Newbie - Amy advice appreciated x

[Mandymoos8]

Good morning

Recently diagnosed with low b12 (80) and pernicious anemia. I’ve had my six loading shots and due to see doc next week. I’ve made the appointment - after the initial six shots I wasn’t advised what to do or when to book the next one so I want to chat it through with him.

What are the important questions to ask?

Should I be asking for further investigations of low folic acid, vit d and anything else ?

Should I take folic acid supplement anyway and if so what dose?

I am a single mother to three children and work nearly full time. I took two weeks off work to try and let my body do what it needs to to absorb the b12 and think I feel a bit better but difficult to gauge. My main symptoms are tiredness, heads aches, weakness, dizziness and balance.

This seems like such a supportive amazing Community full of advice, positivity and really constructive help. It has helped me already learn so much and feel a little less alone !

Thank you in advance x

[clivealive Forum Support]

Hi Mandymoos8

The N.I.C.E guidelines tell your doctor how to treat patients with B12 deficiency and P.A.

Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

For you he should Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months.​"

It is also important that your Folate level is monitored as this is essential to process the B12.

Replacing B12 will lead to a huge increase in the production of blood cells and platelets (which occurs in the bone marrow) and can lead to rapid depletion of folate and iron stores; this can then limit the expected recovery of Haemoglobin. Both iron and folate may be needed.

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.

Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

I am not a medically trained person but I've had Pernicious Anemia (a form of B12 deficiency) for more than 46 years.

I wish you well.

[Mandymoos8 in reply to clivealive]

Thank you so much Clive for this information I will certainly read the link and go armed with your information. It’s very difficult however when most doctors are so dismissive and don’t have enough time to hear everything you have to say isn’t it. I’ve had the six shots and then heard or advised nothing ?!

Thank you again for your help

[pitney in reply to Mandymoos8]

Hi Mandymoos8,

I think most of us feel we do not get that much information from our GPs and we end up doing a lot of searching for answers ourselves , Have you thought about joining PAS they have a web site with lots of info and are always willing to help if they can. Also is it possible to make a double appointment at your surgery, if so make a list of questions that you would like to ask and take it with you. I know all GPs are pushed for time these days but some still offer double appointments if you feel you need one to talk about your health. Plus there is always someone to talk to on here Mandymoo ,please do not ever feel alone there are lots of us out here feeling as you do and Im sure they all wish you well

Hope all goes well and best wishes

[Mandymoos8]

Thank you Pitney -

I will def join the PA society too. I love the fact there is so much support on here as right now it all feels so daunting. I’ve taken two weeks off work but can’t afford any more time off as will only receive statutory pay - but to be honest I feel worse after my loading injections than I did before so panicking about returning to work ! I’ve got my doc appt tomorrow so will voice my concerns but not holding out much hope at the moment !

Thank

You again for the support

It is much appreciated x