Fewer Amputations=Good News

Amputation. Scared yet? It was probably one of the first words you heard when you were told you had diabetes.

Since day one in my life with Diabetes it has been drilled into my head to "check your feet daily." Never, ever go barefoot. Not once - and I haven't except for the bathtub since January 10, 1994. With the risk that we have for poor circulation and nerve damage we might not notice, coupled with an impaired ability to heal normally, it is good advice. Something as simple as a blister or a cut on a foot can lead to infection. All too often it leads to the amputation of a toe, foot or leg. In fact, diabetes has long been the #1 cause of lower extremity amputations.

I came across some good news from the Centers For Disease Control. Even though more people than ever are being diagnosed with diabetes, the risk of complications leading to amputation are down. Down a lot. A copy of the press release can be found at this link. More revealing is a chart that depicts how amputation rates for people with diabetes has declined markedly from 1988 to 2006.
During that period, amputations have declined from 7.3 per thousand diabetics to 3.5.

There are probably several causes for the decline. Among them are that people who are newly diagnosed dilute the ratio. Further, complications tend to worsen the longer a person has the disease and these new patients are often not at the point of experiencing severe complications. Better patient education certainly contributes to decreasing the rate as do advances in treatment. In any event, this is good news and we must all redouble our efforts at treatment compliance, conducting daily foot checks and educating others.

Thanks, Tom. I'd like to see stats corrected for length of time since diagnosis. I'll bet it's still gone down due to better patient education, medications, self-test equipment and interventions. I am old enough to remember having a diabetic friend who didn't have access to any kind of glucometer. She was early childhood onset and at the age of eighteen she was already going blind from retinopathy. Now that folks have pumps and pens, CGM's and glucometers, laser therapy for retinopathy, a better understanding of the importance of lowering carbs in the diet, more and better oral meds for Type 2's, "earlier" diagnosis for Type 2's, etc. I expect we'll see fewer and later serious complications across the board on a per 1000's basis -- even if there are more total diabetics.

I was diagnosed in 1971, the summer after I visited my great grandpa in the hospital who died from gangrene in both legs. He didn't live long enough to have amputations. I have never walked barefoot except in the bathroom or on the edge of a swimming pool to jump in. I am super vigilant about my feet. My diagnosis was before the days of meters or multiple daily injection insulin therapy and my blood sugar wasn't controlled well. I had thousands of laser zaps in both eyes for retinopathy by the mid 80's and deal with neuropathy and gastroparesis, but luckily so far, no kidney damage. I have been on insulin pump therapy for 17 1/2 years and I credit that in addition to obsession with my feet for preventing the need for amputation of my feet or legs.

Last August I was in a VA hospital for kidney stones. I shared a room with an older gentleman who was also a Type I. He'd had it for goodness knows how many years. He'd been living with a new kidney for 17 1/2 years, but that time he was in to have part of a gangrenous foot removed. Every time his doctor came by to change the dressing prior to surgery I got "treated" to a view (and awful smell) of what awaited if I didn't take care of my feet. It made an impression on me, to be sure. He was incredibly good spirited about it and helped keep my spirits up. We even joked about who was getting stronger, more "enjoyable" pain medications. In spite of his upbeat attitude about what he was facing, I resolved to do my best to not follow his example.

I also read a doctor's story commenting on the decreasing frequency of amputations. He said that twenty years ago as he walked into his waiting room full of people with diabetes inevitably one or more of his patients were missing a limb or had a white cane because of diabetes related blindness. He says that these days such a sight is rare. That is encouraging and I'm convinced that it is a result of better tools for patients and doctors to manage diabetes and education that helps patients to use those tools effectively.

When I first heard the recommendation of everything we diabetics would have to do to help keep our feet I was horrified that modern medicine should be so utterly and absolutely primitive as to have nothing better to recommend than checking your feet and not walking barefoot as their ‘solution’ to this problem. My horrified reaction came in 1966, and things are not much better today.

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I was recently diagnosed with “significantly advanced” mixed neuropathy in both legs, which came as quite the shock given my short period of having diabetes and the level of control I’ve had since very shortly after initial diagnosis (i.e., between 4.6%-5.2% a1c).

I had two questions:

  1. How did this happen? I thought Neuropathy (and lack of blood flow) happened from long term poor blood sugar?

  2. What do I do to make sure I don’t lose my legs, like my grandmother did towards the end of her life?

The neurologist, who I really quite liked, wasn’t able to answer either question to my satisfaction. To the first question, he answered “honestly, we don’t know why some people get neuropathy early and others only after years. It’s even possible it’s not directly related to your diabetes.”

To the second question, he said “keep doing what you’re doing. Keep your a1c as low as you can, avoid both high and low BGs, and don’t start drinking.” I didn’t even know drinking could be related, but so it is.

I would much rather have been given definitive answers: THIS is why you have neuropathy; THIS is how you can keep it from progressing. However, I genuinely believe that when it comes to these sorts of complications, there is more that we do NOT know than we do. I just have to keep doing the best I can, and hope I don’t end up like grandma.

Hi David,

Sorry to hear this. What measures/ diagnostic tools were used to come to this diagnosis?

The usual sorts of diagnostic tests (i.e., the really nasty and uncomfortable ones). My GP during an annual physical noticed that I wasn’t responding to the “poke tests” or the reflex tests (hammer) in the normal fashion, and so she asked me to see the neurologist.

Neurologist put me through a “nerve conduction study,” which involved two types of sadistic torture:

  1. started off easy with the “stun gun” test, where after slapping some electrodes on the skin of the legs, an arc-producing mechanism was used to shock my legs. I’m neither an electrician nor a neurologist, but my understanding is that this test times the muscle response to an electrical stimulus, and thus measures one type of nerve conduction.

  2. finished with the really brutal one: stuck needles into muscles in the legs and feet, and applied current directly to nerves to measure signal latency.

Results were pretty straightforward: I have significant damage to four of eight nerves in my legs and feet, completely parallel (i.e., both legs the same, so not a result of injury) and reduced blood-flow. Really presents (symptoms wise) as numbness and occasionally as pain (pins and needles, burning). The loss of sensation and blood-flow is the more serious issue.

Apparently, since I have a couple different (minor) autoimmune disorders in addition to T1, the neurologist thinks it could have been caused by any of several risk factors: heavy drinking in my youth; direct autoimmune attack on nerve sheaths; or elevated BG.

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Yikes… well it sounds like you had a thorough eval to say the least. I mentioned to my primary doc I’ve been having more tingling in my feet over time, he thinks it’s related to nerve compression in my back and not neuropathy since it gets flared up if I do physical work that involves bending over, Etc… makes me worry though. Guess I was wondering what a “real” eval like you had looks like. Hopefully your situation will stay stable for a long long time.

When I was first diagnosed with type 1 diabetes in 1966, Dr. Donna Younger was running a study at the Joslin’s Clinic of newly-diagnosed type 1 patients and neuropathy, which I participated in. We all had the usual electrode studies of our nerve function, and eventually received reports on our results. It turned out that we all had measurable slowing of nerve conduction velocities, despite our minimal number of lifetime hours with hyperglycemia. In my own case, I had only had two days of polyuria and polydipsia before winding up at the hospital and receiving insulin, so the hyperglycemia impact in my case must have been near zero.

Since there is now increasing evidence that diabetic neuropathy is at least in part caused by genes inherited along with those predisposing the patient to develop diabetes and in part by the autoimmunity which destroys the pancreatic beta cells also attacking the nerves, that is probably the reason why we all had slowing of nerve conduction velocities at that early stage.

It is interesting that the reaction of your neurologist to your presentation of neuropathy despite minimal exposure to hyperglycemia was to recommend more blood sugar control, when the evidence staring him in the face was that this was not effective in your case.

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Yes, like many things about diabetes, I’m starting to think development of neuropathy is an area where we collectively suffer from delusions that we know what we’re talking about (i.e., that it develops after years of hyperglycemia). It doesn’t seem epistemologically different to me than the canards about Type 2 being caused by lack of self-control or various dietary cures for diabetes. In other words, it’s an idea that gets out there and then somehow persists through misinformation and online repetition. It’s probably true for many other complications as well.

I think that your intuition is probably right in this case. There is some evidence, but this is a pretty understudied field. The same neurologist made it clear that we don’t really understand why peripheral neuropathy develops in most people. He said that, at least in the U.S., alcoholics and diabetics were most likely to suffer from neuropathy, but that there are plenty of cases where the presentation doesn’t seem linked to long-term alcohol abuse or elevated blood sugars. He also pointed out that about 10% of diabetics see their doctor because of neuropathy, and they are only diagnosed diabetic in the process of identifying a cause. So it can, literally, be the first symptom for some diabetics.

Well, it was actually a bit more nuanced than that, and I think his direction makes sense in the larger context. He actually gave me three distinct pieces of medical advice:

  1. Don’t start drinking. Apparently, alcohol consumption is known to affect nerve sheaths negatively. I don’t drink, so that’s alright then…
  2. Keep your blood sugars well controlled. It is very well understood at this point that persistent hyperglycemia does damage nerves.
  3. Take care of your feet. This is all the normal foot-care stuff, blah blah. We’ve all heard it ad nauseum.

In short, and he actually said this, “keep doing what you’re doing.” And I don’t think that is bad advice, even though you’re right that my neuropathy clearly wasn’t caused by years of hyperglycemia. Whatever caused my own case (and it really likely is that combination of genetics and autoimmune disorder), it’s pretty obvious that you want to minimize doing anything that would exacerbate the condition. If it is well-established that heavy drinking and uncontrolled BG damage the nerves, those are two things that I can avoid to the best of my ability.


And yes @Sam19, this has been a bummer. Probably my greatest fear about diabetes is losing my feet (because I saw my grandmother have this happen), and although there is clearly a great distance between a diagnosis of “mixed neuropathy” and “amputation,” it does weigh on the mind.

It has motivated me, however, to dust off my high-elevation gear and get back into alpine climbing and mountaineering. I’ve got a 3,000m climb scheduled for end of next month, and hopefully a 4,000m+ trip next summer. I figure I better get as much mileage as I can, while I can. And yes, I’m also hoping that with care and treatment things will be OK. The neurologist, however, was honest with me that at my age and level of nerve damage, that things weren’t going to get better. All about mitigating the damage at this point.

Two things I have done to deal with my neuropathy are: first, I have taken benfotiamine, a supplement thought in the 1990s possibly to prevent all diabetic complications, but since then that has been found not to be the case. Still, it completely shuts down flare ups of neuropathic pain whenever I have it, and for the most part it keeps it away, though when pains return I just increase the dose.

Second, every now and then I bathe my feet in warm water and apply warm liquid vitamin E to the feet, thoroughly soaking them and leaving it on for a long while so that it is fully absorbed. This was what was recommended by the famous Shute Brothers Clinic to prevent diabetic amputations.

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I’ll have to check that out, and thanks for the tips! I forgot to mention, the doc did highly suggest taking a multivitamin with the B spectrum. Already do that, so isn’t something new.

Do you have a recommendation for the benfotiamine supplement that is available in the U.S.? When I googled it, there are an awful lot of shady supplement companies in that particular market, and a lot of them seem to claim “blood sugar control” as a benefit. I’m not skeptical of the therapy (I read some of the articles last time you pointed to this supplement), but not sure where to find a quality source.

Cheers

The formula of benfotiamine is not difficult to replicate, so I generally trust most North American manufacturers. I used to import benfotiamine only from Germany, where it has been regularly used as a first-line treatment for diabetes since the 1990s, but since it was easier to buy it off the shelf where I live, I stopped a few years ago. I haven’t noticed any difference in neuropathic symptoms from having switched sources.

I have also never noticed any help with blood sugar levels from benfotiamine, and I know that it was never marketed for this in Germany.