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Pernicious Anaemia Society
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GP advises against going on forums such as this as most people on “these types of forums” are likely to be mentally ill 😳

Just been to see third doctor in a week re B12 symptoms and informing them I will be self injecting from hereon. I’m being referred to a neurologist as these symptoms “can’t possibly be linked to b12”. I told her I am becoming more informed about this condition and made reference to this forum. She said “you must remember that most people on health forums usually have other health conditions and have other mental health problems such as depression etc. And to look at the broad spectrum of the illness and look to the people that the three monthly injections are working for.

She advised strongly against self injecting as it’s not licensed in the UK and I’m going against protocol and that they need to know exactly what I am taking. And wanted to know where I was getting it from etc as often they aren’t the real medication and just placebos.

She was understanding to a point when I said that surely most people with illnesses are the best informed having done so much research and why isn’t this listened to. She agreed with this but still was still sceptical.

It’s really opened my eyes to the struggle of everyone on here to get the Uk medical profession to look outside the box. Left more depressed than when I went, and if b12 doesn’t cause depression which we know it can, GP’s are certainly pushing it!

Won’t be mentioning self injecting anymore will just have my eight weekly and top up inbetween. Ampules and syringes on order. Being it on !

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My gp said that immediately after diagnosing me with chronic fatigue syndrome, which I think we all know is a blanket term for “we don’t know what’s wrong with you”!

Just as well I did look at these forums or I would still have been moping about thinking my life was over. As it is I’ve learned some valuable things from this and other sites and I’m feeling much better and well on the way to being back to normal again. Cfs it wasn’t!

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Too true Murphysmum !

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Martyn Hooper, chair of PAS has blogged about PA being misdiagnosed as ME/CFS.

martynhooper.com/2018/02/10...

Misdiagnosis of B12 deficiency

b12deficiency.info/misdiagn...

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From Prof. David Healy’s website: davidhealy.org/surrender/

Surrendered doctor

1. Accept that when it comes to the side effects of treatment the patient (or the in-laws) are likely to know best.

2. Accept that my job would be more interesting if I learned to co-ordinate the research efforts of my patients rather than continued to dictate to them.

3. Accept that patients continue to come to me not because I am good at my job but because society has made it impossible to get medicines except through people like me.

4. Accept that my actions are dictated by ghostwritten articles and inaccessible data mediated through guidelines that I haven’t the guts to stand up to.

5. Recognize that far from being founts of wisdom and compassion my colleagues and I can get incredibly nasty if questioned. I am an obstacle to work around more often than a source of support.

6. Medically Unexplained Symptoms point to limitations in current medical knowledge or perhaps my medical knowledge. The term is not a euphemism for hysteria.

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Oh how I’d love to stick that on the wall of my surgery!

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Every surgery, & every medical establishment!

I’ve thought of a few other places I could stick it when seeing arrogant doctors!

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My GP was gobsmacked when I told him I was getting my B12 on the internet. Until I explained that it doesn’t require a prescription in Germany (because it’s not harmful) and that I would be buying it from a pharmacy that has had a bricks and mortar shop for over 100 years. The German equivalent of boots.

He nearly had kittens when I told him that I was getting syringes and needles from Amazon!

Luckily we have a good relationship and he trusts me not to do anything totally stupid.

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Where do you get your b12 from please?

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Thank you :)

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Hi,

"being referred to a neurologist as these symptoms “can’t possibly be linked to b12”"

B12 deficiency can affect virtually every body system including nervous system and brain.

Is GP aware that B12 deficiency can lead to sub acute combined degeneration of the spinal cord?

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, access to PAS members only.

pernicious-anaemia-society.... See Page 2 of articles.

Blog post from Martyn Hooper's blog, mentions SACD

martynhooper.com/2010/09/21...

Are any of the symptoms that "can’t possibly be linked to b12" on these lists below?

pernicious-anaemia-society....

b12deficiency.info/signs-an...

Have you considered joining PAS (Pernicious Anaemia Society)?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

Support groups can be a useful source of info eg sympathetic GPs

Might be worth your GP joining PAS as well, it's free for GPs and other health professionals.

pernicious-anaemia-society....

"have other mental health problems such as depression etc."

I suspect that some of the mental health symptoms suffered by members of this forum are caused or made worse by the shocking way many on this forum have been treated.

B12 deficiency can cause many mental health symptoms. Martyn Hooper has referred to this on his blog ,including his own experiences.

martynhooper.com/2017/01/22...

b12deficiency.info/b12-and-...

All I can say is Dr Google saved me from descending into dementia,paralysis and mental health chaos.

I came across an article that linked symptoms I was suffering to B12 deficiency. I did further searches and had a light-bulb moment. Got hold of my health records and saw a previous diagnosis of b12 deficiency, looked at PAS website and could relate to experiences outlined on there. Got copies of Martyn Hooper's books and Sally Pacholok's and cried with recognition when I read the case histories they contained.

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies.

"and look to the people that the three monthly injections are working for."

When PAS tried to find PAS members who were fine on 3 monthly injections for a research project, think they found it hard to find enough.

ttps://www.martynhooper.com/2016/02/17/research-recruitment-finally-complete/

Perhaps your GP could contact Martyn Hooper, chair of PAS?

I gave my GPs a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and B12 Deficiency".

I am not medically trained.

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What a simply wonderful reply Sleepybunny ! 🥇for you !

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This forum saved my life 2 years ago. As for the "doctors" I find it difficult to comprehend how little they know after so many years spent in education. Do they give them "stupid pills" with their diplomas????

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Hi Mandymoos8

To my deafness I'm accustomed

And my dentures are just fine

I can cope with my bi-focals

But how I miss my mind.

I'm a 77 year old who's had P.A. for more than 46 years.

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Hi again,

Another link about B12 deficiency and psychiatric symptoms

stichtingb12tekort.nl/weten...

Link about writing letters to GPs if under treated for B12 deficiency with neuro symptoms

b12deficiency.info/b12-writ...

Lots of useful B12 info in above link.

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You could always do what I did and give your GP a copy of Martyn Hooper’s book.

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Bloody cheek! GP is an arrogant, uneducated twit.

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Well yes. Most of us may have been experiencing neuro psychiatric effects from B12 deficiency for years because the measurement range for deficiency was set too low for many people. I cringe looking back at my behaviors before my adequate treatment...

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I still struggle to understand when GP's are faced daily with similar symptoms which clearly follow a pattern, they refuse to accept there is a link and they just leave 1000,s of people to suffer a life of hell. Self injection has transformed my life. Mark

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Self injection has restored my mental function. How many more humans suffer this so needlessly?

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This is why I don't tell my GP I inject myself. Had my injection the other day and my 5 year old said to the nurse I have seen my mummy do this herself before 😂 I didn't react and the nurse didn't seem to notice.

It's such a cheek for your GP to say that. I have been injecting myself for months and my toes go numb if I stop along with other symptoms that apparently I must be imagining.

Because of forums like this I know more and I have been able to sort myself out. As lovely as my GP is he told me my folate was fine at 5 and these forums told me no it wasn't. I couldn't understand why I didn't feel better on injections. I started folic acid and started feeling better.

Maybe we are all better off not telling them unless it's absolutely necessary.

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At least one NHS site uses feeds from this platform so may be your GP should be raising their concerns with the person responsible for web information in the NHS.

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Print out this article - print.ispub.com/api/0/ispub... - and tell him he was right. Many of us here may well have suffered from megaloblastic madness caused by untreated vitamin B12 deficiency.

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Ha ha too true

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I think once you know that you can't do any damage/overdose with VB12 injections and they are very simple to administer (I have been self injecting for last 2 months) you realise that often the people to be wary of are the Doctors. They try and scare you off anything outside of their very limited understanding on these illnesses. I've received more good advice and information from this website than I could ever get from the Doctor.

When I initially saw her and I was feeling terrible my VB12 levels were 87 on a scale of 115 to 1000, she told me that wasn't low and I didn't really need treatment, although I had all the usual symptoms and the neurological ones. Following advice from people on here I finally got some treatment but I supplement the 'three monthly' offer of an injection with 1 every two to three days myself. I'm still a bit fatigued but far better than I was a few months ago.

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It is probably true to say that GPs are more likely to have depression than the general population : long hours, overworked, impossible deadlines, difficult decisions, perhaps dealing with death, disease, guilt, loneliness......

Contributing to this forum is, I think, actually a positive step away from depression. Seeking answers is a good thing. Helping others and giving them hope while you do this is a better thing. I wish GPs would recognise this and not feel threatened. In fact, I wish they would join in - we all could learn something from that. They might become more efficient with symptom recognition, for example, which would certainly cut down on the amount of tests and consultations, and streamline the process of getting access to any useful treatment.

Chronic fatigue syndrome, Irritable bowel syndrome etc are not diagnoses: syndromes are just sets of symptoms. Trying to treat (suppress?) these symptoms individually will never work. Does IBS make your hair fall out ?

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Well written Cherylclaire I Could not agree more!!

All the best

Melbourne-Girl 💜

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OMG Mandymoos8 that is unbelievable!!!!!!

This Dr sounds like one we would call “Functional “ tongue in cheek because they write that on patients notes when they don’t have a clue. Maybe this Dr is concerned that you have access to so many thousands of people around the world whose collective knowledge would be mind blowing!!!

One thing I have noticed on this forum is that people are so generous in sharing their experiences with you re this disease and they all still seem to have retained a sense of humour and are very nice,

I’m trying to remember was it you who thought that you have found your champion Dr? If it was she probably still is you will just learn there are certain things that you may not be able to talk to her about!!

It sounds like you are getting to be “on the ball” already with all of this,

Best wishes always xx

M.G. 💜

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Hmm.... such arrogance to think we're all so easily distracted and unable to understand all the research we read. - The phrase, 'Those whom the gods wish to destroy they first make mad' came to mind, then gaslighting ?

Being ignored and watching GPs and psychiatrists persuade my sister's family she was psychotic and not severely B12 deficient nearly drove me to the edge.......

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I work in mental health, and you wouldn't believe how many patients I have sent along to their GPs with what I suspect is B12 deficiency. I'm usually right :)

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