So, I’ll definitely be going to the doctor(s) in the coming week now that I’m back in town after Spring travel season, but I’ve got some strange things going on. Specifically, I’m experiencing what I’m absolutely positive is peripheral neuropathy in one of my feet. I had mild neuropathy in one foot before diagnosis, and it reduced in severity and then went away within a month or so of normalizing my blood sugar.
But, a few years later, and with normal to high-normal BG and A1cs, it’s back! My last four A1cs have been 4.6%, 4.8%, 4.8%, and 5.2% (most recent), and I haven’t had a postprandial BG over 140 mg/dL by glucometer in almost a year. My fasting BGs have been steadily creeping higher over the last year or so, from mid 80s to 105-115 mg/dL in the last few months, but it doesn’t seem high enough to start causing neuropathy.
So, not looking for a diagnosis or anything (clearly); mostly just ranting (since it’s caught me off-guard). Anyone else been surprised by complications while maintaining relatively low or normal BGs? And is there anything to do about neuropathy other than regularly checking for wounds (I definitely have the numbness variety) and trying to lower eBG? I suppose I’ll start hitting the ultra-low carb thing to try to get back into the 80s again ;/
Not as surprised as irritated by PN that began when I was recovering from neck surgery, way back in 1988-1989. I developed severe stinging all over my body, due to high bg’s that were excessive, even for my pre-pumping, pre-meter, pre-Humalog days. Ever since then, I get stinging when my bg’s get over about 160 or more, even for a short time. To prevent being miserable from the sensations, I take Lyrica 75 mg, 3X a day. As long as my bg’s remain good, I get no stinging, but if it rises too high, even the Lyrica won’t stop the PN sensations. And BTW, my A1c’s have been around 6.1 for a few years and recently in the high 5’s (pun intended).
I haven’t, really, and I’m not aware of what those factors are! I do take a very high dose of B3 (only way to keep the doctors off my back about cholesterol), but don’t take other B vitamins outside of a multivitamin. I also take Metformin, which I know can lead to B12 (?) deficiency, so maybe I should get that checked.
I think Bernstein has some online info on neuropathy and supplements.
I had symptoms after chemo-induced neuropathy, and used gabapentin and other supplements, which resolved my symptoms. No longer taking them and doing well.
When I was diagnosed back in ‘84, the medical clinician thinking was that diabetes would progress, no matter the control. The DCCT effectively put that perspective to rest.
I think, however, that genes play their role regardless of BG control. We must realize that good BG control just lowers but does not eliminate the risk.
Sorry about your neuropathy, but I think good control helps in so many ways, it’s worth it. There’s only so much under your control, so exerting BG control confirms to you that you’re doing the best you can. Good luck!
No doubt! It’s been a strange, surprising, and disappointing week on the diabetes front for me… Doing the best I can turns out to be pretty good, but not good enough to stave off the complications (minor, at this stage) that I was terrified of on diagnosis. Given my family history (full of diabetics with complications while otherwise healthy), it’s not too much of a surprise. I have to admit, I was thinking I’d skip this year’s eye exam haha
“With my A1c under control, why spend the money on an eye exam when I couldn’t possibly have bleeds?” Need to call the office and schedule a visit.
People who don’t even have diabetes frequently develop issues that if they did have diabetes would be attributed to it. Diabetes just increases risk profiles of a number of issues. Tightly controlling diabetes or even not having diabetes at all does not insure that nobody would ever have any of the same issues that an out-of-control diabetic would be far more likely to have…
As a side note, I’ve been positive I’ve had just about every complication imaginable but none have ever amounted to anything…
I have had many complications, with 53 years T1D, and fortunately the treatments are improving all the time. Hasn’t stopped me from living a great life.
I do the best I can, and deal with what comes my way, including cancer. We are tougher than we think.
There are many other causes of neuropathy - or nerve pinches leading to tingling type symptoms - than just high bg’s. Do not let your doc just attribute your symptoms to peripheral neuropathy without looking for other (possible joint or nerve pinching) causes. Get your doc to check you, or to refer you to orthopedist, who can evaluate your particular situation.
Celiacs can be deficient in vitamins, like B-12, that can cause tingling. Even high serological levels of Vitamin B-12 may still mask a deficiency. I had off the chart levels, and tingling. I ceased all supplements and ate a diet rich in nutrients and of course, gluten free (because I have celiac disease). My blood tests normalized and my tingling did resolve for a while. Unfortunately, it has come back. Although healed from celiac disease (biopsy confirmed), I have autoimmune gastritis which impacts my B-12 absorption.
If you are a TD1, consider other autoimmune issues as not everything is related to diabetes.
I have had HbA1c values in the four-range for the last decade, but my complications have been progressing faster than ever during this period, with four retinal photocoagulation sessions to treat worsening retinopathy during this time. The sad fact is that diabetic complications are produced not just by hyperglycemia, but also by genetics and inflammation, so even with perfect blood sugar control, the complications may continue to get worse.
Also, there is something known as ‘hyperglycemic memory,’ which refers to the phenomenon that diabetic complications can spontaneously grow worse even during periods of good blood glucose control as a result of the damage to DNA from hyperglycemia many long years before. For patients like me, who were diagnosed with type 1 diabetes long before modern methods of strict glucose control were possible, since we only had highly imprecise urine sugar tests, the hyperglycemic memory had a good 20 years to build up its damage, which now bears interest forever, whatever we do. So what is the point of strict control now?
Well you had me right up til this last sentence. I suppose the purpose of strict control now is to produce further compounding damage even further down the road. Seems like a no-brainer unless one has no interest in living more than a few additional years. I was diagnosed with stupid high blood sugar levels… should I just throw up my hands and say “to hell with it the damage is already done” or should I try to minimize the number of years of my life that are spent our of control, causing damage not only now but maybe 10-20-30 years in the future…
How did your doctor determine that you have this? I’ve had some problems with vitamin deficiencies or insufficiencies in the last few years. Were there any obvious symptoms for you?
It’s kind of like saying, “Well, I got hit by a car and have some permanent damage…what’s the point of even looking before I cross the street or wearing a seatbelt anymore?”
I aim for tight control for the day-to-day benefits (less stress and life interruptions when not on a constant rollercoaster) as well as possible benefits 20-50+ years down the road.
My point with that last remark is that since the automatic damage being done by the genetic imprint of poor glucose control during the 20 years I had type 1 diabetes before home glucometers were invented is so massive, it swamps the impact of anything I can do now. As I mentioned, my A1c, which is measured every three months, has never once strayed out of the four range during the last ten years, yet the worsening of my retinopathy has been massive during that time, and I have had to have more laser photocoagulation treatments during that period than in the 42 years of diabetes before then. Even during my 20 years prior to home glucometers, when most patients were running an A1c in the ten range, I only needed a single laser photocoagulation treatment.
Another important factor to consider is that my life expectancy, which is already about 11 years less than normal because of type 1 diabetes, is now short, so the time available for further accumulation of hyperglycemic damage will be brief. Also, compared to the overwhelming force of hyperglycemic memory, any control I achieve now will be at most a drop in the bucket, and for that drop in the bucket I pay an enormous price in terms of hypoglycemic episodes, which at my age mean broken bones.
So I’m curious…why do you keep such a low A1c if you don’t believe tight control will benefit you, if it seems to (based on your comments) so negatively impact your quality of life, and especially if you’re experiencing such severe hypoglycemia?
Not everyone has to aim for super tight control, and that’s especially true of older people and people who experience severe hypoglycemia.
Also, standard deviation is just as important as A1c. If you have a low A1c but a high standard deviation, then that’s not good. Most of us here aim for low standard deviation as well as low(er) A1c levels (not many Type 1s, even on this site, have an A1c in the 4s).
There has been controversy about whether unstable blood sugar levels are themselves harmful, but since blood sugar varies spontaneously according to factors that patients cannot measure, such as stress, hormones, and other physiological shifts, there is blood no way that insulin dosing can always perfectly match blood glucose shifts. Friends of mine and I have even noticed that nightmares can cause morning hyperglycemia, so how would it even theoretically be possible to anticipate those and the degree of hyperglycemia they will cause, or how much extra insulin to take in case we have them, which of course we cannot know? Without the countless insulin microdosing in response to blood sugar shifts from beta cells, blood sugar can never be constant.
There’s uncertainty about whether or not unstable blood sugars contribute to long-term complications. But putting that aside, on a day-to-day basis, unstable blood sugars are not good.
Of course we can’t control everything and I doubt anyone here would say that they have a master hold on their blood sugar at all times, although granted many on this site do have extremely tight control. (I, for one, also have massive changes in insulin sensitivity from hormones, weather, illness, activity, and many other things. I am slowly learning how to anticipate nad respond to as many as I can, and am trying to minimize the blood sugar impact of the factors I do have control over, such as diet.) But if you are aiming for super tight control with an A1c in the 4s and experiencing severe lows on a regular basis, then that to me does not sound like good control.
I’ve woken from strange dreams and have found that my blood sugars are high. I’ve always attributed the dreams to the hyperglycemia but I guess the a causal arrow in the other direction is just as likely.
