I have been suffering for a year with all of the symptoms of PA. My b12 levels have fallen from 550 to 280 within a year... my b12 tests come back low normal or normal and my GP doesn't believe me that I could still have PA - in the form of a functional b12 deficiency.
They have been SO quick to write me off as anxious and do nothing else, and tbh that is causing me so much distress on top of my symptoms - but I feel I can't even show them that.
I was a runner, hiker, surfer, and now my whole body has eroded to unable to do anything. I even have had to leave my job.
I am wondering if anyone has sought b12 from aestheticians that have prescribers present? Like a nurse or Dr that can ok injections.
Of course I would rather be getting the right thing from my Dr, but they have given me no choice but to try other avenues.
They won't do MMA or IFAB tests, so I have no choice but to try and save my own life by basically drinking mouth sprays and taking under the tongue meds.
After long covid I have not been the same, and definitely after my jab last year. It made me feel so much worse.
They quickly did nothing, assigned it all to stress (even with massive neuro symptoms they act like I am making up!!) And then they gave me PPIs saying maybe I had stomach acid issues after my stomach went wild... of course this lead to my body taking a deep dive into hell on earth last year (in line with PA).
Please help, anyone with advice?
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Should say my symptoms are: tingling, numbness, muscle pains, joint pains, joints crunching, menstrual disturbances, bone pain, head aches, weight loss, feeling cold, brain fog, etc... (all else has been ruled out, but they won't listen to me about PA because my bloods aren't low enough)
If your budget allows get yourself some private tests. These are by no means conclusive but if they show positive your GP will have to sit up and take notice
Your choices are:
MMA
Homocysteine
HoloTC (some say this is the most reliable)
IFab
My husband’s NHS serum B12 was high (becsuse of oral supplements) so GP said it was fine. IFab was negative also but then it often is, even when PA is present. However, some are lucky and manage to get a successful IFab test on the NHS
After we presented GP with the positive MMA she sought advice and ordered an NHS MMA and IFab, both were negative but because of his positive private one she is no longer discounting PA and is investigating further
Your MCV (mean corpuscular volume) in your FBC (full blood count) is it raised?
Martyn Hooper’s B12 book will arm you with enough knowledge to ask your GP the right questions and to insist (gently of course) that you be taken seriously
It doesn’t seem to have. He’d been supplementing oral B12 for years prior to this test and serum B12 was high. As a precaution against skewing the MMA result he stopped supplementing for a while but B12 can take a very long time to decline so he should’ve stopped many months before the test
Adding PPI's in the case of PA is like throwing a petrol can onto a tire fire.
You could seek a B12 shot from beautician or other source but it will elevate your B12 levels and make it almost impossible to get further B12 deficiency testing and/or a PA diagnosis. If you cannot convince the doctors to run some other PA tests or test your MMA, the other possibility is self-treatment.
Hi, I am sorry to hear about this. It is so frustrating when you’re not listened to. Unfortunately, the only way to get things done these days is to keep pushing. If you know something is wrong then trust yourself. If that GP won’t help then go and see another for a second opinion.
The elephant in the room here is your covid infection. These symptoms might not alleviate for months or years if the infection has had an impact on your immune system. You’re not alone in this as plenty of people are unknowingly disabled or becoming that way through repeat infections.
Practically, keep on at your GP and write down your symptoms so that it’s there in black and white. Some people self inject B12 when there is no other option, I’m sure others could advise you on this.
My B12 was 250 and I was told there was no way I had P.A. I sat in the doctor's room and refused to move until she ordered IFab and parietal cell tests. She wasn't happy, even threatened to call the police to evict me, told me it was a waste of NHS time and money and reminded me of the other sick patients waiting to be seen. I just sat there and said order the tests, then I'll go every time she complained. It got me the tests, which thankfully were both positive. But we shouldn't have to resort to such measures to get what we need in the first place ☹️
Good heavens! I just found out, that my b12 had been 260 in 2019, managed to raise it (in serum, so maybe not correct) to 500, then it dropped to 290...
Could I have always had this issue? I have had fatigue since I was little... could it only now be causing me neurological symptoms? My mind is blown.
How the NHS didn't think to check is beyond me!
I feel absolutely abused tbh.
Good for you for taking such a strong stance, when you knew something was wrong, I really admire you 💛
Thanks everyone for these suggestions. I have been supplenting so I now worry that my results will be skewed :/
I feel so much fear and feel on the brink of disability.
I will push for MMA, and if none of this works, I will go to random places who give b12 shots for 'wellness' and 'energy' and just get as much as I can, plus orally sprays.
If desperate, I will go to Germany. I have no choice at this point.
Sad I took supplements when they didn't help me, but they are absolutely useless.
The Dr I saw initially at 280 was absolutely horrifically cruel. I said my legs are tingling, my feet are burning cold, as I cried... she took my shoe off, touched my foot and said 'feels warm to me'. Evil.
I'm so sorry. You are doing the right thing, so stick with it. Your last paragraph rang bells - at an appointment with a relative the doctor said much the same and she also cried, but she had misunderstood the GP who actually meant that to her that was a real sign of neuropathy - that imbalance between what we are feeling and 'actual'. (Mind you, she is still waiting for a referral......) Your GP was not well informed, not unusually.
It may not be PA, there are other forms of B12D. Covid may impair availability of methyl groups, being a significant stress on metabolism sciencedirect.com/science/a...
I have been in your situation. The key is not to panic, you will recover, it will take time, but do not fear. Stay focused.
I also went to numerous cosmetic salons for injections in London. But you MUST do that every other day for it to work properly. You can't have one here or there, you must organise them every other day.
If I can help in any way it is to suggest you review supplies from Germany and order them now - 1ml/1mg Hydroxocobalamin DEPOT with 2 syringes, plunger, sharps box. You will have to inject and avoiding it will make you more scared. Try to research what you need now.
In the meantime, try to get every other day injections from salons (most won't let you do that but will do once a week) so you can overlap them for a week - every other day. Observe how they inject, watch the process, and take it in.
Then when you do it you must rotate your sites across arms and legs. And do it every other day indefinitely.
It is so hard when we feel so unwell. But what you do in the early stages matters. So, move fast but with purpose. Don't put off self injection - just do it carefully and rotate every other day.
Some of your symptoms could also be caused by low vitamin D levels and also thyroid issues. Do you have any other blood test results?
Having had COVID can also affect your thyroid hormones and it can take some time for them to recover.
From personal experience I know how debilitating having low vitamin D levels can feel; I experienced daily headaches, muscle and joint pain and very weak arms (couldn't lift them up) also very tired.
If you have the energy and have any thyroid blood test results it may be an idea to post on the thyroid part of healthunlocked. At least it could rule out thyroid problems for you.
Many here know how challenging it is to be taken seriously by a GP and end up being gaslight and told it's all in your head. You are not alone! Don't give up 🤗
Hi there my Serum B12 was 221 😟and my Active B12 was around 44 ish… I have empathy as I thought I may have PA but tests were negative (IF) and celiac! I have been taking B12 complex for over a year but it’s not absorbing 😟 fast forward I’m trying to argue my case with my GP (what’s with then) 🙈 good luck in your endeavours… I also quoted the NICE guidlines and my notes say ‘she read something off the internet’ 🙈the note wasn’t my GP may I add.
I just hate this attitude that 'we get information from the internet/Google'.
Well, how else are we supposed to understand what is wrong with us if the Doctors are condescending to the point of offence? And suggest mental health issues?
I think we should tell doctors (gps) that the information isn’t from Google but obtained from peer reviewed medical research papers on sites such as PubMed. On the INTERNET. Accessed by other doctors.
People who make the effort to read research do so because they don’t assume that they know everything and have no need to learn. They have enquiring minds.
Hi, First of all, do you belong to PAS? If not it wld be a good idea, only costs £10/year. However you can still get in touch with them seeking advice. They helped me to obtain B12 injections from my most reluctant surgery… They will guide you you to write letters/emails to your GP… they even contacted my surgery… that was a few years ago. So I would suggest getting in touch with them for support. Good luck.
I hope so. They did help me but don’t give up, keep asking for support. It might be a good idea becoming a member… relatively cheap and it does support their incredible work! They send newsletters regularly once one becomes a member. I really do not know what would have happened to me without their tremendous support and advice. I was passing out all the time, while walking, standing up, sitting down having food and even while sitting on the sofa watching TV or reading .. yet GP refused B12 injections, but with their support i kept on sending letters to the GP including research papers and in the end they agreed. I became a member then. So impressed. Hope you get help. Don’t give up, that’s what GPs expect… they don’t get any bonus money from big pharmas for prescribing cheap and effective B12… It does take quite a while to begin feeling better though… so time is required for the body to recover. Depending on degree of damage some functions might not recover. But starting the treatment is important. You might feel worse to begin with… that should improve with regular injections. Also don’t be fobbed off by GP to have a B12 blood check once you have started the infections because your level will always be very high, well above the norm but it’s not dangerous since vitamins B are water soluble so any extra will be excreted.
If you haven't already, please have a look at the thread I linked to in my other reply. It has info I think you'll find useful...I'm too tired today to repeat all the info here.
Your situation sounds very similar to mine and it's very hard, especially if you have neuropsychiatric probems.
PA is only one cause of B12 deficiency and its the name for an autoimmune disease that stops proper absorption.
Other causes are numerous, not just diet. They include:
- Hypochlorhydria: Low stomach acid which can happen from chronic stress, poor diet etc
- Gut bacterial imbalance/SIBO/Leaky Gut: Generalised poor gut function exacerbated by poor sleep, chronic stress, alcohol
- Gut inflammation: Chron's disease, IBD
- Diet: Vegans and vegetarians but this is generally quite rate. Diet may be a factor but is often not the final cause, i.e. lack of B12 and other nutrients may weaken the gastrointestinal system.
If you do have Pernicious Anemia you will want a Doctor's assistance to run proper testing. I believe there is a clinic in Cambridge that tests for anemia.
If you don't think you have PA (which is a lifelong condition so you want in on your medical records) and you think it's one of the others you may be able to self treat. But it is CRITICAL that you self treat with every other day injections and do not stop until your symptoms stop improving. And that can be months.
I had PPIs for months before I fully crashed. Like I think I was on my way down gradually due to eating less meat or something, or gastro upsets after covid maybe causing me issues, but not as fast as the PPI AND H2 blocker combined.
It's crazy. They took till September to test my blood for b12 and I had already been tingling for almost a year?!?! Then they gave me PPIs and H2 in January and April and had me on both - when I kept saying I do not get reflux. Even went through an upper gi endoscope and they said I had mild gastritis, and no reflux burns.
I am thinking that the PPIs stopped absorption and I'm still unwell from it, even after coming off them in September.
I have been taking oral spray to bypass stomach for the last week, and my mood is so low, and I am having so much tingling and numbness. I wonder if it may be the theory of things getting worse before better?
My levels are likely normal in my blood now, but I don't think absorption is what is should be...
I am going to push for MMA soon.
But for the next couple more days, I am going to continue with oral spray, iron, folate, b vitamins, and D (D is insufficient)
Because I can't go without help.
Feels like a catch 22. And I don't think my gp will help me, they call me anxious.
I am but I have to hide it. If I am calm they think I am fine, if I show how broken I am they use it to confirm their biass. Its hell.
Might be able to get injections from an aesthetics place, but I don't know if that's the right dose. I'd hope it would help me, but I am aware that once I get injections, any gp help may be harder to get.
Be aware that ANY SUPPLEMENTS will raise your serum B12 levels, which were already out of range on your last test.
Continuing to take oral sprays or other oral supplements can raise your blood levels but be a drop in the ocean to treat your symptoms - it is not as simple as just getting the levels up. Treating a B12 deficiency requires a specific treatment as per NICE guidelines - every other day injections.
The longer you delay every other day injections the higher the chance of symptoms. I would highly recommend that if your levels are outside of the range you move swiftly to self treat to avoid further complications which may prove severe.
I know, it's horrible to think that you have to do something so medical without medical support. But the consequences of not doing it will be worse, unfortunately.
It is easy to do and not harmful. Just take it slowly and try not to feel too anxious.
The key thing is to make sure you only take every other day injections and that you rotate the muscles and sites each time, i.e. use a different spot.
Only use 1ml/1mg doses.
When you get the clinics to do it you can watch how simple it is.
There are also some Facebook groups that are worth joining for extra help and guidance.
It’s really easy, especially after the first one. If you’re having difficulty getting your head around it, think about all those diabetics who routinely self inject insulin.
I would echo what others have said: hold off supplementing for now. Seek out a diagnosis whilst you’re symptomatic. It really is worth getting private finger prick tests if your GP really won’t comply. Could be the best money you ever spend.
I would also urge you to get your thyroid checked or, if you have some recent results, share them on the Thyroid UK forum on healthunlocked. The NHS’s ‘normal’ range is unfit for purpose and keeps many, many people in poor health.
To answer this question, neurologists ask which is your dominant hand ? We are not symmetrical, we have minute discrepancies between our left and right side.
We have 300 trillion cells and 7 trillion nerves. Our nerves would stretch out to 45 miles. I call our nerves our ‘wiring’. These are not nice straight lines, we are wonky. Look at trees, their branches are not at nice 45 or 90 degrees. So, yes, people can experience more numbness on one side of the body because all of us are ‘naturally wonky’.
I just plain wonky too. . . . . . Ye'd need to be a bit wonky when ye discover ye are B12D and maybe need 10x 20x or even 30x the amount of this stuff compared to what they want to give you and your going to have to perform a bit of DIY ye hadnt quite bargained on. . . . .
Thank you yo each and every person who has shared their experiences on this thread.
I have got some good advice, and I am now armed with more information.
I reached out to PAS, for advice today. They replied quickly, which I am very grateful for, I have taken their advice in terms of trying to access better care 🙏🏼💕
I pray every day that things will get better, but it's so ruthless and painful to have to fight for health. The moments of total brokenness have been heart renching. And, in the face of countless dismissive GPs, or a few that just lack the knowledge.
Similar situation here. I ordered a blood test thru an online doc and got the intrinsic factor antibody test at a local lab. Took results to my doc and combined with the other blood test results she formally dxd me with PA. She would only give me 1 injection a month so I started going to one of those clinics where they give b12 and another anti aging shots, botox and stuff like that. They would only give me .2ml 2x per week at $20 per shot. So I got a prescription from agelessrx.com and started doing 1ml 2x per week with extra left over in the bottle. They send me 3 bottles of methylcobalamine every 3 months for $225 including needle, syringe and alcohol wipes. Sux that I have to pay out of pocket but who cares cuz its changed my life. After a year of SI I'm functional again. I haven't told my doc yet but will tell her next time I see her.
The trouble is that you have taken supplements, which will now skew blood test results . I can understand you doing that because you must be feeling desperate with the awful B12 deficiency symptom
It’s incredible that your GP will not give you MMA or IFAB tests . Also doctors should know that a B12 blood serum test can contain up to 80% of inactive B12 . The fact that you have such debilitating symptoms should alert your doctor , even if he/ she is ignorant about that fact .
It’s important that you get B12 injections . If you would consider self- injecting , I will send you details of how to obtain B12 single use b12 ampoules from excellent German online pharmacies . B12 ampules are only available on prescription in U.K. They are obtainable OTC in Germany .
Most members on this forum have had to resort to self- injecting , because of not being able to get regular enough b12 injections that will keep their B12 deficiency symptoms at bay .
Needles , syringes etc are obtainable from U.K. medical suppliers .
The cost is about £2.00 for an injection .So less than a cup of coffee in a café!
If I were you , I would change doctors as a start on your way to getting treatment .
After using supplements it has my b12 still as lower normal and my active b12 as normal - can I still be deficient with both of these sitting in the 'normal range'?
Which pharmacies are reputable/safe in Germany, and what kind of b12 do people order?
I would like to order in for as soon as possible and begin the process.
And does it have to be twice per week Sleep injections forever? Or do people start that way, and then go off of how they feel after a while?
I am in such a bad way, can barley walk this week.
I have an appointment with a newer Dr privately but it is in 4 weeks, and I just don't know if I can wait that long in the shape I am in just now...
Do people tend to get a lot of numbness and tingling? Weakness twitchy sore muscles? Lose weight from the stress of it all? Sore bones, joints, head? Sore tongue!? Period stopping? The works...? Oh and the fatigue, oh the life sucking fatigue and moments of breathlessness... it is truly hellish.
I honestly don’t know about activevB12,test . I only know that the blood serum test can show normal and you can still be deficient . I didn’t realise that you had had an active B12 tests. Anyhow your SYMPTOMS are the most important criteria .zMot blood tests . Your symptoms do point to B12,deficiency .
I’ll send you a list of causes of B12,defiiciency
The german onljne pharmacies that we use are. controll teac👍 by the German Health Authorities and they display their approval as a badge The ones that we use are all approved
Yes tingling and numbness is. common. Also red and swollen tomgue. Above all life-sucking fatigue .
Pernicious Anaemia is the most common cause of vitamin B12 deficiency . It is an autoimmune condition.Autoimmune conditions seldom come alone . The most common autoimmune “companion”of P.A. is a thyroid condition . There are over 100 autoimmune conditions
In P.A. the body turns on itself and produces antibodies which destroy the parietal cells in the stomach . These cells produce the Intrinsic Factor and stomach acid , both of which are essential to the process of absorption of vitamin B12 .
Atrophic gastritis , which thins the stomach lining causes Pernicious Anaemia .
Unfortunately the Intrinsic Factor Antibodies do not always show up in the test for P.A. ( Intrinsic Factor Antibodies test). This happens about 50% of the time in P.A. patients — Often takes several tests before they show up .. …. Often doctors do not have this knowledge , and conclude that a negative test means no Pernicious Anaemia . Symptoms must always be treated .
Pernicious Anaemia is incurable and must be treated FOR LIFE with B12 injections.The regularity required to keep symptoms at bay can vary from daily to 3 monthly .. It is not known why there is such variation in need. More research is needed . Tablets are NOT the answer.
OTHER CAUSES
Vegan or strict vegetarian diet .B12 is only found in meat, fish, dairy products and eggs.( some food stuffs are supplemented with B12 ) eg marmite .
Certain medications e.g. Metformin .Proton Pump Inhibitors ( P.P.I.s) There are others — look them up .
Gastric surgeries Bariatric and others .eg Gastric Bypass, Sleeve Gastrectomy. B12 injections FOR LIFE required .
Infestation of fish tape worm ( different to meat tapeworm) caused by eating raw fish or insufficiently smoked fish that is eaten uncooked .
THE FOLLOWING RELIABLE GERMAN ONLINE GERMAN PHARMACIES ( all registered with the German health authorities) WILL DELIVER VITAMIN B12 SINGLE USE AMPOULES TO THE U.K.
apohealth.de. ( in Munich) Site is obtainable in English (Union flag, bottom left on my device ) also deliver World wide.
versandapo.de ( in Leipzig) Site is in German . Use Google chrome to obtain translation . This pharmacy is usually cheaper than apohealth
In German . Use Google chrome if you need translation . Also deliver to Australia and New Zealand .
When filling out the address form , you will see that the country is already filled in with GERMANY / DEUTSCHLAND . You must first change your country to “ Vereinigtes Königreich Grossbrittanien und Nord Ireland “. UNITED KINGDOM , U.K. VEREINIGTES KÖNIGREICH however expressed .on the drop-down list . Do this so that your post code and then the rest of your address will be accepted , .
Other wise you will be unable to order,! and will start tearing your hair out !!!
Amazon.de also sell Pascoe and Hevert , but you can’t use the pharmaceutical references to order
The following brands are obtainable
Panpharma ( formerly Rotexmedica ) b12 depot 1mg x 1ml ampoule ( depot indicates Hydroxocobalamin) ref no 16199653. This is the most popular ampoule used by PAS members .
It is the best value , but sometimes /often is out of stock . You can then opt to be emailed to be told when it is back in stock .
If the Panpharma b12 depot ( Hydroxocobalamin ) is out of stock , you may like to consider the Panpharma Cynocobalamin . B12 The pharmaceutical reference number is 16199707 .
Cynocobalamin may need to be injected more often .
Pascoe B12 depot 1.5mg x 1ml ampoules- Packet of 10 ref no 07568672
Pascoe b12 depot 1.5 mg x 1ml ampoules-10 packets of 10 ampoules (100)
Ref no 07568695
The Pascoe are much cheaper per packet if you buy the offer of 10packets .If you inject weekly , or more
that would cover you .
But if you inject less frequently, the ampoules may become out of date .
Pascoe Cynocobalamin b12 Reference number is 03262634 for 1 packet (1mg x 1ml)
Pascoe Cynocobalamin B12 Reference number is 03262657 10 packets 100 ampoules ( 1mg x 1ml);
Hevert b12 depot 1mg x2ml ampoules packet of 10
Ref no 06078368
Hevert b12 depot 1mg x 2 ml 10 packets of 10 ampoules- ( 100)
Ref 06078380.
Use the pharmaceutical reference numbers to order , much simpler than using brand names , and then you know you are ordering Hydroxocobalamin, not Cynocobalamin , which the companies also sell . But some patients like Cynocobalamin B12 . It is the B12 of choice in the USA , and cheaper than Hydroxocobalamin It’s just called B12, NOT B12 Depot
When filling out your address form, do fill in your country first of all . “Germany”/ Deutschland : will be displayed , so you must change this with the drop-down list which will appear , — to U.K./ Gross Brittanien/ Vereinigtes Königreich Grossbrittaniens , — how ever it may be expressed. If you don’t do this , your U.K. address and post code will not be accepted , and you will end up in a tizzy . We don’t want that !
PLEASE BE AWARE OF THE FOLLOWING
Do remember that now the U.K. has left the EU , there is a limit to the value of goods that we are allowed to import, before tax is due on items coming from the EU . Tax is applicable if the value exceeds about £132.00 , but I’m not sure of the figure , so please look it up . On top of that there is a charge of £8.00 made by Royal Mail for processing it. I’m also not sure of how much the tax is . But a member has been shocked by what she had to pay when she ordered over the limit . . So please be aware of this , and check . I believe that even the cost of delivery charge is included in the total . It was when I ordered something from USA .
12 injections are FOR LIFE with Pernicious Anaemia . Give yourself 6 injections over 2 weeks , called loading injections, then as often as necessary to keep symptoms at bay .
I honestly don’t know about the active B12 test . But I do know that it’s possible to have even a high b12 result with the blood serum test . and have P.A . It’s called functional deficiency . If you could get some B12 injections which improved your symptoms , then you would know that you had P.A. You cannot overdose on B12. It’s advisable to take a modest 400 mcg. b9 tablet daily b( called folate in food and folic acid in a tablet . It works together with B12 .
We all live in hope of better research in B12 deficiency! 🤞🤞🤞
I do not know your full background but to resolve neurological issues from B12 deficiency can take months to years, it is NOT just a matter of raising B12 and the damage is repaired. Damaged nerves are extremely slow to repair, even with sufficient B12 in the system.
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why am I B12 deficient?
Happy 4th of July fellow US Americans, and Good Day to my friends elsewhere in the world! I have questions for all:
B12 Deficiency is the worst experience of my life!
