serum b12 2000

[Crawford1961]

Hi would anyone know why serum b12 would be 2000 when I have p a ? Dr has stopped my injections because of this

[fbirder]

If you have PA then I assume you are taking B12 supplements and/or having jabs. That's why your levels are highish. Your doctor is an idiot.

[clivealive Forum Support in reply to fbirder]

If you have PA you're on B12 injections for life

I've had it for over 43 years, I'm now 74 and would have been dead long ago without my monthly cytamen jabs.

Go back and tell your doctor what others here with more medical knowledge than I will tell you.

I hope he sees sense soon and wish you well for the future.

[deniseinmilden]

"Above 2000" is a magic number which means that due to supplementation your levels are off the scale of the machine that produces the results of the blood tests. Your body needs to be in this situation to repair the damage caused by low levels.

The ignorance is unbelievable!

Good luck in your battle to get the treatment you need - please fight hard for yourself so you don't get more damage.

Your treatment should be based on your symptoms - BCSH & government guidelines.

x

[Polaris]

Shocking lack of care by your GP Crawford - here is an extract from the BCSH guidelines to show your GP re. further testing of serum blood levels:

"Those with initial neurological deficit should receive Hydroxocobalamin 1000 u,g, i.m. every two month. No further testing for cobalamin levels is required."

Also:

cmim.org/pdf2014/funcion.ph...

The above latest BMJ research document is supported by many research papers and has a useful summary. It also tells GP that, once b12 treatment is started, the test results don't mean anything and 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".

[Holly10]

Hi, have a look at Martyn Hoopers site, martynhooper.com, covering this very question. He recommends that when people who have pa come up against an ignorant (my word not his) doctor they should tell them that because they are receiving adequate b12 and are displaying raised levels in blood tests, it could be said that they are no longer pa,BUT they will always have Autoimmune Metaplastic Atrophic Gastritis, and if they do not continue to receive sufficient b12 they will slip back into pa. his article is entitled 'I no longer have pernicious anaemia', have a look.

Holly

[Sleepybunny]

I'm very surprised your GP has stopped your injections when you have a confirmed diagnosis of PA. My understanding is that if you are diagnosed with PA you will need injections for life.

Have you contacted the PAS? They will probably be interested to hear from someone who has had their injections stopped. In some cases they are able to intervene. If you leave a message they will get back to you.

pernicious-anaemia-society.... 01656 769467

This link may be useful. It's about writing to your GP when you are not happy with your treatment.

b12deficiency.info/b12-writ...

patient.info/doctor/pernici...

I am aware that some patients have contacted their MP for help in the past when they have difficulty getting the correct treatment.

Has your GP explained why having levels of 2000 plus has led him/her to stop your injections?

My levels are probably 2000 plus. I had to resort to self treatment becuase I could not get treatment from NHS.

[Crawford1961]

Thanks for your replies 👍🏼 I will have to challenge dr on this !! The problem is I still always feel rubbish & have terrible neurological problems 😞 Was only getting injections every 12 weeks which is never enough, however recieved a call from dr surgery fri to say thyroid levels low & have to see dr Thursday so maybe why I'm still unwell !!

[Sleepybunny]

Is there someone supportive you can take with you to your next appt? Especially if it is someone who has read current articles/books etc about b12 deficiency.

I printed out the whole "BCSH Cobalamin and Folate Guidelines" and gave a copy to my GP.

[Crawford1961]

Not really 😞 Especially as all my friends & family think I put it on !! So would rather go alone might have to do as you did !!