Cheryl, Volunteer Mentor | @cehunt57 | May 29, 2023
@lolaestelle welcome to Mayo Clinic Connect. I never heard of nesidioblastosis. (@scolio & @colleenyoung thank you for the information.) Have you been diagnosed with this? What are the symptoms? Is there any treatment?
They diagnosed me, and I have terrible symptoms of low blood sugar and sweating. No treatment for me as I have bad bowels and Any medication’s to help cannot be used on me.
Cheryl, Volunteer Mentor | @cehunt57 | May 30, 2023
@lolaestelle I am insulin dependent diabetic and at risk of experiencing hypoglycemia (low blood sugar). I have learned to always have a means of testing blood sugar (ie glucometer) available and a source of carb available to bring low blood sugar up. Did you know that the little candies “Life Savers” were created for that reason? I have found that it is really easy to overtreat a low blood sugar and then have a BAD rebound into over 300. What I was taught to do is test, consume 15 grams over carb, wait 15 minutes and repeat as needed. I like a liquid carb source like juice because it is quickly absorbed. The waiting is the hardest part because you feel like crap and can easily panic. If you have a partner to wait it out with you and make sure you don’t overtreat that is invaluable. I realize my situation is different so this may be of little help to you but I thought I’d offer. I’ve known people diagnosed with hypoglycemia and this is helpful to them. Also adding a bit of protein can help to absorb the carb without causing a spike in blood sugar. I like a tablespoon or 2 of peanut, a slice of lunch meat or cheese, cottage cheese. All these suggestions have to be considered in regards to your “bad bowels”. What if I may ask is that about?
Cheryl, Volunteer Mentor | @cehunt57 | May 30, 2023
I meant to say “of carb” not “over carb” in the middle of my response. I also meant to say “peanut butter” not “peanut” towards the end of my post. Peanuts are ok too but have to be chewed up. Not always a safe choice if blood sugar is really low. Sometimes I have hard boiled eggs on hand that work but you wouldn’t want to take the time to make them.
@lolaestelle I am insulin dependent diabetic and at risk of experiencing hypoglycemia (low blood sugar). I have learned to always have a means of testing blood sugar (ie glucometer) available and a source of carb available to bring low blood sugar up. Did you know that the little candies “Life Savers” were created for that reason? I have found that it is really easy to overtreat a low blood sugar and then have a BAD rebound into over 300. What I was taught to do is test, consume 15 grams over carb, wait 15 minutes and repeat as needed. I like a liquid carb source like juice because it is quickly absorbed. The waiting is the hardest part because you feel like crap and can easily panic. If you have a partner to wait it out with you and make sure you don’t overtreat that is invaluable. I realize my situation is different so this may be of little help to you but I thought I’d offer. I’ve known people diagnosed with hypoglycemia and this is helpful to them. Also adding a bit of protein can help to absorb the carb without causing a spike in blood sugar. I like a tablespoon or 2 of peanut, a slice of lunch meat or cheese, cottage cheese. All these suggestions have to be considered in regards to your “bad bowels”. What if I may ask is that about?
I had 7 bowel surgeries and 75 percent of my stomach removed. Had reflux surgery that went very wrong and I got ischemia in my stomach and part of my bowel. As this disease progresses, I can only eat about six or seven carbs sometimes a little more. The mayo did not do my surgery. Basically they gave me a gastric bypass and a sleeve surgery. I’ve had endless health problems since. I appreciate so much all this advice. Thank you so very much.
I had Gastric sleeve and had to convert to Gastric Bypass. I have been diagnosed with severe reactive hypoglycemia as a result from the bypass. I am seeking more information from a physician as Nesidioblastosis signs and symptoms seem to fit more accurately. I have tried Acarbose that led to awful gastric results. I cannot take Metformin for other reactions. I am receiving my first dose of Sandostatin LAR tomorrow. It is super off label for Reactive Hypoglycemia. If this does not work, I am requesting to go to Mayo in MN. Has anyone had experience with getting help from mayo for this condition?
I had Gastric sleeve and had to convert to Gastric Bypass. I have been diagnosed with severe reactive hypoglycemia as a result from the bypass. I am seeking more information from a physician as Nesidioblastosis signs and symptoms seem to fit more accurately. I have tried Acarbose that led to awful gastric results. I cannot take Metformin for other reactions. I am receiving my first dose of Sandostatin LAR tomorrow. It is super off label for Reactive Hypoglycemia. If this does not work, I am requesting to go to Mayo in MN. Has anyone had experience with getting help from mayo for this condition?
I just saw Dr Vella at Mayo in MN last week and had tests for the same thing. I have RNY in 2016 and the last year have has severe Hypoglycemic episodes. Last week he did the Mixed Meal Study and also the 72 hour fast. He is awesome! Diagnosed with postprandial hypoglycemia. Meaning when I eat my food empties into my intestines too fast causing reactive hypoglycemia 1-3 hours after meals.
He has suggested to start Octreotide injection 3x a day which I had agreed to, but doing some research I am not sure that is the route I want to go. He did mention a surgery also, where they could go in and suture the bottom of my stomach so food does not pass as quickly. I am thinking that may be a better option for me, but want his opinion and to do more research! Good Luck!
I am starting Octreotide today. Its other name is Sandostatin! This one is 10mg LAR. “Long acting release” you take it ever 28 days. If you don’t mind, can you share your decision! I will share my results of the Sandostatin
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Not me. But I was interested to look it up.
https://pubmed.ncbi.nlm.nih.gov/17263973/
Nesidioblastosis is when too many cells in the pancreas that make insulin or too much growth of those cells, a form of hyperinsulinemia.
@lolaestelle, are you experiencing symptoms? Has your medical team determined the cause of nesidioblastosis in your case to offer effective treatment?
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1 Reaction@lolaestelle welcome to Mayo Clinic Connect. I never heard of nesidioblastosis. (@scolio & @colleenyoung thank you for the information.) Have you been diagnosed with this? What are the symptoms? Is there any treatment?
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2 ReactionsThey diagnosed me, and I have terrible symptoms of low blood sugar and sweating. No treatment for me as I have bad bowels and Any medication’s to help cannot be used on me.
-
Like -
Helpful -
Hug
1 Reaction@lolaestelle I am insulin dependent diabetic and at risk of experiencing hypoglycemia (low blood sugar). I have learned to always have a means of testing blood sugar (ie glucometer) available and a source of carb available to bring low blood sugar up. Did you know that the little candies “Life Savers” were created for that reason? I have found that it is really easy to overtreat a low blood sugar and then have a BAD rebound into over 300. What I was taught to do is test, consume 15 grams over carb, wait 15 minutes and repeat as needed. I like a liquid carb source like juice because it is quickly absorbed. The waiting is the hardest part because you feel like crap and can easily panic. If you have a partner to wait it out with you and make sure you don’t overtreat that is invaluable. I realize my situation is different so this may be of little help to you but I thought I’d offer. I’ve known people diagnosed with hypoglycemia and this is helpful to them. Also adding a bit of protein can help to absorb the carb without causing a spike in blood sugar. I like a tablespoon or 2 of peanut, a slice of lunch meat or cheese, cottage cheese. All these suggestions have to be considered in regards to your “bad bowels”. What if I may ask is that about?
I meant to say “of carb” not “over carb” in the middle of my response. I also meant to say “peanut butter” not “peanut” towards the end of my post. Peanuts are ok too but have to be chewed up. Not always a safe choice if blood sugar is really low. Sometimes I have hard boiled eggs on hand that work but you wouldn’t want to take the time to make them.
I had 7 bowel surgeries and 75 percent of my stomach removed. Had reflux surgery that went very wrong and I got ischemia in my stomach and part of my bowel. As this disease progresses, I can only eat about six or seven carbs sometimes a little more. The mayo did not do my surgery. Basically they gave me a gastric bypass and a sleeve surgery. I’ve had endless health problems since. I appreciate so much all this advice. Thank you so very much.
-
Like -
Helpful -
Hug
1 ReactionI had Gastric sleeve and had to convert to Gastric Bypass. I have been diagnosed with severe reactive hypoglycemia as a result from the bypass. I am seeking more information from a physician as Nesidioblastosis signs and symptoms seem to fit more accurately. I have tried Acarbose that led to awful gastric results. I cannot take Metformin for other reactions. I am receiving my first dose of Sandostatin LAR tomorrow. It is super off label for Reactive Hypoglycemia. If this does not work, I am requesting to go to Mayo in MN. Has anyone had experience with getting help from mayo for this condition?
-
Like -
Helpful -
Hug
1 ReactionI just saw Dr Vella at Mayo in MN last week and had tests for the same thing. I have RNY in 2016 and the last year have has severe Hypoglycemic episodes. Last week he did the Mixed Meal Study and also the 72 hour fast. He is awesome! Diagnosed with postprandial hypoglycemia. Meaning when I eat my food empties into my intestines too fast causing reactive hypoglycemia 1-3 hours after meals.
He has suggested to start Octreotide injection 3x a day which I had agreed to, but doing some research I am not sure that is the route I want to go. He did mention a surgery also, where they could go in and suture the bottom of my stomach so food does not pass as quickly. I am thinking that may be a better option for me, but want his opinion and to do more research! Good Luck!
-
Like -
Helpful -
Hug
1 ReactionI am starting Octreotide today. Its other name is Sandostatin! This one is 10mg LAR. “Long acting release” you take it ever 28 days. If you don’t mind, can you share your decision! I will share my results of the Sandostatin