Antibody test was normal...

[MissD1503]

So after collasping in the drs surgery last night i finally got to see the dr who said my B12 is very low but my antibody test was normal i am starting B12 jabs next week. does that mean i do not have PA or should i be having more tests? I have felt so strange after collapsing last night my eyes feel weird no energy at all and can't sleep as i feel wide awake my heart rate is between 89 and 101 & feeling breathless i have painfful pins and needles in my hands and feet even my face and neck has them. Its so scary i feel like im loosing the plot 😑😑

[Sleepybunny]

Hi,

This flowchart which your GP may not have seen, outlines when PA should be diagnosed in UK.

stichtingb12tekort.nl/weten...

I gave a copy to my GPs.

It is possible to have PA even if the antibody test (Intrinsic Factor Antibody) test is normal/negative as it's possible to have Antibody Negative Pernicious Anaemia.

My experience is that some UK GPs are not aware of Antibody Negative PA which is discusssed in BSH Cobalamin and Folate Guidelines.

I'd urge you to contact PAS (pernicious Anaemia Society).

They are helpful and sympathetic and a source of info on PA. May be worth joining as they are busy and may not have resources to help non-members.

Untreated or undertreated B12 deficiency can lead to permanent neuro problems including problems with spinal cord.

PAS members can access an article about SACD sub acute combined degeneration of the spinal cord . Some forum members have passed this on to GPs as an example of the consequences of lack of B12 treatment.

pernicious-anaemia-society.... see Symptoms section

SACD is mentioned in following links from PAS website and Martyn Hooper's blog.

pernicious-anaemia-society....

martynhooper.com/2010/09/21...

I've left a couple of detailed replies on your other thread.

I gave my GPs a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" which mentions Antibody Negative Pernicious Anaemia.

[MissD1503 in reply to Sleepybunny]

I already joined PAS thanks i will mention this to tbe dr.

[mauschen]

The sympoms you express can also come from non related B12 deficiency conditions.

While it is encouraging that you are being supplemented with B12 to correct your established deficiency, the underlying cause in my opinion should be sought. Did you get a loading dose of B12?

[MissD1503 in reply to mauschen]

I start my B12 course next week.

[clivealive Forum Support in reply to MissD1503]

Ask to have your Folate level checked if not already done

[MissD1503 in reply to clivealive]

I think it was done i need to get copies of my results to check which i will do next week 👍

[mauschen in reply to MissD1503]

How are you feeling now?

If I understand correctly, B12 deficiency has been attributed to your state of collapse but the Dr decided to wait before starting supplements. Are you having further investigations or other treatments in the interim?

[MissD1503 in reply to mauschen]

Hi

I'm not having any treament yet they were going to make me wait until next Thurs to see dr then it would of been week after before i started my jabs so the collapse in the surgery was a good thing as i will see the nurse for tbe jabs next week I'm not feeling too cracky at mo I'm exhausted and have chest pains heart is 99 at mo it won't go down pins and needles and headache. Gonna just relax all day see how i go 👍

[fbirder in reply to mauschen]

Symptoms of a B12 deficiency, plus very low B12 is a very strong suggestion that the underlying cause is a B12 deficiency. A good response to B12 injections would clinch it.

[Granny56 in reply to fbirder]

How low is very low? We don't have this information yet.

[Dewbuc in reply to mauschen]

I would agree that B12 should have been started immediately to prevent deterioration such as occurred to you, but it is also important that other causes of your collapse are ruled out. B12 can exist with other conditions.

[Dani82]

I'm so glad Iv seen your post I'm exactly the same and terrified! No one wants to listen! You have made me feel I'm not alone! Thank you so much! Although I'm sorry your going through this too! I often think shall I go to A and E as my heart is waking me every night! It's so frightening xx

[Granny56 in reply to Dani82]

Have you been to your GP, if so what did he/she say?

[Dani82 in reply to Granny56]

Getting me a 24 hrs heart monitor to record my heart. But they usually say anxiety! Do the b12 jabs fix all this?

[mauschen in reply to Dani82]

I am glad to hear you are getting the monitor, this might shed light on why you are running a bit fast. It's important to try and forget you have it on and have a normal day, that way you will get more realistic results.

I personally do not get an increase in pulse with my PA, not even back when symptoms were really bad. Hey ho, we are all different!

If anxiety is the main culprit, B12 injections won't help. Please try not to worry, afterall 99 beats per minute is still within "normal range", albeit not a rate you want to be running along at.

[Frances55 in reply to Dani82]

Hi Dani82... I've been si every other day for 10 weeks now since I was diagnosed with PA... I also had a fast heart rate that woke me in the night up to 110bpm...but have noticed a considerable difference the past couple of weeks... Just thought I'd mention it... Good luck 🤞 and all the best ☺.....

[Dani82 in reply to Frances55]

Thank you so much! Hopefully there is light at the end of the tunnel for me too xx

[Frances55 in reply to Dani82]

☺ ☺ ☺....

[MissD1503 in reply to Dani82]

I had this too, i really hope your ok i have had the nurse call me today i am starting my B12 jabs today i feel so relieved xx

[Gambit62 Administrator]

small correction - the IFA test is prone to false negatives - it can be done several times for an individual before it finally produces a positive test - not that it is only positive in half of the people with PA - its only produces a positive about 50% of the time when PA is present

[Granny56]

I agree, it is a valid assumption for fbirder to make. However, I am puzzled as to why doctors are waiting and not starting a loading dose regime immediately if the B12 is so low?

[fbirder in reply to Granny56]

Who can determine the reasoning behind some doctor's looney decisions.

[mauschen in reply to fbirder]

I would agree wholeheartedly with this sentiment 😀

[MissD1503 in reply to mauschen]

I have been called today to go straight to the dr's after work to start having my loading B12 jabs...i feel so relieved.

[mauschen in reply to MissD1503]

That's good news, let's hope it makes a difference soon. Please let us know how you get on and don't forget to top up all other deficiencies and ask if you need folic acid, it's really important.

[MissD1503]

Hi Eaoz I am getting all my results today when i go for my B12 jab my nephew works on reception & has printed them all off so i can see exactly what i have been tested for