I last wrote a post about 11 months ago in which I was exploring the use of oral B12 while waiting for a specialist appointment. A lot has happened since then and I have waited to reach a conclusion before posting an update. I have decided to summarise my findings rather than ramble on:
1. I found the oral B12 spray useful to a point. After about 2 months I noted no more improvement and decided to try B12 injections
2. I bought methylcobalamin in the UK and noted an immediate improvement to my legs, bowel movements, eyes. I also got hold of cyanocobalamin and hydroxocobalamin. All three forms were beneficial and I injected every 2 days for three months. After that, I noted no further improvement and reduced the frequency to weekly, then monthly.
3. My original appointment with the peripheral nerve department at King’s College Hospital was cancelled. I had to fight hard to get another appointment for 1st December 2021.
4. I met with Dr X from KCH and he carried out a thorough set of tests. He confirmed that I had severe peripheral neuropathy affecting both my legs. I was relieved to finally have a diagnosis that had been missed by the hospital neurologist and my GPs. However, he did not think this degeneration was linked to my diabetes as the ‘phenotype’ was wrong. He then said that he did not think that it was linked to B12 either. I asked him why I had noted an improvement while taking the B12. His response was that it was likely a placebo effect. I can hear so many sighs from here!
5. Devastating as his dismissal of B12 was, he sent me for further EMG tests at my local hospital. There, the consultant showed me that demyelination was not the cause of the peripheral nerve deterioration. That confirmed Dr X's view that B12 was not the likely route. Instead, the consultant said I had Axionic degeneration. This was the first time I had a medical diagnosis and a possible route to research further.
6. In January, my wife challenged me to look again at my use of statins. I was prescribed Simvastatin about 15 years ago as part of the NHS drive to target cholesterol. I had argued with my then GP about not wanting to go on statins but he was adamant that I was at high risk of heart attack because of my diabetes. I trusted his professional judgement. More fool me.
7. My research led me to a paper written by six neurologists in 1995. There, they found that simvastatin was implicated in Axionic Degeneration of nerves. This was a rare side-effect but a known issue nonetheless. A further paper by a senior Podiatrist signalled that the medical profession might face legal liability for ignoring this fact. There was clearly a political dimension to the known problem.
6. I contacted my GP whose main concern was that my B12 levels were at 1500 and that I stop all injections. I agreed and insisted that I also stop taking Simvastatin citing my diagnosis and findings. Reluctantly, he agreed.
7. I have now not been taking Simvastatin for two months and have noticed a definite improvement in my legs and bowels. It is interesting how the symptoms of low B12 are so similar to those of Simvastatin use. Disappointed as I was in B12 not being the prime cause, I am glad to have found relief for my symptoms
8. My last point is an observation that many on this forum have expressed before. That the medical profession has been politicised to the point of gaslighting us into believing that any improvement we may have noted to our symptoms must he psychosomatic. I pushed back against Dr X, as a senior psychotherapist, saying that the improvements I had noted while on B12 were real and evidenced in my diary; that there may have been an underlying B12 deficiency that was not the main cause of my neuropathy, yet needed rectifying. While I appreciated his thoroughness, I have experienced a groupthink denial of B12 amongst many in the medical profession. The groupthink in my case was not only to dismiss B12, but to assume that my peripheral neuropathy was because of my diabetes. I am glad that Dr X exposed that prejudice. Nevertheless, such prejudices amongst so many, have made my journey, and doubtless the journey of so many of us, needlessly arduous.
I wish everyone up here well as you discover what works for you and your symptoms.
Admin note: edited to remove name of medical professional
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Pleaforsanity
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Thank you so much for your post. . You have done us a great service by taking so much trouble to inform us about your findings .It really shows us that we have to look out for our own health now . Forums like ours are really helpful . Thanks again .
Thank you. This forum has been my saviour. Without it, I don't think I could have anticipated the blinkered view of the medical experts. It is remarkable how much groupthink dominates so many establishments and people who think for themselves are regarded as a nuisance.
Great post and big thank you and I hope you continue in your mission to stay well,we are all just trying our best to get to the bottom of our symptoms no one can fault us for wanting to be well as we can be,just a shame we get no support or encouragement from the so called people in the know.take care and well done x
Thanks. I credit this forum for keeping my spirits up and encouraging me to get to the bottom of my condition. The GPs and secondary care were not interested because they believed it was all to do with my diabetes and stopped looking at other possibilities.
Thank you. As regards the B12, I continue to use the oral spray and high dose tablets. I know it dropped to 130 initially so haven't completely ignored its level. I'm not needing to inject regularly but keep to every 2-3 months.
To be quite honest the fact you did your own research has led to improvements. doctors throw so many prescriptions at people without a clue of the consequences. I am glad you have been your own doctor in finding what's caused all the problems you have. AndYou have proved B12 helps !
Thank god we have the internet and investigate for ourselves.
I believe we need to wake up to the reality of what the medical profession has become and do our own research. Gone are the days when we 'trusted the experts'. Instead, we need to become proactive and become experts in our own health.
I believe the NHS are too concerned about cholesterol and dish out statins which can do more harm than good. We all need cholesterol for healthy nerve function.....
My personal opinion only is that too many doctors concentrate on conditions ie cholesterol and diabetes when in fact things like low b12 folic acid etc all contribute to both.
Also there is the problem of money.... not the lack of it..... but the fact doctors are paid more for certain illnesses so tend pay more attention to that!
I believe you are right. Doctors receive financial rewards for meeting certain targets such as lowering cholesterol. This encourages an approach that sometimes prioritises finance over health. Individual human symptoms are often set aside in favour of evidence-based or academic- medicine.
Sometimes out of curiosity I go back and read the original postings people post, and discovered our communication at that time. It is also good to read how far you have come !
I’ve always wondered whether a patient’s arteries should be checked prior to being prescribed statins. If a (cheap) ultrasound scan reports that there’s no sign of arterial damage, then it might be worth following Oxford University’s advice that an apple a day keeps the heart doctor away:
Interesting. I travelled to Germany in 2009 and self-funded a stem cell operation to address my diabetes. This involved a procedure that explored my arteries from the inside. The doctor who carried out the procedure said my arteries were the cleanest he had ever seen. When I told my GP back in England he said "that's because of the statins you're taking." I wish I hadn't listened to his opinion and stuck to my guns. I consider it a good example of gaslighting.
I wrote about Gaslighting last year: "This is used to manipulate the situation to make the other person feel they cannot trust their reality and are going mad. This is a technique often employed by the married spouse, who has been caught cheating. Through denial and deceit, they succeed in getting the other to question their own sanity. Based on the film of that name, it involves a man trying to persuade his wife that she is going mad, by manipulating the gas lights."
Dr Kendrick , practising British GP opens a can of worms, quite literally when he reveals in his book 'Doctoring Data' that GPs/and or their practice's receive QOF payments from the Government for every patient who is prescribed for the first time a prescription drug. You wouldn't believe the length of the list of conditions eligible for such payments. Just Google QOF payments (no u after the q, many fail at that hurdle if they just hear the term)
Thanks for your in-depth analysis of your illnesses I also have similar b12 pherphal neuropathy diabetes and I’m also on statins I will cease these today to see if there is any improvement in my feet and legs
I'd be very happy if your neuropathy were resolved but do talk to your doctor as there may be risks with not taking the statin. My doctor said I may be at increased risk of a heart attack but it's a risk I'm willing to take to stop the neuropathy and possibly reverse it.The article I referred to specifically referenced Simvastatin, although other statins may have been implicated. Also, the EMG test revealed axionic degeneration not demyelination. This last bit of info indicated another etiology other than B12. There are several references when you carry out a google search. The one that stood out for me was:
'Peripheral Neuropathy associated with simvastatin'. Journal of Neurology, Neurosurgery and Psychiatry, 1995, 58: 625-628Authored by Phan, McLeod, Pollard, Peiris, Rohan & Halpern
I hope you find an answer that addresses your symptoms.
Oh my goodness, I was put on 40mg of Simvastatin over 10 years ago. I did ask my GP if I could come off them a few years ago, after reading other evidence about it but he just ignored me. Thank you so much for posting this and I'm so happy for you that you found an answer.
I spoke to a health professional yesterday and he voiced his concerns that people are often put on medication, and then forgotten - the side effects which are then ignored. In the myopic drive for reducing cholesterol, statins may be a hidden culprit that's worth investigating.
I was also diagnosed with diabetes a few years after starting the stations but my research shows that statins can raise blood sugar. So I'm on statins and Metformin and also meds for high blood pressure. My BMI is 21 and I run regularly, eat healthily and don't really drink so I'm wondering if it's all linked.
Thank you. I waited until I had gathered myself after the initial disappointment of it being more than my B12. Being told it was psychosomatic could have called me to question myself. That's something I do as a matter of course as a psychotherapist. However, psychosomatic often means that the professionals don't know why and how something works. It should not mean that the improvements are not real and it's all in our heads
Take a look at the relation between Metformin and B12, my husband has been on Metformin for many years but I recently saw on his analysis that his B12 was at the very minimum level, (not commented by his doctor), he now takes a supplement.
Many thanks. I have researched this thoroughly as low B12 because of metformin use was the reason I joined this forum. Unfortunately there is no viable alternative to metformin. I wear a Freestyle Libre and my glucose levels shoot up if I fail to take metformin with the insulin.
Glad you’ve found the answer to your neuro symptoms. My cholesterol is high & statins have been mentioned but I’m not interested so taking Q10 & hoping it helps, it went down but back up. I’m aware of the side effects of them. I think my nerve damage is no B12 for years.
Thanks. I'm glad you found it was B12. I thought so too but was surprised to find that whereas my B12 was low, I also needed to address the simvastatin
I’ve just read that paper. If you don’t mind me asking you, was it years before the nerve damage showed up on the statins or has it been gradual over 15 years? Thanks I need a lot of B12 but legs are rubbish. X
I became aware that my balance was becoming an issue in 2014. Given I was diagnosed as diabetic in 1998, it took over 15 years for it to show up. When it was, I was reassured it was diabetic neuropathy and that was that. I was sent to a neurologist who carried out an MRI and was relieved it wasn't a brain tumour. He didn't diagnose what my problem was. I was sent to the physio as a last resort but that didn't help much. No one mentioned peripheral neuropathy or B12 or statins. I've had to work really hard to get heard and for my symptoms to be taken seriously. I believe that doctors are so often myopically focused on health targets that they fail to diagnose people based on symptoms.
Very well-done post. I personally believe in the validity of your observations and inferences regarding B12. There is enough believe in the efficacy of B12 to potentially repair damaged nerves that many studies have investigated repair of nerves, mitigation of damage, etc , in diabetic neuropathy and ALS. To search the research databases, go to scholar.google.com and enter search terms.
Thank you. Yet the medical profession remains largely ignorant of the effects of low B12. Doctors only seem to get concerned when the levels are too high - whatever that is!
When I searched online using terms "B12 deficiency axonal degeneration" I found research articles that suggested B12 deficiency can lead to axonal degeneration in nerves as well as demyelination.
That's very interesting. I found the symptoms of low B12 are very similar to those of Simvastatin side effects. There may yet be a mechanism that implicates both in peripheral neuropathy. The EMG doctor was clear that it's not the myelin sheath that's the problem. As to B12 being implicated in axonal degeneration, I will need to do more research. The consultant at KCH was clear that my symptoms don't match his experience of B12 induced peripheral neuropathy. His report says, "B12 deficiency would certainly not cause the type of neuropathy that I am seeing on examination today."
May I point you in the direction of Dr Malcolm Kendrick (a British GP) a cardiovascular expert and lifetime researcher of what is the likely cause of heart disease. His book, ' The Clot Thickens' is very recently published and available on amazon. I purchased only a few days ago so have not had time yet to start, but I have read his other 2 books published over the years and would certainly reccommend. He certainly has a case against statin treatment and the age old cholesterol causes heart dusease hypothesis
I only mention this because you state that your GP was concerned about your heart and therefore suggested the need for a statin prescription.
I believe that to be as informed as possible is our only route to empowerment. Dr Kendrick now works as a GP with the elderly trying to get them off their carrier bag full of prescription meds and is somewhat an outcast from the mainstream profession because of his stance against their non thinking and non challenging role in medicine today.
Thanks for the recommendation and I shall get hold of the book. My wife may already have it as she believes we may have been told an untruth about cholesterol, much as we were once told the untruth that eating fat makes you fat. As a sceptical scientist, I am open to new ways of looking at things. Also, as someone who has worked as a psychotherapist with GPs since 1992, I know just how passive and non-thinking their stance is today. They are simply expected to follow the groupthink and not to challenge the orthodoxy. That's why I believe we must all wake up from the stupor and become experts in our own bodies. Tough though that is, it's why this forum exists - to help educate and inform us so that we address our symptoms even when the medical profession is stuck in the dark ages.
I'm used to voices that challenge the mainstream orthodoxy. As a psychotherapist, I'm atypical and wrote a book last year that challenges a lot of postmodern dogma.
He says so himself. But is still working as a GP for the NHS and worked so hard in Nursing homes visiting elderly patients during covid. Support from many colleagues -- see the Public Health Collaboration. Lots of their annual UK conference speakers presentation's on you tube. There is hope
Hi Pleafor sanity, So pleased that you may get his book or read your wife's copy if she has. Published Nov 2021
Have you come across the Public Health Collaboration ? Please Google. They have lots of resources. They hold a conference every year in the UK with past speakers presentations available free online from their website and you tube. However it used to be in the autumn this year I see it is in May - held in Bristol.
The Public Health Collaboration was formed by like minded British GPs , scientists, other health professionals and the general public who basically feel that lifestyle medicine should be paramount and not pharma prescription pushing.
Dr David Unwin GP in Liverpool is a key figure keeping his type 2 diabetic patients off meds with a low carb diet. With over 7 years of success so not new to the principles.
I appreciate that the world is swamped in refined polyunsaturated oil for consumption which I am sure you know creates oxidisation and free radical damage within the body.
But one thing I was shocked to hear was that it takes 2 full years of cutting such oils completely from our diet, replacing with saturated fat and healthy cold monounsaturated oil to return our weak, compromised cell walls back to healthy walls with strength and integrity. The body has to use what it is given to build with. If it is only fed damaging polyunsaturated oils to rebuild with then crucially requiring fat for the cell it will grab on to whatever it can. 2 years ! 2 years and healthy service will be resumed! Makes you think.
Thanks. The doctors seem to have taken an anti B12 stance for reasons that remain unclear to me. Is there a financial target involved I wonder, since I've never seen them take such rapid and immediate action (such as phoning me and insisting on a B12 test) when it comes to other blood abnormalities?
Certainly for GP I think a lot of their actions are monetised, but I am only guessing. They also seem to have funny ideas about what "normal" levels of B12 are. I think they are specific to the patient. In my case fortunately I had some baseline figures from before I got I'll with Leukaemia.
One thing I may have learned recently is that the methyl sublingual versions are somewhat unstable, so be careful the stuff you are taking is still fresh and good. I knew that issue in theory but it hadn't really sunk in. Cyano versions much more stable but the dose may be insufficient for some.
We do need proper testing though on a regular basis.
Another point is that GP (and some other bits of the health service) seem to think minimal levels of physical functionality in a patient are acceptable. I guess though you have to look at it from their perspective where they have never lived in a normal world, and done a physically difficult job, if I can put it like that. Hard to explain well. It isn't true of all doctors though, there are some superb ones out there.
I would be careful about overdosing on the stuff.
P.S. the Thyroid UK group on healthunlocked is very good at B12 and lots of other stuff. Worth joining. I'm a Leukaemia patient myself.
Thank you for your info. Very interesting!! I do hope you are picking up now?!! I blame b12 for how I feel.. I have all the b12 symptoms (& paenicious anaemia ran in my family)... So I was very interested in your message.
Thank you. I do believe that low B12 played a part in my condition but that simvastatin's role in peripheral neuropathy was a known side effect that should have been recognised by the doctors and hospital neurologist.
Statin prescriptions net Drs a financial dividend as per meeting national health targets re reducing cholesterol. It is difficult to find the truth about statins when such financial incentives exist.
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