NIPHS - Noninsulinoma Pancreatogenous hypoglycemia syndrome

Janet,

It is a constant struggle. I have started a medication called acarbose. It is helping somewhat for now. Let me know what happens with yours.

Has a Facebook pages been set up to discuss NIPHS?

I have had this problem for awhile and there are a few things I have found that help.

I had to see a dietitian for this and she was really helpful. I always assumed that I needed more protein and that would somehow keep me level. And protein does help keep things a bit more level, longer. But what I didn't know is that I need to take it with a type of sugar to get my blood sugar back up. So I would always be low or very low blood sugar with a mostly protein approach, and never reached 'normal'. It also made things get progressively worse.
Since my work doesn't do breaks and low blood sugar can hit me at anytime (1-2 hours after a well rounded meal) I always have dried fruit and nuts/seeds on me.

-You want to keep the snack to 200 calories, so the amount depending on which dried fruit or nuts you are eating. As soon as I feel hypoglycemic I eat 5 dried apricots and 2 tablespoons of *salted sunflower seeds. (I was eating unsalted but my already low blood pressure(100-90/60) was putting me even lower(90/41) since the dried fruits have a lot of vit K). It is the perfect snack to carry with you anywhere and I have them pre-measured in snack ziploc baggies in my purse ready for me when I need it.

-Weight training, increasing muscle helps the drop in blood sugar to not be so dramatic. (To increase muscle you need to eat protein and supplement creatine right after weight training)

-Plan to eat a lot of small meals so as you drop you can get back up.

-Chromium is suppose to keep blood sugar more level, I am uncertain how effective it is.

-I am currently trying 2 minutes of thigh exercise just before eating a meal ( squats, lunges or squeezing my butt and thighs together). I read that it helps "open up the muscle for glycogen storage" So that when your body automatically takes the sugar out of your blood more of it goes to muscle instead of fat!

-A slow digesting protein drink like syntha-6 I have found helps.

Thanks so much. It is such a weird thought for me because I think Protein, protein, protein... I carry nuts all the time, not even knowing why. But I try to make that my snack.

I am just so happy to know that I am not alone in this.

I hope you have resolved your problem. FYI I too am hypo and had the DS. It seems to happen not long after I eat and I can end up at a reading of 50 sometimes. I am currently laying down because of an episode and not feeling well at all. I have had this happen less than a dozen times since surgery in may of 10.

I am almost 6 yrs out from rny.  been battling hypoglycemic episodes 2 hours after eating for almost 4 years now.  I am at my wits end!  I have seen several endocrines, several other bariatric surgeons, multiple dieticians, tried a list of meds and still have them.  Now the consensus is to have a revision to a VSG which in "theory" should help the episodes since the small intestine would be reconnected for absorption issues which would tell the pancreas not to dump all the insulin.  Anyone else had a revision for this?  I'd love feedback of all kinds!!  Thanks!  Natalie

 I am doing somewhat better since being on the acrobose medication. I can usually tell when I am dropping as I get the shakes really bad. At that point I am typically below 50.

I have started weight lifting again and have noticed it drops during training. I have started taking a whey protein shot either right before or during my training. It has helped tremendously. 

This seems to be more common then I would have thought. Please let me know how everyone else handles the issues.

Thanks!

I, too, have this.  I'm 7 years out but probably have had this for several years.  Two weeks out on Acrabose and already at 100 mg three times a day but not helping too much.  I typically spike then drop within 2 - 3 hours but on the medicine I don't spike but still drop! 

I think this is much more common than people think it is.  I've had symptoms for 5 years but they didn't start getting worse until about 6 months ago.

Glad I've reconnected with this site.  Great source for people who had this surgery to connect with others to share similar experiences.

I had my RY-GB June 14,10 and have have done o****il about the last yr. I have always been hypoglycemic and been able to control it. Last yr I started getting highs that would go up and crash down lower than I had before and started having symptoms I hadn't been use to. Passing out, vomiting, light headed, dizziness, and extremely tired all the time. The Dr. at Madigan didn't know how to treat me because he hadn't see this before so just had me checking my blood sugars and following-up every 3-6 months. I finally went off post. They did a stream of test and I got diagnosed with NIPHS with possible underlying Diabetes. Which runs like wild fire through my family. I have been on Precose for a month now and they just increased my dose. If this doesn't work there is one other med then its off to the OR. 
 
  At my appt yesterday we went into great lengths talking about diet changes switching to whole grains and he stressed how important fiber and protein are. Also staying completely away from sugar which I do anyway. I am going to talk to their dietitian and hopefully alot more helpful hints.

I have not been officially diagnosed with this problem, but it sounds exactly like what I'm going through. It seems like my bloodsugar spikes to 200-300 after I eat, then drops into the 30's or 40's about an hour or two later. If I take any glucose tabs or try to eat to get it up, it spikes again. I've passed out, gotten the shakes, seizures, headaches, confusion, etc. No matter what I eat, it is always the same...Feel like giving up eating alltogether, but know that I can't. I am at my wits end! I'm not even allowed to drive anymore. It's sucking...