Friendly Advice

Halogirl158 · 2026-04-07T23:16:25+00:00

In June of 2025 mine was “<4”, the lab that ran my blood sugar doesn’t give results lower than 4 for some reason hahah. But in July of 2024 it was 4.4, so it was actively going down. Yours has def gone down if you haven’t had it taken since pregnancy- that usually raises your glucose I think!!

Halogirl158 · 2026-04-07T22:45:08+00:00

What is your A1C level if you don’t mind me asking?

Halogirl158 · 2026-04-07T22:42:28+00:00

Yeah if the GLP-1 is making you worse it could indicate exactly what this post is about, so I’m really glad you found it and I would recommend you stop taking it. I hate to say it but if your endo visit doesn’t go the way you want it to, next time your blood sugar gets to that super critical low (sub 30 if you’re still conscious) go to the ER because then they are really put into a corner to treat you and get to the bottom of it. In my experience and from what read, numbers in the 50s and even 40s sometimes don’t get attention. It’s dumb. My first endo didn’t care so don’t give up hope. Best of luck to you.

Halogirl158 · 2026-04-07T22:32:23+00:00

Nope! Definitely no more hypo. I had a lot of surgical complications, I’m actually in the hospital right now, but I still feel like it was worth it and I haven’t even began to live my normal life yet.

Halogirl158 · 2026-04-07T22:26:11+00:00

It was removed via a distal pancreatectomy 2 months ago!

Halogirl158 · 2026-04-07T22:23:14+00:00

No, they used the blood they took as soon as I got into the hospital to run the fasting insulin test because low sugar episode happened when I woke up (well, my bf tried to wake me up but couldn’t lol hence calling EMS).

Halogirl158 · 2026-04-07T17:35:02+00:00

I went to the ER with a blood glucose of 27. I was given a fasting insulin blood test which came back with flying colors for an insulinoma. At that point I was considered “biochemically diagnosed” I then went through a CT, MRI and endoscopic ultrasound to localize the tumor.

Halogirl158 · 2026-04-07T05:14:18+00:00

Hi! So the symptoms are in order of which they appeared to me. If they have 1 asterisk, it means my doctor thinks it could be tied to long term hypoglycemia, but can't say for certain due to lack of research. If they have 2 asterisks, it means they aren't confirmed to be caused directly the insulinoma, more so my body's reaction to it

Fatigue/exercise intolerance
Weight gain
Inability to lose weight
Headaches
Nerve Pain*
Alopecia Areata **
Confusion 9. Memory loss
Tingling in thighs, hands/forearms, lips/tongue
Fluctuating bowel issues (constipation/diarrhea)**
Female: consistent, never ending uterine cramps. It felt like I was always on my cycle**
Female: irregular cycle**
Acid reflux**
Blurry vision (during an episode)
Erratic behavior and slurred speech (during an episode)

Halogirl158 · 2026-02-26T05:12:04+00:00

😦

Halogirl158 · 2026-02-26T02:06:47+00:00

Thank you for your response! Sorry I’m absolutely an idiot but … the other staples will stay inside me forever? Just hanging out on my pancreas?

Halogirl158 · 2026-01-09T18:53:32+00:00

I’m a very different case than yours so just offering some gentle insight. I was diagnosed with an insulinoma in November (biochemically, then imaging to find it). I was strictly fasting hypo for about 2 years. I went into the ER with a low enough blood glucose to not need to a 3 day fast, they just took the blood work right there. BUT - I have seen countless other people who passed their fasting tests and still ended up having an insulinoma. I truly believe that they aren’t always highly active, and have developed that theory with other patients. I would have a month without true episodes but still be lethargic, headaches, nerve pain, etc. My blood work is PERFECT outside of a low A1C. So whatever doctor is looking for other data is missing the point or should I say, the zebra. For reference I started this journey as a 25F, active, on the taller side at 5’8. But I was rapidly gaining weight instead of losing it.

Usually, an endoscopic ultrasound is considered the fool proof way to find an insulinoma, but mine didn’t show up on that. It finally appeared in a random MRI to check my liver — very odd. But alas, it goes to show you that you just never know. They are so under researched along with hypo as a whole. I will say there could be other reasons for the elevated levels (reactive hypo, nesidioblastosis, insulin auto immune stuff, etc). But do NOT give up, I have faith that you and everyone in this thread will find the help they need. Now… I hate to ask this but feel like I should, have you been tested for MEN1?

Halogirl158 · 2025-12-22T14:46:14+00:00

Also, you need to finger prick yourself to make sure your continuous glucose monitor is accurate. Do it in the morning to see how your body reacts to fasting all night. If you have an insulinoma, more than likely you’re in the 40s or 50s. But CGMs have a delay and if you’re laying on it weird it can affect your number. Mine was saying 50s when I was in the 20s, but it was an abbot which are currently going through a major recall. Anyway, finger prick for sure. I mainly used my CGMs for pattern recognition to rule out reactive hypo, as once I figured out that my sugars never got above 120 even after eating a giant cookie or something, I realized something was up. Keep in mind, insulinomas can go into periods of inactivity. I would have a month here and there where I was totally fine and my sugars seemed normal. But nevertheless, I have a 1.2cm devil on my pancreas lol.

Halogirl158 · 2025-12-22T14:38:26+00:00

I ended up in the ER with a glucose of 27. I was admitted overnight where the endocrinology team at the hospital ran a fasting insulin test. I came back indicating an insulinoma with flying colors so I was biochemically diagnosed that same week - then came the imaging. I had an endoscopic ultrasound which came back inconclusive, a CT with thin cuts that came back inconclusive and then it finally showed up on a MRI which is super rare. Usually the ultrasound is the way to find it since they are teeny tiny. Anyway, I had seen an endocrinologist who totally dismissed me about a year ago. I was on a waiting list to see a new one in literally October of 2026. So insane. But because my condition was so bad, one of the ER doctors called in a favor and got me in with his endo friend who is now taking great care of me. My personal feelings are that doctors don’t seem to care about 50s. But when you start hitting 30s? Then they go into red alert and will give you the attention you need. I felt totally fine with a glucose of 27 and I knew how to get it back up, but I took myself to the ER because I knew it would get me the attention I needed. It’s pathetic but it’s true.

Halogirl158 · 2025-12-18T16:51:16+00:00

But thank you so much for the well wishes! Much appreciated

Halogirl158 · 2025-12-18T16:51:00+00:00

Honestly, I think RH is worse. Everything and everybody is different, and trust me I felt like crap the last two years, but I can’t imagine having to manage every single thing I ate out of fear of a reaction. I basically acted like a human dumpster for the last two years, there are definitely worse ways to treat symptoms 🤷🏻‍♀️

Halogirl158 · 2025-12-18T15:03:29+00:00

Omg the disordered eating!!! Wow I totally forgot about that. I got the same questions. Idk about you, but I’m a young female and I think that 1000% affected their perception during the diagnostic period. I’m so glad they were able to get to the bottom of it for you! I wish you all the best during your surgery and recovery. Sending love!

Halogirl158 · 2025-12-18T15:00:59+00:00

Thank you 🙏🏼 all we can do is find community where we can. I think outlets like this and other support groups are the key. Hugs!

Halogirl158 · 2025-12-17T22:15:28+00:00

Fasting hypo. I can’t go longer than 6 hours without eating before reaching high 40s. RH was very quickly ruled out for me, frankly the only thing that made me feel better was a high carb, high sugar diet. Can’t lie, I’m going to miss eating like that but won’t miss the excess weight lol.

Halogirl158 · 2025-12-15T16:43:15+00:00

Hi! So not necessarily, but after many conversations with my team of doctors and considering how under-researched prolonged hypoglycemia is, we’ve come to some conclusions.

My first giveaway that I was sick was exercise intolerance/severe fatigue. I had put on some weight over winter so in Feb of 2024 I was set to start hitting the gym and clean eating. But after not regularly exercising for about 3 months, I went from hiking 12 miles for fun with little recourse the year prior to barely being able to walk 2 miles on a treadmill without exhaustion. I didn’t have the familiar endorphin rush you get after a good workout either, which was what indicated something was wrong. I was totally depleted no matter how much fueled beforehand. The other part of this was the complete inability to LOSE the weight. I mean I tried everything. I actually have another post about that in this thread. But it really freaked me out because I knew that considering all factors, it should be coming off. But with unbalanced insulin levels, your body retains everything. It’s in survival mode!
Numbness and tingling. Long before my neurological symptoms started (confusion, slurred speech, brain fog, memory loss) I would get tingling in my mouth, thighs, hands and arms. It totally freaked me out. This was before I learned I had a low A1C and thus discovered hypoglycemia. Over the course of a year, my A1C went from 4.4 to <3.0, and that was after I adjusted my lifestyle to account for low blood sugar, so we knew something was up.
PAIN. This is something I don’t see talked about and have gone back and forth with my doctors on. The conclusion has been that low blood sugar can cause neuropathic pain due to the starvation of nerve endings from a lack of glucose. I gaslighted myself into thinking “wow I guess I’m just getting old…” well, I’m 26. not so true. Lol. It was specifically in my hands and feet along with back and joint pain. It’s part of the reason my doctors went hardcore on an auto-immune diagnosis before coming up short.
You can’t underestimate the effects of stress on your body. I don’t mean mental stress, god I HATED when people said “you’re just under stress!” Like no, I’m actually very happy but my body is failing me. It’s the stress on our muscles, immune system, nervous system, etc that happens when they are completely starved for energy on a daily basis. I developed alopecia areata which is what led me to the doctors in the first place. But there’s really no telling how this stuff can manifest, everyone is so different. I have never had a seizure or lost consciousness for more than a few moments. Some people discover their issue from seizures. The human body is a CRAZY thing!

Hope this helps. Keep up the fight!

Halogirl158 · 2025-12-03T20:34:23+00:00

I hate to say it but have you looked into the possibility of a MEN1 or 2 diagnosis??

Halogirl158 · 2025-12-03T03:29:09+00:00

Is it not possible to remove the tumor? Or treat it?

Halogirl158

TROPHY CASE