Hypoglycemic Nightmare!

[gbmiller82]

Hey everyone I'm new to the site and have to ask an important question and it's a bit long winded (super sorry!)... I am not the normal candidate for gastric bypass, I had severe gastroparesis that couldn't be help by any other method than a total gastrectomy and roux-en-y. So I had this done in Nov of 2013 and for the most part had a decent initial recovery. A few weeks after discharge I developed early dumping, which only lasted about 7 months then went away. I thought that would be the end but low and behold come April '14 I started having hypoglycemic event after I ate anything (no matter the sugar content). It started overnight with no clear reason, and it was severe. I was having readings in the 20s-50s about 2-4 hours after eating. I tried diet, acarbose, diazoxide, octreotide, verapmil, insulin... nothing worked. I have had multiple blackouts and 2 major seizures along with plenty of close calls, leading to an intense feeling of anxiety all day. After all the meds I had a calcium stim test done which showed excessive insulin production when my pancreas was prevoked. So off I went to the pancreactic surgeon... a week later I was without 80% of my pancreas. This seemed to be the fix for the first month, then I was back to the same hypoglycemic hell. None of my providers know what to do, the best advice anyone can give is for me to have a total pancreatectomy and then become a type-1 diabetic to be able to control my insulin. Of course the surgeon wants me to do a mixed meal test (this week-finally) to make sure that it is really my pancreas that is causing the trouble... To top this fun my dumping syndrome has randomly come BACK... WTH!!! I was so happy that it just seemed to go away but no it started coming back about 6 weeks ago outta nowhere... Those of you with it know of the hell I speak... PLEASE if you have had anything like this let me know what you've tried or are gonna try... really anything! Thank you so much!!

[west4thavenue]

Hello, gb.

Unfortunately, I have no experience or special knowledge to share with you. You have conveyed your desperation very well and my heart breaks for you. I'm so sorry.  No doubt you are exhausted and at the end of your rope.

My best suggestion is to get yourself to one of the major diagnostic hospitals in the country, someplace like the Cleveland Clinic, the Mayo Clinic, etc.  Vets, please name some other facilities of this type.  It will help if you will tell us where you are located.  From what I understand, this option gives you the advantage of an entire medical team rather than one case manager/physician/specialist to arrive at a diagnosis and treatment plan.  This is not a convenient alternative, of course, but it seems your life has been completely disrupted by all of this anyway.  

Take all of your records with you.  Get a copy of your surgical report and your complete medical history. Begin insisting on copies of everything, especially your labs and test results, and keep it all together in a binder that you can take with you everywhere.  It makes everything much easier for you and the people trying to help you if you will do this. 

Please write back when you can and let us know how you are doing!

[caprice]

I cannot even imagine... you have been through it.

What Monica said, though. I am sorry that i have no suggestions, but it sounds like the more medical professionals you can get working on this, the better.

With the total gastrectomy, do you know if you still have your pylorus? Some of the things you said, I didn't understand, because I don't have a medical background, so, it's me not getting it, not you in explaining it. Just wondering if there is enough plumbing left to re-utilize the pylorus, so, at least the dumping might be addressed?

[goodkel]

Hello gb and welcome!

I have heard of a couple of DSers having hypoglycemic issues, but nothing to the extent that you have.

Monica gave you great advice, particularly,"My best suggestion is to get yourself to one of the major diagnostic hospitals in the country, someplace like the Cleveland Clinic, the Mayo Clinic, etc."

Meanwhile, I have contacted an RnYer who has had similar issues with hypoglycemia. She is not an active member here. If she doesn't want to post here, would it be ok for me to give her your email address so she can contact you directly?

[belle]

I have hypoglycemia post DS, but I was a diabetic before DS (no longer!) Was hospitlized after I had a 3 am seizure, which was traced to hypoglycemia after 24 hour glucose monitoring. Surgery wasn't suggested. I was sent to a nutritionist, and have been following her advice without another seizure 8 years later. Her advice was to never eat sugar without protein, avoid carbs in general, to eat every 2-3 hours with a protein snack between meals and at bedtime, and to limit alcohol use and eat substantial protein with it. I take a half of a peanut butter and jelly sandwich to bed and have a little of it at 3 am (I don't need to set an alarm, because I wake up sweating at that hour). The good news is that my HbA1c is 4.5 when it was 8, and I'm not facing kidney failure (my diabetic mother) or blindness (my diabetic cousin) or amputation. My care was at a teaching hospital (Cornell in NY) and I strongly agree with the recommendation to go to a first rate place. Good luck with this! I'm sorry you are going through this!