For those who deal with hypoglycemia, do you have any advice for dealing with fatigue after a bad low?
My hypoglycemia issues are not related to diabetes fwiw. That said, I tend to get hypoglycemia a few times a day. If I catch it quick enough and treat, it's usually not a big deal, but if I get too low (maybe once I get into the 50s mg/dl), then after treating (usually about 15 minutes later), I get so. freaking. tired. Like, barely able to stand up exhausted. Currently dealing with this as we speak, and it's very frustrating. My endocrinologist told me it's normal to get tired like this while recovering. I'm curious if anyone else deals with this? If so, do you have any advice for dealing with the fatigue?
Tildes might be too small of a platform for this. If no one deals with hypoglycemia here, please feel free to remove it. I thought with the prevalence of diabetes, it would be likely there are folks who encounter this.
It seems you are being appropriately worked up / managed by an endocrinologist, so feel free to only reply if you feel comfortable sharing, but I'm curious as to what is the etiology of you having hypoglycemia a few times a day? Outside of significant adrenal insufficiency, exogenous insulin/medicines, or a tumor (insulinoma) I'm wondering what would cause you to experience this with such complications?
To be honest, my endocrinologist isn't 100% certain why this is happening. It just seems my body isn't stabilizing glucose levels once they begin to drop (or isn't doing so quick enough). So pretty much 4 hours after I eat, my blood sugar will be low again, and will just continue dropping unless I intervene. Similarly, in the morning it will be low from overnight fast (50's usually). I do have elevated levels of beta hydroxybutyrate when they've tested my blood in the mornings, which as I understand indicates ketone bodies/fat breakdown. So it's doing something, but just not doing it quick enough, I guess. He has ruled out Insulinomas which is good.
I was extremely malnourished for a long time (2 years) due to GI issues. Back then we knew it was malnourishment causing the episodes, as I had very little body fat, and was unable to eat enough to build up any glycogen reserves. However, I have been at a normal weight for about 6 months now, and this still continues daily. My endocrinologist thinks it's related to how malnourished I was. He wants me to continue gaining weight, but I'm losing hope that it's going to do much.
The interesting thing about all of this, is I've noticed that when I'm pretty low, if I exercise, my blood sugar bumps up about 10 points (maybe from low 50s up to 60 mg/dl) and I feel so much better. My endocrinologist says this is stress response that's telling my body to break down glycogen, so it appears I do have the means to recover, it's just my body isn't doing it on its own. (P.S. Not recommending anyone to exercise when their blood sugar is low, please, please don't do this. I stumbled upon this by coincidence and it's unique to my situation, I think.) That said, sometimes this doesn't work.
Part of me wonders if my body has learned to hold on to my glycogen or something, due to how malnourished I was for so long (maybe it thinks it won't get anymore?). I'm not certain, and I assume there's no way to test for that.
Unfortunately this is going on so long now that I no longer get physical cues when I'm low (hands no longer shake, and no racing heart). It's purely cognitive issues (i just feel stupid and get really clumsy) or feeling like i'm gonna pass out. I just have to be diligent about eating every 4 hours. I bought a medical alert bracelet recently though I hope it's never necessary. It's difficult to leave my home for extended periods of time because of this.
Very interesting, thanks for sharing that. Yeah, sounds like a very puzzling situation. I wouldn't lose out hope on things improving with gaining weight, hopefully that will provide some benefits.
There's a product that could potentially be helpful - https://ucan.co/livsteady/
I'd of course discuss it with your doctors, but it's a long-acting starch compound that was originally developed for some individuals with genetic diseases. I wonder if something like this could be helpful. It may be cost prohibitive to use regularly, but hopefully this may be of some interest. Best of luck.
Thanks a lot, and sorry my response was so long. I hope maybe it will be useful for someone who stumbles on it. I rarely find discussions of people dealing with non-diabetic hypoglycemia. Thanks for the encouraging words about weight gain.
Wow, livesteady looks interesting, and yes, my endocrinologist and PCP both want me to have as much carbs as possible to replenish glycogen stores, so this would be useful. One interesting thing I'd seen recommended was cornstarch; apparently it's recommended for young kids that deal with ketotic hypoglycemia, before they go to sleep at night, as it's an easy source of complex carbs. Unfortunately, it has a pretty high glycemic index. I am starting to notice I can really feel higher GI foods (the relative drop is unpleasant, even before it gets low), so finding a low GI source of complex carbs is very useful. It does look cost prohibitive, but it makes me wonder if there's other good sources of low-GI complex carbs that are easy to get down (so a lot can be taken in at once). I see a dietician, and I will ask her this on my next visit.
I'm assuming you've been worked up for / evaluated for significant liver disease? Sometimes this can impact / lead to issues with hypoglycemia, though typically in extreme situations so it's not typically subtle.
Yeah agreed, the product I linked may not be the best answer but will hopefully lead you and your medical team to finding the best long-term solution for you. I'm assuming you have a continuous glucose monitor? You could potentially trial some various strategies / starch products and see what helps stabilize your levels the most.
The livesteady might be expensive, but if anything it has really got me wanting to look back into nutrition that can help manage this, so I greatly appreciate that you suggested it. I love that it is plant based, too. It just looks incredibly useful for multiple reasons.
I have never been worked up for liver issues (at least I don't think I have). Interesting, I didn't realize liver issues could interfere with blood sugar. I will ask my endocrinologist about this. Is it because the issues prevent the liver from storing glycogen properly or something of that nature? (Pure curiosity - I find this stuff very interesting tbh.)
Sadly insurance won't approve a CGM without a diagnosis of diabetes (at least this is what I was told when I asked if one could be prescribed.) I should probably ask again, but to my endocrinologist this time, because I bet if he requests it, maybe they would be willing to approve it as an exception. Yes, it would be so, so useful to have one so that I could see the impact of different foods, or get a better idea of when I'm getting too low so I can intervene.
Glad this has been somewhat helpful. I do think the key to managing your issues will be simply from preventing the degree of hypoglycemia from causing your symptoms in the first place will be key and nutrition would potentially be a big part of it (in addition to nailing down the etiology and treating any underlying conditions, of which it seems your providers think malnutrition is the primary driver).
I think the liver thing is unlikely, but it's primarily from impaired gluconeogenesis from significant liver dysfunction. Significant kidney dysfunction can impair gluconeogenesis as well, but this would be ruled out with a normal creatinine on your basic metabolic panel. Again, the degree of dysfunction would have to be pretty severe, so I think it's unlikely you or your team would be unaware of this (it would not be subtle), but could be worth bringing up.
I would strongly advocate to your endocrinologist, and have them also advocate on your behalf, for a CGM. This would be an invaluable tool and think that recurrent symptomatic episodes of hypoglycemia would be a reasonable counter-argument to whatever insurance company is blocking approval. Again, if you're able to identify and address the hypoglycemia before you develop symptoms than this would be key in addressing the symptom fallout. Good luck!
I don't mean to post "noise" (i.e. a thank you with no interesting discussion to add), but do really want to thank you for all that. I agree about nutrition and just preventing this stuff in the first place, along with figuring out the underlying cause, and this has me wanting to re-explore what foods I'm eating.
Definitely going to revisit CGM with my endocrinologist at next appointment. I live alone and so it's a constant concern for me that I will pass out and no one will know. Since I don't get many physical symptoms of hypoglycemica anymore, unless I'm testing all day with the glucometer, it can be difficult to know. One time I was feeling fine, then suddenly felt incredibly spaced out, tested, and found I was at 47 md/gl. It was scary. i would hope whatever insurance claims person sees the situation would understand. I will make sure to reiterate all this to the doctor (As I know he was worried about me living alone as well.) Hopefully this discussion will be useful for anyone else that might stumble on it that's in the same situation, to advocate for themselves, too.
Thank you again, and I wish you good luck too
I'm sorry to hear about your difficulties with blood sugar management - that sounds devastating. I can imagine that it's a source of constant anxiety to have to manage your diet so intensively.
What I'm about to propose isn't about managing hypoglycemia, but more root cause analysis.
You mentioned the hypoglycemia started after a period of of GI disease and weight loss, and that you have problems maintaining a healthy weight. Your endocrinologist ruled out insulinoma.
IANAD, but I've had to do some deep homework on autoimmune disorders because of my own illness. I'm wondering if you've had a thorough immunology workup. There's a rare condition where insulin receptor autoantibodies act as insulin agonists. Basically, the cells affected react as if you're having a continuous insulin overdose, and your blood sugar stays low or crashes. I'd have a high index of suspicion for this because it sounds like you have lingering central fatigue and brain fog even after replenishing sugars - brain tissue has more insulin receptors.
My rheumatologist once said, "Autoimmune diseases can travel in packs." People with Crohn's disease, other GI disorders, or severe infectious illness often wind up with additional autoimmune diseases. The theory is that damaged GI membranes permit exposure and sensitisation to dietary or gut flora proteins, peptides, and polysaccharides. These can resemble self-components enough to cause autoimmunity.
If it's the case that you've got an underlying autoimmune issue, there are effective treatments available. I'd hope to see you get your life back - it might be worth a trial of something like rituximab just to see if it helps.
Wow, interesting. Never heard of any of this! I remember my doctor once did a blood test for autoimmune disorders at the height of my GI/eating issues, and it came back negative, but I don't know the details of it, just that it was a single blood test. I will bring this up to my PCP for certain. Is it a rheumatologist to ask for?
I realize now I might have misspoken. I don't have lingering brain fog after treating, rather while I'm recovering from moderate hypoglycemia, I suddenly get hit with a massive bout of fatigue. (i.e. I am not tired while I'm low, usually just spaced out/brain fog/clumsy, it's just recovering from it that makes me very tired. The spaced out feeling goes away quickly after treating.) This has always been the case for me, at least for treating moderate (not mild) lows. My endocrinologist says it's normal for this to happen.
Yes, I would love to be free of blood sugar issues. I can still only eat very small portions of food or drink, and don't get hungry often, so it's difficult to keep up with eating enough to keep it normal. It is incredibly limiting and makes it difficult to leave home. My mom took me to an art museum last year and I was so excited, but I got hypoglycemia 5 minutes in and had no food with me, so I spent the whole time just walking around in a daze unable to comprehend much of anything. We finally had to leave early so I could find something to eat. It was really disappointing, and this is how much of my life goes.
It's been 9 years since my last episode (I was t2 diabetic), but usually these were emergencies for me so my anxiety and resultant energy was high after an episode. During the episode, I felt like crap, but I can't say that the feeling persisted after getting some quick juice/sugar/etc. to correct it.
As I read your comments, I (nobody who knows) reason/rationalize/theorize that your low is a low even while serum insulin is high which would make it hard to get your blood glucose up so corrective measures like fast glucose do not correct, they instead get absorbed by your adipocytes. For that to be true, perhaps your body is not insulin resistant but has normal or supernormal insulin response. I don't know what to do about that.
Wow, I'm sorry to hear you have dealt with that. Before my blood sugar issues, I didn't know much about diabetes, but during my research I have learned a little about it, and I have great compassion for folks dealing with diabetes. I honestly can not imagine having to worry not only about low blood sugar, but high blood sugar as well. Having to dose insulin right, all that stuff. I also didn't know about all the possible complications. My heart goes out to people suffering with any type of diabetes.
When my blood sugar drops, it is a slow drop. For example, it might be 60 mg/dl, then it takes another 30 minutes before it hits 55 mg/dl, and so on, though at some point it starts dropping faster. I imagine that for a diabetic person, since it's insulin dosing that's causing their blood sugar to drop, that the drop is sharp and quick. Was that the case for you when you were diabetic? Also interesting that after correcting it, you didn't feel any lingering fatigue.
My insulin levels are actually on the lower end when I have hypoglycemia, so taking fast measures (like drinking sprite or juice) actually works very quickly. I start feeling better almost immediately (within a couple minutes), and within 10 minutes or so I no longer feel spaced out. The fatigue that follows is only once it's corrected (as in, I am not fatigued when I have hypolgycemia, it's once I'm recovering from it that I get tired.) My endocrinologist says this is normal.
I am so happy to hear you no longer suffer with t2 diabetes, that's remarkable. What turned it around for you? Even though it's terrible to deal with health problems, I think the silver lining is it shows you how valuable health is and how we must do what we can to protect it. (At least that's what health problems have instilled in me. It was like a wake up call and now I value my health so much more than I did before.)
I was losing weight with calorie counting and doing walking for exercise. I was in Week 5 of a pretty moderate deficit (perhaps -750 off of metabolism) when I had that last hypoglycemic episode. I was driving and my mind turned to a fog and it felt like I had a fever. I pulled safely off the road and walked into a GNC vitamin store and I really was unable to choose anything (brain fog). Finally I picked something and it was enough to pull me up.
That's when I was able to stop insulin shots and all but one sugar-lowering pill that I was taking. Three weeks later, I was able to stop that too and my t2 diabetes was, at that point, controlled with diet and exercise. My HbA1C (diabetes tests) now show an absence of it -- I test the same as if I never had it. Still, I know I'm prone so I'm vigilant. My health is now my full-time hobby and lifestyle.
Damn, wonderful to read that. Do you still get h1c tests regularly to make sure everything remains controlled? It must feel amazing every time they come back normal.
I wonder sometimes if health episodes like this can be a small blessing in disguise. You were able to overcome this, and now like you said health is your hobby and lifestyle. Who knows how many health problems you might prevent in the future because of this. This is how I like to think of it. For myself as well, my health issues have sucked so much, but they've made me so much more aware and appreciative of my health (before all this, I didn't know much about nutrition, didn't care what I ate, was incredibly sedentary, didn't sleep well, didn't manage stress, etc. was just a terrible carer for my body.). Now I am mindful of every one of those things. I hope my suffering now ends up preventing some future (possibly worse) suffering i would have had otherwise.
I get the yearly HbA1C test, they've been 4.6 to 4.7 in recent years, "consistent with the absence of diabetes." (I love that phrase!)
I am passionate about this and my hobby has become helping others to find some of what I've found for themselves. I can't promise their body will do what mine did, but theirs might do better things important to them than mine did. It's all upside. And, by helping others, I find community for myself -- by teaching I learn -- by explaining, I sharpen my own understanding.
Good to meet you and keep at it! Thanks for sharing your health journey with me!