I'd like to get your opinion if you have been on something like Cymbalta (Duloxetine) and came off to do more natural methods.
I'd like to stop the Cymbalta that I've been using for years to help with the neuropathy in my feet and look at other way to see if I can control it vs using an SNRI. I've also talked to my psychologist about a taper off schedule for it.
I’ve seen posts that recommended to try a combination of B12, L-Carnitine and Benfothiamine.
They mentioned:
Over the counter B-12 2500 mg per day
L-Carnitine = 4 - 6 grams per day,
Benfothiamine at 100 - 300 mg per day.
Low end dosage for early signs, High end dosage for people that unfortunately have progressed.
Along with the Zinc and magnesium I already take.
Opinions, comments, questions and concerns welcome!
Thank You!
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Shomacco
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Hi, have you had your B12 properly checked? It may be contributory or causatory but you really if possible shouldn't supplement B12 (or B9) until tested as it could obscure the few markers that doctors might actually take notice of. Serum B12 and folate alone are not enough to rule out a deficiency but could rule one in (no test can rule out a deficiency, unfortunately). Ideally as well as full blood count markers you would want serum B12, serum folate (B9), active (holotc) B12, homocysteine, methylmalonic acid, and if possible serum gastrin, anti-intrinsic factor antibodies and anti-gastric parietal cell antibodies. Latter especially important if any autoimmunes in family, not just pernicious anaemia (B12 D autoimmune). You do not need to be anaemic, nor macrocytic (enlarged red blood cells) to have a B12 D. I'm guessing they will have already checked for low copper as you take zinc. A B6 test would also be useful. You may already know what has caused the neuropathy, but think about gluten too. Best wishes
Thank you for the info. I sent it to my PCP and Neurologist. This was the reply. )-:
from Dr
I looked back in your chart, and you have had the diagnosis at least since 2016. At the time, you had seen several specialists for this, including Dr. and the physical medicine and rehabilitation department, Dr. in the podiatry department, and Dr. from the neurology department. Your vitamin B12 has been checked several times since 2009, as has your folic acid, methylmalonic acid, copper, and vitamin B6. Your homocysteine level was checked in 2017, and anti-intrinsic factor antibodies in 2019. All of those test results came back within normal limits. If you still have questions regarding the diagnosis and whether this is caused by your diabetes or if further workup is indicated, I would reach out to your specialist, Dr. , since I do not see any abnormalities based on these findings.
from Dr.
Dr. forwarded your message to me. All of the vitamins you mentioned have been tested before and you did not have any deficiencies. You are welcome to stop Cymbalta but that is currently prescribed by psychiatry and you should double check with them.
You can try Alpha Lipoic Acid 600 mg daily. This is OTC and a nutritional supplement.
Ok interesting. I would want copies of the results of all of those tests if it were me! They should give you units and reference ranges for each item. Good that they did methylmalonic acid and homocysteine but you really need a figure esp. for the latter. If 7 or less, fine. If 10 or more, not at all fine. They are what you might call indicators of dirty burning - if the B vitamin cycle is working well and cleanly, you shouldn't get a build up of either, but there are circumstances where there are problems that don't show in this way. There are no tests to rule out a B12 deficiency, and all of those could be normal depending on where your genetic (possibly epigenetic) hiccups are. That is where I am...... And half of people with pernicious anaemia have normal intrinsic factor tests. Serum folate (they don't call the test folic acid here, that is just the prescribed or food-fortified version) can certainly be high but it not be getting into cells (my problem - and when I started to supplement with the right form the serum test result actually went down because I was using it) and as far as I know a functional deficiency of any B vitamin may show the same. As to the diabetes, what form and how bad, and is it well-controlled or can you get rid of it altogether. Did the neuros test you for small fibre neuropathy or do nerve conduction studies for large fibre or thermal threshold testing or biopsy? And did they check coeliac (another one which often misses people but worth ruling out), then you could try a GF diet and see if it helps. Gluten related disorders can cause neuropathy,not only coeliac but also NCGS. Cheers
As an experience expert in PN caused by B6 imbalance, I noticed your very high B6 levels. It may be good to mention the recommended reference values of your testing results. Usually, these values range between 30 and 60 nmol/L. If that is also the case for you, 146.3 - 406.8 nmol/L indicates a severe overdose, likely due to B6 supplements. Perhaps you were even taking multiple sources such as B complex, multivitamins, energy foods/drinks, and combinations with magnesium or other vitamins and minerals? Could you please let us know which B6 supplements you took during the period of the test results between 2017 & 2020 and at the moment?
The type of B6 in the supplements is also important. Was it the toxic pyridoxine or the probably less toxic form known as P5P?
For a better understanding of your current situation, I strongly recommend getting a new B6 test done as soon as possible!!!
I could not tell you what I was taking back then, I looked at my Amazon Orders and came up with the Country Life, Coenzyme B-Complex Vitamin, Support Energy and Metabolism, Daily Supplement. It has B6 in it.
Being tired all of the time I would also drink lots of Coffee and YerbaMate drinks.
Country Life, Coenzyme B-Complex Vitamin, Support Energy and Metabolism, Daily Supplement
Thank you for the information! In the case of PN, it is important to have all your B levels balanced, but for B6, it is even crucial. If you stopped taking B6 supplements in 2020, you are likely back to a safe level by now. However, it is still advisable to get tested for confirmation. This will also help determine your natural level and whether supplementation is still necessary, as a deficiency can be equally harmful. If supplementation is indeed needed, I would recommend a supplement that provides the daily requirement (1.4 mg) and preferably in the active P5P form.
I maintain a database of B6 test results for members of the HU community, particularly to observe the correlation between the amount of B6 supplementation. In almost all cases, a dosage exceeding 5 mg results in an overdose! In your case, it was evident even with 50 mg (P5P, in combination with potentially toxic pyridoxine at this dosage). I am very curious about your potential new test result.
I have compiled an overview of low-dose B complexes, which can be difficult to find. Here is the link:
Hi, as Esperanto says, were you supplementing at any point during this time, and if so of what. Your MMA and hcy look good at face value, folate seems ok, and intrinsic factor not unexpected, but those other B vits are not right. Your B12 has dropped considerably between 2019 and 2023 - which could be a dietary intake thing, a supplement change, a covid effect, but most likely at least in part due to the metformin, which can deplete B12, B6 as well as a link to low B2 ( academic.oup.com/jcem/artic... ). Can you get it under better control with diet? Have a look at the lovely Dr Unwin diabetes.co.uk/in-depth/dav...
Your B6 is too high, by some magnitude. If this is supplementation, it was probably the wrong form or too much, in which case stop! If not supplementation or only a very small amount, then you may have a problem using your B vitamins, which is common - lots of overhyped rubbish online about methylation and MTHFR polymorphisms so doctors generally ignore the issue and will look at you as if crazy, but combinations of polymorphisms may contribute to health problems under some circumstances. Some need more methyl groups and active forms of vitamins, some do really badly with them - upshot is take it very slowly if you decide to try. Personally it made a huge positive benefit, but I know that is not the case for everyone. (Do you by any chance work with animal feed supplemented with B vits?).
The point about pyridoxine is that it can block the availability of the active form, P5P
"Pyridoxine is converted to pyridoxal phosphate via two enzymes, pyridoxal kinase and pyridoxine 5′-phosphate oxidase. High levels of pyridoxine can inhibit these enzymes. As pyridoxal phosphate is the active form of vitamin B6 this saturation of pyridoxine could mimic a deficiency of vitamin B6."
You could try getting genetic testing, through functional meds, as you may actually need B6 to overcome a functional deficiency, but in the right form for you (small amounts and slowly!!).
I'd also see if they tested B2, and try to get the coeliac check, just in case.
Your vit D is pushing high, so I'd go easy on that if supplementing.
I've had bad neropathy in my feet for 6 years after 6 months of chemo. I was not aware there was anything I could do about it. Mine in numbness not the kind that is painful
Hi, the longer you have neuropathy the less likely that dealing with deficiencies will help the nerves repair, but never say never! The body has an amazing capacity to heal if we give it the tools, so you may get a benefit still - ascopubs.org/doi/10.1200/jc...
This study doesn't say what form of either vitamin was used, and it matters (admittedly to some of us more than others). B6 as pyridoxine (the cheaper and more common form) can cause neuropathy if you have a bit too much, whereas as P5P it shouldn't do the same. Lack of B6 can cause neuropathy too of course. I use P5P. There are 4 forms of B12 (cobalamin) - cyanocobalamin (cheapest, most stable) and hydroxocobalamin, the usual injected form in UK (both of these two forms convert in the body (in most people) to the active forms methylcobalamin and adenosylcobalamin and we need both of those. I take all three (not cyano).
I have been taking Duloxetine for8 years now but only 30 mg at night as 60mg increased my blood pressure. My peripheral neuropathy is much worse now and quite debilitating as it’s like arrows shooting into my toes and the soles of my feet. As well as Pernicious Anaemia, I am diabetic type 2 which adds to the complications.
My GP is not interested and the diabetic nurse is useless.
I am sorry I can’t help you but I certainly know how you feel and empathise.
My symptoms get worse about 2 weeks prior to my B12 injection.
How often do you get your injections? If your symptoms are returning regularly at two weeks before due, I would ask for more frequent injections (yes, I know) or self-inject, or try an oral or sublingual to top up so that you don't get that drop each time. They may not make any difference to you, but even with PA some get a benefit from something like Better You. If you are a PA Society member you could approach them, and the website has information to take to show doctor, if worth trying. Best wishes
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