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hyperinsulinemic hypoglycemia and severe malnourishment...can you help?

Mrs.morris

Member
I'm new here, I feel very isoliated struggling with mutiple bariatric surgery complications.

I had my roux-en-y surgery at age 18. I have been diagnosed with hyperinsulinec hypoglycemia (I am non-diabetic) as a post surgery complication, I've also struggled for several years to achieve and maintain my goal weight of 175. To obtain a diagnosis for my hypoglycemia, in June my surgeon put me on a diet of high protein, low carbs. This diet caused excess weight loss, so I just got out of being hospitalized for severe dehydration and malnourishment. I am now allowing myself to eat everything and when I eat more than 20g carbohydrates I check my blood sugar an hour after eating.

I've gained a little weight back, I'm still fairly weak and easily exhausted. I'm 31 and I was so desperate to get healthy when I was 18 and I was convinced that this surgery was the only way I could lose the weight (I was raised in an abusive environment, moved out at 17). This surgery has been the cause of me being disabled my whole adult life.

I feel very isolated by the rarity of my health issues. I keep being told that this type of hypoglycemia and malnourishment are very uncommon. I keep hitting walls with getting the answers needed or waiting months for referrals that can lead me to a proper diagnosis. It took 10 months to get a diagnosis for the hyperinsulinemic hypoglycemia, but to get that diagnosis I had to get far sicker because of my malnourishment and significant weight loss. I'm working on the short term of getting the help I need to handle the pain I have digesting, to battle the malnourishment. I have to keep my blood sugar testing kit on me at all times.

I got married last year, and my husband spends most of his time taking care of me. I want so much to be healthy enough to make us a family together, but I don't think my body will be able to accomplish that.

Does anyone else struggle with either of these 2 issues, or motility disorder on top of bariatric surgery complications? I feel completely isolated!
 
My first diagnosis came in 2012, I was given botox injections in my esophagus during an endoscopy. That's how I was initially diagnosed with esophageal spasms. I got sick during pregnancy with my son in 2009. I had exploratory surgery in May 2011. I recently met with a different bariatric surgeon that diagnosed the hyperinsulinemic hypoglycemia, I actually discussed it with my Surgeon last year shortly after the issue was discovered and he assured me that's not what was wrong and that my hypoglycemia was endocrine system related. He was 100% wrong. I do definitely have a motility issue in addition to post bypass complications.

Right now my big fight is my quality of life while getting that diagnosed. I did get told by my 2nd opinion bariatric surgeon that I need surgery again to diagnose a blockage or obstruction of some kind found during and upper GI series, but it's possible that what was seen was connected to my un-diagnosed motility issue. I'm waiting to meet with my new Neuro-GI specialist to discuss if I should go through with another exploratory surgery with a surgeon I just met in June.

I've read the statistics on hyperinsulinemic hypoglycemia post gastric bypass, it's at most 1-2% of patients. I'm just the 1% who lost the lottery. It's completely possible that my pain issues are motility related.
 
  • I do definitely have a motility issue in addition to post bypass complications.

  • Right now my big fight is my quality of life while getting that diagnosed.

  • I'm just the 1% who lost the lottery. It's completely possible that my pain issues are motility related.

I'm really sorry to hear about your struggles Mrs. I hope that you're able to nail down some answers and feel better soon!
 
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