NIPHS - Noninsulinoma Pancreatogenous hypoglycemia syndrome

I just received this diagnosis due to my sugar levels shooting up and then bottoming out. I was petrified to even take the glucose test, but finally agreed, as long as they would monitor me during the test. Knowing how I react to sugar, I have had minimal sugar since I had rny surgery in 2008. In fact, I think the Dr. did not believe me when I said I avoid refined sugar and still have these fluctuations. She believes me now.

Is there some good information on this subject? A good reference website for the information? Is there anyone who has it who could tell me how they dealt with it? I am very concerned because it only seems to be getting worse.

Liz,

Thanks so much for the detailed information. I just need to figure out the next step. I personally know several people who have had the RNY and do not share this issue. I am glad to have a name to it and hopefully will be able to defeat it soon.

Kelly

Hi I was just letting you know that you are not alone out there in the world of hypoglycemia...  I am exactly one year out of rny and I am suffering with it so bad I chose to stop eating complety!  My doctor has set me up with a blood glucose monitor, and a journal, and guidelines of acceptable blood glucose levels at certain times post eating.  She is at a loss of what to do because I am so senitive to anything that it is hard to find anything to eat that doesnt make me crash!  She is contacting specialists, and is concerned because she said extreme cases are resolved by a removal of part of the pancreas!  If you come across a solution, or even an idea, could you please pass it on to me, cause I need help too!


Thanx

My friends,we are now may be not know each other ,but hearing your news ,I feel sory for that ,how I hope that you can turn better now. If you want to settle your problem you can seach the network by htttp://www.tcmdiscovery.com .It will give you some help!

NURSE

Leslie Baum RN, BSN

Clinical Research Coordinator

Internal Medicine

Endocrinology, Diabetes & Metabolism

UC Academic Health Center

3125 Eden Ave., Room 1331

Cincinnati, OH  45267

Tele:  (513) 558-0201

Fax:  (513) 558-8581

Email [email protected]

I have suffered from same symptoms as you and after more then a year trying to convince my doctor that SOMETHING was wrong and insisting on Endo consult I have severe reactive hypoglycemia..YUCK..Being a nurse I had to google everything out there that pertained to this subject and came across a study being down in Ohio for the past 5/6 years on sideffects ie:dumping syndrome or otherwise called reactive hypoglycemia. I called this office and spoke with the Best most caring nurse, whom also had gastric bypass about this sideffect and she then refeared me to the endo in charge of the study whom was a wealth of knowledge of this condition!! Above is her info she may be able to direct to you local Endo whom have experience with this .. She also encouraged me to share her info (Like I said wonderful Nurse) to anyone whom  it would help !!

With our cases symptoms being so similar/severe- :do you know of any Drs in the philly/DC area whom you'd recommend? 

Has anyone with VSG experienced this?  I am about 17 months out, feeling great, but have had 2 recent episodes during increased but very mild water walking.

Kelly,

We had our weight loss surgeries on the same day and the same year and now we are experiencing the exact same thing!  I too have NIPHS, it has destroyed my life.  I am completely disabled and nothing seems to be working.  Like you it is getting worse, not better.  I am scared to eat anything at this point. 

I will be seeing an Endocrinologist at UCSF who specializes in this and if he has any good information I will pass it along.  Also how are your iron levels?  Any anemia?  I am starting a Facebook page to make people considering Gastric Bypass more aware that this is happening.  I would love to hear more about your struggles and compare notes.  I am so sorry, I know what you are going through.
Janet