I just wanted to find out if anyone has experience before an autoimmune diabetes diagnosis with reactive lows/hypoglycemia. More specifically with protein causing lows. I’ve had reactive lows for years with carbs, and it’s gotten bad enough in the past 2-3 years that I’ve had to make some changes to my diet. I’m on a moderately low carb diet now but lately I’ve been running low constantly. I can’t get my blood sugar to come out of the 50’s and 60’s and I’ve been dragging so badly. Then I realize my diet is low carb but way too high in protein. For the past two years I’ve had to phase out protein bars from my diet because they just send me into a low bg fog and oftentimes I’ll be low enough for long enough that I’m horribly sick for the duration of it (nausea, headache, dizzy, all the good stuff).
My primary concern up to now has been that I’m heading towards type 2 because I was diagnosed with pcos almost 20 years ago. But my insulin reactions seem to be messed up to not only carbs but to protein as well. So I wanted to hear from others if they had this experience before autoimmune diabetes diagnosis. Any thoughts welcome!
@pink_chiffon, Welcome to TuDiabetes. Your post is a real point to ponder. Before I can think thru this and others join this quandary, a few questions the answers may help give you info.
Do you use a CGM (continuous glucose monitor)?
Do you use insulin? What types?
Have you thought/read about LADA?
What ever happens, please come back and share, it is how we all learn.
Hey Jay, thanks for your reply! I’ve actually been on these forums for maybe a year or two. I don’t post very often, because even though my blood sugar has been giving me problems for a while, I’m not getting any answers or help from doctors.
To answer your questions, I have been using a CGM for about a year and a half. I’ve reduced the carbs in my diet so it doesn’t spike as much as it used to but it still has a tendency to yo-yo whenever I eat carbs. However with some of the changes I made recently, I noticed too much protein has made me run low and no matter what I do I can’t bring my bg up. It’s been like walking through a fog. I’ve had this problem for a while with protein bars so I don’t know how I ended up with too much protein in my meals without noticing.
I’m not on insulin and I don’t have a diagnosis for this. I’ve been tested for some antibodies but the tests came back negative. I’ve talked to other members who said they had lows and reactive lows for years before a LADA diagnosis, but I haven’t heard anyone say anything about having these issues with protein. My initial thoughts about my blood sugar issues were early prediabetes, but now that protein is also causing me clear problems I’m a little more confused.
@pink_chiffon, you have me stumped for one and to see no one else has jumped on board is more of a conundrum. I have heard of another person with equally quizzical BG fluctuations. Their CGM has wild swings attributed to hormones, autoimmune inefficiencies or disorder, I am not sure which.
Hi Jay! Thanks so much for the article. I’ll check it out and see if I can glean any insights from it.
I’ll wait and see if anyone pitches in. I posted a question asking others about reactive hypoglycemia from carbs in another section of the forum over a year ago but it seems my experience is unusual. I’m kind of at my wits end getting answers, because doctors haven’t helped me and I can’t seem to find people who have similar issues. I’m at a bit of a loss.
Might be time to throw in the towel! I have thought about just eating whatever and ignoring my bg and maybe eventually it gets to a point where doctors actually give half a crap.
Hi! I am having similar issues and am scheduled to see an endo (November, which is far but they’re booked solid!). I have pancreatic insufficiency (I don’t make digestive enzymes lipase, protease, and amylase) and have severe lows that no one can figure out. I wear a Dexcom G6. Because of the Dex, I’ve been able to see that I also get highs, sometimes into the 300s. My last fasting blood sugar was 125, with another at 126. I also have rheumatoid arthritis, so autoimmune diseases aren’t out of the question for me. I didn’t think about protein dropping my blood sugar, but I’ve found it doesn’t help keep me as stable. I don’t really eat a lot of protein, as it’s hard for me to digest. I do protein shakes sometimes, but again, they don’t really keep my blood sugar as stable. I’ve wondered if I’m LADA but don’t want to self-diagnose. My Dex graphs can look completely normal and then the next day it’s a rollercoaster from the 40s to 200s. One day I can drink orange juice and be low for a while, the next a small pack of fruit snacks to treat a low has me at 250. It’s confusing and scary, honestly.
@Michelle2 Oh my gosh Michelle! First of all, I’m so sorry to hear you’re experiencing this! And thank you so much for responding. It sounds a lot like what I’m experiencing. Before I decreased my carbs to 120g or less a day, I would have days where my bg would go up to 184 but then within 30 minutes it would crash into the lower 60’s.
Like you, I also have such inconsistencies in how my bg reacts to things. Some days I can’t go anywhere near fruit juice because it will send me on a roller coaster. Other days my bg is so stubbornly low I can drink juice all day long and my bg will be completely unresponsive. I wonder if I should have my pancreatic function checked.
I also have autoimmune thyroiditis. Which is why I have also entertained the possibility of LADA. I’ve also had bg issues since I was 14 (or younger since that’s when I was first diagnosed) so it’s been going on for such a long time.
I was in Dexcom for about a year but I was paying out of pocket because insurance wouldn’t cover it. Now I have insurance that covers the Freestyle Libre, so I’m going to be getting the miaomiao 2 soon to make it a true cgm.
I’m on the same emotional roller coaster as you are. I will go into the 50’s on a regular basis at night and it is scary. I have no idea what’s going on or what to do about it. Everything I’ve tried hasn’t worked and doctors dismiss me. My quality of sleep really suffers, because every time my bg drops and adrenaline actually gets triggered (sometimes it doesn’t), it wakes me up. So I’ll get woken up 2, 3, 4, sometimes 5 times a night because of it. It has been so detrimental for my quality of life. It seems to be getting worse too.
I just wanted to post about my week and some weird things happening with my bg. As I said previously I have accidentally been having way too much protein in my diet for a few weeks and I have been running low day in and day out. This whole week I have just been feeling pukey (that’s the best way I can think to describe it). At first I thought it was a migraine and didn’t think it was related to my lows. But yesterday I was trying to find something to give my stomach relief but everything was making it worse. Food made it worse, water made it worse, soup made it worse, coffee made it worse, herbal tea made it worse. I decided to try some Italian soda even though I was worried what it would do to my bg. I started sipping on it and my stomach slowly started feeling better. I sipped on a bottle and a half of Italian soda by the afternoon, a total of 118g of carbs mostly in the form of sugar, and my bg remained mostly unchanged. It was up to the 70’s at that point. Normally that much sugar would send me spiking and crashing. But it seems like my high protein diet has had a huge impact on my daily bg values and to treat them I have had to do things I normally couldn’t do.
I’m still running low. I ran out of Italian soda but my stomach is bothering me, though less than it was.
