Hello all, new here and excited to learn and share and find answers. Hope everyone is doing well today xxx
Keeping it short as I can, about me: from the U.K., in my 20s, female, and realising that B12 absorption problems (and whatever causes that, as yet unknown in my case) could be a major player in my mysterious long-term health issues.
First off, I want to ask if it’s ok to share my experience and seek guidance here, as I’ve technically been told by my GP that I “don’t seem to have PA” but that something else is going on meaning I need injected B12. Please lmk, and I’ll post more on my story if it’s ok! (if it’s not, a signpost to another forum would be so helpful)
Cheers!
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a-wonderful-seed
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Hey wedgewood ! Pleasure to be here with a chance to talk to you all. Reading around the forum, everyone seems so knowledgeable and supportive as well as educated. Relieved to find this space, and can’t wait to get opinions and get to the bottom of all this😇
It’s a bit of a long story and I’m not the most concise poster, though, so I’ll put everything I know so far in a reply below this one..
So to start at the start—ever since I was small, I’ve had fatigue (used to sleep all day and night as a baby and toddler, parents loved it!), low appetite, poor distance vision, rosacea and slow-to-heal pale dry skin, sensitive stomach/digestive issues, atonia, numb/cold extremities, restless legs, PCOS-like symptoms, pica, terrible short term-memory and ‘brain fog’/fugues, poor interoception, violent mood swings/depression (some episodes lasting literal years), faulty executive function, and many ADHD/Asperger’s symptoms. Though I’m considered of above-average intelligence with hyperliteracy (well, so standardised tests say!): I had to drop out of Uni early due to exhaustion, focus problems and emotional distress; I struggle to perform well at work, and; I still can’t pass a driving test to save my life🙈
More recently (in the last few years), as for many of us stress has unlocked other negative physical changes in my body—in particular forgetfulness, obvious hair thinning, nail pitting, tinnitus, palpitations, GERD & bloating, breathlessness, muscle atrophy, joint pain, and painful parathesia & cramps unrelated to exercise. All this last summer, I was halfway to bed-bound with pain and exhaustion and depression, feeling like I was in my 70s rather than my 20s—despite the fact I’m not over or underweight, eat a healthy diet of variety (including supplemented B-complex and D3/K2), and I walk daily/exercise weekly.
Interestingly, it was a dramatic and horrible reaction to my first COVID jab (Pfizer) landing me in A&E back in June that pushed all this to breaking point, and finally got me into a GP’s office to investigate. Up to now, I’ve always fatalistically and apathetically viewed my state of health as just ‘the way I am’ or a psychosomatic problem. Now though, having just had 5 one-a-week loading doses of hydroxy (not enough, as I now realise reading threads here) that have noticeably improved my physical health in the short-term to the point it has surprised outside observers...I’m thinking maybe it’s not just me being crazy and defective?
Sadly, as I mentioned upthread, my NHS GP is resistant to setting up long term treatment, or even doing any basic legwork to figure out why my body is this way so I can figure out how to proceed. The best she could tell me after preliminary blood tests was, “well your B12 is perilously low (nb: I stupidly didn’t ask for a figure but she looked rather concerned) but your ferritin/folate/D look fine which is weird. Imo it’s not anaemia, or anything obvious from the fact sheet on the NHS website. Have 5 jabs and we’ll see”, then on my questioning further only said “Idk, could be anything, come back in 6 months if you feel bad again and we’ll maybe look into it more then”. Uhm, thanks?
Anyway, now my loading doses are over and I haven’t got a prescription or a diagnosis in hand, so I’m at a loss over what to do going forward. It’s been ten days, and already my extremities have started getting parathesic and my energy/mood is dropping. Ultimately, I really don’t want to go back in the dark, so to speak, not now I know how much better my life can be.
So—do I need to pester my GP for more extensive tests & treatment (and if so which?) Or find a different (private) more helpful doctor or dietician in a specific specialism? Or get DNA testing and interpret it to administer treatment myself? Or not worry about a diagnosis at all, and just order B12 shots online to do at home myself (mentioned this to my curious mother, she freaked)/get shots from a cosmetologist? (to get them from a high street chemist like Superdrug one needs a prescription, I’m told..)
Lately, I’ve tried reading up about potential conditions that match my symptoms, but the material is so voluminous and heavy-going that my head is spinning. At least, I really need to know if I’m dealing with a serious genetic disorder or not, and how to heal and/or deal.
Wild guess on my part, but—at birth I had pyloric stenosis (rare in females, and often linked to ASD in children), so I wonder if the corrective keyhole surgery I got (very new at the time) may have somehow accidentally damaged my gut/stomach absorption or intrinsic factor. Either that, or whether it could be repercussions of a dreadful and ill-advised course of heavy tetracycline/accutane (for acne) that I was prescribed about 12 years ago, which sadly annihilated much of my gut microbiome. All mere lay conjecture on my part, though—I have no medical training (dropped out of GCSE science, actually).
Advice gratefully received🙏 and if anyone else also new to B12 wants to chat more generally about how you’re feeling, I am down to commiserate/whinge/natter!
I too was a very sleepy baby with awful constipation(which has stayed with me)much of your symptoms also seem quite similar,my advice would be to look at insulin resistance with having PCOS symptoms(this is looking likely to be my problem and could be a genetic fault,I was identified as having an absorption problem in 2018)also it is a myth that only overweight people have insulin resistance-I have been under/normal weight all my life
That sounds like an interesting connection, especially the part about PCOS—my hormones were a wreck when I hit adolescence (quite late), and I had (still have) a very heavy flow and ridiculous cravings (usually for meat and sugar) as well as a few other symptoms that could indicate PCOS.
Could you elaborate a bit more on your case, particularly how B12 deficiency arises in conjunction with insulin resistance?
I strongly suspect I have type A insulin resistance syndrome because of very high blood sugar(with no symptoms) and mild acromegaly(tested for a pituitary tumour and none found)it is a INSR gene defect that means the pancreas is making too much insulin and as it is a growth hormone is causing the acromegaly,also it is a cause of PCOS as it stimulates androgen production-I started my periods aged 16 and a half,was immediately covered in acne and excess hair ,fatigue,depression,anxiety,thought I had MS and then bi-polar in my twenties,very heavy clotty painful irregular periods until a total hysterectomy aged 44,then thought I had RA/lupus for a few years,went for a blood test ,it was high blood sugar,was prescribed metformin and nurse said take a high dose b12 tablet,we'll retest in 3 months and b12 levels had only gone up by 48 points ,nurse said I have absorption problem,gave me loading doses,I had a lot of b12 symptoms ,they started to clear up,found this site ,started SI and continue to feel well for it,don't know the connection unless the excess insulin affects the GI tract,I don't think I have PA in the normal way
sorry,very long post!!I had a fasting insulin blood test this morning as insulin therapy has made me very ill,am off for a gynae appointment at hospital next week to be checked out for acanthosis nigricans(I also started with a discolourered undercarriage when I started my periods)but have never been checked out forIR and I should have been.Don't forget other things can cause insulin resistance and this is my experience,type a is a rare disease ,1 in a 100,000,I don't want you to think youhave this paticular one,but do get checked for insulin resistance and I am happy to answer any questions you may have as I might have missed some stuff out!
Thank you Sallyannl,after a lifetime of being fobbed off by docs I finally feel that I'm getting somewhere,even though it seems I'm a little off topic now I will do a new post and let you all know how I get on
If neuro symptoms are present then my understanding is that in UK, patients with B12 deficiency with neuro symptoms should be on following treatment pattern (from BNF - British National Formulary) whatever the cause of their B12 deficiency even if it's due to diet
A B12 loading jab every other day for as long as symptoms continue to get better then a maintenance jab every 2 months.
If no neuro symptoms are present then following treatment pattern is recommended in BNF.
6 B12 loading injections over 2 weeks followed by a maintenance injection every 2 - 3 months
Vital to get adequate treatment.
Untreated or under treated B12 deficiency could increase risk of developing permanent neurological damage.
See BNF, BSH and NICE CKS links in this reply for more info on UK B12 treatment.
Did GP ask you questions about your diet?
Do you eat a B12 rich diet eg meat, fish, shellfish, eggs, dairy and foods fortified with B12?
Dietary B12 deficiency is sometimes treated with low dose 50mcg cyanocobalamin tablets but my understanding is that dietary B12 deficiency where neuro symptoms have developed should be treated with B12 injections.
If yes to a B12 rich diet then diet as a cause of B12 deficiency is less likely and it is more likely that there is an absorption problem in the gut.
There are many possible causes of B12 deficiency including PA (Pernicious Anaemia), Coeliac disease, Crohn's disease, some medicines and drugs eg metformin, a diabetes drug and PPI drugs used to treat acid reflux, exposure to nitrous oxide, damage to terminal ileum (part of gut where B12 is absorbed), H Pylori infection, internal parasites eg fish tapeworm etc.
Each CCG/Health Board in UK will have its own local guidelines on treatment/diagnosis of B12 deficiency. I recommend tracking down the local B12 guidelines for your CCG/Health Board and comparing them with BNF, BSH and NICE CKS links.
Some of these local guidelines are not very helpful so worth knowing what you are up against locally.
I hope you are not in UK area discussed in blog post below which has a poor reputation on the forum for how B12 deficiency is managed.
Some local guidelines have been posted on forum. Try a search of forum posts using terms " local guidelines" or try an internet search or submit a FOI (Freedom of Information) request to your CCG/Health Board asking for a copy of B12 deficiency guidelines for your area.
Might be worth looking at my detailed replies on forum threads I've linked to below...
They have lots of B12 info which you may find useful eg symptoms lists eg more on causes of B12 deficiency, more B12 books, B12 websites, B12 articles and a few hints on dealing with unhelpful GPs.
Wow Sleepybunny this certainly is a comprehensive resource list! Tysm, I know those links shall be invaluable in my quest to sort all this out🙏You’re right though that it will take me a while to go through everything and make notes—my attention-span is....not the best XD
If it helps to know, I have never been tested for Crohn’s/Coeliac or anything like that, and there is no recorded history of such in my family (IBS presents up quite often, though...) Plus I have never taken PPI, nor any illicit drugs (just badly-prescribed ones!).
Fortunately, atm I currently have a GP based in Gloucestershire, which has a better track record for B12-related treatments. However, I have recently been forced to move to Wales, which could complicate matters...:/
As for neuro symptoms altering the typical treatment pattern—I have now just finished the basic 5 loading doses over a month, despite presenting with memory/executive function issues and long-term untreated ASD. Does that mean I was given the wrong course, and should start again with more aggressive loading doses? My (young, female, rather distracted) GP doesn’t seem to think that ASD could be connected to PA/B12...
Thanks so much again, can’t tell you how much this will help xx
Hi - welcome to the forum. I am in Germany & don’t know your resource or insurance situation, but I made great progress visiting a Psychiatrist here in Emersacker Dr Christian Timm. He is fluent in English & specializes in biochemical processes. I have ADHD & severe cognitive problems in addition to other issues. He suspected organic causes, took a great deal of blood & sent it to a lab in Berlin. A week later he called and told me my bloodwork matched my symptoms. I think I spent less than 200 euro for his visit. Still waiting on the lab bill. They uncovered a host of deficiencies incl Active B12 (severe), a mitochondrial issue, and a potential intestinal permeability problem. I now have something to support more specialist testing. It took me years to get to this point. My local GP has me on loading doses, but with guidance on this forum I am also setting up to self-inject. There is little to no risk of OD w B12. What the Docs don’t know won’t hurt either of us. 😂. Plenty of self-injection guidance on YouTube. It’s quite common, affordable, & gives you a much a needed measure of control. Wishing you health. 💗
I must admit my heart sank a bit when you said you used to be in Gloucestershire which has a poor reputation on this forum for how B12 deficiency is managed.
See blog post below about B12 treatment algorithm in Gloucestershire which seems to put most people onto high dose oral B12 tablets.
PAS (Pernicious Anaemia Society) is based in Wales and there are two local PAS support groups in Wales. You do not need to have a confirmed diagnosis of PA to join PAS.
B12 deficiency can be misdiagnosed as ME/CFS/Fibromyalgia and other conditions.
Sleep bunny your brainpower exceeds my menopausal brain so much so after reading this eloquent young ladies question it got my brain ticking over (it can be heard for miles) as a nurse we now have a fair understanding that a severed deficiency in vit D in a mother causes type 1 diabetes in their babies (alongside genetic) could it be possible a pregnant mum can be deficient in b12 baby is born severely deficient because of this but wouldnt test positive on IAF test because it’s obviously not autoimmune. I know in this case there are other factors that need addressing like probiotics and the pyloric stenosis op may have caused some issues. Also going gluten free for at least 6 months may give some answers but it did throw up some questions about maternal levels causing issues?
Yes, is well documented that babies born to B12 deficient mothers have a lot of issues. What a-wonderful-seed describes as her symptoms as a baby do seem to fit with that - sleeping a lot, pale, atonia, digestive issues...
a-wonderful-seed have you seen this video about B12 deficiency? It includes a case study on a baby with deficiency.
That documentary is eye-opening, and drives home the severity of everything with which we’re dealing. It’s lucky there are still fantastic doctors and scientists out there on the front line putting the pieces together. I’m hoping my GP will take a look at the docu if I send her a link, and maybe feel galvanised to help me sooner rather than later. I don’t want to take any more chances or delay further...:/
As for symptoms in kids—beyond the muscle weakness, fatigue, clumsiness and ASD symptoms, I didn’t have a lot else going on from the list (in fact, I walked and talked early, and taught myself to read before starting school). It would be so fascinating to know if my deficiency has roots in childhood, or came along later. On reflection, I’m wondering if it could have had something to do with fairly invasive dental work I had as a teen (extractions and braces, using numbing injections and gas), as I have heard that such procedures can deplete B12.
Parlay I am seriously considering dragging my Mom in for testing!
That’s a lovely name. I am so sorry to hear what you have had to experience and go through to get this far. When we start to unravel our history it is amazing what we have simply put up with and what is our ‘normal’.
I’m not going to add to the information but sending support.
Well you’ve been given some great references and information by sleepybunny , which I really cannot add to .
Have any of your medical advisors ever mentioned CFS ( chronic fatigue syndrome )or M.E .( Myalgic Encephalomyelitis ) which also exhibit some of the symptoms you mention .( VitaminB12 injections are one of the treatments , amongst others )
It’s great that Vitamin B12 cannot be overdosed . I have to self - inject weekly to keep symptoms at bay . Yes , self -inject , because my GP would not give me injections more regularly than 3monthly , and weekly is what I need to achieve that . I know P.A. patients that have injected daily for years . It’s possible to get the ampoules from certain German online pharmacies , because no prescription is required . ( how enlightened !)So, that’s a possibility if you ever need to know ………..
P.A. is definitely a “ Cinderella “ condition in the NHS , and Gloucestershire is one of the worst counties for treating P.A.( Its where I live ) They only give 5 loading doses instead of the guide-line of 6 ! I was left for years with my symptoms -I won’t bore you with details !
If CFS/ME is ever mentioned , then Wales is the place to find Dr. Sarah Myhill , who has made it her life’s work to help these patients who are largely ignored by the NHS , and looked upon as being mentally , not physically unwell . She has written a book about this condition . ( Amazon — CFS/ ME - It’s Mitochondria , not Hypochondria ) She is up on the Welsh /English border near Knighton -She has a good website.
I’m rambling on rather , because our marvellous sleepybunny has given you so much to explore. You now have your work cut out to get through it . But you could not get better advice .
You are entitled to ask for copies of your medical records so you could use that to get details of what exactly your B12 levels were - and also what other test were done that leave your GP so sure it isn't PA.PA is a bit of a misnomer as it is actually an auto-immune disorder affecting the gut - so anaemia isn't always present at diagnosis. As the condition can also affect iron absorption it is also possible that iron deficiency could mask the macrocytic anaemia.
The current test for PA as the cause of a B12 deficiency is not very sensitive, with the result that it gives false negatives 40-60% of the time (exact %-age depends on the exact test methodology) - that means that a negative result really can't be used to rule out PA as the cause of a B12 deficiency and the BCSH guidelines actually refer to IFAB negative PA as a result.
Suggest that you share relevant details from the guidelines and ask to be treated in accordance with their recommendations, particularly if your GP has no other explanation for what caused your low B12
you could also suggest that they take a look at the area of the PAS website specifically aimed at helping medical professionals improve the diagnosis and treatment of PA (and other absorption problems).
Hi! Wow what a tough story you have. I had so many of the same symptoms - coming in my 30s not as a child. I found recovery via B12 injections (I do them myself daily), going gluten free (already dairy free) and conversely to you the Pfizer vaccine first dose gave me a massive boost to clear the last bit of fatigue! Suggesting mine was immune system related (I had been working on it being adrenal/cortisol etc for years). I found my GP wasn’t helpful over my 7 years of being ill, and the only person who did useful tests and listen to me was a functional nutritionist. Hope you get some improvements soon. My advice would be to trust your instincts, whatever the GPs tell you. They just told me I had Chronic Fatigue Syndrome and to live with it. I wasted a few years doing just that and was bed bound.
Welcome a wonderful-seed, 😀sleepybunny has given you a comprehensive list to work your way through the only thing I would add is please consider becoming a member of PAS , I found them to be a great help when I was first diagnosed with PA and was having problems getting any information from the medical profession. Good luck and good health
Ok, I’m back! How is everyone feeling tonight? I hope well🎃
It’s been a busy week at work, and I’ve been voraciously reading all these resources you’ve collected in any spare time. This is a heavy and complex health issue that has depths I didn’t even realise...
Thanks so much for all the information and support so far; all of your information and encouragement really does mean so much, especially after being lost out in the cold for so long in regards to health. It’s lovely to know that strangers linked by one common challenge can band together in such a way.
Thank you especially for the well-wishes and encouragement @Narwhal10 (that’s a brilliant name, too!), Nackapan, wedgewood & pitney. I share and feel your frustration with this pesky condition!
If it’s not too much trouble, I do have follow-up questions, in response to all I’ve read in the replies and in the links you’ve provided. Knowledge is power, after all, and I certainly feel better and more capable since learning what is going on with my body.
Currently, my aim is to go into my upcoming next GP appointment (only a short ten-minute phone call, so time is of the essence!) primed to argue my case for diagnosis and treatment, and not take no for an answer. As I’m not the most assertive, I think that facts and pinpoint requests will bolster my case.
So with that in mind...
—re. talking to a GP: what have you all found to be the most convincing stats/resources/articles/personal data to pass on to your provider, when angling for a diagnosis and prescription? And what do I need to request from them as a priority without getting lost in the weeds? (I.e. IF/IFA/Gastrin/Coeliac) How did you insist on BNF guided treatment in the face of resistance? What should I insist is written in my notes, and what do I do if my GP will not comply? And will a GP necessarily need/want to see a comprehensive symptom diary as a matter of course? (I only have a sketchy one on paper, no room on my old phone for a tracker)
@Gambit62 regrettably the guidelines for my area seem to be the awful ‘5-jabs-for-a-month and a pat on the head’ (as wedgewood and beginner1 describe), so no joy there. And oddly my GP was happy with my levels of ferritin. Nonetheless I shall demand copies of my records, and perhaps post them here for some insight. Throughout my reading, I have been shocked to discover how faulty the testing is for PA and B12 deficiency—is this because there’s simply no money in it, or it isn’t a glamorously tragic condition?
@wedgewood neither CFS nor ME have been mentioned to me as possible underlying causes, and honestly I hadn’t considered either. Certainly I shall investigate. It’s possible, given my stress responses tend to be disproportional sometimes, and I used to drink enough black coffee to down an elephant (can barely touch the stuff now...) Though I am conscious of Sleepbunny’s reminder that PA is often misdiagnosed as either of these conditions.
@SigNi it seems to me that Germany is more forward-thinking when it comes to psychiatric health than the UK. To take myself as an example, I have been in and out of therapy rooms for depression for the past decade, and not once has a biochemical cause been suggested to me beyond basic ‘take pills for serotonin levels’ (to which I never acquiesced, thank goodness).
—re. local guidelines: what is the protocol for cross-border treatment when it comes to Cobalamin? (I ask as I live in Wales while my GP is in England) Will it be necessary for me to switch clinic instead, and if so do I have to explain/present/argue my case to a different GP from scratch? I fear this is going to be highly likely, as Sleepbunny pointed out (due to the ancient and inept guidelines of Gloucestershire Health..) How long does it take to re-register? (Hard as it is to believe in this day and age, I’ve never switched GP surgery before)
—re. self-medicating and follow-up care: which sources have you found the safest and most reliable for obtaining injectable hydroxycobalamin and needles/syringes etc.? How/where do you request sharps boxes for disposal? Is it necessary to place orders now in time for Xmas/New Year? (perhaps you could advise on the specifics, @wedgewood and SigNi?) Is it wise to let a GP know that one will be going this treatment route, or ought one ideally keep it fairly quiet?
—re. the PAS: have you found it more useful to join a local support group, or talk to someone on the helpline? Do the support groups require active regular meet-up and discussion, or is it as-and-when? And at what point in the process of seeking treatment should one go directly to the PAS?
Thanks for reading, I appreciate it’s a lot. I have my notebook to hand...
All my gratitude again, and wishing everyone a fulfilling week to come,
Forgot to add that I looked up my local health boards for more information.
The PCT/board for my current GP surgery is impossible to find online for some reason, so I’m going to have to ring my practice in the morning and ask them directly from whom and where they receive guidelines.
The board where I currently live is the Aneurin Bevan University Health Board, from whom I am still awaiting a response about their guidelines.
Sadly, according to this document I found from the All Wales Medical Strategy Group, it would seem that NHS Wales have budget concerns pushing them to advise health board against prescribing injectable or liquid B12 (Ketovite is the brand product named) if it can be helped, and for current patients to undergo frequent review of their treatment and to cease if any improvement shows (even incremental). Not good enough, really, is it?
Good luck with your appointment😀 I would just give as much information as you can in your given time slot and anything you dont have time for offer to put it in witting or print off and offer to send to your GP and ask him/her to read it. We have all tended to get different responses from GPs some good some bad and some enough to make you😭 it is so different from person to person and in some cases people have changed their doctor to try and find help from elsewhere. You really do have to take things one step at a time but stick to getting your questions answered if you can. Covid has caused disruption to some group meetings but some I believe are using zoom meetings you could have a look at the PAS website and see what is happening in your area.
You may find it helpful to post your recent updates as a new post. Responses on older threads can get missed. I think you'll get more comments that way. You could include a link to this thread on your new thread.
"I’m wondering if it could have had something to do with fairly invasive dental work I had as a teen (extractions and braces, using numbing injections and gas),"
Did you have nitrous oxide administered during dental procedures?
I think PAS support groups have not been particularly active during pandemic. Not sure if face to face meetings have restarted but possible that some groups are meeting online. I know people who have found meeting with those who are also suffering from PA invaluable and a good place to exchange information.
I'm sure PAS could tell you more about the support groups.
"my aim is to go into my upcoming next GP appointment (only a short ten-minute phone call, so time is of the essence!) primed to argue my case for diagnosis and treatment, and not take no for an answer"
You may find it easier to express concerns in a letter as some GPs find it hard to cope with assertive patients and may become defensive. I had some very unpleasant experiences.
A letter is harder to ignore in my opinion. See letter writing link in one of my other replies.
Whether phone call or letter keep it polite (even if they aren't) and not too long.
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B12 injections at 'beauty' clinic
Sorry long post
is active b12 a better indicator than free b12
Checking b12 levels while supplementing?
Methylcobalamin
