NIPHS~ Non-Insulinoma Pancreatogenous Hypoglycemia Syndrome AFTER RNY

For the last 6-8 months Ive been going to my PCP with episodes of LOW (37-52) blood sugars. They did all the "normal" blood test and they all came back in the normal range. I called my Surgeon and was speaking to them about this and they told me I needed to go to an Endo. STAT!! I get these episodes mainly AFTER eating a meal. Which is opposite of a normal diabetic. I can eat a Greek yogurt and 20 mins later notice that my vision is not right and check my sugar and be at 50. After meeting with a WONDERFUL Endo yesterday he started me on an injection 3x daily called Octreotide, and he refered me to the Mayo Clinic. I'm wondering if there are anyothers out there with this same thing happening? It is VERY rare from what I'm being told. I know when I left the Dr's yesterday I was really REGRETTING my decision to have the WLS. Today, Ive been able to "digest" some of the information and start on a new diet plan ect.....I have these episodes on a NON-REGULAR basis. I can go 2 weeks and be good then have it happen 3x in 2 days. Thanks for any and all information...

I have seen a number of people post throughout this site on hypoglycemia after weight loss surgery.  I don't know if it is the same as you describe, but certainly can understand the frustration at trying to monitor an intermittent problem like this. 

Give a search in other forums - I am sure you will see postings about it.  I would agree that working with an endocrinologist, and anyone else that he/she recommends, is your best plan of action right now.

Good luck!

 

Reactive Hypoglycemia is very common pot op RNY. Some have worse than others.
I deal with mine with diet. Mainly I try to avoid simple carbs or starchy carbs. Even fruits can cause low BS in me. Greek yogurt - if it is fat free or with any sugars - fruits added - I will get low BS. Only plain Greek yogurt with some fat and proteins my body can tolerate. I found out that adding fat to my diet really helped with low sugar issues. There is many people on OH on RNY board that deal with that. Some - like me choose a very strict diet - others - take meds. Post your question on RNY forum. You can also pm me... Hugs...

FOR ME I HAD R N Y SURGERY IN 1980 AT 550 LBS. HAD A REVISION IN 91. HAD LOW BLOOD SUGAR OFTEN WHEN I GOT DOWN TO 187. I WAS VERY ACTIVE. DANCING EVERY NIGHT AND REAlly watching what i ate. i  carried an ice chest around with me all the time. learned how it felt when i need to eat or drink something fast. dont have much trouble anymore.  but can eat a little bit more now. and a little bit bigger. aprox 245 to 250 lbs now

HELP!!  My daughter had gastric by-pass 8 months ago to correct severe gastroparesis.  In April she had her first seizure, passing out, losing memory, etc.  It took days for her to get back all the memory she lost.  Then in a few weeks, she started having more and more symptoms with these seizures in addition to memory loss - rigidity of her body, convulsing while passed out, terrible headaches, sensitivity to light and sound, going from being extremely hot to extremely cold, inability to speak, hands and feet drawing into fetal position and wetting herself.  She also has extreme spikes in blood sugars.  I have taken her to hospital ER's from right around us all the way to the best in the state - The Medical University of South Carolina and they can't find the problem and end up telling me it's psychiatric.  So I carried her to Charlotte, NC to the Carolinas Medical Center and they also said they couldn't find the problem.  The doctor that did the gastric bypass on her has basically washed his hands of her saying he's never heard of any other patient with this problem and he's done 1000's of these surgeries.  When I have tried to get him to look at the data I have found while researching, he refuses, saying data found on the internet is unreliable.  I too found the information put out by Mayo Clinic identifying this problem.  Can you please give me the name of a doctor at the Mayo Clinic that you saw and which location?  I live closest to the Florida clinic, but will travel anywhere necessary to find someone with knowledge of how to treat this.  Also where is the Wonderful Endo you found?  Please, please, help us.  This has disabled her completely!  My e-mail address is [email protected].

Hope you found some help and if so would you mind sharing it with me.  I had gastric by-pass in 1999 and my symptoms have been getting worse each year.  Recently I had the worse one yet.  I was with my sister and she witnessed my first ever seizures, rigidity of my body, hands drawing and sweating, clammy skin, blue around my mouth and I too wet myself.  I thought I had a gluten problem for the last couple of years and have tried to stay away from all products with gluten.  I stumbled across this condition doing research and all the symptoms I had appear to be associated with it.  I am looking for a Endo doctor now in my area since I relocated to GA four years ago.  My surgery was done in VA. 

i was just diagnosed with NIPHS and started on acarbose 25 mg 3x per day.  I am only 2 days in but it's working so far, I go from 360's to mid to high 40's within 1 hour every day and have not for 2 days (what a relief).  I have a MRI to verify no insulinoma on Monday.  I had RNY is 2006 and started symptoms in 2007 but I DO NOT REGRET MY BYPASS.  I would do it again in a heartbeat.  High blood sugar followed by low blood sugars.  Dizzy/Stumble.  Flushing.  Blurred Vision.  Can't get the right words out.  Fatigue.  My Doctors kept telling me I was fine and nothing was wrong, but I know my body.  I finally went to my Gastric Bypass Doctor and found my answer.

I am extremely active.  I have competed in 7 full Ironmans with my 8th in June.  I am in amazing shape and eat close to if not perfect.  I am 7.5 years out of RNY as have not had refined sugar, alcohol, or carbonation once.  I am tired of dizzy being my normal and am looking forward to a new beginning!!!

Connie

Hi.  I had my RNY in 2009. Prior I had some episodes of hypoglycemia. I have a long fam history of diabetics and heart issues.  I have not had alcohol since my surgery.  I try to eat but sometimes forget. My BS can go as low as 40 and then it take me 30 min to recover.  This happens almost daily. 

MRI was normal

The Endo was not impressive...wanted to try surgery on pancreas but was not sure it would work.  After reading about NIPHS I now will try Acarbose.  Once the pharmacy can find it!  I understand this is avey rare side effect from RNY - how lucky am I!?  I am happy I had the surgery. I would like to know what diet has worked best for others with like symptoms. 

 

I was was told to wear a medic alert is I faint so they can check my. BS and start protocol for that immediately. 

I have cut ALL unnecessary carbs and increased my fat.  Today was 2 protein shakes, greek yogurt, chicken, avocado, eggs, havarti cheese.  Total of 170 grams proteins, 75 grams net carbs, 55 grams fat, 17 grams fat, and 1500 calories.  My blood sugars are better but I don't have to much energy.  The Doctor handling my diet said to add more fat and veggies and I will get my energy back.  I don't have to take the acarbose if I'm having just protein.  I am mixing peanut butter in my oatmeal and that is helping also.  I am having a lot of gas and diarreha on the meds but I am hoping my body will adjust.  I can not train on this little energy and I am not willing to give up doing Ironman at this time so I need to figure it out.  It will get me by until we figure it out however.  I have still had some problems of dropping to low with meds but 53 has been the lowest (better than before).  I will NEVER regret my bypass, it is who I am.  I am hoping with time I will learn more and be able to help others.  I am lucky to have a team of Doctors who care.  The research so far suggest a high fat, low carb diet is helpful with NIPHS while on Acarbose!!!

Connie

I had rny in 2003. I have occasional bouts of low blood sugar. I used to carry an insulin tester kit (my pcp made me get one). My labs were normal but I didn't understand why I was so faint all the time. I carried crackers in my purse for years. Now I only get them if I go like 6 hours without eating a little something.