My doctor is trying to make out I'm crazy. Please can people clarify if my understanding is correct or am I completely wrong?So August 2023 I pay for an active b12 test, cones back borderline low at 48. I supplemented with sublingual cyanocobalamin for 4 months. Then waited 3 months before having another active b12 test. My serum b12 had shot up but my active was even lower at 46. Concerned I supplemented liquid methylcobalamin for 3 months. Waited threw months and tested again. Serum had shot up again but active still only at 48.
Doesn't this mean I have absorbtion issue if the serum goes up but thr active doesn't?
One doctor told me my active isn't going up purely because my body doesn't need it amd will take up only what it needs.
Another doctor said they don't know what active b12 is, I should stop looking into it and deal with my mental health.
Who is right here?
Are they right?
Have I got this all wrong?
Written by
Popcorn12345
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Ok first things first, this is one of the weirdest diseases/conditions there are and you really need to learn about it. Mainly because there’s a lot of Myths and Legends surrounding it.
What were/are your symptoms to suggest that you had B12 deficiency in the first place ? So, it gave you reason to purchase an active B12 test in August 2023.
Did the sublingual B12 for 4 months relieve some or all of those symptoms or not ?
Let us tackle one thing at a time because the way the NHS is at the moment, the powers that be still effectively believe that the world is flat. This is regarding PA/B12D.
So far you have 48, 46, 48, with no units and no reference ranges but even if you did, it does not describe, Restless Leg Syndrome, dizziness, the sighs, poor balance etc. When you understand a bit more then you know that once treatment has commenced, it is pointless testing B12 and that is from the British Society of Haematology. So, effectively you have wasted £39.00 x 2 = £78.00 on Active B12 tests.
If you had symptom relief from tablets then that queries whether you have an absorption issue. If no relief then you most probably need injections. You will find the answers to your questions by listening to your body. Not doctors, not us, not blood tests, trust it, tune into it. It whispers and then it screams.
Oh and I freely admit that I am crazy, bonkers, creepy and a weirdo.
I got it tested because someone said that a lot of unexplained health problems could be from hidden b12. I knew serum wasn't reliable so went with active b12.
Active B12 is not necessarily any better at determining a deficiency than serum B12 (there is some debate about that). The best approach, as Narwhal has said, is to see how your symptoms have been responding (or not responding) to treatment. Since you have not definitely ruled in B12 deficiency yet, I would keep an open mind that other things might be going on. B12 deficiency presents somewhat differently for everyone - even our treatment experiences vary wildly, I wish it was simpler but thats how it is.
I thought that Serum b12 readings contained inactive B12 that cannot be used by the body . I have read that serum B12 readings can contain up to 80 % of inactive b12 . Is this not correct then ?
I too have been privy to the exact information as you, wedgewood and know that the B12 molecule has a spectrum. Rather like light or a rainbow. In the latter, the red colour has a dominant wavelength of approximately 625–740 nanometres. Hydroxycobalamin and methylcobalamin is red. I freely admit that it has been a long time since I have played with mass spectrometry equipment.
Others have claimed serum B12 readings can contain between 40 and 70% of inactive B12.
If anyone watches me cook, it’s a dash of this, a pinch of that, whack a bit of that in. Taste, nah, a handful of that. Taste. Jobs a good ‘un. Ask me for a recipe. Fat chance. Poor Popcorn12345, has been told to focus on their Mental Health, so we will help them with your wonderful method to stir things up.
Recently, I was informed that We do not use cream in our Victoria Sponges. I refrained from laughing until I got home. Clearly there was Professional Standards at work there.
Sorry for the delayed reply wedgewood . You are correct that serum B12 is mostly inactive B12. But I'm not sure that the results of an active B12 test are any more conclusive for a deficiency than a serum B12 would be. If they were demonstrably more accurate in diagnosing deficiency, most likely they would completely displace serum B12 testing in normal practice.
MMA and Homocysteine are also useful but cannot completely rule out deficiency. Symptoms have to guide for the most part as far as I've been able to determine.
Better that I simply relay Bruce Wolffenbuttel from his recent paper though which has better nuance than I can muster:
"the methods used to measure B12 in the blood, or certain biomarkers associated with B12 metabolism, such as holo-transcobalamin, methylmalonic acid, and total homocysteine are unreliable."
...
"Some studies suggest that measuring holoTC, the biologically active fraction of vitamin B12 in blood, has better diagnostic accuracy than total serum B12. However, holoTC also shows a wide variation with indeterminate levels, and the reference values strongly depend on which assay is used."
You were correct to get your B12 tested with those symptoms. You are correct that that the serum test is not particularly reliable. According to one source, measuring between 40 and 70 % of the inactive B12. You would be correct in knowing that the cut-off levels for this disease/condition varies widely across the U.K. So, if I flew to Scotland (pre-treatment) and had a serum test, I would be deemed sick. They may have a cut-off value of 210 mg/L. So, injections are commenced because my result is 207 mg/L.
Yet, if I went to London (pre-treatment) and had a serum test, they may have a cut-off value of 190 mg/L. So, I am regarded as healthy. If I swam over to Dublin and had a serum test, they may have a cut-off value of 160 mg/L. So, again, I am regarded as healthy. But I live in Wales and in this particular area the cut-off value is 130 mg/L. Previously, it was 190 mg/L but THEY decided to change it.
Now, that you know tablets do not work for you. Please either consider visiting an aesthetic clinic. Please research them. You will find qualified doctors and qualified nurses who have walked away from the NHS. Then consider self-treating which we will help you with. Please know the first injection has to be undertaken in a clinical setting just in case, you have a reaction.
Sadly, Popcorn12345, you have been pigeonholed by your GPs. It maybe worth reading some of Ms T Witty’s work :-
Please know that there is a lot of bureaucracy within the NHS. You may wish to visit the Doctor in East Anglia. It really depends on what you can afford. Please feel free to private message me. It may take 48 hours for a reply but you will get a tonne (not a megagram) of information. It really is tremendous to have HugoMinney on the site.
"Treat the patient, not the numbers" is a good starting point.
It's a wonder we were ever able to institute treatment of 'PA' when we'd no idea what the 'extrinsic factor' was, but we have to give thanks to the likes of Minot, Murphy, Whipple and Castle that we got to where we are today before we had Microbiological Assays, Radioisotopic Assays and such.
However, I subscribe to the Narwhal10 school and admit to being crazy, bonkers, creepy, a weirdo and being barking mad. Just don't tell anyone.
It is very easy for a Dr to say its all in your head because they are ignorant when it comes to nutrition. I was sent to see a neurologist who was nothing other than a quack who tried to diagnose me with Functional Overlay - dont bother asking about that one its very complicated but I no more had it than I had a boil on my bum !
My Dr had originally prescribed the one size fits all of 3 monthly injections which was nowhere near enough to keep the neuropathy at bay. I suffered miserably until taking the bull by the horn's and self injecting.
I get a nasty pain in my bum bone and can no longer sit for very long! If B12 is helping your symptoms carry on with what your doing.
The b12 supplements didn't help with symptoms i don't think. I'm not sure.But I would have thought active b12 would go up if serum did. Isn't that how it works?
You are probably crazy. Unfortunately one of the neuropathy symptoms of B12d is to go a bit crazy - the fogs (when you know people are talking but you really can't be bothered and don't know why they are talking to you and you wish they would go away), memory challenges, psychoses (imaginary voices and flashes of light), dementia, the works. I imagine yours are nothing like this but all of the above can manifest in people with B12 deficiency and if you catch them early enough they can be reversed and you can get your life back.
You've described a number of B12d symptoms, which are also common with other conditions. It's normal to have a number of things going on at once, so "curing" one still leaves you with the other ones to tackle. It's a pain, but we were never designed to live this long. Babies at 15, looking after the grandchildren 30-40, by which time you aren't fast enough to escape the sabre-tooth tiger so why develop genes that keep you well past that point (and there's a finite number of genes in our body, and there's no point in improving the ones for old age if it means we don't live that long, so yes, the genes do tend to favour when we're young).
Narwhale is spot-on. Take the tablets and see what you respond to. AVOID CYANOCOBALAMIN - it comes straight back out again because B12 goes around looking for toxins like cyanide, wraps itself around it, and then gets excreted by kidneys into urine so it literally (not literally but very nearly) goes in one end and comes out the other, without touching the sides on the way. Methylcobalamin, adenosylcobalamin (but only loose in capsules, the hard tablets don't seem to work), hydroxycobalamin - any of these.
If tablets don't work (and they do in 2/3 of people) then consider injections. Why do people say that tablets don't work and only injections work? Because (we in B12d.org think) we were severely underdiagnosing and only diagnosing those people who needed injections, whereas now we're diagnosing more, we're finding the people who can do just fine on tablets.
What about your active B12 not changing? I don't think we know enough about active B12 to know what the normal range is. It isn't 20% of total B12, it's an amount depending on the available TCII. It doesn't depend on the body's need, it depends on whether there's a binding protein (TCII) to help it get into cells. The rest of the B12 isn't unavailable, it's unavailable UNTIL it's converted to active (which we think happens through entero-hepatic circulation ie the B12 goes down the bile duct, combines with food in small intestine (you know, the very long one), sticks to intrinsic factor, gets pushed back across the gut wall, and binds to the TCII to make active B12.
Did you want to know all of this? Probably not. Trust your body and keep a diary of how you respond to different tablets. There's a "quick assessment" in Appendix A of Dr Chandy and my book at b12d.org/book - if you make a few copies you can put the date for each day you record symptoms and put the symptoms there, and you'll have a record.
" AVOID CYANOCOBALAMIN - it comes straight back out again because B12 goes around looking for toxins like cyanide, wraps itself around it, and then gets excreted by kidneys into urine so it literally (not literally but very nearly) goes in one end and comes out the other, without touching the sides on the way. "
is not correct. Cyanocobalamin works and is absorbed like the other forms of B12. There are differences in how the molecule is broken down but all forms of B12 are broken down to the base cobalamin molecule. Unfortunately I have heard the same misinformation from Dr.K at the iron clinic. Cyanocobalamin might not be a lot of peoples first choice but the idea that its not being absorbed at all is complete nonsense, in fact, some trials find that Cyanocobalamin is BETTER absorbed. clivealive has been doing perfectly well on Cyanocobalamin for decades and Cyanocobalamin is the default injection choice in the US.
There is enough unscientific scaremongering about cyanocobalamin going out on TikTok and other disreputable places without it spreading here too.
It was Dr Chandy and myself that presented the evidence to BNF (British National Formulary) that cyanocobalamin is less effective, and coincidentally (BNF never reveal their sources or reasons) it was withdrawn from the next edition of BNF, saying that its half life in the body is too short to be of use.
Some people do fine on cyanocobalamin. Some people get headaches (which could well be related to the release of cyanide and they just happen to be sensitive). A lot of people simply can't break the CN-cobalamin bond because it's too strong, and can't use cyanocobalamin.
The only way cyanocobalamin can be converted into methylcobalamin or adenosylcobalamin is by releasing cyanide. One of the ways the body gets cyanide out of the body is via wrapping it in cobalamin and then excreting it. So you free up some cobalamin from cyanocobalamin and then lose it again to removing the cyanide. Since we have the choice, why do that?
Why did cyanocobalamin come into such widespread use? Because it's very cheap to make, so there's lots of profit (hence why they use it in USA). It's highly stable in transport and storage because the CN-cobalamin bond is very strong - which is exactly why some people can't use it, they can't break the strong bond.
I know people say that the amount of cyanide released couldn't possibly be enough to cause headaches - sorry, but we recorded it with no prior knowledge that cyanide might be released (we hadn't thought about it at that stage), and therefore the equivalent of a double-blind experiment (we couldn't possibly influence the patients reporting the symptoms) until a pattern emerged. People are each unique, and a sufficient number are sensitive to cyanide that it showed up on our observations.
Your response moves the goalposts to a separate question - of whether cyanocobalamin or hydroxocobalamin is a more effective form for injections, has a longer half-life, less side effects and should be the default choice for injections to correct B12 deficiency. This is an interesting but separate question. I think there are good arguments for hydroxocobalamin as a default injection choice but again this isnt the issue here.
Your statement regarding cyanocobalamin was that it:
"comes straight back out again because B12 goes around looking for toxins like cyanide, wraps itself around it, and then gets excreted by kidneys into urine so it literally (not literally but very nearly) goes in one end and comes out the other, without touching the sides on the way. "
Although hydroxocobalamin can be used to detoxify cyanide, most cyanide is detoxified "via the enzyme rhodanese which converts cyanide to thiocyanate by adding a sulfur molecule. Thiocyanate is then excreted in the urine. Although most rhodanese is found in the kidney (Aminlari, 2007), the World Health Organization reports that 80% of absorbed cyanide is metabolized to thiocyanate by rhodanese in the liver (WHO, 2004)."
Impaired kidney function would also be a good reason to consider hydroxocobalamin over cyanocobalamin.
Some background on how average cyanide intakes compare to that provided by an injection or supplement:
"The European Food Safety Authority (EFSA) defines an acute reference dose (ARfD) as an estimate of a substance in food or drinking water that can be ingested over a short period of time, usually during one meal or one day, without appreciable health risk to the consumer on the basis of all known facts at the time of evaluation (ECHC, 2001). The ARfD for cyanide has been set at 20 µg/kg of body weight (EFSA, 2019), which is 1,270 µg for a 140 lb (63.5 kg) person."
"For a 140 lb (63.5 kg) person, the average daily cyanide intake from food and air would be 113 to 164 µg per day (1.42 to 2.53 µg/kg of body weight plus 3.8 µg/day for air exposure). A 1,000 µg dose of cyanocobalamin provides an additional 19.2 µg of cyanide."
"A 1,000 µg dose of cyanocobalamin increases daily cyanide intake from 12% to 20%. That seems potentially impactful, but it only increased the percentage intake of the ARfD from 7.4% to 8.9% (LB) or from 13% to 15% (UB) which is negligible."
Outside of kidney disease and rare inborn errors of metabolism, there is no good reason to avoid cyanocobalamin injections if that is what it is available/prescribed or if the other forms do not work as well for you. For example, as I mentioned, one forum member has relied on cyanocobalamin for decades because he has a reaction to hydroxocobalamin.
Other US forums members regularly use cyanocobalamin and there is no good reason to scare them away from doing so. The point is that cyanocobalamin injections are NOT useless and the cobalamin in a cyanocobalamin injection is NOT excreted unused as you have claimed.
An old post although a needed contribution as i reside in the USA and take cyano injections 2 times per week and thus far all body parts remain in-tact. Nothing has fallen off.
The problem is I'm also recovering from another health condition. One of which isn't believed. So it's hard for me to untangle the mess when I'm already not believed about the other condition
Gosh, he is a marvel. It is about your Finances. Plus, some people are so unwell they struggle to commute.
Back way back when, I knew I needed a blood transfusion* but on 2 occasions, I could not even get to my GP surgery to have my B12 injections.
* Please know that I am a qualified midwife who was taught nothing about PA/B12D. I cried for a whole day when I started learning all about it. I know all about gaslighting and the politics of the NHS. When hospital based, often I would get told off for not doing this or that by managers.
Women are often iron deficient and running my own clinics, I would stand up, walk towards them smiling, greeting them, introducing myself. Once chatting, I’d say I have your blood results back. They are just arbitrary figures to me, tell me how you feel. I noted you were a bit pale and drawn when you walked in. Then I would actively listen and examine. I would offer iron on prescription but explain it was cheap and nasty, causing constipation. If they wished me to go ahead then that was fine. If others could afford, I would recommend Spatone, liquid iron which is far gentler on the gut. Socioeconomic factors affect health.
So, by all means see Dr K at whatever they charge. He is the Go To Person Or pop along to a respectable aesthetic clinic with ex-NHS staff. Any guesses as to why they have left ?
One member of this community had dreadful problems with their NHS GP regarding PA/B12D so booked a private GP appointment. Lo and behold, they walked into that private appointment and the private doctor was their NHS GP. The community member was not charged for their appointment. So, I always ask this, why did my mates and I have to take nappies to work ? Why were we were run ragged and stupid. Even worse, why are 2 people not 1, in suits with clipboards, coming to check my ward and trying to tell me how to do my job ? Yes, Operating Theatre lights on, just bounced them down the corridor. Just waiting for a phone call to tell me if they are both ok. Dad was rather frightened too but I did reassure him as well. Sorry, people in designer clothes, what were you saying that is so vitally important ? Yes, we are short staffed again. I filled in this Incident Form in advance. I need more staff, I cannot cut myself into quarters.
Hi Popcorn12345 , I'm not sure you're addressing me but will reply just in case. I only know of this doctor via reports on the site and a single interview that was posted here. I have not had any personal interaction. It seems to me that in most respects he is leaps and bounds ahead of the average GP in terms of understanding of how best to treat B12 deficiency. However I did hear him state this same misunderstanding about cyanocobalamin that Hugo posted above. B12 is a complex subject so I don't think its the end of world if someone gets one thing not quite correct. Cyanocobalamin is not used for treatment in the UK anyway so it would not be an issue here. My concern would only be if US members were to come across the statement, they might be mislead by it, causing them to needlessly avoid cyanocobalamin injections or supplements, falsely believing them to be "useless".
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Am I crazy or do I need closer timed shots?
So frustrated I could cry
B12 Injections Stopped Working?
What's wrong with me?
