Will I get better? : When or will I see... - Pernicious Anaemi...

Pernicious Anaemia Society

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Will I get better?

PhilAB profile image

When or will I see improvements?

Diagnosed june 2020 with PA but suffering since feb 2018.

Concentration gone, memory gone, time goes fast, brain fog, tired.

Had 5 injections in 2 weeks and now twice a week for 6 weeks (on my 2nd week now) then once a week for 2 months.

Jan 19 - b12 was 157

Aug 19 - b12 152

May 20 - b12 127

14 Replies

It will take time . Main thing is you now getting the right treatment. It does creep up on alot of people as the b12 depleted overcapacity few years. Symptoms si similar to lot of other things.

I only had one b12 test .

Oct 18 .

I'd not been right for about 3 years .

Try and go with the flow healing is not usually in a linear line.

We all need different frequencies of b12 injections too.

The jump to 2 months may be okay but for many they need more.

So bear that in mind.

I wish you well.

clivealive profile image
clivealiveForum Support

If it's any consolation PhilAB I've had P.A. for over 48 years and I'm still "clivealive" at the age of 79.

It was 13 years between a partial gastrectomy at the age of 17 in 1959 and eventual P.A. diagnosis in 1972 by which time I was a walking "Zombie" and "given two years to live" by my then youngish doctor who was not much older than I was.

I was given the option of eating raw liver three times a day or having B12 injections for the rest of my life and chose the injections . I went to my "old" retired doctor's funeral service a couple of years ago and remembered her words.

How long for recovery? No-one knows or can tell as we are all different and some things can appear to get worse before they get better as the B12 starts to repair the damage caused by the deficiency.

Do you know what your Folate level is - it may be that you need to supplement with folic acid as some symptoms of Folate deficiency are similar. Ask to have it tested if not done already.

I wish you well and bid you goodnight

PhilAB profile image
PhilAB in reply to clivealive

Thanks for replies. Yeah, another member on here told me to take folic acid, 400ug currently once a day. I am definitely experiencing ups and downs.

I feel my body is healing as I had a shoulder injury and bad back which both seem to have improved. But, the brain fog, concentration, memory is still bad.

Cherylclaire profile image
CherylclaireForum Support

It does get better, Phil.

Some symptoms take longer than others, and some people find that they get worse before better. I know I did.

A balance is difficult to achieve at first, but certainly having folate, ferritin, vitamin D and thyroid levels tested can give you a better idea - all or any of these could be either dropping, struggling, low within range, or out of range. Always worth getting a printout of your results as even very low-range may come back as "normal- no action". Blood testing right now might prove a problem.

If supplements are given or suggested, your GP should continue to monitor these levels as, unlike B12, above range with folate and ferritin can cause problems too.

It took me a couple of years to raise folate and ferritin levels and to stabilise them. Thyroid was struggling but okay. Vitamin D I now get on prescription as I was found to have osteoporosis of the spine.

As for B12 injections, again it's difficult to know what frequency works or where more is needed as we are all different. Only you will be able to determine that over time, as it is impossible for a doctor to measure symptoms - or even recognise a lot of them. Their list falls far short of the true picture. It may well help you and possibly your GP if you record your symptoms by listing them, recording daily when they occur, severity, and how that relates to the B12 injections. Patterns, deterioration, or hopefully improvements in symptoms can really help determine your needs and demonstrate what works and for what duration.

Just my opinion, but I think staying with one GP can help, as they are more likely to recognise your symptoms over time, especially any visible ones. This will help them to guage whether treatment is effective or not.

Hoping for a speedy resolution for you !

PhilAB profile image
PhilAB in reply to Cherylclaire

Had bloods done on 10th june.

Vitamin D is 227.5 nmol/L

Ferritin 53 ug/L

Magnesium 0.87 mmol/L

Calcium 2.39 mmol/L

Alkaline phosphate 33 U/L

Serum album 42 g/L

Rheumatoid factor was negative.

Rheumatoid factor <20IU/mL

Serum rate level is 0.37mmol/L

Anti nuclear factor was negative

I hope these are ok? I checked online as do not trust doctors anymore. My alkaline phosphate is close to low.

Phil

Cherylclaire profile image
CherylclaireForum Support in reply to PhilAB

Not a doctor, Phil, but your vitamin D looks fine to me and your ferritin at 53 ug/L is almost there (GP told me that below 60 could give you symptoms when mine was always around 35-45) so I would concentrate on your B12 first.

As for the rest, I really don't know -and if I was a medical person, would want to see what the ranges were for these to be sure.

It takes time, for me I’m 3 years into treatment and still recovering. You are having neurological symptoms, so by the nhs guidance you should be getting every other day injections until you stop seeing improvement. You may want to discuss that with your doctor especially if your symptoms get worse or stop improving as they decrease the frequency of your injections. I’m in the US and have had to source my own as my doctors think it’s crazy to keep up frequent traffic injections as it’s not in their textbooks, but my body disagrees. I’m so thankful for this forum that has given me the info I need to keep getting better.

PhilAB profile image
PhilAB in reply to aksundell

NHS offered me 5 injections and then one injection every 3 months. I had to talk my doctor into 2 a week.

Will have to find nhs guideline for injections every other day.

PhilAB profile image
PhilAB in reply to aksundell

Thanks aksundell. Although really upsetting that physically I am fine and it seems I have really only neurological symptoms, at least I can bot tell doctor that I want injections every other day.

Hi,

Have you considered joining PAS who can pass on useful info and offer support?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS support groups in UK

pernicious-anaemia-society....

No meetings during pandemic.

B12d.org has some online meetings during pandemic.

Lots of useful info on B12 Deficiency Info website

b12deficiency.info/

I wrote very detailed replies on another forum thread with links to B12 deficiency symptoms lists, causes of b12 deficiency, info about tests for PA, list of B12 books, list of B12 websites, UK B12 documents, letters to GP about B12 deficiency and other B12 info including hints on dealing with unhelpful GPs, which you might find helpful.

healthunlocked.com/pasoc/po...

I left a detailed reply about impact of pandemic on B12 treatment in UK in next link.

healthunlocked.com/pasoc/po.....

I am not medically trained.

PhilAB profile image
PhilAB in reply to Sleepybunny

Just joined gold membership. I have actually already purchased the book. So will have 2 copies, I think I may donate one to my doctors as bunch of fools.

I want to sue my doctors for incompetence. I have had my life destroyed because they could not diagnose for 2 years.

Nackapan profile image
Nackapan in reply to PhilAB

Yes very frustrating

It was my first ever b12 test and ig took a collapsed to get it done.

Ihadnr been to the the doctors for years (7) tou would think an alarm bell when I went a few times after falls. . Feeling weak and fatigued.

No blood test .

Put down to stess and thr menopause. I thought something was wrongl otherwuse wouldnt have kept going back!!

So yes I understand the frustration

I'm trying to look forward.

Only thing we can do really. Also raise awareness .

Try and get as well as we can.

Difficult I know .

It's taken me a year to get my ferritin up to 57 . Aiming to maintain that level or up to about 70. I was also told you csn get symptomatic but I was told below 50!!

Definitely helps. My ferritin was tested once in the past and it was 61. It dropped to 29. Gp said fine . I was shaking and breathless . That went .

I've never ended iron before .

Take care

Sleepybunny profile image
Sleepybunny in reply to PhilAB

Hi,

Apologies as I've only just seen your comment above.

I understand that feeling. In my case I felt I didn't have enough evidence or enough support to consider legal action.

I suggest putting any queries about treatment/diagnosis into a letter to GP and maybe copied to practice manager. useful to have a paper trail in case of formal complaints/legal action in future.

Think about taking witnesses with you to face to face appointments.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

MPs/devolved representatives may be worth talking to if struggling to get recommended levels of treatment from NHS.

List of CCGs

nhs.uk/servicedirectories/p...

Track down local guidelines on B12 treatment for your CCG/Health Board and compare with following

UK B12 documents

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF

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

NICE CKS

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

More info in the link to another thread at bottom of my other post.

There are advocacy services which may be useful.

citizensadvice.org.uk/healt...

nhs.uk/conditions/social-ca...

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