Blood results

[Glitterbug83]

Bloods done august since had my loading shots doc says all other levels are fine any advice pls xx

[clivealive Forum Support]

Hi Glitterbug83 how long was it between the loading doses and the above test results?

[Glitterbug83 in reply to clivealive]

Hi these were done before my loading doses

[Foggyme Administrator]

Hi Ri83. It's a bit difficult to tell without the reference ranges that go,with the results (there the two figures in brackets after the result).

However, your folate looks on the low side. Did your GP prescribe any folate? Or suggest you take low dose supplements (400mcg) to bring the levels up (folate and B12 work together so you need good folate levels for,your body to utilise B12 properly). Also, as your body gets more B12 to process, more folate is used up, so,your folate levels are likely ot fall a little further.

About the serum B12 level before loading doses - wow, that's low.

If you have neurological symptoms, hope your GP has continued with the neurological regime of injections. That is, after the loading doses, injections every other day until no further improvement.

About the other results - old results (the ones before the loading doses - which I think these are) won't say much about the 'new' blood picture.

It would be better to look at new results for a FBC three to four months after injections have started and then compare these to the older results above. It takes red blood cells this long to repair and so doing this will enable you to see if the blood picture is improving - which it should be after that time.

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[Glitterbug83 in reply to Foggyme]

Hiya thanks for reply, nothing else was advised before during or after loading doses. Yes my results were before loading doses.... nothing in brackets next to results.

I had nothing since my loading doses 11/9 advised my next one will be Dec. ... my legs were aching so bad and tiered on (2/10) I called doc crying they gave me a injection felt good since but still advised me my next injection won't be till Dec. ... I will be fighting this at docs on Fri

[Foggyme Administrator in reply to Glitterbug83]

Hi Rhi83. Sorry, this may not be in time for your doctor appointment today but...

Your folate looks low. Folate and B12 work together so if your folate is low or deficient your body cannot utilise B12 properly. Might be worth asking your GP to look again at the folate results and perhaps prescribe some folic acid to raise your folate levels. Some people take 400mcg of folic acid daily as a maintenance dose and you could consider this too.

The fact that your symptoms are coming back before your next injection is due (and are then relieved by that injections) is a sign that you need more frequent B12 injections.

As discussed above, if you have neurological symptoms your GP should have prescribed injections every other day until no further improvement (after the loading doses). This is called the neurological regime of treatment - some GP’s are not aware of this.

If you do have neurological symptoms, suggest you discuss this with your GP again and try to get the more frequent injections (as per BNF and BSH guidelines - in the links below).

I’m going to paste some links below that contain more information about PA, B12 deficiency, diagnosis, treatment and management. Most of the links are only one page long and the longer document (the BSH guidelines) contains useful summary sections throughout - if you can’t face the whole thing. All the links contain information that you can use to help persuade your GP to treat you more appropriately, in accordance with the guidelines etc. - especially the BSH and BNF guidelines (perhaps,print and highlight the bits relevant to your case and share with your GP).

It has to be said that many people on the forum struggle when trying to get treatment for B12 deficiency - largely because some GP’s don’t understand it very well.

Try sharing evidence from the links in order to get more frequent injections. If you have any more trouble, put up a new post and folks here can advise further.

Good luck. Here’s the links:

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

bnf.nice.org.uk/drug/hydrox...

(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... in Haematology (BSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)

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

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 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 Deficiency and Intrinsic Factor – Can Be Negative and Still Have PA)

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

bloodjournal.org/content/bl... (Haematologist B12 Treatment Review March 2017 – Includes Advice No Reason to Advise Against Self-Injection/More Frequent B12 Injections)

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[Glitterbug83 in reply to Foggyme]

Thank you.... I explained all the above to my doctor she wasn't very interested and is redoing my bloods on Tues I said about my levels would be high but should be looking at my syptoms... I am seeking advice via a expert now who is giving me a written report to give them.