Freaking out a bit about Neuropathy...I'm 25 years old

Hey guys, I have had type 1 since I was 10 and just had my 25th birthday. My doctors have always said my A1c's were great (I'd say 90% of the time under 7) but several things like work, being a kid, and being uninformed made my blood sugar spike often. I never had a problem with too many lows, so maybe the spikes weren't as often as I assume (thereby giving me a deceptively good average), I am just paranoid so know that off the bat.

ANYWAY, recently, currently, between two Endo appointments I am experiencing what I think are the early signs of neuropathy. I am experiencing, at random but frequent points of the day:

-vibrating at ends of random toes (not at same time on both feet)
-burning at bottom of feet
-and, awhile back, a quick burn on bottom of both feet when I'd get out of bed in the morning that subsided in seconds
-the rarest is a slight numbness with burning, but this almost never happens

I also notice the tingling and stuff is most prominent when my sugar is high.

My endo appointment is soon, and of course I will have him test me or send me to a neurologist. I have immediately upon feeling these symptoms kept my blood sugar from 70-140 as freaking often as I can because I have heard I might be able to reverse or permanently stall this damage with these numbers around a 6.0 a1c BUT I am having trouble not spiking my sugar once a day (low 200's for 2 hours then I get it down fast, some days it spikes not at all, some days twice but I try as hard as I can to not let it last long at all)

Cliff's notes version, and the question I want answered guys!: If I keep my sugar between 70-140 like 90% of every day of my life (I am striving for all the time) can I live with MILD sensations for decades, or is neuropathy probably going to get worse? Can I get married and live with this complication for years, or are my legs going to be numb as hell very soon?

You can reverse neuropathy and other high bg symptoms with very tight control. Have you read Dr Bernstein's book 'Diabetes Solution'? If not, you should, its a great resource. How tight of control needed for reversal is debatable. Dr Bernstein strives for perfect control(bgs < 100 at all times) which would pretty much guarantee total reversal, but im sure if you stayed below 140 90% of the time your symptoms would at least not progress further than they are now.
Do you follow a low carb diet? Going low carb and eliminating processed foods, sugars, and grains would greatly reduce the bg spikes.

Thanks for the reply Shawn! Man, under 100 at all times is amazingly difficult. How the heck could I ever pull that off, I would go low incredibly fast walking around at work, cashiering at work, or hell even sitting around! People who can pull that off must have sedentary lifestyles. I should mention I am not on the pump or continuous glucose monitor. Just Lantus and Humalog.

I try to eat whole grain, not many sugars, and processed foods well I stay away except protein bars because I am a gym rat lol.

The only time I really have difficulty controling my blood sugar is when I'm working because I am a bit nervous I will go low then

Thanks for the reply Shawn! Man, under 100 at all times is amazingly difficult.

Sorry, I would never do that. Too dangerous for some of us.

I know that the minor Neuropathy in my foot was due to a year of higher blood sugars
around 14 years ago after having Diabetes for about 37 years. I got my sugars in better control which resulted in the feeling returning to my toe and sole plus no more stabbing pain, after quite some time. Back then I was on Toronto and Lente Insulins. Now I am on Humalog and Levemir. A pump could be more useful for you, if you could get the funding.

Although the cause of Neuropathy being due to Diabetes cannot be ruled out for you,
there are unfortunately many other reasons for having Neuropathy. Do have a strategic chat with your Endo to better your numbers and perhaps other tests that may apply. Hopefully these links are helpful to you.

At about your age I went to see the doc because of tingling in fingers that I had convinced myself was neuropathy.

Doc was confused by this because like you I was in excellent control and was young.

Turns out that the tingling and numbness was from a watch band that was too tight. Took an orthopedist about 30 seconds to make that determination after he poked my hand a few times.

Obviously I cannot rule our neuropathy but it seems very likely given your young age and history of excellent control, that something simple and not-diabetes related may be causing your symptoms. Bet an orthopedist could identify it better than an endo :wink:

Weird thing is, I have no other complications and my control was about the same for the past year as usual. Certainly no big difference in anything.

I DO have very flat feet and wide feet and used to wear orthotics (that I haven't worn in 15 years) , and started to notice this pain around the same time I got a new pair of running shoes that were noticibly tighter fitting than my previous pair of shoes. I also have a weird callous in the middle of the sole of each foot, but I doubt this would cause vibrating in the toes

But I find it too coincidental that I would have bouts of burning in both feet today and yesterday, and not have it be diabetes related. I had never felt anything else like this in my life.

Though I should mention I rarely if ever have numbness

I've had several doctors say that virtually ALL potential complications are eliminated if your A1C is consistently 6.5% or less. So if you can get it down to that level and keep it there, you should be all set. Also, even years before I was diagnosed with T1D, the bottoms of my feet would occasionally be tingly or have a weird sensation...I attributed this to walking a lot in certain shoes, even certain socks, or walking barefoot on hot pavement, so your sensations might possibly not be T1-related at all.

I have had tingling and some partial numbness for years due to nerve damage from injuries and it does get worse when my sugar fluctuates. I'm not even sure if it's even actually neuropathy or how they will tell. I think keeping a1c at 6 or below should help a lot. Hopefully if it is not too bad it won't really affect your overall health that much... as long as your circulation is good it should be ok. There are many things that can cause tingling.

hmmmmm well I can remember staring off my diabetic life in that honeymoon period with a1c's all in the low to mid 6's....then a mix of 6's and 7's, the odd 8. Lately its been high 6's and just at 7.

My last one was 6.9...the difference between 6.9/7 and 6.5 isn't very much, which is why I find it odd I would experience these problems 15 years in

Maybe it's a straw that broke the camel's back situation?

What you describe sounds just like what I experienced early on and before I was diagnosed. By the time I was diagnosed I had full on PN and then some. The ONLY hope I was offered was to maintain my BG as normal as possible. So I worked my ■■■ off to do just that. It was not easy or quick, but I have found a diet and system of eating and dosing that works for me. Most days I am between 70 and 110. Not always by any means, but mostly. I treat anything over 140 with concern. I'm no gym rat, but I can mow the lawn and go for a 2-3 mile walk without any worry (as long as I know what I'm starting at). I eat about 100 carbs per day and have maintained a very consistent A1c of 5.5 for the last three years. It really is all about keeping the numbers as level as possible. It took about a year of this to begin to see real improvement and it continues to get better.

I am also on Lantus and Humalog / MDI. I determined early on to do everyhing I could to keep my insulin use at a minimum. I did find a product that helped greatly in preventing lows for me. That would be Extend Products. You can check them out online. I find the bars at Safeway, but they have a lot of other items too.

Also, here is a link with a lot of good info on neuropathy.

I have personally talked to several people who followed their doctor's direction and maintained a "good" A1c near 7 for a number of years only to describe the symptoms of PN and retinopathy they are now having like me. Normal is Normal, 7 is not. Just like everything else with this disease, each of us is different and must learn all we can to take proper care. It is up to me to make sure I am aware and doing all I can.

I see alot of people on here who say they have lived with this type of mild neuropathy for 2-4 decades without progression because they maintain better numbers than before.

I want to be in this camp! Is it more likely I will be or will I be in the camp who quickly deteriorates?

3 years or 30 years? Are most cases the 30 year camp with good control?

Went to my endo today guys. He was pretty damn certain it isn't neuropathy and more likely my soft/narrow shoes. He touched my foot and saw that I had feeling as well as saw that I have a ton of hair on my toes (lol).
My A1C was also 6.0!
He said that it would take years of poorer control than I have to develop it and was like "let me ease your mind, it isn't neuropathy"

He was confident it was the tendons in my foot getting stretched out and said to get harder shoes

My podiatrist told me that BG swings are just as damaging as high BGs. By keeping my A1c between 4.9 and 5.3% since mid 2009, I have eliminated PN foot pain entirely and recently started to be getting some feeling in my toes. I aim for a SD of 1.0(18) but as long as it's below 1.4(25), I'm happy.

However, the improvement in my eyes is much more spectacular. Retina damage has been almost entirely reversed and I have been able to get "requires correctives lenses" removed from my Drivers Permit.

The bad news is that my PN and eye damage occurred when my A1c was averaging 6.7% with a SD of about 31.

Alan, that is fantastic! Are you doing anything special to maintain those numbers?

Christoph–so glad to hear that for you!! :slight_smile:

Much the same as yourself. Really paying attention to the post-meal rise.

part of me doesn't trust my endo though. he is a great doctor who is also a type 1 himself. but still he was awfully flippant

but I guess I should, considering I told him pretty much exactly what I told you guys here

That seems to be the trick. Just being very aware of cause and effect.

I have had three surgical procedures and a fair amount of laser treatment for my retinas. Has your improvement been all due to control? My retinologist credits much to my control, but I do not believe I would have so much improvement without his work.

good for you guys!