Strange Results : Hi, I was diagnosed... - Pernicious Anaemi...

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Strange Results

DownAndDesperate profile image
3 Replies

Hi,

I was diagnosed with PA in 2013/14 and was given injections for a while but that stopped a good few years ago. I had tests done via Endo a while back and they said my levels were fine despite no injections/supplements. I had tests done in May 2023 and the active b12 came back as high. It showed up as red, presumably because it said it was >150 and the reference range was up to 150.

My thyroid antibodies that were previously high are now in range, I’m assuming due to taking LDN. So I’m wondering if the LDN could have lowered the antibodies that destroy IF and stop me from absorbing b12 to the point that I’m now absorbing it ok? I’m confused about the high results suggesting I’m no longer deficient. My results were 190ish with a 200 cut off for deficiency when I was first diagnosed. Results from the test below. Thanks 😊

Results:

CRP HS 3.71 mg/l (0-5)

Ferretin 63.9 ug/l (13-150)

Folate - serum 3.59 ug/l (>3.89)

Vitamin B12 -active >150 pmol/l (37.5-150)

Vitamin D 46 nmol/l (50-200)

TSH <0.005 mu/l (0.27 - 4.2)

Free T3 4.47 pmol/l (3.1 - 6.8)

Free Thyroxine 11.5 pmol/l (12- 22)

Thyroglobulin Antibodies 18 iu/ml (<115)

Thyroid Peroxidase Antibodies 32 iu/ml (<34)

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DownAndDesperate profile image
DownAndDesperate
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3 Replies
Sleepybunny profile image
Sleepybunny

Hi,

Welcome to the forum.

"I was diagnosed with PA in 2013/14 and was given injections for a while but that stopped a good few years ago. "

PA requires life long treatment. Why did the GP stop your injections?

Have you considered joining PAS (Pernicious Anaemia Society)?

pernicious-anaemia-society....

PAS membership is separate to membership of this forum.

pernicious-anaemia-society....

Lots of useful leaflets on PAS website.

pernicious-anaemia-society....

I can see that your folate is below range and I'm wondering if this is somehow impacting the B12 levels.

In someone with both B12 deficiency and folate deficiency, B12 treatment should be started first.

You might want to look into functional B12 deficiency, where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells. MMA, Homocysteine and Active B12 tests may help to diagnose this.

NICE published a new B12 deficiency guideline on March 6th 2024.

nice.org.uk/guidance/ng239

Try to find the local B12 deficiency guideline used by your ICB in England or Health Board in Scotland/Wales.

There may be other useful info in this thread below.

Help Needed! Have I got Pernicious Anaemia?

healthunlocked.com/pasoc/po...

I can't write more due to arm injury but wish you all the best in getting the help you need.

I'm not medically trained.

More B12 info in pinned posts on this forum.

DownAndDesperate profile image
DownAndDesperate in reply to Sleepybunny

Hi,

Thanks for your really helpful reply. Sorry for the long time in responding, I’m feeling really overwhelmed.

The injections weren’t helping and whenever I had them I had problems with insomnia.

I’ve joined PAS in the past and I’ve read Martyn Hooper’s books.

My folate was diagnosed as low after I was diagnosed with PA. I’m now on 5mg daily.

I’m not sure if I need to look into the functional b12 deficiency or not? It’s hard to tell whether symptoms are from b12 or thyroid or vit D deficiency. The results above were the active b12 results which I thought suggest my levels are ok? I don’t remember if I had PA antibodies or not but I did believe I had PA and they tested for celiac I remember.

I’ve read some of the link you posted but became overwhelmed again. Between this and my long list of other conditions I’m not really sure where to start.

Thank you for your help and I hope your arm injury is healing well.

Sleepybunny profile image
Sleepybunny in reply to DownAndDesperate

I'm sorry that you feel overwhelmed.

Do you have a supportive friend or family member who can read through the info with you?

If you're still a PAS member you could ring PAS members' helpline.

pernicious-anaemia-society....

Lots of helpful info/support on B12info.com website.

b12info.com/

Both B12 deficiency and folate deficiency can affect mental health.

Link about B12 deficiency and mental health

b12info.com/mental-health/

Might be worth starting a new thread with your question about functional B12 deficiency as you may get more responses. Posts on older threads sometimes get missed.

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