Neuropathy help :(

Jorgie123

Newbie
Messages
3
Type of diabetes
Type 1
Hi everyone, after some advice please. Il try and keep it sort. Iv had type 1 diabetes for 23 years. Blood sugars never been perfect but not been too bad, first 20 years as a child and teenager hba1c 7.5-8.5 and now last two years it has been 6.5-7.5. Always seemed to manage ok with it, just got on with it really as not known much else. However, about a year ago I started with tingling in both my feet. Obviously very upset about this when I realised it could be related to neuropathy. Diabetes team don't seem phased about it at all and iv actually been told to 'chill out' by my consultant bit hard to chill out when your 30 years old and faced with peripheral neuropathy. Anyway it went for a couple of months and now back but feeling stinging type pains in my right toes on the tips. Spoke to team again and again told to just basically go home and keep blood sugars well controlled which they are with a hba1c on 6.5. So just looking for some advice/help from anyone that has neuropathy and especially had it for a long time? My mind is going crazy, I can't stop crying thinking I am going to be in a wheelchair and not be able to walk, drive, work etc. Feel like iv got so much to look forward to in life and now feeling in despair. Please if anyone has any good advice to tell me or happy stories please share thanks xx
 
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Deb1million

Active Member
Messages
30
Type of diabetes
Type 1
Treatment type
Insulin
Hi Jorgie
Try not to worry, it doesn't always mean a wheelchair is waiting for you! I've been T1 for 52 years, and have had peripheral tingling for many years without any progression. Like you, I try to keep my hb1 as good as possible, which helps. Stress won't help you in any way, so please try not to worry, you are doing well with your results

Good luck xx
 

Freema

Expert
Messages
7,346
Type of diabetes
Type 2
Treatment type
Diet only
just want to say welcome here Jorgie123 :)
hope you´ll find help here ..
I´ll @daisy1 so you´ll get the very valuable information every new person in here gets.
 
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Dairygrade

Well-Known Member
Messages
314
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
Having diabetes
Hi jorgie123 sorry to here your having a hard time you're blood sugars look ok has your consultant examined your feet I've got neuropathy and every time I have my six month checkups my dsn always has a good look at my feet and toes just surprised they told you to chill don't know how your to chill out with what you've got going on must admit they say the same to me just keep sugars under control its not easy being diabetic with the side affects when you see your consultant again ask if you can be referred to a vascular surgeon that's how I found out I had neuropathy for sure and take it from there don't forget to keep looking on forum I'm sure a lot of people are or have been the same as you don't dispare there's plenty of help on here . Thinking of you all the best
 
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therower

Well-Known Member
Messages
3,922
Type of diabetes
Type 1
Treatment type
Insulin
Welcome to the forum @Jorgie123 . Sorry to hear that you are concerned about the possibility of having peripheral neuropathy.
Firstly I'm no expert on the subject. About 8 months ago I started to get a strange feeling in my foot, a numbness best way to describe it. First thought was neuropathy, 27 yrs after first being diagnosed. Have to admit BS control had been off for a month or so, running slightly high. Did some research and made some interesting finds.
1st good control is foremost.
2nd alpha lipoid acid is thought to be very good at helping the nervous system stay healthy. Apparently ala is prescribed to T1 diabetics in Germany as a matter of course as they feel it is proven to prevent neuropathy. A daily dose of 600mg daily seems to be the way to go. Obviously consulting your GP or DSN before starting on any new medication is essential. ALA can increase insulin sensitivity hence caution is also needed.
3rd vitamin B12 is considered to be beneficial in helping with neuropathy.
I have taken on board all three of the above, within 2 weeks my foot was back to normal and I'm still on the ala and B12 as it doesn't seem to be doing any harm. If it's good for the Germans then it's good for me.
I'm sure if you search the forum you'll get a lot more info regarding neuropathy. Good luck.
 
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Juicetin

Well-Known Member
Messages
350
Type of diabetes
Prediabetes
Treatment type
Diet only
Welcome to the forum @Jorgie123 . Sorry to hear that you are concerned about the possibility of having peripheral neuropathy.
Firstly I'm no expert on the subject. About 8 months ago I started to get a strange feeling in my foot, a numbness best way to describe it. First thought was neuropathy, 27 yrs after first being diagnosed. Have to admit BS control had been off for a month or so, running slightly high. Did some research and made some interesting finds.
1st good control is foremost.
2nd alpha lipoid acid is thought to be very good at helping the nervous system stay healthy. Apparently ala is prescribed to T1 diabetics in Germany as a matter of course as they feel it is proven to prevent neuropathy. A daily dose of 600mg daily seems to be the way to go. Obviously consulting your GP or DSN before starting on any new medication is essential. ALA can increase insulin sensitivity hence caution is also needed.
3rd vitamin B12 is considered to be beneficial in helping with neuropathy.
I have taken on board all three of the above, within 2 weeks my foot was back to normal and I'm still on the ala and B12 as it doesn't seem to be doing any harm. If it's good for the Germans then it's good for me.
I'm sure if you search the forum you'll get a lot more info regarding neuropathy. Good luck.
What dosage of b12 are you taking out of interest?
Are you taking b1 as well?
I'm taking all 3 of these, my neuropathy was much better for a while but now back again.
 
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Jorgie123

Newbie
Messages
3
Type of diabetes
Type 1
Thanks for the welcome and all the replies. It really means a lot. If the neuropathy stays like it is now then it is more than manageable without pain relief but it's just the worry that it will get worse over time. I am also a nurse and I see the worst cases of peripheral neuropathy and diabetes in general. It never used to bother me but now I just can't stop crying thinking of the future. I have a husband and a young child and was hoping for another child but now this has started I'm not sure it's such a good idea (may sound dramatic to some i know). I can't help but over worry. With them tablets can you buy them over the counter or are they prescription only? Thanks again xx
 

Freema

Expert
Messages
7,346
Type of diabetes
Type 2
Treatment type
Diet only
Thanks for the welcome and all the replies. It really means a lot. If the neuropathy stays like it is now then it is more than manageable without pain relief but it's just the worry that it will get worse over time. I am also a nurse and I see the worst cases of peripheral neuropathy and diabetes in general. It never used to bother me but now I just can't stop crying thinking of the future. I have a husband and a young child and was hoping for another child but now this has started I'm not sure it's such a good idea (may sound dramatic to some i know). I can't help but over worry. With them tablets can you buy them over the counter or are they prescription only? Thanks again xx

R-alpha lipoic acid ... you can get the right kind here... a very reliable web-shop takes 5-7 days to get orders (from Germany)9

https://www.apo-rot.dk/index_detail...=-1566725743&_filterartnr=10045245&_nav=suche
 

Juicetin

Well-Known Member
Messages
350
Type of diabetes
Prediabetes
Treatment type
Diet only
Most ALA is a 50/50 mix of the superior r-ala and less effective s-ala. A 600mg tablet contains 300mg of r-ALA and the purity of it is the same as the expensive r-ala sold separately (I have checked this with several manufacturers).
 

daisy1

Legend
Messages
26,457
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Dislikes
Cruelty towards animals.
@Jorgie123

Hello Jorgie and welcome to the Forum :) Here is the Basic Information we give to new members and I hope you will find it useful even though you have had diabetes for a long time. Ask as many questions as you want and someone will be able to help.


BASIC INFORMATION FOR NEW MEMBERS

Diabetes is the general term to describe people who have blood that is sweeter than normal. A number of different types of diabetes exist.

A diagnosis of diabetes tends to be a big shock for most of us. It’s far from the end of the world though and on this forum you'll find well over 147,000 people who are demonstrating this.

On the forum we have found that with the number of new people being diagnosed with diabetes each day, sometimes the NHS is not being able to give all the advice it would perhaps like to deliver - particularly with regards to people with type 2 diabetes.

The role of carbohydrate

Carbohydrates are a factor in diabetes because they ultimately break down into sugar (glucose) within our blood. We then need enough insulin to either convert the blood sugar into energy for our body, or to store the blood sugar as body fat.

If the amount of carbohydrate we take in is more than our body’s own (or injected) insulin can cope with, then our blood sugar will rise.

The bad news

Research indicates that raised blood sugar levels over a period of years can lead to organ damage, commonly referred to as diabetic complications.

The good news

People on the forum here have shown that there is plenty of opportunity to keep blood sugar levels from going too high. It’s a daily task but it’s within our reach and it’s well worth the effort.

Controlling your carbs

The info below is primarily aimed at people with type 2 diabetes, however, it may also be of benefit for other types of diabetes as well.

There are two approaches to controlling your carbs:
  • Reduce your carbohydrate intake
  • Choose ‘better’ carbohydrates
Reduce your carbohydrates

A large number of people on this forum have chosen to reduce the amount of carbohydrates they eat as they have found this to be an effective way of improving (lowering) their blood sugar levels.

The carbohydrates which tend to have the most pronounced effect on blood sugar levels tend to be starchy carbohydrates such as rice, pasta, bread, potatoes and similar root vegetables, flour based products (pastry, cakes, biscuits, battered food etc) and certain fruits.

Choosing better carbohydrates

The low glycaemic index diet is often favoured by healthcare professionals but some people with diabetes find that low GI does not help their blood sugar enough and may wish to cut out these foods altogether.

Read more on carbohydrates and diabetes.

Over 145,000 people have taken part in the Low Carb Program - a free 10 week structured education course that is helping people lose weight and reduce medication dependency by explaining the science behind carbs, insulin and GI.

Eating what works for you

Different people respond differently to different types of food. What works for one person may not work so well for another. The best way to see which foods are working for you is to test your blood sugar with a glucose meter.

To be able to see what effect a particular type of food or meal has on your blood sugar is to do a test before the meal and then test after the meal. A test 2 hours after the meal gives a good idea of how your body has reacted to the meal.

The blood sugar ranges recommended by NICE are as follows:

Blood glucose ranges for type 2 diabetes
  • Before meals: 4 to 7 mmol/l
  • 2 hours after meals: under 8.5 mmol/l
Blood glucose ranges for type 1 diabetes (adults)
  • Before meals: 4 to 7 mmol/l
  • 2 hours after meals: under 9 mmol/l
Blood glucose ranges for type 1 diabetes (children)
  • Before meals: 4 to 8 mmol/l
  • 2 hours after meals: under 10 mmol/l
However, those that are able to, may wish to keep blood sugar levels below the NICE after meal targets.

Access to blood glucose test strips

The NICE guidelines suggest that people newly diagnosed with type 2 diabetes should be offered:

  • structured education to every person and/or their carer at and around the time of diagnosis, with annual reinforcement and review
  • self-monitoring of plasma glucose to a person newly diagnosed with type 2 diabetes only as an integral part of his or her self-management education

Therefore both structured education and self-monitoring of blood glucose should be offered to people with type 2 diabetes. Read more on getting access to blood glucose testing supplies.

You may also be interested to read questions to ask at a diabetic clinic.

Note: This post has been edited from Sue/Ken's post to include up to date information.

Take part in Diabetes.co.uk digital education programs and improve your understanding. They're all free.
  • Low Carb Program - it's made front-page news of the New Scientist and The Times. Developed with 20,000 people with type 2 diabetes; 96% of people who take part recommend it... find out why :)
  • Hypo Program - improve your understanding of hypos. There's a version for people with diabetes, parents/guardians of children with type 1, children with type 1 diabetes, teachers and HCPs.
 

spook_kate_

Well-Known Member
Messages
650
Type of diabetes
Researcher
Treatment type
Other
Hey, how are you doing today?? I'm 34, been Type 1 for 31 yrs and the long term complications have set in. I also have agonised about future problems so really feel for you. I've 3 kids and worry about going blind as retinopathy / macular oedema has started setting in. My digestive system is in bits with gastroparesis and peripheral neuropathy so feel banjaxed. This forum is brilliant to sound off to, get advice and comfort. Hugs
 

jwma

Newbie
Messages
3
Type of diabetes
Type 2
Hi,
I have diabetic 'poly' neuropathy, I have had a liver transplant along with complications - as long as I still can 'smell the coffee' I am happy. My 'tough love' opinion is you are a winge----open the windows when it has stopped raining, smell the air, look at the people you care about === stop moaning and crying for attention. You at 30 years-old, enjoy your life. I am 68 - I look at my children and my grandchild - a context shared by many people here. I am a man - aged 68. Get a grip!
 

Goonergal

Master
Retired Moderator
Messages
13,465
Type of diabetes
Type 2
Treatment type
Diet only
Hi,
I have diabetic 'poly' neuropathy, I have had a liver transplant along with complications - as long as I still can 'smell the coffee' I am happy. My 'tough love' opinion is you are a winge----open the windows when it has stopped raining, smell the air, look at the people you care about === stop moaning and crying for attention. You at 30 years-old, enjoy your life. I am 68 - I look at my children and my grandchild - a context shared by many people here. I am a man - aged 68. Get a grip!

I really don't like the tone of your post. This forum is about non-judgment and support.

@Jorgie123 is obviously very concerned and did the right thing in looking to others for support and constructive advice.
 

Geordie_P

Well-Known Member
Messages
849
Type of diabetes
Type 2
Jorgie, I had fairly severe neuropathy in my feet and my right hand: one toe was totally numb-I could have put a pin in it and it wouldn't hurt, and then there were some related issues with tendons throughout my feet and elbows. With me, it was a combination of liver disease, type 2 and hyperlipidemia that had been doing the damage BUT I was able to reverse it. Not completely- I still have a numb toe, and soles of my feet are quite numb, and my right thumb isn't quite right, but the doctors said the damage isn't progressing, and is actually gradually improving. I know you are type 1, and there are some significantly different factors for you, but I just want to encourage you that there really are things that can be done with neuropathy, and I would not be at all surprised if there are viable options for your case

I'm attaching a link to a Dr. Bernstein video I once saw recommended elsewhere on the forum: his style isn't that slick, but there is some interesting info about neuropathy and nerve regrowth.Aside from that, he's a type 1 himself, and still a practising doctor at the age of 83, so hopefully he's a good example of the long, healthy, productive life you can still go on to enjoy (you deserve it!)