Change Your Thinking.: Hi everyone... - Pernicious Anaemi...

Pernicious Anaemia Society

32,628 members23,990 posts

Change Your Thinking.

Varna1968 profile image
18 Replies

Hi everyone. Despite being diagnosed with PA. over 10 years ago. My B12 injections were stopped. After repeated attempts to convince my GP that I needed Vitamin B12 injections, without any success. I was left feeling despondent and totally abandoned. I chose to self inject. It was at this time I reset my way of thinking. I no longer have to worry about accessing B12 from the GP. My treatment is based purely on taking injections when my levels are low. This is my new beginning on the long road to recovery. I now feel completely reassured and my self confidence is returning.

I wrote the following about GP’S. in general.

If my GP. has a problem with me , then that is his problem.

So I leave it with him.

Otherwise his problem , will become my problem.

Also I feel sure that . We only realise how important

Self Confidence is . When we lose ours.

I wish you all well on your individual journeys.

Written by
Varna1968 profile image
Varna1968
To view profiles and participate in discussions please or .
Read more about...
18 Replies
Pickle500 profile image
Pickle500

It's for such cases as yours that we must change the law to be given access to injections as OTC medication asap. The law says Doctors must be responsible for injections, yet we cannot trust them to be.

If the system is broken, which it is, we must try other means and that nay include private healthcare. Sourcing injections from Germany is effectively that - private healthcare.

Needing to access private healthcare is a sign that the care you've been offered is inadequate.

Varna1968 profile image
Varna1968 in reply toPickle500

Hi Pickle500.

Your response is absolutely correct. I’m afraid convincing my GP to comply with the same conclusions is just impossible. The NHS is falling to pieces, caused by the intransigence with those in control. I’m afraid seeking private treatment is inevitable. So sad but true. Take Care….

WIZARD6787 profile image
WIZARD6787

What you have written resonates. The medical professionals that I personally deal with have one thing in common. They are all confident I am wrong even in the face of my improvement.

I do not know why they continue to fail and consider themselves a success and me a failure. I just know that they do fail in my treatment of B12 Deficiency is the constant.

Varna1968 profile image
Varna1968 in reply toWIZARD6787

Hi, Wizard.

I totally understand where you’re coming from. It seems GP’s have made a concerted effort on how to deal with PA patients. They are completely out of touch with their patients needs. Whilst they ensconce themselves in the misconception, if they can’t see it you haven’t got it. I wish you well.

WIZARD6787 profile image
WIZARD6787 in reply toVarna1968

I don't think they methodology is restricted to PA. I had a stone in my saliva gland 2 years ago and was lied to by two physicians. One of them made an error and sent an email to a nurse telling her to tell me that I had a large stone which I did not. The nurse forward the email to me so I have a record of his dishonesty. I am perfectly capable of filing a complaint. I do not want even worse treatment than I'm getting now. I can bet against honor in the medical field. I can't bet on it. I do not find that people in general are more or less honorable than in the past, rather it's more likely to be detected.

Ghound profile image
Ghound

Hi, So true about self confidence !After many years of nursing I was no longer overawed by doctors.

This stood me in good stead when I had to fight hard to get GPs to diagnose my PA.

I respect everyone who earns / deserves it, I no longer automatically respect someone just because they hold the title of 'doctor'.

So many doctors, especially during covid, lost my respect.

Until recent times, I wouldn't hesitate to address a GP by their title if I met them out and about because they saw themselves as a doctor first and foremost.

My retired GP still took an interest in our family.

Now medicine is just a job to many doctors.

That's fair enough, nobody should feel permanently 'on call' , but don't then expect me to acknowledge them as a doctor outwith the surgery, especially if they don't seem to care about their patients.

Varna1968 profile image
Varna1968 in reply toGhound

Hi Ghound.

At one time becoming a Doctor was a vocation. Now it appears to be just another occupation. One which allows themselves to dwell in the realms of misconceived arrogance. Whilst their patients suffer the consequences.

I wish you well on your journey.

Ghound profile image
Ghound in reply toVarna1968

So true ! Thanks and best wishes to you too x

Cobalt1312 profile image
Cobalt1312

Varna1968 I love what you say about "I have to leave his problem with him, or it becomes my problem." As someone who struggles with absorbing other people's energy and emotions, I often find that task very challenging and love how you are calling out the dynamic.

When already shouldering a life-threatening, chronic illness that won't ever go away or resolve, carrying a useless GP who refuses the necessary life-saving treatment for that illness, is the straw that breaks the camels back. Bravo to you!!! I commend your courage and insight - wishing you all the very best!!

Varna1968 profile image
Varna1968 in reply toCobalt1312

Hi Cobalt.

I am pleased by your comments, you have taken on board the fundamental point I was trying to convey. Living with a debilitating condition is difficult enough. We shouldn’t have to fight for the right to obtain the medication we need. No one is suffering by choice. The least we should expect is to be listened to, and be offered the appropriate treatment. Once we leave there problems behind we then have the option to begin our journey on the long road to recovery. I wish you well on your journey. Take Care…

Mandosin_76 profile image
Mandosin_76

Im so sorry guys that you have to struggle to get B12 injection. I can imagine the frastration. Fortunately i get my 10ml monthly, but i only inject 1m once mnthly.I was again diagnosed with RA which is an autoimmune disease, and i take methotrexate once weekly.

Guys please let's take care of our health.

Varna1968 profile image
Varna1968 in reply toMandosin_76

Hi Mandosin.

Thank you for your support and encouragement. The obstacles we have to overcome on our journey to wellness, leads us down many paths. Once we discover which treatment suits our individual needs. Then we can begin to regain our self confidence and face the future with hope and steadfastness.

Cobalt1312 profile image
Cobalt1312 in reply toVarna1968

So true!! I have such a history of self doubt and at points I literally wondered if I was 'crazy.'

"No one is suffering by choice. The least we should expect is to be listened to, and be offered the appropriate treatment. "

I was kind of shocked once I realized how much I had been struggling with PA symptoms for so long, after I got diagnosed and learned some about the disease. How much better I felt after starting injections was mind blowing. The disease truly is pernicious, and only when I started to feel so much better did I realize how much I had been declining and coping with out really being conscious of it happening.

It is actually very traumatic to have more and more symptoms develop over time that you can't understand, and we go looking for help from doctors because we trust them to help us with medical issues that we can't handle ourselves. Ideally, that is what they're supposed to do, the unfortunate reality for many of us is vastly different. It takes SO much courage to keep trying and reaching out for help. Good on us all!!

WIZARD6787 profile image
WIZARD6787

I find it very stressful to deal with the medical field. I find it to be a abusive relationship and the only recourse for me is to self treat to avoid the abuse of power. I have to deal with it for things I cannot self treat or afford to order tests myself.

I am in the USA.

I find it helpful to know the personal I am dealing with are in the lower 40% of the class except the Primary Care Provider who handled my treatment of B12 deficiency who are Registered Nurses and no a MD.

I am also well aware that being academically gifted is never all inclusive and to become a physician does not require many of the possible academic gifts. The most important one to become a physician is to be able to recall information studied. It does not require a grasp of logic, evaluation of complicated data, communication/listening skills, emotional maturity or even mental stability.

I find it helpful to as best I can put me first and not try to smarten them up to the reality of their incompetence so I can help others.

It is helpful to be aware I am not being singled out and most people are not treated in a way that is most beneficial.

I am aware that often rather than make a diagnosis a diagnosis is given based on what is justified by test results.

It is not possible to diagnosis clinically by symptoms if you discount symptoms not expected by test results.

The standard is not the best care possible rather what others are doing and not even following established guidelines.

As in all abusive relationships the abuser controls the narrative which is in the form of notes with absolutely no oversight other than you might be able to get the notes changed with great effort.

I have found it helpful to have worked with three people to try and get competent help from the medical field. Two were in the UK. One is an epidemiologist and was able to with the documentation given force the GP to follow the guidelines. The other who is brilliant failed to get competent treatment and is self treating. The other is not the sharpest tool in the shed and may be suffering from subacute combined degeneration of the spinal cord and is screwing up any chance of getting help so far.

I found it helpful as it brought home the difficulty.

I could make a reasoned argument that the medical staff I have had to deal with are on a sociopath/psychopath spectrum. I could make a case for a diagnosis of Nobel Cause Syndrome although many psychiatrists would fall under that diagnosis.

Varna1968 profile image
Varna1968 in reply toWIZARD6787

Hi .Wizard6787.

I have read and thought about what you’ve written. How you approach and conduct your own interactions with the medical profession, is clearly a matter for you to decide. This way , using your own intellectual capacity to form opinions as to whether of not you choose to follow the treatment they prescribe is your choice . The only thought I would add is , when all is said and done it is your mind and your body that is affected.

Therefore, taking into account your previous experiences, only you can decide what you do or don’t put into it.

I must add that I am by no means medically trained. My response is purely guided by what you have written.

I wish you well both now and the future.

WIZARD6787 profile image
WIZARD6787 in reply toVarna1968

Hey Varna1968,

Thank you for your reply. It is appreciated.

I was expressing/sharing/exploring my current relationship with those I am currently dealing with in the medical field.

I am very fortunate in that I do not need them for anything other than ordering tests. I know what tests are appropriate, it is a matter of attempting to utilize my insurance.

I am also fortunate that with my self treatment I am now almost completely pain free which was not the case at all when following medical advice.

The relationship is really an adversarial relationship. They want to check off their check boxes and I want to follow science and critical thinking which leads to healing.

Varna1968 profile image
Varna1968 in reply toWIZARD6787

Hi Wizard.

Whatever works for you , suggests you are doing the right thing.

I have always thought it’s much better to be a Shepherd than a Sheep.

Take Care , I wish you well on your journey.

WIZARD6787 profile image
WIZARD6787 in reply toVarna1968

The hard part is wading through the information and science to rationally decide what is more likely to work than the standard. Then there is the trial.

Not what you're looking for?

You may also like...

Some help please GP going to stop Injections after ten years due to high B12 in blood

My husband has been having B12 injections for about ten years now, we went to our GP due to my...

Have your doctor got a right to stop your B12 injection for 6 months with pernicious anaemia.

Hi everyone, I have had PA for the past 7 years and having my B12 injections every 10 weeks....
salsadancer profile image

Help please!!

I am desperately trying to get some advice for my son who is 30 this week and was diagnosed with ME...
Belleblue profile image

Thinking of self injecting b12, any advice?

Hi there, I'm new here, I was recommended this forum from a fellow person with M.E/cfs from...
blueivy_4 profile image

1st Haematologist Appt

Today I had my first haematology appointment. I wasn’t looking forward to it after reading some of...
JJ1314 profile image

Moderation team

See all
Gambit62 profile image
Gambit62Administrator
Foggyme profile image
FoggymeAdministrator
taka profile image
takaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.