Revision Needed 4 years Post RNY Severe Hypoglycemia

Is there anyone else here who is going through what I am going through? It has been an incredibly bumpy road! For the passed two years, I started having crazy symptoms! I saw multiple doctors and no one could tell me what was wrong. I wrecked my car, started acting completely unlike myself at times and I started to think I was suffering from some sort of mental illness. I even went as far as to check myself into a mental hospital and they told me that I didn’t need to be there and that my mental state was fine but my body was going horribly wrong and fighting with me!

Here are some symptoms I was experiencing: lack of coordination, stumbling, confusion, extreme forgetfulness, night sweats/shaking, day sweats/shaking, visual disturbances, extreme anxiety, and eventually I began having seizures and even have passed out a couple of times.

Up until about 7 months ago, I didn’t know it was from my blood sugars. Like I said, doctors kept telling me basically good luck or We don’t know what to tell you. I had moved out of state and the drs there weren’t any help at all, so eventually we moved back home to IL where we are now and are beginning to FINALLY get some answers!! I have an amazing endocrinologist who actually participated in a study with post bariatric patients who have experienced these blood sugar issues. She worked closely with a dr who has since moved to Kansas City. I have to have a continuous glucose monitor on at all times and basically have to eat or drink all day long in order to try and keep my sugar levels within a normal zone of 80-140. As soon as I eat, my sugars go up but then drop suddenly and leave me with the crazy symptoms all over again! All night long, my sugars are below 50 usually. I have crazy sleep disturbances and will sweat and shake in the middle of the night. I barely drive anymore unless I’m eating while I’m driving because my sugars are so crazy! And because I pretty much have to eat all day long, I was not able to get down to my goal weight of 140lbs and started actually gaining weight back. I have lost over 200lbs but this is extremely frustrating to be so unhealthy now after all I have done! My number one goal is to be healthy obviously! I want to be able to work out again or even walk down the street without almost passing out from my sugars dropping! But also, I want to finally get to my goal weight and live a normal life!

I was told I needed a revision from bypass to sleeve, but it’s extremely dangerous. I saw a dr who said they don’t have the proper facility to do it and she referred me to the dr who originally did my surgery. That dr now takes my insurance again (they weren’t last year which is why I sought out other help), and has the facility, etc but he won’t perform the surgery on me. The dr who did the study and has since moved to Kansas City WILL do the surgery, but I would have to pay out of pocket $18,000-$21,000 BEFORE surgery to have it done ☹️ So now I’m on the hunt to find a surgeon who will accept my insurance and also do this surgery to help fix me. I just want my life back! I don’t want to die. But leaving things as is, I can die. My family has endured so much with all of this.

Replies

  • Pamela_Sue
    Pamela_Sue Posts: 563 Member
    I wish I could offer some help, but am sending support. I have diabetes and moderate hypoglycemia. I have been dieting for about a year now, and have definitely noticed that my hypoglycemia crops up much more often when I am losing weight. I have to find a very fine line between protein, moderate carbs, keeping my calories down, but not too low of calories or I crash. I go into a blood sugar crash at 80 or below, so I don't know how you manage at 50. Perhaps your hypoglycemia is related to your weight loss? That is my only thought.

    I am a nice person, but when my blood sugar crashes, I morph into a nasty beast. Wishing you the best.
  • cassybaca
    cassybaca Posts: 23 Member
    Thanks so much for the response! I have felt crazy for what feels like forever and I’m so happy to finally have validation that there is something indeed physically wrong- I just wish someone can now fix me lol. My sugars regularly go below 40. I have to literally eat all day long. It’s so frustrating!
  • NovusDies
    NovusDies Posts: 8,940 Member
    People do not realize all the areas that blood sugar affects. Mine is reactive so eating high carb without protein has dropped me into the high 40's. It has been awhile so I do not remember the exact number anymore. I have developed a pretty solid routine that keeps it managed. In fact, I have not been back to an endocrinologist in 7 years.

    Have you been to a registered dietitian? I assume you have but I thought I would ask just in case.
  • cassybaca
    cassybaca Posts: 23 Member
    Yes I have seen a dietitian and I’m following the protocol for reactive hypoglycemia but it doesn’t help. No matter what I eat, how many carbs, etc. My blood sugars drop within 30 minutes back below 60. I’m on acarabose 50 mg 3x a day as well with no luck.
  • fit_chickx
    fit_chickx Posts: 571 Member
    edited February 2020
    @cassybaca

    Your reactive hyperglycemia sounds more severe than mine. I hope you find what works for your health.

    I am a sleeve five years out and have reactive hypoglycemia. Common complication from any bariatric procedure. I am managing it. but, I still have times I can follow my protocol ( eat every two to three hours, low glycemic carbs and drink watered down orange juice) and my blood sugar will rise and crash for three hours then stabilize.

    I sent you a friend request. Keep me updated on how you are doing.