Anyone out there like me?

I have an odd story and wanted to see if there were others who have been through this.
I was diagnosed with a genetic condition called congenital hyperinsulinism when I was
About 7 months old. HI makes my pancreas produce way too muc insulin.
Now I’m 32 and because my pancreas has been on high for all my life,
It is slowly starting to give out. No one knows exactly when I will become diabetic,
But it will likely happen in the next few years. Has something similar happened to anyone
Else out there?

I know of a lady who had this happen. In some ways she felt she was better off when she did lose her insulin production. Her life got better, with more standard treatments, and less explanations.

I hope things work out for you

rick phillips

Oooooh yes! I was not diagnosed but had all the symptoms throughout my life until I was taken to my homeland for the first time when I was about 27!!! In the UK they refused to do any tests saying that such things were bunkum (they also did not pick up on the diabetes many years later and after ten years of symptoms, but that is another story!) and that it was just an excuse to eat and that I should exercise self control, despite the fact that I had all the symptoms of hypoglycaemia.

To cut a long story short, I was diagnosed in Latvia having been through all the tests known to man - I think and despite the fact that they had little equipment out there during the communist times! I had (still have) a cyst on my pancreas which was causing to problem. I suspect my father has it too and watching my youngest nephew I would not be surprised if he did have something similar, judging by his moods at certain times and the fact that he improves with having had food. There was talk of sending me to Moscow for surgery to try and remove the growth but I decided that being away from home in a foreign country, not speaking the language and everything else I was not going to have that done. Turned out it was the best decision because now I know better the surgery was(is) waaay too risky and could have caused a fatal bleed as they would have to go through my liver!

I was not given medication (though it was prescribed) because the doctors in the UK refused to believe there was a problem. I did however follow a diabetic diet if you like. Basically avoiding sugars as a diabetic would. Too much sugar would cause the insulin over production and then of course I would need more to rectify it … And my weight did go down as I was not producing quite so much. Insulin is well known for being stored as fat if not used. I had to eat little and often - like snacks every two to three hours. I guess I got fed up with this constant snacking and left off altogether, plus I had another cyst on my spleen which was pushing my stomach up causing a hernia and I could keep nothing down anyway.

Then the symptoms of diabetes started and the doctor that I see simply did not pick it up! I had all the symptoms for 10 years! I went from slightly large to looking like someone who had just come through a concentration camp! The pain in my abdomen was such that they put me in hospital for 6 weeks while they did pioneering surgery on my spleen which was a success - for a year! They were just about to release me when they said that they would do one more blood test and that was when diagnosis was made!! Which meant that I was in hopsital for a further two weeks while they stabalised me! To be honest, I was glad of the diagnosis (though my first thought was needles!) as it explained a lot about why I was always so ill.

I have never come across someone else who has been officially diagnosed. Perhaps we can exchange views and notes!

Wow, that’s quite a story. I was diagnosed with congenital hyperinsulinism (CHI) around 6-8 months of age. I take diazoxide to help raise my blood sugar and metformin to help my body use what insulin it does produce more efficiently. I am very healthy and active and have no other issues. I was always told that diabetes was a likely possibility as I got older, mainly because the beta cells in the pancreas just start to give out due to insulin over production for so many years. I’ve had a few hypoglycemic seizures over the years I always have to carry a glucagon pen and medical card explaining my condition.

Diazoxide is great medication for keeping blood sugars up, although it does have side effects, so I now just take it whenever I’m doing something that I know will cause a severe low (i.e., strenuous exercise).

I had not been to an endocrinologist in years, mainly because it’s such a pain having to explain my condition and history. But I finally found one recently who I really like and he was very patient and even conferred with a colleague at NIH about my situation to ensure I was getting the best possible treatment (what I liked about him was that he just admitted when he didn’t know the answer to something instead of making it up).

Anyway, the concern is that, for the first time in my life, I’m seeing blood sugar levels upwards of 200 after I eat. I will sometimes be around 60 when I wake up in the morning (a normal fasting blood sugar for me) and then, following a meal, my numbers will soar. This is a new pattern for me. I’m trying to be responsible and keep track of my numbers for the first time in, like, forever. The pattern is a little disconcerting because I never have had readings over 110. Seeing those big ol’ 200+ numbers scare the s&*t out of me! And, what’s more annoying is that I’m still experiencing random lows (i.e., numbers lower than 60).

Anyway, my new endo has ordered some basic blood work to see where I am, although I still have the lab slip in my purse almost 2 weeks later (I’m a procrastinator).

At what point did you actually feel the symptoms of diabetes? To date, I’ve never experienced a single symptom indicating that my blood sugar is too high (i.e., thirst, weight loss, etc). For now, the endo wants me to keep a close eye on my BSL (I test about 6 times a day) and stay on my current medication therapy (diazoxide and metformin). Once we get all the blood work back, we will re-evaluate where things are.

I definitely feel somewhat the same. HI is not a common genetic disorder (it has an incidence of about 1 in 50,000) and it’s definitely not something physicians have a lot of experience with. For all my life, treatment has been sort of trial-and-error. Thankfully, research has progressed and now kids born with HI get much better treatment and have bettern outcomes. I was lucky in that my BSL was always controlled well on diazoxide (a medication that raises blood sugar). I was started on glucophage/metformin about 10 years ago to help my body better use the insulin it made. However, for the first time in my life, I am seeing blood sugar levels over 150, something I NEVER saw. Even when I decrease or don’t take diazoxide, I’m seeing levels upwards of 200 after meals, so I know this is a sign of my pancreas “giving out.” At this point, I’m just tracking and using insulin “as needed” if levels go way too high, but again, it’s all trial and error. I will still have days when my BSLs stay under 70 for most of the day. I’ve talked to other people with HI who have had similar experiences.

I will say that it would be sorta nice to walk into a doctor’s office and say, “Yeah, I have diabetes…” and that be that. BUT, I have never had to have any kind of food restriction; with HI, I just had to keep my levels up, which pretty much meant eating whatever I wanted (and avoiding protein, because my HI is protein sensitive). Having to follow a more strict diet and taking insulin on a regular basis really scares me.