Are there any medical guidelines specifically relating to treatment for functional B12 deficiency?

[Cherylclaire]

It seems that my NHS injections (1 every 2 months) are primarily being stopped because I am self-injecting every other day -and so once knowing this, they would be "overdosing" me, as this frequency would be in contravention of the medical guidelines. I have been self-injecting at this frequency for 2 years now.

Since my condition had been redefined in 2016 as "Functional B12 deficiency" by my GP, which was confirmed by a leading hospital's laboratory, what medical guidelines would be consulted regarding frequency of treatment for this condition ?

After getting told I had functional B12 deficiency, I got 2 injections a week for 6 months. I would imagine this new frequency was a decision based on expert advice. My doctor's certificate read "serious B12 deficiency".

I have been told by the Adult Inherited Metabolic Diseases consultant that if my DNA shows that there is a problem at cell level, they would not advise more than 2 injections a week.

Is this, then, the official treatment : 2 injections a week ?

Everyone has commented on my recent improvements: consultants, GP, nurses, friends, family, my partner, my line manager and other work colleagues. I am now getting much closer to my goal of a symptom-free day. My most recent blood test results are also looking better : folate, ferritin (not up to 80 yet but rising), TSH, FT4, FBC.

I have not yet had the results of my DNA test (and further appointment) due from Adult Inherited Metabolic Diseases and have a report (and further appointment) due from Oral Medicine.

[Gambit62 Administrator]

There are no standards relating to treating functional B12 deficiency.

Exactly what causes functional B12 deficiency isn't understood yet - I suspect it is genetic but probably not the variants that the expert you have been in contact with is referring to as functional B12 in your context would be latent genes that are activated by high serum B12 and the variants they are talking are likely to be ones that manifest from birth so don't need this specific condition to activate them.

[Cherylclaire Forum Support in reply to Gambit62]

So without an advised treatment regime from NICE/ BCSH etc. , can it still be said that my treatment for my particular condition is contravening medical guidelines ?

I haven't felt this good for years, Gambit62 , and do not want to give up just when things are improving, if it is possible to get further improvement at this frequency.

Am I wasting my time with this ?

[Gambit62 Administrator in reply to Cherylclaire]

if you are treating yourself and seeing improvement then I'd suggest continuing.

If there are no guidelines then you can't either comply with them or not comply with them.

There are guidelines in relation to treatment with injectable B12 - just not in relation to treating a functional B12 deficiency.

I hope that you do find a way of working with your GP - definitely the best way to go if it is a possibility.

[Alfabeta in reply to Gambit62]

What does functional b12d mean exactly? Does it mean one cannot absorb b12? If so, how is that different from what causes PA. ?

[Gambit62 Administrator in reply to Alfabeta]

PA is an auto-immune condition that affects the gut attacking the mechanism that allows you to absorb B12 from your food.

Functional B12 deficiency occurs where there is high serum B12 but cells do not have enough B12 to run all the processes they need to run. It is totally independent of PA

[Alfabeta in reply to Gambit62]

Thank you for your response. How would one get enough b12 with functional b12d - wouldn’t one just die?

[Gambit62 Administrator in reply to Alfabeta]

functional B12 deficiency is a response to high serum B12 levels - one treatment, in theory would be to remove the factor that is causing high serum B12 levels (eg treating an underlying liver or kidney problem) so levels fall back into the normal range. I have no idea if that would work because I don't think there have been any studies on that - though high B12 is a marker for liver and kidney disorders and presumably levels do restore and the functional B12 deficiency goes away as a result or the literature would have mentioned need for B12 injections.

Functional B12 deficiency seems to be the result of a change in the efficiency with which B12 gets from blood to cells so raising B12 levels and keeping them high would be another way of going and does seem to be effective, particularly in people who have to have injections.

[EllieMayNot]

I would say that your symptoms/relief are the best indicator of your personal need. Since everyone is quite different, we all need to learn how to "listen" to our own bodies. It sounds as if you are making a remarkable recovery and that your intuition is paying off far greater than any medical advice.

I am not a medical professional but I firmly believe that we need to be our own health advocates and, if we know something works and is safe, then we need to do what is necessary to regain and sustain health.

[Cherylclaire Forum Support in reply to EllieMayNot]

Still thinking (hoping) that I can get reinstatement of NHS injections if I can approach it the right way. Thought perhaps the fact that investigations and appointments with specialists are ongoing, and that functional B12 deficiency does not seem to have treatment guidelines at all might help my case with the practice and get decision reversed .

Perhaps it doesn't matter whether I have their support or not, but I would rather we were working together and able to be honest with each other. I understand that self-injecting every other day must sound like a frightening amount to them, but I am more frightened of deterioration and going "back there" again. It has taken far too long to make progress and I can't give up now.

[EllieMayNot in reply to Cherylclaire]

You certainly have the right attitude and I hope you get them onboard!

[Nackapan in reply to Cherylclaire]

I hope your surgery rethink the decision. You have proof that the b12 injections are getting you well. Gps know more reserch is needed. As I said on an earlier post if they worried about the safety of si. They should provide your treatment! I find it so upsetting that you are transparent and want it on your medical notes the frequency you need and they have through ignorance turned it around on you. There are only 2 gps out if 6 that 'allow' me to have injections frequently at present. I'm starting g to be questioned again and asked to have a B12 test. I keep saying that until I'm better I've no choice but to carry in as any alternative treatment they have offered has made me worse.

So if they withdrawal your treatment, how are they going to treat you?????

I've still not got a reason why so low in the first place.

Not megabolastic anemia. Hb fine

One neurologist I saw said they didn't not know why some people do well on more regular injections. But he acknowledged they do.

Another said I was poisoning myself !!

Anyway a meeting is needed if possible or a letter or a consultation.

I wish you the very best with this.

[Cherylclaire Forum Support in reply to Nackapan]

Well thankyou, Nackapan , even after 4+ years of trying to get better by finding a frequency that works, you sometimes wonder if maybe this is something else.

Which is ridiculous really - what else could give you such varied symptoms as arrhythmia, hair loss, angular cheilitis, burning feet, vertigo, fatigue and mercurial mood-swings- to name but a few ? No wonder experts give such conflicting reports !

I think the air-hunger "yawns" that make people around you jump must be unique to B12 deficiency (I've never seen anyone else do it !), and yet still my GP thinks this is anxiety. I said "What- in the Sainsburys checkout queue ?" and laughed. But you would think by now at least this might be a more recognised indicator of B12 deficiency. After all, we all know about it, even those of us who don't experience it personally.

My usual GP has been very supportive, is aware that 2 years of self-injecting every other day has finally started to control my symptoms, and has sent me to many consultants. I cannot fault her care. She also knows about the current PAS research and the trial results showing what we all know: some of us need more B12. Only this time, it is a clinically identifiable definition !

This alone is insufficient for her to argue against the practice on their decision.

The only consultants who have been of any real help to me, in spite of all those tests, have been ENT and Oral Medicine specialists, who have recognised B12 deficiency on sight. No tests required. The first one told me that I was doing the right thing by self-injecting every other day and not to give up because it would take a very long time. The second is going to write a report to my usual GP suggesting a gradual reduction of injection frequency with close monitoring. This way, if I started to deteriorate, it would be picked up sooner and be less dramatic a decline, and I could increase the frequency again.

I am not averse to this option and this report could help give my GP more evidence for asking the practice to reinstate my injections. I don't care whether the injections are mine/theirs really. It also seems too early to stop injections when consultants appointments and investigations are not yet completed.

So my next step is to wait, see what the Oral Medicine consultant's report says, hope it helps my case, hope my usual GP can get the practice decision overturned, and in the meantime keep on self-injecting.

Wonder if the Oral Medicine consultant will really ask in the report for me to get 3 IFab tests ??? (I'd have to reduce injections before that happens !)

Wishing you all the best and will let you know what happens next. x

[fbirder in reply to Cherylclaire]

Or don't stop injections before the IFAB test, depending on what result you want. High levels of B12 in the blood can cause a false positive for the IFAB test.

[Cherylclaire Forum Support in reply to fbirder]

Just really looking for the truth. Tired now. It's been way too long.

[Elizabeth5162 in reply to Nackapan]

That would made me cross poisoning by taking regular b12 injections pure lies

[Nackapan in reply to Elizabeth5162]

At the time upset.I was relying on the injections and still am! To make improvements.

The comment by a neurologist completely threw me

[Cetus]

CherylClaire wrote: "I have been told by the Adult Inherited Metabolic Diseases consultant that if my DNA shows that there is a problem at cell level, they would not advise more than 2 injections a week."

A maximum of twice a week seems low. I would guess there must be extreme cases where more frequent injections are required.

On the other hand, 1mg of injected B12 every 3 or 4 days is quite a lot. I don't know what to think.

I'm currently taking 0.5mg B12 every second day. I seem to flag if I extend the period to more than 2 days.

However, I get overloaded and feel a bit unwell when I take a full 1mg. This sensitivity may be related to another illness I have been dealing with and not apply to others.

[Cherylclaire Forum Support in reply to Cetus]

A maximum of twice a week might sound low to us, but would certainly help to quell the panic re "overdosing" if this was declared as an official frequency, and declared as necessary for a minority.

GPs / consultants might then feel too foolish to continue warning patients about B12's "toxic / highly addictive / carcinogenic" qualities,or the "euphoria experienced" from self-injection- and get on with the business of helping us to make our lives as symptom-free as possible so that we can perhaps try to maintain our relationships and keep our jobs !

I'm not sure if 2 injections a week alone will ever be enough for me to do this much, but could be persuaded to give it a trial under close monitoring by a GP familiar with my range of B12 symptoms who would choose to believe me if any returning symptoms were of the non-visible variety, rather than wait for complete deterioration. Big ask ?

Ideally, I probably would prefer 0.5mg daily rather than the 1mg every other day that I currently self inject, but this is working more often than not and some symptoms are going or gone. I am aware that they could come back without warning and without changing anything identifiable, so remain uncertain but optimistic.

I wonder if anyone actually gets B12 injections administered twice a week indefinitely ? I got them for 6 whole months once, and for quite a while, it did look like the answer.

[Nackapan in reply to Cherylclaire]

Yes agree.

Did you get your b12 injections reinstated?

At the moment my surgery are flexible with b12 injections. I've varied from one week to recently tried 3 weeks . 3 days before felt worse and injection actually picked me up. Not felt that b12 buzz before people describe

Off to neurologist today .Trying to have low expectations. That is difficult.

Wishing you well

[Cherylclaire Forum Support in reply to Nackapan]

Got a bit tired and disheartened because despite all the effort that has gone into getting this far, a panicking GP ( one who has no real idea of my medical history and doesn't know me) has used his authority to get my NHS injections stopped, - especially disheartening as investigations by specialists are still ongoing: Metabolics (DNA results) and Oral medicine (swab culture results)appointments in January.

Educating myself on this subject has been difficult enough, but GPs really should know by now that B12 is not a dangerous vitamin, and they should also be aware that some of their B12 deficient patients will be self-medicating.

Not from choice, but because one injection every pancake day won't begin to control their symptoms and it can get very frightening.

A fear that far outweighs their misguided and unfounded fear of us "overdosing".

For now, I'm leaving it, but thought I might send said GP a book and let Martyn Hooper educate him instead (if he reads it!)

Hope it went okay with the neurologist and that he/she gave you some hope of real help - and a better opinion of neurologists !

[Nackapan in reply to Cherylclaire]

I'm so sorry to hear this.

I believe in transparency. I also understand why people don't let their gps know they are self injecting. All because of ignorant/arrogant GPs. They really need to sort this out.

Also to realise just how many have to self inject taking all the responsibility for their own treatment.

This, if known should send out a very strong message.

I'm spreading the word in the best way I can. As I worked in the NHS for 36 years I know people from commissioners to health assistants. Some know me very well and have been shocked how I'll I've been. Some thought I'd be skipping down the road after loading doses. Some appalled blood test simply not done.

The nurses seem most receptive to literature I feed them.

They are a strong force.

As for the neurologist I saw yesterday. He couldn't explain my light sensitivity or head pain and the constant

vice like feeling of glasses clamped to my head that gets more and more painful as the day progresses.

He thought my recent shift is positive. So no insight gained in what is actually happening in my head! Apart from muscles cramping and nerves disturbed.

He has b12 injections himself and can't find a B12 specialist. He did say he is very aware when he needs a B12 injection(he didn't reveal how often. )

He knows I have them 2 weekly. He also said some need and benefit with different regimes!

to trial propranolol if needed. Like last time but I didn't take it after reading side effects and discussing it with gp. He did say Mri scan okay 'for my age'

I felt deflated as thought symptoms clearer for him to get what was going on. I was Ashen from lights in the hospital despite hat and dark glasses. He witnessed the stagger walk lights give me.

All in 17 minutes! Back to Go care.

Hope you get more to work with from your investigations.

It's wise to time and choose your fights.

[Cherylclaire Forum Support]

"Find a good GP and never see anyone else" is what I think I've learned from this.

By "good" I don't mean B12 deficiency expert, because I now don't believe there are any in the medical profession. I mean caring, observant and willing to do the research . This is all that you need in order to get through this.

I used to think if I just keep going, I'll find that one person who recognises what this is and how best to treat it, but it's been 4 years now and I think that one person will have to be me.

My good GP told me to just keep doing what I'm doing. Perhaps knowing it works without ever knowing why might be all you get. For now at least.

You keep going, Nackapan - always good to hear from you.

[Nackapan]

Thankyou. You are right about finding a doctor that LISTENS and is open to doing investigations. There isn't a B12 specialist it seems. No funding by drug companies to fund ithe reserch and training probably.

One of my grown up children was finally led on the right path to a diagnosis by being seen by a doctor in casualty. So BY CHANCE

After miss diagnoses of chronic fatigue, fibromyalgia, tried to send her down the mental health route ect ect.

That one doctor simply took an interest .

Severe b12 defiency

Megoblastic anaemia

POTS

HEDS

After years of pain then remission ect ect.

I've a horrible sick feeling that b12 defiency has been around for years and at the root of some of the problems.

Especially now it's happened to me now. Obviously the rest of the family have now been tested!!

Got my mum at 89 on injections too. She hadnt to been tested!! Helped a bit especially with having a clearer mind.

Yes you keep gpong and don't let it get you down ☺

Hope we all get some more answers soon.

[Cherylclaire Forum Support]

I'll let you know Nackapan . We can only keep trying for answers.

In the meantime, I will continue with self-injection every other day, daily multivitamins and minerals tablet, additional iron tablet every other day, vitamin D tablets twice a day- and hope this lot continues to stop mood swings, hair loss, bleeding gums, impatience, dizziness, stiff feet, tingling, yawns, burning mouth, angular cheilitis, diarrhoea, tiredness, concentration problems and memory loss from getting any worse !

Progress has been made: I don't need naps in the afternoons, don't have lost hours, don't have to tell legs to walk, don't end up shouting/ crying, don't feel seasick at peripheral movements, don't get lost in my own neighbourhood, don't smell things that don't make sense at all and don't go for long walks alone just so that I don't have to concentrate on anything/ do anything/ talk to anyone/ think - and I can now at least work 2 days a week.

And if all this lot can add up to anything other than B12 deficiency (alongside low ferritin, folate and osteoporosis), the consultants have now had 4 years to find it.

Despite relating all of the above to various consultants, they still seem to be mainly concerned with the frequency of my injections . . >sigh<