Long time member, infrequent visitor, but I need to reach out to some people in the know about diabetes.
I’ve been type 1 for 24 years (i’m 26).
I’ve always seemed to have pretty poor circulation in my hands and feet… Just now one of my toes is feeling numb, and it looks white. I get this a lot with my fingers especially when it’s cold out (even when I’m in the grocery store) where they get cold, and go a bit white. And it can take a long time for the blood to come back.
I feel like some of the fingers I unintentionally overuse with blood tests are worse (my left ring finger is almost always the first to go white). I think my capillary refill is just a few seconds normally (though not totally sure how to count). The numb toe
I don’t really know if this is related to diabetes or not… it doesn’t seem to fit with what I know about neuropathy. But what is it? I definitely feel this is not a normal thing to be happening, and I also feel like it has been getting worse, though my fingers and toes have gotten cold quickly as long as I can remember.
I asked my endocrinologist about it and I wasn’t sure if she understood what I was saying, but she insisted it was something other than diabetes… kinda brushed it off.
I just really want to know if this is something that happens to a lot of longtime diabetics… if it’s something not technically related, and what I can do, if anything, to make it happen yet… it’s quite stressful when it happens, especially because it often takes 10-15 minutes for a finger or toe to get back to normal.
I knew someone else that had this & I was just recently reading something about it so it came to mind when you described what you are going thru.
Raynaud’s is an autoimmune problem. You should make an appointment with a rheumatologist to be tested for it. I am surprised though that your endo would not have known that.
Sounds like Raynaud’s syndrome or the start of PAD. I have had this happen a few times during the cold winter months. It never happens in the summer unless I’m in a really, really cold room.
I believe that poor circulation can be affected by diabetes, but I wonder if you might have Raynauds Syndrome which affects the circulation in the extremities such as you have described. Sometimes it can be connected with arthritis and excema. It is worth pursuing.
I am also thinking Raynaud’s. My Mother has it and hers is associated with the systemic scleroderma she has. It is important for her not let her hands or feet, etc get cold or they turn purple and if really bad, it will look like she has really dirty hands when she doesn’t. Just to be safe you can also be checked for PAD or Peripheral Arterial Disease.
Neuropathy often involves pain as the nerves die, not just numbness. Anything that goes straight to numbness is probably something else, usually due to inflammation somewhere. I wouldn’t automatically assume that it’s neuropathy, especially if it comes and goes.
I have radiculopathy due to a spinal condition and it can cause both pain and numbness/weakness, but usually it just skips the pain… I get swelling within my spine, nerve roots get squished and I’ll just lose feeling on half my leg for as long as a few months (best case it’s a few weeks at a time). EMG’s have shown that the problem is not in my peripheral nerves.
I have always had this and I believe that it is due to hypothyroidism as well. Have you had your thyroid levels checked? They would be TSH, T3, & T4 on your blood work.
Does the tingling/numbness feel like your toe is “falling asleep” like your leg in school when you had to sit on it too long on the floor during story time? I get that a lot too more than I used to, especially in my fingers at night. I was worried for a while that I might have carpal tunnel, but after some research I found out that it affects different fingers than the ones I have go numb on me. I haven’t talked to my doctor about it, but maybe I should. This talk about PAD is scaring me a bit.
Does your numbness tend to happen when your BG is high (say over 200)? If so this could be an early sign that you need to pull your BGs down. What is your A1c?
I don’t know if my answer will help but i will leave one.
I am not a diabetic. I relate to diabetes by my really really loved 8 years old nepiew and a chance for metabolic syndrome caught early and treated with pills.
For about a year or two my hands go really numb too, especially at night. I don’t have to sleep on them. They go numb in any position after some time. And some times my feet go numb too. I went and checked my nerves on both arms and both of them main nerves (middle and small finger) and nothing at all showed up at the exam. It is hard because my orthopedist didn’t give me any solution and from the search on the internet no one really seems to know what is wrong with limbs go numb. And when i say numb i mean numb till the point of not feeling it at all or in much pain. I wake up at least 3 or 4 times every night from this. And sometimes when its cold my hands, especially my nails go blue.
That’s it! Forgive my bad english, its not my native language. Good luck from me.
yeah… sorta… i don’t really trust my family doctor he doesn’t believe in carpal tunnel syndrome and wouldn’t do a physical for me bc he said that these days we wait for symptoms before looking into anything lol
It’s really just when my extremities get cold.
Like if I drink a cold beer or an ice smoothie, my hand that’s holding the cup the fingers will go white and numb.
I do have hypothyroidism, but it’s theoretically under control with thyroxin. I haven’t personally checked my thyroid level, but I see my endo every 6 months and I presume she’d mention if my levels are out of whack. I’ll be sure to double check next blood test I do.
Occasionally my foot will fall asleep or feel numb but I don’t think more than normal.
That sounds a little different from what’s going on with me. I was talking to a friend though and he described something similar to what you mention… his doctor had given him the impression that it could be related to Sciatica,but you got your nerves checked so it’s maybe not that
That definitely sounds more like what’s going on than neuropathy. Yay! i don’t want neuropathy yet… i’ll take the Raynaud’s :p. although i don’t think it’s full blown raynaud’s… my symptoms don’t seem nearly as bad as they describe there. I probably won’t worry about it too much unless it gets markedly worse
We had taken an opportunity to visit my Aunt and Uncle one day. I happened to look down and spotted my hands on the table. Both were totally medium blue right up to my wrists, like a pair of gloves. Something happened similarly to my hands but not as dark a colour a few months later. I found that I could not hold cold objects for more than 20 seconds because my fingers and hands would start to sting and go usually go numb. I was dxd. with Raynaud’s Disease. I was about age 30 at that time and had already had Type 1 for about 27 yrs. and severe RA for about 6 yrs. I haven’t had any noticeable problems with Raynaud’s since.
Things were crazy all through 1999 for us, so my Diabetes wasn’t on my priority list of things to look after. I started feeling a numbness in my toe of my left foot. I left it for awhile cuz I didn’t have time for it or think it was serious. It felt like I was stepping on a little tube of water under my one toe. I checked but there was no blister, so I left it. Then one night I went to sleep and was awaken by stabbing pains all on the top of my left foot. By then, some of the sole of my left foot was also numb. Nothing helped with the nightly ritual of pain. I hadn’t been on a DOC yet, so I didn’t really know the symptoms of Neuropathy. Anyways, I went to my Endo and he said it was Neuropathy and pointed out my not-so-wonderful numbers.
I got back into Better blood sugar ranges and the pain and numbness went away, never to be felt by me again. There could be other reasons for yours, of course. I hope that you find your answer.
I’ve been under the impression neuropathy is generally not reversable! It’s good to hear about being able to make up for lapses in control when life demands them…
I am sure that many PWDs have asked the same questions. Although I don’t know the specific answer to your questions, I can describe what happened to me and then leave you to compare what others report.
My DR has told me that both hand and foot problems are very common in PWDs. I know that my toes are more sensitive to cold than they were before. (Years ago, I didn’t have problems with that since my feet were hot and stinky!) But, you are very right in keeping an eye on your feet. One little blister can cause a whole lot of problems; including a 1 inch deep wound that got infected and could have cost me a foot. One little callous can be ignored, get infected and cause another wound 1 inch deep so that eventually a part of a foot or leg or your life is lost.
I know this from very personal experience. I lost my left leg up to just short of the calf. Happened over a year ago. See my site if you wish to read about some of the turmoil they caused in my life.
Remember, keep an eye out. No matter what the cause, if something is not “kosher” for the foot, it can cause great harm!
he doesn’t believe in carpal tunnel syndrome and wouldn’t do a physical for me bc he said that these days we wait for symptoms before looking into anything lol
There could be other reasons for yours, of course. I hope that you find your answer.