Hungry? Hypoglycemic? Hope this helps.

I posted this on the grad board too, but I thought I should post it here as well.

In the past week and a half, I undertook the 5dpt.  I am almost 3 years out and had put on almost 10 pounds since September.  I had been experiencing constant hunger, cravings, and obsessive thoughts about food, that were really wearing me down.  I had also stopped going to the gym on a daily basis because of the demands of my job.  Most alarmingly, for the past several months (even before the weight gain began) I had been experiencing increasingly frequent and severe bouts of hypoglycemia.  It begins with feeling cranky and anxious and can continue on to include shakiness, dizziness, heaviness and difficulty controlling my extremities, confusion and trouble verbalizing my thoughts, to the point where I feel like I'm going to black out.  It has even happened while driving. I started seeing that others on the boards have had similar experiences.  So I did some research and found that hypoglycemia is a growing problem in the post op community as more and more of us get further out.  The symptoms include all those listed above including hunger!  The causes are unclear, but studies suggest that the problem is part of the dumping syndrome.  It might be that although we have lost all this weight, our pancreas spits out insulin in response to carbs as if we were still fat.  That causes us to go into hypoglycemia like a diabetic who gets an insulin overdose.  There have been cases in which patients have had to have partial or total removal of the pancreas.  Needless to say, I was a little alarmed as I poured through the research.  

However, I began the 5dpt in the hopes that I would be able to get back on track.  I found out two important things about me.  First I found that I can still eat a lot!  My stoma must be rather large because stuff just seems to slide right through.  So in a way, the 5dpt should have been a big disappointment for me.  But it wasn't, because the other thing that I discovered was that cutting out carbs drastically reduced my appetite, obsessive food thoughts, and cravings.  Though I can eat a lot more, I am finding it much easier to stop at a reasonable portion.  Additionally, I have had only minimal symptoms of hypoglycemia since about the second day of the 5dpt.  I was so pleased with the results that I have continued to cut out pretty much all starch based carbs because I have found that my body responds really drastically to them.  This includes whole grains folks!  They contain starch and have a high glycemic load even though their glycemic index may seem low.  I have been eating low fruits with low glycemic loads, vegetables, and all types of protein and feel 100% better.  I have gone from having a couple of hypoglycemic episodes per day to not having had one in several days now.  Let me stress too that I was not eating terribly before.  I generally eat a mediterranean diet, but I was eating bread, grains, and pastas, as well as desserts and sweets now and then.  I find that I cannot tolerate more than a condiment size amount of these items or I am hungry and weak within 1/2 hour to 2 hours later.

As a postscript, I find that I also have to be very careful about artificial sweeteners.  If I overdo these, it brings back some of the symptoms and hunger.  However, though you would think I would feel deprived, I don't.  I have a lot more energy and I am rid of the constant thoughts about food which were causing me to become very depressed.

I have lost 5 pounds, which is very good considering that I am a lightweight, and I have lots of energy and am enjoying exercising again.

I've been so thrilled with the results, that I thought I would share.  I hope this helps some of you that  have been experiencing the same problems.   I'd love to hear from any of you who try this to see if it helps you as well!

 

I am one of those persons that developed nesidioblastosis of the pancreas. I just had 75% of my pancreas removed in December to counteract my low blood sugar. I suggest to anyone having problems with hypoglycemia to take it very seriously as this can cause blackouts, coma, seizure and death.  My blood sugars would go down into the 20's. Cutting carbs is one solution but at some point other measures need to be taken.  I suggest that anyone with hypoglycemia sees an endocrinologist and starts to measure their blood sugar.

Thank you!  I am taking it very seriously.  I've found several research articles that are quite disturbing, so I went out and bought myself a meter last week.  Right now, eating almost no starchy carbs, I have been able to keep my blood sugar pretty steady.  The question is, of course, can this be managed in this way if caught early enough, or is it going to continue in a declining cycle no matter what I do.  I plan to have some carbs this next weekend to see what happens to my blood sugar.  I have an appointment with my GB surgeon on the 12th and plan to follow up with an endocrinologist from there.  

 

How are you feeling now?  Did the surgery help?  What kinds of adjustments are you having to make?  

 

 

I am feeling pretty good considering the surgery was pretty awful. It has been two months and I am able to walk on my treadmill now and feel good about that.  I will always have to watch what I eat. I can still develop more islet cell growth in the last part of my pancreas or I can develop diabetes....I have noticed feeling shaky from sugar and refined carbs, so I am sticking to complex carbs and protein. Having too much insulin caused my blood sugar to drop down into the 20's and I am lucky I didn't have seizures or permanent brain damage. I got pretty forgetful though and tired a lot. I gained 25 pounds from my ordeal. I will go next week for a glucose tolerance test to see how I am doing. Good luck with your endocrinologist and I hope you will be okay. I hope you will post again.

 Hello, my name is Kim and I just read your post. I was so happy to see someone on here that has had their pancreas removed, not that I would wish that on anyone but I am going to also be having the surgery after my calcium stimulation test the 29th. Would you please tell me everything you can about this. I can take all thew gory details and would appriciate it so much. Also, was their much pain with the stimulation test and how long before they gave you the results? I hope all is well for you and I am glad that you are on this site as you can help alot of people that are in fear of the unknown. You can wright me directly if you wish at stevielivjaysmommy@yahoo

Go to the Iowa forum and the gal who helped me is there; her name is Lyn and she had her surgery done at Mayo last spring.....there is also another gal out there who has chosen to try medication to suprress her insulin production, but I haven't heard from her in a while... So there are more of us every day.  Anyway, my blood sugars were going down into the 20's, but no seizures associated with that. I would be sick and tired for a couple days after a major drop, though, so I finally went through all the test at the University of Iowa..... The calcium stim test was not painful. The only bad part was laying on my back for 6 hours after; I had a lot of back pain. Then I got sick afterwards from the whole thing, but no pain from the test. I had a wonderful team at the U doing my test. I had a tripling of insulin in one area and a doubling in another so in December I had the tail and body of my pancreas removed. I had a spleen saving procedure, so I did not lose that. Some surgeons won't try to save the spleen. So I lost my gallbladder and 66 percent of my pancreas.... The surgery recovery was a total nightmare because the doctors did not realize that my epidural only worked on one side of my body and I was in excrucitating pain for nearly 3 days before that was discovered. I got pneumonia and was very bad off there for a while. Then when the pain got under control, I was fine. I went home after 7 days. I recovered at home for another 3 weeks and went back to work Jan 2..... Today my incision area is still sore, but I am able to really do anything. The bad news is that Lyn and I both are still dropping below 80 when we eat refined carbo foods......I had a glucose tolerance test and my blood sugar fell to 45, so I may still have the nesidioblastosis.....I have not developed diabetes though, which is another risk......So I still eat a fairly low carbohydrate diet but it is not as severe as before surgery. I gained 25 pounds over the past year from all the over production of insulin and I can't seem to lose an ounce anymore......but right now today I am okay for the most part. Where are you having your test and surgery done? I hope for the best for you. This is truly a rotten deal overall for us, but hopefully others can learn from our experience and choose the lap band instead of RNY...... Write me anytime here or at [email protected]; I hope to hear from you soon.

Thank you so much for your post. I was hoping that someone would get back to me and tell me the facts about the surgery and you did. I am having the calcium stimulation test this Friday. The day has been moved around a couple of times but finaly it is time. I am on the highest dose of octriotide (1200 ml) and it is not working. It will sometimes help for a couple of hours and I am sure I would be worse without it but it is not helping enough to stop me from contimplating surgery. I am seeing Dr. Norton and Stanford and in California from what I understand he is the best. I am thinking of getting a second opinion at the mayo clinic after the calcium stimulation test. I think that the mayo has done more of these and if that is the case then that is were I will go. The hardest part about having the surgery is telling my kids and them being without me for some time or god forbid something bad happens. Again thank you do much and please keep in touch and let me know how things are going for you. Oh one more thing, if you had the surgery to do over again would you? Thanks, Kim

Hi Kim, I'm the other Iowan with this issue.  I had the cal stim done at Mayo where the procedure was actually invented.  They had to pre-medicate me to the max for allergy to the contrast they use.  So I was pretty much in nod land the whole time.  There was very little pain that I remember.  Like Tanja said, laying flat for 6 hours is a pain.  Worse than the procedure.   Mine showed that the tail of my pancreas was secreting 5 x it's baseline with stimulation.  The body was twice.  I had 60% of my pancreas removed and all of my spleen.  The recovery was probably the worst one I've had.  Very slow.  I developed iron deficiency anemia post op and really struggled with that.  I also had a wound infection in an area where the incision crossed an old one.  Post op pain was managed pretty well except for everytime I pushed the pain pump, I itched like crazy.  I'm allergic to opiates.  Guess I'll never be a drug addict.  LOL I still have lows.  Lowest being 50.  I have to be very careful of what I eat and when I eat it.  Like the other poster, any carb can and has made me drop.  I also worry about if this is progressing.   Email me anytime at [email protected].  I'll be gone for a few days, going to Arizona just in time to miss our next big snow!  Yippeeeeee!!! Lyn

Lyn, I am so sorry to here that after all that you are still becoming hypoglycimic. Does this meen if it gets worse that you will have to have the entire pancreas removed? Could you tell me how long you were in the hospital and how long your entire recovery time was? Hope all is well with you and you enjoy your time out of the snow...Kim

I don't have a clue as to what they will do if my blood sugar keeps dropping.  For now, I can somewhat control it with diet and it doesn't drop so low that I'm in danger of passing out.  But that's how it started in the beginning.  Only time will tell if it will progress to the point of where it was before surgery. I was in the hospital for a week.  Recovery was very slow as I developed iron deficiency anemia after surgery.  So being low on iron and anemic, I'm not sure I'm still back to where I was.  Most days I'm close.  But with the low iron and infusions, it may always be like this now.  Grrrr. You said a bad word - SNOW!  We've had over 50 inches of that nasty white stuff and spring is still a long way off.  Why do I live here??????

Lyn