B12 level 154 and GP says this is normal!

Does anyone know where i can order B12 injections in the uk. I feel awful my folate is low and GP is dismissive and uninterested . Please help?

[fbirder]

You need to get your GP to read the BCSH guidelines - bcshguidelines.com/document...

Here are some extracts from the summary:

"The clinical picture is the most important factor in assessing the significance of test results assessing cobalamin status since there is no ‘gold standard’ test to define deficiency."

"Definitive cut-off points to define clinical and subclinical deficiency states are not possible, given the variety of methodologies used and technical issues, and local reference ranges should be established."

"In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."

[Effort]

Guide from September 2015 nice.org.uk/advice/mib40/re...

[Sleepybunny]

Recent documents make it clear that patients who are symptomatic for B12 deficiency should be treated even if their B12 results are normal range.

Useful links

bmj.com/content/349/bmj.g5226

ukneqas-haematinics.org.uk/...

I found it helpful to talk to the PAS (Pernicious Anaemia Society. If you leave a message they will get back to you.

pernicious-anaemia-society....

01656 769467

b12deficiency.info/

b12d.org

martynhooper.com/

Books

Could It Be B12 by Sally Pacholok and JJ, Stuart

"What You Should Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Fbirder mentions the BCSH Cobalamin and Folate Guidelines. I printed out and gave a copy of these to my GP. I found page 29 a diagnosis flowchart useful.

In my area of the UK I was told that the NHS should be following the BCSH Guidelines.

There are regional guidelines on B12 deficiency management and they vary across the UK. Some of them have not been updated since the BSCH Cobalamin guidelines came out in 2014. A search on local NHS website or a Freedom of Information request may locate them.

[Sleepybunny]

I self treat but this was an absolute last resort when I had exhausted all possibilities within NHS. In my opinion self treating can make it extremely difficult to get a diagnosis with the NHS.

There are other blood tests which may help to establish whether or not a patient has a b12 deficiency. These include MMA, homocysteine and Active B12. Once a patient starts to supplement the results of these tests may be compromised. there is also a "blood smear" aka "blood film". B12 deficiency can cause shape changes in some blood cells. These tests are available privately if not available from GP.

I always get paper copies of all my blood tests as I learnt from experience that what a patient is told over the phone is not always what is on the copy. Its also useful to see trends over a year in my opinion.

Has your GP tested your ferritin and a FBC (Full Blood Count) as well as folate and B12? There can be useful clues on the FBC. I look at my MCV and MCH levels. High MCH and high MCV can indicate the possibility of a macrocytic anaemia. Low iron makes red blood cells smaller. Low B12 and/or low folate makes red blood cells larger. If a patient has both conditions, red blood cells may appear "normal" size and a Gp might miss both problems.

The library section on the PAS website has a summary of the BCSH cobalamin Guidelines.

I have read that it is possible to have severe B12 deficiency with normal serum (blood) levels.

If GP is dismissive, this link might be helpful

b12deficiency.info/b12-writ...

I looked at lists of B12 deficiency symptoms, ticked the ones i had and gave copies to Gps

b12deficiency.info/signs-an...

There's a symptoms list in library section of PAS website

pernicious-anaemia-society....

[fbirder]

"I have read that it is possible to have severe B12 deficiency with normal serum (blood) levels."

Here's an abstract about Functional B12 deficiency. pn.bmj.com/content/9/1/37.a...

In the paper itself they speculate about the reasons why this patient had all the symptoms of B12 deficiency, but had 'normal' levels of serum B12 (350 ng/L). It was only when levels of MMA were found to be very high did they start B12 injections that halted further degradation.

She was found to have low levels of TC2 (202 ng/L (402-930)) and they speculate that she may have had a mutation (776C>G) in the gene (TCN2) that codes for TC2. This is the protein that carries B12 into the cell. If the levels are low then not enough B12 gets where it needs to be.

I got the full copy of this paper because I have the same mutation. I'm awaiting the results of my holotranscobalamin (Active B12) test to see if that was low.

[Hidden]

Good news! Armed with the knowledge from this site and all you guys i booked into see another GP at my practice. Gave a full run down of symptoms plus higlighted that 154 is in fact low when looking at wider literature. Highlighted NICE etc

I also have low folate and low vit D. I start loading B12 injections on Monday. SO RELIEVED! This site and you guys are amazing and i couldnt have done it without you!

[GetTheJDIn in reply to Hidden]

Great news...well done !

[Sleepybunny]

Good news so well done...

Do you have any neurological symptoms?

b12deficiency.info/signs-an...

Symptoms list in library section PAS website

pernicious-anaemia-society....

The BNF (British National Formulary) treatment if you have B12 deficiency with neurological symptoms is more intensive than the treatment for B12 deficiency without neuro symptoms. Info in Chapter 9 section 1.2 BNF and also in "BCSH Cobalamin and Folate guidelines" All gps will have access to BNF but not all will have seen BSCH cobalamin guidelines.

I can't reproduce BNF as it is copyrighted but this link contains similar info in Management section.

patient.info/doctor/pernici...

[2Old]

PennyD,

Whyyyyyy, a dismissive doctor? I never heard of such a thing. (If you're here to hear me say that in my Foghorn Leghorn voice, you would be cracking up).

Make sure that you take other vitamins when you take your B12. D3, Magnesium, B2, B-complex, a good multivitamin, zinc and iron are ones that I take. Each time I added another to list, I felt a little better.

[sami0x in reply to 2Old]

Hi, I know this is an old post but what B Complex do you take? And is it "high strength"?