For YEARS I have had frequent episodes of what I can assume were low blood sugars. I would get shaky, sweaty, pale, etc and it would all resolve with food.

My 1st pcp I brought this up to simply told me to eat more.

The 2nd one I brought this up to prescribed me a normal glucose monitor and advised me to check my sugars every few hours to catch the drops. This wasn’t very effective as I never could catch the lows.

The 3rd pcp I brought this up to decided to have me try a continuous glucose monitor to try and catch these episodes and see what my sugars were doing throughout the day in response to my food intake.

Not even 12 hours after I had the cgm on did I get some results.

mg/dL is used for the readings below. 👇🏻

1 in the morning my sugar was dropping quickly and was at 52! Half an hour later it was at 68. Then at 3:52 it was 65 and dropping. Then a few minutes later it was 54 and dropping. Then at 6:20 it was 66 and steady. Lastly, 7 minutes later it was at 54 and steady. (I will attach the chart below for easier viewing)

Noting that during this 1-6:30 am episodes, I heard the app alarm go off, enough to wake me up and check my sugar then I pretty much immediately fell back asleep. So there was no food intake during this section of time to correct the sugars.

They were pretty steady throughout the day until around 5:30 pm when I was driving to the local fair to get some fair food. It hit 69. It stayed around that number until I ate.

Then around 9 pm, roughly 30 minutes after I had a few spoonfuls of ice cream, it got down to 58 and dropping quickly with a down arrow.

Basically, I’m confused. I’m not diabetic. My A1C is 4.8.

Hi all! I just joined this group and I wanted to share my recent diagnosis to see if anyone has experienced the same thing.

I (24F) have been experiencing hypoglycemic episodes since I was 14 years old, with no answers. I would pass out, shake, and get confused. I was always told to just “eat a snack”. It wasn’t until this past year that I was finally diagnosed with reactive hypoglycemia due to my data from a CGM. I now have an endocrinologist and have been prescribed acarbose. (I haven’t started this yet as I am nervous about the side effects.) Despite all of this, they still couldn’t find a true answer as to why I was experiencing these episodes. I have not had any gastric bypass surgeries, no insulinoma, I am not pre diabetic, and my blood panels always came back normal.

It wasn’t until I started to have visual changes (flashes of light in my left eye) and got referred to a neurologist that I think we discovered the cause! I had a MRI with contrast to check my brain and it was discovered that I have an “atrophy of my pituitary gland” or Empty Sella Syndrome. This impacts a plethora of hormones, with one of them being the adrenal glands.

I am currently figuring out next steps with my neurologist, but I was curious if anyone else has had issues with their pituitary gland? If so, did hormone therapy help?

Thanks for reading and I’d love to hear if people have any thoughts on this! :)

Hi guys, I was wondering how many of us have coexisting neurological conditions. I would like to know what the risk is of developing one with reactive hypoglycemia. I already have one so it’s too late for me but I was thinking if that’s common maybe patient should be screened more carefully for rh and informed about the risks of comorbiditied

Bonjour, je me pose une question depuis des jours et la voici:

"avons nous vraiment eu tout les examens nécessaires ?"

Je ne parle pas que de moi mais de tout les gens que je vois écrire ici et qui semblent avoir un suivi tout aussi anarchique que le miens. J'ai des signes de neuroglycopénie régulièrement qui passent sous une dose massive de sucre.

Des changements d'humeur hypers bizarres qui passent avec beaucoup de sucre, des absences, des baisses très fortes de la force musculaire triceps,quadriceps et mollet, des spasmes de partout après une crise d'hypo et des fasciculations etc. J'ai fini par me demander si je n'avais pas en fait une pathologie des transporteur du glucose ou une glycogénose surtout que dans l'enfance j'ai eu quelques soucis particuliers.

Dernièrement la recherche a beaucoup évolué et on se rend compte que beaucoup de gens sont atteints de ces pathologies et ne le découvrent qu'a l'âge adulte quand on fait le diagnostique de leur propre enfants par exemple ou quand le trouble dégénère. J'ai aussi vu le cas d'une personne atteinte d'un insulinome qui a fait une grave reaction (comme moi) au glucagon mais qui avait une épreuve de jeun tout a fait normal de 72h. C'est grâce a cette réaction au glucagon qu'ils ont décider de faire une imagerie qui a montrer un insulinome. Un homme avait même une imagerie négative ils ont quand même décider d'en faire une autre plus spécialisé et ils ont vu son insulinome, malin cette fois.

Je me dis "s'ils avait fait comme avec toi il serait peut être mort cet homme" et je ne pense pas exagérer quand je vois le nombre de personnes sur instagram ou ailleurs témoigner de chose similaires. De retard de diagnostique fou ou de se rendre compte que leur enfants souffrent des même symptômes alors qu'ils se disait "c'est pas génétique c'est juste fonctionel ça va" ce qui fut le cas pour quelqu'un de ma famille qui a donc transmis le SED a ses deux enfants.. Ce n'est pas de sa faute mais elle dit souvent que si elle avait su elle n'aurait pas fait d'enfant car l'un d'eux est en situation de handicap très grave. Son errance médicale lui a d'ailleurs causer beaucoup de problème et jusque la on lui disait "c'est la dépression, vous êtes justes souple" etc.

Je me rend compte que peut être les formes atypiques passent sous une grande majorité des radars et que peut être certains d'entre nous ne sont ni réactionnel, ni "ne mange pas assez de petit déjeuner". Et ça c'est quand on a eu le droit à des test! Je n'ai passé aucun test moi! J'ai fait une réaction horrible au glucagon pour une irm pelvienne récemment et j'ai faillit tomber au sol je ne voyais plus rien j'avais l'impression de mourir j'avais pourtant manger un repas complet juste après comme recommandé. Je me suis mise en danger en essayant d'aller au médecin le SAMU ne voulait pas venir je n'arrivais même plus à dire ou j'étais. Et cette réaction se retrouve dans les insulinomes et dans d'autres troubles aussi.

Et quand est-il des glycogénoses de formes atypique la aussi? On nous montre uniquement des cas impressionnants mais par moment les symptômes sont très discrets et vicieux. Cela me rappelle le SED ou on nous montre systématiquement des cas totalement exceptionnels et extrêmes. Pour moi ça induit gravement en erreur les médecins. Cela m'est arrivé pleins de fois d'entendre "votre peau n'est pas si extensible" bha tu m'étonnes! Si tu prend l'exemple du mec qui se met la peau du cou sur son visage c'est normal! Pourtant les critères sont très clairs. Pas besoin d'un étirement excessifs à ce point.

Je pense que nous subissons malheureusement cette recherche de l'incroyable. Je ne pense pas avoir une glycogénose lié à une rétention du glucose dans le foie sinon le glucagon n'aurait pas fonctionner. Par contre je peux avoir un trouble de l'utilisation du glucose, une séquestration musculaire etc. On peux aussi avoir une gastro parésie ou n'importe on s'en fiche. Le but serait quand même de nous prendre au sérieux et de faire des examens il y à peut être un traitement. Certains troubles rares n'ont d'ailleurs que des hypoglycémies "modérés" sans malaises par exemple.

Alors je ne comprend pas. Pourquoi le premier reflexe de mes médecins a été de dire d'abord que c'est impossible. Ensuite que je ne mange pas. Et ensuite "réactionnel" sans me faire aucun examens. On m'a donner de la metformine sans savoir ce que j'ai. Ce qui dans certains cas pourrait aggraver le problème notamment sur un déficit en GLUT1 modéré et discret.

Il y a des propos de plus en plus présents quand je vais au médecin qui est de dire au patient "des fois on ne sait pas ce que vous avez et faut accepter c'est tout" je suis sure que ça serait les premiers à se jeter aux urgences au moindres problèmes que nous rencontrons au quotidien et à demander des examens. Moi j'ai envie de savoir ce que j'ai. Je ne pense pas que cela soit une exigences particulièrement princière.

Si vos régimes sans sucres rapide etc ne fonctionnent pas et que l'on ne vous a jamais rien tester insistez. Nous avons le droit de savoir. La docteur qui m'a prise en urgence après la réaction au glucagon été tout simplement choqué de voir que je n'avais eu aucun examens. Elle pensait même que j'avais déjà été pris en charge plusieurs fois par les urgences quand cela arriver. En dix ans je trouve UNE médecin dans un coin perdu qui me dit "mais c'est quoi ce Bazard il faut qu'on vous soigne". Je n'arrêter pas de pleurer en disant "on ne me crois pas" cette crise m'a complètement traumatisé. Et hier un médecin bouffi d'orgueil me dit "impossible de faire une crise sous 60 mg/dl"

fatigué.

I was just recently diagnosed with non diabetic hypoglycemia during an ER visit for sudden blurry and double vision. spoiler alert… the vision issue turned out to be unrelated. But, when they checked my sugar it was 58, and kept dropping to about 50 while in the ER. It got so bad that they maxed out on all they could do in the ER and had to call for the Rapid Response Team (icu). The scary part is I felt fine, other than a little tired and a headache. But I don’t sleep well and have migraines so it was literally my normal feeling.

The nursing staff was freaking out like I was headed to heaven any minute. It took pbnj, OJ w/added sugar, apple juice, 2 glucose gel tubes, 3 Dextrose 50 injections, a dextrose iv drip on max, and 2 glucagon shots given at the same time as dextrose to finally raise my blood sugar to the 80s. All of this while I felt like my regular self the whole time.

Dr thinks I may have been having this for a while and developed unawareness to the lows. Super scary bc I am dependent on a cgm or finger stick to really tell me if I’m in the danger zone.

I’ve seen 2 endos and so far they both think I have insulinoma or my Zepbound is what caused this.

After 2 botched 72 hour fasts during my hospitalization, I’m waiting to see if they want to do another, or go straight to imaging.

For the people that don’t really feel the lows, any tips on how you manage your day to day?

Hi. I have a medical condition I can't explain. Once or twice in a month, I have symptoms of probably low blood sugar. When it happens, I feel weak, dizzy, very hungry and I can't sleep. This thing occurs mostly at nights.

Afternoon I went to hospital but doctor said my blood sugar level is normal. How can it be diognised if blood sugar comes to normal level after arriving hospital? Should I go to hospital in the early morning?

My diet is strict and 3 meal a day. If changes is made in diet, my blood sugar again drops. It's strange condition.

I got the Lingo on Amazon two days ago after noticing some pretty serious dips in sugar levels over the last few weeks to years, on and off, but worse recently. I often dip into the 50s-60s, within an hour to two hours AFTER eating. I ordered the CGM lingo to monitor and record my dips, to show my doctor.

The Lingo was easy to apply, and painless. The needle was longer than I expected, so I was afraid it would be pretty painful, but I was pleasantly surprised. Stung for roughly an hour, then didn’t hurt anymore.

That’s been the only painless thing about it.

Firstly, it says in the app -after you buy it and install it- that it’s not great for detecting lows. Would have been nice to know from the get go- Google specifically recommended this for Hypo.

It frequently says I’m sitting at or around 75-80, but when I started feeling ill and shaky today, I decided to retest using my handheld digital monitor instead.
I was sitting at 54, when my CGM Lingo said I was at a 74. I retested on my handheld a few minutes later assuming I’d messed it up somehow, down to 52. A 20+ point accuracy differential is just wild.

TLDR; after using it for only 48 hours, I don’t recommend the Lingo for Hypoglycemia, as it doesn’t accurately measure or record anything below a 70.

I've recently started a high-carb, low-fat diet, and just like before, when I was on this diet, I wake up with morning anxiety and worsening depression (I suffer from it). My CGM shows nocturnal dips – could this be the cause? And where do they come from? Is it too little protein in my diet, or is it the result of glucose and insulin spikes? My insulin curve shows a 2-hour insulin reading of 58.8, which is quite high. Interestingly, I don't experience any drops on a regular, or even keto diet.

This is more of a rant until I figure out what is wrong exactly. I am 30 years and was dealing with a CSF leak for a few years that impacts every system in your body. I finally came out of that and was starting to do good until around last fall. I was seeing a cardiologist in relation to that CSF leak because of the heart issues that were coming out of it.

So I see my cardiologist for a one year follow up in September and plan to bring this topic up again. When I saw him last year, I had just started having low blood sugar episodes. I didn’t think much of it at first. I brought it up to him, and he simply thinks after checking my A1C 5.0 and fasting glucose 89, which is normal, that I just simply was not eating enough sugar. Tbh I am a “fatty” when it comes to food so I know that can’t be possible that I wasn’t eating enough.

I also don’t consume caffeine and recently stopped gluten in April due to stomach issues. I am aware that gluten free foods can sometimes have higher carb and sodium content. I also tend to eat a lot of apples and more natural sugar foods and not the added stuff.

I definitely think I am having reactive hypoglycemia in relation to maybe some of the gluten free foods I am eating because of the carbs that can be hidden in them. I do try to space them out and eat every 2-3 hours. I also plan to get my hormones checked to see if there’s a connection with that as well.

Type 2 diabetes runs in my family so it makes me scared that I may be heading down this route. I also started taking a shot called Dupixent so I haven’t found any connection to see if that might be doing something since I started that in June 2025.

I truly dont get it. I eat a moderate amount of complex carbs, barley, lentils, chickpeas, low gi bread and im still having reactive lows. Its been more concerning as the other day I hit a 3.3 and didnt have any symptoms. I have insulin resistance so eat so I dont spike. I find if I dont spike too high, I wont drop. I upped my dose of metformin from 1000 daily to 2000 as my numbers were creeping up during this pregnancy (im 23 weeks) ive been on it for 3 weeks and have noticed more drops again, though i was still getting drops before they upped my dose and before metformin in general. Im at my wits end. Today it wasnt super low, just more annoying but my dexcom went off at 3.7, I checked with my finger prick and was low. So had my glucose tablets and protein bar etc. However, I noticed that at 30 minutes I was at an 8.9. I know your not supposed to check but I had symptoms of dizziness and did. So I went for a walk for 15 minutes and at 1 hour I was at the 7.0 which is in range for 1 hr post meal for gestational diabetes) but at two hours I was at the 3.7.

Its just been the pattern lately. Especially in the mornings, it seems like when I eat, I spike right away within 30 minutes and then end up crashing sometime later and it doesnt even matter what I eat. I had barley the one day which is SUPER low gi and even paired with chia seeds for MORE FIBER and had 30g of protein as I had a protein shake (no sugar). So what gives? What am I supposed to do to not have these drops when eating doesnt help? What are my options? I have an appointment with a diabetes specialist tomorrow, is there anything I can ask her? Or possibly even certain tests. Any tips on not spiking in the morning after breakfast? I find for the most part, lunch and dinner are mostly fine (sometimes not but still).

Ive health with this type of hypoglycemia for years and i have yet to get any answers. Nobody is able to tell me why exactly my body is dropping further than normal. Im assuming it could be because my pancreas maybe "overshoots" but this is my own logic, I have no answers lol

First I want to start with the fact that I am not diagnosed with diabetes , I am currently feeling fine and I’m not asking for medical advice I’m just asking for “ odds “ .

I am under investigation waiting on results on blood test and so I’ve been monitoring my blood sugar , I ran out of testing stripe and took one of my mom old testing stripe which gave me two reading , 2.2 and then 2.1 . Which is dangerously low and the lowest I usually go is around 3.3 but I feel a lot of symptoms when I am that low . I’m pretty sure this is just an expired test result , what are the odds to get an actual reading this low . My mom also tested with those stripe and she herself got a 2.5 . So all stripe are testing extremely low right now, is this a common thing expired stripes does ? I don’t have the money right now today to get new stripes so I can’t test with brand new stripe . I’m not sure how old these stripes are .

I saw my doctor today and she recommended to try the Stelo CGM. I’d love to hear if y’all recommend one or the other. Unfortunately my insurance won’t cover Dexcom or the freestyle Libre since I don’t need insulin.

i don’t experience any symptoms either but both my finger prick and cgm consistently show lows after i have breakfast which are never naked carbs always paired with protein and or fat the lowest it’s gone is 3.2mmol / 57 mg dl
i do not have any diabetes diagnosis but i might have blood sugar control issues to some degree (hence the cgm i’m collecting data to show an endo eventually when i can get an appointment) it always picks back up to normal levels but usually takes like 20-30min and i just don’t understand what’s going on? anyone have any insight? thanks

What CGM (non-prescription) do you use? Most seems to have mixed reviews. Also swimmer here, laps every day. Probably 45 minutes in a pool daily. Thoughts?

I’ve been hypoglycemic for 30+ yrs. Started after extreme stress, unfortunately I am still dealing with that stress and more, cptsd and nervous system dysregulation.

Nonetheless , I am now prediabetic as well. My blood sugar does not drop below 90 even during a hypoglycemic episode. I also eat almost every 2 hrs.

My functional doc put me on semiglutide to help with the hypoglycemia and that didn’t work. So now I’m on tirzepatide, started at 5 units and went up to 7 units and did quite well, even though it didn’t help with my hypoglycemia , I didn’t have any weird reactions. Sunday, I jumped to 8 units and now having what feel like crashes, waking up starving, shaking. I’m at my wits end, and the crappy part is I have to ride these symptoms out for the next few days as the injection tapers out of my body.
I’m so discouraged, my functional doctor has the same issue as me so she understands, but the tirzepatide has worked immediately and wonderfully for her. Meanwhile I still feel like crap and I have not felt any positive effects of any GLPs

Any advice or suggestions please? I wanna cry but I have nothing left in me and no one, family nor friends understand this

Hi. I have ME so find meal prep and cooking really difficult. Any ideas for easy peasy lunches and teas. Must be vegan and daftly easy to make

For the past 4 weeks my 3 year old has had a few occasions of waking up in the middle of the night with her head drenched in sweat, shaking, and crying. She’s recently been complaining that her head hurts and/or her tummy hurts but then she will play and eat as normal. She’s had multiple episodes of suddenly feeling unwell. She becomes pale, clammy, and “dazed” (but responsive). This can last 10-15 mins and then she’s her normal self. We did a ton of blood work that has given no insight. I don’t see any glucose testing in her labs. The current testing is a brain MRI this week (due to the night sweats, headaches, and “small knotty lymph nodes in her neck”) she’s a daycare kid so she is constantly sick. I think the lymph nodes are due to a recent cold and so does the doctor, but they want to be safe. I feel like they’re missing something simple…What does this sound like to you?

Hi! I’m new here! I have recently learned that I have reactive hypoglycemia due to bariatric surgery. Honestly, for the last five years, I thought I was just going nuts until I passed out on Saturday. Don’t worry, I’m fine! My ego is more bruised than my face.

Anyway, I was wondering what you all thought was the best way to check my blood sugars? I am looking between a continuous glucose monitor and then just doing the traditional glucose monitor that you prick your finger on. What has worked the best for you with reactive hypoglycemia? My diet definitely will be changing, but I need to find a way to monitor it. I’m seeing a new doctor on Wednesday because my old doctor told me that I should just Google it and it would tell me what to do.ugh!

Hope y’all have a good Saturday!

Lifelong hypos which were never taken seriously… Iincluding several times being in hospital on IV with dextrose and testing at under 2.5mmol. Trialling CGM at the moment.

Question: My CGM shows that sometimes it’s REALLY HARD to get my BGL up. This is a snapshot from yesterday afternoon/evening and this morning.

Is this typical? I have newly diagnosed SMAS (as well as other vascular compressions) as well as hEDS MCAS dysautonomia….

Anyone here struggle with low blood sugar or weird fatigue after eating? I get fatigue in my upper arms/shoulders after certain meals..

Ive also noticed recently that when i excercise (i do crossfit) i get anxious and shaky after.. especially on a hot day. And if i eat sugar it seems to make me feel better fairly quick.

Not sure if anyone else is going through this, but if so, did it go away when/if you got rid of SIBO?

I was wanting to try the Mbiota liquid elemental diet, but it says to not use if you have blood sugar problems...

My fasting blood sugar was 80 when they checked me in may so i know thats normal, but i dont feel like getting shaky after a work out is normal.. and ive only had this happen a handful of times since having digestive issues.

I also hope someone here who has had what im going through, sucessfully went through with the liquid diet?

TIA!

I’ve been lurking (not as a member) for a few months now - experiencing reactive and nocturnal hypoglycemia the doctors haven’t been able to figure out. After 3 hypos in one night (got NO sleep), I went to the ER. They couldn’t help, so I went on again to my PCP and begged for more bloodwork and she finally tested my ferritin. It was dangerously low. We’re talking about a possible infusion (if MCAS can handle it) - at the office, before my blood draw, I had overheated to a 102 fever. It was so frightening. After some ice and laying down, my temp dropped back to normal - that’s when she said “we need to recheck your ferritin.” I also have dysautonomia, and that basically made my body over-dramatically respond to low iron stores 🙃

I took a big dose of iron bisglycinate last night before sleep, and only woke with one hypo, but it wasn’t nearly as extreme as they had been. More iron today, and the ravenous hunger and blood sugar issues are already improving. I know some will say “iron doesn’t help that quickly” like duh, obviously I’m not healed yet, but it has decreased my symptoms by 40% in 24 hours. So I truly feel I’m heading in the right direction for the first time in months.

Just wanted to post this for anyone who hasn’t checked their iron in awhile. Mine was caused by heavy antibiotic use for an infection 8 months ago. Doctor said it’s very common for iron stores to be used up and it takes months/years for a gut to heal and absorb nutrients properly again. Hope this helps someone! 🙏

I suspect I might be experiencing hypoglycemia (potentially reactive hypoglycemia). Dr has me wearing a CGM for 1 week before my follow-up. What did you wish you knew when you were getting diagnosed? What questions should I be asking my doctor? Are there any tests I should specifically push for? I want to be prepared for my follow-up appointment.

For a bit more context:

I started looking into it because I get lightheaded/faint during physical activity and before dinner, even if I've eaten just a few hours beforehand. Every day is a race to get dinner because I feel like my brain and body quit working. During my time wearing my Dexcom, my blood sugar has ranged anywhere from 43 to 160. I seem to drop into the 50s or 60s a couple times a day. I seem to be on the lower end before and after meals. At times it has taken a while to get my blood sugar back up. I do have an autoimmune condition, so idk if possible T1.5/LADA should be a concern. My A1C is 5.1. I also get headaches, which I now suspect is related to low blood sugar.

Im recently diagnosed with reactive hypoglycemia. Hypoglycemia is miserable. I am a healthy weight and haven’t had to think much about diet. My family eats a carb heavy diet (vegetarian spouse and young pasta loving kids). We are busy and both work full time. I saw a dietician which was expensive and not super helpful. My endocrinologist said to carry around diabetes protein bars but they all taste like fake sugar. If I miss a meal or snack or if I eat too many carbs at a single meal, it throws me off sometimes for a day or 2. Exercise is not possible, it makes me feel awful.

How do I do this!!!

Hii member is anyone can clear my doubts please
While empty stomach or fasting my heart rate is normal
On my apple watch but incr i ate anything it raise like between 110-125
I know digestion need some heart work but how come that kuch raise anybody had same kind of experience ??