Foot Neuropathy?

I’ve had itching, crawling, picky sensations in my feet for a few years. Before I knew I had BG issues I didn’t think much of it because it wasn’t constant. Now I have an area that went from being numb on and off (felt like I’d stepped on a piece of tape) to always numb and slightly painful when walking barefoot, especially on hard floors. This is really, really upsetting me. I guess because I can’t do the denial thing anymore about the effect roller coaster blood sugar excursions are having on my body. I’m not on insulin (A1c and fastings are good, just post-prandial highs often over 200 and then reactive hypo lows) and not taking orals anymore because of side effects. Just feeling discouraged today and worried it will get worse.

Hi Lilli,

Sorry about your neuropathy symptoms. I have symptoms too with bg changes, but I had symptoms for years from nerve damage from an accident too. I think you need to be on some medication whether orals or insulin if you're getting 200's and up and lows. Have you tried controlling with a low carb diet alone? Some people do that and seem to have success at least with keeping the numbers in normal range. I'm not sure if you want to do that or not. Maybe there are other oral meds you can explore besides metformin? I think that is the best one though.

I’ve been doing some low carb, especially at dinner time so I can sleep and not go to the bathroom all night. I need to gain weight so it’s hard to balance low carb and maintain my weight, you can only eat so much fat. I didn’t try metformin, my endo had me try januvia and prandin. He didn’t think metformin would be a good fit but I actually have some that a PCP gave me. Haven’t tried it though but I’ve been thinking about it. Does it help with post meal numbers even if you aren’t insulin resistant?

You say you're T1 (presumably LADA) in your profile. If that is true, I can't imagine why you're not taking insulin. Are you sure about your diagnosis? Isn't your doctor pushing you to take medication?

Current endo says he thinks it’s early autoimmune diabetes. No insulin yet because my A1c and fasting are ok and I’m auto antibody negative, my problem is very little 1st phase release when I eat which was measured during an OGTT. Endo before this one suggested I go to UofM or Mayo because I am not typical T1 or T2 and he admitted he didn’t know how to treat me. I think I should be on insulin, I’m sure I wouldn’t need much based on my sensitivity to repeglinide but he won’t go there yet despite symptoms and hyperglycemia. I’m thinking about trying the metformin even though he doesn’t think I should, maybe I’m a thin T2? Don’t know what to do. It’s all very frustrating and very tiring.

I was first diagnosed as a Type 2, when all along I was T1D. After I got out of the hospital, near death when I went in, I had neuropathy with shooting pains that kept me awake.

I exercised on a stationary bike, and the numbness, pain, and tingling went away.

A neurologist told me diabetics face 2 kinds of neuropathy/foot problems: circulatory problems and nerve damage. I could and can alleviate circulatory issues with exercise, nerve damage I can't. I would try and get a second opinion about what you have.

Insulin is a serious medicine and needs to be used with care, but it sounds like you should be using it, if only a couple units when you eat meals. Since you make enough insulin to cover basal and most of your bolus needs it shouldn't be difficult. And if you eventually end up as a full-blown T1 (hopefully years down the road if at all), you'll have useful experience managing it.

I can't imagine a doctor preventing you from having insulin if you push hard for it, especially with BG over 200 and hints of a complication like neuropathy. Your foot may well be something else (and hopefully is - pinched nerve or something?), so worth investigating further with a doctor, but it may be useful to get you started on insulin, if that is your goal.

You should friend request and email Melitta, since she has a lot of info about LADA and mis-diagnosis as T2. She can certainly help.

For some reason I thought you were on metformin already. It works on the liver to slow glucose production, helps muscles absorb glucose, and decreases insulin needs. I think it can help with post meal numbers and overall bg levels. I only took it once when I was in dka, so I don't have a lot of experience with it. But if you're type 1 early phase I agree that fast acting insulin for meals would probably be best for you. I hope you get your diagnosis figured out soon. It sounds very frustrating. The weight loss suggests type 1.

I eat a lot of healthy fats and they help with my hungry feeling etc. I always ate them in the past.

Unfortunately the way that diabetes is diagnosed these days is very imprecise. If you were antibody negative you likely won't get a near term diagnosis of T1 unless you are shown to not be producing insulin. Your doctor has probably at this time ruled out T1. Which means that all they know is that you have diabetes. They don't know what kind and they don't know what the right treatment should be. I have to tell you, many diabetics (both T1 and T2) find that as their insulin production falls they lose their phase I insulin response and that they go high after meals and then sometimes overreact with lows as their phase II insulin response kicks in at max. Heck, you may actually have a type of diabetes called MODY which presents as after meal highs.

While you may feel like the sensations in your feet have increased, it may actually be a sign that you are healing, getting feeling back and that is why you feel it more. It is certainly appropriate to visit a podiatrist and/or a neurologist who can give you clear diagnosis of whether you have neuropathy and monitor it's progress.

And I'd also like to note that you have been placed on prandin which is known to be a class of drugs that can cause hypos and not be durable. The sulfonylureas and drugs like prandin are no longer considered good first line drugs. Perhaps you could talk with your doctor about the GPP-4 or DPP-1 medications, they have been shown to work well for dealing with meals and studies seem to show they are much more durable than sulfonylureas and prandin.

My c-peptide is at the bottom of the normal scale, insulin always at the bottom too whether fasting, random, and as I mentioned above, during the OGTT. So he knows there is not enough insulin. But yes Brian, being auto antibody negative has left me in diagnosis limbo. I think if I had one of the antibodies he may have had me try a small amount of bolus insulin by now. I do however have one of the more common genes predisposing me to T1, family history of T1, history of other autoimmune disease myself, hence his belief it is autoimmune diabetes. I’ve asked about MODY but he won’t test for it, he is a LADA specialist and that’s what he thinks it is. The prandin did increase my insulin release with meals but did cause occasional very rapid lows which is a problem because I’m hypo unaware. It also upset my digestive system. Thanks for the comments everyone. I don’t know what to do or who to see for another opinion, most docs want the obvious diagnosis, it’s easier and perhaps less liability concerns if insulin is introduced into the equation? Truthfully, I was just doing nothing but then this neuropathy thing got worse and became a constant reminder I have a problem that is causing damage to my body and I don’t have a solution to stop it, at least right now. Not a good place to be.

Hi Lilli,
I'm sorry about the Neuropathy. My mother has severe neuropathy in her legs and feet so she started with a cane in her late 60's and then a walker at age 72. I sent you a message with link to an article that talks about autoimmune diabetes.

My foot neuropathy began two years ago. At the time, my Fasting Glucose and A1C were normal. Now, I'm pre-diabetic. In the last two years, however, the neuropathy has not worsened. My toes are a bit numb, I get the random pain, but I've found if I take good care of my feet it seems to be okay. I would not be worried unless you start to notice a change (as in it's getting worse). I don't know if that helps but I do understand your frustration and discouragment.

I spent a year going to my doctor about sharp stabbing pains in my feet, almost constantly. He couldn't figure it out. I saw a few other docs and had X-rays and ultrasounds too. Nobody had any clue. All I knew is I hurt - a lot. Finally I got mad and went to my doc and pounded on his desk and said we need to find out what's wrong! I didn't have arthritis or flat arches or any obvious thing wrong. He just had no idea what to do so he said - let's get a blood test done for diabetes. I doubt you have it because you are too young (40 or 41) so I said ok. Well, don't I have t2 diabetes! He was as shocked as I was.

My feet don't hurt now, they are rather stiff in and around my toes but the sharp pain is long gone. I assume it's neuropathy and I do take care of my feet and look at them often to make sure all is well.


Thx Kristen, it did get worse which was what was scaring me. My doctor said maybe a trial of Invokana but I’m thinking I will just try to cut out more carbs, even though I’m trying to gain weight back.

Gotchya. I hope whatever you do helps to alleviate your symptoms and stress.