Been not right for a long time & fina... - Pernicious Anaemi...

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Been not right for a long time & finally getting some answers after blood tests.

19davo66 profile image
6 Replies

I have no thoracic nerve on right arm, been taking Lansoprazole for heartburn for years, worst toilet habits at time, waking up and being tired, family been think I have been drinking, taking excessive Loperamide for bowels & very 'ditzy' if I have to get up in the night.

Had a letller from hospital today saying I need vitamin B12 injects as Pernicious Anaemia & my Folic is 3.4?? I Googled & joined here.

What is up with me?

I am just 46, not been in good health for a while & it looks like I have just been diagnosed with this thing called PA.

Breathing is dire & I have to write things down - what happens next?

Have been at hospital for years only pushing this has got me these blood tests after a thoracic specialist noticed how much I sweated and struggled to remember my sypmtoms & could not get off the chair in waiting room as I was kind of tired!

There is more than one of me?

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6 Replies
mummytina profile image
mummytina

Hi sorry to hear youre not well but at last maybe they have found the reason. I was diagnosed with PA 4 months ago and I had to have a loading dose of B12 injections 1 every other day for two weeks then after 3 months they check to see whether your levels have risen, you will have to have these for life. PA means your body cannot absorb vitamin B12 which you need for everyday life.

Have they tested your thyroid because this runs in line with a thyroid problem. I have had an underactive thyroid for 18 years and have only recently got PA. You will also need iron supplements which your doctor should prescribe as your folate is low.

I would ask to have all your blood test result and then post them on here and we will try and help your decipher them. I know its a lot to take in im still trying to get my head round it but it will get better if not right away soon.

Stay strong.

Tina

sherbertj profile image
sherbertj in reply tomummytina

Hi there,

I have been taking having b12 injections every month,which have helped me but reading your last reply , about needing iron supplements for low folate,my doctor has never mentioned. Should i ask? It has taken me so long to get to this point and get some help.

Thank you

jai

19davo66 profile image
19davo66 in reply tomummytina

Thank you - means I can start to get my head round things.

I was always an early riser, but of late I wake up with a thick head, seem sleepy, not with it, sit with no enthusiasm no planning, hands & feet in agony!

Sorry for moaning - I sort of feel I have met someone on holiday from my home town & I am trying to catch up. Lol

Doctors Monday morning, I will talk about blood test results.

Thank you Tina, you have put a smile on my face.

David.

Hi ,

It took some 3-4 months for me to notice any improvements from the B12 injections..I even went back to GP saying you have this wrong, its doing nothing. But after the 3-4 months I realy did feel so much better it was bliss, so hope for you its just a matter of time before you will feel a lot better!

Yes I do remember being so terribly tired and so dizzy, weak leggs, brain in a fog, balance dismal, looking like I was drunk..But am just fine now, its taken time, and alterring my treatment to what is right for me, but I am realy fine now, so do not give up hope, just give it time and find out what makes you better..this can mean life long B12, folic acid etc in personal dosis...

You may need to go on folic acid 5 mg tablets for a few months to address a folate deficiency, or stay on it for life, in a reduced frequency etc. I found folc acid helped me a lot with my bowel problems, B12 needs folate and folate needs B12 to be metabolised, good iron storage (- ferritine) is also required for good blood production, besides B6 and other B vitamins.. Having the wrong acidety re stomach acid can mean you do not take up iron well, but one should only take iron supplements if required/ persribed.

I am absoluutly fine now, life is just good and so is my health..its just a matter of finding out what treatment is best per person I believe, both my girls are doing well and live a very normal life..I believe well treated PA is not a condition that hinders or lingers..so to speak!

But there are many that also have other issues with PA and or B12 def, and for them life is not as was..thyroid problems being common with PA etc.

Perhaps read up a bit on PA/B12 def, see:

patient.co.uk/doctor/Pernici ... ciency.htm

cks.nhs.uk/anaemia_b12_and_...

I hope this helps,

Kind regards,

Marre.

19davo66 profile image
19davo66 in reply to

Marre

Thank you for taking time to write.

I have just had my first B12 & have to go every other day for 2 weeks - I am reading up on PA & luckily I see a neurologist Monday, my Thoracic nerve died many years ago & I think that there is some connection.

I dread going to bed as when I awake, my feet are numb, and walking to the loo is awful. I have to keep electric blanket on all night as there is no heating in my bedroom.

Thank you for sharing about yourself, I hope you are doing well & happy.

David.

puary profile image
puary

you should stop taking lansoprazole as they are to reduce stomach acid. having low b12 and pa is caused by low stomach acid as well as not having the intrinsic factor. if you can stop eating too much acidic foods and eat more alkali foods like milk, cheese, eggs and poultry will reduce high stomach acid. also don't drink alcohol, if you smoke, try giving it up, these habits can also cause problems. I was given something for heartburn but it didn't really treat the problem after being found to have low b12 levels so now I am supplementing with a b complex vitamin with folic acid capsules which helps. it will probably take around 3 months to have good outcome.

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