Pernicious Anaemia Society
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Next Steps and Recovery Outlook

I was experiencing severe fatigue and occasional depression for maybe a couple years and eventually peripheral neuropathy (pins, needles in hands and legs, a couple numb fingers on my right hand, and "MS hug"). The neurological symptoms came on over 5 months just prior to the diagnosis, and prompted me to see a doctor. I was diagnosed with B12 deficiency about 2.5 months ago. My out of range blood readings were HGB = 10.8 g/dL, HCT + 32.9 %, MCV = 108.2 fL, MCH 35.5 pg, MCHC = 32.8 g/dL, and subsequently B12 = < 60 pg/mL. I'm assuming that "< 60" is a minimum detection limit or effectively zero!

I also showed high BUN (36 mg/dL) and slightly high Creatinine (1.6 mg/dL), which is a sign of a kidney function issue. Can the anemia cause that or is it the reverse.

I am two months into my B12 shots. I started on Cyancobalamin through my doctor (daily for a week, then 1/wk for a month) then, having read a lot more about the condition, I switched to Methylcobalamin and have been on twice a week shots on my own, and will continue that until my symptoms stop improving. I got my Methylcobalamin B12 from Oxford Biosciences (I live in Cleveland in the US).

My neurological symptoms have been improving since I started B12 shots, slowly, but definitely. My right fingers are no longer numb and I can now button, at least my right sleeve, and the MS hug is less tight. Also, my energy level has improved a lot and my depression is no longer creeping in.

I am reading "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper, but I have two questions that I was hoping someone here with experience could answer.

1) Should I consider the neurological symptom improvement over the last 2.5 months a positive sign and something that should continue over a few more months? My neuropathy was happening unabated for 4.5 to 5 months before I started my shots. I've read that it can take 6 months before symptoms have improved as much as they will. I am hoping that the improvement is a sign that the myelin sheath is

2) Is it possible to diagnose my case as Pernicious Anemia based on symptoms (or lack thereof) or should I have a test done for IFAB? My relatively ignorant doctor (former doctor) asked me why I even needed to know since "either way, you'll have to take the shots for life." I said "Well, if it's gluten intolerance that's causing the lack of B12 absorption, I'd like to know that." I refrained from adding a ", you dumbass" to my statement. :)

Anyway, I've done a lot of due diligence on this bu have not come up with great answers to the above questions and any input from this impassioned group would be a huge help. Thanks so much, Al

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Hi AirAl

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.

Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

If you can get to see a doctor please also ask him/her to check your Folate level as this and B12 help your iron to make red blood cells and to function properly.

Sadly the IFA test is unreliable in that it gives false negatives in people with PA half the time. So a negative result doesn't mean that you don't have PA. However, a positive result is a sure-fire, 95% certain indicator of PA.

Treatment for PA and non-dietary vitamin B12 deficiency is virtually the same.

The symptoms of PA are the symptoms of the B12 deficiency that it causes. If the cause isn't dietary then it is an absorption problem so you need to find another way of replenishing B12 initially. Most absorption problems aren't treatable but a few are - notably h pylori infection - which would mean that once that has been dealt with you would be able to absorb B12 from your diet so wouldn't need maintenance shots for life.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 46 years.

Incidentally I have been on cyanocobamalin B12 injections since May 1972 which pre-dated the current hydroxocobamalin and Methylcobamalin versions.

I wish you well

.

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Thanks Clive. My Folate was high when I had the blood work done, possible because it was not in use. I have been taking some orally to ensure I have enough for the B12 and Folate to work together.

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I'm a bit hazy on the details but the raised creatinine may have been related to raised MMA rather than a sign of kidney problems. I was diagnosed whilst in hospital after a fall that required a pinned ankle and going back through records afterwards my creatinine was very high which I think was what prompted looking at MMA and B12 and lead to the diagnosis.

People respond very differently to different types of B12 - and although there is a lot of hype about methyl being better because it's a form used in cells - the process of getting it from your cells to your blood involves replacing the methyl component with protein so it can get into the cell and then stripping it and recombining it with methyl in the cell so no real evidence that it is any better. It's also one of two forms used in the cell - the other being adenosyl. Some people really don't find any benefits from methyl - and some even find it makes them feel quite ill ... but others do find it works well for me. It works well for some of my neurological symptoms but does nothing for my neuropsychiatric issues so I actually use a cocktail of different B12s.

The test for PA is not very sensitive so gives false negatives 40-60% of the time which basically means that even if it comes back negative it doesn't rule out PA ... and that means actually diagnosing PA as the cause can be quite difficult ... so on that one your doctor probably wasn't as stupid as you thought. However, different absorption problems have different consequences so it can be useful to know which absorption problem you have. Personally I've never gone down the route of trying to find out what my absorption problem is exactly as the treatment really is the same ... and idea of repeating the test over and over in hope of a positive result seems to me to be a bit of a journey into madness.

In the UK the recommendation is to continue with loading shots until your symptoms stop improving if you have neurological involvement.

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Thanks Gambit. I was thinking more of testing for other possible causes, not just PA (though a positive PA test could be a quick answer). If it's an upper GI / gluten tolerance issue that is causing the lack of B12 absorption, additional tests for that would have value. If it was gluten, a diet change might preclude the need for shots. My doc was implying that no testing of any kind had value, which was logically untrue. The Cyan comment is interesting. I had read the opposite somewhere so will need to double check that source. Thanks.

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Also, I figure I'll get the kidney presursors tested again at some point. Hopefully that chicken/egg doesn't bite me in the arse. ;)

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Hi AirAl. I think you showed outstanding restraint...'you dumbass' could equally be applied to many of the doctors we hear of in the forum. Sadly. I like to think that there are good ones out there and that their (lucky) patients never have to arrive here.

So...to your questions...

1) Yes, the improvement to your neurological symptoms is a good sign and you can expect that improvement to continue (assuming that all your neurolgical symptoms are due to B12 deficiency and that you don't have an underlying neurolgical condition). As Clivealive says, it's not easy to predict rates of recovery because we're all different, have different symptoms, and it depends on how,long the deficiency was present prior to treatment (some here remain undiagnosed and untreated for many years).

And please take heart - symptoms can continue to improve, even after six months. One member recently reported that their neurological symptoms had resolved after over year of every other day injections. So six months is a conservative estimate (again, we're all different). It's thought that improvements may be possible for up to two years further to the commencement of treatment.

It's good that you have been injecting B12 more frequently than your medic thought necessary (a mistake made by many UK doctors too). In the UK, injections following loading doses are every other day until no further improvement (something you are aware of - but not many medics, it seems - wherever they are). It's also worth noting that the one size fits all prescription regimes don't fit many people at all - most here need much more frequent injections than the maintenance regime of eight or twelve weeks - some have to inject every day, on a permanent basis, to get and stay well.

Here are the results of a poll that you might find interesting - and illuminating - about injection frequency:

healthunlocked.com/pasoc/po...

So, the right frequency for any individual is one that allows for injections before symptoms become troublesome again (worth remembering when you are adjusting frequency later on - the aim being to time injections so that you have them before symptoms reoccur).

2) About the IFAB test. It is worth having done because if you test positive, you'll know that you definitely have PA. However, 40%-60% of those with PA test negative for IFAB's, so testing negative does not rule out PA - you could still have it.

There are many potential causes of B12 deficiency (PA being only one) and your right to want to try and pinpoint the cause of your deficiency because each cause may have different solutions (in addition to the B12 injections). For instance, IBS, Coeliac or Crohn’s disease, heiobactor pylori (a gastric bacteria), tapeworm, gastric or intestinal surgery, certain medications...to name but a few.

Ideally your doctor should want to identify the cause of your B12 deficiency, in particular because some are 'fixable' (i.e. heliobactor/tapeworm infection/infestation) and generally because if there's an underlying condition (Crohn’s/Coeliac disease) this may require additional treatment. Obviously, if the cause is 'fixable', then shots are not required for life. If it's not, the they are (and this accounts for the majority of B12 deficiency cases.

Back to the IFAB test - when all other potential causes of B12 deficiency have been ruled out and if IFAB test is negative, UK BSCH diagnostic flowchart points to a diagnosis of antibody negative Pernicious Anaemia (AbNegPA). And that's a long winded way of of answering your question: B12 deficiency plus symptoms can equal a diagnosis of AbNegPA - but only if and when other potential causes for the deficiency have been ruled out.

Having said all that, it's not always possible to identify the cause of a B12 deficiency and whilst it would be reassuring to know why it's happening, the most important thing is that you get treated for that deficency - and that's happening. Many here have been unable to get either a diagnosis or a cause for the deficiency (when it is diagnosed)...so for many here, getting B12 injections at a frequency that enables us to get and feel well is what we have to settle for...the cause becomes a bit of a moot point if recovery is happening 😉😀.

And something else - a note of caution about the methylcobalamin from Oxford Biosciences. If this is still supplied in a screw top bottle in a white crystal form which has to be mixed with saline, then I would exercise extreme caution in using this (In fact, I would not advise anyone to use this for injection purposes). Once the saline is opened it is no longer sterile - nor are the methylcobalamin crystals that it's mixed with. This means that the solution to be injected is not sterile and is not of injectable quality. And the longer this is stored and used for multi-dose purposes, the greater the risk of the methylcobalamin liquid becoming infected with bacterial organisms (because it's not sterile or protected by antibacterial agents - bugs can grow. So...I'd never advise anyone to use this for injections.

The best and safest option for injectable B12 is to always use single dose ampoules.

About methylcobalamin - there's much written on the internet about this being the 'best' and most 'natural' form of cobalamin - not true. There is no superior form of cobalamin and whilst a minority of people do benefit from using methylcobalamin, the majority are perfectly fine with Cyanocobalamin or Hydroxocobalamin. So if you can’t find an alternative supplier of methylcobalamin single dose ampoules, might be worth trying cyanocobalamin or Hydroxocobalamin - you'll probably find that these work equally as well.

So...lots of words 😉😀. See that you're reading and learning (hurrah) so I'm going to post you some links below with information that will help you in your B12 journey to wellness (will also help you to spot when doctors talk nonsense to you and give you the evidence to make your point). I'm also including the UK BSCH Cobalamin and Folate Deficency diagnostic and treatment guidelines since, different treatment regimes apart, there's much in there that you'll find useful and illuminating 😉. And everything I,be said above can be reference back to these documents - sorry, not enough time to sort and insert in the relevant places above but the links are annotated so you'll be able to spot things easily. Looks like a lot of links but most are only one page long - and all are well worth the read. Here come the links:

b12researchgroup.wordpress.... (Serious Caution Note about the use of Oral and Sublingual B12 Supplements)

bnf.nice.org.uk/drug/hydrox... (BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

pernicious-anaemia-society.... (PAS Symptom Checklist)

stichtingb12tekort.nl/weten... (BSH B12 Deficiency / PA Diagnostic Flowchart)

onlinelibrary.wiley.com/doi... in Haematology (BSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)

onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord – Immediate Treatment with B12 Injections)

stichtingb12tekort.nl/weten... (Problems with Serum B12 Test)

stichtingb12tekort.nl/weten... (Testing B12 During Treatment)

stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to Know Before Seeing GP)

stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)

stichtingb12tekort.nl/weten... (B12 Deficiency and Intrinsic Factor – Can Be Negative and Still Have PA)

stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

bloodjournal.org/content/bl... (Haematologist B12 Treatment Review March 2017 – Includes Advice No Reason to Advise Against Self-Injection/More Frequent B12 Injections)

stichtingb12tekort.nl/weten... (B12 Deficiency and Neuropsychiatric Symptoms)

gov.uk/drug-safety-update/n... (Low B12 - Nitrous Oxide Contraindications)

ncbi.nlm.nih.gov/books/NBK2... (Gastric Autoimmunity: Heliobactor Pylori)

stichtingb12tekort.nl/weten... (B12 Deficiency in Children)

stichtingb12tekort.nl/weten... (Methylmalonic Acid – MMA)

cdc.gov/nchs/data/nhanes/nh... (Homocysteine Testing Information)

ncbi.nlm.nih.gov/pmc/articl... (No Superior Forms of Cobalamin)

mayoclinic.org/drugs-supple... (Vitamin B6 - Pyridoxine - Safety)

umm.edu/health/medical/altm... (Drugs that Deplete Folic Acid (Vitamin B9)

umm.edu/health/medical/altm... (Drugs that Deplete Vitamin B12)

So...good luck AirAl...post again if you have any more questions or need any support. Lots of lovely folks here to help. Let us know how you get on.

👍

P.s forgot to say...your B12 levels was very low (understatement - unrecordable) so,it’s possible that your symptoms are due to B12 deficiency alone. However, there are cross-over symptoms between B12 deficiency and many other conditions (I.e. hypothyroidism and diabetes to name but two) and it's therefore possible that there might be other underlying causes for your symptoms. So...if some of your symptoms remain problematic it would be wise to ask for specialist referrals to rule out other potential undelying causes...

Neurologist to rule out underlying neurolgical conditions

Gastroenterology for ongoing GI symptoms (it's also usual for those with PA to have (at least) an endoscopy

Rheumatology - it antibodies are raised (other then IFAB) or there are joint problems

Endocrinology - thyroid issues etc. (If these are identified as a potential problem)

And so on... 😖😉

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Wow. A thousand thank you's FoggyMe! This place is a godsend. Tons of valuable information there and I appreciate every word and link. :)

The bit on the Oxford Biosciences source is notable. It IS still the screw cap. I did not realize that the Methyl molecule needed to be removed too until Gambit's post. The bacteria risk is also concerning. Back to the drawing board on that. Ugh.

Regarding recovery, that is good to know. I had the neuro symptoms for 4.5 to 5 months, but I can't be sure how long I've been B12 deficient. I've had abnormal fatigue and depression for maybe 5 years, above and beyond the "normal" fatigue and depression that age and life can bring. Ha ha.

Thanks so much! :)

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No problem AirAl...I was where you are three years ago so I know just how you feel...as will all the folks here.

We have members from across the USA so it might be worth putting up a new post to ask for suggestions about how to get B12 supplies in the states (I believe some go to compounding pharmacists having obtain prescriptions from alternative practitioners (it's late, the name escapes me 😖). Useful to insert USA in post title so that it will appeal to the right folks 😉).

I believe a German company called Mycare ships Hydroxocobalamin to the USA - but check with them to make sure I've got that right. Here's a link:

mycare.de/en/online-kaufen/...

Who would have thought that such a thing as vitamin B12 could be so fiendishly complex...and tricky 🙄😀.

Oh and...in case you haven’t spotted it, I've added a p.s. to my reply above (for safety's safe).

Good luck 👍

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Having had excellent advice regarding B12 - I would like to suggest having your thyroid correctly tested - TSH - FT4 - FT3 & Anti-bodies TPO & Tg. Symptoms of low thyroid and low B12 often co-exist and can also be the cause of fatigue and depression. I mention this as you are trying to find a cause for your B12.

I have Hashimotos - Crohns and B12 issues 😊

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Good to know Marz. My doctor said my thyroid was fine, but I'm not sure what test measurement told him that. My son and two brothers have hypothyroidism, it runs in the family.

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So if it runs in the family then you certainly need to know how your thyroid is behaving.

Sadly the NHS usually test the TSH - Thyroid Stimulating Hormone - this comes from the Pituitary Gland and tells you diddly squat about how the Thyroid is performing. It tells the Thyroid to produces T4 - this is a storage hormone and it needs to convert into the ACTIVE thyroid hormone T3 - which is needed in every cell of your body.

So the tests needed are TSH - FT4 and FT3 - the latter is rarely - if ever tested by the NHS - and yet it is the most important result of all. Yes we should be asking why - fortunately I live in Crete so when I was diagnosed with Hashimotos back in 2005 ALL the tests were done - including a scan :-)

To rule out Hashimotos you need to have BOTH anti-bodies tested - TPO & Tg. Again the NHS only test one and so many people are missed. I have been a member of Thyroid UK here on HU for almost 7 years and read often of members who discover after 20 years or so that they have Hashimotos. It is an auto-immune condition and sadly Docs do not understand auto-immunity and so stay away from learning about it :-)

Private Testing is used by 1000's on Thyroid UK as the NHS is failing them so badly so check out the link below for Home Testing Kits so you can learn the FULL story ...

thyroiduk.org.uk/tuk/testin...

You can click onto my Username above and read my Posts - Replies - Bio to check me out ! You are legally entitled to have copies of all your test results - so give the surgery a call and say you will be around in a couple of days to collect them. Then you can see what has been tested and what has been missed !

When Doctors say 'fine' they mean in range - but it is where you are in the range that is so important. You may have a Pituitary Gland that secretes TSH and a Thyroid that secretes T4 - but the most important thing is that it converts into T3. When you think that over 13 trillion cells in the body have a receptor for T3 - and it is low - then there is simply not enough T3 to go around and things begin to go wrong ! So without testing the T3 it is impossible to say your thyroid is fine.

thyroiduk.org

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Great series of posts here, thank you everyone! So useful to read the stories of others.

My serum B12 tested at 68 pmol/L, so pretty low too. It's taken 3 months for my neuro symptoms to almost be gone (tingly feet and hand). I was injecting B12 every 2nd day till my neuro symptoms were almost gone; now I'm injecting weekly, and supplementing B12 orally daily when I don't inject.

I've been injecting cyanocobalamin (am in South Africa and we can't be prescribed anything else for injection). It's nice and cheap, and seems to be working great for me.

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Hi Katherine. Welcome to the <70 club! Ha ha.

That's great to hear about your neuro symptoms. How long did you have your neuro symptoms before being diagnosed?

I'd been doing twice weekly shots but am now switching to every other day to make sure I get enough.

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It's a relief to find other <70s... I felt like an outlier!

My neuro symptoms started in January this year. My case is a little complicated, in that I have MS (thankfully not particularly active MS). My neurologist says I had an MS episode in January, though they couldn't pick up any active lesions on my MRI. So, which of my symptoms (eg lack of energy) were due to MS and which to B12 deficiency, I don't know (and probl never will).

I'm surprised that my symptoms only started in January, given how low my B12 was when they tested in mid-Jan. (I had been running 10km 3x week up to the end of the year, so I was pretty healthy.)

I've been rather (pleasantly) surprised by the speed of my recovery, given how low my B12 was. I'm still not 100%, but I think I'll get there in the next month or so.

I found it helped when I went onto injections every other day - hope it does the same for you. (Fortunately my GP was happy to take my lead on injection frequency, which I got from the British Haematological Society guidelines).

Good luck, and keep me posted!

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I'm relieved too. :) Not sure I've seen any as low as us.

I was wondering about MS, especially since I have the "MS Hug" symptom. Did you have MS Hug? I know Anemia can come with MS, but they don't seem to have a handle on the relationship from what I've read.

I was also wondering how long I've had this with a <60, especially since the liver can store 3-5 years worth of B12! Thinking back, my energy level has been sapped for maybe 4-5 years. I was mis-attributing it to age (55) and my mostly sedentary job (IT). Very scary to think about what would have started going wrong had I not caught on.

So you only had neuro symptoms for a couple months. Kudos for being on top of it. I have some back issues that lulled me into not jumping on the pins and needles right away. Hopefully, everything gets back to normal. It's very encouraging to know that your neuro has improved. I would think that your youth (from your picture) and overall health (the running) contributed to your fast recovery. That is great.

Glad to hear that about your doctor. I'm looking for a new one, as mine was pretty inflexible with dosing. I'm sourcing my own B12 and will dose myself by how I feel until I find a better doctor. It does seem like Western Europe is way ahead of the U.S. on this.

Best of luck to you too, and I'll be pulling for medical science to make further strides on MS! It seems like a new huge discovery happens every week or so lately.

-Al

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Hi I live in Pennsylvania and I ordered my B12 from Canada. I got them in a little over a week and was very happy with their service. Good luck and let me know what you thinkof their service if you choose to use them.

buy-otc.com/index.aspx

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Thanks jlee. Will check it out.

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Pretty good price. Thanks again. I might get some and alternate between Methyl and Cyan shots.

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Please let me know if see any difference between the two. Glad I could help.

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My son’s B12 was low and his folate high. A genetic test (for the MTHFR polymorphism) showed that his body has trouble using folic acid so it just builds up. He’s now taking the active form of folate. If you’re in the U-S, folic acid is hard to avoid, unless you buy organic flour products, so your potential issues may be more than just gluten-related. FYI, if you think you may be sensitive to gluten, get the test before you make the dietary change and, even then, it’s not all that reliable. The more invasive test has limitations too. My ex-husband keeps insisting our daughter get that biopsy before he’ll believe her, but that means she has to go back on gluten and get sick all over again. Her doctor says it’s not worth it when the remedy won’t change. It took her six months to start feeling better.

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Trish: Tough situation when your kids are sick. :( My son has Hypothyroidism, diagnosed at 14, and it was heartbreaking for him at that age.

Great point on Folate. My Folate was high (67.1 ng/mL) when my B12 deficiency got diagnosed. I believe it was partly due to the Folate not having available B12 so it wasn't able to do its thing. In about a month, I'll get it tested again and report back on what B12 dosing has done to it.

FWIW I use this Folate, which sounds better than Folioc Acid (I take a couple pills a week): vitacost.com/vitacost-bioav... "Vitacost Bioavailable Folate offers a better way to obtain folate. It features Quatrefolic®, a scientifically advanced, active form of folate that’s complexed with glucosamine for better solubility and bioavailabilty than other available forms."

Good luck.

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