Questioning my health/Potential Pre-Diabetes?

For background, I am a 20 y/o, 114 lb woman whose been experiencing some weird on-and-off symptoms for about two years. I have a family history of Type 1, and a handful of family members have Type 2.

In 2018 I had a weird episode of what I assume to have been low blood sugar. I was out of town with family, and since we were travelling all day I hadn’t had the chance to eat very much. Maybe some fries, a slice of pizza, and fish, but not enough to satiate me. Early in the morning I woke up drenched in sweat, shivering uncontrollably (like internal tremors that wouldn’t go away), and super hungry. I was so hungry to the point that it hurt, and I don’t think I’d ever felt that way beforehand. I ended up staying awake for the next seven hours or so because the shaking wouldn’t stop, and on top of that I was urinating like crazy-- maybe four times an hour for 2-3 hours. I had two more of these episodes over the next two weeks after I came back home, but since then I haven’t experienced them. In my confusion, a family member suggested in passing that I might be diabetic, considering the low bg symptoms.

At this point I may have gone down the rabbit hold a bit with research and overthinking, but I found that as time went on, I began to have hypo symptoms pretty regularly. I would have to eat every 2-4 hours, and if not, I’d get blurry vision, shaky, sweaty, chills, weak knees, brain fog, and so on. Later on I came across some info about Reactive Hypoglycemia, and from there on I decided that my symptoms matched those of RH. Just to be safe I went to the doctor with my concerns. In the past she’d been dismissive of other health concerns I’d had (I am admittedly a bit of a hypochondriac, and can get wound up in obsessive thoughts/anxiety), and so when my fasting blood sugar came out to 90, she told me all was well and sent me on my way. After this I wanted to keep tabs on how I felt and bought a bg meter. In all honesty it probably wasn’t the most accurate, but I trusted it for the time being. I’d test in the mornings, and usually be between 70-85. As time went on I found that pretending nothing was wrong kind of worked. The hypos would come and go, usually sticking around for a few weeks-months, and then going away completely without any apparent reason.
Fast forward to the spring of 2019, and I began experiencing symptoms again. I bought a better bg meter and would test in the mornings and after meals. Something I found concerning was that my morning/fasting numbers were never lower than 100, and usually stayed between 108-125. For the most part I felt normal, but there are times at work where I’d have to sneak a bite of food, or come clean that I was feeling bad outside of my allotted lunch time. At this point I have not had consistent issues, but there are still some concerns. For one, I do experience the headaches, fatigue, irritability, shakiness, weakness, etc. while doing intermittent fasting (I won’t eat from 8 pm - 12 pm the next day). If I wait long enough the symptoms go away, but they’re definitely unpleasant. I also tend to pee more often; sometimes up to three times a night, and definitely several times a day. I also have floaters in my vision, black spots and flashes on occasion, and general blurriness that seems to be more of a recent thing. Sometimes my feet tingle and go numb without prompting, but it’s not a very present issue.

I do have health insurance, but I’m worried that I’m somehow delusional or exaggerating my own symptoms, and don’t want to go to a doctor to be told that I’m fine. To be honest I can’t tell if my bg levels are just on the higher side of normal, or if I need to address the issue, especially considering some of the other symptoms. I would appreciate some feedback on this, and hope that with y’all’s knowledge I can get a clearer picture of what might be going on.

  • forgot to mention that my fasting levels are still above 100 despite eating a low calorie, low carb diet for the most part, if that makes any difference.

Hi Renee2:

Welcome to our community. If you want to determine if you are diabetic, or pre-diabetic. You can just go to an independent lab such as UltaLab and have them do an HBA1C test. The cost is in the $21-$22 range. That will give you an evaluation of how your blood sugar has been trending for the past 3 months, although the result is a little skewed toward the past few weeks.

Normal range is below 5.7%, Prediabetes 5.7% - 6.4%, Diabetes is 6.5% or greater.

Here is a link to UltaLabs. I have no financial interest in UltaLabs and there are many other labs that can also do this test for you. I am only giving you a link to this one because it is the lab I use for all my tests and they are easy to work with and fully explain your results without needing your doctor’s evaluation.

https://www.ultalabtests.com/Shop/Items/Item/Hemoglobin-A1c-with-eAG?q=Mg%3D%3D

Some of your symptoms sound like reactive hypoglycemia.

Here is discussion on it.

@meee may have some suggestions.

These are helpful, thank you! I also wanted to add that my post meal numbers tend to be pretty high. Usually in the 170-190 range, but I don’t think I’ve ever tested above 200. I will definitely look into the hba1c test and go from there if things look sketchy.

So sorry you are going through this. I also have type 1 and hashimotos. Both diagnosed much later in life, type 1 first. When I started treating the hashis, my bg management got a lot better. I had to argue with my endo about it. Finally When I added t3 to t4 another argument, lol, things improved even more because I don’t convert t4.

I also had pretty bad low blood sugars about 15 years before my type one diagnosis. I do not think that it was reactive hypoglycemia though because it did not happen after eating a lot of carbs or anything like that. I used to go for long periods without eating when I was active so I thought it was from that. When I would eat some carbs protein and fat it went back to normal but I had readings as low as 39 then.

I am not feeling very well right now since I have covid and double pneumonia and I’m having back pain so I will try to write more later if there is anything more I can add to help you.

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Hi Renee! I apologize for the very delayed response. Things have been really crazy. I moved 3 times in the past 6 months, so I’ve been kind of MIA.

I wanted to reach out to you because what you’re experiencing sounds a lot like what I have experienced. Like you, I’m 110lbs and 4’11, so weight is certainly not an attributable issue. I definitely have RH, which was diagnosed 12 years ago by an oral glucose tolerance test. During the same round of testing, I was also diagnosed with insulin resistance. I don’t know if RH is by default attributed to insulin resistance, but I was also diagnosed with lean PCOS (quite different from PCOS associated with obesity) at that time and developed thyroid issues two or three years later. So I have had a lot of stuff going on that affects metabolism for quite a few years now.

I have also had the issue of BG testing always coming back normal when I get tested by the doctor. My fasting glucose and insulin levels are usually normal when I get blood work done, so doctors have been very dismissive of me. When I was doing finger stick glucose monitoring, I would also get frustrated that my numbers would be normal even when I don’t feel normal. I actually was reading very recently that this is common with RH, because BG can change rapidly and the body will adjust for lows, so by the time you take a reading it may have already changed. Hunger pains are also not a good indicator of low BG for people with RH, because by the time you’re hungry it’s usually already too late. Your BG has gone low (and potentially rebounded with adrenaline). You have to figure out how to get ahead of the curve.

Like you, I also experienced severe nighttime lows. I would wake up like I was having a panic attack (I have no history of panic attacks) and I would be so confused about what was going on. I was eventually encouraged by an endocrinologist to do an at home mixed meal tolerance test. This was a complete disaster. I looked up the protocol and used the appropriate mixed meal drink, but I ended up throwing it up because of how quickly you have to drink it all. That results in my most dangerously low BG episode that I’ve had yet. My BG dropped to 28 and I was on the verge of passing out. I was lucky that I set all of my BG check alarms for the test in advance and hadn’t turned them off, otherwise I wouldn’t have thought to even check.

On the topic of intermittent fasting. I tried for so long to do this. Everything I read told me I should feel better and have more energy and it’s so healthy for you. So I bought into the idea that one size fits all and it’s something everyone should do. And I still scold myself for buying into that, because I almost felt shame that it doesn’t work for me. I can’t do it. Intermittent fasting creates more instability for my BG and I just feel even worse trying to make it work. I’ve read other people with RH say they just can’t do it, and nighttime fasting is problematic for them as well.

I have also experienced the numbness/tingling/pins and needles sensations. To add one to it, I was experiencing skin burning sensations as well. They could be wide spread and would be extremely painful. Sometimes I would just hold my arms in my freezer to get some relief. My current endocrinologist said this can be caused by insulin resistance, where muscle tissue gets irritated. The burning has gone away, but I still get the tingling and I often get pins and needles where it feels like a bug bit me or someone pricked me with a needle or something.

All of these issues, which really came to a crisis point a year and a half ago, led me to start using a CGM. The CGM brought me a lot of clarity on what was going on with my BG and explained a lot of my symptoms. Also, it showed me just how often I was going low, debunking all my “you’re fine” blood sugar readings. It showed me why exercising was such a challenge (after 10 minutes of lifting 2lb weights, my BG tumbles from mid-80’s to low 60’s–that is a stumbling block for any exercise program!). It showed me why I was waking up in the middle of the night covered in sweats. It even showed me why I felt like I was going to pass out after a shower (I still have no explanation for this, but I often experience a BG drop when I shower that leaves me dizzy, lightheaded and just generally feeling junky). I paid for a Dexcom G5 out of pocket for a few months, but I have new health insurance now and was able to get covered for a Freestyle Libre. It’s not a true continuous glucose monitor, but for me personally, I don’t find true continuous glucose monitoring anymore helpful than flash glucose monitoring. By the time my BG is dropping, it’s too late to do anything about it and I have to wait it out. All of my actions have to be preventative. It’s too late by the time my BG is already falling (which adds to the frustration of managing it, but I have read similar things from other people who have RH). You can make the Libre truly continuous by buying a third party transmitter if you would find it useful, though. In a way I kind of like the Libre better than the Dexcom too, because you don’t have to calibrate with a finger stick reading. I found this was really an issue for me because my blood sugar is always so unstable, I was never sure how much I could trust the calibrations I had to do. And if the calibrations were off, it made all of the readings inaccurate.

I now follow a moderate carb/high fat/moderate protein diet. When I say moderate carbs, I will eat anywhere between 50-120g carbs a day. That’s a pretty big range, but most days I probably stick toward the lower end of it. I know truly low carb diets can be problematic for a lot of women because they end up losing their period, which can create other issues. I’ve been on this kind of a diet for two years now, and I still have not been able to improve my RH, insulin resistance, or carb tolerance. I don’t eat rice or any kind of grain products. When I do treat myself to, say a pizza (because that’s what I did last night haha), my BG didn’t spike high (I think 135 was the highest it went for that meal), but and this is important, my BG dropped to 60 after and ran low all night. That tends to be the consequences of that. I also have these unusual BG patterns where, as is the case with the pizza, my BG will spike twice after a carb heavy meal, so it has like an M pattern to it. I haven’t been able to find any great info online about what that’s all about, but I imagine it’s insulin resistance.

Anyway, feel free to reach out if you have any questions or want to discuss anything! I’ve been going down a similar road as yours for a while now, so I’m happy to exchange info and suggestions :slight_smile: