Does anyone have any experience of seeing a private consultant in the UK for B12 and folate deficiency?
I was diagnosed in February 2020 and have had injections every 8 weeks. After complaining that symptoms come back after about five weeks and asking if I can have injections every 4 weeks, the GP has agreed, but changed me from hydroxocobalamin to cyanocobalamin. I had the first cyano injection about a week ago and haven’t noticed any improvement.
I’ve had tests for coeliac, h pylori etc., an ultrasound on my intestines and a gastroscopy. All negative apart from the Gastroscopy showed I had a small area of non erosive gastritis. My IF test was negative.
I’m keen to find out the true cause of my B12 and folate deficiency. I’m assuming that my folate level will drop again since I finished the course of 5mg prescribed tablets. I’m wondering if this is why my fatigue and pins and needles/ brain fog is so bad again.
Is there any benefit in finding a private consultant and if so, can anyone recommend one in the UK? I live in the south of England, but willing to travel.
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Cinders70
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No, I assume it’s because it’s licenced for use every 4 weeks, whilst hydroxocobalamin is only licensed for 8-12 weeks.
It gets them out of the argument for more regular injections.
Although the cyano doesn’t last as long from what I’ve read and also, it sort of smacks of them assuming I’m asking for more frequent injections for the sake of it (as if!) and they are doing it to humour me.
I paid to see a neurologist az symptoms persisted and the NHS ons had discharged me. He was helpful with B12 frequency issues as he himself couldnt conform to NHS regime set. He also put a stop to oral b12 I'd been trying to help soacd injections out. He wad not convinced of the few papers about it
It was by chance this happened as I chose him because of the ongoing vestibular problems. Mainly chronic headaches . Some thoughts migraine some chronic tension and now vestibular ongoing migraines?? He actually helped more with the b12 . He wrote to the Gp.
There does not seem go be specialists In B12. Some have a special interest.
Some are more open as not enpugh facts or research printed . Of indeed done.
I still dong know the cause
I still am struggling.
I'm still waiting to see a neuro opthalomogist
I am better than i was but its taken over 2 years so far .
I was told by neurologist
'No quick fix' ??
I sti would write to Gp and push some more.
I did manage to get 2 weekly prescribed before seeing this neurologist
He supported b12 subcutaneous b12 injections.
Just kept going. Difficult I know.
I had to sort my mums out too.
As they were being stopped.
Also help my daughter with getting them 10 weekly at present.
3 generations and doctors cant see the link that we all need them ??
It’s tough enough having to fight for yourself to get the correct treatment, but also having to do it for your mother and daughter, especially when you are feeling so unwell, must be extraordinarily stressful and difficult.
Yes it was. Especially for 91 year old mum. I really dont understand whats going on at present. My grown up daughter has constant battles with health and treatment. Even with what shoukd bd z straight forward prescription.
No one seems to be communicating with other to deliver services. All so fragmented.
It used to work better I'm not looking through Rose tinted glasses.
I actually went to see a sports endocrinologist called Dr Nicky Keay as before I was ill I was a runner and I thought she would be more interested in me losing my ability to run above all drs. I was giving myself B12 injections and had improved so that I could function a bit more. But after 5 months (now 9) I was still suffering with fatigue and pain and wanted to know true cause. My GP had refused all tests and had just told me I could have a blood test in 12 months. It was expensive to see her, but she did some tests through her clinic and then wrote letter to my GP to get tests for autoimmune conditions. I think she suspected Rheumatoid arthritis. 2 months later I am still waiting for some of those results so it’s been slow. If the GP tests don’t show anything I will go back to her and see. And also I will change GP practises as never found a GP interested in treating me.
Hello Cinders70. I take it that you have been diagnosed with pernicious anaemia and that means that you will have to have B12 injections for life. I have had it since 1970s. I was diagnosed with ulcerative colitis at the same time and PA is apparently something that can go with it. I had injections very frequently at first, every few days and gradually I went to every two weeks, and then every three weeks. I was caring for my husband and felt unwell so my doctor said I could have them every 10 weeks. Then it all changed and apparently everyone is now supposed to be able to manage every three months. But, everyone is different and needs the hydroxocobalamin at different times. We cannot all manage at three months (I was told it was the Government who prescribed it. I think it will depend on how your body manages, but please try not to worry. I know with this Covid, some GPs are not doing the injections. You cannot take tablets of B12 as anything. i.e. food etc will just get thrown out of your body, because the stomach cannot absorb it. (it is called intrinsic factor that is missing) I hope you can get it sorted out, specially as you have not long been diagnosed. If your body needs it, it will tell you. I think that cyanocobalamin is different to hydroxocobalamin. I hope you can get it sorted out as you can feel really unwell if the amount you have and the periods of time are different in all people. Good Luck
I haven’t been diagnosed with Pernicious Anaemia, as the one Intrinsic Factor test I have had came back negative. I am aware this is often the case and that it gives false negatives, but at the moment I’m stuck with a ‘B12 and folate deficiency’ diagnosis with no idea of the cause.
Hello Cinders70 I am sorry that you are struggling with tests and getting answers, I know how worrying it is, specially with this Covid going on. |I do hope you can get some answers and start to feel better. I now self inject as my surgery cancelled for a year, so thanks to some great people here, I get the injections from Germany and needles from Medisave I have found it very easy to do, as there are also instructions on U Tube. You must be feeling worried and frustrated. I do hope you can get something sorted soon. I do not know of any private clinics, but am sure you could find some on Google. Good luck. Briarhill cat.
The finding of a low total serum cobalamin level may be further evaluated by testing for anti-IFAB. If positive, the test has a high positive predictive value (95%) for the presence of pernicious anaemia (Toh et al, 1997), with a concurrent low false positive rate (1–2%) i.e. a high specificity. It identifies those patients with a need for lifelong cobalamin replacement therapy. IFAB is positive in 40–60% of cases (Ungar et al, 1967), i.e., low sensitivity, and the finding of a negative IFAB assay does not therefore rule out pernicious anaemia (hereafter referred to as AbNegPA).
Before I say anything, I have to stress that, although I might say something that sounds very medically scientific, I am a retired different sort of scientist. I am not a doctor. So please read what I say, as it might be helpful, but please check everything.
I find that changing you from hydroxocobalamin to cyanocobalamin to be very strange. As you say, the "standard dose" of hydroxo is every two or three months and the "standard dose" of cyano is every month. Not, I hasten to add, that the "standard dose" is in any way sensible, but the relative frequency of the standard doses of hydroxo and cyano should tell us something. It suggests to me that one needs two or three times as much cyano to get the same effect as hydroxo.
In any case, I thought it was only the Americans that still use cyano to any extent. Possibly because it is cheaper, possibly for "business concerns". I don't know.
I don't want cyano. I think about what my schoolboy chemistry suggests to me. It suggests that cyanocobalamin separates into the cyano and the cobalamin radicals in the blood stream. It then suggests to me, possibly wrongly, that a lot of the cobalamin radical is needed to wash out the cyano radical. Remember that the "cure" for cyanide poisoning is huge, massive doses of hydroxocobalamin.
Remember also that cyanocobalamin was produced only because, at the time when they were trying to produce useful vit B12, joining the cobalamin to a cyano radical was the only way they found they could extract the cobalamin from wherever it was in the chemical mixture they had. Time has marched on. More researchers found that they could extract hydroxocobalamin, which consists of a water radical and a cobalamin radical. Much nicer!
You can read about this in Wikipedia and other sources. A search will produce a lot of useful material. If you really way to "sock it" to your GP, I suggest, however, you should only quote from articles from the National Library of Medicine. Face Book, even this forum, and even Wikipedia will not carry the authority that any self respecting GP would or should accept - although simply telling him/her that I am alive and well after over 30 years of 1 mg of hydroxcobalamin every two weeks should mean something.
(There must be lots like me, who have been getting enough hydroxo to be able to live actively and happily. On the other hand, there must be a lot who have died young because their nervous systems gave up because they were not getting enough B12.)
My experience is that I was diagnosed with PA over 30 years ago. I had inherited it. My father had died of it, aged 51, in 1954. I was diagnosed by the old, accurate Schilling Test. I was put on 1mg hydroxo injection every three months to start with, but by discussion with my GP it quickly went to 1mg every two weeks, and has been there for over 30 years. That is because I fell off a cliff after two weeks, and still do.
The guidance issued by the powers that be about the frequency of injection of hydroxo and cyano is not, I believe, a law that doctors are obliged to follow. They have not in my case, for 30 years. Perhaps they worry lest something dreadful happens and it is shown that they have not been following the guidance.
As for me, now, at the age of 82, after being injected with 1 mg of hydroxo every two weeks, give or take a day or two, for over 30 years, I am surprisingly fit and well for an old man who has never taken proper care of his body. Everything still works, my blood pressure is a delight, my heart bumps along in a sensible regular fashion, and so forth. (And I self inject with hydroxo. Much the easiest way.)
I therefore claim that I am an example of the fact that 1 mg of hydroxo never hurts, but does a lot of good. (I am sure that other people will tell you that you cannot overdose on hydroxo, but I can only tell you about my experience. I have no idea if one can overdose on cyano - and I have no wish to find out.)
Having said all that, I find it difficult to comment on your case. You say that you have tested negative for IF antibodies. That would, to my amateur mind, suggest that your B12 deficiency is not the sort of Pernicious Anaemia that I have. But I don't know. You say you were "diagnosed". Was that by a serum B12 test, which found a low value? Was it by an "active B12 test"? My total B12 serum test shows a value of over 2000 - off the scale. There is actually no point in measuring the total serum value. It says nothing useful
The question is, how much of the total B12 in your blood stream is "active B12", which is to say the form of the vitamin that is actually useful to the cells in your body? Examples of that are adenosylcobalamin and methylcobalamin. An example of a form that is not useful is holohaptocorrin, which will be swept up by the liver and pumped at a regular rate down the bile duct, to be converted by Intrinsic Factor to holotranscobalamin, which is absorbed into the blood stream. Once in the blood the holotranscobalamin will change by methylation, or some such process, to a useful form, or, by some other process, to a useless form. But, in the absence of IF, the stuff pumped down the bile duct, the holohaptocorrin, is not converted to an absorbable form, but simply goes and adds to the sewage. The term for a properly working B12 arrangement is the "enterohepatic circulation".
It is all rather like a car engine, where the oil is collected from the sump and pumped around the engine, descending back to the sump. You just have to top up any slight leaks with more oil - or more suitable food. The absence of suitable food will eventually cause someone who takes up veganism, but does not get a replacement supply of vit B12, to become seriously ill. But it will take months or years . The store in the liver will suffice for ages, provided the vegan has working IF. But for the likes of me, we do not have a circulation. We have no IF, and so no absorption from gut to blood stream. We have a "total loss system" - very expensive on oil if we were motorcars! Happily, hydroxocobalamin costs pennies.
It is not unknown for doctors to say "but you store it in your liver, so you don't have a problem." Yeah! My old car would store the oil in the sump of its engine, but the oil pump doesn't work and the sump gasket is damaged, so I have to keep pouring oil in the top. It slowly descends to the sump, doing good work on the way, and then leaks out the bottom of the engine. In other words, stick the B12 in with a needle, knowing that quite a lot will go to polute the sewage works - and do it as often as may be required by the patient, remembering that all patients are different..
Having IF antibodies is obviously a classical example of pernicious anaemia. I would not, however, have thought that the lack of IF antibodies means that your parietal cells are necessarily producing IF. It is analogous to the fact that I do not drive fast, even though I own a powerful, sporting motor car - that car is a wreck in the garage. The fact that there is no sign of IF antibodies means that there is nothing preventing your parietal cells from producing IF --------- except for lots of other possibilities. These include parietal cells knackered for other reasons - wrecks in the garage.
So, are you producing IF at all? Can you get a test to show the presence or absence of IF? I don't know.
On the other hand, are you a vegan, who is failing to eat any B12 alternative to the usual sources of B12? (B12 is only found in meat, fish, eggs, dairy, etc. You can have a lovely diet of beans and so forth - and become very ill.)
As to Folates, I take 400 microgr of (over the counter) Folic Acid every day (and I take Vit D tablets). 5 mg Folic Acid is about 12 times as much as I take, but I am convinced that the small dose that I take every day is good for me, and enough for me, and I am convinced that it will not do me any harm.
As to finding a private consultant, I was sorted out for free by my NHS GP, at the time, 30 odd years ago. Subsequent GPs have followed the lead of the first one. Perhaps I am lucky. Having said that, once, when I changed GP about 20 years ago, the new GP wrote to a consultant haematologist to ask if 1 mg hydroxo every 2 weeks was OK. The haematologist replied that it would do no good but it would do no harm. The haematologist clearly knew very little about the nervous system.
On the other hand, I did once see a consultant neurologist for a life insurance medical (which I passed - he was right, I have not died). He said that having 1 mg of hydroxo every two weeks was fine, but more would also be fine. The only reason I do not take more is that I do not feel a need for it.
The effect of low B12 is that your nervous system gives up (the myelin sheath of the nerves is damaged). So, if you decide to find a private consultant, I strongly suggest that you find a neurologist, and that you ask him for his experience of B12 deficiency before you see him and pay him. On the other hand, although a haematologist might get the need for copious quantities of B12 wrong, (s)he might be the best person to see if you are having absorption problems.
And that is that. I hope it is a little bit useful.
Thank you so much Nomizo, for taking the time to give such a detailed response, I really do appreciate it.
All of what you relate is very interesting. I’m extremely glad to hear that you are fit and healthy after 30 years of bi-weekly injections.
You are right, I’m not entirely happy with the idea of being given cyanocobalamin instead of hydroxocobalamin.
My deficiency was determined on a total serum test. My result was 85 (pmol/ l I think), so pretty low. I’ve not had an active B12 test.
I just know that the injections helped, after a time, but now they don’t seem to help as much or for as long.
I’m really concerned as I’m struggling at work (I’m also a ‘different’ sort of scientist) and if I don’t get things sorted soon I’m either going to have to resign or get kicked out for taking too much time off. I only work a four day week and struggle with full days as it is.
Weekend are largely spent resting. If I do too much it wipes me out for days.
Hence my questions about finding someone who might help privately. I just want a decent quality of life back and I think this should start with determining the precise cause of my B12 and folate deficiency.
I do have stocks to self inject, and have no qualms about doing this (I’ve done it three times, intramuscular my in my arm so far). I’d just prefer to not have to do it below my Dr’s radar, as I don’t believe it’s helping anyone else’s cause and I can also imagine their reaction!
I’ve considered myself lucky so far to be able to get hydroxocobalamin every 8 weeks with no stoppage for COVID.
I think I probably could have done with more loading doses though. I pushed them to ten and then gave up while I considered ‘the going was good’!
I had a negative test for Intrinsic Factor. I know this doesn’t necessarily mean much due to false negatives.
I may continue to push for a referral to a neurologist or haematologist. I was previously told my surgery refer to gastro only for B12 issues as standard practice.
"It suggests that cyanocobalamin separates into the cyano and the cobalamin radicals in the blood stream."
No, the removal of the upper ligand (rather than radical) happens when the B12 is taken into the cell. And it happens to all forms of B12. So, once they are in the cell all forms are converted to cob(II)alamin. From then on they are all identical.
If once they are in the cell, all forms are converted to cobalamin - why the guidance of a different injection frequency, for hydroxocobalamin and cyanocobalamin?
Because they do not behave the same before they enter the cell.
I don't know why (I'm not sure anybody knows why) but cyanocobalamin is removed from the blood faster than hydroxocobalamin. That's why it needs to be given more frequently.
To be honest, I can’t say I’ve felt the benefit of this jab at all. But I have had a particularly rubbish few weeks anyway (for other reasons), so this may have masked it.
Cinders, I inject with cyanocobalamin. But I have injected with hydroxocobalamin and methylcobalamin as well. Some people find no difference whatsoever. I did.
Methylcobalamin was an experience I do not wish to revisit.
With hydroxocobalamin, I could absolutely feel the I am here to stay factor, but I was too vain to see it through. My skin did not like it, and I did wait it out for a long time and nothing changed. Also, I was constipated when cyanocobalamin was and is the exact opposite for me. I also had this rapid weight gain that corresponded with the change (could absolutely be a coincidence, but it was weirdly rapid with no other factors changing that I could place) As soon as I returned to cyanocobalamin skin cleared and I was regular (and often those two issues are related, light bulb just went off as I am typing!). And lost weight.
Cyanocobalamin gives me more of an immediate jolt. Whereas hydroxocobalamin seemed to kick in more on day two and last longer, and there is nothing of a kick on injection.
Also, the rubbish might have validity. I bike and some days I can't figure out why I have an empty tank and some days I could ride for hours and hours. When all other factors seem equal. And sometimes I am weak on injection day, which leads me to think there are other factors at play. Honestly, I have stopped trying to figure it out. It is relentlessly frustrating at times.
pumped at a regular rate down the bile duct, to be converted by Intrinsic Factor to holotranscobalamin, which is absorbed into the blood stream.
The haptocorrin-bound B12 in the bile has the haptocorrin removed, leaving the B12 to bind to Intrinsic Factor (assuming you have any). The IF-B12 complex is then absorbed from the gut, the IF removed and the B12 squirted into the bloodstream where it can combine with transcobalamin to form holotranscobalamin ('active B12') or haptocorrin.
Once in the blood the holotranscobalamin will change by methylation, or some such process, to a useful form
Once in the blood the holotranscobalamin can be taken up by a cell. When this happens the transcobalamin is removed, then the top ligand (methyl, cyano, hydroxo, or adenosyl) is removed to form cob(II)alamin. This is then transported to where it's needed in the cell where it is converted to adenosylcobalamin or it is bound to the enzyme methionine synthase.
Thank you. I confess to an inadequate knowledge of the chemistry involved. (I am far better at Lagrange equations and so forth - at least, I was when I went to work. By now I have happily forgotten how to use them, too.) But the important thing I was trying to say was that a simple view of the processes involving the liver, the bile duct, the gut and the parietal cells simply suggests that there might be a problem with the parietal cells.
And I believe it was you, fbirder, who explained to me a few months ago, about where and how the IF antibodies effect the production (or non-production) of IF. I was grateful for that as well.
But the real point I make is that if and when one is properly diagnosed, and the amount of hydroxo is matched to the real needs of the patient, one can live a long and comfortable life.
But, so many that I see here suffer from the GPs who apparently know even less about PA than even I do! And when it comes to the chemistry, knowing less than I do is quite an achievement.
I saw a private GP the other day as mine has seen me once as an urgent case, 2 months ago. This was worth the money and referral to neuro and gastro. The private doc did notice nstygmus (eye tremors), I did not vomit or pass out whilst doing hand nose coordination but she could tell I was about to. As soon as I put my feet together to walk heel to toe - my whole body tremor kicked in and she said stop don’t do it. 😊
Re-reading your post of quality of life and issues with work may heavily weigh on your decision ? 🤷♀️🤷♀️ None of us want to suffer. It’s just a case of needs must. 😊
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