Confused and humiliated

[Nicoleflower81]

I just went back to the doctors as it's been 3 weeks since my loading dose ended and I still have symptoms

Brain fog

Overwhelming tiredness

Hair loss

Weight loss

The doctor basically said 'what do you want me to do, keep looking for a cause?'

I explained all of my previous tests over the years endoscopy, nerve conduction tests and the fact my grandma had pernicious anaemia and asked if that was the cause of my B12 deficiency. He said categorically that I don't have pernicious anemia, my stomach problems are nothing to do with it and even if they were he has bypassed my stomach by injections and maybe I should consider it a mental health problem caused by excess stress

I left in tears, I feel utterly humiliated and even more confused. I am due a B12 top up in Nov, but why do I need B12 injecting if I don't have pernicious anaemia?

[clivealive Forum Support]

Hi Nicoleflower81 the thing about the loading doses is that if you have neurological symptoms they should "continue until there is no further improvement" It may be that your doctor is unaware of that or the N.I.C.E. guideline which "tell him" how to treat a B12/Folate deficiency.

Make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

I am not saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.

It would also pay you to ask to have your Folate tested.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

I'm not a medically trained person but I've had P.A. for over 45 years and I wish you well.

[Nicoleflower81 in reply to clivealive]

Thanks for your reply, I thought that the approach was only for people diagnosed with pernicious anaemia so I will include this guidance in the letter of complaint to the surgery

[Patjamber in reply to clivealive]

I am exactly the same as clivealive my mum had pernicious anemia and wasn't treated properly unfortunately I wasn't aware that she had it. My mum lost the use of her legs and lots of complications. I refuse to go down that road so fight for your rights. Take someone with you who can support you and who can also speak for you when you get upset. Good luck

[Dewbuc in reply to Patjamber]

My grandmother was irreversibly paralysed from the waist down before she was diagnosed so I too am determined to be heard by my GP. Even as a doctor myself that's quite a fight!

"Nil bastardum carborundum". Don't let the B...... grind you down!

[Nicoleflower81]

Thank you for your help 😊

[wedgewood]

Definitely PA can have a genetic cause . Your GP should know that . I have PA , and when I went to see a professor of gastroenterology , he told me that PA patients have low or no stomach acid and that is what leads to tummy problems ( but not until he had prescribed some useless pharmaceutical drug , and I insisted on a test for stomach acid which he said was not available . There is a simple test you can do yourself with water and bicarbonate of soda ( google it ) Don't tell your doctor or he/she will jeer at you , and make you feel very small. You can find natural methods to help a low/no acid stomach ( google it ) The pareital cells which provide the Intrinsic Factor necessary for absorption of B12 also supply stomach acid needed for absorption of all vitamins and minerals . This function is disrupted by the antibodies that PA patients produce . ( it's an autoimmune condition)

My answer is not great , but I wanted you to know that there is a way out of this , and you will regain your health

Very best wishes .

[Nicoleflower81]

Quick update after today's awful GP appointment....I mulled it over for a few hours, and then I got ANGRY. I was questioning my own sanity, I mean it was the blood test that showed I was deficient so how is it now psychological?.....

I called my GP to ask for the complaints procedure and within 10 minutes the practice manager called me back, he listened but couldn't clinically advise so 5 minutes later the clinical partner called me. He spent 45 minutes listening to me and thankfully understood what I was saying. At no point did I go to the GP s this morning wanting to come away with a diagnosis of PA, I just wanted to know why I was deficient, why the loading dose hasn't made me feel significantly better (as expected) and what were the next steps.

I now have to be retested for intrinsic factor, a further endoscopy with biopsy (yum) and a four letter test I can't remember! So not a victory but feel slightly better that I didn't take being fobbed off lying down.

I will post again once further details known.

Thanks again for all your advise and support ❤️

[Dewbuc in reply to Nicoleflower81]

Sounds like a result! Brilliant! I hope you'll soon be getting optimal treatment and feeling much better.

[SusanLMckinney]

If you do not have pernicious anemia, you probably don't need injections, but with that said. Sometimes the doctors do not do the proper tests for it. It is possible now if you are on a course of B12 you may not be low, but nerve damage takes a long long time to heal, but keep on your B12 and you should keep seeing improvement although it will be slow. If you cannot get a doctor to give you shots at least once a month, go to the pharmacy and get sublingual 5000 strength and take as instructed.

[Nicoleflower81 in reply to SusanLMckinney]

Hi, thanks for info. By sublingual do you mean injections? If so do pharmacies in the U.K. do this?

[Nicoleflower81 in reply to Nicoleflower81]

Ignore me, I just googled it.

[margareta12321]

I can empathise with you as had terrible experience also.Seems many GPs think your undermining them if you dare to question treatment.

[Nicoleflower81 in reply to margareta12321]

It's really worrying how many bad experiences people have with GP's when they have B12 problems. I've never had cause for complaint until recently but I was really shocked to be treated like I was imagining all the symptoms I was experiencing. I hope you get the treatment you are entitled to x