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blood tests results

busterboy profile image
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Just seen my daughter's blood test results - any comments would be appreciated. Thank you.

B12: 272.5 - (145-637)

Folate: 7.1 - (4.8-18.7)

Ferritin: 58.1 - (13-150)

Told by GP fine but has symptoms to the contrary. Other blood results at a good level including D3 which has improved with supplementation for that and other Vitamins over some months at my suggestion after Blue Horizan results showed many deficiencies. Would greatly value input from folk on this forum. Thank you in advance.

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Gambit62 profile image
Gambit62Administrator

Was your daughter showing any signs of anaemia at all? It may be that the GP is one of the many who things that B12 deficiency means anaemia - no anaemia means no deficiency.

The results you have are certainly in the grey range where people do have symptoms but the levels in blood are still coming out as normal range - normal range is just based on a statistical formula but gives no guidance about individual variation.

UKNEQAS did have an alert up on the importance of looking at clinical presentation in interpreting the results of a B12 serum test but it appears to have disappeared.

I did find this bmj article - though rather old

bmj.com/rapid-response/2011...

and looking at a couple of incidences.

You could try looking through the pinned post on information about Pernicious Anaemia and B12 deficiency which should cover materials that cover the fact that B12 serum test needs to be interpreted in context of clinical presentation and can't just be taken as an absolute guide and try drawing them to the attention of the GP. There will also be a list of B12 symptoms so something to tick off to present information.

Folate is in normal range but isn't particularly great so could become depleted if you start B12 treatment.

Can't really comment on the ferritin - it's a protein that enables the body to use iron so would be involved in looking for an iron based anaemia - but a medic would need to look at a number of other indicators to draw any firm conclusions.

If your daughter had multiple vitamin deficiencies then that would be indicative of a general absorption problem

PAS-admin profile image
PAS-adminPartner

How old is she?

The B12 level is after taking extra vitamins? If so, how long for and how high dose B12?

and yes, see pinned post with links to info :)

busterboy profile image
busterboy in reply to PAS-admin

Vitamins for months which is why they are climbing and yes she does have an absorption problem in Ileum - my inheritance to her!!

PAS-admin profile image
PAS-adminPartner in reply to busterboy

ah then the B12 test doesn't say that much, kinda low with supps. Two choices then: take nothing, wait and re-test for official diagnosis (can take quite long) or get better supplements and try those. Ferritin is ok, folate as well. (although you'd expect that a bit higher as well with supps, but maybe it's just a normal multi?)

busterboy profile image
busterboy in reply to PAS-admin

Sorry - I am having a flare up today with hashi so forgot to say her GP said months ago that she had Pa but wanted to wait for 6 months and retest which is why I went the BH route as she was pretty bad. Re the supplements - she is on very good quality individual supplements as recommended by many on the Thyroid forum and although I have improved hers are still not optimum level to facilitate the absorption of B12. She will continue to supplement but I find her B12 levels far too low, it is recommended, I thought, it was better to have it 1000 level, oh this was not an active B12 test. I have given her Martyn's books and will remind her to check these out as I think she hasn't done so yet. Many thanks for your insights, I do appreciate your input this end.

PAS-admin profile image
PAS-adminPartner in reply to busterboy

She has PA but doesn't get injections??? Back to the GP asap and insist!

The supps might be good for other things but for B12 not. It should be much much higher by now. So get good sublinguals (1000mcg hydroxy of methyl) and give those. I believe that will help much better. Unless (or next to) you get injections, it's ridiculous she didn't get them. Re-test? For what? PA again? Positive is positive..it can only be fals positive just after a B12 injection, which she didn't get, so try and insist, go with her, get the doc some info. And consider becoming a member of the society, we could write the GP an official letter which could help (and does in enough cases)

Gambit62 profile image
Gambit62Administrator in reply to busterboy

Busterboy

The range you have given for B12 looks strange - could you double check and also provide the units. Different assay methods and machinery have different ranges and there are two different sets of units that can be used which would have very different ranges. The range above would result in 1000 being significantly above range ...

Haven't quite got my head around the two different sets of units and the conversion between the two, but it is going to have quite a significant impact on the figure that should be quoted as 'optimal'.

PAS-admin profile image
PAS-adminPartner in reply to Gambit62

Think it's pmol/L ..and also then 1000 is pretty optimal (on injections/supps) That's what we use on the mainland ;) 1000 pmol/l is good, which is in your most used units about 1370.

Gambit62 profile image
Gambit62Administrator in reply to PAS-admin

other units are pg/mL

sorry, but where does this figure come from - ie what is the basis for saying that it is the optimal figure probably seen it somewhere but not sure of the basis.

PAS-admin profile image
PAS-adminPartner in reply to Gambit62

Scientifically there's no optimal, this one comes from the experience of patients. Lots and lots of patients. But in truth? There is no figure because serum B12 gives no information about the efficiency of the treatment. There are people who feel great with 700 and there are people who feel best when they have >1400 (pmol) In the end numbers don't matter, how someone feels is all that does.

Gambit62 profile image
Gambit62Administrator in reply to PAS-admin

thanks for that clarification. I'm actually well above 1400 in order to feel good - off the scale if tests are done.

I just get a bit worried when I see people quoting figures that they are quoting averages and what applies to an individual could be quite different and you have confirmed that is what is happening.

PAS-admin profile image
PAS-adminPartner in reply to Gambit62

ah off the scale...65000 pmol is off the scale. Anything below 3500 I consider normal ;)

And yes, it's averages..let's not make the same mistakes as the docs with numbers. Never mind the numbers, look at the individual.

busterboy profile image
busterboy in reply to Gambit62

Contacted my daughter and got her to check the figures again with all the information and here they are.

B12: 272.5: PG/ml (145-637)

Hope this helps.

busterboy profile image
busterboy

She is in denial I think - doesn't want the injections regime but I persuaded her to let me give her one to day. I got no where with my GP health centre so went the self help route for all my conditions. Have had a real shock at the state of the NHS today. She had been using the B12 spray as recommended to me by Martyn Hooper which I think accounts for the rise however minimal. From what she said it would be useless going back and she is exhausted plus a lot of the usual symptoms. I believe she will get the same run around I got, nothing I said was listened to, on going symptoms ignored, low levels on blood tests fine and 3 monthly injections quite adequate despite me hardly able to walk. I won't tell you how Hypothyroidism and autoimmune fare if anything it is even worse. By the way I did send my cheque to join this forum a long time back so am assuming that is still valid or I hope so. Will tell her your take and maybe somebody unconnected will focus her and know it is not just Mum. Thanks again for your help.

On another tact - I have a small bottle of methylcobalimine 5mg exp 2017. I didn't do well on it but wondered if you knew of anybody who could make use of it. It cost me quite a bit from B12.org and it seems a shame to waste it. Let me know and I will post it off to whoever or perhaps you.

PAS-admin profile image
PAS-adminPartner

ah the spray..I'm not such a fan of the sprays. That one as well and you can see why. A good B12 supplement would have resulted in a B12 of at least 800 by now. Except the nasal sprays, there are one or two really good ones (possibly better than sublinguals). Get her to try the sublinguals, they generally work much better. Or tell her to email me ;)

Re the cheque: this forum is free and open to all. The society itself has members. If you want me to check if you are a member, then please send an email via the website.

Re the methyl: can't help you there, maybe someone on this forum?

Sleepybunny profile image
Sleepybunny

"GP said months ago that she had PA but wanted to wait for 6 months"

Rather shocked to hear that she has a diagnosis of PA but has not had treatment.

I wonder if her GP has seen page 29 in the "BCSH Cobalamin Guidelines". This page has a diagnosis flowchart showing the process a medic should follow with someone they suspect of having b12 deficiency.

With a confirmed diagnosis of PA, my understanding is that she should receive injections for life. Page 8 in BCSH Cobalamin Guidelines has details of the recommended UK B12 treatment based on info from BNF (British National Formulary) Chapter 9 Section 1.2

See 5th summary point in next link.

bmj.com/content/349/bmj.g5226

Unhappy with treatment?

b12deficiency.info/b12-writ...

nhs.uk/NHSEngland/complaint...

citizensadvice.org.uk/healt...

patients-association.org.uk/

hdapatientcaretrust.com/ A charity that can provide free second opinions on treatment and diagnosis.

Another B12 book

"Could It Be B12" by Sally Pacholok and JJ. Stuart. very comprehensive book about B12 deficiency.

Thread from Martyn Hooper's blog

martynhooper.com/2016/04/24...

I am not a medic just a patient who has struggled to get a diagnosis.

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