I am B12 deficient (which was initially suspected in December 2018, following declining health), with prior 6 month history of worsening peripheral neuropathy, worsening exercise intolerance, syncope and frequent pre-syncope and long standing (at least until I started on B12 replacement in December!) mental health issues as a result of this. I recently (April 2019) tested positive (privately) for Gastric Parietal Cell Ab's (but was negative for Intrinsic Factor Ab's in December on NHS testing. The NHS didn't test my GPC Ab's at that point however).
I was initially NHS prescribed 7x alternate-day Hydroxocobalamin loading dose injections, and massively improved within those first few weeks (eventually with full resolution of the neuropathy within 6 weeks). Long story short, I ended up self-prescribing most of my SI's from there on out as the NHS 1) refused to acknowledge my neuropathy or treat me accordingly for it (and also refused to refer me to neurology, however after much persistence my GP did eventually contact neurology for an opinion after several weeks of B12 treatment, and neuro replied essentially stating that "we wouldn't have started from here, the patient should have been tested for Homocysteine and MMA before initiating treatment, however it's too late now". I continued injections every 2 days, for 2.5 months. After fractious discussions with my GP, I agreed to try to reduce the injection frequency with an end-goal of every 2 months (as per NICE guidelines for those with neurological involvement). At the end of the day, I don't enjoy having to inject (discomfort, inconvenience etc.), however it does make me feel relatively well and energised, provides mental clarity and prevents most of my symptoms from relapsing. My GP doesn't believe I have PA or even a true B12 deficiency, and thus is extremely unsupportive and ideally want's me to cease the injections entirely as she believes all of my problems are simply caused by anxiety.
However, ever since agreeing to reduce the frequency I have been on a roller coaster ride of relapse. My last alternate day injection was on 21/03/19, and I managed to leave it 5 days before the next one on 26/03. I was then encouraged to leave it longer before the next, and managed to drag it out for 5 weeks- which in hindsight was at least 2 weeks longer than I should have done, as my mental health (mood stability, depression, brain fog) returned with a vengeance, along with dizziness, balance issues, extreme fatigue and exercise intolerance. I wasn't very physically active during that time as I was feeling pretty run down. It took me those two extra weeks to realise (after all, the brain fog and tiredness made it difficult to realise what was going on!) that I had probably relapsed again because of a lack of B12- however, I was constantly questioning myself as to the validity of needing it again so soon because absolutely noone I have been treated by in the NHS supports a) my need for supplemental B12, or b) the fact that I clearly have a deficiency or c) thinks that I should need it any more often than 3 monthly at best! My GP has been horrified that I've been having it every 2 days for almost 3 months, although she did eventually agree to prescribe it on alternate day frequency for one further month, before trying to cut me down. I started injecting again around 10 days ago and felt very well again after 3 injections over 6 days (however I didn't really feel any improvement until the day after the 2nd injection). I felt so well in fact that I started cycling again (*proper* exercise), and I also volunteer as a bicycle mechanic (which is pretty physically demanding and I'm on my feet all day long) for a local charity and was able to start doing this again. However, the effect didn't last- I cycled 40 km into the bike shop on Tuesday morning this week having had an injection on Monday evening, and I felt great during and after the ride. However, by 2pm on Tuesday afternoon, I was feeling foggy, a bit off balance, less energy, a bit spacey etc. All of the signs that I get when I haven't had enough B12. I would usually cycle home again at the end of the day, however I've finally learnt to listen to my body and I called in a lift home, as I knew else that I would force myself to ride home and really make myself much more ill in the process (I've been there before a few times these last couple of months). I then felt awful for the rest of the day, but didn't really make the connection that this further acute relapse on Tuesday afternoon could be B12 related again, given I had only had an injection on Monday evening!. Having slept (badly) on it, I decided to give myself another injection this morning (Wednesday), and by late this afternoon today I've definitely already noticed a big improvement in my energy levels and mental clarity. I certainly don't feel fantastic, but I already feel a hell of a lot better. My MCV had dropped back to 93 after the 3 months of alternate-day injections, previously having been 98 at peak prior to any B12 injections. However, in early April, only 2 weeks after reducing the injection frequency, it was already back to 98, however it hasn't been checked again since that time.
I *KNOW* that I feel better with regular Hydroxocobalamin injections. I also know, from vast experimentation, that sublingual sprays and lozenges seem to offer no benefit to me. The only delivery route that I know to work so far is injection (intramuscular). I'm a 33 year old male, keen cyclist (mainly endurance cycling, when I am well enough) and have a physically demanding "job" (volunteering two days a week to rehabilitate myself and give something back to the community). I haven't been able to work for 18 months due to all of my illness, however I am actively trying to get well enough again to return to paid employment.
I am so confused because I that I know that regular B12 HoCbl injections make "me feel alive" and allow me to function, exercise and work, however, I am concerned that I am requiring them on such a regular basis in order to sustain this. Even alternate-day frequency doesn't seem to be enough to sustain my lifestyle at the moment (considering the physical activity), although during periods of inactivity (due to illness), I seem to be able to go much longer between injections. I'm really unsettled by the fact that the NHS are starting to treat me like a drug addict re. B12 injections, and they are insistent that I shouldn't need it this much (if at all in some opinions!). I'm also really annoyed about how they went about (not) testing or diagnosing me correctly in the first place, and thus I feel constantly on the back foot now and at a significant disadvantage when trying to discuss it due to what I believe are significant failings on their part.
I appreciate that I am probably answering my own question here, however I really need some reassurance from fellow sufferers because I feel so alone in this battle. I am better with regular HoCbl injections, even daily frequency (with my physical activity level) seems to suit me best, however even then I feel like I'm "addicted" to them! And then all of the doctors I've seen seem to think I don't need it at all (because I was negative for IF Ab's, which we all know is often false negative due to test insensitivity). If anyone can please help calm my nerves on this, comment on my injection frequency and the potential need that I seem to have for more frequent B12 due to my exercise and physical activity levels etc.?
I'm also really keen to seek out and try a HoCbl patch to see if that will allow me to back off on the HoCbl injections frequency and help to better smooth out the peaks and troughs of B12 delivery. Oral, sublingual and spray B12 supplements seem to do nothing for me (I know HoCbl (combined with AdoCbl) agrees with me best having tried some sublinguals, however there was very insignificant benefit from them), and I did try some MeCbl sublinguals back along and they gave me some pretty significant over-methylation symptoms and I've avoided MeCbl ever since in all forms). I've looked into HoCbl patches and cannot seem to find a pure HoCbl patch. Can anyone recommend a source or comment on their own experiences with their efficacy please?
I keep a regular eye on my cofactors such as folate (B9), iron and vitamin D and always try to maintain optimal levels. As a result, I also take daily supplemental folate (as 800 ug Folinic Acid, which agrees with me best due to MTHFR gene issues), along with a suitably strong multivitamin (including B Complex and D3) and mineral etc. I'm still on daily high dose Ferrous Fumarate equivalent c. 200 mg iron (GP prescribed for only a month in February to "shut me up" after my ferritin fell very low and I started loosing vision upon standing and was even more tired (ferritin was 95 pre-B12 injections in December, fell rapidly to 40 by January), but then GP discontinued it. I then purchased my own online and continue to monitor my iron levels, however progress is slow) to try and further improve my iron levels (my ferritin and transferrin saturation was still lower than optimal when tested in April). I'm utterly convinced I have an absorption issue (and believe my most recent positive GPC Ab's supports that?), which predominantly and correlatably seems to affect B12 and iron absorption. Hence I am hoping that a HoCbl patch may be of some use to me, particularly in the longer term.
Any help and advice gratefully received! Thank you all so much as always.
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tomranson85
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I’m afraid that your doctor”s reaction to your symptoms is an all too common occurrence. We have to accept that the medical profession is for the greater part without much knowledge about B12 deficiency / Pernicious Anaemia. You know that regular self injections are helping you , so there is absolutely no harm in injecting yourself as often as necessary to improve and keep your symptoms at bay . I won’t bore you with my long story about my struggle to keep well even after a firm diagnosis of PA . I also tried every option to keep well -sprays , sublingual tablets , patches etcetera. , without success . I hear that sub-linguals and sprays do help some ., but I read that patches are not successful because the B12 molecule is too large to pass through the skin . Of course a very athletic life-style will place greater demands on your requirements of B12 . Through joining my local PA group I have made acquaintances with many PA patience and it is amazing to hear the differing amounts of injections needed to keep well . One member needs to inject twice a day . , another twice a week . etc etc I need an injection one a week . I have a friend who is fine on once every 2 months. It’s great to hear how you are looking after your health re other vitamins and minerals .
It sounds as if you do have PA . You know how notoriously unreliable the Intrinsic Factor Antibodies year is ( and your doctor should know too ) As you know that injections improve your symptoms , I would just inject as often as needed to keep your symptoms at bay . That what I was forced to do , and I thank my lucky stars for B12 ampoules ! I wish you the very very best .
Hey @wedgewood, many thanks for your kind and supportive words. Indeed, I know deep down that there is no harm in having the injections much more frequently (however of course GP disagrees with this wholeheartedly, "it's addictive and toxic" etc. are all reasons I've been "educated" with by several recent GPs... which we all know is a crock). At the moment I'm back to alternate-day for a couple of weeks, and then will (much more slowly this time) wean myself down to less frequent injections based upon my symptoms and response. Obviously we all want to find the sweet spot of as infrequently as possible, without relapse.
I totally agree re. the unreliability of the IF Ab test, however all of the GP's I've seen are convinced that "negative means negative", they won't diagnose me as "Anti IF Ab Negative PA" as I know they should (re. NICE). I've tried to argue that with evidence, but it falls on deaf ears.
I only received the GPC Ab's positive result via private testing as the NHS haven't tested me for it (I recently had a private liver health screen in London following persisting right-upper-quadrant and right flank pain; diagnosis- gallstones (I'd been reporting these symptoms to my NHS GP for several weeks prior, however she refused to entertain this as a possible cause for my pain complaint, and insisted that I had just pulled a muscle... hence I had no choice but to go private). So now I am armed with that GPC Ab test positive result, backed up with my low-normal B12 level at the outset (and all of the original symptoms inc. neuropathy), and my vast mental health and neuropathy improvement (some other symptoms and problems still persist, however) since starting on HoCbl injections (surely anyone with any sense can see that the B12 is both a) necessary and b) has had an obvious benefit!).
I do suffer with bouts of indigestion which continue for weeks at a time, recurring every 3-6 months, and various abdominal pains and discomfort (it all started with terrible IBS symptoms (undiagnosed; GP at the time wasn't interested) for 3 years about 10-12 years ago), and now suffer with frequent constipation with occasionally the other end of the spectrum of movement (with no obvious trigger). I wrote to my GP recently re. this new evidence, and also the private gallstones diagnosis (I've been recommended for a cholecystectomy), and have a long appointment on Monday to discuss. I feel like I'm constantly battling with my GP however as every time I see her I end up reporting new/changing/digging up historical symptoms (from many years before I moved to this GP) as further evidence, and she just tends to throw her hands up in the air and say words to the effect of "More symptoms! It's all anxiety and in your head". I have also been suffering with often severe left sided chest pain (it moves about, an inch or so below my left nipple area) since November 2018, and to a lesser extent for several years prior to that. The NHS went down the cardiac-cause route for that initially in November (as my resting heart rate was found to be 35 bpm), and I've had 10 nights in Cardiology for monitoring, endless ECG's, an echocardiogram and most recently a CT angiogram with contrast. All of these tests have essentially come back "normal" (some abnormal ECG's, but they just dismiss them), and since the CT angiogram is clear, Cardiology are confident that it's not an issue with my my heart. I have to say now that I would tend to agree. I think my anaemia (suspected as concomitant B12, Folate and Iron- treated, but not formerly diagnosed!) although, not that severe) was probably responsible for a lot of my symptoms between November and March this year, including what originally landed me in hospital. I am however starting to wonder if this left-sided chest and left shoulder blade pain, which I also do not believe is Costochondritis (another potential diagnosis which has been touted), may well be originating in my stomach? It would seem to make some sense, however I haven't as yet approached my GP with this suggestion (however, now that cardiac has been evaluated, it would seem to be the next most likely cause, given the link to potential PA etc.).
I will continue to beat the drum with the GP, however I really feel I am reaching the end of the road with her. I've already changed GP practice once in the last 4 months for this reason, and frankly can't face starting over with that again. No other GP in the current practice is interested in seeing me (unless a genuine emergency) because of the complication; they all just defer me back to her.
Many on this forum find that themselves taking more B12 than recommended in UK guidelines in order to keep symptoms at bay.
"along with a suitably strong multivitamin (including B Complex and D3) and mineral etc."
Have you checked how much of each vitamin and mineral is in the multivitamin? Taking high amounts of Vitamin B6 can cause symptoms and I have read that it is possible to have iron overload.
"I recently (April 2019) tested positive (privately) for Gastric Parietal Cell Ab's (but was negative for Intrinsic Factor Ab's in December on NHS testing."
Is your GP aware that it is possible to have Antibody Negative PA? See flowchart and BSH Cobalamin and Folate Guidelines links below.
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
"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. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
PAS (Pernicious Anaemia Society)
Based in Wales, UK. Offers support and info about PA.
Hey @Sleepybunny, many thanks for your reply. Indeed, I am very conscious of the individual vitamin and mineral contents of the supplements I have been/am now taking. I have, over time, experimented a number of vitamin and mineral supplements, and have adjusted what I take over time as I have become more informed.
I am currently (since last week) taking PERQUE Life Guard Tabsules @ 4x per day (in two divided doses). perque.com/wp-content/uploa...
I selected these after much research, as due to MTHFR I do not get on well with Folic Acid and now know that I cannot handle Methylfolate in high doses either. So I am tied to compound supplements which contain Folinic Acid (Calcium Folinate), and if I have to, also low doses of Methylfolate. Accordingly, Life Guard seems to fit the bill well. It's early days though and I keep a close eye for any new symptoms or changes.
I do appreciate that it does contain a rather high dose of B6 (both as Pyridoxine and P5P), and I am aware of the potential side effects/damage which high dose B6 can cause. I will monitor closely.
I remain on Ferrous Fumarate 2x 322 mg per day (daily equivalent to c. 200 mg non-heme Iron), having self-prescribed that in late January, before being prescribed it in February for 1 month only (so I've now been on it for c. 3.5 months in total). I started this when my Ferritin had fallen from 90, to 55, to 40 in the space of 3 weeks after starting HoCbl injections), and my MVC and RCDW had jumped quite dramatically. I last had a full Iron panel completed privately in early April, and my Ferritin had risen to 103 however my Transferrin Saturation was still low at 33% (all other tests were middle of the range), so I feel it is safe and appropriate to continue the iron supplementation for a month or two yet. I intent to repeat the iron panel in approximately 1 month from now and review from there. I strongly suspect that I will need to remain on an iron supplement long term, however at a lower dose as appropriate to maintain my iron levels in the optimal range. I am (when well enough) very physically active (lots and lots of cycling plus a manual job), and have a history of chronic anal bleeding (which the GP etc. knows about, but isn't interested in), so I know I have a tendency to lose iron. At the end of the day I will monitor and supplement as required to maintain optimal ranges, and will continue to bang the drum as required with my GP on this aspect, as I'm convinced (along with the B12 issues, positive GPC Ab's, symptoms etc.) that it is pointing to a maldigestion/malabsorbtion issue. Unfortunately, my GP just won't hear me on any of this. I do fully appreciate the risk and consequences of iron overload, however according to my most recent test results in early April, I am nowhere near any risk of that as yet.
I have not as yet been tested for Coeliac either by NHS or privately, however our whole household went strictly gluten free around 1 month ago (in support of my wife who has autoimmune thyroid disease, Hasimotos). I can't say that I have directly noticed any benefit from this as yet. However, it will now make testing for Coeliac harder as I would need to eat gluten for several weeks again prior to testing. If I were truely gluten intolerant/Coeliac, should I not be noticing some benefit in symptoms by now? Or it is too soon to tell? I shall bear this in mind also for discussions with GP.
This GP, nor the ones I have seen before, will entertain a diagnosis of IF Antibody Negative PA. They are simply misinformed and stuck up about it! I have tried to discuss this with evidence, however they're having none of it.
I'm already a member of the PAS (and have spoken with Martin before) and do attend the local support group (Somerset), which has been very useful and supportive. However, sadly I'm still banging my head against a brick wall with the NHS and don't really know where to turn on all of this. I feel that getting an acknowledged diagnosis of PA (IF Antibody Negative PA would fit the bill based on current information and test results), and then a referral to gastroenterology would be a start. It's not *just* a diagnostic label I am seeking (although it would help long term), because I am still suffering with symptoms which require further investigation. However, as my GP (and the NHS) have now spent a lot of money on testing/hospitalisation re. Cardiac concerns (all negative), and have also referred me to Rheumatology re. bouts of chronic fatigue, dizziness, losses of vision on change of posture, reduces exercise tolerance and joint pain (all tests so far, negative), my GP is extremely reluctant to refer me to any other speciality and just keeps trying to convince me that "it's all in my head, please try these antidepressants". It makes my blood boil.
The one other diagnostic route that appears to be showing some promise is that of adrenal function. Rheumatology (private referral) suspected based upon my symptoms and negative results for their autoimmune screens, that adrenal function and cortisol issues could explain my problems. Long story short, they asked my GP to arrange Cortisol and ACTH testing, and then if abnormalities were found, for her to referrer me back to NHS Rheumatology for further investigation. However, my GP refused to arrange the Cortisol and ACTH tests, and simply re-referred me back to Rheumatology for "them to deal with" in 6 months time. Again, it makes my blood boil (I'm convinced it all comes down to individual budgets and money). When I went for my private liver health screen in London last month re. gallstones, the doctor (Professor) agreed to adjust the blood work he was doing to be more targeted for my needs- and he included the Cortisol test, as I explained that my GP was refusing to do it (even though she had been asked to by a consultant Rheumatologist!). My 9am Cortisol came back LOW (out of range), and I have since has a Salivary Cortisol Profile with DHEA done, and that also came back low-normal for the morning sample. The Professor stressed that it was very important for my GP to repeat the 9am Cortisol test again because "this cannot be ignored", and it likely explains a number of my symptoms. I am yet to discuss that with my GP on Monday, however I did include it in my recent GP letter last week.
Many thanks for all of your included links; I think I've read all of them in the last couple of months!
I’ve found there’s no substitute for having the right injection frequency. It’s unfortunate that the NHS doesn’t recognise that their ‘one size fits all’ approach does not work for many.
Here’s my story which I’m hoping will help you, particularly as we’re both keen cyclists.
Over 4 years ago the only time I wasn’t tired was when I was exhausted (generally 3pm onwards). I was trying to continue my weekend cycling but was getting less enthusiastic. Luckily I was diagnosed with PA and started on two monthly injections, no loading doses.
My GP was amazed that I felt no difference after the first injection as she thought I’d then be fine. If anything I was worse at the start of treatment and remember turning back from a proposed long ride after only 8 miles. What really shocked me was that I was so exhausted I then spent the whole day in bed. I’d never done that before.
After several months and a few injections I began to realise my energy levels did pick up but after 4-6 weeks tailed off again. A different sympathetic GP suggested I have monthly injections and that regime almost gave me a my life back as I was back to cycling regularly. However, I was still a bit up and down with a tailing off of energy levels towards injection time.
So after 18 months/2 years I decided to self inject as and when needed and very quickly established that if I inject weekly on a Saturday I’m good for a bike ride with both my Sunday and Wednesday groups.
Things I’ve learned? I recently had a long ride on a Friday and was under par from the start so next time I’d do my injection Friday morning rather than waiting for the usual Saturday.
Also I’ve learned, if I push myself too hard there’s a payback and I go backwards. Last week I was in Majorca with my cycling group and cycled a lot of miles pushing myself hard on some days. I gave myself an injection midweek just in case. I’m paying for the miles and the mountains this week and am generally tired and lacklustre and gave both Sunday and Wednesday groups a miss.
Generally I do stay within my limits and went against my own advice to myself last week. It’s frustrating when I want to push myself harder but I console myself with the fact that at the end of the day I have an illness and I’m so lucky that it’s almost cured by a weekly injection.
I hope my reply has shown that time and patience and most especially the right injection frequency can give you your life back. Good luck!
Hey @JanD236, many thanks for your response, which is indeed close to my own heart and inspiring. I think it's fair to say that I used to be as keen on the bike as you are now, however I haven't been able to get back to anywhere near that level of activity since October last year. I'm not at all convinced that my only problem is B12. I'm fairly sure (as I've replied above) that I also have adrenal function issues resulting in low/abnormal cortisol. Before I became ill last year, I could cycle for many hours on end and really enjoyed it (of course, it was hard, but it was enjoyable- and I didn't feel like death either during the ride or at the end of it). Now (and for many months now), some days I can only manage 30 km, some rare days 80 km- but really no further. I often become dizzy and disorientated, slightly blurry vision and painful eyes, and utterly exhausted during/after physical activity (and it's definitely not the bonk/low blood glucose- I monitor this), and this feeling stays with me for many days post-activity. I used to ride 5-6 times a week, now I can barely manage 1-2 short rides a week. It's heart breaking. I've returned to and am continuing B12 injections on alternate days at present; it's definitely having an improved impact (energy levels are "better", mood stability is "better" etc. however it's not solving the whole problem.
I just can't seem to many any progress with the NHS on this. I still don't even have a formal diagnosis of PA of B12 deficiency; the "discussions" are still on-going. My GP (and all of the others in the practice) can just be so argumentative and dismissive; they're wasting so much of their own time and money, not to mention my own, by not listening and trying to tell me it's just "all in my head".
I'm seeing the GP on Monday to discuss a) private gallstones diagnosis and recommended cholecystectomy, b) LOW cortisol results and the need to repeat tests and refer as required, c) recent private Gastric Parietal Cell AB's positive test result (adding some additional weight to my symptoms and B12 issues). Really not looking forward to it. Last time I saw her she had me in tears because I just feel like I'm taking to a brick wall, and that she has reached the end of what investigations she is prepared to do. Her attitude (which stinks) is essentially "so far, everything has come back pretty normal, so we just don't feel we should look any further. And besides, if you keep looking, you will eventually find something, and then a doctor will do some procedure to you and it will hurt you. I've seen this happen before!". But what IF that is necessary to make progress and give me my life back? I just don't know where to turn.
Must just add that I also had horrible gut problems , similar to IBS .-awful bloating , nausea and stomach aches . A gastroenterologist told me that PA patients have low/ no stomach acid (Achlorhydria/Hypochlorhydria ) I read up
about this , and I found that this upsets the stomach flora , enabling bad bacteria to dominate , causing those horrible symptoms . There is no NHS treatment for this . I found that a water-based probiotic called Symprove helped me enormously . I now try to use some sort of fermented foods daily eg natural joghurt , organic raw sauerkraut etc . You can make these at home . There are also pre and probiotic capsules available . We do read now how important it is to keep our gut bacteria in good order . Thought I should pass this on .
I hope you find the answers you need soon. In the meantime I’d just say that my recovery took 18/24 months. During that time your description of how you feel now is exactly as I was feeling.
Hi there, your story is similar to mine except that my PA has been diagnosed. After my health started declining further following about 18 months of monthly injections (no loading doses) my gastro doc agreed to loading doses and my depression immediately lifted. She prescribed monthly injections after this but I decided to self inject as I couldn't risk the depression coming back. Two months later my MCV was still at 99 but other blood counts had improved, three months later my legs weren't hurting anymore and my MCV went to 93. What did I do next?, instead of continuing I began spacing the injections out (because I wanted to please my doctors). Six weeks later my MCV is back to 99, blood counts are all down and I feel lousy. I'm back to square one and self injecting every other day.
I too have a gastric issue, a breath test showed I have either malabsorption or extremely high small intestinal bacterial overgrowth (Sibo)., I understand that with this problem my body and the bacteria compete for any B12 in circulation, as I have PA this is a problem. You don't say if you have gastric symptoms, if you do I strongly recommend that you try to see a good gastroenterologist who might be able to shed more light on the situation. BTW I've tried all of the antibiotics available for Sibo and nothing shifts the bacteria, I now refuse further testing as it involves ingesting sugar which feeds the bacteria making the situation worse.
Hey @expatkerry, many thanks for your response too. Indeed our stories do have some close similarities. We seem to share the depressive symptoms which crept on over a long period of time, and that lifted (along with the brain fog?) after a couple of weeks of loading doses (this was life changing for me after many years of battling mental health issues, which mostly seem to be related to the B12 in my case!).
I think my main issue is that the GP's around here (and I have seen many) have just labelled me as a trouble maker based upon years of depression and mental health problems, and that this has "cost them a lot of money and time". And now they're so close minded that they are not prepared to acknowledge that there appears to have been a genuine underlying cause (B12), even if it was sub-clinical by their silly wide-reference-range test standards! "A test is only a test" (so says my most recent GP!), yet she is totally ignorant about the fact that I may well be (and appear to be!) one of those people who needs a much higher level of circulating B12 in order to function. It's the ultimate irony, in that when a test result suits them, they will go along with it. But yet when a patients symptoms disagree with the test result (yet they benefit from a therapeutic trial of B12 injections, and make a partially remarkable recovery), they won't even acknowledge the possibility of the test result not being a true reflection of the situation and still stand by the "you were never deficient anyway!" argument. So, why, after 3 weeks of loading doses did I feel like I had a life back? Go figure... B12 certainly hasn't solved all of my problems, but it's made a big, BIG difference.
Just like you (trying to please the doctors), I reduced my SI frequency, only to see my MCV and other related values start creeping the wrong way again (of course, they were all still "in range", however I felt much worse as a result). It certainly seems that I do need the injections more often than the NHS/NICE acknowledge, and thankfully I had the mindset to self-prescribe and SI where required to make this happen (on top of the NHS 2 monthly doses). It pains me so much however that the NHS are so ignorant to this.
Indeed, I have a history of gastro symptoms too. 10-12 years ago I had terrible IBS-type symptoms for almost 3 years. My GP at the time wasn't interested however, and just insisted that I use OTC medications to ease the discomfort. It didn't help much and I was frequently running for the nearest toilet, or worse. It had a massive impact on my life. The awful IBS eventually eased after several years. More recently, over the last few years, I've suffered with bouts of indigestion and abdominal pain/burning. These bouts often last for several weeks at a time, and then ease. OTC's have helped with managing the discomfort. Again, GP's haven't been interested over the last few years of me reporting this periodically. During the last 6-8 months, I've suffered with left sided chest pain (it moves around a bit, but is most often around an inch or so below my left nipple). It is a dull, burning pain, and sometimes becomes more intense and stabby. It has been confirmed after extensive tests to NOT be cardiac in nature. I suffer from frequent constipation, occasional diarrhoea, and I have ALWAYS suffered with huge volumes of gas (down below). I experience occasional bloating and acute stomach pain, in addition to the pre-described chest burning pain. Most recently I have also been privately diagnoses with gallstones, with associated pain on the right side and right flank. In the last month I have voluntarily gone strictly gluten free (in support of my wife, who has Hasimoto's).
Can I enquire as to what tests you were offered/requested before being referred to gastroenterology? I feel that I need to get my GP to take this more seriously, and the first place to start would be to request the most appropriate further tests to try and get some purchase on this issue. I have often wondered if I have an h.pylori infection or similar (I did a private h.pylori stool test at home, which was a clear negative- not sure how reliable that though).
Hello again! I had a glucose breath test which measures the amount of hydrogen and methane you produce after ingesting glucose, after years of IBS and weight loss (like you constipation diarrhea etc). It was sky high. I was given rifaximin a very expensive American antibiotic but it didn't work. Previously long periods of high protein sugar free diets had given me long periods of respite but even that no longer works. So I paid for a comprehensive stool test, I live in France so I used a Belgian company. It revealed that certain strains of bacteria had become virulent, which explains why I can't get rid of it. When the bacteria behaves like this it produces enzymes that break down red blood cells amongst other things exacerbating my P A. Unfortunately the only advice the biochemist who did the analysis could give me was dietary and as I have become intolerant to lots of food (more enzyme activity), I can't follow it that well. I believe my Sibo is complicating my PA as monthly injections would normally do the trick but I need a lot more. I'm hopeful that the increased doses of B12 will be therapeutic as a recent study on pubmed showed that excess B12 reduces the bacterial load in the microbiome. Stools tests like this are available in the UK. I wish you the best of luck. PS :change your GP, I too have been labelled 'difficult' but you will eventually knock on the right door.
Hey again! Your story and experience is very interesting. I have often wondered about SIBO, because to a large extent it fits my symptoms and complaints. I too have considered a (private) comprehensive stool test to get to the bottom (no pun intended) of this, however the sheer cost is rather off-putting (and quite frankly, I think the NHS should be dealing with this!). I do wonder if I may need to reevaluate that option again however, depending upon what is said on Monday. I reckon my best chance is a gastro referal, because my GP won't want to pay for the tests out of her budget (it's already been made pretty clear that this is how the land lies now). I wouldn't at all be surprised if making some targeted dietary changes would assist me, however without some appropriate test results and guidance from a professional, it's a case of not knowing where to start. I am already GF, but of course I appreciate there is a lot more complexity to it than that, as you have outlined re. enzyme activity. I think more than anything I am utterly frustrated and annoyed with the complacency of the GP's I've seen, and the NHS in general, who seem to be quite happy to let me (and others) suffer.
At least I can't go wrong with excessive B12 injections (it's the only delivery route which seems to have any noticeable impact on my symptoms, sublinguals/sprays don't seem to achieve anything, which does rather help confirm a gastric issue in its own right in my thoughts). I just don't believe it's the whole solution to my issues, and I really need a doctor to listen to me on that!
You're certainly not the first person to say change my GP again. I don't seem to have any options to see a different GP in the current practice, as I'm labelled as a troublemaker and the others just defer me back to my own GP as quickly as they can get me out of the door. So that leaves me with the only option of changing practice again, and that will be to the third and final practice in our catchment area. It may well be necessary...
I know what you mean about the cost but I was desperate as I've even lost my job due to this, but at least I have medi Al proof that all is not as it should be!
I feel for you! We lost our own family business (IT consultancy), our previous home and have lost so much of our savings as a result of me becoming long-term sick (almost 2 years out of work, since we had to cease operations of our business). Out lifestyle (and financial situation) has totally turned upon it's head as a result of these health problems. We're now utterly reliant at this time on state benefits, I have been so ill (earlier this year) that I became registered disabled with associated benefits (frankly I think I would have qualified as far back as mid-2017 for disability benefits, but was too proud to admit it). I'm just desperate to manage these conditions, whatever they may be, and rehabilitate and get back to work. When I feel well enough, I now volunteer as a bicycle mechanic for a local bike charity, and am hoping to consistently become well enough (it's the lack of consistency and frequent relapses which are so hard to deal with) to go back to work as a part-time bike mechanic. I don't want to be, nor is it comfortable, for our family (wife and 5 y/o boy) to be reliant on benefits and not able to work. My wife lost her job earlier this year when I really needed her to care more for me, and she hasn't been able to find work again since.
So sorry for you, your story is so like mine, I too am now registered disabled but my situation isn't as catastrophic as yours as I'm near retirement and don't have a young dependant family. If your problems stem from sibo or dysbiosis I would advise you to look into the diets recommended to alleviate or even irradicate the problem. A referral to a good gastroenterologist would be a good start. Good luck with all this. BTW I've started meditating and find it really beneficial.
"This GP, nor the ones I have seen before, will entertain a diagnosis of IF Antibody Negative PA. They are simply misinformed and stuck up about it! I have tried to discuss this with evidence, however they're having none of it."
My understanding is that in UK, letters to GPs are filed with patient's medical records and are therefore, in my opinion, less likely to be ignored.
"and then a referral to gastroenterology would be a start"
I used to request referrals in a brief , polite letter to GP along with evidence that supported the request eg symptoms, personal and family medical history, test results and extracts from UK documents.
"However, as my GP (and the NHS) have now spent a lot of money on testing/hospitalisation .... my GP is extremely reluctant to refer me to any other speciality "
"Last time I saw her she had me in tears"
Empathise totally w ith your situation. Eventually one GP practice became fed up: I was told I was costing too much money and pressure was put on me to leave.
I was regularly in tears, it was the lack of compassion that did it to me.
Have you considered contacting HDA patient care trust ?
They are quick to respond to enquiries.
HDA patient care trust tel. 0207 935 8366
Are you able to consider private treatment although this is no guarantee of better treatment?
Ignorance about B12 deficiency exists in the private sector as well as NHS.
It really sounds like we share some common ground here
Indeed, I have taken (been forced...) to put my thoughts/requests in letters several times over the past 8 months, after my concerns were being dismissed in fact to face consultations (and as you say, the complete lack of compassion).
I've already left one local practice (the one which initially agreed to prescribe me a therapeutic trial of B12 in December, which was prescribed by one of the practice GPs, not my accountable GP). Even though there was a remarkable improvement in my symptoms over that 3 week loading dose trial, and the prescribing GP saw that first hand (most notably, my depression and mental fog totally lifted, and I felt like a new man for the first time in living memory), my accountable GP (senior practice partner, who I rarely saw) simply withdrew any further B12 treatment (which I only found out when turning up for the next injection with the nurse (poor nurse who broke the news to me)) without even a phone call, letter or consultation with me, stating that "there was no clinical grounds to continue" (because my initial pre-injection B12 level was only low-normal at 278 and "in range" (120-650)). She even insisted on retesting my B12 level after the loading doses (which we ALL know they shouldn't be doing), and then simply stated "your B12 levels are now off the charts! You definitely don't need any more! And your IF Ab's was negative, so you don't have PA. Also, we're not giving you any more B12 because too much is toxic and can cause cancer"). None of the GP's at that practice would even acknowledge or test for my reports of neuropathy symptoms (even though I was tripping over in the street, stumbling around, had no balance etc.). I insisted that they contact neurology as per NICE guidelines, which they did, and neuro wrote back saying that my initial level of 278 wasn't low enough to confirm an issue on it's own, and they wouldn't have started from here (they wanted to offer homocysteine and MMA testing, but it was too late now as GP had already prescribed B12). It felt a little like neuro was on my side here (the GP paraphrased her explanation of their letter to me to paint it in a good light for the GP's benefit, however I obtained a copy of my records and the letter in question, and it was clear from the wording that neuro were not pleased with the GP's approach, and that now the door was somewhat closed for further testing, although they didn't outrightly state to continue injections, but suggested "the patient may benefit from B12 supplementation".). And this was all back when I was less informed. I was eventually at the end of my tether, did a lot more research, joined the PAS, and decided to self-inject (which I started 2 weeks later upon receiving B12 from Germany).
Of course, this all made starting with the new practice in January all the more difficult, because of the notes on my records, the lack of any formal B12/PA diagnosis, and the fact I had switched practise mid-way through an active issue. I had to argue to get B12 prescribed again (mainly based on my personal reports of significant improvement in symptoms, along with more recent improvements in neuropathy, however as far as the new GP was concerned this was all "hear say", as they didn't know what I was like before or how ill I had been (and hospitalised with the symptoms) in November. This new practice are in complete denial that I could have ever had neuropathy, as I "would have had to be much more ill, because you would only get peripheral neuropathy with SACD, which is much more serious!". I explained to my new GP the brief history, and that due to the massive improvements in my mental health, energy, stamina, neuropathy etc. I had started SI'ing on alternate-days as per NICE guidance re. neuropsychiatric involvement (due to the issues at the previous practice), and the new GP reluctantly agreed to prescribe 15x further ampoules for 1 month at alternate-day frequency, before asking me to reduce to 2-monthly frequency. She still wasn't interested in making a formal diagnosis, refering for any further tests etc. I then did reduce my frequency, to weekly, and then I stretched it out to a full 5 weeks (as I felt under pressure from GP to do so), and my symptoms started to return (5 weeks as way too long, I should have only gone with 2). I'm now trying to recover from that experience, having returned to alternate-day frequency again as of 10 days ago (and am already feeling much better, in *some* respects, but not all).
I did call the HDA Patient Care Trust about 6 weeks ago, only to receive an answerphone message stating that they wern't taking any new patient applications at this time. I haven't followed it up since.
We're really not in a position to pay for any more private treatment, other than the odd blood test for progress monitoring and supplements here and there. Out of pure desperation, we've spent over £1500 on private consultations and associated expenses in the last 2 months re. connected issues (Rheumatology referral from current GP re. my chronic fatigue and joint pain, I elected for private to expedite the process) and due to my GP totally ignoring my gallstones related pain ("you've pulled a muscle!), I paid for a private liver health screen in London, where gallstones were recently diagnoses (and gallbladder removal recommended, which I am to discuss with GP on Monday).
Given all of the existing testing (Cardiology, Rheumatology) has come back negative, I really do feel that the NHS have been looking at this the wrong way all along, and that the root of my issues is most likely gastric. I just don't know how to move this forwards from here, with such a defiant GP who thinks/wants to think (money...) that "it's all in my head". I'm sick of it, but don't know where to turn from here.
I can empathise with a lot of what you have and are going through.
"there was a remarkable improvement in my symptoms over that 3 week loading dose trial"
The BSH flowchart below indicates that UK doctors should continue treatment if there is a positive response even if tests are negative. See right hand side of flowchart.
Flowchart from BSH Cobalamin and Folate Guidelines
"we're not giving you any more B12 because too much is toxic and can cause cancer"
Sometimes comments like this are based on a misunderstanding of research articles.
In third pinned post on this forum there is a summary of B12 documents (last link in third pinned post) that mentions doctors concerns about possible toxicity.
I was told all my symptoms were due to depression and I kept trying to say that my depression was due to my physical symptoms preventing me living the life I wanted to but no-one listened.
I was diagnosed with hypochondria and told my symptoms were psychosomatic. I raised the possibility of B12 deficiency with most of the specialists I saw including several neurologists but only one thought it might be a possibility. I feel very grateful towards him because he didn't dismiss my suggestions like all the others.
I was shouted and snapped at more than once and feel most specialists saw the labels of depression, ME/CFS etc and refused to look at the full picture of symptoms. I gradually tried to exclude other possibilities that could cause similar range of symptoms eg lyme disease, lupus and others until the only one left seemed to be B12 deficiency. I got hold of my blood test results which showed I had been diagnosed with B12 deficiency in past and had had one set of loading doses.
Some of the neuros I saw did not seem to do the full range of neuro tests. I read that proprioception difficulties ( problems with awareness of the body in space) can be associated with B12 deficiency and could not remember any neuros testing this, I don't think I had any neuro tests with eyes closed.
Yet I told them that I felt unbalanced when it was dark or my eyes were shut or someone coming towards me meant I lost sight of my surroundings. I remember how when I was walking about town and someone came towards me I would start to wobble.
No-one would put the pieces of the jigsaw together. Most specialists would only look at their area of expertise but not consider that there might be one cause behind most of my symptoms
Two tests to check proprioception. Vital that these tests are carried out by docotrs at medical premises due to risk of loss of balance.
1) Romberg test
2) Walking heel to toe with eyes closed
I could not get any GP or specialist to take me seriously despite typical symptoms of B12 deficiency because the majority of results were either normal range or negative.
I still feel angry sometimes about nearly 20 years of suffering but try to use this constructively by being active on this forum.
None of the several anti depressants I was given had any effect yet when I finally started to get b12 my mood symptoms lifted. The mental health symptoms start to return within a few weeks if I ever stop the B12.
I sometimes suspect I may have mild PTSD symptoms from the way I was treated by the medical profession.
I think the lack of understanding of B12 deficiency is a tragedy.
To be pragmatic about it, just think of all the money that the NHS could save on expensive investigations, specialist appointments, expensive drugs , mental health care etc if B12 deficiency was better understood and diagnosed.
As far as I'm concerned Dr Google saved my life and led me to this forum. Although I can't have the life I was expecting to have, I can have a life that I enjoy. I still have days when I feel sad about the years that I lost though.
"that the root of my issues is most likely gastric"
There have been some research articles over last few years that suggest the root of auto immune disease may be in the gut.
"10-12 years ago I had terrible IBS-type symptoms for almost 3 years."
Me too but zero interest from GPs, I feel this was unprofessional of GPs. I don't remember being asked any questions about this symptom whatsoever despite me including it on every symptoms list I wrote out.
Just grateful it wasn't bowel cancer...can't believe they never referred me to gastro enterologist. I never thought to ask for a gastro referral myself..I just had so many symptoms and so many "ologists" to see that I couldn't keep track of everything.
A few years ago I decided to go gluten free and my IBS symptoms disappeared. I was tested for Coeliac years ago with a negative result but have since found out I should have had two tests not just one. Learnt that Coeliac disease can be very varied in its symptoms, can sometimes present purely with neurological symptoms and no gut issues.
UK guidelines suggest anyone with negative Coeliac tests (tTG IgA and Total IgA) who has symptoms consistent with Coeliac disease should be referred to a gastro enterologist.
H Pylori
H Pylori can be a very persistent infection. If symptoms continue after H Pylori eradication treatment then further treatment may be necessary or a referral to gastro specialist.
I have a very similar story to yours. I’m 53 and was super fit for years before being diagnosed. I do have a super GP who has referred me for every test under the sun and I’ve learned a few things along the way. I still suffer with upper back pain and I’ve had a full spine MRI. Upper CT, colonoscopy and 3 cameras down my throat. I also had a capsule endoscopy of my small intestines and an MRCP on my biliary tree and an abdominal ultrasound. All of that in a year. What have I found out? Thankfully that I don’t have a lot of horrible diseases for which I’m grateful. What else have I discovered? That as a PA sufferer I have low stomach acid. You’ll know this already but if you have PCA antibodies, which I do, they stack the proton pumps which create acid. Acid is required for digestion and to kill pathogenic bacteria. The signal to the pancreas to add digestive enzymes to your food is the arrival in the duodenum of acid food. Mine arrived there without it and my pancreas doesn’t add enough enzymes so my food goes into the small intestine where it isn’t fully digested arriving in the colon as a buffet for pathogenic bacteria. They feed on it and emit gas, methane and hydrogen which cause the stomachs to bloat. The pathogenic bacteria also cause inflammation. I know I have inflammation because my fecal calprotectin score was 430. Normal is below 50. All structural causes of inflammation were ruled out so it’s bacterial. Like @expatkerry I had a SIBO test done and was negative thankfully. I also had a comprehensive digestive still test done at a private IBS clinic in London which was analysed by an accredited lab. The results showed I had significant amounts of pathogenic bacteria many of which are implicated in autoimmune disease like ankyloking spondylitis. I got tested for HBLA 29 or something like that but was negative. I was out on a special diet and given herbal antimicrobials to take. My gastro doc was horrified I was doing this but I wasn’t taking any of his nonsense. When I robustly defended my position he accepted that it’s an area under research and. Bout which the medical profession doesn’t know enough. When we got over our little difficulty and now a year later he accepts things are working for me. One thing I did discover through the still test was low elastase. This was the proof my pancreas wasn’t producing enough enzymes. So been diagnosed with EPI and now on creon. Still have the back pains and the rib pains and burning pains you describe but they are bearable for now. My bacterial profile is done to just one bad bugger and I’m on a gut repair regime. Many people might think this approach is without evidence but all the evidence I need is it works for me. Good luck and let us know how you get on.
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GP says 'B12 blood test unmeasurable >2000' therefore reducing injections frequency from 4 weeks to three monthly.
B12 injection dosage
Mislaid information
