Help With Reactive Hypoglycemia in Non-Diabetic?

Community
41

My mother has hypos too and she is not a diabetic. She is now 70. I am type 1 and my cousin is also type 1.

42

She could be type 2/metabolic syndrome. Hypoglycemia is not normal and indicates serious health problems

43

You may find the treatment for RH is a low carb or keto diet. To stop the carb spike followed by a crash.
If you are doing keto, you shouldn’t have any side effects by a low. Your numbers aren’t full hypo. under 50 for a male and 45 for a female is hypo.

Without symptoms, in a full ketogenic state. They have taken humans down to 18 and pigs to 0.0

( Medical) Hypoglycemia is defined according to the following serum glucose levels:
< 50 mg/dL < 2.8 mmol/L in men
< 45 mg/dL < 2.5 mmol/L in women
< 40 mg/dL < 2.2 mmol/L in infants and children
If the cause of hypoglycaemia is other than oral hypoglycaemic agents or insulin in a diabetic patient, other lab tests may be necessary.

44

From the Medscape link @jack16 provided above.

When hypoglycemia is found and treated in the diabetic patient, the patient may awaken and not desire transport. In view of the multiple causes of a sudden episode of hypoglycemia in a patient with previously well-controlled diabetes, it is prudent to advise transport and emergency department (ED) evaluation. [9, 10]

I will likely refuse transport the next time this happens to me. Emergency Departments (ED) deliberately err on the side driving patients well into hyperglycemia. This was so overdone in the care I received in the ED that it took me almost a full day to rein in the hyperglycemia.

I get their primary focus is survival but can’t they a be a bit more nuanced in their overall response? Once the patient is above 100 mg/dL and sustained monitoring confirms that safety, why do they continue to push an emergency hypoglycemia protocol? There’s not a one of them wearing their clinician’s hat; they’re all sporting the defensive legal cap.

I get why that happens but still resent getting run over by that mindless adherence to an emergency that has long been extinguished.

1 Like
45

I have the FreeStyle Libre. It helped me to figure out my patterns, what foods did what, and so on.
I’d suggest doing a very specific tracking of trying different foods and seeing what they do…try almonds, carrots, bread, meat, candy…you’ll get an idea pretty fast what does what to you and how fast your body reacts.
I’m the extreme version of you. My fastings blood sugars can dip into the 30s. My FreeStyle Libre doesn’t read below 40, so often, it just says “LO” or stops reading overnight/ after eating. Basically, I sit at 60 all day, every day. Eating a bowl full of candy won’t ever get me to 150. My time in range is 27%. The rest of the time, I am below 70. I never go above 150. Ever. Everything I eat drops me into the 50s. Say I want a piece of cake…birthday or some special occassion. After I eat the cake, I make sure to stuff myself full of nuts or meat to give me food which will release slowly and help my sudden drops. I eat, and within 20 minutes, I’m at 50…40…sometimes lower. I’ve read it gets worse with each Hypoglycemic incident, but I may have always been this bad. My doctor ignored my complaints of feeling like I was dying for a year and a half before he ordered me a glucose monitor…then I started popping 43s regularly in finger sticks. They sent me to Denver’s ‘expert’ in the matter. She disregarded everything. Like…oh well, try not to die…Healthcare in Colorado is abysmal. My A1C from a year ago (last time they took it) was 5.3. That was after a year of me eating NONSTOP. I’ve gained 70 pounds in the past year because I eat nonstop to keep my sugar up to the point where I’m not dizzy. So, eating nonstop (mostly cookies as it’s sugar plus carbs) got me to 5.3, essentially. I go through a giant bottle of glucose tablets a few times a month. No one has given me any solutions besides, “eat better”, which isn’t a solution for me.

46

Hi AMandy,

Oh my gosh, I’m so sorry to hear you’ve also been neglected when it comes to healthcare! I totally understand the frustration with doctors who dismiss concerns of low blood sugar. They only care if your blood sugar and A1C are too high. It’s horrible!

I’m lucky enough that my PCP suggested a Dexcom after I told her about my problems. Now I’m just fighting with her office staff to properly submit an insurance preauthorization. I would have asked for a Libre but I feel like you and me both really need a truly continuous glucose monitor rather than a flash glucose monitor.

My A1C is also quite low, 5.4. Yours is even lower than mine! I actually am having a hard time deciding what’s worse, fasting or reactive lows, because I often go low when I’m fasting but I am also likely to go low after eating (lately I am noticing everything is making me go low… carbs, fat, protein…) I avoid carbs as a rule. I need at least as much fat as carbs in a meal or my blood sugar jumps (I’ve had jumps as high as 186) and then crashes. My nighttime lows have been getting worse though (lately going into the 40’s and 50’s a lot…).

Have you been checked for an insulinoma? I had a CAT scan done this year on my abdomen to see if I had an insulinoma but I don’t know why I agreed to do it (and pay the $350 copay) when I had already been diagnosed with hyperinsulinism as a teenager.

So has it always been like this for you or has it gotten worse recently? I definitely feel like my blood sugar has gotten more out of control, but it could be because Hashimoto’s disease is destroying my thyroid so that can definitely make things worse…

What will you do from here? It sounds impossible to live your life that way! Have you been diagnosed with anything?

47

I’ve also noticed that it’s a lot more of an emergency when it falls quickly. For example, I’ve dropped to 55mg/dL quickly and ended up passing out/seizing but can coast down into the 30s and feel ok (not great, but not going unconscious).

1 Like
48

Wow. I thought Colorado had terrible care. Hawaii sounds like a nightmare. I’m returning to Pittsburgh this week to stay near quality doctors, so hopefully they can help me.

49

I read this: “I actually am having a hard time deciding what’s worse, fasting or reactive lows…” and was like…omg! Finally, someone who knows what it’s like! Everything I eat drops my blood sugar. It’s almost not worth it anymore. My first endo suggested putting me on diet pills so I wouldn’t suffer while starving, as just stop eating was his solution. How anyone can even call that a ‘solution’, is beyond me. I haven’t had a CAT scan. My doctor said only the 72 hour fast is reliable? They scheduled me for one, but I’m waiting until I move back East because they’d only do one at a hospital located five hours from my house.
My endo is the regional ‘expert’ on hypoglycemia. Two things she told me really bother me…kinda blowing me off that I sit at 60 all day, saying, “There’s 16 year old ballerinas out there who are always at 60, comfortable.” I’m nothing like a 16 year old ballerina. And she basically disregarded my Libre readings unless they were confirmed by a finger stick, which I try to never do. I hate doing the finger sticks. So…I was like…why the hell am I even bothering with the Libre if she doesn’t consider it? I stopped it for a few months, but it’s so helpful to figure out why I feel like I do, that I started using it again. I’m hoping I can get some sort of CGM with an alarm because I drop so low at night, but last night, I woke up and it read LO, and I just went back to sleep. I’m simply too weak and tired to do anything about it, so perhaps an alarm is pointless. My problem is, even sitting at 60, I feel weak. I feel best at 70. Over 80, and I have a lot of symptoms and feel quit terrible. My body isn’t used to blood sugars over 80, so it’s very difficult when I eat. Essentially, my life is a round-robin of working through feeling like crap because I’m hungry, low, or just ate and aren’t used to having such a high (actually a normal) blood sugar. It’s absolute misery.
I have Lyme disease, which is ‘everything’ and ‘nothing’ at the same time. But other than that, I was healthy until this started. When my low blood sugars started, my lymph nodes in my neck swelled up. I was 4 months pregnant. I went to my doctor, he said not to worry, I went home, miscarried, nearly bled to death, was anemic after that. So, at the same time this hypoglycemia started, I was pregnant, swollen lymph nodes, and then I had anemia. They fixed my anemia (iron transfusions for a year), but have no idea why my lymph nodes are still enormous. Again, abysmal healthcare in Colorado (Who has swollen lymph nodes for a year before their doctor even orders a single blood test?) Ugh! Do you feel terrible when your blood sugar is over 100, after you eat?

50

AMandy-

This is interesting and I understand frustrating at the same time. U definitely need a new doctor unless you feel they have helped with something important getting u a little stable. I will only put up with a doctors BS if they have actually done something for me and not brushed me aside like the first endocrinologist I was referred to ignored by BG “ 60 isn’t low”…2 weeks later during sleep BG dropped so low I was staggering into the kitchen for sustenance.

.literally every one is different and numbers vary. I feel my best at 100,80’ I can get migraines,70’s I’m sweating and producing an odor feel starving and shaky. It also depends on activity level makes everything worse. It’s not always the BG but the symptoms along with it.ive had low blood pressure and low body temperature so many times I lost count.

You DONT have to confirm all readings with a finger stick. If the device is working properly ( the Libre sensors 14 or 10 day ) are not as accurate the first day you apply. I do a couple checks periodically when I think it’s wrong.
It’s mainly to take medication when you need to verify.
Once it calibrates it will always read differently then a fingerstick because it’s monitoring the interstitial fluid.
Yes, now that I think of it you need a new doctor. :scream_cat:

A good PCP can also help.
I’ve had b12 injections,iron infusion,vitamin d prescription ( might need injections).
This year I was in the ER 3x times the recent visit they said infection in the urine and they gave antibiotics.also some type of CNS failure. I’m looking for an endocrinologist to see me sooner to look at the blood work,symptoms and blood sugar tracking.
I tried to switch my enzymes the gastro wouldn’t listen so I took a break because of the 3rd visit to the ER. I had to choose between my inhaler to breath or enzymes.the side effects of both can make my hypoglycemia worse.
Many times you have to do what you think is best because unless you find a doctor who is low cost And knows everything then you have to take care of you.

Diet and excercise is only a part of the equation.
You had an infection that could cause extensive damage.
This is the case for many people.
Low blood sugar doesn’t just mean “Diabetes “

51

I think Pink_Chiffon is from Hawaii.

As far as dilated bile duct ( found with HIDA scan, MRI and EUS) NOT found with catscan .Even with insurance my bile duct has not been monitored or fully discussed after the EUS ultrasound.
Years later they want another one. I need someone who does the test that also specifically skilled with bile ducts. I have not found a less invasive skilled help.
It was either what the county stated I might have been born with the problem or It could have been the car wreck I had a long time ago.who knows.
The county did find other things such as atrophy in the duodenum but you can’t follow up with them so insurance is the only slow way for me.

52

AMandy: Yeah, everything I eat drops my blood sugar, but definitely carbs are a bigger offender than anything else. Protein seems to cause some issues, too, though not nearly as badly as carbs. I’ve noticed as I’ve cut carbs out more and more, and I’m actually nearing a no carb diet at this point, I’m having a lot less reactive lows. I couldn’t cut out carbs cold turkey, I tried it a little bit and it was a disaster. I had to inch my way down. I’ve also noticed reducing my protein has helped keep my blood sugar stable. So now I’m basically eating low carb, low protein, high fat… I’m also eating more frequently. But while these dietary changes have helped my reactive lows/daytime swings, my blood sugar at night is still going low. I was so excited thinking I had solved my problems, and then last night my receiver was harassing me over my blood sugar being too low.

I personally would never do a 72 hour fast. It’s too expensive. And I wouldn’t trust the doctors here to know what to do if my blood sugar gets too low. If they administer dextrose, they might make it work!!! I’m actually planning to leave Hawaii because I need access to better health care. All of Hawaii is considered medically underserved, and I live here by myself, so I have no resources. I live alone and if something happened, no one would know until I don’t show up for work. It’s bad, especially because I’m almost out of sensors for my Dexcom. I had to go to Dexcom and get the billing codes for my PCP because they tried to tell me they weren’t going to do the preauthorization for me because they had “done everything they could” and couldn’t find the codes, like it was some unsolvable secret. I emailed Dexcom and they sent the codes right over to me… I have one sensor left, and after that I’m out and I don’t have the money to pay for another box out of pocket (I was lucky and got this box for $175 on Amazon, but I had to pay out of pocket for the transmitter and receiver too, and that was $450 total). My PCP finally submitted the preauthorization for insurance today but I have heard it takes 3 months to get approval. I’m hoping having submitted my Dexcom data with the preauthorization (and the fact that it says I’m a 3 out of 4 risk for hypoglycemia) that I will get approval faster… We’ll see!

Also, I agree with you. I don’t think being in the 60’s on a regular basis is normal. To be honest, though, if you’ve always been low and you think it feels normal to be low, you won’t even be able to realize that you could actually feel better. It’s too subjective for doctors to say “someone feels perfectly fine when their blood sugar has always been low!” I personally feel best when I’m in the 80’s or 90’s, but definitely dramatic swings make me feel awful.

Yes, if my blood sugar shoots up to 100+ after eating (which I have spiked up to 186), I am usually having heart palpitations, anxiety-like symptoms, sweaty palms, dizziness, tremors… It might be less to do with my blood sugar value itself and more the speed in which it’s going up and down. I’ve gone from 186 to 60 in 45 minutes. Sometimes I feel like I’m going to throw up when it swings like that, not just nauseous, like going to throw up. But my blood sugar will not stay over 100 for very long. It spikes and plummets… That being said, I’ve been over 100 for several hours before (super rare) as a result of adrenaline I guess ? And I didn’t feel sick from that. Food always seems to make things complicated and make me feel bad. I’m trying to figure out how I can trigger adrenaline more often to keep my blood sugar up. I almost thought about asking the doctor to put me on low dose steroids to see if that would be just enough of a bump to keep me in normal range. Not sure how much it will help with stability, but at least at night I won’t plummet into the 40’s. The problem with me is I always wake up when my blood sugar gets too low, so it makes for many really bad nights of sleep, which continue to exacerbate the problem. I’m sure stress and Hashimoto’s flare-ups worsen it too… My poor thyroid lol.

I’m so sorry to hear about your blood sugar problems! I know how frustrating it is to be brushed off and dismissed by doctor after doctor. I hope you can move soon so you can get some proper medical treatment. I am also constantly doubting myself because of it… Am I overreacting? Am I being too dramatic? Do I really need to concern myself with this? Should I just accept living this way? It makes me doubt myself so much… having support is so important. Hang in there! I feel like there are two things that would be important to find out: 1. if your pancreas is overproducing insulin, or if 2. your adrenals aren’t reacting properly to low blood sugar. I feel like I read people with Addison’s disease often present with low blood sugar. Have you been tested for Addison’s disease or had your adrenal response tested?

1 Like
53

And here I was with Hawaii on my top five places to move too! Before I read this, it held the number one spot!

Thank you for sharing!

I hope things work out better for you in the future!

54

Hi Tapestry,

Yeah type 1’s here have a really difficult time getting proper care. My coworker is type 1 and I’ve talked to her about this a lot. I know there is one endocrinologist who I was recommended to see who charges a concierge fee of over $1000 a year in addition to copays. Apparently my coworker’s type 1 friends got kicked out of her practice when the fees were introduced and patients refused to pay D: I’ve been through 3 doctors in the course of 6 months trying to find someone willing to take on my case. One of them ghosted me and one of them simply said I can’t help you with this. My PCP tried to blow me off just to get a preauthorization for a Dexcom. They were like we can’t find the codes and we’ve done everything we can, you need to go to an endocrinologist to get a CGM. I ended up emailing Dexcom and they sent me the codes within a week. So I had to give them to the PCP to get them to make the submission. My next endo appointment isn’t until October and I’m on my last sensor so I can’t afford to wait. The original submission was made in March and it took the PCP two months to resubmit. I’m hearing the wait for preauthorization is typically 3 months…

So anyway. That is my story about medical care in Hawaii.

1 Like
55

Hey Pink,

I have had Hashimoto’s for over 20 years. Only once did it go crazy in terms of swinging back and forth from hyper to hypo. It drive my doctor crazy. I did not have a blood sugar issues. Mostly feeling hot or cold, if I recall.

I do also have Autoimmune Gastritis which is linked to Hashimoto’s as well as celiac disease. You might want to get screened. Celiac disease is systemic and can affect multiple organ systems. I bring it up because only 20% of celiacs are diagnosed. The other 80% are not. Researchers know this because of the genetic markers that have been identified. I know not everyone has celiac disease, but it maybe worth investigating .

My doctors are always watching to see if I develop TD1, but it looks like I am only insulin resistant (TD2). I have been on a LCHF diet for over five years. It has been great for my blood sugar and does not affect my thyroid at all.

I hope you figure it out!

56

Villous atrophy? Did they say why? The most common cause is celiac disease. Celiac disease is systemic. It can cause pancreatic, liver and gallbladder issues that often resolve when celiac disease is in remission. The treatment is a strict gluten free diet.

Celiac is definitely genetic and is linked to autoimmune thyroiditis and TD1. Of course you can have other autoimmune disorders as well.

1 Like
57

Hi Cyclinglady!

Oh you have Hashimoto’s too! I have a genetic disease called hyperinsulinism that causes inappropriate release of insulin. Depending in the genetic mutation (there are several kinds), the mechanism for insulin release is different, but because the thyroid regulates metabolism and mine seems to already be quite damaged, I think it’s making my blood sugar imbalance problems worse.

I’ve never heard of autoimmune gastritis! I might have to look into that. I can’t be screened for celiac disease because I’ve been gluten free for 3 or 4 years now. I was actually diagnosed with a wheat allergy at 19 so I had to cut wheat out of my diet many years ago. Then when I was diagnosed with Hashimoto’s I was told to go strictly gluten free. It hasn’t really made me feel any better though to be honest.

I’m starting to find a LCHF diet seems to help keep me from having reactive lows associated with hyperinsulinism but I still have problems with fasting lows over night. I’ve also read LCHF can be hard on the thyroid so moderate carb high fat is better but I can’t tolerate carbs very well. I’ve also had to cut back on protein because it drops my blood sugar.

I’m kind of surprised my doctors have never been worried about me developing T1D considering I was diagnosed with hyperinsulinism (at 16) before I even had thyroid problems (thyroid started acting up at 18 but doctor missed it on the blood work and it wasn’t checked again until 10 years later when I was diagnosed with Hashimoto’s). I feel like I might be at increased risk for T1D because my pancreas is already malfunctioning and I have autoimmune disease… Hopefully I don’t but at least I am monitoring it myself now.

58

I was not implying that you have any of these autoimmune disorders, but when you have one, you can always develop more. Sometimes doctors just slap a label on you and can not see beyond that one diagnosis.

Take care.

59

If you are having lows other than 2-5 hours after eating. I would look for another cause, other than reactive H, Google will give a long list.

60

the county medical do the least they can and it’s usually outdated or restricted with getting a patient well
It takes forever to get a gastro appointment like (6months wait). I never got the results for the atrophy.after many years I finally was able to get a full time job to pay for insurance.
I thought in the beginning celiac , tried the diet( a long time - more than 6 months) it helped some but never resolved most problems.i was just wasting with malabsorption. I’ve had many injections and infusion of vitamins and minerals, electrolytes and for some reason corticosteroids for my asthma really help with other symptoms.it took all these treatments I guess to bypass some loss during digestion to finally gain weight( first time in my life being normal weight).:grin:
I know if I could have found one doctor to look at all tests done( including blood test) I could have had an answer probably 8 years ago.
It would take many visits but they just want to to give a symptom and call it diagnosis.
I’ve had to do a bulk of the work :sweat_smile:
but did find some good doctors along the way.
The freestyle sensor has been the most affordable and helpful for me overall.
I adjusted some dosage on medication which helped with nighttime lows but doesn’t eliminate 100%
Not all reactive hypoglycemia is someone’s diet. Mine is medication and condition of ( EPI) i tried so many different ways of eating :strawberry::tomato::green_salad::fried_egg:
it didn’t do much until I lowered my dosage of medication.