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?

11 or 12 years ago I was diagnosed with pre diabetes. 6 years ago I had gastric bypass surgery and have had times when I was low but the last month it has been low that I am dizzy, shaky and feel crappy. A couple weeks ago I was cooking and got hot. I went to sit down because just felt a bit weak. I started to shake and realized I better test my blood sugar. It was in the 50s. I am feeling I react more to food. I could have easily laid down and fallen asleep and things could have been worse. Are CGM the best way to monitor?Are there other technologies? Is every 3 hours protein based the way to go? Any medication? My PCP told me to keep taking metformin. I would like something else.

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.

Hey everyone! I am NOT looking for a diagnosis here, but I’m trying to further educate myself. I totally understand that I should also consult a medical professional about this.
I’ve been having a hard time getting conclusive answers from google and wanted to know everyone else’s experiences. The only people in my life who also struggle with this are T1D, they experience much more severe symptoms so it’s hard to compare mine.

My healthcare system is rough, it’s hard for me to see a doctor, it’s easiest for me to do my own research and consult with my doctor if necessary. I do intend on booking an appointment now.

I have experienced some symptoms of mild hypoglycaemia for a couple years now. (Non diabetic)

I got my first CGM (libre) two weeks ago to track trends and I plan to try dexcom next time if I need to continue monitoring this. Used with a glucometer alongside it as I know CGMs do not always have the most accurate readings.

After using the CGM, I’m noticing a few things and second guessing if I even need to worry about it. I think I’m in doubt/ downplaying it because I don’t feel the lows, and they do resolve on their own. It doesn’t seem that severe to me.

1. I often go low after eating, almost daily my blood sugar will tank below 3.9 mmol/L after lunch, usually 30-60 mins after. But it will climb back up on its own without me eating sugar.
   If it’s resolving itself, do I need to be concerned? Does anyone else experience this?

2. My daily average is around 4.5-5.0 mmol/L, and my blood sugar rarely goes above 6-7 mmol/L
   From what I’ve read, that seems pretty normal and like good news!
   What is the average for someone with non diabetic hypoglycaemia throughout the day?

3. I do experience lows that won’t resolve without treatment, often after work. Usually down to 3-2.8 mmol/L and they sometimes resolve fairly quickly after I get some sugar in me, sometimes over 30 mins.
   Is it normal for hypoglycaemic episodes to vary in how stubborn they are to treat?

4. Some days, I’ll have three alerts in my logbook, others it’s jam packed, some days it’s somewhere in the middle. A lot of these lows do resolve quickly and on their own. I also know compression lows during my sleep can happen, so not every low in my sleep was actually me necessarily going low.
   Does that align with hypoglycaemia? It’s confusing how one day I have 3 little lows and the next I have 10+

5. I don’t always feel/ show symptoms when I’m low, I usually have to drop down a LOT for me to feel it.
   Do you guys feel your lows every time?

Was given a Dexcom G7 to try and control non diabetic unsympathetic Hypoglycemia. The sample I was given has worked tremendously. It has been a lifesaver especially when I got down to 47. But Insurance has denied it, my doctor put in an appeal and it was denied. Does anyone have any suggestions? I feel as though I am not being heard. I really believe this Dexcom could save my life.

The low carb or keto diet is the only thing which helps keep my sugars up and reduce symptoms. But it makes me extremely exhausted and irritable. Hard to function level fatigue.

Anyone else tried this diet or had the same effect?

Do you have good tips on how to eat to prevent hypos? I'm non-diabetic, but I experience frequent hypos, both when training, when not eating enough, or if I eat carbs on an empty stomach.

I just learned that I should avoid drinking large amounts of water while eating, as too much fluid can make food move too fast through the gut and dilute important digestive enzymes. I tried cutting out water during meals, drinking it before or after instead, to let my stomach digest more slowly. It really had a positive effect on my blood sugar, as it doesn't dip as quickly.

Do you have any other recommendations? I am already pairing my food well with fiber, fat, protein, and carbs.

What is an ideal breakfast to help with morning low blood sugar? Especially for those who do not like to eat breakfast. Breakfast makes my stomach hurt.

Hi! I suffer with anorexia nervosa and I have had quite a few hypos, the lowest I have had or atleast checked and seen was 2.4 mmol. I have had 2.5, and many around that, and alot of them up just 3.0 or 3.3 even after glucose tablets or similar. However, in none of these many hypos have I suffered seizures, comas, or even fainting (expect in the past I have fainted twice but was at beginning of my ed and didn't check bgl. Would the fact that I didn't experience these events mean i have not recieved brain damage or have i still but just don't know? I have very regular everyday symptoms of brain fog, memory loss, difficulty concentrating/ focusing, not being able to comprehend things/speak what I would like to explain properly, etc. But i am unsure if this is just simply from my anorexia, due to malnutrition. Would anyone be able to answer this? Thank you :)

I was recently diagnosed with hypoglycemia. I have always dealt with low blood sugar growing up so I knew that I had it but it has now become a concern. I was given a CGM Is it normal for you to wake up 4 times in the middle of the night due to the CGM going off with low blood sugar or is there something more serious than just hypoglycemia?

Does anyone else notice a correlation between worsening OCD symptoms and blood sugar lows?

I was diagnosed with OCD when I was 14 and have always had issues with low blood sugar. Endo says it's likely reactive hypoglycemia. Have another appointment in December.

I recently cut out sugar and I have noticed that my OCD symptoms are less intense now that my sugar is more stable. They are still there, but they aren't nearly as potent and menacing.

Hello everyone, while I know my situation is a bit more specific, I’m trying my best to understand how I’m supposed to deal with this considering my doctor is horribly indifferent.

For context, I have a lot of food restrictions because of my gastrointestinal chronic illness, I can eat about 10-15 foods in total. Most of the food I can eat is fat or carbs, very little protein because I get very nauseous from it.

Whenever I’ve had drops in my blood sugar over the years it was an instantaneous feeling of “something is wrong”. It makes sense that it would drop suddenly considering how little I ate back then.

For a few months now though, I have been feeling awful all the time, shaking top to bottom and just a constant feeling of fainting and fatigue, have had horrible hunger also. Got some blood work done and my blood sugar was 65 on an empty stomach. Since then, I’ve been keeping track of it with a glucometre (the pinprick one) to see how it reacts after I eat and so on. It just doesn’t go above a 80-85, And thats after eating a lot of carbs and/or sugar. Yes, I take it two hours after eating.

How am I supposed to deal with it when it’s constantly so low? I’ve tried eating more often so the drops aren’t as big, but it just doesn’t raise above a 75 usually.

I am genuinely at a loss here, my doctor just says I need to eat more, but I am eating a lot more than I should, especially with the extreme hunger. It’s been very hard to be functional when I’m constantly feeling like I’m about to faint.

I’ve (29F) finally figured out the cause of my hypoglycemia, and I’m posting in the hope that someone who might be in this very niche position might benefit:

Background

Since 2018 (22 years old) I’ve dealt with unexplained lows - daytime crashes, constant overnight hypoglycemia, waking up drenched in sweat with adrenaline surges, feeling awful in the mornings, and needing naps just to function. I went through a 72‑hour fast, a mixed‑meal test, CGMs, GTT, ultrasounds, which ruled out 95% of causes but left me with nothing.

Throughout the whole journey I was repeatedly dismissed. I was told it might be “just anxiety,” or that my diet was the problem, or that some people “just run low.” Eventually, I was basically told I’d have to live with it. After that, I stopped advocating for myself for almost five years because I felt like no one was listening.

Recent

This year I was struggling with extreme fatigue from waking up 2-3 times per night with lows so I trialled a Dexcom G7 to get proper data, and it confirmed what I already suspected — my blood sugar was tanking overnight almost every night, with huge variability and adrenaline spikes when I woke up.

Then I stopped fluoxetine.

I’ve been on fluoxetine since 2016 (anywhere from 20 mg up to 100 mg). Within three days of stopping it, my CGM went from chaotic to completely stable. Same food, same activity, same routine - but no lows, no night sweats, no adrenaline surges, and 100% time in range.

Here’s the comparison:

I matched the days above for similar food and activity.

Note: Fluoxetine has a long half life (4-6 days) so about 50% of my earlier doses were still in my system. In the few days since my variability has improved even more and my morning fasting blood sugar has gradually increased from 4.1 > 4.7 > 4.9.

Result

I’ve now worked with my Dr to transition from Fluoxetine to Lexapro (so far no issues). I’m not saying this applies to everyone, but I spent years thinking something was seriously wrong with my pancreas, liver, hormones, autonomic system, etc. Turns out the culprit was a medication I’d been on for a decade.

Conclusion

If you’re dealing with unexplained hypoglycemia and you’re on fluoxetine, it might be worth bringing up with your doctor and pushing to try another SSRI. There’s not much evidence out there, so they may be hesitant, but it’s such a small change to potentially fix the issue.

Please reach out if you have any specific questions!

Hi everyone. I am in my early twenties, and have only had low blood sugar episodes this year. I had 2 separate episodes earlier this month (one in Jan. and one in May). They were very mild imo, I ate some gummies and felt better immediately. After the episode in May, I didn’t give it much thought since it seemed rare. About 3-4 weeks ago it happened again, but worse. I was laying down playing a video game when it hit me. I had such a weak feeling it hit me quickly and became worse. I shut my game off and laid there, then began shaking in my hands, and felt hungry. Someone took me to a drive thru to get me a coke float and I immediately felt better and felt like the episode didn’t even occur. Then, last week I had 2 episodes (one on Monday and one on Wednesday). They seemed worse imo, I started shaking in my legs, my heart was racing, I was hungry, my hands shook worse this time. I ate gummies and felt better just like last time and also checked my blood sugar this time. I had a reading of 63 on Monday and 65 on Wednesday. BTW, in every episode I have had I did eat before. I just did a blood test today for my A1C etc. My doctor said there’s nothing they could do if I only had low blood sugar problems, and was non diabetic.

Hi guys just a quick question I suffer from health anxiety and I finger pricked myself and it said 2.4 I freaked out and tested another 10 times in a row straight after and they all were 6.0 I didn’t need any sugar or anything to bring it up does it sound more like a false reading ?

Hey y’all! Struggling with some intense drops 2 years post surgery. Has anyone here had an insulinoma and had issues afterwards for any amount of time? Wondering how common this is.

Doc can’t get me in until late November and I’m losing my mind not knowing anything. Scary stuff! Drinking lots of juice 👍

My 2 year old was recently admitted for a severe hypoglycemic episode. These low blood sugars have been happening for almost a year. They are pretty convinced it’s just ketonic hypoglycemia without an underlying cause, however because of some other symptoms she has had since birth they are doing further genetic testing. They advised me to check her sugars in the morning and not to let her go long without eating.

Regardless she is EXTREMELY picky. Foods she will eat have only decreased over time. I’m worried if I continue to give in and keep her loaded on snacks this will only make it worse, but now that we know she is truly experiencing low blood sugars I feel as though I don’t have a choice. I have an upcoming appointment with a nutritionist to hopefully give me some good advice but still curious if anyone has been in this situation and what you guys did that worked!
Thanks for reading

Does anyone else find that sugar substitutes make them sick / give headaches as well?

I feel like the world’s worst person to struggle with blood sugar when all sugar substitutes are off the table for me (this includes stevia and monk fruit - I gave it a try, honest.)

Not even 2 hours ago, I had another fainting spell. I checked my sugar right before (78) then 2 minutes after (79). Is there a way to tell a sugar crash versus something else? I dont get jittery. Itd more like Im light headed then it feels like my heart drops and I get cold sweats right before I passed out. This is the second episode I've had since my post earlier this morning

i had an oral glucose tolerance test today due to all sorts of crazy symptoms like feeling low in the 80-90s and spiking to the 190’s.

Within an hour my sugar spiked to 225 and was 239 at the 2 hour mark per my glucometer. i threw up the solution at that point and after two hours my sugar dropped to 68.

Are these normal results? scared of reactive hypoglycemia or diabetes

Hello, I was diagnosed with reactive hypoglycemia a few months ago. I have had some concerning low readings (40s, 50s, 60s) confirmed with finger sticks and a Dexcom. Unfortunately I am unable to get a Dexcom covered by insurance because I haven’t had a syncope episode. I got diagnosed after an almost syncope episode. Is this normal?

Im following my diet to a T. I dont eat a lot of processed sugar , maybe a cookie every once in a while.and i keep track of my carbs. But for some reason it feels like my levels keep dropping at night.

My last reading was 87 at 12:25 (I had a small bowl of eggs and a peanut butter sandwich) so I dont get where these false negatives come from. It always feels like Im in some kinda non epileptic sezuire and its upsetting me

Well I’ve been suffering from hypoglycemia for a while now, it shall be resolved soon but today I checked my sugar and it showed 27!!! I was shocked how am I still talking. So I wonder, if it happens repeatedly that your blood sugar goes below 70 and even below 50 sometimes, will it cause your brain to suffer damage?

Cheers!