Help in dealing with neuropathy

Winnie53

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Also came across this article today, "Should Patients Taking Metformin Also Take Vitamin B12?" - (if the link doesn't take you directly to the article, enter the article's title into Google....

http://www.medscape.com/viewarticle/817601

"Vitamin B12 deficiency is estimated to be present in up to 30% of patients with diabetes taking metformin. The risk for vitamin B12 deficiency increases with patient age and the dose and duration of metformin use. Concomitant conditions such as suboptimal dietary intake, which is common among vegetarians and alcohol abusers, and malabsorption due to atrophic gastritis, pernicious anemia, chronic pancreatitis, and celiac disease may further increase risk for vitamin B12 deficiency. The combination of metformin with proton pump inhibitors has been reported to have an additive effect on risk for vitamin B12 deficiency."

"Measurement of serum vitamin B12 levels often produces both false-negative and false-positive results and is unreliable for diagnosis. Vitamin B12 deficiency can be treated with oral supplements or intramuscular injections depending on type and severity of deficiency."
 

Winnie53

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I found a book that discusses two therapies of which I'm unfamiliar. Might be helpful. It'll arrive here late next week. For now, here's more supplements for diabetic neuropathy, listed in a lecture by Dr. Brian Mowll that I listened to today...

Vitamin B-12 - Deficiency common in diabetics because metformin depletes B-12.
Inositol - Evidence suggests that it may be effective in treating diabetic neuropathy.
Carnitine - Reduces, even prevents pain from diabetic neuropathy; improves insulin sensitivity by increasing glucose uptake and storage.
Alpha Lipoic Acid - Enhances glucose uptake in skeletal muscle tissues. Improves glucose tolerance in type 2 diabetes. Very effective treatment for diabetic neuropathy.
Magnesium - Deficiency reduces insulin sensitivity. Low magnesium exacerbates foot ulcers in diabetes, [which is a complication of diabetic neuropathy].

Other supplements were listed too, but these were the ones specific to diabetic neuropathy.
 

Grins

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When my neuropathy was bad i started taking Thiamine, this is a very high dose of Vitamin B12 and this really made a difference.

Even though my bloods showed my B12 levels to be fine, it still made a significant difference to the pain.

I maintained good control and the neuropathy resolved itself after 12 months. Sometimes the body just needs time to repair itself.
Hi would you be able to point me to where you bought this thiamine please? thank you
 
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tim2000s

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Hi would you be able to point me to where you bought this thiamine please? thank you
Worth looking at Benfotiamine, which is a lipid absorbable version of Thiamine. This means that it is more easily absorbed by the body tissues so you don't need as high a dose of it as you do of Thiamine. Thiamine is the water soluble form.

Just be aware that Thiamine/Benfotiamine are Vitamin B1 not B12, which is also known as cobalamin
 
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Grins

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Thank you so much. Saw neurologist yesterday and he says I have small fibre neuropathy and it will only get worse over the years. It is already very painful so I am really miserable!

I am 37yrs old with 2 young kids so I am pretty worried. Have been taking ALA but no improvement so will give this Benfotiamine a go. Thank you so much for your reply.

My hba1c has always been below 6.5% although I improved it to 5.6% a year ago and maintained this and it is during this period I've had the symptoms. I have a lot of swings between high (10) and low which I am really trying to sort and I have an appt next week about getting a pump. I am hoping it is the improvement that has brought all this on and that in time it will go away, no matter what neurologist suggests!

Thanks again
 

Omnipod

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Thank you so much. Saw neurologist yesterday and he says I have small fibre neuropathy and it will only get worse over the years. It is already very painful so I am really miserable!

I am 37yrs old with 2 young kids so I am pretty worried. Have been taking ALA but no improvement so will give this Benfotiamine a go. Thank you so much for your reply.

My hba1c has always been below 6.5% although I improved it to 5.6% a year ago and maintained this and it is during this period I've had the symptoms. I have a lot of swings between high (10) and low which I am really trying to sort and I have an appt next week about getting a pump. I am hoping it is the improvement that has brought all this on and that in time it will go away, no matter what neurologist suggests!

Thanks again
Gemma....
What is your BG post prandial - an hour after and 2 hours after eating?
New research is showing that these are the most important readings and that damage is cause if they go higher than 7.7.
You may have a low HBA1C but its that past prandial reading that you need to watch.
 
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gemma6549

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Gemma....
What is your BG post prandial - an hour after and 2 hours after eating?
New research is showing that these are the most important readings and that damage is cause if they go higher than 7.7.
You may have a low HBA1C but its that past prandial reading that you need to watch.

I dont have neuropathy anymore. I had insulin neuritis which was a form of neuropathy caused by the re-introduction of insulin following 6 years of diabullimia.

I took these during that time and they helped.

I no longer have the condition or the medication.

My BG levels are always between 4-7
 
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rytham2

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sweet/sour, spices, curries, Drums. Bright lights. DVLA as I lost my license through their neglect to correct wording of help needed in a hypo attack
they didn't say emergency help. just any help. and said my wife help me. and lost the license and waiting for them to tell me whats happening so im in real stress insulin levels up and down
I just been through this and have done tons of research.
Neuropathy starts when your BS post prandial goes higher than 7.7.
My neuropathy was so bad that I could not wear shoes and I could not sleep. The dr's put me on Amytriptiline but then I could not wake up in the mornings. It left me too drowsy that I could not function 100%

I went back to the dr who sent me to a neurologist and podiatrist. They then prescribed Gabapentin. I went to collect the pills and when I got home, i started reading the leaflet. There was no way I would take take these pills. I googled them and read many reviews. I did not want to feel like my brain is numb, halucinate or appear slow.

I then was advised to read 'The antioxidant Miracle' by Lester Packer. I bought the kindle version and started reading. I read the book cover to cover in a single day and was so inspired by the stories and research that I was reading.
I went to Holland and Barret and bought Alpha Lipoic Acid and Vitamin B12, Vitamin C, D and E. Tripple Omega and Co Enzyme Q10.

I started low carbing and keeping my bloods as low as possible. I did everything to avoid a post prandial spike. Within 1 week, my neuropathy pain was gone.

I now find that if I have a bout of high blood sugar, even if it goes up to 12 after a meal, the tingling and burning comes back. The other day I had a blood sugar or 26 and the pain returned even worse.

The ONLY way to treat neuropathy is to keep you BS under 7.7 and to take alpha lipoic and vitamin B12.

In Germany all diabetic patients with neuropathy are prescribed alpha lipoic and Vit B12.

I have also been reading stories about men in particular with neuropathy. Most of them have a degree of erectile dysfunction. Some of these men started taking viagra / cialis which improved the flow of blood into the microvascular veins which inturn also seemed to improve neuropathy.

Neuropathy is a serious condition and will only get worse if you just take stuff like gabapentin and do not deal with the cause. You really have to stay below 7.7 at all times.

Hope that helps.
 
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Winnie53

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I found it interesting that not everyone with diabetic neuropathy improves on the antioxidant, alpha lipoic acid, though others experience significant improvements. Why?

In my wanderings I've come across information demonstrating that nutrients are synergistic, which means sometimes they only work when other specific nutrients are present.

For example, I've taken 400 mg calcium off and on for perhaps 30 years. A few weeks ago, I began having chest pains, something I don't often experience. I'd recently begun taking "whole foods" nutritional supplements from a reputable company, and wondered if something in the supplements was creating this new problem. A friend recommended I read the well researched and referenced book, Vitamin K-2 and the Calcium Paradox: How A Little-Known Vitamin Could Save Your Life (2012) by Kate Rheaume-Blue, N.D.

What an eye opener. The supplements I was taking had too much calcium and not enough K-2.

Turns out calcium works synergistically with vitamins A (not beta-carotene), D-3, and K-2 (not K-1). Each nutrient must be present for calcium to find it's way into our bones and teeth. Without them, some of the calcium is deposited into soft tissues such as the arteries.

For more information, go to YouTube and do a "Vitamin K-2" search; this video by Eric Berg covers the basics in less than 7 minutes but unfortunately gives a little bit of misinformation on food sources of K-2...

I've gotten much more detailed information by listening to lectures on vitamin K-2 by Chris Kresser, Chris Masterjohn, Kate Rheaume-Bleue, or John Whitcomb on YouTube, and of course Rheaume-Bleue's excellent book.

So here's a suggestion, when trying different nutritional supplements for diabetic neuropathy, consider adding a good quality multi-vitamin daily too. It might make a difference.
 

Winnie53

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It will be a while before I'll have time to read and post a review on the book, Defeat Neuropathy Now (2012) by Valerie Monteiro, D.C. and John Coppola, D.C., but I have it in hand and it has more information than Neuropathy (2014) by Philip A. Straw, a book I recently reviewed. Click here to read it... http://www.diabetes.co.uk/forum/threads/book-review-neuropathy-by-philip-a-straw-d-c.76543/

I like Dr. Straw's diet better than the one in Dr. Monteiro's and Dr. Coppola's book - (their diet is too carb rich for my diabetes) - but both diets encourage eating healthy fats which is good for those of us who have benefitted from the low carb, high fat, moderate protein (LCHF) diet.

For now, these are the nutrients listed for diabetic neuropathy in the chapter, "Nutrients To Heal Nerves" in the Defeat Neuropathy Now book...

Antioxidents
Alpha-Lipoic Acid
Vitamin C
Vitamin E
N-Acetylcysteine (NAC)
Gamma Linoleic Acid (GLA)
Acetyl-L-Carnitine (ALC)
Omega 3's
B-complex (daily)
B1, B3, B5, B6, and B12 (authors provided additional information on these B vitamins)

Dr. Straw, in his book, Neuropathy, lists these nutrients...

Alpha Lipoic Acid
N-Acetylcysteine
L-Glutamine
Selenium
Vitamin B - "Finally, stable vitamin B1 and B12 levels are essential for healthy nerves. Benfotiamine is a special form of B1 and has been shown to be effective in treating some painful nerve conditions."
 
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Winnie53

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Yes its a fact !they do regrow and are painful as they do , i know have been through it!

@Clivethedrive I really appreciate you sharing your experience. I keep forgetting to ask you...what was the range of your blood glucose levels when your nerves began to regrow? I'm still struggling to stay within the 105 mg/dL to 145 mg/dL range (5.8 mmol/L to 8.1 mmol/L range). My next effort to get my blood glucose levels lower will be fasting, but holding off on that until I'm stronger.

I know in another post you said...

The great dr r bernstein recommends bs 4.4 to 5.5 max , for every .1 over there will be neuropathy consequences.

Could you talk a bit more about your experience?
 
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mrspuddleduck

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I have proximal neuropathy, affecting my left hip, leg and foot. Initially not diabetic related it worsened considerably with my LADA onset. Done the morphine, codeine etc, refused amitryptiline. Now I'm on BuTrans patches and they have made an amazing difference! 80% reduction in pain with a completely clear head! Occasionally top it up with codeine but only on a very bad day!
Intensive physio followed by daily exercises and forcing myself to walk every day even when in pain has helped the weakness. I no longer have to use a stick.
I also have pernicious anaemia, the B12 injections also have a significant effect - they have almost eradicated that 'walking on hot coals' agony! Sue xx
 
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Winnie53

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Sue, thanks for posting about the BuTrans patches. It's exciting to hear about a treatment for neuropathy pain that works without affecting your ability to think and function. :)

It sounds like you have multiple autoimmune issues too. It's frustrating. Right now I'm reading a book with two other friends who have autoimmune issues: Brain Maker: The Power of Gut Microbes to Heal and Protect Your Brain - For Life by David Perlmutter, M.D. You can read more about it here... http://www.amazon.com/Brain-Maker-P...ie=UTF8&filterBy=addFiveStar&showViewpoints=0 I've wanted to focus on improving my gut flora for years. Hoping this book will give me all the information I need to get started. :)

Heading to my monthly diabetes support group now...
 

rowan

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I've been getting a few stabbing pains in my feet for a few years now, I was told it was nerve damage but assumed it was becasue of the pustular psoriasis I had on my soles, the skin was damaged very deeply so it made sense to me. But as the psoriasis improved and my skin started getting back to normal (thanks to my BG starting to come down earlier this year) the pains, soreness and numbness got worse, which eventually turned out to be the same time the kidney failure symptoms started, and apparently that can make it much worse.
Am have a kidney scan on Friday and will be asking about the neuropathy then, but in the meantime I just wanted to post on here so I get any updates ;)
 
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Winnie53

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Rowan, lets us know what you find out. Hope your kidney scan on Friday brings good news.
 
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Tim55

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Hi There

I originally posted this elsewhere on the forum but now think it may be more relevant here

"It was Neuropathy in my hands and feet that first sent me to the Docs almost twelve months ago.

My feet felt as though I had been playing in the snow too long, cold and numb, and I got to the stage I couldn't fasten my shirt as I couldn't feel the buttons properly.

Diagnosed diabetic, probably type 2 but feared late onset type 1.

I was told there was nothing that could be done about the neuropathy except pain killers but that controlling my BS levels should prevent it getting worse.

Fortunately, the Low carb/ high fat regime seems to be working for me - I have a meter and went through the testing procedures described on this site until I got a good idea what i can eat and what I should avoid - I had a few shocks along the way, main one being how bad my morning orange juice was!

As well as the problems in my hands and feet I have had an increasingly bad right knee for years, but recently got to the stage where it was limiting what I could do. This was attributed to mild arthritis but my Doc was a little surprised it was causing me so much trouble and I have had three steroid injections into it.

Elsewhere on this forum I came across a thread dealing with neuropathy which advocated Alpha Lypoic acid and vitamin B12 supplements as helping, provided blood sugar levels are maintained below 7.8.

About two weeks ago I spent the £15 or so on these supplements and I really do believe they are helping both with the neuropathy and my knee.

Its early days yet but I feel some encouragement and I hope others do so too."


Another week on and I am still feeling gradual improvement. I can now detect the corners on an M3 nut for example while the numbness in my feet and toes has been replaced by pain, which I am taking as a good sign.

The improvement to my knee is the most marked and i am very encouraged by progress so far so I am going to continue with it.

During this period my average BS level has been 5.65, with a max of 8.1, one reading only,and a low of 4.8

I have 44 data points, none of which are in the 7s, 9 in the 6s and the other 33 are all 5 point something.

I had an HBa1C during the period too which came in at 5.6

I'm on 2 x 500mgr Metformin twice a day and I am taking 2x 250mgr Alpha Lipoic acid, 3 x 250mgr vitamin B12 and one multi-vitamin per day. Also the occasional Sildenafil....

I sympathise with everyone out there suffering with this but I do feel Omnipods advice has helped me a lot.

Cheers

Tim