This is what 37 years of “okay” glucose control did for me. My Doctor performed an Electro-Nerve Test on my feet and the result was a resounding zero. I have absolutely no sensation in my feet at all. So it you think that A1c 7.0% and BG 180 mg/dL 2 hours post-prandial is fine and dandy, then think again.
I’m sorry Alan, that really sucks.
Bernstein and others believe that you can “heal” from neuropathy with a lowered A1c. And you have a lowered A1c. In fact, if I recall your A1c is “stellar.” There is every reason to believe that over time you can restore at least some of that feeling. I’m hoping that things get better for you.
I do feel sobered by your experience. Every time I hear this stuff from so called “medical professionals” and the ADA/CDA recommending that you don’t go any lower than an A1c of 7% I get angry.
Thanks for the reminder and sharing your story!!
I had a lot of years that I am not 100% sure what my A1C was as the staff @ Walgreen’s was able to get rx’s refillled w/o my having to bother going to the doctor very often. When I started back, i was pleased/ amazed that it was 5.5% or something whacky like that (I think the doctor was amazed too…) but I am always going to wonder how much damage is lurking in there. I also think that humans only come with a 30 year warranty though so, once I made it there, I am not sure anything would suprise me all that much?
Sorry about the neuropathy Alan – I know that feeling all too well. I have talked to other people in the past that had A1cs in the 6s and still ended up with complications. I agree that an A1c of 7 just doesn’t cut it.
Your timing of this post was pretty good. I participated in a webinar on neuropathy last night and was working on an article for my blog. I saw the information about the webinar here on TuD. I was skeptical going into it because it was presented by a pharmaceutical company – I feel the same way about them as I do “medical professionals!”
Sorry to hear about your neuropathy
I am quite frustrated as well. Not only is 7% ok for them but it seems like they are modifying that up to 7.5% based on flawed research. I know a guy who’s Endo told him to keep striving for A1c’s of 7.5% because “the evedince to go any lower just isn’t there”. Not sure who or where he is looking for his information? COME ON!
I’m at 30 years since diagnosis. I’m told by my doc that surface sensation in my feet is still just fine (e.g. tested with those pointy metal things or nylon fishline) but the bone conduction tests (e.g. tuning fork) turn up what my doc says is a lack of sensitivity.
Much of the time in the past 30 years I’ve been at A1C’s in the 5’s or 6’s. I’m not guarantee that whole time I was down there, I’ve had a couple of labs in the low 7’s, and early on there weren’t any A1C tests and in fact I didn’t even have home bg testing for a while at the beginning and to be honest I really doubt I was in the 5’s or 6’s if A1C’s had been measured.
These long-term complications are difficult for “official” medical studies to track. The DCCT ran for half a decade to a decade with intensive vs non-intensive groups and there are follow on studies that track the participants (now up to 20-some years out) and I think there’s a long-term retinopathy study program at U of Wisconsin and I think the U of Pittsburgh has a long-term overall longevity study.
But even without running a study out to 40 years, I can look at say the DCCT’s 5 or 10 year graphs and see that there is no obvious lower A1C bound below which complications do not occur. Even in the lowest A1C bins in their study there’s still elevated risks for each and every complications.
At the same time better bg control always results in lower risk for complications.
So we all have to try harder but there’s no obvious “safe number” to be below. When I’m pessimistic it seems like a race I’m bound to lose. But on the other hand the doc who originally diagnosed me told me that if I lived to be 35 I’d be lucky. And here I am well past that. So isn’t that some kind of victory? That we’re still around and trying to run the rat race?
You talk a lot about your recent numbers but my mental model for the complications is that they are cumulative so what happened back in the Stone Knives and Bearskin days would be relevant.
I’m not as much of an old-timer as you are but I know that when I started, nobody was doing home bg testing, we just had urine testing, and it wasn’t until the late 1980’s that my docs began telling me my A1C. How can you or I really know how much damage was done by high bg’s back in that time? I’m sure that before home bg testing my bg could be anywhere and I wouldn’t know until the Testape turned black or didn’t turn black. I’d hardly call that “control” by modern standards but AFAIK back then it was all I had. I would get an actual bg at most once a month (blood draw done at local hospital) and I wouldn’t know the number until either the doc called back the next week or if we missed the phone call, at an appointment months later.
What would be “merely OK” control the past couple of years, would’ve (as far as I’m concerned) been completely impossible to achieve 30 years ago. Well, maybe sometimes we got lucky and accidentally achieved it
So sorry to hear about the neuropathy Alan. Thank you for sharing your experience with all of us. Did it come on suddenly or did you have symptoms? Were you able to go for regular tests or did the doctor just suddenly decide to test you? I hope the others are right and you will experience healing. Thanks for the post.
I’m so sorry Alan. This is terrible. I was just reading an article the other day from my organization about how going to different doctors that specialize in diabetic foot issues can help prevent serious problems. Sounds like you can resonate with wanting second opinions.
Again, so sorry to hear about your neuropathy.
If anyone is interested in the story: http://bit.ly/l8uCxf
Great idea PP_DC: “Remove socks at every appointment.”
My gut feeling is that I’d put the blame on the years, decades and decades ago, when my level of control was basically unknowable, rather than on any recent bg or A1C standards.
I make that claim because I feel they keep “raising the bar”. Others might complain that they haven’t raised the bar high enough, but I myself will far more often gripe at how Dr. B tells me I’m supposed to have an A1C in the 4’s yet I’m not allowed have any hypos. It feels like I’m working as a bagger at the grocery store and an old lady tells me she wants all her groceries in one bag, but that bag can’t be heavy.
BTW, I used the visually-read chemstrips pretty much right up until the last day they sold them
Maybe I see a different bunch of doctors than you guys but… I’ve had foot sensation tests, either the “sparkies” (I think this might officially be called the “Two Point Discriminator”) or the “fishing line” or the “tuning fork”, at dang near every endo or internist visit for the past 30 years.
Different standards of care in different regions? I also tend to pick endos who are a little more hands-on rather than those that simply look at lab test results so maybe my experiences are not typical.
Type 2 - Ontario Canada - my endo has never looked at my feet. I have a foot doctor I can see once a year without payment and this is provided for all diabetics in Ontario. I am hearing that we will soon have to pay for these visits. Who knows how decisions are made? Country? Province? Type? Length of time since onset? Here, it is difficult to doctor shop as one must have a referral.
What I want to to know IS: If you have had type 1 for soo many years…mine 57 years…would you get neuropathy if you kept your numbers low? I think purely and simply - just because you have had Type 1 for so many years - you are going to suffer from neuropathy maybe not as SOON or as SEVERE but I believe you eventually succumb to it.
If you have neuropathy - NO you cannot get completely rid of it. You can improve the severity of it…but once the nerve endings are damaged, there is no repair. Personally, we had NO way to control our numbers way back when…in the 50’s, 60’s, 70’s so I feel I would have got the neuropathy whether my numbers were hi or low.
I got my A1c down to 6.5% once. NEVER again - I was having dangerously low, LOW’s all over the place. I could not function like that.
Thanks Peetie! I thought it was a really good tip. It will help both the doctor and I to remember.
I’m in same boat, @ .85U/ hour (generally…) basals, I get good results, w/ occasional drifting into the 60s and 70s. I had a brouhaha lately (see blog…) so they were “concerned” and they were fairly responsive, prying my MM password out of me so they can just d/l the data themselves. They (the nurse, although she referred to the doctor…) suggested turning basals down and I tried it and it didn’t work very well so I told them “fuhgeddaboudit”. I also expalined some of the “fudging” (bolusing for 25G and eating 17-20 for breakfast, etc…ok, I didn’t explain the overbolus @ dinner and drink beer until the BG falls into line around 9:00 plan…) I do and they offered a dietician. Uh nah, I am pretty sure I can guess what she’ll say?
i did feel sort of gassed about 21 miles into a 23 mile bike ride today though and lost about 10 sec off what had been a nice, constant average pace by the time I huffed and puffed home. It was new sensor day so I just had eggs and weightlifting for breakfast, no other carbs.
I have suffered with that for years. I have good A1C and good BG readings. I even volunteered for a Neurollogist for 9 years. I had so many of those tests it isn’t even funny. NEURONTIN does give me some relief. I could step on a nail and not know it. A rerrible affliction. I just live with him…no other recourse. I hope you can get some help I tried KYRICA but did not like the side effects. Some folks here try acid therapy do not know the name of it but my Doc says not for me. Good luck to you. Reed
…or wear Birkenstocks as it’s finally freaking summer here in Chicago! w00t!!
Test your spouse/kid/pup?