OMG: Just found this website... - Pernicious Anaemi...

Pernicious Anaemia Society

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DebraNL
DebraNL

Just found this website: gpnotebooktv.com/infectious...

🥴 no wonder uk doctors are so useless with B12, when they get info like this.

22 Replies
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Oh dear. I couldnt read it all but it seems the advice is to wait until you too ill to get there ??

I really do not understand the mentality of this .

The treatment should be maintained if working or reviewed if not.

Other things need to be ruled out on obviously.

Everything is struggling it seems . I'm not sure why dentists are now working face to face and nurses some hospital doctors.

For some reason no Gps?

As the system is they hold the 'keys ' to all doors within the NHS people are pushed to go privately.

The texting must stop. It come from a central place and the surgery unaware of what's being sent!

My neighbour had a text to arrange a flu jab due. After 2 days of unsuccessful ri ging he went to the surgery. The dor was opened but even if he waited outside an appointment tment could not be made??

I thought my surgery difficult.

Extra funding has gone o to the surgeries to cope in these difficult times.

Not sure quite what's going on. I do know alot of staff have left in our practice. No doctors though .

Usually The NHS rise to such challenges. More mergers are happening too

Thrones
Thrones in reply to Nackapan

I had a text from gp saying as my blood tests are normal no treatment will be necessary,my consultant is less than impressed.He has worded a strong letter saying I must have this 24 hour urinary calcium test done as if I have untreated hypercalciuria I could go into renal failure at any point so this must be addressed as soon as possible.

They did a deaf ear to his twice requesting a dexa scan on the nhs as this would help to determine if my kidney is leaking calcium and it’s not getting into my bones I think.

I got ticked off and went and paid the £125 to have the dexa done privately,I got the professor to do me referral.

I’m just disgusted with these gps hiding behind the Covid and breaking their contracts with us and not giving us the care that we’ve paid into the system for all these years for its bloody criminal what they’re getting away with,get back to work now like everyone else,my husband is a key worker and has worked since day one of this virus even though he shouldn’t with a heart condition,shame on them.

Espeegee
Espeegee in reply to Thrones

Health is sadly budget driven and those making decisions are basing them on the cost. Whilst I agree there should be some gate keeping of resources, they frequently target vulnerable users. Why should the NHS fund IVF but not T3? Why are they starting a new scheme handing out shakes and soups to obese people but have refused someone a Dexa scam requested by a consultant? I find it so illogical and infuriating.

Dee011960
Dee011960 in reply to Espeegee

You have targeted obese people that is so unfair, they could have mental health issues, some antidepressants put weight on! However, for over 20 years the NHS has been funding drug addiction, along with alcohol and smoking, if anything all these groups are putting a strain on the NHS budgets, but l worked within the NHS a couple of years ago, they use the extra money they get to put another layer of clinical management in, who don't see patients and your nurses, social workers etc on the front line are bearing the brunt of being under funded! Not only do they have to see patients they have to produce several reports, as the senior management decided they didn't need admin staff to assist them! I have had my B12 injection refused as of 24 August, when l was due my next injection, most of my symptoms have returned, especially the migraine headaches, I tried patches they haven't worked, I can't take tablets it upsets my stomach, B12 ampules are the least expensive and are beneficial to person who needs them, all gp's are doing is making more problems for the NHS in the future, as more PA patients will need NHS services due their treatment being stopped, very short sighted of the GP'S, as Government want Super Health Centres, depending on population of town, there maybe 1 or 3, not 4 or 8 gp surgeries and we all go via the Pharmacy!!

cocoa
cocoa in reply to Thrones

Sorry to hear the trouble you are having Thrones.

My conclusion is that when you go private, it is difficult to then get NHS treatment. Sometimes it works but not always.

I was told this by a professor at Imperial College in London. At the time I was insured but my insurance would not cover all the costs.

Thrones
Thrones in reply to cocoa

They get really arsey with me for going private but if they keep dismissing the severe pain I get then of course I’m going to keep trying to get it resolved and it forces me and many other people to use what little savings we have in the process.By going private ive found I have p.a ,Functional b12 deficiency ,large multiple kidney stones,we managed to rule out suspected Addison’s disease and it goes on and on.X

cocoa
cocoa in reply to Thrones

I agree ... what choice do we have.

fbirder
fbirder in reply to Nackapan

My GP is working normally (well, as normal as possible when only two people are allowed in the waiting room).

Two months ago I had a phone session with my GP to up my gabapentin dose. I went two weeks ago for my annual diabetes test samples to be taken. I had a phone session with the diabetes nurse last week. I'm going for my flu jab on Sunday. I have a F2F with the diabetes nurse in a fortnight.

DebraNL
DebraNL in reply to fbirder

Happy to hear you are able to speak/see your GP/nurse. I wish everyone was able to have that kind of support.

Just wondering, as you are very knowledgeable on these things, but have there been any trustworthy studies comparing injection to tablet? And then tablet v sublingual. Just wondering where the evidence is , that proves conclusively that tablets are as good as injections? And if there isn't any evidence, then why has the BSH made this recommendation in the first place? Aren't they supposed to practice evidence based medicine? My concern is that this video will make many GP's believe that the two treatments, injections/tablets, are equal. And once they get into this habit, will they stop, once Covid restriction are over?

Also, in reality how many people are actually tested to establish their cause of B12 deficiency? I wasn't. My daughter in law (just qualified as a doctor) told me how she loves giving B12 injections, but when I asked her does she try and discover why they are deficient, said, "Oh no, we don't do that."

Also the tests for PA are not always accurate. On the video she only calls it "true" pernicious anaemia if you have antibodies, and many people don't test +ve for these.

Yes she said for those on 8-12 week injections, carry on, but then added the caveat that, " the problem is , do you really want to bring them in to the surgery?" This gives the surgery an easy opt out excuse.

And, " we do not recommend switching to self administration during the Covid -19...".. so where does this leave patients?

"...It's all up to you and your policies". Umm, maybe patients could ask to see their surgeries policy on B12 injections. All seems a bit vague to me.

"...you might get patients who are significantly under treated".. why should patients wait to be significantly ill, before they get the treatment they need reinstated?

It's basically left up the each individual practice to "do your risk assessment according to whatever your practice has decided to do regarding injections". Sigh!!

I really felt this video did not give this condition the importance it deserves. If a doctor hasn't done some research on this, then from just watching this, s/he could easily come to the conclusion that this isn't a big deal, just give them some tablets, and retest their levels as they may not need any further treatment. Where did she say, ask the patient how they are feeling? Just going on blood test values, as many of us know, does not give the complete picture, and many go untreated because of being in range.

Yes, there was additional info in the boxes, but if someone just watched the video, they would miss this important sentence that says "....aiming to have the shortest possible break from regular injections."

I was hoping for better.

fbirder
fbirder in reply to DebraNL

The video was put together to go through the BSH guidelines on treatment of a B12 deficiency during the covid crisis. That's what it did. It was reporting. Like a news program.

There is no definitive study on oral vs IM vs sublingual.

Oral vs IM has been done a few times. All of the studies were done on people with a B12 deficiency. Almost all made no effort to determine a cause. Many had people with a dietary deficiency (no surprise that pills worked for them). Most were carried out before it was known that drugs like PPIs and metformin could hinder B12 absorption. So the results are useless. That's why the PAS are collaborating in a proper test to compare pills and injections in people who actually have PA. pernicious-anaemia-society....

All the tests that claim absorption of B12 via passive diffusion have one thing in common. They all claim 1% of a 1000 mcg dose is absorbed. That's 10 mcg. It is a striking coincidence that normal people (with no absorption problem) will absorb about 10 mcg from a 1000 mcg dose via the normal Intrinsic Factor route. But that means that normal people who take a 1000 mcg sublingual dose should absorb 10 mcg sublingually, 9.9 mcg (1% of the 990 mcg that is swallowed) via passive diffusion, and 10 mcg via the IF route. That's 30 mcg. But they don't. They absorb 10 mcg. Which means the amount absorbed sublingually and via passive diffusion must be very close to zero.

If you could absorb B12 via passive diffusion then we would all be taking B12 suppositories. The rectal membrane is as easy to cross as the membrane of the mouth. But a rectal dose will be in contact with the membrane for a much, much, longer time - hours instead of minutes. Instead of a paltry 1% absorption it would be closer to 50%.

It's no surprise to me that passive absorption (mouth, gut or rectum) doesn't work. Here is a paper on the decvelopment of sublingual tablets -pharmtech.com/view/consider...

And some excerpts.

In general, a drug formulated for sublingual or buccal administration should have a molecular weight of less than 500 (as free base) to facilitate its diffusion.

B12 has a molecular weight of about 1350.

For efficient absorption through the oral mucosa, the drug must be hydrophobic enough to partition into the lipid bilayer, but not so hydrophobic such that once it is in the bilayer, it will not partition out again.

B12 is hydrophilic. It will not dissolve into the lipid layer.

Because drugs diffuse through the lipid bilayer in the unionized form, based on the pH-partition theory, the pKa of drugs also plays a crucial role in drug transport across the oral mucous membrane.

B12 has a pKa of 1.8, which means it is easily ionisable. Very little of it is in the unionised form.

Finally, the really knock the last nail into the coffin that is the idea of passive diffusion in the mouth. Saliva contains a protein called haptocorrin. This binds with any free B12 it finds. The HC-B12 complex is bigger (molecular weight 61,000) by far than anything that can diffuse across membranes.

"On the video she only calls it "true" pernicious anaemia if you have antibodies, and many people don't test +ve for these."

But she doesn't say that 'true' PA is the only non-dietary cause. Just say you have achlorhydria (also mentioned).

Yes, there should have been something telling GPs that they should assume a B12 deficiency is non-dietary if the patient claims to eat plenty of meat/fish.

"And, " we do not recommend switching to self administration during the Covid -19...".. so where does this leave patients?"

It leaves the patients who do self inject in a good position. It also means that GPs will have no excuses for not teaching self-administration after the covid crisis.

Actually, those updated BSH recommendations were put together by the BSH after consultation with the PAS. pernicious-anaemia-society....

The narrator explains that people with a non-dietary deficiency "have been getting their injections every 8 to 12 weeks. Well, you wanna carry those on".

She then goes on to say that people injecting at home can carry on as normal. This is, I believe, an important point. Many GPs froth at the mouth at the thought of patients injecting themselves at home. And now we have the BSH and GP TV saying that it's perfectly acceptable. If your GP turns into a gammon joint at the thought of you injecting yourself just point them in the direction of the BSH guidelines on B12 and covid-19.

Next GPs are told their options for how patients can get their jabs - at the surgery (my GP's choice), pharmacies or district nurse.

Only then does she go on to tablets (which, apparently, are in short supply) and says that

"Patients should be advised to monitor their symptoms and should contact their GP if they

begin to experience neurological or neuropsychiatric symptoms such as pins and needles,

numbness, problem with memory or concentration or irritability."

It's this last bit that seems to be a problem. Doctors have been using the covid crisis as an excuse to stop all injections. None of them seem to be warning patients that they need to contact their GP if their symptoms return.

But the video is just an explanation of the BSH (with the PAS) recommendations. I can't really blame the video makers for anything in the video.

jaybirdxNHM
jaybirdxNHM in reply to fbirder

Thanks for your incredible knowledge.xx

clivealive
clivealiveForum Support

Hi DebraNL being profoundly deaf and as there were no subtitles I was unable to follow the video, however reading through the comments this has prompted these have made me realise how fortunate I have been with my surgery.

I have had P.A for over 48 years so in March at my routine three weekly B12 injection, knowing that because of my age and diabetes I would be "going into lockdown", with my doctor's permission, the practice nurse showed my wife Gill how to give them to me providing us with four sets of needles and syringes.

(After nine weeks we purchased 100 more complete sets which by my calculation will see me through until I'm 84 :) )

A fortnight or so back I was invited to have a 'flu jab at the surgery and an appointment was given for last Wednesday evening.

Last Monday I had to have the diabetes HbA1c blood and urine tests taken at the surgery which were carried out following all the guidelines with me as the only patient in the waiting and treatment rooms. Whilst there the nurse gave me the 'flu jab thus saving me another trip and freeing up the appointment that had been made for me.

On Monday of this week I had a 'phone appointment with my doctor to discuss the blood test results (which were excellent by the way) so all in all I have no complaints about doctors or staff at the surgery with which I have been a patient for over 54 years.

I can only wish that all my fellow members of this community could receive the same level of treatment and care from their practices that I do from mine.

Goodnight from the U.K.

Gambit62
Gambit62Administrator

There have been a lot of studies around how effective passive absorption could be, including some larger scale patient trials in Canada, where about 2/3rd of patients actually preferred high dose oral to injections.

The studies say on average 1% but the good ones do make it clear that there is considerable variation in the effectiveness of absorption - even in smaller scale studies

There have been some case studies looking at effectiveness of passive absorption in particular disorders, including PA and they have tended to be around the working for 2/3 and not working for the rest.

I am not aware of any research into why the rate/efficiency of passive absorption varies so much. There is a swiss study that found that even when serum B12 levels were raised through high dose oral that didn't necessarily mean everything was okay because they found quite significant rates of functional B12 deficiency (by looking at MMA and homocysteine levels).

Personally I and others on here do find high dose oral can be quite effective, but others find it has absolutely no positive effect for them.

For me, the ability to use a nasal spray (little more efficient than high dose oral - averaging 2% - was what actually got me to a point where I could start to recover - though I was using it a lot more (3-4x the doses that would have been used in studies. I now tend to use high dose oral as this gives me a chance to use adeno and methyl B12 - and mixing B12s does seem to be what I need. The problem with high dose oral is that the sources are not quality controlled to the same extent as pharamaceutical grade products, so the dosage can vary. However, it tends to be doses made from plant or animal extracts where this problem is worst and that doesn't apply to B12.

At present there isn't any way of knowing if a person is going to respond to high dose oral other than try it.

Shocking!! Referring to IF test like it is the only way to disgnose. Also NICE guidelines appear misinterpreted. Hope she gets B12 deficiency and suffers badly 😡

So you want to shoot the messenger?

SHE DID NOT WRITE THE BSH GUIDELINES.

They were written by the BSH, in consultation with the PAS.

I did watch it at 5am, I assumed, obviously wrongly, that she was quoting her opinion, not BSH guidelines. Although she did seem to condone the giving of tablets, and IF being the only way to diagnose PA. I am lucky I am getting my monthly B12 jab today, others are not as fortunate as me, as with videos like this no wonder GP's are not treating patients correctly.

It says at the beginning that it is an explanation of the BSH guidelines.

🙁so if, like me, you don’t have a solid PA diagnosis you just need to take normal strength B12 supplements and hope for the best! Terrifying to see someone being so matter of fact about something that can have such a huge impact on people’s lives.

fbirder
fbirder in reply to Yogijo

Did you watch the video?

Did she say that only people with a positive IF antibody test are allowed injections?

NO!!!!!!

Yogijo
Yogijo in reply to fbirder

Yes I watched it! Only those with antibodies or issues like no stomach acid or a gastric bypass or some bowel issues need injections. People not in those categories were classed as dietary and could manage with supplements of 50-150 micro grams per day or 6 monthly injections and before you put them back in injections you should check B12 again because if they’ve been having injections they probably have enough stored to keep them going for 12 months. 😡 I don’t have a PA diagnosis but when my injections were pushed to 4 months I started getting pins & needles despite the fact that I was taking supplements.

Quite interesting.

It seems others, like me, see the negatives about this video and others see the positives.

I think that shows that the message in this video leaves too much up to personal interpretation and as such cannot really be an effective tool for guiding GPs in the treatment of B12 deficiency, of whatever cause. If we, (as in this community who know more about B12 than the average doctor through personal experience) , can interpret this in different ways, how then can we expect doctors (uneducated in B12) to get a clear answer from this .

Yes, I know Martin from PAS helped with these guidelines, but I can only guess it was a compromise, until NICE update their guidelines.

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