Help in dealing with neuropathy

[Susikav]

Morning Folks

A brief update for you.

Back in July I started taking Alpha Lipoic Acid (ALA), benfotiamin and methyl cobolamine in an attempt to help my neuropathy.

I have previously reported encouraging results and I would now like to add to them.

I noticed a gradual improvement in feeling in my hands, but developed pain in my feet which was not pleasant but I take it as positive sign that the nerve damage is being repaired - albeit slowly. What I also noticed was a step reduction in my FBG levels.

I stopped taking ALA around the end of August - I had run out, cash was a bit tight and I had stocks of Glucosamine and omega 3 I had tried previously, so I replaced the ALA with them.

However, I began to realise that my FBG levels were rising again and I was feeling no further improvement in my feet, and my knee was getting worse. This was all very gradual and it was only when I started to really look back at the figures and in particular when I graphed a rolling 16 day average that I saw the full effect.

At the point I stopped the ALA I had 195 relevant data points, of which:

- 21 (10.8%) were between 6.0 and 6.9,

- 145 (74.4%) were 5 point something

-26 (13.3%) were in the 4s

And my 16 day rolling average was around 5.3

After several weeks without the ALA the analysis became slightly different -

I now had 246 data points, of which:

-29 (11.8%) were in the 6s

-188 (76.4%) were 5s

- 26 (10.6%) were below 5

And my rolling 16 day average was nearer 5.7

I restarted ALA instead of the Glucosamine and omega 3 on 7/10/15 and as of this morning I have 284 data points, of which:

- 30 (10.6%) are in the 6s

-214 (75.4%) are 5s

-37 (13.0%) are below 5

And my 16 day rolling average has dropped to 5.1

For those of you with a mathematical bias I should add I have 3 results above 7 - which were there from the start and I ignored, so the total %age figures will not quite add up to 100.

I also had an annual review just over a week ago and my HbA1c was down to 34 (5.3), my cholesterol is 3.4 total, of which 50% is the good stuff, my vitamin B12 levels were normal and I survived the foot examination with no problems.

Because I believe Metformin can inhibit the absorbtion of vitamin B12 I discussed with both the DN and my GP the possibility of reducing my dose from 4 x 500 daily to 3, or even 2, which both were happy with.

I am currently taking 3 and continuing to monitor my levels, but I think it is fairly clear to me at least that this regime is having beneficial effects and ,maybe addressing a more fundamental problem.

HTH

Tim

Tim, that's wonderful news!! I keep my numbers down through very low carb high fat, so I'm almost always in ketosis... I never cheat, and until I start the same regime as you I will not! My last hbA1c was 35 and my trigs were 0.35... I am very happy with myself! I started the B12, but although I ordered the other stuff from Amazon it never materialised, so I assume they were out of stock... then, of course, I had to return to the Middle East where you cannot get that stuff or have it shipped it... I can order from the States now, as my husband has a shop and ship address in New York, so I will order that way.. Are you doing three lots of 200 for the ALA? And how much Benfotiamin? The same as you advised me before? I am so glad I stumbled across you... I hope you are well - I've just realised your numbers are fasting ones - bravo, that's amazing... I struggle with them and tend to make hot chocolate with cacao, coconut oil, butter and a dollop of peanut or almond butter to go to bed on, which makes me a bit hot in the night sometimes, but keeps my FBG down a bit... I will get onto Amazon US immediately... many thanks honey... Susi....

 

[Tim55]

Hi Suzi

Thanks for the encouraging words, and sorry to hear of your supply problems.

Yes, I still take the dosage I started with, 1 capsule of each morning and evening. with my meals at the same time I take my metformin. That is 2x250mg ALA and 2x250 mg Benfotiamine. as well as 2x1000 micrograms Methyl Cobolamine rather than normal B12. I know that's a bit less ALA than Winnies reference at 500mg rather than the 600mg I think was recommended, but I felt I'd start at 500 rather than risk 750mg and it seems to be working for me. I am about 85kg at present, and around 5'10", not skinny exactly but not obese either.

I do take 1 multivitamin per day as well.

Actually, about half my numbers are fasting one as I take a fasting reading every morning and another at 18.00hrs before tea as I want some consistency to give me a chance to spot any trends. I also take occasional readings two hours after a meal I think may have been a bit "brave"... I did not differentiate between them in this analysis.

Had a shock yesterday tea time though as I got a 9.6! I washed my hands again and retested but still got 8.2 and 2 hrs after tea it reached 14 and was still 7.5 this morning. I am putting that down to the steroid injection I had in my knee yesterday morning, as I did have a similar problem on a previous occasion but I have not heard of others experiencing this.

Hope this helps and all continues to go well for you.

Tim

 

[Cap'n M]

I've looked through all postings in this thread and I see no mention of the link between statins and neuropathy.
It was the teaching that neuropathy took years to develop in Diabetes.
My experience was that I developed neuropathic symptoms within 6-9 months of starting oral diabetes therapy [which included Simvastatin].
I had been aware of the Metformin - Vit B12 problem and have taken supplements throughout.
Statins are taken for granted. They are available OTC cheaply from your local pharmacist. Physicians, including Neurologists, might label as diabetic neuropathy, what is in fact, a side-effect of their statin!
Physicians should consider, before adding a diabetic neuropathy label, whether to stop the statin. There is plenty of evidence, in lower risk subjects, that statins are not much use. Better to achieve the anti-inflammatory effect with Omega-3 supplements.
My experience, and that of others I've observed, is that statin neuropathy does not improve immediately on ceasing Rx. It might take 6-12 months. Co- enzyme Q10 probably helps.

 

[babsy2]

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.

I've been on Amitriptyline for the last 10yrs or so and Gabapentin for the last 8yrs or so I haven't experienced any major problems with either sleeping or pins & needles I was diagnosed T2 in 2009 & started Metformin in the same year cos I consider Oestoarthritis my major concern to get on top of i will say that Amitiptlyine was a bit of a ****** to get used to & with gp's advice I took them @ 6pm rather than 10.30pm for about a year till I got used to them I take 600mg Gabapentin 3 times daily no probs @all465

 

[ickihun]

I've looked through all postings in this thread and I see no mention of the link between statins and neuropathy.
It was the teaching that neuropathy took years to develop in Diabetes.
My experience was that I developed neuropathic symptoms within 6-9 months of starting oral diabetes therapy [which included Simvastatin].
I had been aware of the Metformin - Vit B12 problem and have taken supplements throughout.
Statins are taken for granted. They are available OTC cheaply from your local pharmacist. Physicians, including Neurologists, might label as diabetic neuropathy, what is in fact, a side-effect of their statin!
Physicians should consider, before adding a diabetic neuropathy label, whether to stop the statin. There is plenty of evidence, in lower risk subjects, that statins are not much use. Better to achieve the anti-inflammatory effect with Omega-3 supplements.
My experience, and that of others I've observed, is that statin neuropathy does not improve immediately on ceasing Rx. It might take 6-12 months. Co- enzyme Q10 probably helps.

I have not been diagnosed with neuropathy just my gp telling me it's a trapped nerve.
I'm hoping the foot numbness will be picked up at yearly foot check. I'll go from there.
However I must say I am on no statins. Pre lchf or on lchf.
My partner who isnt a diabetic has stopped simvastatin as he is a walking joint pain magnet and feels it's only since taking that statin. We'll see.

 

[babsy2]

Thanks every one for your input. I will consider the pros and cons of your suggestions but the main thing is that you have given me some hope as there are a range of options and some success stories.

The neurologist gave me some suggestions and some options of treatment. He was a very pragmatic and humane doctor as opposed to the ones who like giving you likelihoods etc. and being very clinical. It was his understanding of how my mood s being affected by the intensity of tingling pain I experience which didn't make me think bad about being depressed.

My control as I said is good with my Hb1As running consistently between 4.5 and 4.8. I am on metformin which dramatically improved the sugar levels alongside with exercise. I do at least an hours walking a day and having a dog who is a good walker does help. I am pretty good with my diet as I had high bad cholesterol and high triglycerides. The exercise regime also dramatically improved these too and with the medication I am on,.

Interestingly, metformin can cause malabsorbsion of vitamins and my GP checked my B12 levels and folate which were low but normal despite taking supplements. I am also on PPIs for GORD caused by a hiatus hernia and the reduction in stomach acid also causes problems with B12 absorbsion. I am not prepared for the surgery which is extremely painful, dangerous as the chest wall is invaded and cause nerve damage and only controls the reflux for a very short period of time.

I am on Omicor for the lipid problem too. This is a very high potency Omega 3 medication and is highly regarded by my consultant. The NHS though has recently stopped this as a routine treatment for certain conditions but my GP has kept me on it to keep the cholesterol at bay. I am interested in exploring the options re the other supplements.

Part of the treatment for neuropathy is tight control and my docs are saying that my control is outstanding for type 2. Despite good blood sugars between 6-8 my symptons have not gone away. I have discussed this with the docs and they say that neuropathy can occur even with good control. Vit B12 deficiency also causes nerve pain but I have never been anaemic with good HB levels so it's unlikely that I had folate defficient anaemia.

I've been on Amitriptyline for the last 10yrs or so and Gabapentin for the last 8yrs or so I haven't experienced any major problems with either sleeping or pins & needles I was diagnosed T2 in 2009 & started Metformin in the same year cos I consider Oestoarthritis my major concern to get on top of i will say that Amitiptlyine was a bit of a ****** to get used to & with gp's advice I took them @ 6pm rather than 10.30pm for about a year till I got used to them I take 600mg Gabapentin 3 times daily no probs @all465

The last reply was from me babsy2 sorry my fingers slipped I'll b more careful

 

[TEXABEY]

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

Hi ! I had similar difficulties on my right side. Blood sugar level control, Physio exercises and brisk walking for 40 minutes every morning besides some Indian Sidha Home remedies helped me reverse Proximal Neuropathy by 99%. I am not mentioning 100% because many articles in the subject say that complete reversal is not possible.
Blood test for every 2 hours from morning after getting up from bed till night before going to bed for 10 days should be done and recorded with inputs of food quantity and quality, medicines & injections, exercises done with timings. In my case, I had to change my insulin injection level after observation and analysis to counter spikes in blood sugar level in the different times of the day. Insulin Carb ratio is low in the morning and almost 2 times in the evening in my case. An in depth analysis after first 3 days will help you to reorganize your food and medicine intake. After 7 days of in depth analysis, you should be able to approximately arrive at the quantitative impact on sugar level of all the inputs including insulin, medicine, type and quantity of food and level of exercises. At the end of the 10 days, you should be able to approximately predict the sugar level with the kind and quantity of inputs only and confirm your prediction with the actual blood sugar test reading.

 

[Winnie53]

@TEXABEY Thank you for sharing your strategies and results here!

 

[robpac]

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.

Fantastic article,
Can you help me & tell me what doses you take of all 0f the above please-
Kind Regards Rob

 

[Winnie53]

@Omnipod

 

[Winnie53]

@robpac If you read through this entire thread and take notes, you'll come away with a lot of specific nutritional supplement recommendations. Welcome to the forum.

Richard K. Bernstein, found himself in a similar circumstances. Diagnosed with type 1 diabetes at age 12, he soon began developing complications. He went on to pioneer methods of tight blood glucose control and reversed his diabetic complications. Read his amazing, historic story here... http://www.diabetes-book.com/bernstein-life-with-diabetes/ This man's work alone has saved so many of us from diabetic complications, for decades.

If you've already read his book, Dr. Bernstein's Diabetes Solution (2011), I encourage you to read it again. Nothing is more motivating than the desire to reverse diabetic complications, at least that's been my experience.

He teaches a variation of the low carb high fat (LCHF) diet. This diet works very well for most diabetics, type 1 and type 2, likely you too. If you decide to take the plunge, go to the Low-carb Diet Forum here for ongoing support... http://www.diabetes.co.uk/forum/category/low-carb-diet-forum.18/

For an overview of what the low carb diet looks like in day-to-day life, I posted a series of posts on this recently... http://www.diabetes.co.uk/forum/threads/low-carb-information.101919/ I also posted on a recent break though in lowering my blood glucose levels more with digestive enzymes here... http://www.diabetes.co.uk/forum/thr...s-an-unexpected-diabetes-game-changer.101605/

The low carb diet is foundational for reversing diabetic complications. The nutritional supplements take you further. You'll receive support in doing both on the Low-carb Diet Forum here.

To this I'll only add for reversal of calcification of the arteries - (moving calcium out of the soft tissues into the bone and teeth) - the regimen I use is vitamin K2 (MK7) in combination with it's synergistic partners: vitamin A (cod liver oil), vitamin D3, and magnesium - (I take magnesium citrate). Kate Rheaume-Bleue, ND has written an excellent book on this - Vitamin K2 and the Calcium Paradox (2013). I recently learned that Thomas E. Levy, M.D. also has a book on this topic - (Death By Calcium (2013) - but I haven't read it yet. My favorite interview with Kate Rheaume-Bleue on YouTube is here...

She recommends 100 mcg vitamin K2 for every 1,000 I.U. of vitamin D3 with vitamin A (cod liver oil) and magnesium. These nutrients work together synergistically.

This recent 7 minute interview with Dr. Levy explains why you should not supplement with calcium, copper (or iron unless you have a "documented iron deficiency anemia")...

"Eating to your meter" as taught by Dr. Bernstein is foundational to learning how foods affect your blood glucose levels. In the US, the cheapest glucose meter and strips I've found is the ReliOn Prime, available at Walmart stores.

I know changing your diet likely seems impossible, but if you can trust and be frank with us as to what you're doing and not doing, we'll support you on the Low-carb Diet Forum.

For inspiration, read these testimonials... http://www.diabetes-book.com/testimonials/ You can do this!

Wishing for you good health.

 

[Winnie53]

I'm almost finished reading the testimonials that I linked to above. Here's one report of a reversal of neuropathy...

I have had long-term diabetes and was suffering from neuropathy of hands and feet, impaired gait, digestive problems and sporting an A1c of 10.8 when I discoverd Dr. Bernstein’s book in September, 1997. Following his plan of careful monitoring and reduced carbohydrates, I lost over 30 pounds, brought A1c down to 5.3 and my neuropathy, imbalance and digestive problems are all reversing. I no longer take “diabetic naps” from high sugars, and have given up oral meds, but carefully continue to fine-tune my diet. I now have the tools I need to be in control.

Rachel, Internet

 

[jar1946]

Amitriptyline and gabapentin didn't do the job for me, but the combination of duloxetine and pregabalin was amazing.

I found that the neuropathy was particularly bad should my sugars go above 8, so I did my best to always keep them below that level.

Referrals can take a long time, particularly to find the person with the right knowledge, but please don't worry you will, once seen by the right person, get some relief.

I absolutely agree with you. Duloxitine on its own made me very sleepy and Pregablin (lyrica) made me angry, I read somewhere that a doctor at a pain clinic suggested using a reduced quantity of both but together, so I take one in the morning and one in the evening. Results for the last two years have been fantastic until last month when the pain has started to return, so I am now going to increase slightly the pregablin to see if that sorts it out. I have never had a HBA1C over 7 (old measurement) in the 20 years I have had type 2

 

[Winnie53]

@jar1946 you'll find good support here to improve your overall health. Keep reading, keep posting. Welcome.

 

[Omnipod]

Fantastic article,
Can you help me & tell me what doses you take of all 0f the above please-
Kind Regards Rob

Alpha Lipoic Acid - 500mg twice a day and Vitamin B12 100 mg twice a day, Vitamin C 500mg , D - 25ug and E - 400 iu. Tripple Omega - max strength and Co Enzyme Q10 - 30 mg.

I take all with food. At breakfast and dinner.

This with keeping bloods under 7.7 at all times

 

[kiwifrank]

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.

hi there, looks like im a little late and just picked up on your post most helpful and most appreciated

 

[greycat001]

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.

 

[Winnie53]

@greycat001, gemma6549 corrected herself after than post. She actually took a form of vitamin B-1 not B-12. I can't right now, but I will find the "correction" post and repost it here. I can't do it until late tonight my time though.

 

[Winnie53]

@greycat001 this information is for you - (found on page 3, posts #45 and #46)...

tim2000s wrote...

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

Then gemma6549 replied...

That's the one I'm talking about as it's the absorbable version that you want.

 

[Winnie53]

This is interesting...

Post-Marketing Surveillance of Fixed Dose Combination of Methylcobalamin, Alpha Lipoic Acid, Folic Acid, Biotin, Benfotiamine & Vitamin B6-Nutripathy for the Management of Peripheral Neuropathy, Vol.4 No.2, May 2014

http://www.scirp.org/journal/PaperInformation.aspx?PaperID=46105

ABSTRACT

Background: Peripheral neuropathy is a commonly encountered troublesome condition which is often disabling & worsens when left untreated. Traditional neuropathic pain medications primarily provide symptomatic relief; however, the pathogenesis of nerve damage remains unresolved. Extensive literature survey reveals that patients with peripheral neuropathy experience significant benefits with the use of B-vitamins like methylcobalamin (B12), folic acid (B9), biotin (B7), benfotiamine (B1) and pyridoxine (B6). The other well documented antineuropathic agents include alpha lipoic acid, glutathione, omega fatty acids, myoinositol, certain trace elements, etc.Materials and Methods: A multicentre, prospective, open-label, non-comparative clinical study was carried out in 497 patients with peripheral neuropathy. A fixed dose combination of methylcobalamin, alpha lipoic acid (ALA), folic acid, biotin, benfotiamine & vitamin B6 capsule was orally administered once daily for 12 weeks.Results: Treatment led to significant reduction from baseline score in various neuropathy symptoms from the 4th week itself. After 12 weeks of treatment, the mean pain score declined by 78.0%, numbness by 92.1% and muscle weakness by 96.9%. Also, there was 96.0% & 99.2% reduction in tingling & burning sensation respectively. No serious adverse events were reported.Conclusion: The current study confirms that fixed dose combination of methylcobalamin, ALA, folic acid, biotin, benfotiamine & vitamin B6 is effective & well tolerated in the management of peripheral neuropathy.

The full study can be downloaded in PDF format.