B12 deficiency and neuropathy - Pernicious Anaemi...

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B12 deficiency and neuropathy

Pleaforsanity profile image
Pleaforsanity

Hi, I'm a retired psychotherapist and was diagnosed with diabetes type 2 twenty two years ago. I'm concerned about the side effects of metformin especially since it affects B12 absorption which has led to my neuropathy. I now have balance issues which I believe is down to my nerve damage in both legs. I've read a lot of posts on the forum and hope to contribute my expertise as well as receive your wisdom. My original degrees are in biology and chemistry so I have read and made sense of a lot of academic research on specific topics. Nothing substitutes however for real human experiences.

101 Replies

Yes Metformin blocks absorption of B12 . So I assume that you are having B12 injections which get around this problem , if you continue to take Metformin . . If caught early enough , that neuropathy can be reversed .

Thanks for replying. My B12 level was 132 last August and I had the 6 B12 injections followed by the first booster 3 months later. These injections improved my legs and health in general. However, I've felt much worse since the second booster 6 weeks ago. My balance is so bad I struggle to walk outside even with a walking stick. I've got a telephone appointment with my GP tomorrow and am likely to ask for a referral to the specialist peripheral neuropathy dept at Kings College Hospital.

I went to a specialist at KCH (well, the National hospital for Neurology and Neurosurgery). The guy I saw was excellent.

That's reassuring. I believe Dr Rob Hadden is the main consultant. So far, I've only spoken to his secretary, who seemed very knowledgeable and told me to get the GP to refer me.

Opps, I remembered it wrong. My referral was to University College Hospital, London. It's KCH that do my NET stuff.

Hello I'm sure you will gave plenty to contribute . I had balance issues but with enough b12 this had mostly resolved.

There are so many b12 deficiency symptoms .

How far are you into b12 treatment ?

Thanks for replying. Did the neuropathy affect your balance and being able to walk safely outside?

Sorry, I forget to add that I started the 6 B12 injections last August. My second booster was six weeks ago but I have felt much worse and my balance has deteriorated even though I was much better after the first booster in December 2020.

My first symptoms were vertigo and unable to walk. Sounds like your ladt b12 has stirred everything up. How were you just before the injections?

I did get worses before better. J never did get to the 3 month wait after loading doses.

Good to get a referral to rule things out.

There is alot of reasons for similar problems.

I was told by last neurologist to keep my b12 levels up.

After I'd had scans to rule our other reasons.

Make sure folate, vitamin d, iron, ferritin, thyroid get tested .

I hope you make improvements soon

Many thanks for your encouragement. I hadn't connected this to vertigo which I do suffer from. That's very helpful, thank you. Before the injections, my balance and walking were worsening but nothing like now. After the first six injections, I had a new lease of life and that improved after the first booster. Now, my balance and coordination are very poor as are my reflexes. I have to concentrate very hard when walking and the slightest unexpected noise or interference and I lose my balance altogether.6 years ago I was referred to the hospital neurologist who ran an MRI scan and I had extensive hearing tests. All were negative and he was relieved that I didn't have a brain tumour - interesting reaction, since the thought never crossed my mind! He referred me to a physio which had a little improvement but not much. The neurologist didn't mention B12 at all.

Same really. It was the third neurologist who happened to be b12 deficient himself! I went to him for migraines which started after virtigo. I've had 2 brain mri scans second one included upper cervical. I wax hoping for full spine.

Yes I had a ct scan in a and e thst ruled out a tumour . They decided I was having an anxiety attack. Aksi thought I wax on something as my pupils were dilated in a lit room. !

This was before b12 was tested.

Cawthorne pydio wax good yo get my balance for walking .

Some on the forum have given their story so far on their profile.

You click on their icon.

It's quite useful at times to pick bits out that might help you.

Aksi it took me ages to find and uses the search

You may be more up on I t but I always mention it just incase

Sounds like you were lucky to find a neurologist who understood B12. I shall use your experience to convince my GP to make the referral to KCH tomorrow.

Well he'd only read about it as a personal interest . He couldnr cope on the NHS regime either ! I went to him for migraines so by chance really . I'd seen one NHS one who told me I was addicted to b12 . I was so taken aback wad speechless as had waited over 12 weeks to see him.

3rd time lucky perhaps

Unfortunately it's been posted on his site that his clinics gave been closed due to serious illness !

"Addicted to B12" that's a new one for sure!

I have had that one too - Addicted to B12😱 Really! I don’t know where they find some of these Doctors.

King City Hospital in California? And if were on same page, why not Stanford, I too have Really bad small fiber Poly Neuropathy caused by severe Thiamine B1 defiency Mostly always seen in alcoholics which I never drink. I have been in bad shape for 8 yrs now and I just turned 37 yrs old. My life has been a nightmare and had give up my nursing career. Im beyond mad and feel so failed by our medical system

Sorry no, it's King's College Hospital in London, England. I believe we're not as knowledgeable about many medical matters over here, as I often read books and articles from the US which the medics here have never heard of.

shal61 profile image
shal61 in reply to Pleaforsanity

Hi I took 2 types of metformin it has side effects of vertigo , check it out with the diabetic nurse

Pleaforsanity profile image
Pleaforsanity in reply to shal61

The metformin I take is the prolonged-release version, which I understand has been withdrawn in certain areas due to concerns over its potential carcinogenic properties.

Oooh! I have a couple of questions you might be able to help with.

What do you think is the mechanism for nerve damage caused by a B12 deficiency. I've read that it is because of a problem with DNA synthesis if there is a B12d. But that means the nerve damage would be fixed by supplementation with folate (just as macrocytic anaemia can be fixed with folate supplements). However, we are told that supplementation with folate while deficient in B12 can exacerbate the nerve damage.

What are the difference in neuropathy caused by a B12d and T2 diabetes? I think I've read that when caused by T2D it's a vascular problem.

Wow, what good questions. I have understood that B12 is needed for myelin sheath formation and maintenance. It's damage to the sheath that leads to the nerves not firing as they should. I haven't made any connection to DNA synthesis. In cell regeneration and reproduction, DNA needs to be duplicated and there may be a problem with that replication in the absence of sufficient B12 but I have not across such a mechanism.As to the B9 and B12 interplay, that is something I'm looking into, also the effects of low Iron.

The difference in neuropathy caused by B12 deficiency compared to Diabetes type 2 is one I'm hoping a referral to the specialist dept at KCH will sort out.

Is you cholesteral low, read that you need a good amount of cholesteral for repair of nerves.Nerves are covered in fatty substance to protect them from misfiring.

I'm on a statin for cholesterol so it is low. I have had many arguments with my GP about statins since he is obsessed with cholesterol and is rigid in his thinking. Unfortunately, he's the diabetic expert at my practice. I'm willing to try a different GP but first, I need expert advice from KCH to back my stance.

My cholesteral is low, and I was in a lot of pain all over. Mainly nerve pain. I was not on medication at all, and have serious problems with oils, only able to have olive oil as other oil plays with my indigestion.Last year in the daily mail there was a piece on how we need good cholesteral to maintain a healthy nerve function, and that nerves are covered with a fatty substance.

I have altered my diet slightly to raise my cholesteral and now very rarely take pain killers.

Perhaps look online and raise this with your doctor.

I hope you find a solution as there's nothing worse than constant pain etc.

Thanks, I'll chase this up.

KEFNB profile image
KEFNB in reply to Sallyannl

I’m glad to read this conversation. I have very high total cholesterol - about 350- it’s been that high for about 20 years. I don’t have my labs in front of me, but my LDL (the one doctors are focused on as bad) has always been too high as well. My triglycerides though are quite low. If you divide your triglycerides by your HDL you will get a number that indicates the size of your cholesterol molecules as well as your risk for a heart attack

The lower the number the better -ideal is close to 1 and the aim, according to my reading, is to be under 2. The lower number indicates large fluffy cholesterol molecules which do not stick to arterial walls.

(As an aside, to help calcium go into your bones and not cling to arteries, you must have adequate K2 along with your D3)

My number is 1 or below. My MD was only focused on my LDL , but I resisted the statins as there was zero history in my family of heart disease and years before I had a blood test done by a holistic MD which revealed large cholesterol molecules but I could not find the lab work

In the end, my doctor ordered an ultrasound of my carotids and a calcium test on my heart which both were pristine.

I had to do this to get her to agree to prescribe B12 injections-as she was certain that my symptoms were from blocked arteries.

Now, she wants me to have the ultrasounds done on my legs as she thinks it must be collecting there!!! I might do it to keep her prescribing the B12. As it has saved my life. I do order it from Germany, but am concerned that we might not always be able to do so and would like a legitimate source here in the states .

Thank you for this wonderful site-I imagine it has saved or dramatically improved the lives of thousands of sufferers ❤️

Sallyannl profile image
Sallyannl in reply to KEFNB

Carotids are these the veins in the neck?If so I had this scan , I asked the gentleman who done them what he found. He said I had equivalent to one grey hair on my head.

So my mini strokes were caused by b12 deficiency and enlarged blood cells ,which the ears nose and throat specialist picked up. The EN&T specialist was fantastic, someone you could talk too and explained in simple terms.

This is a good site, it let's you get things off your chest, helpful in reassuring people your not the only one with odd symptoms , and people giving good advise.

All we need now are informed GPs

KEFNB profile image
KEFNB in reply to Sallyannl

Carotids are arteries in the neck. I think you are on to something with the large red blood cells. My mother had mini strokes while we were on vacation and I thought it was from dehydration, but it’s possible she had MCV over 100

Sallyannl profile image
Sallyannl in reply to KEFNB

Did she have b12 deficiency ?

One for the ladies...

Have you been diagnosed with endometriosis ?

Look up endometriosis b12 deficiency.

Again investigations revealed I had this.

shal61 profile image
shal61 in reply to Pleaforsanity

I refused statins as my family have had bad reactions, unless I really need them which I don't now.

Nackapan profile image
Nackapan in reply to Sallyannl

I was told that too. Also the ratio is the important part now not the total figure

A B12 deficiency can cause problems with DNA replication. It's the cause of the macrocytic anaemia often associated with B12d.

It's actually a functional deficiency of folate. B12is involved in the reaction that converts homocysteine to methionine. A methyl group is transferred from methyltetrahydrofolate (MTHF) to the hCys, producing methionine and tetrahydrofolate (THF). Without B12 the reaction doesn't happen. Too little B12 means that the body has too little THF, and other folates. One of these, methylenetetrahydrofolate, is required for the formation of thymine - one of the bases of DNA.

So a folate, or B12, deficiency can disrupt DNA production, and cell replication. But RNA production remains unaffected. So cells can keep growing.

Here is something I put together, collating various sources, in an attempt to explain the interactions between B12 and folate.

b12science.com/B12Science/D...

That's really interesting and helpful, thank you. You give a mechanism which I shall pass on to someone else on this forum who asked me about this.

I've now read your very informative piece on the dangers of Folate while having a B12 deficiency. My question relates to why I'm much worse having had the second booster after feeling the benefits of the initial 6 injection followed by the first 3 monthly booster? Has the latest booster upset the equilibrium by demanding something in me that may also be low, say Iron or folate?

Having an injection isn't going to cause a deficiency in anything else, once the loading doses have done their work. If you had macrocytic anaemia then your levels of potassium may drop as the body boosts production of red cells. But that only lasts a few weeks.

Gambit62 profile image
Gambit62Administrator

unfortunately the potential for B12 deficiency in diabetic patients taking B12 is often missed due to the overlap in systems - particularly neurological symptoms. The mechanism in diabetes is vascular. There are at least 2 processes involving B12 that I am aware of that could affect nerve function - COMT and the production of myelin.

Thanks for that info. I shall read more about COMT tonight.

I do my own B12 weekly! What you don’t use you will wee out so don’t worry about having too much.

Do you get blood tests on the NHS? Do you inject B12 yourself and if so, how do you get hold of it?

I have to have tests with GP ( they make me) to get my levo. But I buy my own tests from medichecks. It’s so easy.

I purchased the B12 from Germany. And needles from the uk.

Loads of videos on how to do it utube.

I found the details for purchasing all on this site.

Told my endocrinologist and he said “ yep that’s fine”.

They are so easy to do

Thanks, I shall speak to the neuropathy dept at King's once the GP refers me.

The b12 and peripheral neuropathy title caught my attention. I would like some of your opinions. I was diagnosed with pernicious anemia 1 year ago following a year of what turned out to be neuropathy which started in my toes and eventually spread up my legs to my waist and my hands and arms up to my elbows. Mine is more semi-numbness rather than pain, but I do have occasional pain in my hands. My doctor started me on b12 injections upon diagnosis. I self inject once to twice per week which my physician is on board with. My macrocytic anemia was gone pretty quickly and I had improved energy. My episodes of double vision have never occurred again since b12 replacement. I continue to have neuropathy which is no better. I was sent in October for a MRI of my entire spine which showed subacute combined degeneration of my cervical spine. I was then sent to a neurologist who ordered some additional blood tests but told me she did not expect any improvement of my neuropathy since the delay before b12 was started. I guess my curiosity is why do some get fast relief of neuropathy after b12 and some never get improvement. Thanks for any input.

Hi, thanks for your post. I'm sorry I can't answer your question as to why some people get fast relief of neuropathy after B12 while some never get improvement. I have read that metformin blocks B9 and Iron as well as B12 from being absorbed in the gut. All of these I understand affect neuropathy. Because of the combined degeneration of your cervical spine, I suspect there may be other factors contributing.

fbirder profile image
fbirder in reply to jimmel196

I read your post and did a search on Google Scholar looking for a particular reference I've found useful in the past. But I got diverted by a new one.

This book extract - ncbi.nlm.nih.gov/books/NBK5... - contains loads of information of SACD.

The consensus on the cause is - we still don't know.

They say that only 14% of people with SACD recover fully after treatment with B12 injections.

jimmel196 profile image
jimmel196 in reply to fbirder

Thank you very much for researching that.

Hi, I've also been on Metformin for around 10 years, although I also have colitis. Tried to come off it recently but blood sugar levels were all over the place and I felt pretty unwell so back on it. I was 129 B12 when diagnosed. I was living in South India at the time where the population is mostly vegan and so had a very knowledgeable GP when it came to B12 deficiency. I was prescribed injections every two weeks and taught to self inject. Still self injecting. Thankfully, never suffered neuropathy and run 5-10km every day. I actually feel fitter than I did in my 20's. It frustrates me when I hear of people suffering needlessly, and also astounds me that there is so much ignorance and closed mindedness surrounding it. I hope you get sorted ❤️

Many thanks. It's the lack of knowledge amongst some medical professionals that frustrates me. When I told my GP about long-term metformin use and needing annual B12 tests in 2014, he dismissed it out of hand, and he's the diabetes expert at my clinic.

At least you're well informed, which is half the battle. Good luck!

Many Thanks.

I'm really sorry but I'm too short of time to reply this morning but you might find some useful comments in my replies to others if you go to my profile and look under the heading "replies". If you get a chance to have a look I should have a bit more time later to answer any questions.

Thanks, I'll look there. I am due a GP telephone consultation this morning so should know more by later today.

Caught up a bit now! 😃

Basically more B12 - possibly a LOT more, which may be hard to get from your GP - plus other vitamins and minerals, especially folate (B9), potassium, magnesium, iron and Vit D are all worth blood testing for and keeping in the upper side of the ranges.

B12 best not to retest as always shows high once supplementing but often test is automatic with B9.

Good luck with your appointment!

More later! 🍀👍

Many thanks. I have now had a recent B12 test which is at 575. My GP was concerned about the low folate but didn't specify the level. He is sending me for new tests including Intrinsic Factor and Iron. Despite all the info I put his way, he is reluctant to put me on monthly B12 injections. My GP has made the referral to King's College Hospital. In the meantime, my legs are getting worse and I am wondering about getting B12 from Germany and injecting myself. Also, my GP is looking at prescribing me folic acid, but I have understood that may cause problems if the amount of 'free' B12 is not sufficiently high. Is that correct?

Yes, exactly. It is important to control your deficiency symptoms with B12 first and add in folate to compliment it to stop the improvement from the folate masking some of the B12d symptoms, which are largely the same.It is because they are both methyl donors.

I hope you can get your B12 somehow.

Keep safe!

Many thanks. I now need to find out how to get the B12 from Germany, how to prepare it and what needles to use. I read Martyn's book on PA and B12 and in it he says he uses insulin needles to inject himself. I'll ask on the forum for more information.

Most of all, check out the replies on the subject by wedgewood and others on the same threads as her excellent replies.

Many, many thanks.

Good luck. Any problems please post again and we'll help you.

Pleaforsanity u yourself have alot of knowledge about b12 u know so much I'm impressed

Thanks, I'm finding out quickly that I need as much information as I can get. The doctors in my area don't really know much about it so becoming an expert is my only solution to this issue with neuropathy.

Hello, I'm not medically trained, just another sufferer (had neuropathy, vertigo, anxiety and much more), but just wanted to point out that the UK guidelines for neurological symptoms caused by B12 deficiency in the BNF (9.1.2) are for an injection 'once daily on alternate days until no further improvement', and then on to a maintenance dose - it could be that you need to return to every other day injections for some time and then work out what frequency actually maintains your improvement. Like many others here, I self inject at a rate that suits me with supplies bought from German pharmacies. Best of luck and welcome!

That's very helpful, thanks. I was surprised to hear when I had my second booster injection that no blood test would be required for a year. I'm going to insist on a test now and see what the level of B12 is. I'm also interested in what the levels of B9 and Iron are since I understand that metformin might also prevent these from being absorbed.

Hi.I first had my loading doses after being diagnosed with PA over 2 years ago now. I didn't suffer any balance issues but would get tingling in my feet.

After a couple of the 3 monthly ones it only helped other symptoms for a couple of days, I decided to self inject every other day. Symptoms really improved. After 6 months however my tingling feet became very painful so my GP referred me to a Neurologist. I was then diagnosed with small fibre neuropathy.

The Neurologist said to carry on what I was doing as quite often symptoms get worse before getting better.

2 years on and my painful feet are much better, but do still hurt once in a while.

I've recently noticed however that I've lost feeling in just one small area at the back of my heel which I'm seeing the Dr about tomorrow. It doesn't affect my balance but I'm concerned it may get worse.

Thanks. It does sound as if different people need very different injection intervals. I find it odd therefore that NICE recommends 2 months while the local doctors say every 3 months. This seems like a one size fits all policy rather than one driven by each person's individual need.

That's because the doctors you've spoken to are three years behind the times. That's then the entry in the BNF for hydroxocobalamin in people without neurological symptoms was changed from 'every three months' to 'every two to three months'.

However, as you do have neurologicial symptoms, the problem is that the doctors stopped reading after the first paragraph. You really should be having them every 8 weeks.

bnf.nice.org.uk/drug/hydrox...

I think only 3 years behind is being generous. I was impressed with the trainee doctor I spoke to this morning because she has not yet been placed in the position of having to balance budgetary issues with medical ones. She was well informed and was willing to act as my advocate. in contrast, when I speak to the head of the practice who is also the diabetic expert and my GP, he's at least 5 years behind the research yet arrogant in his belief that he knows all the answers. I aim to replace him with one of the new partners who has some humility and is willing to learn!

When I was diagnosed I was lucky enough to have a young GP who was keen to listen and learn. After I gave him a copy of Martyn Hooper's book he was all too keen to help.

A few months ago I had to change doctors. I had to speak to the new one about my medication, especially as gabapentin is a controlled drug. We talked about that, then she asked, "Why are you having B12 injections twice a month". I explained that my previous GP had agreed after I'd shown him my symptom diary.

GP. "So he did it based solely on your diary, not blood levels."

Me. "Yes, he decided to treat symptoms, not numbers."

GP. "OK. Now about the empagliflozin."

And it's not been mentioned since.

😀

It was my young nurse who said I should be getting every other day injections until symptoms ease and should be referred to a Neurologist. And it was my young nurse who spoke to my GP about it. She said they did a lot on B12 deficiency at University.

Last week after a blood test an older nurse rang me concerned about my B12 levels being >2000. I said thanks for your concern but they will be as I self inject regular to feel well. She seemed unimpressed.

It's a shame all healthcare professionals aren't better educated on something that is definitely not a one size fits all.

I couldn't agree more. Most of the battle is against ignorance from those we expect to be knowledgeable.

I've just had a telephone consultation with a 'trainee'. She was intelligent, understanding and knowledgeable. She will get one of the GPs to make the referral to KCH. Interesting that it took a trainee to ask all the relevant questions that the qualified GPs fail to ask. She asked me to describe how I fall, and I said that either my left leg trails, failing to respond to my command or the left leg acts involuntarily and tips me off balance. That's the first time anyone has asked me to explain how I fall.I also asked for a full blood test and more regular B12 injections. I'm keeping my fingers crossed as to whether the GPs will agree but I did quote the NICE guidelines of 2 monthly. Thanks for all your support and invaluable information. I used it in some form or other to present myself as knowledgeable and stay assertive!

Cherylclaire profile image
CherylclaireForum Support in reply to Pleaforsanity

2 -monthly injections may well be a useful maintenance regime, but first you need to get to a stage which you would be happy to maintain. I don't think you are there yet.

The correct treatment for those with neurological symptoms is initially an injection every other day until no more improvement can be gained by doing so. Then you could find 2-monthly might keep you there.

Wishing you plenty of repair !

Try cks.nice.org.uk

Thanks, I totally agree. I've asked for blood tests and also for more regular injections. I shall argue for an injection every 2 days and trust that the specialist at KCH will agree to put that in his report. That way the GPs will have to agree to it.

Cherylclaire profile image
CherylclaireForum Support in reply to Pleaforsanity

I was lucky to have a GP who pushed on my behalf.

After failing to respond to B12 treatment, and getting worse each time I had to wait another 3 months, my GP got my serum B12 and MMA tested. Although B12 was very high, MMA was raised. She had my injections increased to 2 a week, performed by some very reluctant and jittery nurses- a frequency which lasted for 6 months.

She suspected functional B12 deficiency, which was confirmed by the hospital lab, having ruled out other causes for raised MMA (renal issues etc). She knew about MMA testing because a whole 10 years previously, she had had another patient who was unresponsive to B12 injections -and this had been her diagnosis !

This was a good few years ago now, and eventually I started self injecting. I am able to manage the worst of my symptoms most of the time if I do this frequently.

My MMA finally reached a good mid-range position after three years. Folate, ferritin and vitamin D needed long-term management too. Thyroid started to struggle a bit at one point. Folate and ferritin were a bit blippy for about two years- not easily stabilised at good levels.

I self inject with hydroxocobalamin every three days, take vitamin D tablets (NHS, because of osteoporosis of spine) twice a day, one multivitamin and mineral tablet daily -and just lately Floradix once a day for iron, because hair started falling out again. Seems to be working for me.

Very difficult to do all this, even with a supportive experienced GP.

B12 deficiency is a hard one because of the amount of possible symptoms, how much they can vary in an individual and within groups, and also a variation in response to treatment : you can easily see how difficult to diagnose and treat. Please have a look at the Pernicious Anaemia Society website. There is a survey being carried out to determine the ten most important issues to consider for B12 deficiency research. Also some newsletters about some preliminary research findings which might interest you.

Thank you for such a full reply. I understand that your GP got behind you. I'm wanting to change mine, because of his rigid thinking and unwillingness to acknowledge that there are things he just doesn't know. Since he's now head of the practice, he's become obsessed with money matters and it's become even more of a struggle to get my medical needs met. That's why I'm keen on getting the support of the specialists at KCH, which will override his clinical judgement.It does sound as if the way out of this is to demand the regime the nurse instigated at the beginning i.e. an injection every 2 days until my symptoms disappear. If not I am open to paying for the B12 myself.

Hi

Sorry to hear you have B12 related issues.

I'm vegan so have to take supplementary B12

Re the Type 2 - how did that start?

What was your BMI then and now?

Many with high BMI's find that their Type 2 goes away when they get to a low BMI of about 20-21.

All the best

Alps

I'm not a fan of BMI. Whenever I've got to levels approaching 21, I look and feel anorexic. I am comfortable around 23 but no lower. I guess it's all a trade-off and I'd like to find another way to manage my diabetes and address the B12 deficiency exacerbated by the metformin. I'm so slim that the diabetic consultant at the hospital thinks of me as type1.

My diabetic nurse put me on empagliflozin for my Type 2. I had been controlling it by diet, but lockdown and a cancer scare last year meant I gave up on that. I had tried metformin before that, but the side effects were dreadful.

Ok a BMI of 23 is fine, if you don't feel well with it any lower

A Dr David Unwin, an NHS Diabetes specialist, suggests that all calories consumed are not the same thing, as far as addressing Type 2 goes.

He says a Low carb (High Fat) diet is better than a High Carb/Low fat (lots of fruit and veg) diet to address Type2.

(Both the above diets are equal in calories btw)

Not too sure about the other issues that a High Fat diet can cause though!

All the best

Alps

Thanks. I have tried all sorts of remedies and am happy with my sugar control. Now it's the B12 that I need to sort out.

As a vegan diet is low in B12, I take 10ug a day, and my Labs are always in the top quarter of the range.

So, if you say you are willing to try anything, suggest you try a vegan diet for a month or so and see how you go?

As they say, you don't know what's round the corner, unless you actually go round the corner!

All the best

Cherylclaire profile image
CherylclaireForum Support in reply to Pleaforsanity

The cost thankfully isn't that much. Still, it isn't going to be an easy choice to make for most people ! It would be good to have a medical professional willing to recognise your needs. A relief to know that there is the option to self inject if not (yet) recognised.

So here's hoping you never have to.

Good luck at KCH and let us know the outcome.

I will do that, thank you. The doctor who phoned me this morning has already arranged my blood tests so here's hoping...

"i.e. an injection every 2 days until my symptoms disappear"

That's not quite right. It's every 2 days 'until no further improvement'. Some people's neuropathy never disappears.

Sorry I didn't see your reply until now. You are right to point to the difference "until no further improvement." Thanks.I read the information you kindly provided via your link and have another question. My latest B12 level is 575 and my GP has noted that my folate is low (he didn't specify the level but was concerned), so he wants to prescribe me folic acid. Is folic acid detrimental if my B12 is at this level? He's also wanting to send me for Intrinsic Factor and Iron tests.

If he prescribes folic acid it will be high dose (5000 mcg). I would go for a supermarket folic acid supplements of 400 mcg and take one a day. That should get your levels up fairly quickly.

If you have pernicious anaemia then you almost certainly have low stomach acid. That can affect absorption of folates from food.

Folates in food come with multiple glutamate groups attached. Before the folate can be absorbed properly these need to be removed by pancreatic proteases. These enzymes need to be activated by stomach acid.

So somebody with PA is likely to to have low stomach acid, which results in difficulty absorbing folates from food. Folates in supplements, however, are absorbed OK.

It is recommended that women of childbearing potential should take 400 mcg of folic acid a day to prevent neural tube defects in any children they may have. That level of supplementation should be fine for everybody.

The lack of stomach acid can also affect the absorption of iron and Vitamin D.

You should only take iron supplements if your doctor tells to to do so. Too much iron can be harmful.

The NHS recommends everybody take Vitamin D supplements in the autumn and winter (and all the time during lockdown).

Thanks so much for your information. I understand that by taking metformin, this blocks absorption through the gut wall of B12 but also Folate and iron. Is this correct? If so, would they administer folate via injection rather than tablets?

I'm not sure exactly how metformin hinders absorption of B12.

A quick google brings up -

The proposed mechanisms to explain metformin induced vitamin B12 deficiency among patients with T2DM include: alterations in small bowel motility which stimulates bacterial overgrowth and consequential vitamin B12 deficiency, competitive inhibition or inactivation of vitamin B12 absorption, alterations in intrinsic factor (IF) levels and interaction with the cubulin endocytic receptor [28]. Metformin has also been shown to inhibit the calcium dependent absorption of the vitamin B12-IF complex at the terminal ileum. This inhibitory effect is reversed with calcium supplementation

None of those will cause problems with absorption of folate or iron.

I'm uncertain just how metformin prevents B12 uptake from the small intestine, yet all the literature points to that as a recognised fact. As to folate and iron there is significant data that it may prevent folate absorption and maybe iron as well. I don't know what the mechanism might be but I'm hoping that a referral to KCH may provide some answers.

Hi, I've read your very useful post on ordering B12 ampules. Unfortunately, both sites mentioned will not deliver to the UK. I'm considering using a re-directing site in Germany such as mygermany.com. Do you have the same problem ordering your supply directly? Many thanks

People have reported success using bodfeld and apohealth.

bodfeld-apotheke.de/product...

apohealth.de/en/products/b1...

You are a very kind and helpful person. Many thanks, I have successfully ordered it via the first link. I hope I can inject it using my insulin needles (4mm and 31g) and subcutaneously. I take it that 1 vial can be extracted into my insulin pen or will I need to purchase a different delivery system?

It depends on the capacity of the syringe.

A 4mm needle might be too short for subcutaneous injection. But, if you're using it for insulin then it should be OK for B12.

Many thanks yet again.👍

I am also a retired psychotherapist and had type2 diabetes. I reversed that diagnosis by heavy weight loss and if you Goggle that you will find a lot of people have done the same. Were you to do this you would no longer need the metformin.

Despite a diagnosis of neuropathic pain I was only treated with five loading doses and then jabs every 3 months which I managed to get increased to every 2 months. My pain, balance, walking, memory were so bad by the start of 2020 that I began self injecting every other day and continue to do so. As this progressed I found that all these have gone except for the pain which is reduced by about two thirds. Depression that plagued me for decades; severely damaged my life and never responded to antidepressants has also completely gone.

I also have degrees in biochemistry and physiology/pharmacology together with many years working in medical schools and universities. So we have a lot in common. Hope you get it sorted out. Stay safe.

Thanks for sharing your experience. I have tried all sorts of treatments over the past 22 years, including travelling to Germany for stem cell therapy. This did slow down the severity of the diabetes and I was able to manage without insulin until 6 years ago. However, the hospital consultant warned me in 1998 that over time I would likely need insulin. I am slim and have not needed to lose much weight, but I think that sitting for long periods as a psychotherapist may have contributed to my diabetes.

It's not so much weight - more the waist tyre that stops the insulin getting out. It may still be possible to improve your diabetes with a short, sharp low carbohydrate diet and perhaps worth a try. The original BMI used to be height, weight and skin fold thickness - the last measured at the sides for females and half way between the sides and the belly button for males. Its not used anymore because of the cost of the skin fold callipers yet it is very important and much better. Keep well.

Thanks. I shall keep you updated once I get referred to KCH.

Hi. I’m in a similar position to you with regard to length of time diagnosed with type 2 diabetes and taking metformin. I also have spinal stenosis diagnosed around the same time. Symptoms for spinal stenosis were very similar to sciatica-disabling cramps in buttocks and back of thighs. Have been taking tramadol for these with good effect. However, I have been suffering with additional symptoms which gps have attributed to the spinal stenosis. I was tested for B12 deficiency by chance when I went to doctor with sleeplessness and exhaustion not being able to sleep at night (perhaps an hour or two at most) then being able to sleep all day) and asked for sleeping tablets so that I could be knocked out during the night thereby getting some kind of life during the day. Only wanted them short-term so she reluctantly gave me some. During that consultation I mentioned restless legs also woke me up at night when I did manage to drop off. The result was that My B12 was extremely low and I had the loading shots.

By this time, I was still cramp free from the spinal stenosis but over the years had gone from walking normally having got rid of the cramps to now only being able to walk a few paces and having to be in a wheelchair for any longer distances. I also have permanent nerve damage and all the other symptoms that others on this site list what they suffer with and which I now attribute to the low B12 going undiagnosed for so many years.

I am now self injecting (due because of all the information gained here from some very knowledgable people) after being told I did not need the 3 monthly injection I was prescribed and after 6 months after the loading doses all my problems started recurring. I have now been self injecting for over two years. Some symptoms have improved but I fear that I am stuck with some or all of the nerve damage.

Hope I haven’t bored you to death with this long post

Your post is very helpful, thank you. I wish you well in your recovery.

Sallyannl profile image
Sallyannl in reply to diabetty

'Hope I haven't bored you to death with this long post'

Far from it diabetty, It will only enlighten people to realising that b12 injections are for life.

Thank you for writing this, I do hope your symptoms lessen in time, and sending best wishes.

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