I got my results back for pernicious anemia! Looks like folate deficiency, but would really appreciate any comments

[Carrie234]

I finally got my blood test results back for pernicious anemia.

It looks like I don't have it, and that my problem is folate deficiency. And low reticulocyte count which would be caused by low folate I suppose.

My other results are all in range, though active B12 could maybe be higher I am thinking. Homocysteine is 9 but I heard optimal would be more around 7, which I hope would happen when I get my folate up.

My ferritin from another test is low at 43, range 10-410, which I'm working on increasing with heme iron. My D from another test is 60, range 60-180, and I've started supplementing that.

My symptoms are: not feeling well or feeling weak and lacking in energy, heart weak sometimes causing insomnia, diarrhea, get sore mouth/ulcers too easily when I bite inside of mouth by mistake, slight tingling, some hair loss. I think all these match with folate deficiency.

I'd really appreciate any comments on the results, such as values that are in range but not optimal and indicate something.

Many thanks.

Full blood count and differential:

White Blood Cell Count (WBC)

5.1 4.0-10.0 10*9/L

Red Blood Cell Count (RBC)

4.44 3.80-4.80 10*12/L

Haemoglobin (Hb)

139 120-150 g/L

Haematocrit (Hct)

0.40 0.3-0.46 L/L

Mean Cell Volume (MCV)

90 83-101 fl

Mean Cell Haemoglobin (MCH)

31.4 27.0-32.0 pg

Red Cell Distribution Width (RDW)

12.4 11.6-14.0 %

Platelets (Plt)

173 150-410 10*9/L

Neutrophils

3.4 2.0-7.0 10*9/L

Lymphocytes

1.3 1.0-3.0 10*9/L

Monocytes

0.3 0.2-1.0 10*9/L

Eosinophils

0.1 0.0-0.5 10*9/L

Basophils

0.1 0.0-0.1 10*9/L

Biochemistry:

Iron

19.2 5.83-34.5 μmol/L

UIBC

36.4 24.2-70.1 μmol/L

TIBC

55.6 40.8-76.6 μmol/L

Transferrin Saturation

34.5 15-45 %

Immunology:

Intrinsic factor antibody

1 [1] <7 U/mL

Reticulocyte count

LOW 38 50-100 10*9/L

Immunology:

Liver kidney microsomal antibody Negative

Smooth muscle antibody Negative

Mitochondrial antibody Negative

Gastric parietal cell antibody Negative

Reticulin Antibodies Negative

Mitochondrial (M2) antibody Negative

Ribosomal antibody Negative

Biochemistry:

Active Vitamin B12

76 [1] > 70 pmol/L

Serum Folate

LOW 3.62 3.89-26.80 ng/ml

Methylmalonic acid (Blood):

0.12 [1] < 0.29 umol/L

Homocysteine

9.3 4.4-13.6 μmol/L

[Narwhal10]

Hi Carrie234,

These are via Medichecks ? Which use different ranges and cut-offs from the NHS. Folate deficiency can mask B12 deficiency. The NHS won’t accept private tests. Lovely, you’re just throwing good money after bad.

You have thyroid disease, symptoms, folate, just pop along to see a private GP and ask for a trial of B12 injections. See how you physically respond. The reason I say this is because many of us have had years of being undiagnosed. It’s time to just cut to the chase.

🐳

[Carrie234 in reply to Narwhal10]

Hi Narwhal10, thank you!

They are from Blue Horizon so probably still not accepted, but the good thing is at least they were taken by a nurse at a Spire hospital then processed right away with centrifuging, right temperatures etc so they are accurate.

So I would ask for b12 injections on the basis of my symptoms (and expecting b12 to go down as folate goes up with supplementation)? As from what I understand the result of an active B12 of 76 isn't seen as deficient.

[Narwhal10 in reply to Carrie234]

Hi Carrie234,

You have a tendency to grasp onto this whole concept of accurate with temperature etc.

Years ago, women would walk into MY clinic, I’d stand up smiling to greet them, remind them of my name, offer a seat. Right, I’ve got your Blood Results back, they are arbitrary figures to me. Tell me how you feel ? I would quietly listen. May I look at you under a bit more light. May I see your hands ? As I gently touched them. Can you open your mouth for me please and poke out your tongue. Surreptitiously, I would inhale, I use the sense of smell too.

Within 10 minutes of your Blood Results taken by Blue Horizon, your White Blood Cell Count (WBC) is different, your Red Blood Cell Count is different, your MCV is different, your Transferrin Saturation is different. It’s a Snapshot. My hands were often sore from constant washing because of Infection Control. I was always very quiet when examining. One night shift, a patient’s visitor asked Don’t you have a machine for that ? With a straight face I simply said no.

A few years ago, I was on my way to meet friends, I looked to my right, I’d seen the colour drain from his face, his eyes start to roll back. I grabbed him by his jacket and shouted, Mate, we are going down. Twist roll on the floor. I had my arm under his neck to protect his head as he had a seizure. I was lying next to him. My mobile phone was on his chest as I spoke to 999. A couple of people offered help. They were given orders as there was no way the paramedics would find us. You, up there, torch phone ON, flag and wave. You, that way, torch phone ON, flag and wave. Handover to paramedics. Thanked helpers who were trembling.

My point is, yes, ask for b12 injections on the basis of your symptoms and NO FURTHER TESTING OF B12 once treatment has commenced. It is symptoms based. You expecting your B12 to go down once treatment has commenced equates to an SMS SERVICE ERROR 404: UNAUTHORISED.

Someone who did not know about not retesting for B12 once treatment had commenced took mine. They did not gain Informed Consent. So received a complaint with the law that they had broken. It is Battery. I currently have 20% on this machine.

😘

My Handprint in different colour paint.

[Carrie234 in reply to Narwhal10]

Thank you so much Narwhal10, yes it makes sense to go on symptoms above all.

It sounds like you gave the kind of individual attention and observation that patients really need, but sadly so often don't get. Thank you for doing that for people.

I only mentioned the test because I was going to go with medichecks originally and posted about it, but people kindly corrected me and told me how important it is for the sample to be processed right so I went with blue horizon instead. healthunlocked.com/pasoc/po...

Nice handprint, I like the colours 👍😘

Well, onwards and upwards from here I hope!

[FlipperTD]

Scientist's view. I'm not a medic.

Your FBC results are normal. The retic count comment is not helpful. Your MCV is normal. You are not anaemic. If you were folate deficient it would be reasonable to expect to see something in the fbc, but it's not there. The borderline low folate level is just that; borderline.

The important thing is 'treat the patient, not the numbers'. 'Reference Ranges' are typically 95% confidence limits. Which means that 95% of 'normals' whoever they might be, can lie outside the 95% range whilst still being 'normal'. Needless to say, if you measure more things you find more outliers.

Don't panic. Follows Narwhal10's advice!

[Carrie234 in reply to FlipperTD]

Thank you FlipperTD, that's very helpful.

So I don't need to be concerned about the low reticulocyte count at all then.

I thought I must be folate deficient from those numbers, so that's very helpful to hear I'm not anemic and my full blood count is fine, and my folate level is borderline not deficient.

I was planning to take folate supplements and try to get my folate level to 'optimal' which I was told would be around 14 with this range - I've just started them actually. Is this still a good idea? I'd take B12 sublinguals as well while doing this.

And look into B12 injections in the meantime.

[FlipperTD]

If your retic count was low, that might mean you weren't making red cells as fast as you were breaking them, but your Hb is good, your RDW is good, so nothing much is happening. Good, fresh, raw greens are a good source of folate, and as we don't store folate [unlike B12] then we rely on regular intake. Red Cell Folate levels [not done by every lab for reasons too tedious to elaborate, but MY lab offered them!] are probably a better indicator of 'folate health' but hardly. The best folate supplements come in green leafy things. The rabbits will agree with me on that. Money is better spent on them than private blood tests [in my opinion]. B12 injections are good, but take care if you go down this route. The first one should be supervised in case of anaphylaxis. Rare, but it can happen. However, what makes you think you need them? Oral B12 should work. A diet rich in B12 should work too.

Be safe, be healthy, and relax.

[Carrie234 in reply to FlipperTD]

Thank you FlipperTD! I didn't think I needed B12 injections, just that Narwhal10 said above I should ask for a trial of them. I've got some sublinguals so was starting on those.

I have quite a sensitive stomach, so though I have a healthy and unprocessed diet, the only thing it's a bit low on is folate actually. I had been having a lot of lentils in the 3 weeks before that blood test to try and get my folate up (around an extra 400mcg a day from the lentils), as I already knew my folate was low from monitor my health tests. So I don't know how much the lentils were working to raise levels, maybe 3 weeks is too early to see a change.

Something I could try is maybe a green smoothie in the morning with a good amount of green leaves in it. As you say, the rabbits recommend 😄

[FlipperTD in reply to Carrie234]

If you put the rabbit in the smoothie, that'll probably help with your B12... But I don't recommend that one!

[Hockey_player]

There is no test that confirms you DO NOT have PA. The Intrinsic Factor test has a very high false negative rate. You have so many symptoms of PA that it would be good to try loading doses of B12 injections to see if that helps.

[Carrie234 in reply to Hockey_player]

Thank you, that is very helpful.

I was wondering, for someone like me who hadn't taken any B12 supplements at all for years before taking the active B12 blood test, and the level is over 70 , could those B12 levels mean I can absorb B12 and therefore not have pernicious anemia? That's the thing I don't understand yet. Or can you have good B12 levels without supplementation, but still have pernicious anemia? I am new to this so eager to learn.

[Hockey_player in reply to Carrie234]

You have low reticulocytes. One cause of that can be PA. You also have a lot of symptoms that sounds like PA. Taking injections of B12 would do no harm (unless you have a very rare allergic reaction). If you feel better because of them, this might indicate you needed the B12. mountsinai.org/health-libra...

[Carrie234 in reply to Hockey_player]

Thank you very much, really appreciated. Above all it's the response of symptoms to B12, and it's helpful to know the low reticulocytes might show more than low folate.

[Hockey_player in reply to Carrie234]

It is recommended that you start B12 first then folate. nhsinform.scot/illnesses-an....

[Carrie234 in reply to Hockey_player]

Great thank you

[Hockey_player]

Here is one article that says yes: ncbi.nlm.nih.gov/pmc/articl...

[Carrie234 in reply to Hockey_player]

Much appreciated

[Sleepybunny]

Hi,

Active Vitamin B12

76 [1] > 70 pmol/L

A result of 76 doesn't seem that far above the cut off point of 70.

Can you get MMA and homocysteine tests done?

Link about MMA

labtestsonline.org.uk/tests...

Link about homocysteine

labtestsonline.org.uk/tests...

Have you had gastrin levels checked?

labtestsonline.org.uk/tests...

Thread about tests for PA/B12 deficiency

healthunlocked.com/pasoc/po...

Thread about Patient Safety, has links for those having difficult health experiences with PA/B12 deficiency.

healthunlocked.com/pasoc/po...

I'm not medically trained.

[Carrie234 in reply to Sleepybunny]

Hello Sleepybunny thank you for your help, yes it does seem low for active B12 and would go lower when I add folate I assume. MMA and homocysteine are in the results above (Methylmalonic acid (Blood): 0.12 [1] < 0.29 umol/L; Homocysteine: 9.3 4.4-13.6 μmol/L). I had Gastric parietal cell antibody tested (Negative), but I haven't had gastrin levels checked, maybe I should do that.