I saw my (private) haematologist last night and confessed my B12 EOD habit. It took him several minutes to come down off the ceiling and have a proper discussion with me as I made my argument: that, if I'd followed the NICE protocol I wouldn't be where I am today (mostly functioning well), I wouldn't have a life, that I'd been B12 and iron deficient for years and it's not reasonable to believe that the NICE protocol in any way addresses long term deficiency and that the body can heal and recover on 6 loaders then every three months etc etc. He began to take notice, was concerned about the effect on my organs. I did reassure him that I kept a watching brief on my kidneys. He then said I should have a series of Active B12 tests, three over two months whilst cutting back on my EOD, which I may or may not do depending on how I feel. I can't really see how limiting my B12 intake will affect my active B12 count. Could anyone explain? But I think doing that test is useful to me and it seems not to be available through primary care. It was a good and amicable discussion. He affirmed my dosage of heme iron (40mg) and said I should keep on taking it. My haemaglobin was on the up. Will update in due course. I will send him the Wolfbuttall (?) article. I see him for a follow-up in November after another surgery blood test beforehand. He won't report my confession back to primary care. It's our secret.
Follow-up with haematologist - Pernicious Anaemi...
Follow-up with haematologist
Hi,
I've copied this from another thread. It mentions articles your haematologist might find interesting.
Help for health/medical professionals
1) PAS website has a page for health professionals.
They can join PAS as affiliate members, no charge.
pernicious-anaemia-society....
PAS has organised conferences, maybe your haematologist would be interested in the presentations from past conferences.
pernicious-anaemia-society....
2) Has your haematologist heard about Club B12?
It's a group of doctors and researchers who are looking into B12.
They have regular zoom meetings and have hosted a conference.
It was founded by UK doctors/researchers.
3) Good articles to pass to doctors
From Mayo Clinic, US
pubmed.ncbi.nlm.nih.gov/311...
The Many Faces of Cobalamin (Vitamin B12) Deficiency
Bruce H R Wolffenbuttel 1, Hanneke J C M Wouters 1 2, M Rebecca Heiner-Fokkema 3, Melanie M van der Klauw 1
Affiliations expand
PMID: 31193945 PMCID: PMC6543499 DOI: 10.1016/j.mayocpiqo.2019.03.002
Free PMC article
Recent BMJ article about B12 deficiency by B. Wolffenbuttel
In my personal opinion, he's one of the few doctors who understand B12 deficiency.
bmj.com/content/383/bmj-202...
Vitamin B12
BMJ 2023; 383 doi: doi.org/10.1136/bmj-2022-07... (Published 20 November 2023)
Cite this as: BMJ 2023;383:e071725
The author of above also wrote an article for PAS in Jan 2024.
Only One Chance
pernicious-anaemia-society....
B12d.org
I've heard that B12d.org have online talks for their members, sometimes from doctors working in field of B12 deficiency.
Maybe HugoMinney can say more about this.
I've noticed that B12d.org is developing a new website.
I'm not medically trained.
Thanks Sleepybunny. The Wolffenbutell article is the one I think he may read. They are such busy people and I'm planning to take a hard copy by hand to the active B12 blood test. Now we have a bit of a rapport he may read it.
Hi Orchard33,
Good you told them. Erm slight problem with their advice of active B12 testing because what does the British Society of Haematology say ? No further testing after treatment has commenced.
No B12 testing. No Intrinsic Factor testing. So, a complete waste of Money. As you paid privately to see him which set you back approximately £100.00. Then Follow Up will be £80.00.
If he was so concerned about your organs then he would know the pharmacokinetics and pharmacodynamics* of Hydroxycobalamin, Methylcobalamin and Cyanocobalamin but guess what ? He does not. He spouts this nonsense of damage and toxicity.
Interesting fact 9,731, in 17th Century Doctors used to dole out Mercury tablets for all sorts of diseases. Everyone was as Mad as Hatters.
Until someone designs a pro forma which is approved and added into the system and a proper flowchart, plus algorithm, Doctors and Patients will always get this wrong. It would include Patient Reported Symptoms Before and Patient Reported Symptoms During. Similar to how they Monitor Asthma.
People are prescribed inhalers. They administer the drugs themselves according to their symptoms. Environmental triggers can exacerbate their symptoms such as the weather, pollen, smoke, exercise. Similar to PA/B12D.
N.B. pharmacokinetics and pharmacodynamics are measurements of how quickly the body metabolises different Drugs. If your private Haematologist was any good, he would be suggesting ordering a Homocysteine test and/or MethylMalonic Acid test to look at the Metabolites in your blood.
So, Orchard33, what is Metadata ? 😉
How accurate is a Measurement ? So, years ago undertaking a Fitness Test, the last hour was a Step Up test. We were wearing Heart Monitors. We were ordered to STOP.
Within 2 minutes, a man in a uniform was making a phone call and another man was standing next to him. I overhead what was said. Within 5 minutes, a Top Dog was shouting in my face. Yes Sir, I replied. The Reserve Army had never seen anyone’s Maximum Heart Rate descend back to baseline of 48 bpm so quickly. I had simply used my mind and breathe. Every second my HR dropped 10 - 15 bpm.
So, how much Money are you willing to spend to prove your body doesn’t convert B12 ? Now, nobody on here discusses that a B2 deficiency has to be treated before or in conjunction with a B12 deficiency.
11 months ago, I posted this. Doctors are trained in Drugs and funded by big Pharmaceutical Companies. That is where the Power lies.
healthunlocked.com/pasoc/po....
Your Active B12 tests will only be accurate for 1 minute. That is ALL. By the time the value it is reported to the GP Surgery, your Haematologist, yourself, that value is wrong.
What is the cortical homunculus please ?
😘
Excellent advice as usual Narwhal10. My only comment is that in my area the private consultation fees are now over twice your figures at about £240 for initial consultation and up to £195 for follow up. Very expensive indeed!
Thanks yorkshiregirl4,
Ridonkulus prices and you don’t even get Air Miles. Saving Orchard33 money means a cheeky lil holibobs for them. Bit of a tip for the PA Society. Bob’s your uncle, Fanny’s your aunt. [ Taps nose and points ]. Say no more, Rodders. This time next year, we’ll be millionaires.
I had a private active b12 test because my serum test was off the scale but I still developed deficiency symptoms and obviously needed injections. My active result was 250 + so availability/conversion doesn’t mean adequate absorption and I won’t be having any more tests.
Thank you for your reply. The consensus here is that an active B12 test is a waste of time and money and says very little about anything. So I won't be having any active B12 tests. As Narwhal indicated, I know I can't absorb so tests tell me nothing more that is useful. The consultant's need not mine.
Horrendous Experience at Haematologist Appointment
What now, totally lost and scared 
Follow up re husbands B12 level 229
