Pernicious Anaemia Society
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Can you just recover from a B12 deficiency?

Hi!

I’m looking for some advice.

A number of years ago, I went to my then GP because I had a number of tiny ulcers all over my tongue (double figures). He ran some blood tests and diagnosed me with a B12 deficiency. He prescribed me with B12 supplements for 6 weeks (cannot remember doseage or frequency) but I took as prescribed and had a boood yest again which showed no improvement. The GP explained about intrinsic factor and then advised of the need for injections starting with the loading doses then 12 weekly.

I swapped GPs when I moved and this was never questions, injections were given as normal until a new surgery took over who insisted on running a blood test. The first one they did was immediately after a shot which would obviously show my levels as being fine. I insisted on another when my 12 weeks were up and they did another, still saying they were fine and I no longer required the injections. This was around a year ago.

Is it possible to recover? I definitely felt better after my injection. I can’t remember the last time I felt well rested. I’m often wanting to go sleep around 9pm and even if I get 8 hours sleep I still feel shattered.

I’ve tried exercising to see if that helps but I still feel shattered. I’m become short of breath in exercise quickly and it doesn’t seem to be easing the more I do...I would have thought I’d have gotten use to it.

I’ve just been reading through some of the other symptoms and tinnitus/irritability were on there. I get ringing in my ears sometimes and my mood is definitely up and down, more so when I’m tired. I’ve always put my mood down to hormonal contraception before but I don’t remember always feeling so moody.

Does anyone have any advice? Or experience?

TIA

13 Replies
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You should contact the office of the doctor who first diagnosed the deficiency and request a copy of your chart. It should include all your previous test results along with the doctor's notes about your diagnosis. You may need to make the request in writing and you may be charged a fee to make the copies, but you are entitled to request a copy.

Once you've obtained this info, make a copy of just the tests and notes that are specifically related to the B12 deficiency and take that over to your new doctor. Then you can insist that they resume your injections.

What your new doctor is trying to do is to prove that you have a deficiency in the first place, but serum B12 levels are not an accurate measure once you've been on injections, so you need the proof from when you were diagnosed. That should be enough to convince the new doctor. Also, be sure to mention that you have been experiencing shortness of breath. That is a very important symptom that should not be ignored.

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you can recover from a B12 deficiency

whether you can recover from a B12 absorption problem is really the question - there are a few causesthat are treatable - mainly h pylori infection but as you have never been treated for that you obviously won't have recovered from it.

You still have a B12 absorption problem - you still need to find a way that isn't your gut to make sure that your B12 levels stay high enough to make sure that your cells are getting enough B12. Whilst people who don't have an absorption problem can access stores of B12 in the liver - people with absorption problems can't because accessing the store relies on the same mechanism - absorption on the ileum - that is broken in someone who has an absorption problem.

This means that unless you have regular top-ups you will eventually become deficient again.

Further, after loading shots the normal range doesn't apply - it introduces a new factor that isn't there in populations that haven't had shots - the possibility of a reaction that inhibits B12 passing from your blood to your cells where it is needed. If this reaction occurs it can be treated by keeping levels high enough to ensure enough manages to trickle over into cells. On average people who have had shots report that they need their serum B12 levels to be around 1000pmol/L - many of us need it much higher - mine is permanently off the measurable scale or I just cannot function - though I achieve this by use of supplements and sourcing injectable B12 outside the UK and treating myself (which I feel comfortable doing as B12 isn't toxic).

If you are UK based then you should write to your GP, with a copy to the practice administrator drawing their attention to the BCSH guidelines which are that treatment for B12 absorption problems is loading shots followed by maintenance for life at 3 monthly intervals, without referencing B12 levels to determine if a top up is needed.

They can access the guidelines through the BNF but they can also be accessed here if you are UK based

onlinelibrary.wiley.com/doi...

If that doesn't get them to reinstate the shots - preferably redoing loading shots give the time since your last shot - then come back - may be that you will actually need to join the PAS and ask them if they can intervene.

pernicious-anaemia-society....

pernicious-anaemia-society....

If you aren't UK based then please let us know - protocols vary from country to country and we may be able to find someone on the forum who is more familiar with the protocols specific to your country.

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I am always surprised by how many GP surgeries test levels after loading doses, as if you might not need them anymore. Frustrating that so many appear to not understand the condition. My haematologist said the loading dose recharges the liver for about 2-3 years even then the serum level may longer be high enough, hence I think why many of us go off the scale to stay sane with supplements whilst ongoing injections are used to maintain liver stores. One nurse refused to give me any more, at one stage, because my level was at 1200, thankfully my GP put her right but it could so easily have been different.

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I always point out to them that great, it recharges my liver! But when my liver releases it to my gut, what happens then? My gut can't absorb it! It just goes down and out without doing a thing to replenish levels. They seem confused by that. Somebody on here likened it to trying to fill a bucket with a hole in, which is an excellent analogy.

Your haematologist doesn't sound like he/she understands the mechanism of B12 delivery where there is an absorption problem.

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I would say AFTER you finish loading doses to stay on 3000 mcg oral sublingual liquid or tablet daily so you don't tank again. people who are B12 deficient have a reason they are deficient, and it's likely that reason is gut related or gene related, so if your B12 deficient once, you will be again. I'm doing my own oral treatment doing my own loading doses by oral route sublingual currently but once that is done after a couple of months I'm staying on 3000 mcg a day. B12 is not dangerous in high doses because it is water soluable and you pee out any excess, but in B12 deficient patients I think we'd love to be at the point of excess instead of to the point of drop dead empty. Don't wait for doctors to figure this out, do your own research, treat yourself with oral B12 at proper doses if you want to. I do, and I find no issues with it whatsoever and it's dirt cheap to purchase.

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I’d support you in this, as many of us do this as a result of experience. Be careful to ensure that your other vitamins and minerals are being taken care of too, though.

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Hi,

Some links that may be of use.

Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/... (may need to be B12d.org member)

Risk factors

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

UK b12 documents

B12 documents

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

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

NICE CKS

cks.nice.org.uk/anaemia-b12...

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies.

PAS (Pernicious Anaemia Society)

if you have a PA diagnosis or suspect PA then may be worth joining and talking to PAS. Based in Wales, UK but has members from around the world.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

UK B12 blogs

Martyn Hooper's blog about PA

martynhooper.com/2018/02/10...

B12 deficiency Info blog

b12deficiency.info/blog/

More B12 info in pinned posts on this forum.

I am not medically trained.

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Thank you all for your responses. I’m going to book in with my GP tomorrow to discuss it further.

Presumably they’ll have my records from my previous GP since they could see details of my cervical smear and follow up treatment when I was under the previous GP.

With reference to the shortness of breath, do you not think it’s possible that it’ll take longer to adjust? Or would you have have expected it to for better by now?

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Hi Loonywitch in addition to the excellent advice given above if you do manage to get B12 injections restored (or self supplement) and hopefully get hold of your notes it is also important that your Folate level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

.

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Update:

Saw the nurse practitioner today who is doing a full work up of bloods (booked for thurs) so I’m going to contact my old surgery for details as suggested above.

I haven’t had it since June 16 so assuming bloods will show the issue but she then wants to do the intrinsic factor test which seems pointless.

My levels were over 500 in Aug 16 but as per the post further up, that has no bearing, right?

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if you were deficient once, it tells me you will be deficient again. you need regular B12 to keep your stores up. B12 deficiency basically means your stores were extremely low if he was giving you shots. Of course you feel horrible! So, if your new doc won't do shots, and you know you're deficient (which you likely are based on history of it and your current symtoms) take the bull by the horns and treat yourself... you can get oral sublingual 3000 mcg liquid B12 (I get mine from Amazon) but most healthfood stores should have it. I don't like the sublingual tablets as much and find the liquid absorbs super fast. I take 3000 x2 daily and then one 2500 mcg tablet, so I take 8500 mcg daily as my loading doses and I'll do that for 6 to 8 weeks or until my symptoms feel much much better. watch these videos... and get the book Could it Be B12? I got mine from Amazon... you need replacement, but you can do it yourself, take high doses (6 to 9000 mcg daily) for 6 to 8 weeks, see how you feel. If you just take small doses you will never refill your tank, your gas tank is near empty currently if you feel as awful as you do... and putting tiny doses or 5 bucks at a time in the tank will do nothing to improve your symptoms. You need to get your B12 up to par again with loading doses THEN take a maintenance of 3000 mcg a day or so. Normal people with normal diet take 1200 mcg a day for a "supplement" to keep them from becoming deficient. Giving 1200 mcg to a B12 deficient person daily does absolutely nothing. watch these vids too

and

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one more comment on tinnitus this time from Loonywhitch - although this is denied by my consultant - I KNOW that I have tinnitus leading up to my next b12 injection - and then it stops.....until the next time.

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My surgery has just rang to book me in for an appt with GP because my bloods show abnormalities. She mentioned iron profile...is B12 covered under the iron profile?

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