Pernicious Anaemia Society
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B12 deficiency - more frequent injections

Hi all, newbie here :-)

I was diagnosed with b12 deficiency in January after months of feeling rotten. Initially I was pleased it was 'nothing serious' and could be sorted with injections. Levels were below 150 at diagnosis, no idea of the exact figure as test didn't show them. Also had slightly low ferratin levels. I had my loading doses early Feb and expected to feel normal again. Had my 4 Week blood test and told by GP that at 921, my levels were fine and I'd have 3 monthly injections.

Unfortunately, by early April I was feeling awful so asked if I could have injections more frequently. After a lengthy discussion with my GP, where she intimated I wanted them for a 'psychological boost' she agreed to give me 3 more loading doses and a retest after 4 weeks as she stated she'd have expected the post loading dose reading to be nearer 2000. She also said she'd test for pernicious anaemia. Got my blood test post 3 extra doses reading back which was low 800s so I was told I could have another injection, there was some confusion about whether it was a one off or what, so I booked to see GP. Saw her today, different GP, and if I wasnt so exhausted and ill I'd be fuming. She basically suggested it was all in my mind due to depression/low mood, suggested b12 tablets (!), PA test hadn't been done, dismissed my neurological symptoms saying i could walk so they didn't count and she said she couldn't prescribe more frequent injections as it had to be the GP partner. She also said my symptoms are all unrelated as they are all to do with different systems in the body so can't be due to b12 and that my test results were normal. Disputed the fact that test can show active and inactive b12 and that reading quite low after injections. She then cut me off by saying 'I'm ending this appointment here'.

I cried in the waiting room, and I am not a crier.

The fabulous health care assistant who'd earlier done my b12 injection said it was very unusual that my levels didn't seem to be 'sticking' and that it was unique among her patients. She also said that, having known me for years, knew I wasn't the type of person to be needlessly asking for meds, appointments or exaggerating symptoms.

Intrinsic Factor test has now been done and sent off (done 30 mins after having b12 - will this be ok? ) and i have another GP appt in a couple of weeks. My question is, how do i now deal with this? It's clear to me that, for whatever reason, I'm not keeping the b12 in my body and there's no way I'm going to last 3 months between injections. It's been less than 6 weeks since my last and i feel like I'm dying. I have a job, family, children and I'm struggling to do anything more than cope at work and collapse at home, and I only work a 4 day week. I'm worried that the damage will be permanent and I'm sick and tired of having to argue my case all the time - I just don't have it in me. I'm also worried that maybe it's something else as well?

Advice, help, tips or b12 injections all gratefully received!

Thanks for reading all the waffle btw x

33 Replies
oldestnewest

Welcome to the club of uniques ;)

I'm sorry to hear you're experiencing these issues with your doc, unfortunately it's something that's more common than should be. Are you in the UK? If so, the NICE guidelines for treatment of B12 deficiency with neurological involvement is alternate day injections until no further improvement then every couple of months:

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

Most doctors go from the non-neurological involvement which is loading doses then once every three months. Even though you show them the guidelines, very few agree to follow them - a few do, so it's worth a try, personally I got nowhere.

There's lots of info online, searching through the forums here and on sites like b12deficiency.info/ where they have templates for letters to send to the doc.

When I crashed after my loading doses last September I could hardly stand up and had the memory of a fish and gave up trying to get the doc to give me proper treatment so ended up ordering my B12 from Germany (cos you can't buy it over the counter here but can import it as it's just a vitamin) and have been self-injecting daily ever since.

Best is to try and get proper treatment from your GP but IMHO there's a point where it becomes such a struggle if they aren't receptive to it that taking control of your health is very empowering - sure, it's scary at first but it's just part of my daily routine now and especially more easy since I bought an autoinjector - I couldn't stand needles or the thought of injecting previously! Everyone is different, so being able to get the medication you need when you need it is not something that is blanket for all - even dogs get more B12 shots than people are usually given by the NHS!!

Of course I am not a trained medic, I am just a person trying to get themselves better and help others where I was helped before.

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Hi, thanks for your reply. Yes, I'm in the UK. I quoted NICE guidelines ( Had a screenshot or I'd never have remembered them, lol) but was told I didn't have neurological symptoms as I was able to walk. So the pins and needles, numbness, memory probs, vision issues, balance issues, weakness etc don't count, apparently. I said I thought treatment was meant to be done early to prevent damage to myelin sheath becoming permanent but it was like banging my head against a brick wall. She knew nothing about it tbh - when she told me I might need to swap injections for tablets if it is pernicious anaemia I realised she didn't have a clue.

I had thought about doing what you're doing and self injecting but when I looked online I just felt really confused about what to buy, where from how to do it etc. Any advice or links on that?

You're right about the dog thing - maybe I should see if our vet will give me a shot or 2? ;-)

It's a ridiculous situation, isn't it? I really appreciate the reply though as i feel so isolated and frustrated and confused by it all, especially when it's being suggested that I'm making it all up!

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Ridiculous is indeed the situation but I'm glad I found this forum and the facebook B12/PA group, although they kicked me out of there for mentioning MTHFR. These groups are all I've found and I used to respond to people but backed off lately cos, y'know, everyone's got opinions. I've started seeing that again so doubt I'll be posting much more but I've started here so owe you a reply!

There are plenty of youtube videos on how to self-inject, watch a few and you'll gather tips. By far the best option if you have the funds is get an autoinjector, it's 77 Euros:

unionmedico.com/product/sup...

No more sitting there with mind playing tricks, just press the button and it's in, wish I'd bought it right from the start. If you do go that route, choose the 3ml Syringes, I started off with 2ml but they don't give that option and I think it's made to hold particular sizes, it's a bit hard to understand. I started off on 1.25" needles as I'm not the thinnest person but I've 1" ones now and they're fine. I no longer inject into my thighs, it became too painful once my nerves started to wake up so I inject into my butt and it's so much better. Again, there's plenty of info online, search for "injection sites". You can inject subcutaneous ('subcut') but I don't find it works for me so I inject intramuscular ('IM').

You'll also want needles for 'drawing up', i.e. getting the B12 from the ampoule into the syringe. Some people use the same needle for injecting but you don't want to chance blunting it and they're only a couple of quid for 100 needles so not worth the risk IMHO. I use 1.5" green for this.

So, so far we have:

Orange 25G 1" for injecting

(or Blue 23G 1.25" but surprising how much bigger they feel than 1")

Green 21G 1.5" for drawing up

3ml BD Luer Lock Syringes. These are more expensive than the 'normal' 2ml ones but I'd never go back now, they screw in a little and are much easier than the non-Luer lock ones, but if budget tight then budget tight.

You can get all this from medisave.co.uk/ where you'll also want to get some alcohol swabs for cleaning if you haven't just showered/washed, not everyone does but again, so cheap, better clean than not, just wave your hands a bit over it to dry it first before injecting. I also got a pack of small round plasters cos guaranteed if I inject just before I have to go somewhere it'll be the time when a little blood comes out and I don't have the time to sit there for a minute with toilet paper waiting for it to stop (it's not painful, don't worry, just annoying).

You'll also need a sharps bin. Size depends on how much you're planning on injecting, they're only a couple of quid. Get a yellow one, they're colour-coded depending on what type of waste it is. Still haven't figured out how to get rid of mine yet, I've filled up a couple of large ones so far as I'm injecting so much (which some people seem to think is pointless but hey, works for me and that's all I care about).

Here's my list from my last order (without plasters, I've only used a handful thankfully!) - I ordered 2 lots of everything as the delivery is quite expensive, again if you're only injecting once a month you'll no way need the quantity I get:

BD MICROLANCE 3 NEEDLES GREEN 21G X 1.5" X 100

nd432£2.37

Ordered: 2

Shipped: 2

£4.74

MEDISAVE PROFESSIONAL 70% ALCOHOL IPA PRE-INJECTION SWABS X 100

MS100£0.95

Ordered: 2

Shipped: 2

£1.90

SHARPSGUARD ORANGE 7 LTR SHARPS BIN

DD473OL/SINGLE£1.99

Ordered: 1

£1.99

BD MICROLANCE 3 NEEDLES ORANGE 25G X 1" X 100

nd400£2.62

Ordered: 3

Shipped: 3

£7.86

BD LUER LOCK CONCENTRIC TIP SYRINGES 3ML X 200

309658£23.49

Ordered: 1

Shipped: 1

£23.49

I also highly recommend the SharpsGuard Ampoule Breaker from Amazon, it's £6.99 but saves potential glass in finger issues when breaking the ampoules open, and turns out it's handy for when going out and need somewhere to stash a couple of injections. If not, recommend using the wrapper from syringes or needles to protect your pinkies when breaking open the ampoule. The breaker takes a little bit to get used to but couldn't live without it, I hate breaking glass almost as much as I hated injecting before last summer (but not as much as having to fix anything electric lol!).

For the B12, I usually get it from versandapo.de/ - just search "b12 depot" and it's the first result. They do it in packs of 10 or 100. They've run out of the 100 at the moment so I just ordered my latest lot from mycare.de/

For cofactors there's varying debate between groups varying from "eat more leafy greens" to take 5mg of folic acid per day plus a decent B-complex. I have MTHFR and folic acid gave me a bad reaction, so did folinic acid, and after a while so did methylfolate - all types of B9. I now take some methylfolate a couple of times a week instead of daily. I was taking a B-complex but I ended up taking too much B6 and got toxicity so just have my B vitamins separately now and no B6 (10mg daily max). B-complex is fine for most people.

You also want magnesium, I have 100mg four times a day Doctor's Best High Absorption which I get from dolphinfitness.co.uk/ - used to get them from bodykind.com/ but dolphin were cheaper for bottles of 240, and both cheaper than I could find on Amazon. I also take this because I had Vitamin D deficiency, search google for vitamin d protocol if you've been diagnosed with that as it often goes hand-in-hand with B12 deficiency but you have to be careful when supplementing Vitamin D.

You also need to keep your potassium levels up, from food. I get through a litre of coconut water a day which I get in packs of six from Amazon. I had to get a tracker app as the price is so volatile, at the cheapest it's £12 for a pack of six but shot up to almost £19 today so I get it when it goes back down again.

I think that's it. That and lots of youtube watching!

You'll no doubt get conflicting advice from everyone, saying this person is right and this one is wrong - at the end of the day it's working out what works for you and that's only really through trial and error. There are many causes of B12 deficiency, mostly it's about getting your diet sorted, de-stressing as much as possible, taking care of yourself by exercising and so on. I'm nine months into self-injecting and gone from 3 years of practically bedridden miserable existence to getting out for an hour cycling the other day which admittedly wiped me out for the week but hey, it's getting there... slowly. Took a long time to get this ill so not expecting miracles, even though some in my family are lol!

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Oh, and regularly moisturise the area where you inject to keep the skin, well, moisturised.

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Wow - thank you so much for such a comprehensive reply. I'll have a look at the sites etc you mention when my brain is in gear a bit more. Not keen on self injecting as worried about doing it wrong into the muscle - have done my mom's insulin injections and was ok with that so prob can manage an autoinjector. Never heard of them before but sounds similar to my mom's insulin set up.

Thanks again for the advice, feel like I've got somewhere to start from now!

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No problem, it was a nightmare sorting it all out when I had brain fog and so much easier(!) in one list so happy to pass the knowledge on.

And I know it's impossible to not worry, you just get used to it after a while - I still have my doubts every time I inject but I just do it - I'd rather feel well than dwell ;)

All the best & hope you get it sorted - off to bed early now as up at the crack of dawn for more blood tests - had to write another letter to my GP today to get these, fed up of this continual battle with the NHS but when they only have a few hours of training on vitamins and there's millions of dollars of business involved in all the effects of lack of B12 then it's hardly a surprise they don't know how to treat something that isn't under patents any more. But that's another story...

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Unfortunately (?) there are many rules about disposing of a sharps bin in the UK. Mine is collected by the local district council, who also provide a replacement bin. This, however is for my diabetic treatment waste, so my GP is aware of it.

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Yeah I'll ask my GP at some point, she's totally aware of my self-injecting and is fairly supportive these days, every appointment is me just asking for a list of blood tests and her writing them down and giving me the form. She's seen me go from not being able to stand up and in a really bad state to fairly "normal" without any medication from themselves so kinda is a bit interested.

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5 mg of folic acid is prescribed for short-term treatment of those with a severe deficiency. After a couple of weeks on that, 400 mcg a day should be enough, especially if you’re eating a good diet.

Potassium only needs to be kept up during the first few weeks of B12 treatment, when a sudden burst of red cell formation can use it up. But it can’t hurt to take extra K-containing foods. It’s also a good idea to eat them if losing weight as hypokalaemia can be a problem then.

Magnesium supplements can cause diarrhoea in some people.

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Once you’ve had B12 injections guidelines say that B12 levels should not be tested again (the test results will be meaningless). Having said that your levels are still low, mine are around the 2,000 mark after injections (my GP also tested despite me asking him not to).

I think your intrinsic factor test will be affected by the injections you had so also may not give a meaningful result. In any event, the test is only accurate approximately 50% of the time. Lucky if yours says positive for antibodies but a negative result does not mean that you do not have PA.

I would certainly advise you to steer well clear of the GP you saw today. Maybe arm yourself with more information and see the partner GP to ask for further injections. If you have neurological symptoms, such as pins & needles/numbness in hands/feet, after loading doses (assuming you’re in the UK) you should have continued with every other day injections until no further improvement.

I recommend you join the Pernicious Anaemia Society and also read Martin Hooper’s book on PA/B12d (see amazon).

My GP didn’t treat me correctly initially (no loading doses given) and then every other month injections. When I explained that exhaustion kicked in weeks before the next injection I was offered monthly injections. I now supplement these by si on a weekly basis and 3 years after diagnosis feel fit and well.

Hopefully someone will be along to provide links to guidelines.

Good luck!

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Hi, thanks for your reply. I fully intend to avoid that gp, trouble is, there's only the one 'partner' gp and she's pretty unsympathetic about everything unless she's had personal experience of it. Have already quoted a lot of the guidelines but been fobbed off - seeing a long term locum for next appointment who the healthcare assistant suggested might be sympathetic so I'll see how I go. None of them mentioned neurological symptoms to me, only after doing research did i realise i have them and should have more regular injections. When i raised it today I was told as i could walk the neurological symptoms weren't severe enough to count ( see above). I'm going to take my husband to the next appointment, he is having to take over all the stuff at home i can't deal with, watches me fall asleep on the sofa after work and recently has had to pick me up off the floor after a couple of falls. Maybe they'll realise I'm not just 'a bit tired!'

Will join the PA society as suggested and look at that book when I'm a bit less brain dead. Just hope my GP will offer monthly injections as I thin that would make a huge difference.

Fingers crossed!

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The guidelines do not mention a sliding scale of severity when deciding on treatment!

Once you have full information (and maybe your husband can help by reading the book and the PAS website) you can decide on the best approach. Anything from a complaint to the practice manager to taking matters into your own hands by sourcing your own B12 and self injecting, as many do on this forum.

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Oh poor TiredMomma - been there I'm afraid. I have cried - got angry - been desperate all to no avail. gp remained stony and would not budge from 3 monthly. Lo! I found a neurologist who looked at my bloods - B12 was 77 - and said my gp was cruel not to have given me more b12. The word CRUEL was music to my years and now with the neurologists backing I have a b12 every two weeks. Now when I see the GP in the waiting room it is me that has a stony face. Hang in there TiredMomma

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well, having had the test so soon after supplementation means that there is a significant risk of getting a false positive which your GP will probably take as meaning you do have PA ... which is probably the result you want but what a colossal waste of money.

Sorry that so many doctors are so unaware of B12 and so keen on spouting a load of ignorant twaddle when it comes to B12.

B12 is used in a large number of steps in some significant key processes that go on in your cells and as a result it's effects are wide ranging and do affect the whole body.

The rate at which kidneys remove B12 does vary considerably from one individual to another. When hydroxocobalamin was first introduced as the treatment of choice in the UK it was administered monthly for maintenance but then it went to two months and now it is 3 months but without any scientific background for the change - there was a study that showed that on average hydroxo is retained 2x as long as cyano but the same study also made it quite clear that there was signficant variation from individual to individual and some retained cyano longer than hydroxo.

Serum B12 levels measure the amount of B12 in your blood but don't actually tell you what is happening with B12 in your cells, which is where it really counts. The BCSH guidelines don't recommend repeating B12 levels post shots unless its anticipated that levels are low. Well done to the first GP for recognising that 800, 4 weeks after loading is a low figure. Ideally treatment should be based on symptoms rather than serum B12 levels.

My symptoms start to return within 24 hours of a shot - this isn't because my levels are depleted but because the injections mean that I now need really high serum B12 levels - which is what happens for many of us. I do find that very high dose supplements can work quite well for me. It took me about 15 months after diagnosis to figure out how to keep my B12 levels where I needed them - I had decades of depression and anxiety and that finally went when I got levels right.

Contact details for the PAS

pernicious-anaemia-society....

pernicious-anaemia-society....

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Hi Gambit62 for very personal reasons do you know where I could find the study you mentioned about hydrox/cyano retention comparison?

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Think it is referenced in the NICE guidelines but that doesn't necessarily mean you can get to it as a) its very old - pre-digital and b) even if it is available digitally it may still be behind a paywall.

I have this book marked which may the study - or something related - but appears to be behind a paywall

academic.oup.com/ajcn/artic...

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Thanks Gambit62 even just the summary almost says it all. I wonder if my doctor has an "Oxford Academic account" :)

I really appreciate your help.

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Thanks for that ready helpful post, especially the mention of kidneys removing b12 at different rates. I couldn't get my head around why it might not be 'sticking' - believe it or not I used to be quite intelligent but I can't think myself out of a paper bag atm.

Can I be nosey and ask what your strategy is to maintain your b12 levels? I too have had years and years of depression and anxiety which may well be linked to the b12 deficiency. If I can shake that as well as improving my physical health, I will be so happy. I can't believe that, at not yet 40, I feel like an unhealthy 80 year old on most days!

Also, we wondered why this all seems to have come out of nowhere. I had a breakdown last summer as a result of v significant workplace stress over a 12 month period and considerable personal stress. I also had a few blood transfusions after the birth of my second child in Sept 2015. Is it possible that either of these could be a factor?

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B12 symptoms tend to develop really slowy and creep up on you over time and you just put them down to other things as your body is very good at regulating B12 levels using stores in the liver but the process that allows that to be released depends on the process that allows you to absorb B12 from your food - so as your absorption problem really starts to bite and you run your stores down quicker and quicker and then things seem to snowball. I can actually trace symptoms back over 5 decades and I'm sure I'm not alone.

I usually inject about 4 x a week but in between use a mix of nasal sprays (hydroxo and methyl) and sublinguals (adenosyl) as I find that the different forms of B12 tend to do different things for me ... Tends to be 2.5mg methyl (nasal - uptake likely to be around 3%), 3mg adenosyl (sublingual - uptake likely to be around 1%) ... and occasionally .5-1 mg hydroxo (nasal - uptake likely to be around 3%). That's daily, adenosyl in am and methyl in pm.

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Oh dear! You do have an ignorant and nasty GP.

"self injecting but when I looked online I just felt really confused about what to buy, where from how to do it etc."

I have recently started self injecting, and like you I was confused, but help was provided from people on here.

You need 5 things, plus a Sharps container (to put used needles in.)

1. Syringe

2. Needles for drawing up the B12 from the B12 ampoules.

3. Needles for the injections.

4. Alcohol swabs to clean the injection site.

I bought 100 of each and they can be bought from Medisave.

5. B12 hydroxocobalamin ampoules - most people buying from Germany. – I also bought 100.

Smaller quantities can be bought of everything.

The ‘experts’ on here will give you needle sizes etc. and where to get the B12 ampoules.

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Thank you - it's really overwhelming isn't it? Was really hoping to do things the proper way via the Gp but, depending on the next appointment, it looks like I may have to take matters into my own hands. Strange that they have been happy to throw antidepressants, anti anxiety tablets and hefty painkillers at me, but not a vitamin I can get in tablet form from asda if I could absorb it!

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It’s not strange that the doctors offer anti-depressants and painkillers at the drop of a hat . These are huge money makers for the pharmaceutical industry and the doctors are keen to please them . .......................B12 Hydroxocobalamin is really cheap and cannot be patented because it’s a vitamin . You will find that it’s only manufactured by small firms and God bless them for that . Yes, I’ve turned into a huge cynic since I was diagnosed with PA ( had to go to a private doctor for that ) It has been such a terrible experience. It probably maddened my doctor when I got the diagnosis privately , after being more or less told I was a hypochondriac . You have certainly been through the mill . Self -injection turned my life round . I can only recommend it . It’s quite cheap too if you buy everything in bulk (100 ) look at loads of videos ( some are not very good ) of self-injection into the thigh ) I get my ampoules from a German online pharmacy and I like the 1mg x1ml ones, as there is less liquid to inject ROTEXMEDICA DEPOT is the name . Depot means that it is the Hydroxocobalamin B12 which is what the NHS uses (if you are lucky enough to get any ). 1mg x2ml is called HEVERT DEPOT . which are also excellent . I use versandapo.de , but it recently changed hands and now doesnt have its site in English . If you can manage German or have a translation ap they are very good and cheap . A bit more expensive is called mycare.de in English , also good but a bit dearer . Recently found that

Bodfeld apotheke .de is the cheapest for rotexmedica depot and shipping , but they don’t have a site in English . There are loads of German pharmacies who sell B12 ampoules , but don’t ship to U.K. . You have to register first when you purchase . Can’t think of anything else . Except do take a folic acid tablet 400 mg from supermarket or Amazon . It works with B12 . Or maybe a multi vitamin and mineral tablet .

I Wish you the very best . You have friends here

So many of us have been through the hell of incompetent doctors where PA is concerned .

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No.

Antidepressants are not, in any way, big money spinners for the pharmaceutical industry. Almost all the antidepressants your GP will prescribe are off-patent. That means that they aren’t even made by ‘Big Pharma’ but by ‘little pharma’. They cost the NHS a couple of pennies a day, barely more than it costs to manufacture them.

And the same applies to painkillers, if not more so.

This must be the hundredth time I’ve had to refute this fake news.

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OK, I’ll accept that I may be wrong on this . I do tend to get carried away when I think of all the folk that are prescribed the above instead of getting the equally cheap B12 , which can DO NO HARM,unlike painkillers and antidepressants.

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Not wrong Wedgewood, as can be seen from this interesting article from 'Pulse', it is the corrupt way the system is set up so that a surgery would be paid a lot more for diagnosing Mental Health or Altzheimers, compared to say, hypothyroidism and probably nothing for B12 !

thecommissioningreview.com/...

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Hi,

I've assumed you're in UK. If you're elsewhere, some info below may not apply. I am not medically trained.

Some B12 links that may be of use...

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

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

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

UK 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.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment.

hdapatientcaretrust.com/

PAS (Pernicious Anaemia Society)

May be worth joining and talking to PAS if you suspect PA.

Based in Wales, UK but has members from around the world. Offers support and info about PA. In some cases PAS can intervene on behalf of PAS members.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

UK b12 blogs

May be stories that are relevant to you on these blogs.

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

Link about What to Do Next if B12 deficiency suspected

b12deficiency.info/what-to-...

Blood tests

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

Coeliac Disease

Coeliac disease can lead to B12 deficiency due to effect on gut. NICE guidelines on Coeliac disease recommend anyone with b12, folate or iron deficiencies are tested for Coeliac disease. Has your GP tested you?

In UK, two first line tests are recommended.

1) tTG IgA

2) Total IgA

My experience is that Total IgA test is not always done but I think it's an important test as people with IgA deficiency will need different tests for Coelaic disease.

NICE guidelines Coeliac Disease (2015 version)

nice.org.uk/guidance/ng20/c...

Coeliac blood tests

coeliac.org.uk/coeliac-dise...

H Pylori infection

patient.info/health/dyspeps...

Have you ever been tested for H Pylori infection?

Nitrous oxide

Have you had any surgery involving nitrous oxide?

gov.uk/drug-safety-update/n...

Best piece of advice I ever had was to .....

always get copies of all my blood test results.

Access to Medical Records (England)

nhs.uk/NHSEngland/thenhs/re...

nhs.uk/chq/pages/1309.aspx?...

"dismissed my neurological symptoms saying i could walk so they didn't count"

I suspect your GP may be unaware of the potential neuro consequences of under treated B12 deficiency. Inadequate treatment may lead to further deterioration and possibly permanent neuro damage.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, available to PAS members only.

pernicious-anaemia-society....

Blog post from Martyn Hooper's blog, mentions SACD

martynhooper.com/2010/09/21...

Link about writing letters to GPs about under treatment of B12 deficiency with neuro symptoms.

b12deficiency.info/b12-writ...

"suggested b12 tablets (!)"

Oral B12 tablets are only recommended in UK for those with proven dietary deficiency. See BSH Cobalamin guidelines link. BSH Cobalamin guidelines indicate that people with B12 deficiency with neuro symptoms should receive injections whatever the cause of B12 deficiency.

"she intimated I wanted them for a 'psychological boost'"

B12 deficiency can have a profound effect on mental health.

martynhooper.com/2017/01/22...

b12deficiency.info/b12-and-...

"She also said she'd test for pernicious anaemia"

See flowchart link earlier in post for info on when PA and Antibody Negative PA can be diagnosed in UK.

Hope GP is aware that it is still possible to have PA even if IFA test result is negative.

Intrinsic Factor Antibody test result may be influenced if tested close to b12 injection/B12 supplementation.

labtestsonline.org/tests/in...

"and I'd have 3 monthly injections."

UK recommended treatment for B12 deficiency without neuro symptoms is ...

6 b12 loading jabs followed by a jab every 3 months

UK recommended treatment for B12 deficiency With neuro symptoms is ...

A b12 jab every other day for as long as symptoms continue to get better then a jab every 2 months

See BNF, NICE CKS and BSH Cobalamin links for more info about UK B12 treatment.

NICE CKS link recommends that GPs should seek advice from a haematologist for patients who have B12 deficiency with neuro symptoms. Has your GP spoken to, written to or referred you to a haematologist?

Neurologist

With neuro symptoms, have you been referred to a neurologist? It's your right to request referrals but GP does not have to agree. I put referral requests ina brief, polite letter to GP along with evidence eg symptoms, extracts from documents etc that supported my request.

Be well prepared for any specialist appointments. B12 deficiency may not be as well understood as it could be . This was my personal experience.

Help for GPs

PAS have a document in library section on website "An Update for Medical Professionals: Diagnosis and Treatment " available to PAS members only.

There is a section for Health Professionals on PAS website. They can join PAS for free, as associate members.

pernicious-anaemia-society....

I gave my GPs the following....

1) PAS symptoms sheet with all my symptoms ticked plus I added any symptoms not on list.

2) A copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and B12 Deficiency"

3) A copy of BSH Cobalamin and Folate Guidelines

More B12 info in pinned posts on this forum.

I hope you get the treatment you need.

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Thanks, that's great. I Will go through all of the brilliant info you guys have provided before my next battle/gp appt. I have a solo weekend away booked in a posh hotel this weekend purely so I can sleep, chill and recuperate. I'm hoping that this coupled with yesterday's injection will reduce the brain fog a bit so I can get my head round it all

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Hi,

"before my next battle/gp appt."

In UK, my understanding is that letters addressed to GPs/specialists are filed with a patient's medical records so are a record of issues raised. I preferred to put queries about treatment etc in a brief as possible, polite letter. See letter writing link in my post above.

Sometimes writing letters can irritate GPs so GP/patient relationship may be affected but I feel info in letters is less likely to be ignored than something said in an appt.

Do you have a supportive person who can go with you to appointments? Even better if they have read up about B12. I suspect GPs may be kinder if there is a witness present.

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I'm taking my husband to my next appointment. I've not seen this gp before so don't know what to expect, but my husband has seen me go from a fit, energetic, capable, intelligent person to a bit of a wreck and he won't mince his words. I take on board your advice 're letters and will def consider this. Would you suggest letter or meeting with practice manager as next step?

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Hi tired momma glad you found this site. I was diagnosed with MS after years of minor symptoms them major symptoms just about finished me off. Iv had more information and help from the amazing wonderful people in 3 minutes than a life time of DRs. Good luck with your next Gp appointment get tooled up with information and blast them with it.

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Hi again,

"Would you suggest letter or meeting with practice manager as next step"

I would spend time thinking about what might get the best results. I did meet a practice manager over concerns I had and it was a waste of time.

My personal opinion is that getting a complete set of medical records prior to raising concerns formally may be helpful. I think it can be useful to know what has been written about a patient in the past in case something gets lost from medical records.

Maximum cost complete set of medical records in UK is £50, maximum cost test results £10.

In UK, my understanding is that doctors have to change factual inaccuracies in medical records eg wrong name, wrong date etc but do not have to change things just because a patient disagrees with what doctor has said or with doctor's diagnosis.

Patients can formally request that a note be inserted in their records to give their opinion where they disagree with what has been written.

Some UK GP surgeries have on-line access to a summary of test results/records. Info on how to access this should be on GP surgery website. It's important to remember that this is just a summary and may not have all the info needed. Patients may want to consider having access to paper medical files.

If cost is an issue then it is free to view own medical files but may need to make an appt to view with practice manager.

I resorted to self treatment as I was unable for a long time to get NHS B12 treatment.

More info re Nitrous Oxide

I note that you mention child birth, did you have gas and air mix as pain relief during labour? Gas and air mix contains nitrous oxide. Nitrous oxide inactivates B12 in the body.

B12 deficiency caused by nitrous oxide is mentioned in Martyn Hooper's books and Sally Pacholok's books.

I think it might be worth talking to PAS next time PAS office is open. You would need to be a PAS member.

Glad to hear you have someone supportive to go with you. If brain fog is bad then there is someone else who can ask questions on your behalf or maybe take notes. May be helpful if there is time for him to read some of the info on this thread, pinned posts and on websites mentioned.

There are posts on Martyn Hooper's blog about PA about how PAS has supported members trying to get a diagnosis.

martynhooper.com/2017/06/24...

Has GP excluded possibility of diet as a cause?

If you eat plenty of B12 rich food eg meat, fish, shellfish, eggs, dairy, foods fortified with b12 then diet as a cause is less likely and it is more likely that there is an absorption problem eg PA, Coeliac disease and other possibilities. See Risk factors section in my post above.

Is GP aware of any family history of b12 deficiency, PA or other auto-immune conditions?

Having auto-immune conditions in family may increase chances of developing an auto-immune condition.

I am not medically trained, just someone who has spent a long time trying to find out what is wrong with me.

Good luck.

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I did indeed have gas and air with my second child, born in 2015. Also lost a lot of blood after a hyperemetic pregnancy so took a long time to return to health.

Diet shouldn't be a cause as I eat lots of b12 rich foods.

No history of PA in family but my mother has recently been diagnosed with type 1 diabetes ( I'm told it's unusual to be first diagnosed in your 70s).

I noticed that the PA society return mid june so will speak to them then.

Sorry for abrupt reply, phone playing up

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Just want to say good luck! It sounds like you've had a horrible time with this. At least in this group, you are no longer alone, and you can draw on the experience of many. I found it took some time to start feeling better after I started injecting, and sometimes I felt like it would never feel better, but it will happen. Wishing you all strength xx

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