Blood tests with PA

[SarahFerguson]

How many of you have regular blood tests- how many of you also take iron tablets?

[clivealive Forum Support]

Tests for what SarahFerguson ?

I have lots of blood tests taken, but then I'm diabetic, have prostate problems, chronic D deficiency and have had P.A. for 45 years and I've taken iron tablets every day for more years than I can remember and I'm still "clivealive" at 75

[SarahFerguson in reply to clivealive]

I'm not sure if PA suffers should have routine bloods taken? As for Iron tablets - when the nurse did my last jab, she question why I was taking iron tablets cause the B12 jabs are my iron replacement!

[SarahFerguson in reply to SarahFerguson]

I'm not taking the iron tablets now cause of what was said, feeling shite now!

[Gambit62 Administrator in reply to SarahFerguson]

nurse was a laugh out loud moment

B12 doesn't replace your iron - the two aren't closely enough related chemically speaking - pretty sure that the B12 molecule doesn't actually contain any iron.

B12 and iron deficiencies do commonly occur together as absorption problems in the gut mean the body doesn't efficeintly extract minerals from its food.

[helvella in reply to Gambit62]

100% right, Gambit62.

The molecular formula for hydroxocobalamin is:

C62H90CoN13O15P

The only metallic atom in there is the single cobalt.

pubchem.ncbi.nlm.nih.gov/co...

The nurse probably thinks we get lead poisoning from pencils. If she thinks at all...

[clivealive Forum Support]

I think your nurse is talking rubbish. I'm permanently taking iron because I had two thirds of my stomach removed 57 years ago which in turn led to my P.A.

I'm not a medically qualified person but there are others on here who be better able to explain such as Gambit62 Foggyme & fbirder

[taka Administrator]

I'd agree with clivealive . Your nurse is talking rubbish! Your iron levels and whether you need to take iron tablets is a separate issue to your B12 injections. B12 injections do NOT replace iron replacement therapies! I'd speak to your GP about it if they prescribed the tablets and point out the nurse's misinformation!

I think a blood test a month or 2 after loading doses is normal to check your B12 levels aren't too low but there is little point B12 being tested there after - it should be high due to the injections! My B12 was lower than my GP expected at 8 weeks after loading doses so they've retested it several times since (also when having bloods done to check other things too). It has measured lower than they expect it to be every time so I'm now on 2 monthly injections.

[SarahFerguson in reply to taka]

Thank you, I shall go armed with that info when I see GP on 25th x

[Chrissie40]

Hi there, I'm a newbie and in need of some information.

Can I ask what peoples B12 levels are before they started treatment with injections and what the main symptoms were?

I am a 40 yr mother of 2 and have had chronic fatigue and depression for some time. (depression for 4 yrs)

I have had blood tests which have regularly shown my iron is low and have been on iron tablets on and off for the past 6 years and recently the last 6 months 200mg. Recently my doctor noted my B12 was a little low - she described as border line but not low enough for treatment - level was 197 i think.

I have been advised to take B12 supplements 1000ug a day and have been for 3 months and was retested and my levels are now at 300. I still feel poo...

I have been tested for the immunity thingy in my intestines and all im told is i have tested positive for 1 and negative for the other .... And my doctor spoke to a Hemoetologist who stated that they should hold off treating me with the injections (my doctor stated that she didn't want to start me off on the injections as it would mean having 1 every 3 months for the rest of my life) However I still feel poo...

I am thinking of calling my doctor and asking for the injections anyway. The B12 tablets have taken the edge off my fatigue but I still need a nap in the day otherwise I'm shattered... This leads me to think the B12 could very likely be the cause of my fatigue...

Opinions and advice welcomed...

Thanks Chrissie

[SarahFerguson in reply to Chrissie40]

Similar thing happened to me 3 years ago, prior to diagnoses I was on iron tabs for 2/3years on and off. I did some research and asked GP to do blood test and check instrinsic factor. If this is positive result you will need B12 jabs as you won't be able to absorb iron (no matter what you eat) I'm 47 now but was dignosed 3 yrs ago. Have you any family history of stomach complaints?

[Foggyme Administrator in reply to Chrissie40]

Hi Chrisse40. Hello and welcome. Can I suggest that you copy and paste your reply into a new post of it own?

If it's in this post, only the people who look at this particular post will see it. But if you have a post of your own, it'll be seen by many more people and you'll get a much better response...and it will be more focused to your particular needs...and easier for you to find later for future reference.

In the meantime, and to get you started, you could read the PAS pinned posts to the right of this page when you log on (or at the bottom of the page if using a mobile).

Lots of very good information there about all things B12 deficiency and PA (symptoms checklist, diagnostic and treatment information and current guidelines that GP's are advise to work within.

Look forward to seeing your post...lots of people here to help and support you 😀

[Cherylclaire Forum Support]

My B12 level was low (196) in Feb last year, so had B12 injections, loading with 6 in a month. After starting 13-weekly maintenance injections, went downhill (worse than before) and so B12 serum levels checked: over 2000 (off the scale). And again later with same result. MMA levels checked: high (351)- so St Thomas' confirmed "Functional B12 deficiency" which has no long-term treatment guidelines, so still on 2 per week: much improved but still fluctuating. Everyone has noticed improvements and all symptoms repairing. Slow though and still working on it. Also took 3-month folate and ferritin course: lower end of normal range on both but still prescribed as losing hair along with marbles. Just had another blood test and awaiting print-out to see how folate and ferritin levels look now. Personally, I think I will continue as they seemed to help B12 repair process. Have had about 5 blood tests (full blood tests and additionals) over the last 2 years, all for good reason, and Dr has now said "no more reason to check B12 levels", so has learnt that mine will constantly show blood is swimming in it. I also asked her not to change my injection frequency from 2 a week to 1 a month yet until she has had expert advice. So far, so good. Am waiting to see a neurologist and she is still trying to contact a B12 vitamin specialist meanwhile.

Blood tests are useful, but a good Dr who looks, listens and investigates ? Priceless!

Let us know how it goes, and ask for printed results. Lots of people here who can give sound advice. Best of luck.

[Foggyme Administrator]

Hi SarahFerguson. I agree absolutely with clivealive , taka and others.

We often see ridiculous things here but that just about beats the lot 😖.

That a nurse responsible for administering treatment for B12 deficency can hold such a view is ridiculous, astonishing, worrying, and frightening...all at the same time. Disgraceful.

Taka is right...B12 deficency and iron deficency are two entirely different conditions that should be treated individually but simultaneously.

It's worth noting that people with B12 deficency often have absorption problems... and hence may have problems absorbing other vitamins and minerals, thus there is always the potential to have with other deficiencies (ferritin, vitamin D, magnesium...are some of the common ones). This is why you'll see much talk on the forum about cofactors (you can search posts for more information about this).

People with PA and B12 deficeny often suffer from low stomach acid so when you get your iron tablets, might be a good idea to try taking them half an hour before food, with a glass of orange juice (or try fbirder 's tip - lime juice). This might help with iron absorption.

Also - if you are having problems with iron, your GP may like to consider doing a full iron panel (serum iron, transferrin, and saturation). This will give a better picture of true iron status - ferritin is only part of the story.

There are many cross-over symptoms between B12 deficency and iron deficiency (or low ferritin levels) and it's sometime difficult to know what symptoms are due to which condition.

At one time, my ferritin levels were 14 (reference range 10 - 240): my GP ignored them for six years because they were 'within normal limits' (ha - that's a very tricky concept). When I did eventually insist on treatment, my levels slowly crept up and...many of my symptoms resolved (breathlessness, weakness and tiredness, postural hypotension (dizziness on standing - and sometimes even sitting)...and I turned from sheet white to a little bit pink 😀. Best ferritin levels for me to,keep,symptoms at bay seems to be at least 80 (but prefer 100) in the reference range quote above.

So...think that you will notice a real difference and start to feel much better if your GP prescribes iron supplements for you - though it could take several months to notice the difference. Just a caution - better to do this under medical supervision with three / six monthly blood checks - having too much iron can cause problems so it needs monitoring properly.

Good,luck and I hope,you start to feel better soon 👍

[SarahFerguson in reply to Foggyme]

My Ferritin level was 7 when diagnosed, Gp wanted to send me for a blood transfusion- I went on iron tablets instead. I've started taking Iron tablets again after reading this, I'm on 600mg of iron as maintenance- the nurse concerned was the the Practioner Nurse, so not just the usual nurse . OMG she could have put me at risk of going down hill again.... I'm going to Gp on 25th gonna make complaint!

[Foggyme Administrator in reply to SarahFerguson]

Good grief SarahFerguson...7 is really really low...not surprised that you feel ill...and not surprised that your GP wanted you to have a transfusion. It's actually good that he offered it...not many seem to.

If the nurse concerned was a Nurse Practitioner it's even more worrying...they are supposed to be highly trained...well above registered nurse level!

Good luck with your GP 👍

[SarahFerguson in reply to Foggyme]

Thank you. I will be making complaint about this nurse! Thank you for all the info.

[Gambit62 Administrator]

main UK guidelines (eg NICE) are that regular blood tests aren't useful for monitoring B12 levels - not good for diagnosis of B12 deficiency so that shouldn't come as a big surprise - unless there is a suspicion that there is non-compliance with treatent

However, if you have an absorption problem it's quite common for other nutrients to be poorly absorbed so testing to monitor that can be useful ... and people often have other conditions such as diabetes and thyroid that do need regular monitoring.

Personally I've taken iron tablets for years - though my diet is probably quite rich in iron - just because I'm a menstruating female.