survey of people who self inject for B12 deficiency.

[AlwaysTiredxxx]

I found this which may be of interest to those in UK. It'd a survey of people who self inject for B12 deficiency.

google.co.uk/url?sa=t&sourc...

[Pickle500]

Thanks for sharing, this is great to have a copy of.

Fingers crossed it raised awareness in medical communities. Maybe they will think twice about it in the future? The problem is, only 6% of people are affected by it. So many GPs will probably come across it once a year if that.

This reaction is a bit 'ranty' so feel free to tune out or ignore it! Just had to give my view.

I have a friend who grew up in Eastern Europe, and their experiences of medical care is vastly different from what they say they get in the UK.

They say that all Doctors are aware of diet and nutrition and always ask patients what their diet consists of, if they're vegetarian or vegan, and other lifestyle factors like sleep and stress.

While many UK GPs do ask about stress, I have never had a GP ask me about my diet. And since roughly 50% of surveyed respondents to this paper did have PA, around half did not have PA. And so their diet is bound to play some part in their deficiency.

B12D is also known to be linked to thyroid conditions, yet seemingly no GP in the UK ever asks about thyroid health or even prescribes thyroid medication to patients. Another friend lives in Germany and had a thyroid nodule removed, and then was prescribed medication. But when I had mine removed I was told half was enough and to 'see your GP if you have symptoms'.

As the paper highlights, almost half of people are not treated with dignity or respect with b12 D symptoms, and that has been my experience across the board.

Doctors in the UK simply do not have any knowledge or training on this matter and that is a complete disaster for UK healthcare. The fact that we have to go to Germany for treatment says quite a bit about the state of Doctors knowledge in this country.

Shaming them or comparing UK medical practice to other, clearly more aware countries, seems to be the only tactic to get what we need and deserve. Particularly since parliamentarians suggested 'B12 is a women's problem'.

It's like living in a communist state. It's just that the former communist states are now far more ahead than the UK when it comes to healthcare.

Thanks for listening!

[Nackapan in reply to Pickle500]

Yes I agree on the whole.

My experience was it was 'assumed dietary'

As tested negative forcparietal cell antibodies

I was not asked what I eat.

My diet is not the reason fot my deficiency.

A huge percentage fall into this group of an unknown absorption problem..

I agree diet and drink shoukd be discussed.

Most obvious cause vegan diet or excessive alcohol.

Surgery

Parasite infestation

But probably a lower percentage thsn the unknown.

Triggers

Menopause.

Other triggers not on the gp's radar but have been written about.

Earth containing less b12

Thd truth of the matter is:

Disinterest

Ignorance

No research

No conclusive blood tests

[Pickle500 in reply to Nackapan]

Perfectly said Nackapan

Absolute madness that you weren't asked what you eat. Yet they assumed it was dietary because they couldn't find any other reason to check the box?

I've been reading that even reduced levels of B12 (as opposed to vegetarian or vegan diets) can impede gut microbiome levels over time. So not only is there a depletion but the intestines can become unhappy with not having enough B12 to balance gut flora and then malfunction. Plus, then, other functions suffer because they need B12 for detoxification and managing stress, sleepless nights etc.

So if someone's body is heavily stressed by something like menopause, or maybe intense physical training or the daily grind, and there's not a lot of B12 going in then it can deplete stores faster.

I know dietary deficiency is off top here. But I do strongly feel that diet can create absorption problems that may not be PA but intestinal or gut malfunctions. And alcohol can be included as a dietary intake.

Either way, I think GP's know it's highly complex and don't have time to think it through. So you get the treatment and they move onto the next.

What we could really do with is an independent examination and enquiry. Dr Chandy's book goes some way towards this.

But if I ran the medical system, I'd have any suspected or proven B12 deficiencies referred to a gastroenterologist and make them become an expert in B12. Then it's up to them to suggest neurologists or hemotologists. But they should be the expert, since it really all starts there.

We can dream at least!

[cloudspotting in reply to Pickle500]

"I'd have any suspected or proven B12 deficiencies referred to a gastroenterologist and make them become an expert in B12"

I recently had a gastroscopy for suspected Gastric Atrophy and asked the nurse prepping me for the procedure whether my Parietal Cells would be looked at and he replied 'Parietal Cells, what's that?" I also asked the head clinician from the team doing the examination who said they'll be included in the report. When I then requested the results, I was told 'Oh no, we don't test for Parietal Cells' !! The whole procedure took 10-15 mins and was out in the car park before I could gather my thoughts. It seems the whole system, not only the skill levels of key practitioners is not quite functioning as well as expected. ... My mini rant now over. How can we develop creative strategies for patient feedback that cut through the ignorance, defensive obfuscation and induced stress in the system?

[Pickle500 in reply to cloudspotting]

It's sort of mind-boggling really. Seems to me they're basically trained in how to put a microscope down your throat and if they can see something dodgy they'll deal with it.

Otherwise that's it really, nothing much more can be done.

The gut remains a mystery to the medical profession because they don't study it. It's sort of basically medical school to cover all the basics and then they choose a specialty.

The service we get is to prevent you from dying. So if anything looks tumourous, they'll deal with it and move on. If it doesn't you're on your own.

The only solution is demand. If demand is high enough for medics to work out these issues then they have no choice - they have to. But since B12/gastro issues are relatively rare - and most of us have to manage it ourselves - the pressure is off.

It was only 30 years ago that cancer was still considered a niche area. But since rates have grown in that time, medics have had no choice but to increase their knowledge and make sure they have a high suspicion early on to save more lives.

And with the popularity of vegan and plant-based diets, I think it's likely this will happen in the coming years.

[Beginner2 in reply to Nackapan]

You should try living in Gloucestershire.👿😠😡👊

[Nackapan in reply to Beginner2]

Yes I know how bad your area is.Bad 👎

Bad enough fighting for everything here.

Take nothing for granted.

So glad have own supplies too.

Can't get an IM b12 booked in .

One p/t nurse on holiday.

Then leaving .

Receptionist sounded pleased to tell me that.

Repeating the same old record I'm lucky and not due an injection.yet.

To wait my turn.

They, I know think I make s fuss over nothing and shoukd be in 3 monthly.

So I have my prescription too.

But they don't prescribe needles or Syringes.!!

I've been through alot of hoops.

Really hope change is on the way .

Getting weary of the battle .

[Litatamon in reply to Pickle500]

"B12D is also known to be linked to thyroid conditions, yet seemingly no GP in the UK ever asks about thyroid health or even prescribes thyroid medication to patients. "

Why is it?

I am not sure I have ever fully understood the connection. Obviously absorption issues, but why?

[helvella in reply to Litatamon]

There is little good evidence but I'll try a few ideas.

In hypothyroidism, stomach acidity often reduces. Which affects the ability to digest in the stomach which is, I believe, a necessary step to getting B12 from food attached to intrinsic factor.

Gut motility is often reduced.

The microbiome often changes.

Liver issues are common and we see many who have gall bladder issues. We can expect these to impact on at least the efficiency of entero-hepatic recirculation.

If someone is prone to autoimmune disease, as in they already have an autoimmune thyroid disease, developing another (such as PA) is simply more likely.

"B12 levels were often low whatever the etiology. "

Thyroid and gastric autoimmune diseases

pubmed.ncbi.nlm.nih.gov/191...

[Pickle500 in reply to Litatamon]

Hormones..?

I'm not a scientist or a medic. Far from it. Just curious to see patterns. Thyroid produces hormones. And B12 is like the oil to the thyroid's engine. So if there's a breakdown in one or the other then the endocrine response to hormone production and regulation maybe starts failing.

So in Nackapan's case, the huge shift in hormones during menopause may have put pressure on the thyroid or B12 stores or both.

But since a gastroenterologist is not an endocrinologist, neither may ever make that connection. As they didn't in my case.

This is quite a good, medically approved article. But do disregard their suggested treatment for PA or B12 deficiency. Doctor's don't know everything, right?: thyroidpharmacist.com/artic...

There are so many variables. And GP's have 10 minutes to do their job.

But the gastros and endos need to talk to each other at least. If someone has thyroid problems, they should be referred.

Or basically, western medical systems aren't working anymore. And it's time we started seeing the interconnectedness of disease.

[Nackapan in reply to Pickle500]

That makes sense.I was never referred to an endo or gastro.

Was referred to a neurologist as my main symptoms indicated thus course.

I was dso ill ag the time just accepted that.

Did see 3 a had different theories

More upset snd confusion.

[Nackapan in reply to Litatamon]

I was tested several times for thyroid issues over 3 years. Autoimmune diseases cxn come in clusters .

Was also tested for coeliac disease.

Mitochondria

ANA

Auto immune liver disease

ESR

Not given an IFA test though ?

Was given an parcel cell test befire my first injection.

One Gp suddenly pulled out all the works.

Including a brain mri scan.

Whe brain CT clear in casualty

She was scared at the sight of me.

[Hamayeshguy]

In my case malabsorption due to allergies and stomach low acid caused deficiency. I can absorb pills in oral way but I can't absorb from foods efficiently and through time caused sever deficiency and very bad symptoms. If I defeat COVID symptoms I'm sure I can get rid of B12 deficiency neuropathies but probably takes more than three years to completely be free symptoms.

[Hidden]

What an interesting report. There is a follow up to it needed to see how many GP’s and neurologists read it and agree with it. While ever frequent self injection to deal with symptoms is rejected by the professions as placebo or dismissed as without proven effect then we are always going to be ignored as irrelevant. We are both a complication and expense they can do without.

One aspect of SI which doesn’t seem to occur to the doctors is our willingness to actually do it to ourselves. I can only speak for myself and my daughter to say both of us do it when driven to it rather than by choice. We are not drug addicts eager for a fix.

We are all fortunate that our German suppliers are still prepared to keep sending us our vital medication. We need there to be many more physicians to be amongst our cohort.

[brainchild]

That's a good start for awareness raising, in the right journal. I would say that the figure of 6% in the community is high and probably an underestimate as so many people self diagnose. Do you know why Fig 1,2 and 3 are missing?

[AlwaysTiredxxx in reply to brainchild]

No idea why figs are miszing😕

[Cherylclaire Forum Support]

As has been discussed previously on this forum (and also admitted by the researchers), closed social media as the sole source of participant recruitment for this research will be likely to skew any results - particularly where age is a known factor in these results.

Percentage-wise, the older groups are not well represented, which then skews the self-injecting percentage- as it was acknowledged in the survey that older participants would be more likely to self inject but less likely to use social media sites.

This would also bring into question the view expressed that social media discussions may be influential in raising dissatisfaction with medical care -and potentially, then, influential in decisions to self inject !

IFab testing, as we are all aware, is only ever going to scoop up between 40-60% of those who do have PA, meaning that we can only talk about numbers of participants diagnosed with PA by positive IFab test result -not numbers of participants with PA. Not all other causes for B12 deficiency are diet-related. SIBO / IBS for instance will both compromise B12 - one by vitamin robbery by bacteria, one by fast transit reducing absorption opportunity.

Not all other causes for B12 deficiency have been discovered yet - and probably cannot be, until there is a better means of ruling out PA as the cause. Or in, of course !