called diabetic ketoacidosis (DKA). The symptoms include nausea, vomiting, fatigue, confusion, difficulty breathing, and can escalate into a diabetic coma. The internet said if high blood glucose and high urine ketone levels I should go to the emergency room (see figure). I called my sister, who is a nurse, to confirm this course of action. She indeed did, and I drove to the nearest ED (emergency department) (what they call it now-a-days).
I went to WakeMed Emergency services on April 5th 2016. Upon admittance to the ED, point of care blood glucose taken and measured to be 377 mg/dL. I was then hooked up to an IV for hydration. Blood was also drawn for labs. A test of ketones within the urine would reveal a measure of 4+ (no units, but apparently this is the highest number on their scale). The lab results were never shown or discussed with me, even after asking the nurse if I could see them he told me in his shitty little southern accent they would be online in “my chart” (two days later the results would appear online).
Katherine was the PA seeing me and after some reflection on my visit I think she needs training in the diabetes field. She is a nice and personable women but the way she handed my situation is alarming. Furthermore, her ability to communicate medical-related information is poor. For instance, when asked what was in the IV drip bag she responded “Fluid”. I responded with confusion: “Fluid?” hoping to get a little bit more information but all I got in response was “Yes, fluid”. This is of course an absurd response, it’s like saying the bag is filled with liquid. Even more her descriptions of Type I and II diabetes seemed opposite of what I had just read while waiting (ketones in the urine is more common in type 1 diabetes-ADA). Which leads me to her diagnosis: she suggested I had Type II diabetes and that I should take metformin (oral pill). What evidence she used to come to this conclusion is a mystery. She also told me that if any doctor tries to give me insulin that I should go to a different doctor because that is the last thing I should do. This statement is the complete opposite of what I needed at that time. She was dangerously wrong.
Apparently confident in her diagnosis, she allowed for my discharge with a blood glucose level of 283 mg/dL and 4+ ketones (see image for ketone level accessed in bathroom after being discharged). Katherine’s incompetence should have been caught by the MD in charge. I did not talk to a MD while in the ED but according to” MyChart” (online records) the doctors who share responsible for this dangerous misdiagnosis are Toni and Eduardo. Their lack of oversight cannot be explained away by being too busy as the ED was almost vacant during my stay.
The following day I met with my primary care doctor, not an MD but a nurse practitioner (NP). My fasting blood glucose was in the 300s mg/dL and I still had ketones in my urine. They also drew blood for labs and he informed me that I did have diabetes and that the symptoms are more consistent with type 1. But he said I need to see an endocrinologist so they can diagnose me. So he gave me a referral to an endocrinologist. I met with the lady who does the referrals and the quickest one she could get me was 34 days away. However, I had to take a diabetes class and she could get me in the next day.
In conclusion, my NP thought that I didn’t have type II, but still kept me on a prescription specifically for type II diabetes, in fact he increased my prescription two-fold. Metformin does nothing for a person with type 1 and in fact can have side effects. Additionally, he had evidence that my blood glucose concentration was high for at least 2 months because my A1C level was off the charts. I remember this specifically because he told me that my A1C was at least 14. I asked 14 what? He said that’s a good question let me look. It’s percent. This means at least 14% of my hemoglobin was glycosylated. He also knew that my ketones levels in my piss were still high too. So what did he do, pass me off to the referral lady to make an appointment 34 days away. If he cared for my health he would have tried everything he could to get me in as soon as possible to the endo and/or told me to go the emergency room. There is one other option, he is incompetent.
The diabetes class was at the endocrinologist and I figured it would be filled with 20 people and include vague statements about diabetes. However, it was a one-on-one meeting with a RN, and when I arrived she informed me that she told the doctors that I need to be seen immediately. She had reviewed my labs and decided I needed medical attention immediately. They also took my blood glucose (~300 mg/dL). Two doctors came in and told me to go to the emergency room immediately and that they will admit me for monitoring because I was in DKA. They also informed me that I did indeed have type I diabetes and that I need insulin. So they gave me a shot of ten units of Humolog (fast-acting insulin). For some reason doctors and nurses like to call the insulin by the trade/brand name, which just confuses new patients because there are multiple companies. The doctors told me to go to Duke University hospital and that I cannot drive myself. One endocrinologist told me she called ahead to the endo team there and told them the story and that I would meet with some of them. This would turn out not to be true. Luckily I had a friend visiting who could drive me. The doctors seemed pretty concerned that in my previous visits with health professionals they did not take the correct course of action.
At the ED I was set up in a room and hooked up to an IV. My friend stayed with me, so despite waiting about three hours for a doctor to see us I had company. We saw one doctor doing her residency, the emergency room doctor, and then two doctors from internal medicine. After nearly five hours and four doctors using their stethoscopes to listen to my heart and lungs, I was admitted into the hospital. The time was probably around 8pm, and I had not eaten since about 11am. Combined with 10 units of fast acting insulin my blood glucose dropped to 74 mg/dL. I asked the nurse if I could eat and she said yes. So my buddy got us veggie foot-longs from subway, which was in the hospital. Before eating I told the nurse that I would be needing an insulin shot. About an hour later my blood glucose was taken and was still high so an additional two units was administered via syringe injection into my subcutaneous fat layer. Blood glucose measurements would be taken every hour throughout the night until 5am, when it stabilized. This is important to assess my response to insulin, as too much insulin can lead to hypoglycemic state and passing out. At 6am I awoke to Dr. Blood’s cold beady eyes. He wanted a listen.
The next day in the hospital came with a new nurse. She apparently was the diabetes specialist among the nurses, as told to me later by one of her colleagues. This was a surprise to me as I had to call her three times: to take my blood glucose before my meal, to take insulin before my meal, and to take my blood glucose two hours after my meal. She did not tell me to do any of this I had just read it in the book they gave me. Which suggests a less competent person would have done none of the above and continued with chronic high blood glucose in a hospital setting-what a joke. Sure my nurse may have been really busy and forgot to relay this info to me, but given that she told me the most banal anecdote about her friend who was low (hypoglycemic state) and ran a stop sign on a bike in front of a cop, so that he could get to his glucose tablets quicker, suggests otherwise (not to mention her telling me about the little kid movie Frozen).
After meeting with another diabetes teacher and eating lunch I was able to leave. I headed to a Walgreens pharmacy to pick up my prescriptions, which included long-acting insulin (Tujeo)) to be taken every night before I go to sleep, fast-acting insulin (Novolog) to be taken before every meal, emergency glucagon to be administered by someone who finds me passed out, needles, alcoholic wipes, lancets, and glucose test strips. A two-month supply of insulin costs me $40, however without insurance it would have cost $900.
With my prescriptions in hand, I started my new life of at least four injections a day and constant blood glucose monitoring. This may sound depressing but I feel much better compared to how I was feeling the previous three months before insulin treatment. My energy and thirst returned back to normal. I was seriously addicted to water; the first drink was always so pleasurable. It reminded me of what this comedian once said, and I’m paraphrasing: I feel bad for people who aren’t addicts because they will never know the joy of getting something you crave over and over again. Additionally, reducing life to small pragmatic problems, like how much insulin to inject before each meal, gives me a weird sense of purpose, no matter how trivial.
Although it may seem like I’m just putting people down throughout this piece, probably to make myself feel better, I like to think holding medical professionals to high standards is a good way to select for the best. If you suck at being a medical professional just stop because people’s lives are at stake. The best way to know if you suck is if people tell you. I don’t expect anyone to adhere to this advice but it just feels good to write. I have sent an email compliant to Wake Med describing my experience and calling out the PA and doctors, but all I have received are emails and phone calls asking me to pay my bill (notice not contacting me to see how I am doing). In contrast, Duke has sent me multiple feedback surveys. Since this was my first real interaction with medical professionals I was naive and hesitant to speak up, one reason being out of fear of embarrassing them (i.e. asking a question they didn’t the answer to). After going through this experience I will be more respectfully forthright and I call on you to do the same.
Some interesting facts about Type 1:
-Type 1 diabetes is an autoimmune disease. My immune system is killing my insulin-producing Beta cells, housed within the islet of the pancreas.
-50% of people diagnosed with type 1 are diagnosed after 18. (JDRF)
-80% of people diagnosed with type 1 have no family history. (JDRF)
-Identical twins have identical genes. Yet when one twin has type 1 diabetes, the other gets the disease at most only half the time. (ADA)
-You inherit a predisposition to the disease then something in your environment triggers it. (ADA)
-The environmental trigger(s) is(are) unknown but some hypothesize viruses. (ADA)
-Type 1 diabetes develops more often in winter than summer and is more common in places with cold climates. (ADA)