New here

[Chance15]

I folks new to this site,I'm also on the thyroid site.Just need some advice from you folks,recent blood test results

Serum folate 1.9ug/L..........3.9-26.8ug/L

Serum vitamin b12 193........197-771ng/L

Serum ferritin. 170......30-400ug/L

Many thanks folks.

[Foggyme Administrator]

Hi Buma. Hello and welcome.

Your blood results show that you have B12 deficency and folate deficency (my goodness, your folate is very low 😖).

Your GP should treat you for both the B12 deficiency and the folate deficiency.

Note: it's important that you don't take any form of B12 supplements before your GP has done all the necessary investigations/tests as this will skew any results and make it very difficult for you to get an appropriate diagnosis and treatment.

Many GPs are ill informed about the diagnosis and treatment of B12 deficiency. I'm going to give you some brief tips to start you off and then at the end of the reply I'll leave some links to information and guidelines that will give you more information. It's well worth trying to read this information before you see your GP, as knowing what he should be doing to help you may help you to get appropriate treatment.

So, some tips:

Many GPs only take notice of blood test results and failed to take account of symptoms that may be present. Some have been known to ignore B12 deficiency when the result is just under the reference range. This is not good enough. The full clinical picture should be assessed - including the presence of symptoms - and where these are present, then treatment should be commenced. It'd be a good idea to print the symptom list in the links below, highlight any you have, and take this along when you see your GP. Some people find that they have symtpoms that the didn't even know we're symptoms 😖.

Note: there are may cross-over symptoms between thyroid conditions and B12 deficiency (and other conditions) so it might be difficult to sort out what symptoms are due to which condition (I note you have thyroid issues). However, in the presence of a blood test that confirms B12 deficiency (which you have) B12 deficiency should not be ruled out on the assumption that thyroid is the cause of symptoms. May seem a strange thing to say, but this is what some GP's have been known to do.

In the presence of neurological symptoms - all the guidelines state that when neurological symptoms are present, treatment with B12 injections should begin immediately (even if serum B12 levels are in the normal reference range). Following six times loading doses given on alternate days B12 injections should be given every other day until no further improvement. This is called the neurological regime of treatment: many GPs have never heard of this, so if this applies to you you may have to present evidence to your GP in order to get appropriate treatment (evidence contained in the links below in case you need it).

B12 and folate work together so without sufficient levels of folate the body is unable to utilise be 12 properly, so both deficiencies must be treated.

Treatment with B12 injections should start 24 to 48 hours before the first dose of folate. In rare cases giving folate before vitamin B12 can result in neurological damage. Not many GPs know this.

It's also important that your GP does not try to treat the folate deficiency without also addressing the B12 deficiency. Treating a folate deficiency alone in the presence of low or deficient B12 can 'mask' a B12 deficiency and as a consequence, neurological damage can potentially occur. Again, not many GPs know this.

Your GP should want to investigate the cause of your B12 deficiency ( for instance, taking drugs that impede the absorption of B12, intestinal surgery, infection with helibactor pylori - a gastric bacterial infection), coeliac or Crohn's disease - to name just a few).

Pernicious anaemia is an autoimmune condition that causes B12 deficiency. Your GP should test IF antibodies. It's worth noting that this test returns 50% false negative results so even with a negative result PA cannot be ruled out. A positive result means that PA is definitely present. The pariatel cell antibody test (PCA) is no longer recommended as a diagnostic test for PA.

If you have a history of autoimmune disease in the family, it's likely that you could also develop an autoimmune condition... pernicious anaemia and Hashimoto's thyroiditis seem to be two of the prime culprits and often seem to go hand in hand.

FBC ( Full blood count): your GP will likely (should) do and FBC blood test to check for the presence of the large red blood cells (macrocytic) often associated with PA and\or B12 deficiency. Many are unaware that 30% of patients with B12 deficiency and neurological symptoms present without macrocytic anaemia. So, the absence of macrocytic anaemia is not a reason to withhold treatment for B12 deficiency. Sadly, some do.

Note about the tests: GPs often say test results are normal when they're not. Bumping along the bottom of the reference range (or indeed at the top) is often not good enough, especially for people with B12 deficiency. If you want to get copies of blood test results and post them in the forum (together with the reference ranges) we can help with interpretation.

So Buma... Just a few basic tips to get you started. I'm going to copy the links below with more information and guidelines. Please don't be daunted by the what looks like a lot of reading. Most of the documents are only one page long and the one longer document contains summaries throughout if you don't feel up to reading the whole thing.

If you have problems getting your GP to treat you, it may be useful to print out the documents, highlight the bits relevant to your case, and take them along to share with your GP. But here's hoping that you have a GP who understands B12 deficiency, goes through the appropriate diagnostic procedures, and then prescribes the appropriate treatment 😄.

If you have any more questions or have problems with your GP, please post again people here will be able to offer advice and support. Good luck. Here come the links:

LINKS TO INFORMATION AND GUIDELINES

b12researchgroup.wordpress.... (Serious Caution Note about the use of Oral and Sublingual B12 Supplements)

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

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

stichtingb12tekort.nl/weten... (BSH B12 Deficiency / PA Diagnostic Flowchart)

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

cks.nice.org.uk/anaemia-b12... (NICE Guidelines Treatment of B12 / Folate Deficiencies)

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

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

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

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

stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

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.... (B12 and Intrinsic Factor)

gov.uk/drug-safety-update/n... (B12 & Nitrous Oxide Contraindicated)

👍

[Chance15 in reply to Foggyme]

Thanks for ur reply.doctor as asked me for a repeat blood test b12 & folate which I did this morning.i don't understand why I as to do them again..I asked for a vitamin d blood test on the first blood tests but that got refused.i thought they they wud av wanted a vitamin d done but no.

[Foggyme Administrator in reply to Chance15]

Hi Buma. Yes, odd isn't it! GP's often won't accept blood tests done privately (why on earth not) and often insist on repeating their own tests...even when a proven deficency is present.

As to the vitamin D...well...I should just keep asking...people with B12 deficency / folate deficency often have low vitamin D - especially in the UK where sunlight is short in the winter months.

Hope your GP gets on with treating you folate and vitamin B 12 decency...put up a new post if you have any problems getting treatment...if you could also post your recent blows test results, together with reference ranges, then we can help with interpretation.

Good luck and take care x