Hypoglycemia

LynW
on 3/10/07 3:09 am - Central IA, IA
There is a "new" syndrome being diagnosed in gastric bypass patients.  It's NIPHS - noninsulinoma panceatogenous hypoglycemic syndrome.  It is caused by the part of our intestines that are bypassed and the hormones they secrete.  It is severe hypoglycemia after you eat and not necessarily triggered by the foods you would generally think would do it.  Most do not have hypoglycemia in the fasting state.   So if you are having problems with hypoglycemia, be sure to push your doc to send you to an endo and be sure to have this properly diagnosed.  You need to have labs drawn when you are hypo, including glucose, insulin, proinsulin and c-peptide.  If the glucose is low and the rest high, there is a good chance you might have NIPHS.  It is progressive.  So while drugs might work for a while, ultimately, you will probably need to have part of your pancreas removed.   The major research on this has been done at Mayo in Rochester.  I seem to have this.  I have an appointment at Mayo so see what to do about it.  Currently I'm on Precose, a diabetic med that inhibits the absorbtion of sugar in the gut.  It's helping.  But like my endo here said, it won't work forever.   If anyone would like more info, you can google on NIPHS or email me and I can send you a copy of some of the research I've found.   Take this seriously!  You can go into a coma from hypoglycemia.  Don't let your PCPs just ho-hum you if you are having problems.  Mine wanted me to see the nurse educator to learn how to eat properly.  HA HA.  Like that would help!  Besides the fact that I've been eating the same way for almost 3 years and never had a problem until last summer.   I am not a doctor or health care provider.  Only a RNY patient who is having problems.  Oh, reversal won't cure this.  That's good cuz I wouldn't anyway.   Lyn
Kathy & Rich
on 3/10/07 4:20 am - Fairfax, VA
Good luck at Mayo, Lyn.  Hope they find a permanent fix for you.  I know how troubling this has been for you. Best wishes, Kathy
PinkRibbonLL.gif, Denis Ryan improved pink ribbon - 2002, thanks Denis! ~Kathy~5'7.5"~lap RNY~05/20/2005~ PinkRibbonLL.gif, Denis Ryan improved pink ribbon - 2002, thanks Denis! 279/276/244/160/148/185 (high/consult/preop/goal/low/current)
~Rich
~6'5.0"~open RNY~08/05/2004~>500+/450/437/250/239/320(high/consult/preop/goal/low/current)
tessartwork
on 3/11/07 3:25 am - Oxford, PA
Lyn, I am almost 15 months post-op and within the last 3 months, I have been having a real problem with hypoglycemia. I always had it a little bit, but lately it has been more severe...especially in the morning after I drink my protein shake. Now, if I do not eat every 2 to 3 hours and have a yogurt before I go to bed, I get dizzy and have no energy. This morning in worship, it took all I had to get through the standing part of the service. I had a protein shake and then about an hour later I ate an Atkins protein bar before Church started and I still felt that way. I pray I do not have this. Maybe I  need to improve how I am eating. As far as weight loss, I reached my goal by my one year anniversary and I am currently below goal by six pounds. (lost 113 pounds since 12/22/05).  I would love the information you have to take to my PCP. Thanks! Blessings, Tess
Amydoodle
on 3/12/07 5:52 am - Vienna, OH
Lyn, Do you track your blood sugar with a monitor?  I'm currently being evaluated for diabetes.  They told me today to start tracking my levels before I eat and then 2 hours after.  I was wondering if two hours was too late--b/c we digest food a little different than most people.  Anyway--what do your sugars run?  Does eating low carb keep them steady?  Mine stay steady but way too low.  I add in carbs and they are too high and an hour later I have a hypoglycemic attack or spend the rest of the day grazing on sweets or carbs!   I would love to have an answer to this.  My surgeons office told me I must eat wrong--I shouldn't have this happen.  They pretty much wrote me off. Amy
LynW
on 3/12/07 12:36 pm - Central IA, IA
Amy, I have an Ultra One Touch.  I check usually at 2 hours or sooner if I feel funky.  Before I was on the Precose, I was running upper 70's low 80's for fasting and was dropping to 40-60 at 2 hours.  Sometimes sooner, like 1.5 hours.   I eat pretty much protein.  When I add carbs, I drop like a rock.  Altho, I will also drop on protein at times.  Wt control oatmeal makes be drop to around 60.   If you want the article I found, send me your email addy.  You need to be assertive with your doc to have this checked out.  Hypoglycemia can be fatal, especially if you black out driving and hit a truck.   Insist on being referred to an endo and make him/her check you for NIPHS.  With NIPHS, your fasting blood sugar, insulin, proinsulin and c-peptide should all be normal.  Your labs during an episode will show low blood sugar, and elevated insulin, proinsulin, and c-peptide.  I had to do an 18 fast.  My sugar never budged from normal.  When I did the prompting of an episode, I dropped to 38!   This is serious stuff.  Make you docs listen!
Karyn B
on 3/12/07 6:05 am, edited 3/12/07 6:15 am - Chicago, IL

Thanks for the post Lyn ... you and I have been talking about this for a while now, and I anxiously await the results from your Mayo visit.  I too have been prescribed Precose. I know I've mentioned some of my problems several times ... but for those who haven't seen those posts ... last May, I passed out in Dallas ... paramedics did not check my blood sugar levels, but we since believe that was caused by hypoglycemia.  Last August at a Renaissance Faire, I had a grand mal seizure, my blood sugar was tested at 23.  And just last month, I was in Costco, started to get "that feeling", I ate the peanut butter crackers I had with me, but still collapsed (hit something on the way down, as I required 7 staples in my head) ... paramedics said my blood sugars were at 50 ... which they believe was on the way up, since I had eaten the crackers. Over this past weekend, my sugars dipped to 50 on Saturday (2 hours after eating), and then Sunday, one hour after eating my sugars were 123, and the second hour they dropped to 68.  There doesn't seem to be much rhyme or reason as to when this happens (or with the food I eat), and as Lyn mentioned ... I don't seem to have a problem when I DON'T eat (did a fasting test ... all levels were fine ... BUT, I also did a glucose tolerance test ... my sugars were down to 36 the first hour and 64 the second hour).

If anyone else has similar experiences, I'd love to hear what is being done or suggested by your docs ...

--Karyn P.S.  My endo also said I should be on a high-fat, high-protein diet, a la Atkins.

Karyn B, -185 lbs less than I was 5 years ago!
Chi-town


Never eat more than you can lift.
- Miss Piggy

Amydoodle
on 3/12/07 11:13 am - Vienna, OH
I read on another board about people getting hypoglycemia or rapidly changing blood sugars from their stomas being stretched and the food going in and out of their pouches too fast.  They were getting revisions to duodenal switches or having bands put on their pouches.  I don't think that my stoma is stretched but maybe I should check into it?  Have any of you checked into this?  I can't eat that much compared to most non-op people.  A cup if I chew a lot and eat slowly.   Amy
LynW
on 3/12/07 12:38 pm - Central IA, IA
I haven't heard of that.  I wonder if they really have NIPHS and the docs aren't recognizing it?  
R C
on 3/12/07 11:28 am - IA
Lyn- I also am going through the same thing.  I was placed on Precose 25mg 3 x day. But due to the side effects it was cut in half and now I was told to go ahead and stop, it wasn't helping anyway.  My endo wanted me to try a different medication, the first side effect on that one was RAPID WEIGHT GAIN.  No thank you.  I have been consulting with my original surgeon who is talking about doing a BPD/DS.  My endo referred me to the bariatric surgeon at the UIHC and they called me today with my appointment and she said I was being referred for a reversal of my RNY.  I am soooo confused.  I do not want a reversal, I have already gained a lot of weight this past year, had a baby and continued to gain.  The hypoglycemia developed during my pregnancy.  They thought it would resolve when I had her.  Anyway keep me posted on what you find out. I myself would not allow anyone to touch my pancreas.  I would get several opinions if I were you.  Good luck Kourtney
LynW
on 3/12/07 12:28 pm - Central IA, IA
I've been researching this extensively.  I've only found one or two references to reversal and it said that even with a reversal, the hypoglycemia doesn't go away.  Once the beta cells start doing their own thing, the only thing that stops it is surgery to remove 70% of the pancreas.  I would not let anyone tell me to do a reversal until I was properly diagnosed.  Dr. Mason at UIHC has also written papers about NIPHS.  Who are you going to see there?  Be sure to ask about NIPHS.  If the doc doesn't know about it, run away as fast as you can.  Anyone who wants more info, send me your email addy and I can email you the paper I found that Dr. Service from Mayo wrote last fall about NIPHS.  He presents a case and I fit it almost to the tee.   If you are having problems with low blood sugar, don't let your docs tell you it must be how you are eating.  With me, I didn't change anything and suddenly last summer, I was having hypoglycemic episodes daily.  With NIPHS, you can drop with eating a lettuce salad one day, but not a cookie.   It's very strange the things that set me off.  One day it will and the next it won't.  Some foods will always trigger it - oatmeal for me.  I've eaten oatmeal for 2.5 years and suddenly last summer, I would drop to 60 everytime I ate it. 
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