Bloods

[Pixielula]

Can anyone give me advice on these bloods, no reference ranges were given, I have rang my daughters Gp to get ranges but the receptionist isn't qualified to give me them. I am totally freaking out about my daughters test the doctor she saw today gave her iron tablets and said her B12 was fine

[taka Administrator]

Right... Sorry I got a bit delayed!

Ranges may be available somewhere (buried!) on your local health board website.

Ferritin: Very low. Good that she had been given iron tablets. This is very low and will probably be making her feel pretty rubbish all by itself.

B12: !!!!!! 131ng/L = "Intermediate". Wow, just wow! What the heck is low then? I'm shocked! 131ng/L is very low and she needs treatment ASAP. How the **insert swear word of your choice** is this "fine"?

As you have B12 deficiency yourself (I think?) so you probably have seen this before but I'll post it again anyway:

pernicious-anaemia-society....

See the flowcharts on pages 501 and 502 for what her GP should be doing.

Anti-Intrinsic Factor antibody test: to determine is she has PA. Not a great test as ~ 50% false negatives (ie ~50% of people with PA testing negative!) Best done prior to injections.

No neurological symptoms: 6 loading doses (alternate days) then 1 injection every 3 months

Neurological symptoms: loading doses (alternate days) until no further improvement (with a review at 3 weeks) then injections every 2 months.

stichtingb12tekort.nl/weten...

frankhollis.com/temp/Summar...

Also have a look at the pinned posts on the left (or at the bottom if you are on a phone).

She needs to go back to her GP (possibly another one in her practice?) and start injections as soon as she can. While she is there it may be a idea to ask for the ranges for her folate test as this needs to be well within range not dragging along the bottom too!

[Pixielula in reply to taka]

Hi taka...........thank you for your reply, I live in Somerset and my daughter is doing a PhD at Cardiff university. I know the references at my local surgery (170-240) but not where she is, I rang her surgery and asked for them but the receptionists told me they don't have the medical training so were unable to read the ranges out to me (honestly) I'm not sure how much medical training is needed to read a few numbers out just a few brain cells, but hey who am I to judge. I wasn't asking for the results just the ranges that are used. It took a breakdown, 5 miscarriages and a stroke before my B12 deficiency was picked up. I am not going to let my daughter go through the same....

[taka Administrator in reply to Pixielula]

I'm so sorry to hear of the troubles you had before getting a diagnosis.

Sounds like Cardiff's B12 ranges are indeed very low. Looks like the range is 130-900ng/L if it is still the same as it was in 2013. See the link below for a very upset posting on the B12 deficiency blog about it:

b12deficiency.info/blog/201...

(The NEQAS broken link in the middle of the page is to this: archive.is/hbPHE )

NICE guidelines: cks.nice.org.uk/anaemia-b12...

It mentions:

"In most people with vitamin B12 deficiency, the serum vitamin B12 level is below 150 picomol/L (approximately 200 nanograms/L). There is a large 'grey zone' between normal and abnormal levels and reference values (and units) may vary between laboratories. "

I'd tell her to go back to her GP / another GP in the practice with:

- the NICE and the BJH guidelines I linked to earlier/above with appropriate sections highlighted. Highlight any relevant bits.

- symptom list (on PAS or B12deficiency websites) with appropriate symptoms ticked

- info on sub acute degeneration of the spinal cord (info in members are of the PAS website or google a scientific journal about it). I'm not saying she actually has this but it may help to "remind" her GP of the potential risks of not treating her properly.

As well as the anti-IF antibody test , she could also ask for MMA and Homocysteine tests too. These may help to prove she is deficient metabolically, thought Homocysteine testing is affected by having hypothyroidism according to the BJH paper.

If she is still having problems please come back (or point her here!)

[Pixielula in reply to taka]

Gp has just rang my daughter after I rang the surgery, and there ranges are 130- ???she can't remember and didn't write it down as she was walking home, with an upper limit of 900. Gp said they will retest in 3months

[Sleepybunny]

Hi,

Have you and your daughter looked at the BSH Cobalamin and Folate guidelines? it's possible that your GP is unaware of these, they came out in 2014 and give recommendations on diagnosis and treatment of b12 deficiency. They mention treatment if b12 level is below 200ng. I gave a copy of these guidelines to my GPs.

b-s-h.org.uk/guidelines/ click on box that says "Diagnosis of b12 and Folate deficiency" should be on page 3 of listed guidelines

Flowchart below from BSH Cobalamin and Folate guidelines. Has her GP seen this?

stichtingb12tekort.nl/weten...

It makes it clear that anyone with low B12 or who has the symptoms of b12 deficiency with an in range result should have an IFA(Intrinsic Factor Antibody) test.

I also note that by the results for her b12, it mentions that treatment should be considered if there is other evidence of B12 deficiency eg symptoms

What symptoms does she have?

Have a look at these symptoms lists. I ticked all my symptoms on the PAS list and gave it to GPs. Otehr useful info about b12 on websites as well.

pernicious-anaemia-society.... click on Symptoms Checklist

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

What to do next?

b12deficiency.info/what-to-...

b12deficiency.info/b12-writ...

B12 books

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

"Could it Be B12" by Sally Pacholok and JJ, Stuart

[Pixielula in reply to Sleepybunny]

Hi sleepybunny when I click the link leads to info on thrombosis and haemophilia, am I doing something wrong

[Sleepybunny in reply to Pixielula]

Hi,

You need to scroll down to bottom of the page where there is a series of page numbers from 1 to 8 then click on page 3. Once you are on page 3 look for the box that says "Diagnosis of b12 and Folate Deficiency" and click on that.

[Pixielula in reply to Sleepybunny]

I have both books due to trying to find answers to my own deficiency, my daughter also has hashimotos hypothyroidism so symptoms are always grey, we had put her problems down to a high THS. Bad hair loss, anxiety weight gain low energy levels generally feeling low OCD she get overwhelmed easily, nothing drastic. Low energy levels but not the brain sucking fatigue that I get .

[Foggyme Administrator in reply to Pixielula]

Hi Pixieula. Hashimoto's and PA (and the B12 deficency it causes) often go hand in hand. They're both autoimmune conditions and once you have one autoimmune condition, others are likely to follow.

Has your daughter been tested for anti-IF antibodies? But note - if the tests positive, she definately has PA - if it negative it's only 50% accurate and she could still have PA).

Excuse me if you've already said...don't have time right now to look over your past posts.

👍

[Pixielula in reply to Foggyme]

No, she only did this one cause I had been nagging her, And we only found out the results today. I had intrinsic factor but mine came back negative, but they only did the one test.

[Foggyme Administrator in reply to Pixielula]

Ah ha...good idea to get it done...if it does prove positive, they'll have to treat her for B12 deficiency.

If negative, it just means there will be different arguments to make in a treatment request 😖

What they should do is consider anti-body negative PA - though most doctors seem to never have heard of this!

👍

[Pixielula in reply to Foggyme]

Most Drs don't seem to have heard of anything to do with b12 deficiency. He told her this morning that her b12 was "fine" then she sent me the photo of her bloods. I then rang surgery for the reference ranges and to ask why they were not treating her. The Dr rang her back this afternoon and told her "it was a very serious disease that needed life long treatment, so they were reluctant to start treatment unless she absolutely needed it"

####%%% I swore a lot at this remark. They are going to "keep a close eye on her" and re test in three months

[Foggyme Administrator in reply to Pixielula]

Pixieula. Think I'll join you in that ####%%%%%!!!!.

What on earth are they thinking of?

They are even ignoring their own lab advice printed on the blood results (intermediate, consider treatment if other evidence of deficiency e.g. Neurological symtpoms OR macrocytosis (bit her iron deficency aneamia will 'mask' maxrocytosis - as taka points out - and they should take that into consideration).

Does she have neurological symptoms?

Wonder if they've seen this B12 treatment alert which states that 'In the event of any discordance between clinical findings of B12 deficency and a normal B12 laboratory result, then treatment should not be delayed. Clinical findings might include possible pernicious anaemia or neuropathy including subacute combined degeneration of the spinal cord. We recommend storing serum for further analysis including MMA or holotranscobalamin [active B12] and intrinsic factor antibody analysis, and treating the patient immediately with parenteral B12 treatment'.

And hers wasn't normal...very low...what they call 'intermediate'.

Here's link to the actual alert:

onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert)

More information about subacute combined degeneration of the spinal cord (SCDSC) on the PAS website or, if not a member, can be found via Internet search.

Think I'd be ringing again and writing a stiff letter including the alert document and information about SCDSP - maybe ask the to confirm that she is not potentially being exposed to this? And perhaps they'd like be accountability if she develops it due to lack of treatme or u Dee treatment?

(Not suggesting she has this but it might sharpen their minds since many GP's are totally unaware of the neurological havoc that B12 deficency can wreak in the human body - and have never even heard of it.

So again *********

I can only image how you must feel...wait and see is really not good enough, is it. To put it mildly.

Post again if you need a any more help...or just want to vent...

Take very good care both 👍 X

[Pixielula]

Foggy and taka...... thanks for your answers, can you please explain to me how her iron dificiency anaemia would mask macrocytosis? Explain as if to a stupid person please

[helvella in reply to Pixielula]

Low B12 results in red blood cells that are larger than they should be.

Iron deficiency results in red blood cells that are smaller than they should be.

If both factors exists at the same time they can appear to cancel each other out - at least in terms of the average sizes of red blood cells.

However, they don't exactly cancel, what happens is that some cells will be larger than they should be, and others will be smaller. So the spread of red blood cells is greater than usual.

This is indicated by the Red blood cell Distribution Width (RDW). A higher than usual RDW should be a prompt to consider if there are two (or more) factors at play. I think the RDW is towards the top of the range.

[activelazy]

Hi Pixielula,

Iron deficiency brings MCV down and B12 deficiency takes it higher. So, if both conditions present, the MCV (blood cell size) may look normal on report.

[Sleepybunny]

Blood smear/Blood film

If both iron deficiency and B12 deficiency are suspected then it may be worth your daughter having a blood smear. This is also known as a blood film. A blood smear may show up both macrocytic (large) red blood cells and microcytic (small) red blood cells in someone who has both conditions.

labtestsonline.org.uk/under...

As far as I know a blood smear is not often done on NHS for those who have suspected low iron or low B12 but it can be ordered privately I think. I have in past offered to pay for blood tests that I thought GP would be reluctant to order.

If your daughter is a member of the PAS, there are two local PAS groups in Wales. Perhaps one of them is within reach of Cardiff. The local groups can be a source of useful info and support.

pernicious-anaemia-society....

[taka Administrator]

In short...

Iron deficiency anaemia = small red blood cells (microcytosis) ie small cell volume eg 70 or 71fL

B12 deficiency anaemia = big red blood cells (macrocytosis) ie large cell volume eg 101 or 102fL

MCV stands for mean cell volume ie it is a measure of the average cell volume.

Pretend there was only 4 cells and you knew their volumes:

Add them together: 70 + 71 + 101 + 102 = 344

To work out the MCV the total volume of all of them (344) is divided by the number of them (4):

344 divided by 4 = 86fL ie within normal range!

That said from the blood results above your daughter has a haemoglobin of 126g/L and a MCH of 28.9pg which (using my area's ranges as you don't have hers) would mean she's not anaemic irrespective of the MCV.

Have no idea what the normal ranges are for red cell distribution width are normall so that may or may not help.

[taka Administrator]

Ha ha I took too long eating my breakfast and getting ready for work and got beaten to the answer by lots of people! Good point Sleepybunny .

[Pixielula]

Tanks to you all, I don't know what I would do without you all x