Think I May Need More Injections?

[hjcohen]

Hello Again,

I posted on here about four weeks ago after recently being diagnosed with PA following years of symptoms. I had my loading shots over two weeks and after the third jab I couldn't believe how 'well' I was feeling, it was amazing like I'd had the switch turned back on!

So it has now been four weeks since the last shot and I have noticed that my memory isn't quite so sharp, struggling to find words again, and I've woken up this morning and just feel like I haven't slept at all, I feel so tired!!

I'm so disappointed as I am now not due any more injections for eight weeks, or to even see the gp for another month to have my blood retested. I don't really know what to do and was wondering if anybody on here could offer advice. Am wondering whether I should have had more injections at loading stage or if I should ask to see a specialist? The promising aspect is that I know I can feel good with the vitamin jabs, I think I just need more frequently?

I am still taking the 5mg of folic acid as this was also very low.

Thank you all.

[Hidden]

Hi Hayley,

It is possible that you may need more frequent B12 injections to stay well, and unfortunately that depends on your GP. You can but try, walk out the door mat at the surgery, grow a thick skin, after all they need patients to get their pay, so do not be shy and tell him her how3 you improved and how you are now sinking. You never know, he/ she may be open to more frequent injections. If not , yes seeing a haematologist may help and learning to self inject helps,

Kind regards,

Marre.

[hjcohen in reply to Hidden]

Thanks Marre, I will go back and see the gp. if I don't get anywhere I will ask to be referred to haematologist. Regards. Hayley.

[Gambit62 Administrator]

You mention 'years of symptoms' - I presume this includes some neurological symptoms - many think that the brain fogs should count to that but certainly if you have tingling in hands and feet that would definitely count as neuro-symptoms.

The NICE guidelines if neuro-symptoms are involved are loading shots every other day until things stop improving then top ups every 2 months - though for a lot of us even that isn't enough so we find other ways of supplementing. Definitely worth going back to your doctor.

cks.nice.org.uk/anaemia-b12...

[hjcohen in reply to Gambit62]

hi, thanks for your reply. I don't have any tingling, but have had over 20 years of ibs, then more recently migraines, extreme tiredness, dizziness and brain foggiest (very recently) - over two years ago I had blood tests and was very low in folic acid (this has reoccurred), vitamin b12 (although just told to take supplement), vitamin d and calcium. My blood test also showed marker for antibodies for PA? So 2 years on, they retested blood and found that folic acid again very low as was vitamin b12 - but this time because of the levels and the marker for PA they diagnosed PA and said I would need jabs of B12.

I was given 6 jabs over two weeks, and then told my bloods would be retested in 3 months.

regards

Hayley

[Gambit62 Administrator in reply to hjcohen]

Tiredness, brain fog and dizziness should count as neurological symptoms which would mean that the treatment per NICE would have been injections every other day until you stopped feeling any improvement in symptoms, followed by maintenance every 2 months so it might be worth talking to your GP ... alternatively you could try this recommendation

cks.nice.org.uk/anaemia-b12...

Anaemia - B12 and folate deficiency

Last revised in February 2013

Symptoms persist despite maintenance vitamin B12 treatment

What if a person is still symptomatic despite maintenance vitamin B12 treatment?

If a person's symptoms recur before the next injection is due, seek specialist advice from a haematologist.

Hope you get the GP to listen.

[MariLiz in reply to Gambit62]

Hi Gambit, I have read your reply to HJCohen with great interest. When I asked my GP about a referral to a haematologist he categorically told me that I haven't got a blood disorder! MariLiz

[Gambit62 Administrator in reply to MariLiz]

Quite likely that you don't have a blood disorder because PA isn't a blood disorder, it's an autoimmune condition that prevents your body being able to absorb B12 which results in B12 deficiency which, left untreated will result in blood disorders as well as a whole lot of other nasties. Once upon a time it was the case that the problem first showed up through abnormalities in the blood, which is why it was given the name pernicious anaemia ... but these days there tends to be a lot of supplementation of F9 (folate) in diets with the result that blood abnormalities are being seen less and less and other problems are surfacing first.

Problem is many GPs still seem to think that PA is a blood disorder. Hey, ho!

[MariLiz in reply to Gambit62]

Thanks again Gambit, I guess it's going to take me a bit of time to get my head around all this! I suppose because he told me my blood platelets were oversized I expected a referral to a blood specialist. MariLiz

[Gambit62 Administrator in reply to MariLiz]

Not sure but as I understand it B12 deficiency does affect blood cells. It used to and still can show up in enlarged and malformed red blood cells but can also affect white blood cells and also platelets. You could try doing some research on B12 and platelets and see if there are any articles you could share with your GP.

Have you tried reading any of the following - might be worth getting hold of if you haven't

Pernicious Anaemia - the Forgotten Disease - Martyn Hooper

Living with Anaemia - Martyn Hooper

Could it be B12? An epidemic of misdiagnoses - Sally M Pacholock

Can be quite scary once you start to realise how B12 is just being dismissed but ...

[hjcohen]

Many thanks for this information, I shall speak to the GP and see if I can get referred or at least more frequent injections. Regards. Hayley.

[Anne1961]

Go back yo your gp and explain exactly what you have said on here about how much better you felt. Ask him to do them monthly to see if that's the level you need. Take guidelines from here to help you. You will probs have to fight for this though! Good luck x

[Sita505USA]

Have you tried oral supplements? Sublingual B12 in one of the forms of B12 may be helpful. It is a difficult terrain to navigate; my best regards to you.

Sita