Low A1C, but I feel terrible

I was diagnosed with T1D in high school in 2009, and I went through a rebellious phase in college and had an A1C of 16% at one point.

I’ve been working really hard over the years and my most recent A1C (May) was 5.9%…

But I feel like trash ALL THE TIME! I currently do daily injections and wear a Freestyle Libre 14 day (I just got new insurance so I’m trying to switch to a more accurate CGM with an alert).

I think I’m highly sensitive to any change in my blood sugar. I’m aware of the negative impact having such a high A1C can have on the body, but it’s been years since then, and I’m worried I’m going to live the rest of my life feeling miserable.

I’ll have low symptoms, even when my BS is in range. Even as I type this out right now, I feel miserable even though my blood sugar is 111. Then when I’m high (210), I feel like every cell in my body is decaying (I know this sounds dramatic, but idk how else to explain it). I sometimes have a hard time doing something as simple as watching to because of how terrible I feel. I’m really struggling with having good numbers on paper and feeling terrible all the time.

I also lost my appetite. I was tested for gastropaesis, and the results came back negative. I feel nauseous most of the time and try to eat something small every 3 hours to level out my BS and stimulate my appetite (discussed with my endo).

Does anyone else experience this? Is anyone else highly sensitive to the slightest change in blood sugar? If so, how do you cope with it? Have you found any solutions to this?

So much of my day is spent feeling weak, drained, nauseous, and experiencing brain fog, that it’s really hard for me to have good days.

Apologies for the long post - thank you for reading! I don’t have any T1 diabetic friends, and I’m feeling really alone and frustrated. Clearly I’m leaving a lot out about my diabetes regimen, but I’m really curious if anyone struggles with not feeling well most days.

Hi @lesedi.ks - welcome to the forum and thank you for writing. If you don’t mind my asking, is there a range where you typically feel okay? Perhaps something a little higher would give you more quality of life.
As I recall, back when “tight control” was a relatively new concept and people were working to keep their numbers very close to 100 or even a bit under, some were hospitalized with lows, which of course have dangers of their own (we didn’t have the benefit of CIQ to help at the time and I’m not sure if CGMS were available (@Dennis , @Joe - any insights or memories?). I’ve also heard that some people strive to keep their numbers at a certain point and in time get used to what are initially uncomfortable feelings. I don’t know that I would encourage that, but if you want to keep your numbers around 110 maybe you could start at a slightly higher range where you feel good and gradually step back. That will be tricky since our numbers fall in a range rather than settling at an exact spot, but maybe you and your doctor can find a way that helps you gradually decrease. It may be - and I say this with caution - you’ll simply feel better overall if you allow yourself to have a slightly higher target range. The A1C is important but so is being able to thrive on a day to day basis.
Hopefully you’ll get lots of feedback here in the forum, but sometimes seeing a counselor one on one can help manage stress and anxiety. I encourage you to consider it. Wishing you all the best, and I hope you’ll let us know over time how you’re doing - and that you’ll share your words of wisdom too.

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Hi @wadawabbit thanks for the mention. Hello @lesedi.ks I am happy to hear that you are taking care, but it must be terrible to feel sick all the time. My only recommendation is to work with your Endo and make sure they know everything you are feeling, and maybe ask for a referral to a autoimmune specialist. Diabetes is an autoimmune disease and it sometimes comes with additional autoimmune problems such as allergies and celiac and other things that would need separate diagnoses. Hope you find that this forum can support diabetes issues and I hope you find help with your symptoms.

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Hi, @lesedi.ks, and welcome to TypeOneNation! I agree with Dorie and Joe (of course — they’re both awesome :sunglasses:), and I’m going to tag the equally awesome Paul-Gabriel @WearsHats, also, because he has shared before that he has experience managing with multiple, challenging diagnoses, which could be what’s happening for you, too.

We have celiac in the family in addition to T1D, and there’s no question that they feel awful when they’ve had gluten. Everyone’s very good about avoiding it, but cross-contamination is a real thing, so sometimes it happens anyway. (To be 100% safe you’d have to never eat anything you didn’t buy, prepare, and serve yourself, and that’s tough to pull off 100% of the time.)

Not saying you’ve got celiac, or anything else, for that matter, but it’s worth asking your doctors about other possible explanations for your symptoms. I know my first instinct as a parent of a kid with T1D is always to blame the diabetes, but sometimes, whatever’s going on is completely unrelated.

I don’t think you mentioned how fast you went from uncontrolled to the incredible 5.9 you’re at now. If it was fast, then it’s completely expected that you’d feel lousy. Our bodies get used to whatever we’ve been doing, so there’s an adjustment period before your body’s going to be comfortable with an in-range BG.

If it’s been years of relatively tight control now and you still feel awful, though, then I’m echoing Dorie’s questions about what BG feels comfortable to you. I know at least one person on this forum has posted that they keep themselves higher than 100 on purpose — I can’t recall exactly how much higher, but if I’ll let you know if I find the thread — because they feel lousy at 100, and they feel fine at 120 or at whatever it is that works for them, so that’s what they target. Definitely talk to your endo about that possibility to see if it’s something they’d recommend, but if so, you wouldn’t be the only one. (It’s also worth remembering that CGMs aren’t always accurate — the Dexcom is roughly 90% likely to be within 20 points of your real BG at any moment in time — so a CGM reading of 100 might really be an 80.)

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PS - the Freestyle Libre2 has alerts that will sound so long as you’re in range, even if you do not swipe. You do have to swipe to see what your reading is but it does let you know if you’re high or low according to the numbers you set. Dexcom has more features, primarily for pump users, although but even without a pump it allows you to share your numbers if you choose. I second @srozelle for huge kudos on your incredible A1C improvement. Well done!

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Found it! Tagging Janice @JaniceD, who posted this about a year ago, in case she has more thoughts for you:

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It’s hard to say what’s happening with so little information. It’s worth talking to your doctor about it.

But one thing that does sometimes happen is that your body adjusts to your habits. If you run high all the time, your body starts to think that’s normal. So when you come down to what should be a normal range, you feel like you’re running low. It takes a while for your body to adjust back.

It’s certainly possible, though, that you’ve got something else going on, and we’re not qualified to diagnose that even if we had more information. Feeling weak, fatigued, brain fog, and hypersensitive are familiar symptoms to me because they’re part of fibromyalgia. But those are very general symptoms that can be caused by a host of different things, and fibro involves more than that (like chronic pain, sensitivity to light and sound, ringing in the ears, etc). Sleep apnea can certainly cause chronic exhaustion and brain fog, and is associated with changes in weight. As was mentioned, a digestive disorder could also cause nausea, fatigue, and brain fog. The symptoms you describe are basically the body’s “check engine” light; you know something is wrong, but it’s so vague it could mean anything. Keep at it. Talk to your GP. See about consulting with some specialists to track down those symptoms and see what might be going on. Don’t be afraid to push a bit. Patients need to self-advocate.

It’s also just possible that you’re unusually sensitive to blood sugar. It hits everyone a little differently. As others have said, you can see what feels better and aim for that.

I’m sorry you’re feeling this way. I hope you can find good answers soon. The best scenario is the first one I mentioned: Your body was thrown out of whack by your blood sugars being so out of control for so long, and it just needs some time to readjust. If you keep your sugars under good control, that should be reversible, but it’s a gradual thing.

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Thank you so much! I definitely feel more “ok” in the 120 - 140 range. I have an endo appointment coming up and will talk to them about having a slightly higher target range. After reading all of the replies to my post, I have a lot to discuss with my doctor :(. I have a feeling that lowering my A1C as quickly as I did may have led to neuropathy. Thank you so much for your insight!

I’m glad to have been of help, and hope things go well at your visit. Again huge kudos to you for improving your numbers - even if it may have been too much too fast, it’s a great accomplishment. I hope you’ll keep us posted as things move along. Take care!

Hi Joe! Thank you so much for the reply :). I have an endo appointment coming up and will definitely ask about additional autoimmune problems. I do have hyperthyroidism, but it is currently well managed. I tested for celiacs and gastroparesis, and those tests came back negative. I’ll dig a little deeper and see if there could be other autoimmune dysfunctions I’m experiencing.

After reading all of the replies to my post, I definitely have a lot to discuss with my doctor. I’m also going to ask about potential neuropathy. I have a feeling that lowering my A1C as quickly as I did may have led to what I’m experiencing now. Thank you so much for your insight!

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Hi! Thank you so much for the response. I’ve been tested for celiacs and gastroparesis - both labs came back negative. I would have to go back and look at my records to see EXACLY how quickly I lowered my AIC, but I will say it happened pretty fast. I’ve been in the 6.4% - 5.9% range for roughly a year now and still feel lousy, which is why I’m concerned/confused.

Thank you for linking the post - I’m going to talk to my endo about raising my target level. I find I feel better if my blood sugar is in the 120 - 140 range.

Thank you for all your insight!

Hi! Thank you for your response :). I tried to fit as much info as possible without writing 100-pages worth of stuff :sweat_smile:. My body became used to the high numbers, so when I started lowering my A1C I knew that I would have to adjust. I’ve been in the 6.4% - 5.9% range for a little over a year, and I still feel like crap.

I’ve been tested for gastroparesis and celiacs (both came back negative), but now I’m thinking I need to talk to my doctor about possible neuropathy. I didn’t think it could apply to me since I brought my A1C down. After doing more research over the weekend, I realized I experience some of the symptoms.

Although I don’t think fibromyalgia and sleep apnea apply to me, I will definitely bring it up to my endo. It never hurts to ask!

Thank you so much!

Here’s hoping you’re just a 120-140 person, but definitely post back with what the doctor says! :crossed_fingers:

Hi,
I see you got many helpful answers to your post, but I will add one more. Dealing with this for more than 50 years, I will tell you I NEVER got used to low BS’s. I am most comfortable between 100 and 120 . ( I would give give anything if I could always keep it there). But not only is the BS a cause for the way you feel, but also how fast you are rising or falling. If I am at 105 and slowly fall to 90, I may feel great… but if I’m 160 and and crash to 90 quickly, I can feel awful. And there is no worse feeling in the world than low blood sugar. I am what they used to call “brittle” highs and lows, bouncing all over the
place. The most important thing is to keep you BS as level as possible within a reasonable range.

And the absolute worse is the yo-yo affect: if i crash to 50 (usually no known reason), i will definitely bounce to 300 8-10 hours later. And then we start this process all over again…
keeping my Bs level - even higher than recommended in general - gives me better enjoy of life.

Have you tried changing your diet slightly to a less carb diet? Less carbs (more protein) can help with the highs and lows and less insulin is always better. Something to talk to you doctor about.

I hope this forum has helped you. Though I don’t check in often, I think it’s such a great resource - for everyone with diabetes.

Hi,

I read with interest about your hand pain. I am 61 years old, 51 years T1D, and a few years ago my hands starting being numb in the early morning hours, waking me. This ONLY happens with my BSs was low. Later, it happened when my BS is low/normal. 60-110 BS. Not always, and sometimes slight and sometimes extremely painful. Never any other time of day. Never in my feet. Never when my BS is high normal/high. My doctor never heard of this. When I asked on the forum , only a few people mentioned hand numbness, but no one really associated it with low BS. Can you tell me more about what you are experiencing?

Terri

Hi @Terri. I’m known for sharing out of the box thoughts (not just on diabetes:)) and this one came to mind about the numbness that woke you up: I occasionally wake up with numbness in my hand, and find that I was lying on it. I tend to move around in my sleep and apparently placing my hand under my body is comfortable at some point. I wake up sometime later and… If you’re a hard sleeper you may not notice it when your numbers are normal/low normal; and if it takes a while for you to wake up from a low, and you were lying on your hand at the time, you could have two unrelated issues going that seem to be connected.
I may be totally off the mark but just thought I would mention it. Best to you in finding the definite cause.

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