In a recent pathology test, my gastroenterologist was concerned with my low haemoglobin count and a high reticulocyte count. She mentioned that although I’m low in ferritin (40) I’m not yet needing an iron infusion just yet. My white cell count was seemingly low also and she suggested that I should get a referral to see a haematologist as my bone marrow could be functioning insufficiently for some unknown reason. Fast forward three months, my haematologist’s initial response was to review my medications and any supplements that I may take. Oh great, here we go, again! His very first comment was my very high serum B12.(from a pathology test last year) He asked what my current B12 treatment is (I SC every day) and he suggested that I should significantly reduce my treatment (maybe to once a week or once a fortnight) as too much B12 can be toxic to the body. I mentioned that my neuropathy will return along with all the other symptoms that I have experienced in the past. He mentioned that my high reticulocyte could be contributed by too much B12 in the system. Towards the end of my consultation, he handed me another pathology request form with 10-12 items to test for various blood conditions/clotting disorders and, the best bit, HoloTC and serum B12 yet again!! After I was insisting that this would always be high since I’m already being treated. Can anyone please explain why mainstream medicine will always insist to keep B12 “in range” and tell us that too much B12 is toxic to our bodies where any excess B12 will be flushed out in our urine?? I assumed that a haematologist who specialises in all blood related issues would be more compassionate and understanding of Pernicious Anaemia and the importance of this essential but equally important vitamin to the body. If anything, B12 assists the bone marrow make healthy red blood cells and cannot be toxic to the body?? I will be seeing this haematologist in five weeks for a review of my latest results and hopefully, that will be it. Also, does anyone have more information regarding high reticulocytes and B12, if there’s any connection? My own research brings up haemolytic anaemia, another autoimmune disease where the immune system attacks red blood cells.
Thank you all in advance 🙏☺️
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GoneWithTheWind1972
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Your haematologist sounds as ignorant as mine, when it comes to a B12 deficiency they seem to know very little ! Infact mine told me she knew nothing in regard to treatment of such a condition and was only a ' poor old anticoagulist'. Where the hell they get this toxic rubbish from is beyond me when it's water soluable and what isn't used is excreated !
It states quite clearly in the guidelines not to retest once treatment has started........ nice.org.uk/guidance/ng239/...
I would have thought it common sense levels would be high once on treatment.
Thanks Jillymo for your reply. I would also think that B12 supplementation will help the bone marrow produce healthier red blood cells so a high reticulocyte count (immature red blood cells) quickly mature into healthy red blood cells. And why would a specialist in blood issues not learn more about the importance of B12, not tell me to supplement less, it’s beyond my comprehension.
To my knowledge, there is no information in the medical literature, standard medical textbooks, nutrition textbooks or haematology textbooks, that adequately supports a claim that "too much B12 is toxic".
It is a belief that many clinicians and specialists have (I even heard it from a registered dietitian), but there is nothing to support it in "mainstream medicine". Ask for evidence and you will see that none can be provided. It is not an evidence-based claim.
FlipperTD can probably speak better to the specifics of your reticulocyte question.
I continue to encounter medical professionals who seem to always flag my B12 first then the reason for my consultation. Why do they always want to test my B12 again and again, I protest against this but seem to be constantly dismissed in regards to this . I was even tempted whilst in the pathologist’s waiting room to simply cross this off the request form!! Which I regret I didn’t do now.
I think its just a bit mindless on their part to be honest. Automated systems will flag a high B12 result in a blood test just like it will flag any value that is out range. The average clinician who knows nothing about B12 will instinctively jump to that out of range result as something to be investigated or followed up on, purely because it is out of range. They often have no contextual understanding of the significance of that B12 result.
But testing B12 after someone tells you they inject B12 every day or every other day is like walking to the toilet, taking out a couple of notes, dropping them in the bowl and flushing it. It's an effective way to get rid of money I suppose but uh.....
The only way I could see retesting B12 after treatment as being of some value would be if you suspect something most unusual like a transcobalamin deficiency, such that (and I'm not sure if this is even possible), despite injecting B12 so regularly, serum B12 somehow did not reach 4 digits because of some severe inborn errors of metabolism with circulating transcobalamin II.
It may be an obscure technical possibility, but they are not retesting because they suspect such a thing - it's just ignorance and willingness to waste money on useless testing while simultaneously refusing necessary B12 to patients that need it. I wish I could say I understood this but I dont.
I totally agree with you, I only wish that I could get all B12 results removed from my file permanently so, no future doctor may flag it and tell me that it’s too high!
A high B12 result in the absence of supplementation/high dose treatment would be noteworthy and could flag the need to investigate the possibility of various serious conditions. So automated flagging of a high B12 does make some sort of sense. The problem is, contextually, if high dose B12 is being regularly injected, then the serum B12 is invariably high, regardless, and has no clinical significance.
Very disappointing for you. An uninformed consultant who echoes the average GP is both depressing and infuriating. My haematologist was helpful so, yet again, it is pot luck!
I was very persistent and didn’t back off from my support for my current treatment of B12, even with his insistence that too much B12 is toxic. I won’t be bullied by any doctor anymore. Hopefully his approach will be kinder at my next consultation.
I have Haemolytic Anaemia. In my case before diagnosis and treatment I had an Haemoglobin of 72, high Bilirubin and very high ferritin along with tachycardia on exertion and pulsating tinnitus. I had felt not right and unwell for a few weeks. I turned a light shade of yellow due to the high bilirubin. I hope they find your issue and treat you accordingly.
Sorry to hear that you have haemolytic anaemia. Are you feeling better now and is the treatment for it ongoing? Are you feeling better now? My well wishes to you 🙏🤗
Thank you. I was lucky as a high dose of steroids brought my Haemoglobin back up very quickly, it dropped a bit after slowly coming off them but went up again. I have Auto Immune Haemolytic Anaemia and still have the auto antibodies on my blood cells. I feel Ok at present as In remission, I just hope it lasts.
First, let's address the high retic count and low haemoglobin. If your Hb falls, your kidneys respond by release of Erythropoietin [Epo]. The Epo binds to your red cell precursors and encourages them to produce more red cells. The lower your Hb, the greater the response. When your Hb rises into where it ought to be, Epo secretion backs off, and your retic count comes down again. This is a normal physiological process. It's called homoeostasis.
Haemolytic anaemias are those where the turnover of red cells is increased, and the normal survival of about 115 days is reduced. There is sufficient 'slack in the system' that your bone marrow can respond to increase red cell production providing you're not running out of B12, folate or iron. So, it's possible to maintain a healthy Hb even if you have a haemolytic anaemia.
'Haemolytic anaemia' as a term covers a wide range of conditions.
The auto-immune sort occurs when you produce antibodies to your own red cells.
In Thalassaemia Major, the red cells are faulty due to problems in production of haemoglobin, and they are destroyed early.
In Hereditary Spherocytosis, the red cell membrane is faulty, and turnover is increased. There are many other types of haemolytic anaemia; some of these are quite common.
G6PD enzymopathies are inherited conditions, and render the red cells more prone to haemolysis in certain circumstances.
There are numerous other conditions besides these I've mentioned above.
The anaemia seen in PA can be described as a haemolytic process because the red cell precursors don't work very well, and the mild jaundice seen is due to 'ineffective erythropoiesis'. This is because the red cell precursors are doing their best producing cells, but due to DNA synthesis problems, they're not able to finish the job. The pigment found in jaundice is a breakdown product of Hb from the destruction of faulty red cell precursors.
If your Hb is reduced but maintaining its level with a reticulocyte response, then that's a normal physiological response, but doesn't explain why your Hb is reduced, and that's why you're seeing specialists.
After finishing my loading dose which had a positive impact on my symptoms I was immediately put on 12 week maintenance dose. My symptoms returned after 2 weeks 😞. I had phone consultation with young relatively newly qualified doctor. She got advice from a consultant haematologist who advised, “the patient is experiencing a well documented feeling of well being.” Basically I was on a high or experiencing a placebo effect. I had a similar response from a consultant in the Frailty Clinic I was referred to. This, with the help of this forum, led me to self inject and for the last six months I’ve been ‘enjoying’ my placebo 🙃. I am now in consultation with a doctor who is listening, but we’re not quite at the point where he is willing to give the frequency of injections I’m on, EOD. He has tasked me with searching out a ‘specialist’ in B12D so he can write a letter to get assurance before discussing my plight with partners, I volunteered myself for this task as I knew it would be pot luck getting someone sympathetic if he did it. As highlighted in this post/responses I'm realising there is no such beast but rather the knowledge has been taken on board by a relatively enlightened few across many disciplines. So please indulge me and if anyone is willing please pm(chat) me with names of consultants within the NHS who have our best interests at heart. It is quite reasonable to share recommendations with family, friends colleagues etc after finding a doctor, surgeon etc whom we have confidence.
The haematology clinic I was referred to were supposedly ‘B12 specialists’ who insisted that my high B12 could be more harmful than beneficial and that I must reduce my treatment. So, I’ve come to a conclusion, that there’s no change at all in the medical system in regards to B12. They all want us to be sick so big pharma can make money off our suffering.
Stuff them all, I’ll continue my B12 no matter what they say!! B12 has saved my life.
Fortunately we have autonomy over our own bodies so we can go on SI as long as supplies are available. My desire to get my jabs on the NHS is not just because I’ve invested in it for 55yrs but out of concern that at my age I’m more likely to be hospitalised for some reason and I would not get the jabs I need so would be detrimental or even deadly to what ever I might be admitted for. I was admitted 3years ago with pneumonia before crashing with B12D and was so very ill and weak with it, I’d hate to think how I’d got on needing the injections too. It almost as if it is a mass hysterical reaction and facts have no place in their reasoning. 🙄
Well, you go to the other side of the planet - and find that haematologists are exactly the same. The haematologist that I saw told me that B12 was 1) toxic, 2) carcinogenic, 3) highly addictive.
I told her that I would really like a copy of the evidence for this, since the Pernicious Anaemia Society are completely unaware of these findings and need to be warned urgently (!) She changed the subject. I changed tack, and produced evidence of my own, an article written about a case study for Practical Neurology by Talbot and Turner suggesting frequent B12 for functional B12 deficiency. She pointed to the publication date: 2009. This haematology appointment was in 2017.
I asked twice more for any evidence and both times, she changed the subject.
Then she told my GP to halve the (inadequate) frequency of the injections I was currently getting, to "certainly no more than 1 injection every 2 months, as per medical guidelines" - a strange request, if you consider her earlier dire warnings regarding B12.
That helped me enormously: in order to enable me to get back to work while I still had a job, I started self injecting. Firstly every other day for a couple of years, then twice a week (which is the frequency given by my surgery for 6 months after diagnosis).
Much later, I was referred to Adult Inherited Metabolic Diseases, who told me that if they find a genetic cause in a patient's DNA for raised MMA, they advise GPs that the referred patient will need lifelong B12 injections twice a week. Dishearteningly, they find this information is ignored, and the deteriorated patient returns to them for help.
They did not find a cause for my raised MMA, for which they were apologetic - by the time I got to them, my MMA had finally, on the 6th test, dropped into range. After three years of being raised. What else could have caused this but the frequent B12 injections ?
6th test! Were the tests done by doctor or privately? I also pm’d you with a question into ‘chat’ several days ago and was wondering if you have read it. My search has come to a dead end.
Sorry for not replying to you B12again - I have been very busy lately and not managing to keep up with everything I'd like to. I have been unable to answer PMs.
The 6 tests - firstly, and crucially, my GP realised early on that the B12 injections were not doing anything to stop me deteriorating, so sought advice from consultants. She requested this first test because she suspected that I had functional B12 deficiency. Difficult but not impossible for primary care to request this - success on third attempt. Not all hospitals run this test.
When my MMA test came back raised, she had already eliminated renal problems as a cause. Her diagnosis of functional B12 deficiency was confirmed by the testing laboratory. She restarted my B12 frequency at 2 injections a week.
This continued for 6 months, and was working - then suddenly not working so well. It was at this point that she thought that primary care had no more answers and referred me to haematology. It was there that my MMA was tested another 4 times.
I do not think that this would have happened if haematology were not trying to disprove my GP's diagnosis. My reasons for this concern are due to the dire warnings given at my first appointment - that B12 is toxic, carcinogenic and highly addictive. My dizziness, brain fog, yawning and confusion attributed to my having been a smoker. Insufficient oxygen to the brain. Even my GP raised an eyebrow at that one.
I do not think they could find sufficient evidence to feel able to dismiss me. All four of my MMA tests came back raised. My SIBO test was inconclusive (so my GP trialled me on antibiotics, which gave me a negative reaction and nothing else). They sent me to a neurologist - brain MRI came back as fine which was a relief but surprised me, nerve tests fine also. Three gastroenterologists decided IBS was my problem, although this again could only explain away some of my symptoms. They found "patchy gastric metaplasia" and " flattened mucosal pattern at D1 and D2 "(duodenum) but ruled out Coeliac disease.
Adult Inherited Metabolic Diseases consultants studied my DNA for any genetic cause for raised MMA. They did not find any, and by then, the 6th test showed my MMA had dropped into range. This was three years and many many B12 injections after my first MMA test requested by my GP. This was the end of the line in my search .
My GP always tried really hard to find help for me. Nothing else was ever found to be a problem. There are many autoimmune conditions in my family's medical history. I had ventricular ectopics which went away after a few months without the need for statins at this time. My folate and ferritin levels are difficult to maintain at healthy levels, although never below range. I have osteopenia of the spine, reduced now from osteoporosis for which I get vitamin D and Raloxifene on prescription. I have coronary artery calcification (CAC) and now have statins on prescription. My angular cheilitis is controlled by the use of nipple cream twice daily, my constant burning tongue has been put down to "nerve damage" and my saliva duct strictures cause swelling of the saliva glands if I get too hungry. I now self inject with B12 twice a week. Mostly that works for me, but not always.
My supportive and experienced GP was crucial to all my referrals, my treatment, and my wellbeing. Some of the consultants I have seen have been appalling, some extraordinarily knowledgeable and thorough. My GP has now moved on - to secondary care.
I am unlikely to get the same level of commitment elsewhere, and do not bother much with the local GP surgery now. I am awaiting a biopsy due to a three-year gum abscess and have been since August last year. And that's it. Otherwise doing okay, I think.
All the tests I had and all the appointments were arranged by my GP or via consultants and were NHS. The only private test I have had was a full-panel thyroid test early on, because two of my sisters have Grave's disease and this is not available on the NHS. This was a £60 postal fingerprick test with online results given - no autoimmune thyroid condition thankfully.
I think a highly-skilled professional GP determined to discover how best to help you is most useful : if the reports to consultants are accurate, thorough and detailed, it can save you having to have a battle involving flipping frantically through medical notes and highlighted research papers and inevitably ending in tears. Find one if you possibly can.
Most of the consultants I saw were based in major London hospitals. The closest to a B12 expert I saw was an ENT senior consultant. He did not need to see any test results to recognise B12 deficiency - and he encouraged me to continue with frequent self-injecting of B12. He told me to be persistent, that it would take a very long time. A life-saver just when I most needed guidance.
Thank you Cheryl for taking the time to reply. This is very helpful. Your journey seems to be a road well trodden by many. You had a GP you seem to have had confidence in and, as you point out, very important for helping fill in the potholes along that road. I’m on a similar road, not far along it, my GP is listening, even admitting he knows little about B12D, wants assurance he’ll be doing the right thing, hence writing a letter to a ‘specialist in this area. Of course we know there aren’t any disciplines like say, cardiology, but rather, knowledge is scattered amongst multidisciplines and it’s s pot luck if one hits the jackpot or should that be jabpot. Dead ends are frustrating. That’s why I’ve been researching for an ‘enlightened one’ whom I could recommend to my GP to write to (I volunteered for this task knowing it’s a jungle of differing opinions out there - silly me). I am now realising how very difficult this task is and frustratingly so and may have to take a different tack with him. I did gift Dr Chandy’s book, ‘B12 Deficiency In Clinical Practice’ to him via the receptionist a couple of weeks ago. Not seen him again yet, I hope he received it in good grace. I hope this is not too forward but if you could remember the name of the sympathetic consultant who advised you positively and feel able to share, I’d appreciate it. Or for any readers, if you know of any ‘enlightened ones’ and would share, please let me know on ‘Chat’ if necessary. Thank you so much, Cheryl for a very informative response.
Hematologists are the worst. I have refused to see them when my doctor bugs me to. Seems they are not all that interested in seeing me either as they have refused to see me as well. Be patient with them and make sure you have nothing else going on with your blood, and if you don't have another blood issue cut them loose if you can. They can't treat PA, don't understand it, and can only diagnose it if all your bodily conditions are completely perfect for their tests; any variables in regards to PA will most likely render their tests worthless as well as them. Once you have a PA diagnoses no matter where it comes from seeing a hematologist at that point I think is pointless, unless of course there is something else blood related going on that needs to be diagnosed.
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