Help with p/a and ferritin ?

[Sea_cells]

hi,

I have been diagnosed with pernicious anaemia. I am 1 injection off finishing my loading phase .

I am also deficient in vitamin d3 and vitamin b9.

move started the vit d tablets and due to start vit b9 on Wednesday for 4 months after my last b12 before being moved to maintenance injections.

Does anyone know if there is a connection with P.A. and ferritin levels?

my iron is ok but ferritin high which I need repeat bloods for in a months time .

I’m still feeling exhausted, confused, my hands and feet are still going numb but the dizziness is on another level! I’m fed up of nearly falling over whilst standing/walking and no idea how I’m supposed to hold down a job standing at a till whilst I’m feeling like this😞

Any help is greatly appreciated.

[jade_s]

Hello and welcome to the forum!

People will often have low iron with pernicious anemia, due to low stomach acid. High ferritin on the other hand can point to inflammation, which can be caused by many things, such as poor vitamin status.

Do you have any labs to share? Please include the ranges. Sometimes our values are not optimal even though they fall in the "normal" range.

How much B9 did your doctor put you on?

I'm sorry you feel so bad. It is common with untreated / under-treated B12 deficiency. It sounds like you need continued loading doses, that is, every-other-day (EOD) injections until neurological symptoms resolve or stop improving. In fact, EOD injections is in the guidelines for treatment of PA with neurological involvement (numbness, confusion).

If I were you, I would go back to your doctor, together with a copy of the guidelines, and push for continued injections. The standard 6 loading doses are by far not sufficient for those with severe neurological symptoms. If they are not cooperative, come back here and we can help you. Many of us have resorted to self-injection due to undertreatment by our doctors.

You can find the information you need through these links

B12 info : b12deficiency.info/what-to-... -> see especially the section "Correct treatment - loading doses" . I'm not able to copy/paste it here but the relevant bit about NICE/BNF guidelines is explained there.

Pernicious Anemia Society : pernicious-anaemia-society....

Unfortunately there is no quick fix with B12 deficiency. It can take a while, but you can get there.

[Sea_cells in reply to jade_s]

hi Jade,

Thank you for the reply.

I don’t have any lab ranges I’m afraid but can try get them Tuesday when I got for my final loading dose.

They have me on vitamin d3 800unit until March the restart autumn through winter, folic acid 5mg daily for four months and b12 1mg .

Thank you for the links I will have a read up as I’m clueless where this journey is going to take me.

[jade_s in reply to Sea_cells]

Hi sea_cells you're welcome

You have a legal right to have your results, and on the thyroid uk group they tell people to ask the GP's receptionist for printouts of the results.

It will be good to see your Vit D results. If you're very deficient, as many of us are, 800iu may not be enough.

Likewise for iron. Iron levels that are low in range can also lead to symptoms like dizziness, even when it's within 'normal' levels and red blood cdll related values are ok.

Doctors think the whole B12 journey is simple. 6 loading doses then 3 monthly, problem solved. But many of the people who end up on this forum find that they cannot survive on such a low frequency.

Please let us know how it goes and whether they agree to continued loading doses, given that your neuro symptoms probably won't magically go away after your final loading dose.

You could check off all the neurological symptoms from this list that you still have and show it to your doctor: pernicious-anaemia-society....

[Sea_cells]

good afternoon All,

I’ve managed to get my results from my doctors,

Here goes:

serum vit d = 34 nmol/L

Serum folate = 3 ug/L

Serum b12 = 189 ng/L

Serum ferritin = 121 ug/L

IFA= negative but parietal cell autoantibodies is positive.

Serum gamma GT levels=41 iu/L

I think the lab ranges are the following in order to list above:

50.00-125.00nmol/L - serum vit D

3.9-20.00ug/L -folate

223-1132.00ng/L -b12

6.00-81.00ug/L -ferritin

7.00-32.00iu/L -Serum gamma GT

Hope that all makes sense to somebody here!

Thanks for any advice 😊