so angry

[Lucieb01]

I spoke to a gp from my practice today, regarding my bh results done 9th jan 17, whi ch are b12 203 that has come down from 398 in 4weeks she told me they don't treat until under 200 and I explained my symptomsbut no change she told me that I can buy otc vits, also my serum folate is 4.94 range 8.83-60.8 and was told no treatment until it is 2 is it fair to say that it maybe even lower by now, when I sleep it can be 19-22hrs which is not right plz what should I do should I buy my own vits hope this makes sense as I feel I am thinking in chiberish

[Gambit62 Administrator]

suggest, particularly if you have neurological symptoms, that you write to your GP using the information from the pinned posts to point out that B12 deficiency is a serious condition - that 30% of people present with neurological symptoms before presenting with any form of macrocytosis and as some of your blood results in early posts imply that you may have an iron absorption problem that is going to act in the opposite direction and mask any macrocytosis. Quote guidelines on treatment - particularly if you are based in the UK - and that UKNEQAS have an alert out that highlights the need to evaluate serum B12 test in the context of symptoms.

Makes me pretty mad as well.

[Foggyme Administrator]

Hi Lucieb01. Yes, I agree with Gambit62 ...makes me mad too...your GP is being ridiculous.

Here's a link to the UKNEQAS B12 Alert that Gambit mentioned - definately one to print and show your GP:

onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert: Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord)

.

Here are the BSH treatment guidelines that your GP should be following, followed by a link to B12 treatment regimes as per the BNF (one for those with no neurological symtpoms and the second - more intensive regime - for those who do have neurological symptoms:

onlinelibrary.wiley.com/doi... (British Society Haematology (BSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)

evidence.nhs.uk/formulary/b... (BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

Just in case you want to check neurological symptoms:

pernicious-anaemia-society.... (PAS Symptom Checklist)

Your GP obviously knows little about B12 deficiency, including the fact that the symptoms of deficieny can be present even if B12 levels are within the reference range and no evidence of macrocytosis is evidenced on the blood results. Here's something that will give you more information about that:

stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)

stichtingb12tekort.nl/weten... (Problems with Serum B12 Test)

And here's something in case your GP gives you injections and then tries to stop treatment in the mistaken assumption that you levels have come up - so you no longer need treatment. That would be wrong.

stichtingb12tekort.nl/weten... (Testing B12 During Treatment)

Your GP has some very odd notions about B12 deficiency - here's something that might help you to 'debunk' those notions:

stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to Know Before Seeing GP)

About the folate: your blood results show that you are clearly deficient in folate. This should be treated with high dose folic acid supplements. It's usual to give 5mg tablets (prescription only). Only offering treatment when levels drop down to two is, quite frankly, ridiculous. Here's why...

Folate and B12 work together so if folate is low, the body is unable to utilise B12 properly. But note - folate supplements should not be started until 24 hours after the first B12 injection. If folate is given first, this can potentially cause neurological damage. So your GP should not give folate unless the B12 deficency is addressed first.

Buying over the counter vitamins is not a good idea. All this will do is raise your B12 levels slightly, but not enough to treat your deficency appropriately. And if it puts your levels up a little it will be even more difficult to persuade your GP (or another GP) that you need B12 injections. And what you need is proper treatment, with injections.

If you have neurological symptoms the only recommended treatment is B12 injections. And if you have a confirmed diagnosis of PA, the only recommended treatment is - B12 injections. And the treatment for B12 deficiency is - B12 injections.

And over the counter folic acid (to get your folate levels up) will not give a sufficiently high dose.

Just wondering...is there another GP in the practice who you can see?

Suggest you print out the links above, highlight anything that is relevant to your case and go back to your GP to present 'evidence' as to why you should be treated. If you can take someone with you that would be a good idea since doctors are often more attentive and less hostile if a witness is present. Sad. Bad. But true.

If that person can read your evidence and be prepared to step in and support you, if necessary, even better.

I'm constantly staggered by the lack of knowledge GP's have and it's always very difficult trying to deal with this when you feel so very ill.

Please do go back to your GP, or to another GP if that's possible.

If you try this and you still can't get treatment, post again and can suggest other things you can try.

Good luck, be brave and keep strong and keep,in mind that your GP is wrong, not you. Let's us know how you get one.

Take care 😄X

[Hidden]

Makes you wonder why they bother having a "normal range" if doctors just choose to ignore it, with absolutely no sound reasoning. Makes me so angry.

But Gambit62 and Foggyme have given you the best advice. Print it all out, write a short letter to your GP and send it to them.

[Joey4]

Hello, this is the first time I have posted but after reading the messages I wanted to reply.

Lucieb01, yes be brave, keep strong and question the GP. I asked for my B12 to be tested 5 years ago because of my symptoms and family history of PA but was told it was fine (it was 178). A few years later and having deteriorated further (long story), by chance, I asked again as I was being tested for Gluten Intolerance and was already deficient in Vitamin D; my B12 was just over 100 (Serum Folate also low). Where I live the cut off for treatment is below 130. Had I had access to the excellent advise Gambit62 and Foggyme have given you, I would have questioned the GP more 5 years ago. Having the injections has really improved my quality of life and although not all my neurological problems have gone, the difference is significant (at present I have an injection once a month although I start to need another after two weeks!)

I had my son tested recently as he was showing symptoms and again was told he was fine. This time however, I got a copy of his bloods. His B12 is 183 and Serum Folate 2.5. Needless to say, I have made an appointment with the GP to discuss. We can be strong together!

Best wishes and good luck x

[Lucieb01 in reply to Joey4]

Hi joey4

hope everything go's well for you and your son

[Lucieb01 in reply to Joey4]

hope everything go's well for you and your son

[Foggyme Administrator in reply to Joey4]

Hi Joey4. Really pleased that your quality of life is improving - finally - but so sorry you had to go through what many here experience - ignorance, arrogance, and sometimes - downright hostility.

Good luck making your sons case...put up a post if you need any he,p...lots of lovely folk here to,pop along and help.

Take care both 👍

[Joey4]

Thank you, you too 😊

[Ryaan]

You definitely need treatment B12 and Folate. Your GP is ridiculous.

That's how I felt sleeping that much when b12 and low folate.

Currently being treated, makes a HUGE difference.

Low B12 is no joke.

You need to do something, or change GP.

GP's are not well informed about b12. Very common fact.

Wish you well.