Hypoglycemia Help


#1

I have post-bariatric surgery reactive hypoglycemia.
Even when I was exceptionally obese, and pregnant, I never had diabetes. Everyone else in my family (mom, dad, sister, aunts & uncles on both sides) has Type 2.
My endo says I must have a ‘robust pancreas’. I’ve seen him one time.
I had dumping syndrome before surgery, so I never ate sweets or drank anything with sugar in it.
I’ve been having symptoms for two years now. I just got a FreeStyle Libre-- what a life changer! Now, I have more concrete data to analyze. Please help, if you can.

This is a basic overview of my day:
Overnight: I stay between 40-65. I don’t treat my symptoms at night unless I wake up in a full-blown sweat, which only happens sometimes.
I usually am between 50-70 when I wake up. If I do not eat, I stay between 60-70 all day.
If I eat, I usually spike between 110-140. If I eat a bunch of cookies, I’ll hit the 150’s, but never over.
After the eating spike, around 20-35 minutes later, I drop, usually to 40-50. My lowest has been in the 30’s, but usually it is high 40’s, low 50’s. Every time I eat this happens.
Taking 3, 5mg, glucose tablets will spike me back up to 100 within 15-20 minutes, but then, within 20 minutes of that, I drop back into the 40–50 range.
I feel terrible all of the time. I do have hypoglycemic unawareness. Sometimes I feel ok at 40. Sometimes 100 feels terrible. Is this a rapid up-down pattern, or is it normal?
If I treated every time I hit 50, I’d spend all day eating glucose tables, on a blood sugar roller coaster. Often, I just let it go and wait for my body to readjust to the low 70 range. This means sitting in bed, not moving, and feeling ill.
I actually can’t pinpoint a range that I always feel good at. The 100’s are like a shock to my system and I don’t feel good.
I only feel ‘okay’ if I do something like eat cookies allll day long mixed in with crackers and the like, or if I sip a soda all day long, which I hate doing. Of course, eating so much has led to a 50 pound weight gain. I have to lose these 50 pounds because I need a hip replacement (bad accident) and they won’t operate on me until I lose the weight.
At the same time this hypoglycemia happened, I also had a lot of health issues arise: First, swollen, painless lymph nodes (still huge after 2 years, but they say they are fine), then I had a second-trimester miscarriage, severe anemia, and then the hypoglycemia. The endo says these are all unrelated and my hypoglycemia is from my surgery.
I’ve not had an A1C yet. Yes, healthcare is that bad in Colorado.

Any suggestions?
Do I have to treat at a certain number, as in, can I keep not treating in the 40’s and 50s?
Why does it drop so low at night, even when I’ve not eaten in 8+ hours?
Is 70, my normal, okay?
My endo suggested he might put me on diet pills so I don’t suffer when I starve. This will leave me at 60-70 all day if I starve. Can I live this way?

Thank you, anyone, who can help me. I’m desperate.
Yes, I’ve seen the nutritionist and tried different dietary approaches.


#2

Wow, this is a really unusual situation. I have absolutely no idea what to do, but its a really interesting situation. How long ago was your surgery? How long do you expect it will take to loose that 50 lbs?

50 is definitely not OK. I would aim for 70. How does anybody feel about a couple tablespoons of peanut butter before bed? Maybe put some raisins in it? Maybe wake up around 2am and have a 2nd helping?

Do you live alone?

You could reach out to Joslin and see if they have ever treated anyone like you. The nearest one is Illinois. https://www.joslin.org/diabetes-information.html

You might need a Dexcom. Has anybody talked to you about that? https://provider.dexcom.com/education-research/cgm-education-use/cgm-basics/dexcom-cgm-overview


#3

Wow, sorry to hear you are going through this. @mohe0001 made some good suggestions. You definitely need to get some help. The link above mentioned following a low glycemic diet might help and a low carb diet in general. I know that is tough if you continually have lows. But maybe try eating low glycemic foods in small quantities and see if that helps at all.

" First-line treatment should be educating the patient to follow a diet with strict avoidance of high-glycemic-index carbohydrates and limited portions of any carbohydrate. In addition, acarbose (Precose, Bayer Pharmaceuticals) is often successful in patients with relatively mild disease to reduce carbohydrate absorption."


#4

Hello. Thank you for the reply. If I eat anything at night, I drop low during my sleep, so I try to avoid eating after dinner, which is difficult.
My surgery was just over 4 years ago. In the past, I’ve lost 50 pounds in 2 months by doing low carbs. I’d do that now, but I am forced to eat too much sugar to keep my blood sugar up.
My Libre is a CGM, it just doesn’t alert me, but it has been so helpful in trying to figure out what is going on.


#5

Hello, and thank you. Unfortunately, low glycemic foods cause my level to drop as well. It is the best so far as my fluctuations aren’t so extreme. I’m going to try a lentil breakfast, sunflower seed lunch, meat dinner diet all this week and see what happens.


#6

Do you have anyway of knowing if you had a high production of insulin before the surgery? Maybe its not a side effect of the surgery. Maybe you have always been like this and before, you were just able to overcome it by eating? Maybe that contributed to weight gain that caused you to need the surgery in the first place. I don’t know…I have always wondered if there were people out there like you.

So, you think that the act of eating or drinking (anything) triggers insulin production?

This is an awful idea, but what about IV fluids? If the medics shows up, tested your sugar, and you were acting goofy, they would give iv fluids with sugar in it. Has that ever happened to you?

It seems that you would almost be better off if you were a diabetic.


#7

This is a crazy idea, but what happens when you do intense exercise (I bet thats pretty tough w/ such low Blood sugar). But, some us us get high blood sugar from skiing, or playing paintball, or weight lifting. Do you know any physical things that increase BG? Sometimes our livers dump sugar or adrenaline increases BG. Mine regularly jumps to 350, so its not a small amount of sugar output.
Note: it could also have the opposite effect, so I wouldn’t try this alone. You want someone to be able to call 911 if you loose consciousness. Maybe have glucagon nearby.

I hope you are keeping glucagon with you and have people who know how to administer. Have you ever given yourself glucagon? What does it do?
Note: there are different types of glucagon. Some only lest ten minutes and some last much longer. Maybe some doses of something like that could help.


#8

It is a very unusual complication as it is pretty rare. I actually know someone else with this problem.

I don’t know if this has ever been done but in a hypoglycemic episode they should testglucose, insulin, proinsulin, C-peptide, beta-hydroxybutyrate, and sulfonylurea/meglitinide screening.

This is extremely tricky because the go to reaction is to treat the hypoglycemia immediately (for obvious reasons) but you have delay and get the blood first. From the sounds of it, your blood sugars become hypoglycemic with some predictability (post meals) so you could “set” yourself to be at the lab when a hypoglycemic episode occurs.

There are three things I know of that might help. I can’t totally explain why they would help but they do:

  1. Acarbose, which is a really old diabetes medication that isn’t used much anymore. You wouldn’t think that a diabetes medication would work for your problem but it is something they use.
  2. Sandostatin, (There may be couple of versions of this and I’m not sure which one)
  3. Diazoxide may be another option. My grandmother had an inoperable insulinoma (a tumor that secrets insulin) and this is the medication they used. (It may work for post gastric bypass hypoglycemia because it diminishes insulin secretion)
  4. The other things I have seen are a reversal of the bypass (which doesn’t always fix the problem) OR
  5. A total or partial pancreatectomy
    From what I understand #5 doesn’t always totally fix the problem but it reduces the severity of it.

#9

Okay, please keep us posted. I really hope this meal plan works for you. :four_leaf_clover::crossed_fingers:


#10

sounds yucky to me. :slight_smile:


#11

This is what my endo is thinking…that I was always just producing a lot of insulin, but it was masked by my overeating. I don’t think I am eating a trigger food. I make all of my food from scratch and did a low-glycemic diet the first year this happened, but it didn’t help. Thanks for your help. They are going to enroll me in a drug trial to see if that helps. Scary, but I’m desperate!


#12

Well, its tough to be the only one like you that you know of, I bet. You can be part of our diabetes community. Your similar to us. Let us know how it goes! Feel free to vent.