Update on hypoglycemia

The saga continues. Brief history - since last June, I've had problems with low blood sugar, as low as 38. Finally saw an endo in Jan, had labs when I was hypo, all elevated (insulin, proinsulin, c-peptide). Fasting labs all normal. This rules out an insulinoma. Finally got tired of endo not doing anything so insisted on being sent to Mayo. Have an appointment for the end of March. In the meantime, he put me on Acarbose, a diabetic drug, to try to temper the lows. This is an off label use. It blocks the absorption of sugar in the gut. It also has side effects similar to metaformin. I got really sick on that. Had a routine eye exam on Tuesday and I have changes in the macula. Not good. He thinks it's blood sugar related. I'll need an opthomologist evaluation while at Mayo. I will be there 4-5 days, plus whatever for surgery. Surgery was news to me. Got the same sort of thing from local endo today. He said he hoped the drug would postpone the need for surgery. Also news to me. Everyone seems to know but me. GRRRR! It is probably nesidioblastosis, based on symptoms and lab tests. The calcium stimulation test will be definitive. Hopefully, if it is, it's only in part of the pancreas. I've been corrosponding with someone from New England who is going thru the same thing, and her pancreas shows changes in both the head and tail of the pancreas. If she has to have surgery, it will be the whole pancreas, which will make her diabetic. So I'm getting a little weirded out about all this. I can only imagine how stressed I'll be by the end of March. Not to mention my son is getting married April 14th, which is a good and happy thing. We love Cristen and her girls. But I'm making 1000 mints, 3 groom's cakes, and a quilt for their wedding gift. Yup, I will be nuts. Quilt is close to being done. Working on finishing up the quilting. Mints will be started tomorrow. Cakes the weekend before the wedding. If all else fails, I'll buy the cakes. Everyone stay warm and safe.

I didn't realize that you were going through all of this. Sounds like you have been through the ringer on this one. Did you ever get my emails that I sent to you through OH email? You didn't answer me so I was not sure if you did or not. I will be praying for you that things will go well and you will not have to have surgery. UGH!! Do they think that this is the result of RNY? I am just curious if it is something we need to watch out for. Did you have any symtoms at all to warn you or was it the low blood sugar? Take care and keep in touch Stephanie

Hi Stephanie, Not sure if I got your emails or not. Can't remember. Getting old. This might be the result of RNY. There has been a study done by the endo I'm seeing at Mayo about it. The study included 6 people who have this, all having RNY. I'm also corrosponding with someone out east that had RNY and has nesidioblastosis. I guess time will tell if it is caused by RNY. My therory is that in insulin resistant obese people (me included) that once you lose the wt, the pancreas just doesn't know what to do with all the insulin it was producing. So it just keeps doing it. So this may be something I've had all along, but now that my body doesn't need that much insulin, the pancreas just keeps producing. My opinion. Sometimes I can tell when I'm dropping. Sometimes I can't. I just stand up and am dizzy. It's pretty scary. Today, I ate what amounted to maybe 3-4 wedding mints. Really not a lot of sugar. I dropped to 41. The person in New England said her doc said that it doesn't have to be anything sweet to drop you when you have this. It could be a salad of all things. I've dropped on hamburger. I'll just have to wait and see what they say. I see Iowa Endo & Diabetes dietician on Thursday. Hopefully she can give me some guidelines on how to better manage this until I can get to Mayo. Weather is pretty sucky here (Easter Lake area). Sleet, snow, freezing rain. At least we still have power. Hope you do too! Hugs, Lyn

WOW that is pretty scary!!! I guess don't realize this stuff when you have to surgery done. I guess it is trial and error sometimes. Make sure you keep up on it and take care of yourself. It sounds like you are already doing that. Keep me posted and let me know if you are in need of anything and I will be happy to assist in any way that I can. Stephanie

Thanks for the offer. Just keep thinking good thoughts. I wonder if the docs really understood all the ramifications of this surgery. I'm thinking alot of this stuff is just starting to show up as more surgeries are being preformed. You know, tho, I would do it again in a heartbeat. I have no regrets no matter how this goes. I researched extensively before I decided to have surgery. I never ran acrossed anything regarding hypoglycemia or nesidioblastosis. The doc I'm seeing at Mayo has done research on it. The study he did had 6 patients in it. Pretty rare but I'm guessing maybe not so rare, only undiagnosed. We shall see. Maybe it really isn't that.