"Do You Have Diabetes?"

1

This has been happening a lot lately.

Because I'm shadowing doctors in a hospital, I get the question "do you have diabetes?" about once a day for various reasons. Mostly it happens when I tell people I want to be a pediatric endocrinologist--like that's the only reason endocrinology would interest me.

Because I'm very open in general--but especially about my health (for educational purposes), I always say yes. The next question usually is "oh, are you type 1?"

I can't say why this upsets me so much. Maybe it's because something's bothering me about the diagnosis of insulin resistance. Maybe it's because it doesn't look like I'll be tested for MODY, after all. Maybe it's because I've had two endocrinologists tell me that it sounds more like LADA than anything else in the last two weeks. Maybe it's because I'm fed up with not knowing. Maybe it's because there's a nagging voice in my head that insists that this is autoimmune because it fits my overall "pattern" very well.

Today, when I said no, someone asked me "how could you not be type 1?"

I handled the question well (I think). I told her that some of my blood tests indicate T2, that my history indicates something more like slow-onset T1, and that my family history sounds more like MODY. She didn't push after that, but now I can't help but wonder whether I'll ever get this sorted out.

Every diagnosis I've had (except maybe Hashimoto's) has been a fight. For some things it took years to get diagnosed correctly, sometimes after a series of misdiagnoses. The "I don't know" feeling, in my opinion, is worse than the diagnosis itself. And it's funny--the minute I have a name, especially if it seems like it explains things--I stop obsessing over things like this. It's like as soon as I know what's going on, I just take it in stride, add it to my (ever-growing) list, and just move on.

I'm seeing my endocrinologist tomorrow. I will ask for a repeat of the antibody tests and I will make sure he tests me for all antibodies, not just the GAD 65 and the ICA. I want this figured out, sorted out, and put back into perspective as soon as can be.

2

I think this makes perfect sense. I totally understand wanting an actual, firm diagnosis of medical conditions. I've had doctors diagnose me with things I was sure I didn't have, and also not diagnose me with things I was sure I had.

When I was around 25 I was diagnosed with high blood pressure. This, and the resulting ARB I was prescribed, seriously bothered me for YEARS. I tried to stop taking the medication, but then literally got lectures from my (former) GP about how I would end up in kidney failure in five years if I didn't take the medication. But the diagnosis did not fit with any of my history, and the idea that I had high blood pressure JUST because of diabetes didn't sit right with me, either. Then, five years later two different specialists told me that I didn't have high blood pressure—just white coat hypertension. I suddenly felt a huge sense of vindication about how I'd been feeling for the past five years!

I saw an allergist for the first time in my life in my mid-20s who acted like I was completely over-reacting when I asked for a prescription for an epi-pen. He refused to prescribe one even after multiple requests. This despite my skin test result for the food in question being "pretty strong" (his words), a history of systemic reactions that match descriptions of anaphylaxis, and the fact that I had an epi-pen when I was younger. Based on everything I've read I believe my allergy is anaphylactic—but I've never had a doctor TELL me so (although my current GP agreed I need an epi-pen), and that has always bothered me when people ask me "how bad" my allergy is. I had a pretty bad reaction a few weeks ago where I nearly called 911 (and should have called), and after that I've decided that I don't care what any allergist thinks. Next time I will go to the hospital for safety, but also to get a doctor to see the reaction and give me an actual, proper diagnosis.

I think sometimes we understand our bodies intuitively better than doctors do. This is disturbing because it can lead to the wrong treatment. Hopefully, at some point your test results will point definitively towards one type of diabetes or the other.

3

We could be twins!

I tested GAD and ICA and came up negative. I have Hashimoto's (apparently my thyroid is very resilient, because my antibodies are sky-high and my thyroid is still plugging away), and allergies (LOTS!). I also have joint pain, among other things, which is being called fibromyalgia for now (my rheum said there's a good chance it's early Lupus or Sjogrens). My mother had psoriasis, my father has vitiligo. I have the autoimmune history, personal and otherwise.

At the moment, I take Metformin. I think I'd hate that less if I agreed with the diagnosis.

4

Hi Guitarnut: Me, I like to know what beast I am dealing with. I would be very frustrated in your situation. Here's some info that I provided to AliciaM that you might find interesting: Anne L. Peters MD discusses Lean Adults With New Diabetes in this video. Dr. Peters says, "Not everybody who has adult-onset type 1 diabetes will have a measureable antibody. Some won't but might appear to me to behave so much like a patient with type 1 diabetes that I will still call it adult-onset type 1 diabetes.

The reason that it is so important to differentiate between the types of diabetes is that although initially these patients may respond to oral agents because they still have some residual insulin secretion, they are going to progress much more quickly to needing insulin (usually either a multiple daily insulin regimen or an insulin pump) and they will begin to look more and more like a patient with type 1 diabetes. I tend to put these patients on basal insulin sooner, often they will need mealtime insulin to be added relatively early in the course of their disease, and I will discuss with them what it means to have adult-onset type 1 diabetes."

5

I guess you have to be prepared if you answer the question as you want to be a pediatric endocrinologist that is going to be the response you get.

Maybe answer it a bit differently. Like – I am thinking of a pediatric nephrology or endocrinology.

I can kid of see why you might feel awkward. I don’t know how old you are, but the prevalence of type 2 diabetes in people under 20 is only like 1 in 1000, so that might be part of why people respond the way they do.

What kind of program are you shadowing doctors for? Just out of curiosity ?

6

Jen:

Do you monitor your own BP now? I just had the same issue; always reading high while at the doctors office. I was put on BP meds about 5 years ago. The last visit to my OBGYN my BP was higher than usual and they suggested I buy a good quality cuff to check and get back to them if the numbers kept climbing. I found out that my BP was actually danagerously low on the medication, and I was close to passing out many times. I am off the medication now and feel much better.

Sue

7

I do monitor mine at home which is why the diagnosis disturbed me so much. I think I am very sensitive to stress, so I still got some high readings at home when I was stressed (I had a stressful job at the time), but other times they were normal.

Ironically, I'm on a very low dose of a BP medication (beta blocker) right now for issues related to my heart rate. But I'm seeing a cardiologist and he plus my new endocrinologist plus an internist I saw a few times all say I do not have high blood pressure.

My blood pressure right now runs around 115/75 or so while I'm at home, and at the doctor's office I get readings of about 140/90. Much better than before when I was stressing, but not having doctors push medication on me in itself is less stressful.

When I am really stressed I have had readings as high as 200/110, which is a massive difference from my usual. I've also had readings as low as 90/60 that almost caused me to pass out, possibly caused by medication.