Update following GP appointment. 1 Month down the line.

[iStevie]

Hi all,

So as promised, I just wanted to give those who have supported me with advice, shared stories & tips etc an update on how I got on at my GP appointment this morning following up on my B12 & Folate deficiency.

To recap, 1 month ago Symptoms were very poor concentration levels, "brain fogg", tiredness all day, lack of evergy/motivation, depression/low-mood mainly. GP ordered bloods and levels were B12 160ng/L [180-1000] & Folate 2.9ng/ml [>4]. Initial advice from GP to eat animals, green veg and take a multi-vit. Repeat bloods in 3 months.

So, had my 1 month follow-up appointment with GP this morning. My Doctor is a very kind, caring, compassionate GP who really does want to help me I do believe that, but..... when it comes to the B12 & Folate levels, he's adamant that although he has considered B12 injections, and has not ruled them out, as my levels are in the 'Intermediate' zone he doesn't want to set me up for a lifetime of injections if he can avoid doing so. If my levels were below 150 then without question he would immediately start me on B12 injections as much as I need to feel better and then at regular intervals, and will consider doing the same if my levels have not improved despite making every effort to increase my intake of B12 & Folate naturally. If my symptoms change then a different position may be taken.

So to summarise, continue with B12 & Folic Acid supplementation and book in for a blood test in 2 months time, followed by an appointment with GP - but obviously to go back and see her sooner if any symptoms change/new symptoms develop.

So I guess lets wait and see if diet & supplementation have the desired effect.

Thanks again guys.

[clivealive Forum Support]

Hi iStevie With respect your "Doctor is a very kind, caring, compassionate GP" who really does not know what damage she might be doing you by delaying treatment.

False normal B12 results and the risk of neurological damage

(U.K. N.E.Q.A.S Haematics.org.uk

)

“In the event of any discordance between clinical findings of B12 deficiency and a normal B12 laboratory result, then treatment should not be delayed. Clinical findings might include possible pernicious anaemia or neuropathy including subacute combined degeneration of the cord. We recommend storing serum for further analysis including MMA, or holotranscobalamin and intrinsic factor antibody analysis, and treating the patient immediately with parenteral B12 treatment.”

[Gambit62 Administrator]

sorry Stevie but I find it really difficult to understand how your GP can say your results are borderline low when they are in fact low.

Really find it difficult to go with the 'not signing you up to a life-time of injections' - if you have an absorption problem - and that would seem to be the case from what you said about your diet on an earlier post - then you will need to find a non-dietary way of getting B12 into you and injections are the most efficient. Other alternatives are nasal sprays, sublinguals and skin patches but none of these are licensed for treatment in the UK - though the fact that they count as vitamin supplements means they are readily available. Most of your B12 is absorbed in the ileum 1% is absorbed outside so flooding the gut with B12 could help but you'd need to be eating 100x the amount of B12 rich food you were eating before in order for enough to get through. Raw liver was used as an early treatment but not very appetising and injections sound like a much better option :).

Realise that he thinks he's doing the best and he is caring but it really doesn't sound as if he fully understands what he is dealing with.

Have you tried suggesting to him that he looks at the PAS microsite for medics

pernicious-anaemia-society....

[Foggyme Administrator]

Hi iStevie. I agree wholeheartedly with clivealive and Gambit62 .

Your blood results already show B12 deficiency...so what is your GP waiting for.

The golden rule with B12 deficiency is...treat the symptoms...and you have many.

The problems with simply telling you to supplement with tablets is that you may absorb a little (enough to push your B12 levels to the very bottom of the range) - in which case your GP will then say - ah ha - now normal, no treatment needed. Which is nonsense.

As others have said, it does sound as if you have an absorption problem and, as such, you will never get enough B12 to make and keep you well (bumping along the bottom of the range is not good enough for anybody with B12 deficiency).

It would be a really good idea to print out the pinned posts, highlight anything that is relevant to your case - focus on getting treatment - and take it in to discuss with your GP.

He may be well meaning but he really has no understanding of B12 deficiency and, in particular, the impact that undertreatment can have on us deficients.

Good luck and please post again if you need further help 👍

[wedgewood]

I fail to understand that anyone can be " set up for a lifetime of B12 injections " This would only happen if the diagnosis was P. A. . Then it is 100% necessary . If you don't have P A, injections can be discontinued , when no longer needed !

[Sleepybunny]

Hi,

Untreated or inadequately treated B12 deficiency can lead to permanent neurological damage eg sub acute combined degeneration of the spinal cord. It's possible to have severe B12 deficiency symptoms with a b12 result that is within range.

b12deficiency.info/b12-writ...

ncbi.nlm.nih.gov/pubmed/191...

If I had accepted what GPs/consultants said years ago, I am convinced I would by now be showing dementia type symptoms and more severe neurological problems. Due to difficult experiences I lost trust in the NHS. I raised the issue of b12 deficiency several times, pointing out that I had had a confirmed B12 deficiency (not diet related) a few years ago.

I bitterly regret not finding out more about b12 deficiency at the time i had it diagnosed as I took their word for it that I'd be okay because my B12 levels rose after the measly set of 5 or 6 loading injections I had and then no further treatment.

Has your GP got any of the documents mentioned in the pinned posts or in one of your old threads? I gave my GPs a copy of the BCSH Cobalamin and Folate Guidelines and a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency"

b-s-h.org.uk/guidelines/ Click on "Diagnosis and Folate Deficiency"

There is a useful flowchart about three quarters through document.I've found a link in pinned posts to the flowchart. It outlines recommended UK diagnostic process for B12 deficiency.

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

I believe a caring GP would be wiling to read articles/documents/books that might help them with a patient.

Link to your old thread .

healthunlocked.com/pasoc/po....