What’s wrong with me

[B12helpme]

Hi, new on here. I previously had low range b12 and my gp didn’t treat me. Saw a specialist for my M.E diagnosis who requested my gp treat me for b12 deficiency. So had injections for a few months. They stopped18 months ago. All symptoms have come back. Gp again won’t treat me. Checked levels and they were 584 in November and dropped to 350 2 weeks ago. I have had iron deficiency anaemia for 21 years, which had been put down to very heavy periods. But I’ve never had a diagnosis of PA. I have an appointment with a GP this morning and I need some advice as I really don’t know much about all this. Was tested for celiac by blood test and that came back fine. Any advise would be great. Thank you

[clivealive Forum Support]

Hi B12helpme with your levels at 350 (do you know the range <from - to>?) your doctor will say they are "normal" but unfortunately what is swimming around in your bloodstream isn't necessarily getting to where it is needed at cell level.

Your doctor should be treating your symptoms not just looking at the computer screen.

The British Society for Haematology guidelines say on the Diagnosis of B12 and Folate Deficiency "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".

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

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 re-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 is also important that your Folate level is monitored as this is essential to process the B12.

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.

Do you have any idea why you became B12 deficient in the first place?

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

.

[B12helpme in reply to clivealive]

Thank you so much for your reply. I am currently at the doctors surgery so I will see what he says xx

[Polaris]

Hello B12helpme

As you've probably already discovered, PA/B12 deficiency is very complex with no reliable test and very few doctors understand or have read the latest research, so here are some links that may help:

Martyn Hooper, Chairman of the PAS speaking in the House of Lords

martynhooper.com/2015/06/28...

"Many of the members of the Pernicious Anaemia Society were originally told that they had CFS/ME because their tests results came back showing no B12 Deficiency and No Intrinsic Factor Antibodies. The new guidelines state quite categorically that the current serum B12 test should be ignored if the patient has all or some of the symptoms of Pernicious Anaemia and the patient should be treated using replacement therapy injections of B12. Likewise, just because a patient’s blood work didn’t show any intrinsic factor antibodies doesn’t mean that he or she doesn’t have Pernicious Anaemia rather the patient could have negative antibody pernicious anaemia – NABPA.

We know that very few GPs have read the new guidelines so just how many people whose blood tests indicated nothing wrong were then told that their symptoms were due to CFS/ME? Probably many thousands..."

...........

In case your GP stopped injections because he thought your blood levels were high, this is the latest BMJ research document summary (full document behind a paywall but GP may be able to access it):

bmj.com/content/349/bmj.g5226

It states that there is NO reliable test and, (bottom of page 4 ' under, 'How is Response to treatment assessed' ), once b12 treatment is started, blood levels are not reflective of how effective the treatment is - it is the clinical condition of the patient that matters.

"Cobalamin and holotranscobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment, and retesting is not usually required."

The document also contains information regarding frequency of injections for neurological symptoms :'every other day until no further improvement (British National Formulary) - particularly important as, the more severe the symptoms, the longer it takes to recover, particularly if they're neurological - e.g. severe fatigue, as well as those listed by Clivealive.

Dutch link re. Importance of adequate treatment:

stichtingb12tekort.nl/surve...

"After a year :

The need for quick and correct treatment is emphasised further by the fact that after a year of treatment only 4 % of patients are fully recovered. Fortunately half of the patients have experienced a lot of improvement in their symptoms after a year of treatment but there are still a lot of patients with remaining symptoms, who could possibly have recovered if their treatment was started promptly and adequately."

.............

It's often a good idea to take someone with you for extra support so that you are taken seriously, although I realise this may not be possible at this short notice when your appointment is this morning.

Very best wishes for better treatment.......

[Gambit62 Administrator]

How did you get on?

Do you need to talk about some strategies to follow up to get proper treatment?

As your symptoms went when you were treated it does sound as if the problem is PA.

Unfortunately awareness of how to treat B12 well tends to be extremely low.

[B12helpme in reply to Gambit62]

Not very well. He said that my levels were in range and I don’t need anymore but they will keep an eye on it. I told him I am members of some Facebook groups that state very clearly that you continue with the injections for life. But he just fobbed me off. And I really don’t know enough about it to argue my case.

I would like some strategies to help me that would be great.

Thank you

[Polaris in reply to B12helpme]

I'm so sorry you've had this frustrating experience.......Unfortunately, your GP, like many of us on the forum have discovered, doesn't appear to understand that neurological symptoms need to be treated early and adequately 'until no further improvement' - as per British National Formulary - to prevent permanent damage, or that measuring serum after B12 treatment is not required as levels will inevitably rise.

From personal experience, some suggestions could be to:

1. Join the PA society and ask for their help in reinstating vital injections by explaining the complexity of PA/B12 to your GP (notes for professionals are also on PAS site.

2. Write to your GP, outlining all your neurological symptoms and quoting the above BMJ research document, as well as UKNEQAS, NICE, and BCSH recommendations for neurological symptoms. Then ask for a further appointment but, this time, taking someone close as suggested by Clivealive. This link gives some helpful suggestions :

b12deficiency.info/b12-writ...

Another helpful post by forum member ktwing :

healthunlocked.com/pasoc/po...

3. Self inject (although this may be daunting at first, many of us on the forum find this less stressful in the long run than battling for adequate treatment). Lots of help, support and tips from members as where to get supplies, etc.

[B12helpme in reply to Polaris]

Thank you so much for this. I will try drafting a letter to my gp to see if this helps at all. Really do appreciate your advice and guidance. Thank you

[Polaris in reply to B12helpme]

I'll be keeping my fingers crossed you are listened to and all turns out well. 🤞🤞