The bad, the good, and the confusing

I called MY endocrinologist’s office this morning at 10:15 to get clarification on the test results.

At 1:30 I called back again, and stated that I would like to be called back – even it if it was just to say they are working on it.

At 2:45 I called the appoinment line because I knew I would be able to speak to a “live” person. She transferred me back to the same message system I had left two messages with already.

I called back and said that I would like to stay on hold until I could talk to a person. I stayed on hold for 20 minutes and then they said that someone would call me back. I told them that I had already left two messages that morning.

The receptionist responds, “well, the phone message says we guarantee a call back in 48 hours.”

Which is great (I mean it’s not) but also… it doesn’t.

What it actually says is that if you call after 4 pm your call will be returned the next day.

She finally decided that she needed to transfer me to the research facility. She actually transfered me to the doctor’s office affiliated with the facility. That receptionist listened to the whole story and promised that she would call me back by the end of the day.

At 3:59, the research coordinator that started this whole nonsense called me back.

She said she talked to the doctor (which is great since I haven’t yet been able to) and he has no idea what could have caused my odd lab work. Since they don’t know, they want me to repeat the labs in the morning (Tuesday).

She asked if I had received my copy of the lab work. I told her I had not – that the only information I had was the information from her on Friday afternoon. I told her it has been incredibly frustrating to have just enough information to worry about and not enough information to do anything with it.

Along with the worry and anxiety, I keep thinking about the fact that at least I know how to advocate for myself. I can’t imagine what is happening to patients who don’t know how to speak up for themselves.

I mentioned a while back, that I was taking the steps necessary to enroll in a research study connected with my endocrinologist’s practice. The title of the study is a long one “ASPIRE (Automation to Stimulate Pancreatic Insulin Response): Pivotal In Home study to determine safety and efficacy of the LGS feature in sensor-augmented pumps.”

On Tuesday I completed the screening and informed consent appointment. This involved reading and completing the 18 page information and consent form. I still want to write more about that because I don’t think it’s often that we experience the opportunity to participate in research and it is an interesting process, but that’s not where my brain is at right now.

My brain right now is focused on the results of the lab work. The primary objective of the lab work was to ensure a negative stimulated c-peptide result. Study participants also had to have an A1c between 5.8% and 10.0%. There was a full-page list of items that would exclude a participant from the study.

I left the appointment with a second appointment scheduled for Monday pending my lab results. I had not heard anything from the office, so I called this morning to find out the next step. The study coordinator called me back after lunch, and that’s where things get messy.

First of all, I did not meet the inclusion criteria for the study based on my A1c results. I am not sure how accurate the A1c results were based on the fact that I had donated blood two weeks prior. It is what it is.

Then the study coordinator shared additional lab results with me that make absolutely ZERO sense on the lab report. Results that need to be interpreted by a doctor to provide clarification. Results that could mean absolutely nothing and are nothing more than a fluke. Results that could point to very early evidence of a diabetes complication. Or results that could be very scary.

I don’t know what the results mean because by the time the coordinator called me back, all of the doctors had left for the day. She could not have a doctor talk to me, send me the results, send the results to my doctor, or do anything else without the signature of the investigator and again, he was gone for the day.

The more that I think about it, the more I find it completely ridiculous that this so-called research institute would be so irresponsible. It makes me angry that they would mention results that they have no idea how to interpret like they are no big deal and leave me with the weekend to worry (and google) about what they mean.

It makes me angry that a study coordinator with absolutely no medical training would be allowed to share results with a patient if that coordinator does not have enough medical knowledge to interpret the results. The same study coordinator that was already on my bad side for commenting that I was taking “a lot of insulin” for the nutritional supplement that was used during the lab (1 unit for every 8 carbs in the mornings, not that it is anyone’s business but also not “a lot of insulin”).

So, that’s the bad and confusing news from today. I am trying to find the bright side – the moments of wonderful (*rim shot*). The good news is that even with a margin of error, I have an A1c that I am satisfied with and also that now I have the opportunity to participate in other research projects. Had I met the criteria for this study I would not have had the opportunity to try the mySentry. Now that decision is back on the table. Maybe worrying about that decision will keep my mind off worrying about these stupid labs.

Yeah, not likely.


  • OK, you just made me feel completely normal. I am waiting on my doctors to talk to me about the findings of other doctors lab test. Those doctors didn’t explain anything to me so I am left Googling really scary conditions that I’m not even sure I have and thinking I’m an obsessive compulsive hypochondriac. But let’s face it, when you hear bad news often enough you begin to expect it. Hope all is well with you and Dr. Google is once again way off base.

  • You are right, I don’t use much insulin (in my opinion), and my carb ratio in the AM is I unit for 8 grams.

    One time I was telling a nurse in a hospital (I wasn’t there for anything diabetes related) that I was pretty strict on my carbs to keep my control better. She kind of smirked and said well, your A1C isn’t even that low, it’s 6.8. I was pretty annoyed that a non-diabetic specialist was applying their tiny amount of understanding to my situation.
    Anyway, I totally get how frustrated you are having “some” information but, no real help.

  • MY morning carb ratio? 1:5! yeah, woah nellie! yet my ratio is 1/3 less the rest of the day. go figure. But who is to say what “too much” insulin is?!
    sounds like a big pile of bullsh*t. Don’t fret over the weekend. Judging by how nonchalant and lazy they are being, perhaps they warned you prematurely.
    Stay positive!

  • Sara… considering the lack of consideration in their disclosure of your results, I’m thinking it might be a good thing that you didn’t meet the criteria for the study. Maybe they don’t meet your criteria for the study? The way this was handled, in my opinion (which doesn’t account for much), is criminal. They shouldn’t be allowing access to your test results to someone with no authority to share what they mean. Assuming this person even knows what they mean. Good luck with the MySentry if you decide to give it a go.

  • This truly bothers me. And I want to know more. I want to know how this happens. If other research facilities and trial locations do this type of thing. It enrages me vicariously… and is a little personally concerning in that I’m about to do a go-around with my own local university lab for a clinical trial that requires lab result interpretation. Now, these are labs that my endo has already seen and interpreted for me… but still. I’m curious to see if it plays out as it has for you. And I’m going to start investigating this more broadly…

    Hoping the best for you, now that the weekend’s coming to a close. Hope the lab results aren’t the scary realities. Best to you, my friend.

  • That sounds weird. One time I applied for life insurance and they sent me a denial due to “diabetes and end-stage organ disease.” I called them to find out what possible test results could have led them to believe I have end-stage organ disease, but they refused to give me any further information. I just think that kind of thing is so unethical.

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