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Not even diagnosed but tingly/numb feet - really worried

M

mike_maple

Member
Messages
9
Type of diabetes
Other
Treatment type
Other
Hi folks,
I'm 47 and have had tingly feet off and on for about the last 3 weeks, with the problem getting more pronouced this week. Thought I heard years ago that this was one of the first symptoms. Saw a doctor the other day, he's lined up some tests, but not for over a week. Since then I've really been cutting back on sugar/carbs, though I haven't been totally off carbs as some suggest (just learned this tonight). It's been an emotional time for me I admit with the full realisation of what it means, but have been more positive today and especially being on this forum with the advice given.

Now I learn that Peripheral Neuropathy is a later stage complication! I'm scared stiff! What do I do? Any advice greatfully recieved.
Thanks
Mike
 
I should add that I've not had any of the usual diabetes symptoms listed. I've lost nearly a stone recently though I think that's just through the act of cutting back on food in the past 3 weeks. (I was 16 stone or therabouts.)
 
mike_maple said:
Hi folks,
I'm 47 and have had tingly feet off and on for about the last 3 weeks, with the problem getting more pronouced this week. Thought I heard years ago that this was one of the first symptoms. Saw a doctor the other day, he's lined up some tests, but not for over a week. Since then I've really been cutting back on sugar/carbs, though I haven't been totally off carbs as some suggest (just learned this tonight). It's been an emotional time for me I admit with the full realisation of what it means, but have been more positive today and especially being on this forum with the advice given.

Now I learn that Peripheral Neuropathy is a later stage complication! I'm scared stiff! What do I do? Any advice greatfully recieved.
Thanks
Mike
Click to expand...
Hi Mike and welcome to the forums.

You're finding out something right away - a lot of the stuff you read on the internet about diabetes is very confusing. I should say straight away that nobody on the forum is capable of diagnosing, so you will not get a definitive answer here. And there is more than one cause of tingling and pains in the feet. But here's my Type 2 story.

Around 2014 I developed tingling, stabbing pains, and burning in my feet. It stopped me sleeping. Went to the doctor, and was firmly told it couldn't be neuropathy (the same as I'd been told with all my other diabetic symptoms) as I wasn't diabetic as my blood glucose wasn't high.

Roll forward five years (five years of pain) and I was belatedly diagnosed as T2 diabetic. Looking back through my records I discovered that my HbA1c was around 44 in 2014 - definitely out of normal range, and climbing. In December 2019 I cut carbs to 20g/day. By April 2020 my HbA1c was 36 and almost all the neuropathy had gone along with the other symptoms. I still have a very mild tingle, but you couldn't call it pain. It does look like permanent damage, though.

In short, some of us are more susceptible to elevated blood glucose than others. I have friends whose BG is much higher than mine ever was, and they claim to have no symptoms. I had a full set of symptoms with an A1c in the mid-40s.

Some sources will say that neuropathy is a "later-stage complication" because people in the later stages of diabetes generally have neuropathy. It doesn't follow that ONLY people in the later stages of diabetes have neuropathy, so don't worry overmuch about that.

I'd also recommend getting hold of a glucose meter and using it on a structured basis. If you do need to reduce your blood glucose, what you eat has by far the biggest impact on glucose levels. And high glucose levels is mainly what causes the problems.

Best of luck. This forum is a great resoiurce, and there are no stupid questions.
 
Thank you KennyA for your in depth post, much appreciated. I have ordered tonight a glucose meter and will be using it as you suggest. I'm going to cut the carbs out totally until I know more as a precaution. I'd say wish me luck, but you already have done! I'll need it too as going on a cruise ship in two weeks....
 
mike_maple said:
Thank you KennyA for your in depth post, much appreciated. I have ordered tonight a glucose meter and will be using it as you suggest. I'm going to cut the carbs out totally until I know more as a precaution. I'd say wish me luck, but you already have done! I'll need it too as going on a cruise ship in two weeks....
Click to expand...
Personally I'd hesitate to make any drastic changes in my diet till I knew what my blood sugar levels were and indeed, even if I had diabetes. At this stage you have some symptoms that may or may not be related to (as yet undiagnosed) diabetes. New diabetics are generally recommended to lower their bg levels slowly, as a too fast drop can cause issues with eyes.
 
Personally I would wait for the results of the tests and see what the Dr has to say before you worry. Lots of things can cause tingly feet. You might not even be diabetic?
 
When I had tingling in my hands sensations I started taking vitamin B12 and some Alpha Lipoic Acid supplements. Vitamin B12 deficiency can cause neuropathy symptoms.
 
Thanks everyone, that's good to know. Will stay put on the reduced but not cut out carbs then for the moment.
The doctor did mention B12 deficiency, but as I'm overweight and eat too much chocolate and ice cream, I dismissed it as false hope. Will try the supplements you mention Art Of Flowers (ace handle by the way - Florist? Gardener? Passionate gardener myself.)
 
mike_maple said:
Thank you KennyA for your in depth post, much appreciated. I have ordered tonight a glucose meter and will be using it as you suggest. I'm going to cut the carbs out totally until I know more as a precaution. I'd say wish me luck, but you already have done! I'll need it too as going on a cruise ship in two weeks....
Click to expand...
All of this depends on the "if you do need to reduce your blood glucose levels" question. If you don't need to reduce, because you're not out of normal range, the meter won't be telling you much useful. Non-diabetic people have variable blood glucose, in response to various things.
 
mike_maple said:
Thanks everyone, that's good to know. Will stay put on the reduced but not cut out carbs then for the moment.
The doctor did mention B12 deficiency, but as I'm overweight and eat too much chocolate and ice cream, I dismissed it as false hope. Will try the supplements you mention Art Of Flowers (ace handle by the way - Florist? Gardener? Passionate gardener myself.)
Click to expand...
I am a member of the RHS and a life member of the National Trust. I like to take macro shots of flowers. See here for some of my flower close-up shots at Wisley Gardens.
 
How excellent, I'm an RHS member too! Will take a look now at your macro shots. Just taken my first B12 tablet (will have to get the acid online I think).
Just drank deeply of your beautiful flower pics, such gorgeous Peonies and Roses. Wish I lived closer to one of the gardens (Leicestershire based, so roughly equidistant to 3). That said, visited Elton Hall in Cambridgeshire yesterday which was lovely.
 
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You're not wrong, the fear of permanent nerve damage possibly spreading to my fingers is awful. I just hope I get the results and hopefully treatment before I go away on holiday.
I've not taken the vitamin b12 supplements (bar 1) as one of the tests is for B12.
 
mike_maple said:
Thanks everyone, that's good to know. Will stay put on the reduced but not cut out carbs then for the moment.
The doctor did mention B12 deficiency, but as I'm overweight and eat too much chocolate and ice cream, I dismissed it as false hope. Will try the supplements you mention Art Of Flowers (ace handle by the way - Florist? Gardener? Passionate gardener myself.)
Click to expand...
I’m type 1 for over 20 years, but have been told by 2 neurologists that I don’t have diabetic neuropathy. My recent neurologist diagnosed me with B12 deficiency and I am on mega doses for the foreseeable future. For now, that’s all he has diagnosed me with. I’m terrified and my symptoms skyrocketed when I began the treatment. He wants me to be evaluated for Sjogren’s Syndrome as well, just in case. I don‘t have any of those symptoms though, just dry eye. I have an appointment for that in August.

B12 deficiency is very serious and can bring permanent damage. I suspect I have that.

Please get tested for B12 BEFORE you start taking it. The first number before supplements are what they look at. Not everyone can process it and some need injections or sublingual tablets. Please put a rush on your B12 tests if possible. And, research how to replenish it. Many doctors are not well informed of how much people need to treat a deficiency. Find an expert who can ensure you get enough to help. I thought I was treated last year, but it was inadequate.
 
Hi folks, sorry to have taken so long (been away on holiday), but my results are back and thankfully my AC1 levels are normal, so no diabetes thankfully, though it's been a huge wakeup call for me that's for sure.
No conclusive results as to why I got peripheral neuropathy, all tests came back normal aside from Thyroid function test which was borderline, though as I have endocrine issues that's normal for me it seems. Doctor has referred me to Neurology, we'll see what happens. Feet are no longer tingly, just numb on and off, with some sensitive toes, so it might just be that the damage has been done and I'll just have to get used to it.
Thanks again all for your help and advice, it really helped me in what was a worrying time.
 
Prancy said:
I’m type 1 for over 20 years, but have been told by 2 neurologists that I don’t have diabetic neuropathy. My recent neurologist diagnosed me with B12 deficiency and I am on mega doses for the foreseeable future. For now, that’s all he has diagnosed me with. I’m terrified and my symptoms skyrocketed when I began the treatment. He wants me to be evaluated for Sjogren’s Syndrome as well, just in case. I don‘t have any of those symptoms though, just dry eye. I have an appointment for that in August.

B12 deficiency is very serious and can bring permanent damage. I suspect I have that.

Please get tested for B12 BEFORE you start taking it. The first number before supplements are what they look at. Not everyone can process it and some need injections or sublingual tablets. Please put a rush on your B12 tests if possible. And, research how to replenish it. Many doctors are not well informed of how much people need to treat a deficiency. Find an expert who can ensure you get enough to help. I thought I was treated last year, but it was inadequate.
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I agree with this. I have just had my latest bloods back and B12 has gone from being at the bottom of normal to below the lowest number they measure. I am going to ask for a test for pernicious anaemia as I have family history of that, luckily I dont have many symptoms apart from lethargy, bit of fatigue, so I'm hoping it got caught early before it does damage because I've also read that damage can be permanent. Apparently half of B12 deficiencies can be caused by pernicious anaemia which is auto immune so if, like you (and me) have autoimmune diabetes its more likely. Definitely worth getting checked out, they've put me on tablets for now but may need injections if it doesn't improve enough.
 
ATB123 said:
I agree with this. I have just had my latest bloods back and B12 has gone from being at the bottom of normal to below the lowest number they measure. I am going to ask for a test for pernicious anaemia as I have family history of that, luckily I dont have many symptoms apart from lethargy, bit of fatigue, so I'm hoping it got caught early before it does damage because I've also read that damage can be permanent. Apparently half of B12 deficiencies can be caused by pernicious anaemia which is auto immune so if, like you (and me) have autoimmune diabetes its more likely. Definitely worth getting checked out, they've put me on tablets for now but may need injections if it doesn't improve enough.
Click to expand...
Thank goodness you caught it! Man…..that’s a relief. Good idea to test for anemia. Are you going to take B12 sublingual tablets? I’m taking that 1000 mg a day indefinitely for now, I have seen substantial improvement in my body since starting the treatment. The tingling in my hands and arms has stopped waking me up at night and I’m no longer sleeping on my back with arms supported on pillows.
 
Prancy said:
Thank goodness you caught it! Man…..that’s a relief. Good idea to test for anemia. Are you going to take B12 sublingual tablets? I’m taking that 1000 mg a day indefinitely for now, I have seen substantial improvement in my body since starting the treatment. The tingling in my hands and arms has stopped waking me up at night and I’m no longer sleeping on my back with arms supported on pillows.
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Yes, I've been prescribed 1mg a day, 1000mg sounds a lot?
 
ATB123 said:
Yes, I've been prescribed 1mg a day, 1000mg sounds a lot?
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Correction 1000 mcg sublingual per day. I thought it sounded like a lot, but discovered it’s common to prescribe high doses for those with deficiencies. I suspect at some point the doctor will reduce it.
 
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