Pephiral neuropathy and prediabetes?

[Gabby G]

Hey there,

Grateful to have found this forum! I just need some advice:

I’m in my early 30’s and had neuropathy symptoms start in 2017. I first thought it was carpal tunnel. It was stable for a number of years but started to spread in my feet with tingling and it’s now continued to get worse.

I have polyneuropathy so it affects a lot of my nerves now including my feet and hands. My left food started to go a bit numb aswell as my right hand with on and off pins and needles. I’ve had trigeminal nerve pain in my temples and pain in my tongue. The nerve pain seems to change every few weeks. I also believe my digestive system has been affected as I have acid reflux ( which I never used to have) and troubles with indigestion now.

I was diagnosed as prediabetic last year on a Hb1ac of 42 ( which surprised me for my symptoms I thought it would be higher). I changed my diet and started exercising and now it’s down to 37 so I’m no longer in the range. However my symptoms still seem to be there and I really was hoping this would change.

My doctor was suggesting it may not be linked but a previous appointment with the neurologist said it’s most likely linked. I’ve had an MRI done which came back fine.

I’m feeling a bit stuck on what to do as I was hoping some of my symptoms would decrease. It’s taking a while to get a referral on the nhs for a neurologist, is it worth looking into anything else. Has anyone had the same experience? My doctor and I are a bit confused about all the symptoms as they said this usually happens with very uncontrolled diabetes.

 

[Antje77]

My doctor and I are a bit confused about all the symptoms as they said this usually happens with very uncontrolled diabetes.

Hi @Gabby G , welcome to the forum.

Those sound like very unpleasant symptoms, and not at all how you'd expect diabetic neuropathy to manifest if you're only at the absolute lowest threshold for prediabetes.
However, while diabetes is the most common cause for neuropathy, it's by no means the only one.

I hope your doctor has done all the blood tests to rule out various causes?

Peripheral neuropathy - Causes

Find out about the causes of peripheral neuropathy. In the UK, the most common cause of peripheral neuropathy is diabetes.

www.nhs.uk

 

[KennyA]

Hey there,

Grateful to have found this forum! I just need some advice:

I’m in my early 30’s and had neuropathy symptoms start in 2017. I first thought it was carpal tunnel. It was stable for a number of years but started to spread in my feet with tingling and it’s now continued to get worse.

I have polyneuropathy so it affects a lot of my nerves now including my feet and hands. My left food started to go a bit numb aswell as my right hand with on and off pins and needles. I’ve had trigeminal nerve pain in my temples and pain in my tongue. The nerve pain seems to change every few weeks. I also believe my digestive system has been affected as I have acid reflux ( which I never used to have) and troubles with indigestion now.

I was diagnosed as prediabetic last year on a Hb1ac of 42 ( which surprised me for my symptoms I thought it would be higher). I changed my diet and started exercising and now it’s down to 37 so I’m no longer in the range. However my symptoms still seem to be there and I really was hoping this would change.

My doctor was suggesting it may not be linked but a previous appointment with the neurologist said it’s most likely linked. I’ve had an MRI done which came back fine.

I’m feeling a bit stuck on what to do as I was hoping some of my symptoms would decrease. It’s taking a while to get a referral on the nhs for a neurologist, is it worth looking into anything else. Has anyone had the same experience? My doctor and I are a bit confused about all the symptoms as they said this usually happens with very uncontrolled diabetes.

Hi Gabby G and welcome. My experience was similar to yours, up to a point.

Like you I had a range of diabetic symptoms while my BGs were quite low. As well as a dozen other symptoms I developed neuropathy - burning feet, stabbing pains, pins and needles - around 2014. My BG was around 43 at the time, although I only found this out years later. I was firmly assured that I didn't have T2 diabetes as my blood sugar wasn't high enough. I thought - if the medics say it's not diabetes then there's no point me doing anything diabetes related.

So I had about six years of that before my BG eventually rose to the point in December 2019/January 2020 where they told me I did have diabetes. I'd found this place by then and went (very) low carb. By April 2020 my A1c was 36 and the neuropathy had gone. Almost entirely - I still have a slight tingle which is probably permanent but it's not painful.

So I'm with you right up to the point where your symptoms don't decrease. In my view it's the high blood sugar that causes the damage, so reducing that should reduce the damage. The other possibility is that it's something else entirely, and your diabetes is just a coincidence.

In your shoes I'd push hard for the neurologist referral.

 

[Gabby G]

Those sound like very unpleasant symptoms, and not at all how you'd expect diabetic neuropathy to manifest if you're only at the absolute lowest threshold for prediabetes.
However, while diabetes is the most common cause for neuropathy, it's by no means the only one.

I hope your doctor has done all the blood tests to rule out various causes?

Hi thanks for your welcome and reply! Yes, it’s all a bit confusing. I’m looking into a few causes with my GP. Unfortunately the previous neurologist rejected my second referral and it will take a while to get another one

 

[Gabby G]

Hi Gabby G and welcome. My experience was similar to yours, up to a point.

Like you I had a range of diabetic symptoms while my BGs were quite low. As well as a dozen other symptoms I developed neuropathy - burning feet, stabbing pains, pins and needles - around 2014. My BG was around 43 at the time, although I only found this out years later. I was firmly assured that I didn't have T2 diabetes as my blood sugar wasn't high enough. I thought - if the medics say it's not diabetes then there's no point me doing anything diabetes related.

So I had about six years of that before my BG eventually rose to the point in December 2019/January 2020 where they told me I did have diabetes. I'd found this place by then and went (very) low carb. By April 2020 my A1c was 36 and the neuropathy had gone. Almost entirely - I still have a slight tingle which is probably permanent but it's not painful.

So I'm with you right up to the point where your symptoms don't decrease. In my view it's the high blood sugar that causes the damage, so reducing that should reduce the damage. The other possibility is that it's something else entirely, and your diabetes is just a coincidence.

In your shoes I'd push hard for the neurologist referral.

Hi Kenny,

Thanks for your reply and that’s encouraging to hear you were able to reduce your symptoms!

Finding this forum I’ve also seen a few people mention they did have symptoms even on the pre-diabetic borderline so it’s making me wonder with what you just mentioned! I’m trying my best to stick to a low carb diet, although maybe in the past week or two I haven’t been so strict. I think I may need to take your advice and be a bit stricter.

It seems to be working in the past few months with the reduction in my hb1ac result, just sadly hasn’t had any effect on my symptoms just yet. I’ve bought R-ala and some other supplements in the hopes it will be more helpful and now have got a CGM so will monitor so let’s see if that helps.

Will keep an eye! Appreciate the welcome too

 

[KennyA]

n

Hi Kenny,

Thanks for your reply and that’s encouraging to hear you were able to reduce your symptoms!

Finding this forum I’ve also seen a few people mention they did have symptoms even on the pre-diabetic borderline so it’s making me wonder with what you just mentioned! I’m trying my best to stick to a low carb diet, although maybe in the past week or two I haven’t been so strict. I think I may need to take your advice and be a bit stricter.

It seems to be working in the past few months with the reduction in my hb1ac result, just sadly hasn’t had any effect on my symptoms just yet. I’ve bought R-ala and some other supplements in the hopes it will be more helpful and now have got a CGM so will monitor so let’s see if that helps.

Will keep an eye! Appreciate the welcome too

No problem - just to complete the story, the "diagnosis at 48" is comparatively recent. There was international agreement in around 2008 that countries would all accept a BG level of 48 as being diagnostic for T2. This agreement however did not exclude anyone diagnosing diabetes at lower BG levels - the 48 was designed as a backstop so comparisons could be made across different healthcare systems - it wasn't done for patients.

The problem has been that the NHS has decided that it will now ONLY diagnose T2 at a level of 48. This means a couple of things - that there are a considerable number of us who have or had T2 symptoms at lower BG levels - ie, we have T2, but who aren't officially defined as such; and that the idea of "pre-diabetes" has had to be invented to account for the gap between "normal" BG levels (see graph) and the bogus (in my opinion) diagnostic point.

 

[Alexandra100]

. I also believe my digestive system has been affected as I have acid reflux ( which I never used to have) and troubles with indigestion now.

Before I began eating low carb to try to lower my bg levels, I used to have mega problems with acid reflux and other digestive problems, including dreadful bouts of constipation. My worst known A1c was only 41, but I had packets of Rennies stashed in every room of my house, and every handbag too. To manage the constipation I was getting through x3 suppositories daily. (Good thing I could get them free on the NHS!) Eating lower and lower carb, gradually the reflux and constipation went away. It must be years since I needed a Rennie, and I'm wondering what to do with all those un-needed suppositories. It seems a terrible waste to throw them away.

A male friend with properly diagnosed diabetes has had a similar experience, except he was on a Proton Pump Inhibitor, and has now completely come off that. His partner does not have raised bg but did suffer a lot from reflux, so much so that she was thinking she might need an operation. Just giving up bananas has fixed her problem.

Good luck!

 

[Alexandra100]

Finding this forum I’ve also seen a few people mention they did have symptoms even on the pre-diabetic borderline so it’s making me wonder

You might like to have a look at the Youtube videos called "Beat Diabetes" by Dennis Pollock. He has often mentioned his own diabetes history, when as a young man he suffered from Reactive Hypo and Hyper-glycaemia. Lots of the thousands of people who have contacted him and shared their stories had all sorts of symptoms long before their A1cs were even at pre-diabetic levels. This happened to me too.

 

[Alexandra100]

I changed my diet and started exercising and now it’s down to 37

Brilliant !

 

[Alexandra100]

I'm with you right up to the point where your symptoms don't decrease. In my view it's the high blood sugar that causes the damage, so reducing that should reduce the damage.

I agree, reducing bg levels should stop the damage from getting worse, but not all damage can actually be reversed, or reversing it may take a long time (weeks, months, even years). I am basing this on Dr Richard K Bernstein's classic book "Diabetes Solution". Dr B has generously made a lot of his book available free online.

http://www.diabetes-book.com/read-online-diabetes-solution/
Here is an extract:

"DIABETIC NEUROPATHIES​

Diabetic neuropathies seem to improve in two phases—a rapid partial improvement that may occur within weeks, followed by sustained very slow improvement that goes on for years if blood sugars continue to remain normal. This is most apparent with numbness or pain in the toes. Some people will even comment,“ I know right away if my blood sugar is high, because my toes feel numb again.” On the other hand, several patients with total numbness of their feet have complained of severe pain after several months of near-normal blood sugars. This continues for a number of months and eventually resolves as sensation returns. It is as if nerves generate pain signals while they heal or “sprout.” The experience may be very frightening and distressing if you haven’t been warned that it might occur."

 

[ElenaP]

. . . . . . . . . Dr Richard K Bernstein's classic book "Diabetes Solution". Dr B has generously made a lot of his book available free online.

http://www.diabetes-book.com/read-online-diabetes-solution/

Thank you for enclosing this link. I kept using my copy as a reference book for years and years. Then I lent it to my nephew, whose house was flooded six months months ago (first time in more than a hundred years). All books were submerged in a meter of water.

 

[sandyftz]

My chiropodist/osteopath has diagnosed me with neuroma in my foot. I got terrible stabbing pains around side of my foot and down to my toes. So painful could not put my foot to the floor. He made me some shoe inserts, which, thank goodness, help me be pain free. Probably nothing to do with your problem but I feel your pain. I wish you luck with getting the problem sorted

 

[Bomber1956]

Hey there,

Grateful to have found this forum! I just need some advice:

I’m in my early 30’s and had neuropathy symptoms start in 2017. I first thought it was carpal tunnel. It was stable for a number of years but started to spread in my feet with tingling and it’s now continued to get worse.

I have polyneuropathy so it affects a lot of my nerves now including my feet and hands. My left food started to go a bit numb aswell as my right hand with on and off pins and needles. I’ve had trigeminal nerve pain in my temples and pain in my tongue. The nerve pain seems to change every few weeks. I also believe my digestive system has been affected as I have acid reflux ( which I never used to have) and troubles with indigestion now.

I was diagnosed as prediabetic last year on a Hb1ac of 42 ( which surprised me for my symptoms I thought it would be higher). I changed my diet and started exercising and now it’s down to 37 so I’m no longer in the range. However my symptoms still seem to be there and I really was hoping this would change.

My doctor was suggesting it may not be linked but a previous appointment with the neurologist said it’s most likely linked. I’ve had an MRI done which came back fine.

I’m feeling a bit stuck on what to do as I was hoping some of my symptoms would decrease. It’s taking a while to get a referral on the nhs for a neurologist, is it worth looking into anything else. Has anyone had the same experience? My doctor and I are a bit confused about all the symptoms as they said this usually happens with very uncontrolled diabetes.

Hi there,

I had tingling and pins and needles in my hands and I was told Carpal tunnel was issue and I had both hands operated on. Tingling returned in a month or so....I was eventually seen by a consultant and after a scan he said my Ulnar nerve was squeezed between my neck vertebrae, hence both hands and arms. A dangerous op
apparently....I have been on amitriptyline ever since which gave a good ten years of relief. However as I age, I'm 67, it has begun again and the drugs aren't working as well. I'm T1...

 

[Tris83]

Hey there,

Grateful to have found this forum! I just need some advice:

I’m in my early 30’s and had neuropathy symptoms start in 2017. I first thought it was carpal tunnel. It was stable for a number of years but started to spread in my feet with tingling and it’s now continued to get worse.

I have polyneuropathy so it affects a lot of my nerves now including my feet and hands. My left food started to go a bit numb aswell as my right hand with on and off pins and needles. I’ve had trigeminal nerve pain in my temples and pain in my tongue. The nerve pain seems to change every few weeks. I also believe my digestive system has been affected as I have acid reflux ( which I never used to have) and troubles with indigestion now.

I was diagnosed as prediabetic last year on a Hb1ac of 42 ( which surprised me for my symptoms I thought it would be higher). I changed my diet and started exercising and now it’s down to 37 so I’m no longer in the range. However my symptoms still seem to be there and I really was hoping this would change.

My doctor was suggesting it may not be linked but a previous appointment with the neurologist said it’s most likely linked. I’ve had an MRI done which came back fine.

I’m feeling a bit stuck on what to do as I was hoping some of my symptoms would decrease. It’s taking a while to get a referral on the nhs for a neurologist, is it worth looking into anything else. Has anyone had the same experience? My doctor and I are a bit confused about all the symptoms as they said this usually happens with very uncontrolled diabetes.

If you have this it will never go away now all of your nerve endings have been destroyed unfortunately only thing to be done is control your diabetes to avoid anymore damage sorry for your suffering , I have neuropathy in my hands and feet and it’s awful but I take seratonin it’s an antidepressant to help with the pain contact your doctor for options as there are loads of meds to help with the pain