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Could I please ask for your thoughts on this?

NWreck profile image
6 Replies

Hi, all...

I've been at death's door for some time and had a blood test at the GP a while back. I suspected thyroid issues, but it covered various other things as well and came back all clear. Due to being too dizzy, tired and generally defeated, I didn't bother traveling to get my full results, and instead opted for a test from Blue Horizon Medicals. That came back yesterday. The thyroid seems to be okay (though I'm no expert), but both B12 and folate were commented upon.

B12 - 159 pmol/l (insufficient, with deficient being <140)

Folate - 5.21 nmol/l (range 8.83 - 60.8)

Due to the fact that they didn't pick up on this in their initial blood test, I'm rather terrified that I'm going to be sent on my sweet way home with my appalling memory, dizziness, exhaustion and fast heart rate. Is this low enough for there to be no doubt that I need treatment, or will this be a fight?

James

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NWreck
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Gambit62 profile image
Gambit62Administrator

I'm sorry but it really is difficult to predict how a GP is going to react but you do need to go and see GP as a matter of urgency.

Take with you a list of symptoms and rough guide as to when they started - folate deficiency tends to come on quickly - B12 is much slower so if you have symptoms that you've just dismissed that have been around for years that could be an indicator.

pernicious-anaemia-society....

take the test results as well - GP may want to redo them but if there is a downward trend on the B12 or the B12 is consistent with the last test then they may be more sensible.

Also go armed with the following knowledge (from BCSH - British Council for Standards in Haematology) guidelines for treatment of cobalamin and folate deficiencies

a) serum B12 test will miss 25% of those who are B12 deficient if used as a single marker (and pick up 5% who aren't)

b) symptoms are important in diagnosing B12 deficiency - if there is a discrepancy between test results and symptoms then the symptoms should take precedence - particularly if there are neurological symptoms - and treatment should not be delayed as this increases the risk of permanent neurological problems

c) macrocytosis is a common symptom of B12 deficiency but isn't present in 25% of those presenting with B12 deficiency

d) treatment protocol where there are neurological issues is more aggressive - loading shots 3xweekly until symptoms stop improving followed by 8 weekly maintenance

onlinelibrary.wiley.com/doi...

you may not be able to use the link if you are not UK based ...and treatment protocols do vary from country to country.

NWreck profile image
NWreck in reply to Gambit62

Thanks for getting back to me so quickly, Gambit. I am in the UK, and will be off to see the GP within the hour. I'll be armed with my results; my symptoms; a list of general symptoms; and the recommendation of the doctor who looked over my results at BHM, but outside of that, I certainly don't know much of what I'm talking about at the moment. I just know that I haven't felt well for a fair chunk of my 29 years, and this may be why. Thanks again for your reply... we'll see what the GP says.

NWreck profile image
NWreck

Update:

I was completely disregarded and informed that I'm anxious. He suggested basic over-the-counter supplements. For those who know better than I: assuming my levels are what they are through dietary neglect as opposed to something more serious, will that take care of it, or am I in a situation that requires more robust action?

Cobalamin4Life profile image
Cobalamin4Life in reply to NWreck

I'd recommend taking more robust action by finding another GP as soon as possible. You need to be evaluated properly by a B12 deficiency literate doctor. If you have PA, oral supplements will not be adequate.

Gambit62 profile image
Gambit62Administrator in reply to NWreck

over counter should be okay for the folate deficiency - suppermarket tends to be cheaper for folic acid.

In regards of B12 suggest that you write to your GP, including reference to the guidelines and requesting that you are treated in accordance with the guidelines - copy to the practice manager and local PALS.

You could also try contacting the PAS directly - though you will probably need to be a member before they can provide you with anything beyond basic advice but they can intervene with GP in relation to incorrect treatment.

pernicious-anaemia-society....

you could also suggest that your GP takes a look at and signs up to alerts/journal from the PAS

pernicious-anaemia-society....

KimberinUS profile image
KimberinUS

My level was 169 pg/ml which is equivalent to 124 pmol/l in oct 2014. Doctor said to take a b100. So i did. I mean, she didnt seem concerned and she would have offered injections, which i wasnt even aware of, if i needed them, right?

Anyway, 16 horrible months later, in feb 2016, when i feel even worse, i get the exact same tests done and i was at 246 pg/ml, which is equivalent to 181 pmol/l. So YES, you can feel like you are at deaths door at your level.

IF, i didnt have an absorbtion problem, my number should have been way higher, since i was taking 50X the RDA. And eating meat daily.

You are on the right track, knowing this level is serious. Try, try, try, to get injections from your doctor.

If doctor wont give you injections,and your only option is suppliments, get a mulitivitamin with all the B's (they work together)but also take a b12 with at least 1000mcgs. You might want to take that several times a day initially, as in, for at least a month or forever depending on where your situation leads, as the supposed absorbtion rate, is 1% through passive absorbtion.

Dont forget about minerals, in your efforts to heal your body. I still felt exshauted, achy joints, anxious, ect., even with injections, until i started supplementing magnesium and potassium.

I hope you feel better soon.

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