Pernicious anaemia

[Hedgehogs15]

Good morning from the UK. After being without my B12 injections for 5 years due to a young doctor saying they weren’t need any longer and feeling so poorly thankfully I found this post and I was so grateful to so many of you rallying to help me. I’m asking for advice again please, I have now had 2 injections at 4 week intervals. I seem to be feeling worse-sore mouth worse than ever, stomach discomfort , feeling dizzy and dreadful brain fog. I know many of you are on this website because you yourselves are unwell but wondered if you could advise me the way forward please. Take care everyone.

[wedgewood]

We often hear that once treatment starts , symptoms get worse before they get better . You should think of that as part of the healing process . As you have been without your injections for 5 years , I think it would have been good to have had 6 loading doses to start with - 6 injections over 2 weeks .Then you need b12 injections often enough to keep deficiency symptoms at bay ( which can vary wildly from person to person )

[Hedgehogs15 in reply to wedgewood]

Thank you for your sound advice which does make sense. I’ll hang in there and like you say hopefully things will improve.

[wedgewood in reply to Hedgehogs15]

If you find it impossible to get sufficiently regular B12 injections to keep symptoms at bay , it’s possible to self inject . Many of us on this forum have to do this. It’s possible to get B12 single use ampoules from excellent online German pharmacies , and needles , syringes swabs and yellow sharps disposal boxes from U.K. sources . Just ask for the information on here if necessary . Best wishes

[Hedgehogs15 in reply to wedgewood]

Thank you so much for that information. I am seeing the -reactive nurse on the 24th and if I can’t get the loaded doses that you mentioned I will come back and ask you about self injections. You are very kind to take the time to explain how things work. Best wishes.

[wedgewood in reply to Hedgehogs15]

Ask for loading doses . 6 over 2 weeks unless you live in Gloucestershire, where they give 5 !👍

[Hedgehogs15 in reply to wedgewood]

Thank you Wedgewood x

[mastap2003]

I've been through the same with a genius doctor who seemed to think pernicious anemia just disappears!

I changed my surgery, started getting neurological problems due to not having injections for some time, and the neuro-specialist I saw ensured my injections were resumed.

I'd consider changing doctor, or at the very least ask them to research the disease. Perniciou anemia is for life, not just for christmas

😒

[Hedgehogs15 in reply to mastap2003]

Thank you for your advice which I totally agree with. Fortunately I’ve changed surgeries and this new doctor has reinstated my B12. Like you say pernicious anaemia doesn’t disappear. Hope your health continues to improve.

[Cherylclaire Forum Support in reply to Hedgehogs15]

This could take a while. It is easy to get disheartened in the meantime.I was given very good advice: to keep a daily record of your symptoms.

It doesn't need to be all of them if you have many, but make sure you have a range (neurological, physical, mental/emotional, etc) in which it may help you if there is at least one visible symptom, one severe symptom, one (initially) daily symptom and the one you'd most like to see gone. Also record when you receive your injection.

Given time, hopefully you will see (and have recorded evidence of) improvements and how that relates to your injections. A pattern may eventually emerge regarding how long a single injection can keep your symptoms at bay. This will tell you and any interested GP or consultant what frequency your body needs to pre-empt that.

That should be the aim after all.

It may also be an indicator of when you have improved sufficiently to attempt to reduce injections. That is more of a wish than an aim, and can take a very long time.

The main thing is not to give up. wedgewood is absolutely right: five years wait for reinstatement of much-needed injections warrants starting again with the loading dose before finding the frequency you need. This frequency could be as often as every other day initially- which is the recommended medical guidance for those with neurological symptoms. Damaged nerves take a long while to heal. If left for too long, some damage can remain, despite this regime.

This record-keeping might seem like a chore at first, but can help boost morale if symptom reduction is imperceptibly slow. I have seen a very gradual reduction in symptoms over years. Life is now improving and I still believe there is more to come.

Reason for using a visible symptom: GPs will know if it improves, photos can be kept as proof of it's existence. Hair loss, angular cheilitis, glossitis, yellow-grey pallor - these can get far more attention than cognitive impairment. This is based on the assumption that your GP will see you at some point.

Now might not be the best time to ask, but I think you should have ferritin, folate and vitamin D checked or re-checked if you haven't for a while. These can get low, too. low enough to slow things down even more.

[Hedgehogs15 in reply to Cherylclaire]

Thank you for your reply and what a good idea to keep a record. I’m due back to see our practice nurse on the 24th for my third injection so I will take a list of my symptoms with me. Take care.

[Cherylclaire Forum Support]

Just to add: the medical guidance stating frequency for those with non-dietary B12 deficiency with neurological symptoms is linked in Sleepybunny's reply to GO87's post today titled "Can anyone advise me on what these blood tests mean please ?"

[Sleepybunny]

Hi,

Have you considered joining and talking to Pernicious Anaemia Society (PAS)?

They can offer support and pass on useful information. I think they would be interested in hearing from someone whose injections were stopped for so long.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS membership

pernicious-anaemia-society....

PAS website has lots of useful leaflets/articles which some forum members pass on to their GPs.

pernicious-anaemia-society....

I am not sure why you are having one injection every 4 weeks.

After so long without injections, I would have expected you to have had a set of loading injections.

If you have neurological symptoms, the BNF (British National Formulary) suggests a B12 loading injection every other day for as long as symptoms continue to get better then an injection every 2 months.

GP/nurse can find this info in BNF book Chapter 9 Section 1.2 or online in next link...

BNF Hydroxycobalamin

bnf.nice.org.uk/drug/hydrox...

Your CCG/Health Board for your area might have its own local guidelines on treating and diagnosing B12 deficiency. Might be good to find these online and have a look.

I think it might be helpful if you could find out what your folate and iron and vitamin D levels are like.

Once B12 treatment has started, it is not recommended that B12 levels are checked regularly.

TESTING B12 DURING TREATMENT

pernicious-anaemia-society....

If you're unhappy with your treatment, see link below about writing letters to GP about B12 deficiency.

b12deficiency.info/b12-writ...

I have written some very detailed replies on the forum with lots of B12 info which you may find interesting.

I am not medically trained.

[Hedgehogs15 in reply to Sleepybunny]

Thank you and I am going to join the pernicious anaemia society . With them and thus fabulous site it’s comforting to know you are not suffering alone and amazing people take time to look after you

[Sleepybunny]

Hi again,

There is no set time limit stated in BNF as to how long the every other day loading injections can continue for patients with B12 deficiency if neuro symptoms present.

Could be for a lot longer than 2 weeks....BSH Cobalamin and Folate Guidelines suggests a review after 3 weeks of every other day loading injections but my understanding is that if improvement in symptoms is continuing at 3 week mark then the every other day loading injections should continue.

If you have neuro symptoms and GP is reluctant to consider every other day loading injections then you could draw their attention to the increased risk of permanent neuro damage including damage to spinal cord if a patient with B12 deficiency with neuro symptoms is under treated.

Neurological Consequences of B12 Deficiency

Some details in links below may be upsetting to read.

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord

pernicious-anaemia-society....

Blog post from Martyn Hooper's blog, mentions SACD

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

B12 article from Mayo Clinic in US

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

Links below are to forum threads where I left some more detailed replies with lots of B12 info which you may find useful eg more about causes of b12 deficiency, B12 books, B12 websites, B12 articles and a few hints on dealing with unhelpful GPs.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

Next thread was started by someone with neuro symptoms

healthunlocked.com/pasoc/po...

Good luck

[Hedgehogs15]

I really can’t thank you enough for taking time to find all this information for me. I am thrilled that with yours and other caring people I might actually turn a corner and start to feel well again.I was diagnosed with PA after a big stomach operation when I was only 28. This was because I was a victim of domestic abuse and my husband used to frequently kick me in my stomach. I was told something about intrinsic factor and vagus nerve. I was put on B12 injections after collapsing and had them for 40 years until 5 years ago when this young doctor said I no longer needed them. Thank goodness I’ve found an understanding doctor now and Healthunlocked x