Diet related b12 deficiency - Pernicious Anaemi...

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Diet related b12 deficiency

Alfabeta
Alfabeta

Hi All

I have diet related b12 deficiency (I have a vegetarian/vegan diet and knew nothing about b12 until I became ill) and have had pretty serious problems caused by it and I am still having neurological problems which I have voiced regularly on this site.

I was reading the NHS site today and came across this section:

‘Diet-related

If your vitamin B12 deficiency is caused by a lack of the vitamin in your diet, you may be prescribed vitamin B12 tablets to take every day between meals. Alternatively, you may need to have an injection of hydroxocobalamin twice a year.

People who find it difficult to get enough vitamin B12 in their diets, such as those following a vegan diet, may need vitamin B12 tablets for life.

Although it's less common, people with vitamin B12 deficiency caused by a prolonged poor diet may be advised to stop taking the tablets once their vitamin B12 levels have returned to normal and their diet has improved.’

My doctor and the nurses equate b12 deficiency with PA and have completely dismissed my neurological damage which relates to brain malfunctions. I was wary of pushing my case given their stance and, reading this statement from the NHS, I think I was very wise to do so.

Any comments?

22 Replies
oldestnewest

Buy some low dose B12 tablets - 2 x 50 mcg - and take one a day.

Ask for referral to a neurologist.

Alfabeta
Alfabeta in reply to fbirder

My doctor thinks I have pa and I had the six injections and now have them 12 weekly. I also supplement daily with a multivitamin and b12 oral spray and 100 ug tablets about 4 times a day. I have been on this regime for around four years. My symptoms have improved but I am still getting symptoms.

Surely if you are having neurological symptoms you would need B12 injections first. Then address diet and take B12 tablets . My understanding is vegans do have to take B12 supplements. Most vegetarians do too.

Alfabeta
Alfabeta in reply to Nackapan

I had b12 injections and I still am every 12 weeks for over 3 years. According to the NHS statement, I am lucky as it appears that advice to doctors is to treat dietary b12 deficiency with tablets if at all.

I copied the NHS advice because people have stated that doctors have sent people away to essentially heal themselves by taking b12 tablets (as Fbirder has suggested above) if they had done this to me I would have been even more damaged than I already am.

Gambit62
Gambit62Administrator

Alfabeta, a vegetarian/vegan diet doesn't make you immune from developing PA.

If I remember previous posts correctly you have gastro symptoms that would actually suggest PA.

It sounds as if your doctor and nurses are actually confusing B12 deficiency and macrocytic anaemia - so not aware that B12 affects more than the size and shape of your red blood cells and that the symptoms of B12 are not all down to anaemia.

Alfabeta
Alfabeta in reply to Gambit62

Thank you, Gambit. You are possibly correct, I have no way of knowing but I do know that the injections correct my symptoms and they cease after the injection and recur between week 6/8 which suggests a decline in b12 in my system although I do take supplements.

My symptoms have improved dramatically over the four years since my diagnosis and I live in the hope that my condition will continue to improve.

I am wary about pursuing the issue with my surgery as they dismiss my symptoms out of hand - they really do have a very narrow view of P A symptoms.

Even though injections are effective, most of it is excreted from the body. I remember, after 10 injections of 1500mcg, my serum B12 went up from 206 to 1730. I remember reading somewhere that usually 10% of the injection dosage is kept in the body while in case if tablets, it falls to almost 1-2% only.

I wonder why people are prescribed only a 500mcg tablets if the aboce is true.

Alfabeta
Alfabeta in reply to linkerror

I have read this a number of times. The advice I’ve been given is to have smaller dose tablets more often rather than large doses in one go. Either way, if you have an inability to absorb b12 it makes little difference any way. In my case, my surgery has assumed I have pa hence I get the injections. I have no intention of challenging their view or they may cease the injections.

How do you find out for sure whether you have pa or not?

linkerror
linkerror in reply to Alfabeta

Well, first of all, I am from India and a pure vegeterian (I eat dairy products). I faced this deficiency for the first time in my life last year at the age of 37. It went down to 206 and I had burning and tingling sensation in my arms and should blades. Thankfully my family Dr advised me to get my B12 tested and put me on a course of 10 injections.

Recently after 10 months, I again checked my B12 which is now fallen down to 600 from previous 1800 post jabs. In this 10 months I had taken 1500mcg tablets for a month. I have no idea whether this is normal or not though.

To make sure I am absorbing B12, I have started same 1500mcg tabs again and will redo test exactly after 1 month to see if the serum level has increased or at least stayed same as 600. Crude way to check about PA but will give it a try.

If it falls down further, I can go back to my Dr and show him results over the period of time and hope he would again give me jabs.

Alfabeta
Alfabeta in reply to linkerror

That seems like a good plan. I had a retest although I was advised against it by the b12 society and they were right, my b12 levels were within range as I was supplementing and only stopped for six days and my doctor refused to give me injections in week 8 rather than week 12. I do not know if it was the b12 from my injection that was still in my system after 6 weeks or it was the b12 from the tablets - if it was the latter then I presumably do not have an absorption problem.

Nice conversing with you - good luck and good health.

By the way, my problem was madecworse if not caused by my doctor prescribing omaprezole for over 6 years without any checks.

JoRR
JoRR in reply to Alfabeta

I've has some similar issues (vegetarian, but definitely not vegan, B12d causing all sorts of issues including neurological. I think for me it's probably a problem with absorbing, rather than diet related, given that actually not very much dairy / eggs is required to achieve the RDA, and eat easily enough)

I just wanted to respond to your comment about testing B12 levels after tablets, and if they hadn't dropped then presumably you are absorbing ok. As I understand it, tablets can raise your blood serum B12 level even if you are not able to absorb and use the B12. I don't understand all the details, except that the enterohepatic process of obtaining and using B12 from the diet is very complex, and has several different stages that can fail. I think it's something to do with the proportions of active /inactive B12 in your system. The standard blood serum test measures both, and assumes a 'standard' percentage is active. But that is not necessarily the case - it is possible to have an in range total B12 result but be very deficient in active B12.

I had been getting a lowish dose of B12 through multivitamins that I had been taking long term after advice to do that from a GP. I was getting continued issues (depression, fatigue, tinnitus, dizziness, plus other things) and went back to the GP to see if there might be something else going on. Different GP retested B12 and advised me to stop taking the multivits as they would affect the result. It was about 8 days after stopping that I was retested, and just below the range, but not much. I managed to get loading dose injections again, but they wouldn't give me more than 12 weekly maintenance. Symptoms returned massively within about 5 days of the end of the loading doses. Didn't get very far with the doctors, so gave up and started self injecting. I'm still injecting every 2-3 days. Would like to space out a bit more, but I do get symptoms coming back so I'm carrying on for now.

I think one of the things about ability to absorb is it's not necessarily all or nothing - you can still be absorbing a bit, but not as effectively as needed. I have heard that long term use of medications like omaprezole can permanently damage your ability to absorb, even once you've stopped taking it.

Kish2929
Kish2929 in reply to linkerror

Hi, I have the same symptoms as you. How are your neurological symptoms now after you stopped taking injections? And did you take methylcobalamine injections? Am from India too and doctors are clueless about these things.

linkerror
linkerror in reply to Kish2929

I was on 10 Methyl injections last year between Jan and Feb. It took 3 months for me to start feeling good again. The burning sensations stopped in 3 weeks after I started the course. Fatigue took the maximum time to fix as the new RCBs usually are made every 90 days.

I have started getting burning sensations once in a while after 10 months and thats why I wanted to retest the levels.

Kish2929
Kish2929 in reply to linkerror

I have been having burning feet from 2 years. I was diagnosed with b12 deficiency after 16 months of experiencing the symptoms. So, I have been on tablets and weekly injections for 7 months now and the burning is still there. What are the tablets that you used?

linkerror
linkerror in reply to Kish2929

I was on B-fit CD capsules. Its a multi vitamin tab but with B12 dosage as 1500 mcg so it essentially focuses on B12 def.

Kish2929
Kish2929 in reply to linkerror

Ok. Good to know that your neurological symptoms have improved.

Thank you - I really appreciate your posts.

I think that PA can only be confirmed with a test for intrinsic factor but maybe you could do a search for it read and read replies by Foggyme, Gambit62 and Sleepybunny (maybe others) to confirm this - my brain is loads better but I can't remember this detail with confidence.

Could you self inject between your Dr's jabs so you get the level of treatment that you obviously need? I think if you did you would stand a much better chance of increasing your rate of improvement and the final outcome. If your B12 levels remain suboptimal then you run the risk of further damage and consequently needing increasing amounts which in time will compound the problem.

If you need it, you need it!

JoRR
JoRR in reply to deniseinmilden

A test for intrinsic factor can confirm PA if you get a positive result, but it's really important to know that a negative result does not rule it out as something like 40-50% of people with PA get a negative result. (I think this was recognised when the Schilling Test was still in use. That tested ability to absorb, but involved consuming radioactive B12 and the test is not available any more.)

deniseinmilden
deniseinmilden in reply to JoRR

Thank you for confirming all that - very much appreciated.

Thank you Denise.

My symptoms return between weeks6/8 then usually cease. I get my injection and the cycle begins again - the symptoms reappear in weeks 6/8. As I have said before, aspects of the symptoms have ceased which suggests that I am getting better but, if I was running out of b12 why do the symptoms cease after 6/7 days?

Hmmmmm - intriguing and interesting! I don't know - just wonder if it could be part of the body learning to cope with lower levels or something like that?

Nothing really useful to add but thought I’d chime in with my story for support! I am a vegan and paid for a private b12 test to get my levels checked, as I am aware it can be a problem for some vegans who don’t supplement. When it came back very low, I just assumed it was because of lack of b12 in my diet. I took the results to my doctor who insisted on testing me for PA, and I’m so grateful he did, because it wasn’t my diet. I had never even heard of Pernicious Anaemia!

On 3 monthly injections now.

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