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Neuropathy

Alison556

Member
Messages
20
Hi everyone,

I hope you are all well.

A while ago, I read a link to an article on treatments of peripheral neuropathy. It involved supplements, one of the B vitamins I believe and a couple of other things, but for the life of me, I can't find the link.

Can anyone help point me in the right direction?

It's actually for my gran, who has type 2 diabetes. She had been prescribed Gabapentin but it made her extremely dizzy and fuzzy headed and she's not keen to take any more drugs (she's got multiple conditions and has to take a lorry load of pills every day) so I was hoping to find an alternative treatment for her.

Thanks in advance.

Alison
 
I don't know the link, but the supplement is possibly Benfotiamine, which is like thiamine. An old-fashioned supplement, is brewers yeast, which is B vitamin rich
 
Hi Alison.Do you know if your gran is on the lowest dose of gabapentin? It is a helpful drug but can have side effects if taken at too big a dose to start with.
 
Benfotiamine - that's the stuff!!! Thank you. It's been driving me mad trying to remember it.

She was started on a very low dose Gabapentin and it didn't do anything, so the doc increased it and she was in a right old state with it - she just didn't like the feeliings she was getting with it and it still didn't do much for the pain.

Mind you, the worst pain was in her left hip and she had been prescribed Risonodrate (she's on long term steroid therapy too) for her bones. She stopped taking that and the bad pain in her hip subsided a bit but she's got pains in her feet and constant pins and needles in her arms and hands and she's not too keen to take any more drugs from the doc because there seems to be more side effects than anything else. She was at the Pain Management Clinic on Friday and the doc there was lovely. He's suggesting a couple of alternatives to the GP but he understands that she's not wanting to take any more pills. She's also got really blurred vision but we're not getting very far when she goes to see the diabetic nurse at our surgery. When I do her blood sugars, they are up and down like a yo-yo through the day/week, but the nurse does her HbA1c and says it's fine (I can't remember exactly what her last one was 9 or 10 rings a bell). Maybe I'm looking at it wrongly, but if her blood sugars varying hugely, going from low to high, would it not work itself out to look OK on an average?

That's why I was trying to remember that Benfotiamine.
 
Yea an average value tells you nothing about the variation. there is a theory that too much swinging up and down is as bad a a consistent high.
Benfotiamine isn't hard to get. I have it and my T2 husband now takes it and we're hoping it's the reason his kidneys are improving slowly. He's only been taking it a couple of weekws and htere's a discernable improvement in blood tests. that combined with reduced carbs seems to work for him
 
Hi Alison
Sorry to hear that your gran is not so well.

I think you should ask for a full review of her medication, does she see a diabetologist? A Hb1ac of 9 or 10 is most definitely not alright, she needs help to have more stable blood sugars, not the yo yo effects that you say she is currently having, what is her diet like? First thing she needs to do is get her bg lower and nice and stable, how often does she test during the day?

If your gran is on lots of medications she may have some vitamin/mineral deficiencies, sometimes diabetes prevents some vits/mins being absorbed by the body, some medications can cause this too and such deficiencies can be the cause of neuropathy as well.

Check with her medics if she is allowed to take fish oils, flaxseed oil, etc, does she eat almonds and walnuts ? These can help with neuropathy and the bone pain/inflammation, she could try to soak her feet/legs in warm water with epsom salts added, this would help her body absorb magnesium, lack of magnesium can be another cause of neuropathy. ,(if maybe she finds nuts difficult to chew, I know another diabetic who grinds the nuts and stirs them into a plain greek yoghurt with a spoon of cinnamon and a bit of sweetener)

So you see it is unfortunately not as simple as taking a benfotiamine supplement, although this is recommended for neuropathy, another recommended supplement is Alpha Lipoic Acid.

All the best

Karen
 
hanadr said:
Yea an average value tells you nothing about the variation. there is a theory that too much swinging up and down is as bad a a consistent high.
Benfotiamine isn't hard to get. I have it and my T2 husband now takes it and we're hoping it's the reason his kidneys are improving slowly. He's only been taking it a couple of weekws and htere's a discernable improvement in blood tests. that combined with reduced carbs seems to work for him

That's what I thought, but they only seem to be interested in her HbA1c.

Can I ask where you get the Benfotiamine and what dose you take?


ChocFish said:
I think you should ask for a full review of her medication, does she see a diabetologist? A Hb1ac of 9 or 10 is most definitely not alright, she needs help to have more stable blood sugars, not the yo yo effects that you say she is currently having, what is her diet like? First thing she needs to do is get her bg lower and nice and stable, how often does she test during the day?

She goes to the hospital diabetes clinic once a year and is meant to see the diabetic nurse at the GPs surgery every 3 or 6 months (I can't actually remember cos they're not very good at sending for her). I took her to see the nurse before her time because I was concerned about her blood sugars. She did her HbA1c and said that it was fine and not to worry about her daily blood sugars.

Her diet is actually quite good. She eats porridge for breakfast, soup for lunch and usually white meat or fish and veggies for dinner. She eats fruit too, but not in excess. She does have a wee bit of a passion for Tomato Ketchup crisps though!! She doesn't use sugar at all.

I only test her two or three times a week cos the doctor/nurse said that was all I needed to do (she is tablet controlled) but if she's feeling unwell, I will check her blood sugars.

She takes Diamicron MR 30mg once per day (it's the slow release version of Gliclazide). Just as an example, some of the random readings have been:

Before breakfast anything between 5.8 and 8.7
After breakfast anything between 9.1 and 16.3 (she was feeling quite unwell at the high readings)
Before lunch anything between 6.3 and 12.9
After lunch anything between 12.6 and 14.4
Before dinner anything between 7.0 and 16.4
Bedtime anything between 9.0 and 15.6

She was originally on 20mg Gliclazide first thing in the morning and then just before dinner and her bedtime readings were better then, but they changed her over to the one a day version for easiness I think (though she's not bad at remembering pills - I make them up in one of these pill towers for her).

The only time she's ever had decent readings before dinner (around the 7 mark) is when she's missed lunch.

She often takes turns that I would say are hypos - sweaty, shaking, clammy, grey looking and feeling quite disorientated - I always carry something sweet just in case and on these occassions, I'll give her something and she does feel better after it. Normally we're out, so I started carrying her testing kit to check it and found that her sugars aren't actually low - they've been around about the 11 mark. What I found strange is that she felt unwell, I checked her sugars, they were 11.2. I gave her a sweet and checked them half an hour later - 11.1. I checked them an hour later and they were 9.1 - I don't understand why her sugars would drop after eating a sweet.

If your gran is on lots of medications she may have some vitamin/mineral deficiencies, sometimes diabetes prevents some vits/mins being absorbed by the body, some medications can cause this too and such deficiencies can be the cause of neuropathy as well.

She takes Prednisolone, Azathioprine, Warfarin, Digoxin, Simvastatin, Omeprazole, Frusemide as well as garlic capsules, cod liver oil and evening primrose oil. I am aware that some of her meds upset others and it's a vicious circle of knowing what's doing what to her. I don't know if any of these affect vitamin absorption. She gets her blood checked once a month because of the Azathioprine, but it's only FBC, Liver and kidney function she gets done. I wouldn't hold out much hope of our surgery actually telling her if anything was amiss anyway - apparently she had 8 months worth of blood tests where her blood sugars were consistently very very high but nobody actually thought of bringing it up. It was only cos I had an idea that the symptoms she had were diabetes symptoms that I took her to the doc and actually asked for her blood sugars to be checked that they found out that she was diabetic.

Check with her medics if she is allowed to take fish oils, flaxseed oil, etc, does she eat almonds and walnuts ? These can help with neuropathy and the bone pain/inflammation, she could try to soak her feet/legs in warm water with epsom salts added, this would help her body absorb magnesium, lack of magnesium can be another cause of neuropathy. ,(if maybe she finds nuts difficult to chew, I know another diabetic who grinds the nuts and stirs them into a plain greek yoghurt with a spoon of cinnamon and a bit of sweetener)

She takes cod liver oil and evening primrose oil as it is just now. Nuts she has to keep away from because she has ulcerative colitis and nuts can flare it up. Will try the epsom salts trick though - she is meant to take calcium supplements because of the steroids but she keeps "forgetting" them cos they're horrible tablets, but I know that calcium/magnesium work on a see-saw type basis that if one is high the other is normally low, so we'll go with the magnesium soaks to see if that helps.

I'll mention the nuts to her though - maybe if they were ground up, they'd be OK for her to take - I think it's the process of actually trying to digest big bits of nut that can irritate colitis.

I really do need to learn more about diabetes so that I can be more informed when we go to the doctor. I hate being fobbed off and I know for definite that something isn't right with her meds but of course, one specialist won't take anything to do with another specialist area, so you can't even get them all to agree on treatment.

Thank you all for your help so far - I'll be asking loads more questions.
 
Alison, get hold of Dr Bernstein The Diabetes Solution, its a really good book and will really help you to understand whats going on there with diabetes.

If I were you/your gran I would ask for a complete review, preferably by a diabetologist, also ask the chemist for advice on medication and interactions and possible vit/min deficiencies as a result of meds.

But I really do think that if her bg's are lower and stable the neuropathy would improve too.

All the best

Karen
 
Hi Alison

You need Vitamin A, B and E and Methycobal tablets - 3 per day - as well as daily exercise the feet and hands 20 mins. If your granny is overweight she needs to loose weight - without loosing weight it will be difficult to kill the neuropathy. Is your grannys sugar readings low? This also must be.

It took me 6 months to get rid of my Neuropathy using this way.

Good luck

KIM
 
Be careful taking too many different supplements! Vit A and D accumulate in the fat of the body and you can overdose! Always check what is in these supplements.
 
Thanks everyone. I've got her taking Alpha Lipoic Acid at the moment. I've not ordered the Benfotiamine yet and she says to give it another week to see how she goes with the ALA.

She's only a little bit overweight but her blood sugars aren't always very good - the doctor says that he'd rather leave them on the high side than risk her having a hypo by increasing her meds!!!!!
 
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