History: I was born with something called congenital hyperinsulinism, a condition that causes the pancreas to over-secrete insulin. For most of my life, I took a medication called diazoxide to keep my blood sugars above 70 and in the normal range. I was always told growing up that I would be at a much increased risk for developing diabetes. All throughout my childhood and early adulthood, my BSL rarely was above 100 (even after a HUGE) meal.
I am now 32 and recently went to an endo for the first time in, well, a long time. He basically said I am probably “pre-diabetes” because my beta cells are “burning out” from years of over-production. I am very fit (run, play lots of sports, etc), not overweight, and eat a fairly healthy diet. He said at this point, there’s probably not a whole lot I can do to slow down the progression of things.
So my question is - what do you blood sugar levels have to be to be considered a diabetic. Right now, my blood sugar levels are swinging from around 45-55 (at my lowest poitns) to a bit over 200 following some meals. There’s no rhyme or reason to my BSLs - the lows I’m used to, because I’ve had that all my life and know how to deal with them. The highs, however, scare me. I’ve never seen numbers over 100 before and to see 200, 216, and 220 on a meter following a meal is, for me, frightening. Ironically, my A1C came back normal, probably because I still have some really wicked lows.
Has anyone been through this or something like it? Do I just get to sit back and watch my pancreas slowly die? I’m not sure what I should be doing, everything just feels a bit out of control…
I don’t know anything about your condition, so take that into account with my response, but blood sugars over 200 are not normal in a non-diabetic. The diagnosis of (either type) diabetes is standardized at an A1C of 6.5.(pre-diabetes at 5.7) However, you are correct, that with your frequent lows a normal A1C is not necessarily indicative of anything. Has your endo done an OGTT which shows your response to a concentrated amount of carbs over a couple hours? In your case that might be more revealing than an A1C. My suggestion is to see an endo who is experienced with your particular condition because that will dictate any treatment you receive. Regular highs in the 200s after a meal need to be addressed. Also be sure your endo does testing for Type 1 or Type 2. As for what you can do to slow down the progression of things, insulin has been shown to slow down beta cell destruction. I’m sure that isn’t what you want to hear, but I think you need to explore further and consider what treatment would be appropriate.
This is a tough one because the lows that you are probably counterindicative of treating the highs with insulin or an oral med. At least, that’s where I think your endo is going. And since it’s a congenital disease and not classic insulin resistance that’s causing them to poop out, your choice of oral meds will need special consideration. I wish I could hel more but I just don’t know.
It wouldn’t hurt to get a second opinion. Maybe someone could recommend a good endo in your area? I see that you are in DC, my old endo moved down there. His name is Michael Thompson and he’s at GWU. I trust his judgment completely. At any stage, there is nothing more important than getting an opinion you can trust!!
I hope someone can come along and be of more help!
An OGTT was not even discussed at my appointment. The problem with congenital hyperinsulinism (CHI) is that it’s not a common condition. On top of that, I’m really among the first generation of people to be treated with diazoxide and make it into adulthood with “normal” cognitive functioning (my understanding is that before diazoxide was widely used, most children with HI ended up with severe mental retardation because of the prolonged hypoglycemia in infancy, and I’m sure many babies with it died before being diagnosed).
I am going to follow up with my endo tomorrow. I am going to stop by to pick up my lab results (just to keep for my records) and they asked that I drop off my BSL logs. They are kind of sporadic and I’m trying to get better about testing, but hopefully what I have will help them figure out what to do. I feel healthy and want to stay that way. If there’s something I can do now to prevent further problems, I will do it.
Incidentally, I have read about things like low doses of insulin and other oral medications to slow down the progression of type 1 and type 2 diabetes, so I am going to inquire about that. I also inquired today about a continuous glucose monitor. Because I still have some scary low BSLs (to the point where I am semi-conscious and not remembering what happened afterward), I think a CGM might be helpful. It might also help me better depict a pattern in my BSLs…
Thank you for the referral! I will keep this name in mind if things don’t work out with the endo I recently started seeing. At this point, I think I’m sort of like a guinea pig. To be honest, no one knew what would happen when they put me on metformin years ago. Despite all conventional wisdom at the time, it did help smooth out the lows I was having. I’ve found that, for me, metformin makes the low BSLs come on more slowly and gives me more time to react to them. I am also wondering if it has helped to slow down any progression towards diabetes. The endo I saw recently admitted that because CHI is so rare, it’s sometimes just a “try it and see if it works” game.
So I got my labwork back. My A1C came back at 5.6. The lab sheet indicates that you’re at “increased risk for diabetes” at 5.7. In the last few months, my blood sugars have ranged from lows in the upper 40s to highs in the low 200s. Interestingly, my insulin levels were 3.2 (the reference range is 0.0-24.9, but everything I’m reading online says that “normal” fasting insulin levels are between 5 and 20). The weird thing is that when I was younger, my insulin levels were always really high because of the HI (I don’t know the exact values, just that they were high).
Should I be concerned? I’ve done a lot of reading online and, in some cases, it seems to be that low insulin levels are good. But in my case, I’m not so sure. Are insulin levels ever used to determine if someone has diabetes?