Help With Reactive Hypoglycemia in Non-Diabetic?

Is some of that attributable to hypoglycemia unawareness? The body adjusts to low blood sugar and people stop having symptoms, but does that necessarily mean it isn’t injuring to the body, especially the brain ?

Not the change I’ve witnessed since going strict Keto. 3 years ago I was in full hypoglycemic reaction at 2.6 (47 mg/dl). We’re talking ambulance + paramedics + trip to hospital. Now running as low as 2.0 (36 mg/dl) isn’t a huge concern for me - I generally just turn down the basal on my pump.

The only difference is ketones.

Pink, as per the link, if you are over 50, it’s not considered a hypo. eat if you have symptoms

Taking pigs down to 0.0 was an eye opener for me. It’s nice to know there is a buffer if you are caught out. Depending on the time it takes when you turn off your basal to come back up. I would glucose treat under 70 when on insulin

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That is odd they don’t kick in always. I have variable responses too. I often get very low without the full reaction but then wam it hits me. If I am occupied it can affect that. Bringing lots of your own snacks is a good idea. I have juice and glucose tabs etc everywhere. I can’t do anything like long walks anymore, shoopoing and doing stuff at home where I can stop and treat lows more easily is ok but I still have to not do too much. Especially after a meal with iob, sometimes I crash badly even with no activity.

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Wow, really? :frowning: I’m sorry to hear that!! It sounds very difficult. So you’re type 1, but I guess you don’t use insulin if you’re always low?

Usually when I’m low my body responds subtly. I usually get a tremor in my hand that I don’t notice unless I’m doing some fine motor skill, like trying to write something or maybe put a staple into a stack of papers. It’s really hard having enough food on hand to be at work all day and try to do things after work. I’m having constant bouts of nausea too lately which sometimes get worse after eating. Forcing myself to eat is getting harder too, because most of the time I have no appetite.

Hhhmmmmm interesting :thinking: Is it common to have problems with lows for type 1’s? My endocrinologist told me he worries about men whenever they are under 55mg/dl, but apparently women can be in the 20’s and be fine? :sweat_smile: I don’t really take his word for that though. Maybe diet is the difference and not the gender, though women are metabolically more complex

I’m guessing you’re T2 @pink_chiffon?

A lot of T1D’s often have hypoglycemic events (some daily or multiple times a week). It can be extremely serious when blood glucose falls below certain levels, resulting in seizures and loss of consciousness, after which autonomic functions such as breathing, heartbeat begin to shut down.

Hypoglycemia is not gender biased, every individual (M and F) has different thresholds for the blood sugar level(s) where they begin to feel signs of being low. And often that level can change depending on dozens of factors.

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I’m not actually diabetic, at least as far as I know. My endocrinologist is running some blood work for type 1, but I don’t actually know what is happening or why.

I have a coworker who is type 1, but she seems to only struggle with lows when she gives herself too much insulin (doesn’t adjust appropriately for meals/activity/etc). She told me her blood sugar goes high when she exercises (whereas my blood sugar goes low when I exercise). But maybe it depends on how many insulin-creating cells a type 1 individual has left.

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I know everyone is a little different but u can get ideas and help with symptoms. I have dilated bile duct, non alcoholic pancreatic insufficiency and reactive hypo.
I never could gain any weight through my lifetime. Had to get treatments because I stopped absorbing anything. Things that help creon( adjusted lower dose) IV vitamin, minerals.
Low wheat,dairy. Because of the reactive hypoglycemia I have to really watch my sugar. I can’t go low carb or low sugar anything. I do however lock in my sugar/ carbs with protein. If I do just Have one or the other I will be sick and crash. ( low fat has been important in my case). I finally started to gain some weight and it is the weirdest thing for me because I’ve been underweight my whole life.

The cgm monitors work best . I’m not sticking my finger more than twice a day. I’ve tried many CGM’s. Freestyle libre sensors are great just wish they would alert me during sleep. ( these freestyle are the most affordable and EASY to apply)
The guardian connect by Medtronic works the best if u have a phone for your monitor( I use iPhone so it combines everything in 1). Alerts me during sleep.
Personally I didn’t like the Dexcom because the monitor would need to be with u at all times or u would lose readings and have to re calibration. It does alert u though and good if u can’t/ don’t want a cell phone attached to your hip :grin:

I do have allergies, asthma and a low dose cortico inhaler helps me breathe.
It’s hard to work as things have gotten difficult with my health. I know I will not always have insurance but it helped save my life along with some good smart specialists and Pcp.

A recent meal that helped stabilize my BG is : cornbread, beans slight butter on cornbread with honey.

I keep glucose gummies ( I dislike the tablets are a choking hazard for me) they tide me over in between meals or to help if I crash during sleep to give time to get food. Juice boxes are a life- saver also .

I also don’t like leaving the house much anymore slight exertion can just catch me off guard. At home if I do a chore it’s easier to treat and monitor.

Ok I’m sure u have heard enough if u even got this far :smiley_cat:

Hi Beck! Thanks so much for sharing :slight_smile: Part of me is wondering if the problem is digestive, which would be consistent with your story as well. I have a history of digestive problems that were never properly investigated. I have a CT scan scheduled for next week, which I am actually really relieved about because I think it should point me in a more definite direction. I also wonder if it is a problem with the adrenals like Addison’s (people with Hashimoto’s are at an increased risk of developing Addison’s), since my adrenals kick in at weird times and don’t kick in when I really need them to :sweat_smile: but similar to you, I’ve also struggled with putting on weight especially since I went GF. I’m not underweight though so it may just be a matter of not being able to put enough food in in a day. I can’t eat very big meals. I get full too quickly.

I appreciate the input on CGM’s too! My doctor is trying to get a Dexcom just because the company keeps asking him to try one. I always have my phone on me anyway, so it would be okay for me. Not sure a CGM is entirely necessary for me, but my doctor wants to see what my bg is doing throughout the day and especially at night, because I’ve had quite a few episodes this past year of waking up in the middle of the night covered in sweat, so maybe low bg? Except when I test my bg once I’m awake it’s usually okay, so it’s hard to say if it’s low bg.

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This is interesting u mention seizures and autonomic functions. I had some of this with low blood pressure put on oxygen in the ER. The problem is they never checked my blood sugar but once. So every time they gave me food I don’t have my prescription enzymes even though my family told them all my medical history. They didn’t check the glucose after IV meds either and I told them no because I get sick off dosages or anything lowering my BG

I guess I will need to get an emergency kit for any event including ER . Depending on where i go they don’t listen.

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I thought about addisons because the cortico inhaler helped not just with breathing but the pain in my lower back( creon and low fat help with this also) but I eat small meals throughout the day too. I don’t know how to get tested ?

Along time ago I thought digestive also but I’ve been through so many tests, blood work( in the beginning no insurance so the county was having a hay day , I felt like a human lab rat :rat:)
:neutral_face: at least they are thorough. One HIDA scan found the dilated bile duct and possible choledochal cyst.

Technically one thing can lead to so many complications which is why it may look digestive.
Or maybe organ dysfunction is digestive it gets confusing because there are too many specialists. The biggest thing I have about medical community at large, is if I’m not functioning and fuel is low they are not understanding. it’s what they have studied and also get paid to do. Compassion and patience goes along ways. I’m never rude but I have to speak up, damage has been done. U can’t expect bubbly personality or normal social skills with the condition I’m in. Trying to regulate my own body autonomous function. It’s a full time job and I don’t get paid :smile::rofl:

This is something I’d really like to find out. I’ve had things like this happen and had no “ proof”
Laying flat is worse and I had the same thing. I would be low and then when I get up move around a little to get tested BG would be higher.
So sleep has something to do with it. When things slow down during sleep :sleeping: ( and going to long without eating)
I did test low before and then started to skip the BG fingerstick when I had “ proof of low” I would go straight to get juice or something.

I knew things had gotten really bad when my cat would insist I wake up which never happened unless blood sugar was low.

I had the symptoms of low blood sugar that got as low as 20,or 40 which is why I have to really monitor and prevent.

I am type 1 and on insulin. All type 1 need insulin at some point, right away is often best. Type 1 will die without insulin as I nearly did. I was diagnosed in dka and had serious complications. I have been on insulin since then. I am on a pump now.

Lows on insulin are usually much worse and are dangerous. It is not just a matter of dosing the wrong insulin etc., multiple factors affect what bg does and it is changing by the minute and hour each day for many of us. Early in type 1 in the honey moon phase it can be easier. Once you get to zero beta cell function it is very difficult and each pwd is different.

Try juice packs, stretch island fruit bars and glucose gels. Smarties are good too. You will have to figure out a way to carry what you need. I keep snacks etc at work.

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Any update on your results? I hope everything worked out for the best

Thanks so much for following up! That’s so sweet of you :slight_smile:

The CT scan came back without anything. Which I guess is good and bad. My previous doctor ghosted me. Didn’t want to deal with my case because it’s too complicated. Luckily my PCP is working on getting a pre-authorization for a CGM so that insurance will cover it. In the meantime, I’ve bought a Dexcom G5 from Amazon (refurbished transmitter and potentially expired sensors but so far no issues with receiving expired sensors). I was right about having lows at night. Sometimes into the 40’s. Today at work I also had a pretty bad low (went down to 56).

In terms of diagnosis, I am just assuming this goes back to the hyperinsulinism diagnosis I got as a teenager. It wasn’t treated for years which could have potentially been very dangerous considering I have had my bg go down to 29 (checked with glucometer).

In terms of treatment, I can’t find a doctor to really treat me. There aren’t a lot of endocrinologists in Hawaii and the best ones are either not accepting new patients or are consierge doctors who require an annual access fee to see them in addition to copays. It’s so messed up. I’m basically trying to figure out myself how I should feed myself and prevent lows. Every time I treat lows, I end up getting reactive hypos that are worse than the original low (that’s actually what happened today). So if I go low I try to eat something or just have to wait for it to come back up. Lows can be totally unpredictable. That’s all I got lol

Have you tried going on a strict ZERO carb, Ketogenic diet? Only foods with high fat and zero carb like eggs, hard cheeses, beef, pork, salmon. After a few days/weeks your body will begin to use fat (ketones) as energy instead of carbohydrates (glucose). This might stabilize your blood sugars significantly

Don’t wait for a doctor. I’m sure you’re already doing this but keep researching online and I’m sure there’s some stuff on YouTube as well about your condition

What island are you on? And are you part of Hawaii Pacific Health?

Hi Peep! Thanks for your encouragement! I actually started writing a blog about my condition, things I’ve found during my research and what works and what doesn’t. And you’re right, I really can’t wait for a doctor to help me with this…

I currently do a ketogenic diet with moderate carbs, but I haven’t tried it with strictly no carbs. A few reasons I have decided that might not be the best thing to do: 1. With hyperinsulinism, the body is “glucose blind”, and this effects its ability to convert fat into ketones. 2. I also have autoimmune thyroid disease, which I have read low carb diets can be very hard on a malfunctioning thyroid. 3. When I eat a no carb meal, my blood sugar goes down. For example, if I am in the 80’s and eat a zero carb meal, my bg will end up in the 70’s shortly after I start eating and won’t rebound at any point in time.

I guess I could give it a try with my cgm and just be super vigilant.