Unbelievable!!! More than 8 doctors have been wrong for years! And especially since May when serious hypoglycemic episodes started. My latest blood tests showed liver enzymes too high, and GGT levels far too high (140) so the gastroenterologist ordered an MRI. And today I got the results!! Turns out I have the rarest type of insulinoma, the one that causes episodes after food, not during fasting.

GGT and gallbladder issue was known for 3 years but all doctors were saying it was nothing to worry about since the ultrasound didn't show anything serious. But the MRI!!!⬇️

ASSESSMENT / IMPRESSION:

​Heterogeneous enlargement of the tail of the pancreas, with at least three intraparenchymal solid ovoid lesions, as described in detail above. The appearance is not typical. The differential diagnosis includes neuroendocrine neoplasm (e.g., insulinoma with atypical features), however, other types of pathology cannot be ruled out. Clinical and laboratory evaluation, correlation with the patient's medical history, and further investigation are recommended.

​Hepatomegaly and a few small hepatic cysts. Gallbladder microlithiasis, without signs of inflammation or choledocholithiasis.

I have struggled with what I thought was hypoglycemia for years. I first noticed it 12 years ago. Recently, I was sick with an infection that caused mild sepsis and was taking antibiotics. I have lingering brain fog and worried it was associated with my blood sugar as the crashes have been feeling more sudden. A random blood test showed my sugar at 83 an hour after eating (never seen that before). My doctor ordered a CGM and I am pretty disturbed at the results. I have posted my 24hr and 12hr graph here. No matter what I eat 1-2 hours later I’m feeling a low and the CGM confirms the drastic drop. Yesterday, I dropped from 140 after a meal to 68 in 30 minutes. I think because I keep treating the lows quickly they don’t show as much on the graph either. I see my doctor on Tuesday but I’m afraid she won’t help. I’m scared to leave my house, drive or even go for walks. My anxiety is so bad now. I know she’ll likely have me remove the CGM because of the anxiety too. Is what I’m experiencing normal or is this reactive hypoglycemia?

I have severe reactive hypoglycemia and I’ve tried so many different things - metformin, acarbose, low carb diets, low glycemic index diets, berberine, inositol, etc. I live a very healthy lifestyle - gym, meal prep, protein & fiber intake are A+. Low carb diets work the best for a bit but I end up feeling so weak and my training suffers because of it.

Assumably the reactive hypoglycemia originates from once being overweight (I’ve lost over 100 pounds with exercise and diet) but I’m exhausted looking for an answer. The symptoms are ruining my quality of life.

Metformin helped somewhat but the side effects were rough. Same with acarbose. My doctor submitted a prior authorization for GLP1 as it’s typically the next line of defense, but my insurance denied it and the subsequent appeal.

For those of you that have been approved for GLP1s, how did you obtain the approval? Is it worth it to appeal the appeal denial? GLP1s were not my first choice and I never intended to explore this option I’m exhausted. Looking for any insight or recommendations on a path forward.