Low B12 and red blood cells odd shape large

[Plumpudding]

My B12 was very low last year. Dr has just left it. I've tried raising my B12 with supplement, coukdnt do it as felt 1000%worse. I've tried food, beef liver, steak, milk, eggs etc but have revving up of symptoms. I don't know what to do. No way I can try injections as to scared.I'm self employed and cannot afford to lose my job so taking time off for me isn't an option. I'm lost with this, does anyone else get worse with natural B12 in food. I never believed this was possible. I'm scared I will die from this. The gp is useless. I'm struggling to get them to retest my B12. It's was 112 last year which is low but no action needed. Should I trust gp and just stop trying to raise it. As I can't function like this

[wedgewood]

Action was most certainly needed at 112 if it was a blood serum B12 reading . Do you know if it was a blood serum reading ( which contains inactive B12) or an Active B12 reading . Did you get a print out of your blood test . And you have such awful symptoms .

If good B12 food like you describe has not helped you at all then it’s obvious that diet is not the reason . So many doctors are so ignorant about b12 deficiency/Pernicious Anaemia . No , do not trust your doctor . I had to take responsibility for my health after being ignored with what turned out to be P.A. ( my B12 level was 140 ( blood serum) and my feet were numb and I had many other horrible symptoms . My feet will never recover . “ Everything normal, no action required “. I have to self -inject . Because although I got a diagnosis of Pernicious Anaemia with a positive Intrinsic Factor Antibody test. 1 injection every 3 months was insufficient to keep symptoms at bay , and he wouldn’t budge. The intrinsic factor antibody test is imperfect for about 50 % of Pernicious Anaemia patients because they do not always show up , unfortunately.

I would change my doctor or even my surgery asap . Get another B12 test and come back and tell us how you get on . You must not be ignored any longer . I urge you to do this .

I don’t yet advise you to do this , but it is possible to get B12 injections from some beauty salons . But best to get them from your doctor . They cost at least £30.00 D.I.Y, cost about £2.00 . Best wishes .

[Plumpudding in reply to wedgewood]

Thank you. It was 112 then I bumped it up to 135 2 weeks later after eating liver, as I saw it was the thing they used years ago before medication. It worked a little bit. I've not got pa I was negative for antibodies. My body just seems to hate B12, it's over stimulating to my system. I've heard of reversing out so could be that. So sad isn't it, they just don't care at all

[wedgewood in reply to Plumpudding]

Getting a negative test for the Intrinsic Factor Antibodies does NOT mean that you do not have Pernicious Anaemia . As I wrote in my previous message. That happens to about 50 % percent of P.A. patients , if they are not producing the antibodies . Your doctor should know that.

Your doctor needs to read the latest N.I.C.E. guidance on B12 deficiency , published in March 2024 . You should read it yourself also . Not a perfect piece of information, but worth of a read. It calls Pernicious Anaemia Autoimmune Gastritis .

Please find out if the 112 figure you mentioned refers to blood serum B12 test or an Active B12 test . This is important . You have a legal right to have a copy of your test . I suggest that you get one . It makes a huge difference. which kind of test you had .

[Plumpudding in reply to wedgewood]

It was serum B12 112 my active was 31.5 I had that done privately recently

[Nackapan in reply to Plumpudding]

With a level of 106pg/ML (200-900)I collapsed and initial symotins vertigo and bedbound .

Get a copy of your blood test result .

The NHS are notoriously bad with ongoing treatment for PA / B12 deficiency.

Usually good with giving initial loading doses of B12 Injections of 6 over 2 weeks with a reading below 'their' in range result.

If its dietary I.e if you are vegan.

B12 tablets can work.

If an absorbtiin problem injections are needed .

If are are able to work but struggling your body is under alof of stress .

Everyone has a 'tipping point '

Sounds as though you are able to absorb and utilise a little of a b12 supplement to raise levels so quickly and function at all.

Not enough though it seems .

Write to your G.p practice.

Quote first B12 test result.

Date.

Quote NICE guidelines. Just write that . Up to them to read them.

List 5 worst symptoms.

Ask for treatment

Then book an appointment with another G.p after that letter in .

Otherwise go privately as you did for othef test .

Or self treat.

If a member of PAS they shoukd be able to advise.

Also have information for professionals

[wedgewood]

With such a low blood serum content you should have been treated immediately with loading doses of B12 . 112 is really low . I don’t know why you didn’t get immediate treatment with B12 injections . If you cannot absorb vitamin b12 in food , then you won’t be able to with tablets either . Sound as though you could have Pernicious Anaemia. I can only reiterate that a negative Intrinsic Factor Antibody test does NOT rule out PA. That is stated in the Latest N.I.C.E. guidelines . For a doctor not to have treated you when you had such a low B12 serum reading is outrageous . Change your doctor . The range is always included with the blood test .

The size of your red blood cells is also an indication of a problem with B12 absorbtion ( Macrocytosis ) And as you can’t seem to absorb B12 in your diet , P.A. is a possibility .

Change your doctor .

[Technoid]

With a serum B12 of 112 you are (were) seriously B12 deficient by almost any known lab standard. It is not surprising that you feel 1000% worse with a B12 supplement. That response is a good indication that you can absorb some oral B12 and therefore it could be a treatment option for you, although injections are often preferred and are the gold standard in terms of effective treatment for serious B12 deficiency. Many on the forum find supplemental B12 is inadequate to keep their symptoms at bay but it does work for some.

What you experienced with the supplement is indeed what some call "reversing out" or what I call "early treatment decline". With a serum B12 of 112 I would be surprised if you immediately felt better because I don't think thats common with serious/long-lasting deficiency. Early treatment decline is much more likely (although the average GP has no clue that is the case).

Your neurological function is likely damaged but the true extent only becomes clear with more B12 in the system. With sufficient B12 available, damaged nerve structures such as myelin sheaths are rebuilt with the correct components and start to transmit better, but better nerve function can mean more pain, numbness and other types of dysfunction as the repair and rebuild process begins. It does settle down with time but if you have a lot of damage it can be some months of hell.

There's nothing wrong with the B12 supplement and there's no reason to try and get B12 from animal food sources instead, the response from your body will be weaker but that's because you're getting LESS B12 and thus slowing the recovery process. Probably not what you want as neurological damage needs to be corrected as quickly as possible, even if it is a painful process to get through (we've all been there). It's good to make sure of adequate folate during this time, also iron and a generally good diet to help support the healing and repair process. Taurine and Creatine would be good to add too. If you have low stomach acid, which is common with PA, others will have useful recommendations for you there.

For a GP to suggest that a serum B12 of 112 with accompanying serious symptoms does not require urgent corrective treatment borders on malpractice.

Not treating a B12 deficiency, or not treating it adequately is not an option. If you ignore it or do not take steps that correct it adequately, the deficiency will eventually make it impossible to work, because you won't be able to think straight and then it won't be your choice to make anymore. Nobody wants that, so whether it is supplements or injections, treating this needs to be numero uno of your life until you reach the other side. I cannot overemphasise how seriously you should take treating this.

Your body doesn't hate B12, indeed, quite the opposite, it needs a lot more than it's getting. As they sing in that old song, you gotta push on through to the other side.

[BeachArt]

With a serum B12 at that level your GP should have started you on injections straightaway. Sadly, however, we see it all too often here. Doctors just do not know enough about B12 deficiency or Pernicious Anaemia, nor do they wish to educate themselves on it either, and then we are the ones left suffering. You could change surgeries, but you may end up with another doctor who is just as clueless as the one you have now. I was in a similar situation, but I was lucky to find a different GP at the same surgery who knew a little about B12. But I did go in armed with information: my symptoms, my family history of PA, NICE guidelines, and info on B12d/PA. Alongside this I also typed up a letter in which I asked for a trial of B12 injections, stating that they were not toxic, I could not overdose on them, and that if my body didn't need it I would just wee it out. In this letter I also stated my neurological symptoms and said that should they refuse B12 injections, and I then suffered permanent symptoms, I would be holding them accountable. I got the trial of injections, they helped massively. I still get NHS injections once a month, but I supplement those with my own supply, and have injections every 3 days. I have my health back. I have my life back!! It's your health and, although you shouldn't have to, you do have to fight for it. No one else will!!

[Gambit62 Administrator]

serum b12 is only accurate to 20% - the change in range between your two tests is within this range meaning that it is perfectly possible that your levels hadn't actually risen.

As others say you should definitely have been started on injections to correct your B12 deficiency. Your deficiency isn't dietary. Supplementation is going to be a slow way of raising your levels anyway, hence injections as the first course. If you really can't do that then you would need high dose oral (>1000mcg per day - and even that doesn't work for about 30% of people.

Whilst the IFAB test is very specific to PA it isn't very sensitive which is a fancy way of saying that a negative does not rule out PA but a positive result is a very good indication that you do have PA. There is a new test measuring gastrin levels but this is not yet widely available. That test is much more sensitive.

[KBird01]

Nothing to add re advice other than what's already posted, but just to say as a self-employed person, I also nearly lost my livelihood over this, not to mention several years of my life I'll never get back.Please push this. You deserve your health and to make a living. It's likely you may feel worse symptoms for a while, but if you don't take action, your health will inevitably decline.

[Ipsofacto01]

If you can afford it, I would recommend contacting the B12 and iron clinic at the Nuffield in Cambridge. I'm so sorry your GP is so clueless.

[Plumpudding]

My fear of B12 injections is so high. I contacted someone who does beauty and arranged a Ln appointment for hydroxocobalamin injections £30 but I'm terrified of a reaction, I have to work I'm self employed there's no sick pay I will lose my contract instantly if I don't go to work. I'm not afraid of injections could even give myself them. It's the getting worse. How would I survive without money coming in. I have a mortgage to pay. Everything has gone up recently. Being self employed with this is quite possibly the situation I could be in

[BeachArt in reply to Plumpudding]

I can understand your fear about injections, however, without them your health will continue to decline and you'll be off work anyway. Or worse! I don't wish to sound melodramatic, but it's true. Not everyone has the reversing out problems. I didn't. I had all manners of symptoms, none of which got worse before better. It was a rollercoaster ride to get to where I am today, but that is the road to recovery: it is up and down, rather than linear. But at no point did my symptoms worsen. They eased, then they came back, then they eased, and so on, but that was due to me finding out what frequency of injections was needed, and also figuring out what my limits were. I'm now 8 years into self injecting. My health is good. I work, I go to the gym, I socialise, I have fun. Basically I have my life, and my health back.

[GentleFlower]

hello Plumpudding My GP was literally killing me and they were a partner at the surgery I was at. They starved me of B12 injections because the felt my levels were too high. Even though they wrote to a Haemotology department at my local hospital @ Barnet Hospital who told them never to stop my injections. They ignored this and all the medical history on my files as well as my high intrinsic factor results etc. You can die from not having B12 injections when you have Pernicious Anemia and you definitely sound like you have it but you need someone/a GP or haematology consultant referal if GP cannot decipher your blood t test results or symtpoms. Before people got the B12 injections they would die and I have felt I was at deaths door just like you described Only until my family kept pushing me to go back to GP. Luckily a different partner at the practice who knew about it sent for an urgent injection and blood tests to find my levels not just for B12 but also iron were now getting affected as I struggle with both B12 deficiency and iron deficiency I have the worst of it. Fast forward I never got loading doses just drip feeding every three months from April 2024 to November 2024. I never recovered always tired and disorientated amongst many symptoms and I do use a wheelchair as one on the non reversible neurological symptoms for a late diagnosis Yeats’s and years back. Now I get weekly injections from the hospital consultant and currently 6 weekly injections from GP to be confirmed but this is only because I’m pregnant and my Haemoglobin levels will not rise they are 102/10.2. I don’t know if you are male or female but because I’m pregnant they cannot just leave it but I still feel like death because my body hasn’t yet recovered from the 1 year loss and my consultant knows I cannot overdose aaa she told me but wants to tread carefully for the baby’s sake by trialing weekly injections for 2 weeks.

BOTTOM LINE IS PLEASE CHANGE GP, KEEP GETTING PRIVATE BLOOD TESTS IF YOU NEED AND ASK GP TO REFER YOU TO HEAMATOLOGY FOR THE CHALLENGES YOURE FACING WITH NON ABSORBANCY OF B12 THAT LASTS FROM FOOD YOU HAVE! THAT IS YOUR RIGHT. DONT TAKE NO WE WILL GIVE IT TIME FOR AN ANSWER. TELL

THE GP YOU NEED URGENT REFERAL AS YOU FEEL LIKE YOURE DYING SOMETHING IS NOT RIGHT.

I have sued my previous GP for negligence! And it is not my problem if they don’t look up NICE Guidelines or read up on B12 deficiency or PA. They are the GP and gettt paid to do a life saving job and I would have died end of. A lot of people are suffering like this and probably dying of heart failure etc so please help yourself by changing GP. Good luck. Gentle flower 🌸

[Nackapan in reply to GentleFlower]

I'm sorry to hear this.My daughter was also a wheelchair user due to undiagnosed b12 deficiency and megobolastic anaemia for years.

So many other tests but not B12 !

She on a heavy steroid drug for P.o.ts .

After too long trying without.

The National Hospital in Queens Square helped her after I got her referred there .

Long story.

The drug enables her to walk now .

I'm glad you at last have the correct treatment.

It is early days .

You can and will improve.

If may take years .

[Nackapan in reply to GentleFlower]

If you are a PA member please submit your medical story .

I've done this about mine.

My daughter can't face it yet as so involved and emotive .

The only court we were in was for a refused PIP benefit when she lost her teaching job and a wheelchair user.

0 points given on 2 occasions.

Court awarded 5 points.

Needed 9 .

Never again.

The injustice still grates .

[Myoldcat]

I understand your fear as I am also self employed and had to go through the 'worse before better' phase. But your choice is either to get effective treatment now and manage the reversing out symptoms, or inevitably become too unwell to work at all. I was almost at that point. Please also be aware that low B12 affects our mental and emotional state, and we may be more vulnerable to negative thinking. Like others here, I urge you to start the healing process as soon as possible to minimise further nerve damage.

[Granny2024]

Hi, you do NOT have pernicious anaemia.

You DO have MEGALOBLASTIC anaemia and you need treatment for it a.s.a.p.

Get yourself back to the Doctor, ask for a B12 etc bloodtest. (Check on the notes on here they tell you exactly which bloodtests to ask for) then get yourself to the Iron Clinic in Cambridge and get treatment. My husband had enlarged red blood cells, it is a serious condition which affects your quality of life severely and shortens your life span, so get treatment of B12 injections asap…..

You could try and tell you GP you have megaloblastic anaemia but good luck with that, it took us three years and reams of printed out research to get him diagnosed, but a bloodtest before starting B12 injections (showing enlarged red bloodcells) and a bloodtest after starting B12 showing normal size red bloodcells convinced them in the end.

That is only the start of the battle, once they see your red bloodcells are normal, they change treatment to once every 3 months, so go to Cambridge Iron clinic and get proper treatment….

Thinking of you ❤️❤️❤️❤️

[WotNotAgainM8]

Hi, sounds like you may have PA (Pernicious Anemia) since your body is not extracting B12 from food or supplements as you may not have IF (Intrinsic Factor) which extracts B12 from food. I have this issue and the only way I can obtain B12 is through regular injections of the correct medication into my body. Has your IF function been checked?

[Plumpudding in reply to WotNotAgainM8]

I tested negative for intrinict factor

[Sleepybunny in reply to Plumpudding]

I've read that PA (Pernicious Anaemia) can be hard to diagnose.

A negative result in the Intrinsic Factor Antibody test (usual test for PA) does not rule out PA.

There are other tests that can help to diagnose PA. See thread below.

healthunlocked.com/pasoc/po...

[WotNotAgainM8]

Try injecting more frequently, my jags are every 4 weeks - that works for me.

[Plumpudding in reply to WotNotAgainM8]

I'm not on injections

[WotNotAgainM8]

You need to be on injections, as pills won’t work

[Sleepybunny]

Hi,

I left some useful links on the forum thread above yours.

I'm assuming you're in UK.

"The gp is useless."

Wrong ideas about B12 deficiency

Many forum members have met health professionals who lack understanding of B12 deficiency.

Misconceptions about a B12 deficiency

(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...

Diagnosis and Treatment Pitfalls

(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)

b12-institute.nl/en/diagnos...

I left links to help those in UK struggling to get adequate treatment/diagnosis in these threads below.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po....

Some links I post may have details that could be upsetting to read so you may want to have someone supportive read through them with you.

Help for GPs

Might be worth pointing some of these out to your GP.

1) PAS (Pernicious Anaemia Society) website has a page for health professionals.

They can join PAS as affiliate members, no charge.

pernicious-anaemia-society....

PAS have webinars on aspects of PA and B12 deficiency.

pernicious-anaemia-society....

PAS have videos of past PAS conferences

pernicious-anaemia-society....

2) Has your GP heard about CluB - 12?

club-12.org/

It's a group of doctors and researchers who are looking into B12.

They have regular zoom meetings and have hosted a conference in UK.

Website mentions a conference in France June 2025.

3) Good articles to pass to GP

B. Wolffenbuttel wrote an article for PAS in Jan 2024.

Only One Chance

pernicious-anaemia-society....

Search for "Wolffenbuttel B12 deficiency" to find other articles he's written, including one for Mayo Clinic in US and one for BMJ (British Medical Journal).

His most recent article was an overview of treatment/diagnosis which your GP might find useful.

Search for "Wolffenbuttel 2024 b12 deficiency overview" to find it

In my personal opinion he's one of the few doctors who understands B12 deficiency.

Nature.com recently published a good article on management of PA and the new NICE B12 deficiency guideline.

Search for "Nature 2024 NICE diagnosis management" to find it.

4) B12d.org organise online talks about b12 deficiency

b12d.org/event/

I'm not medically trained just someone who suffered for many years from unrecognised and untreated B12 deficiency.

[Iheartb12]

I know we can ll relate to your situation, feeling like you're going to die, poor medical care and worrying about how to maintain work and other responsibilities while going thru this.

I had megloblastic anemia for over 20 years along with low b12 and nerve pain, and a whole list of other symptoms. Never got a diagnosis all those years. I tried all the stuff to feel better, not knowing I had PA. I also felt much worse while eating animal products which is why I went vegan for 5 years. Looking back i think I felt so much better during that time cuz I was supplementing with sublingual b12. I had an injection here and there over the years but they always made me feel so much worse.

Well, over 20 plus years my nerve pain and exhaustion got exponentially worse until I was bedridden 80% of the day and got let go from my job. Doc kept saying I was fine but I knew I was dying. I learned about PA and got my own blood test, took to doc and between positive ifab, low b12 and chronic megloblastic anemia I got my PA diagnosis.

Doc wouldn't prescribe me enough b12 so I ordered online and started with 3 injections per week. They made me feel much worse but I persisted. 2 years later as far as PA goes, I consider myself recovered. I had to go to physical therapy to address the pain I had either from PA or being mostly bedridden for years. It was the hardest time of my life. Since starting injections 2 years ago I've had to address many unrelated health issues and it was hard to figure out what was what because the injections are really hard on your body and often make you feel worse before better.

I share this to give you some hope. I suggest you get the intrinsic factor antibody test whether it's thru your doc or privately. I'm in the US so I was able to order the test online for $60. A negative doesn't necessarily mean you don't have PA, you should use your other symptoms to guide you. Either way, with b12 that low and not increasing with supplements and dietary changes, you need b12 injections. I'm sure others here have posted resources for you to review.

The injections are hard in many ways but necessary. You will continue to get worse physically, cognitively and mentally if you don't manage this now. I never want anyone to go thru what I did. I understand the challenges with work. I got let go.

2 years this month of injections, and having finally gotten thru some other issues I was trying to figure out (hiatal hernia, gastritis and hyperthyroid) I am walking 10k steps a day, doing well at my new job, taking care of my house and overall doing well. I had a lot of setbacks, even recently, but I'm happy I went thru all the pain to get my life back.

I wish you well.

[Showgem]

Is there another GP at your surgery you could see?The GP who told you this is unbelievably wrong in not giving you loading injections with this very low blood test result.

If you don't start injections very soon you risk permanent nerve damage which could mean not being able to walk, eyesight problems, dementia and much more. Very soon you will not be able to do your job, this is what you need to be scared of, not the injections.

You could write a letter to the surgery stating the information you have been given on here by others and ask that they start giving you injections immediately, telling them that you are not vegan or vegetarian so there is no other reason other than PA why your b12 is so low. That if treatment is withheld you will hold them responsible and if permanent nerve damage occurs that you will sue the surgery. Ask that this letter is given to the practice manager and a copy is saved to your health record.

If you haven't done so join the pernicious anaemia society and they will help you.