A thousand thank yous : Good morning... - Pernicious Anaemi...

Pernicious Anaemia Society

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A thousand thank yous

Hedgehogs15 profile image

Good morning from England everyone.

When I first joined this group I was astonished by the way you look after each other and the advice I read has given me Hope again.

I won’t bore t=you with all my details again except to say after being diagnosed with pernicious anaemia forty years ago after a big stomach operation, 5 years ago a young doctor decided I didn’t need B12 anymore. Like a fool I believed him and with years of going downhill and feeling like death another doctor listened and now I am due to have my fourth 4 weekly injection. I have up and down days and this weekend has been really bad. My head felt like it didn’t v=belong to me and my stomach was in turmoil. In between these episodes I have been able to garden which I love and feel I’m on the way back to recovery. What interested me Recently was people mentioning their hearing loss. I have gone steady hard of hearing this last few years but put it down to age but now I wonder if it’s connected to B12.

Thank you again everyone and and I wish you all to keep safe and well x

35 Replies

100% agree Hedgehogs it’s been a lifeline for many of us hasn’t it and the support given is second to none,long may it continue and long may you continue to thrive,it’s taken me nearly two years to feel anything close to normal but it does happen lol take care x

Good morning . This is what I mean about caring people like you giving advice and support. I wish you good health x

I honestly think you are right on hearing. I so say went deaf in my right ear forty years ago, offered operation to correct it but refused ( two operations , one too enlarge canal, second to try and restore hearing.) Now I can hearQuite clearly in that ear.

One other thing I have noticed that I dont have a problem with ingrowing toe nails (big toe) like I use too..... it's all a bit weird.

Morning Sallyann. It is strange how this deficiency affects different parts of our bodies. Hope things continue to improve for you. Take care

You too !

SigNi profile image
SigNi in reply to Sallyannl

Love knowing you can hear clearly again in that ear - I am hoping somehow to get my hearing back at least a bit.

Sallyannl profile image
Sallyannl in reply to SigNi

It was something that I hadn't noticed at first, and only when I said that the TV was loud. My partner said I thought you were deaf. I blocked off my good ear and low and behold I could hear in my deaf ear !

Wierd

SigNi profile image
SigNi in reply to Sallyannl

How wonderful! - I have hope. : )

clivealive profile image
clivealiveForum Support

Hi Hedgehogs15

Last Wednesday I had a telephone "consultation" with a doctor (we have difficulty getting face to face appointments in the UK) for the annual review of my diabetes - although how on earth he was supposed to check my eyes, feet and Blood pressure over the 'phone I haven't a clue.

After saying everything was "fine" he said that my B12 level was a bit high and suggested I stopped having my (now) three weekly injections of cyanocobamalin.

I was absolutely furious and told him to check the NHS N.I.C.E. guidelines about testing after treatment has commenced:-

What monitoring is required after treatment for vitamin B12 or folate deficiency has started?

"Ongoing monitoring is unnecessary unless a lack of compliance with treatment is suspected, anaemia recurs, or neurological symptoms do not improve or progress".

I also went on to tell him that high levels of B12 were not "dangerous" but what annoyed me most was that as I had been a patient there since 1966 he being the senior partner in the practice should have known that I have been having treatment for P.A. there every month for nearly fifty years since 1972.

I wish you well

Hi Clive hope you are well.This is such a challenging disorder and it’s unforgveable that these “professionals” can’t seem to equate maintaining decent standard of health and the necessity for continued b12 to do this.It’s so frustrating you must have been spitting feathers.

I’ve decided this week all I’m going to do is a brief letter outlining my distress at this constant badgering to stop treatment and copies of my bloods/ consultants letters confirming p.a then ill go my merry way,they can stick their injections ,theirs hurt too much anyway I’m much better at them lol.

As long as I have the p.a diagnosis on my records they can sod off.

Take care Clive x

Well said. I still haven't forgiven some of the GP's, past and present, in my practice.

Sallyannl profile image
Sallyannl in reply to beginner1

At my last practice I told the doctor I could never ever forgive him........ just before I was kicked out of the practice. Luckily I have a much better practice now.😀

Thanks For your reply Clive.I agree how frustrating it is to see a doctor and also how the medical profession thinks stopping B12 injections are no big deal. I’ve been having treatment for a similar number of years to you and like you say it’s so frustrating when you are tick*ng along ok then your life changes for the worse. I really hope everything works out for you and thank you for taking time to reply to me. Best wishes.

beginner1 profile image
beginner1 in reply to clivealive

I think a cartoon, with pins stuck in it, is indicated. Just as well it was over the phone. He escaped lightly. 😠😡

Hi clivealive,

You could post what's happened as a new thread as I'm sure you'll get an outpouring of support and advice from the many forum members who have appreciated your help in the past.

Have you contacted PAS?

pernicious-anaemia-society....

PAS have a leaflet " Treatment changed - What can you do? " which has useful suggestions. Need to be a PAS member to access it.

pernicious-anaemia-society....

Link below has useful quotes that you could include in a letter to GP.

Testing B12 during treatment (PAS article)

pernicious-anaemia-society....

Testing B12 during treatment

(from Dutch B12 website)

stichtingb12tekort.nl/engli...

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

Local MP may be worth talking to.

Maybe go to the Press?

Newspaper article about patient struggling to get B12 treatment in Scotland

eveningtelegraph.co.uk/fp/i...

And a positive follow up story

eveningtelegraph.co.uk/fp/b...

clivealive profile image
clivealiveForum Support in reply to Sleepybunny

Hi and thanks Sleepybunny I've had that same row (in person) with that same doctor three or four years ago when I twisted his arm to "allow" me to have my injections every three weeks instead of "what it said on the packet" - every four weeks.

Fortunately he is not my doctor in the practice and I stand six feet four and he's about five feet five.

I am a "life" member of PASoc from about six years ago

ACritical profile image
ACritical in reply to clivealive

Hi Clivealive. So sorry this now happened to you as well. He picked on the wrong one! However you could have done without that, yet another stress to deal with . Hope you keep your fighting spirit and continue your great advise on this platform. It helped me when I first started my research in all of this years ago. I thank you and all the other people for that. ♥️

Hi Hedgehogs15,

" I have been able to garden which I love and feel I’m on the way back to recovery. "

Great to have some good news on the forum.

I'm intrigued by your screen name....we have lots of hedgehogs passing through our garden.

Links that mention B12 deficiency and deafness/tinnitus

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

academic.oup.com/ajcn/artic...

Hi sleepybunny, we have lots of hedgehogs in our garden too. We are very rural and even have deer walking through and we have bunnies so love your name. Look after yourself x

Thank goodness your B12 was reinstated. Wishing you good progress and being able to garden again 🐳

Thank you for your kind words and I wish you well also x

Thank you - it is needed at the moment x

I too have steady hearing loss that doesn’t show on my hearing tests. It’s referred to as “hidden” hearing loss. I get blank stares and firm denials when I bring it up with neurologists and ENTs. But there are plenty of published studies confirming the condition and linking it to neurological damage and B12. I am actively looking for ways to treat/reverse it - but nothing promising yet. I saw a recommendation for hearing aids that cancel out background noise. Wishing you health.

I have had gradual hearing loss and wondered if it was untreated thyroid. I have PA and believe I had untreated thyroid for over 20 years, maybe longer. I wear hearing aids. I am 73. My GP practice has cut my injections from monthly to two monthly to three monthly, and no matter what I say in letters they are taking notice of the neurologist and haematologist. I wrote to the PA. Society but they have not replied - I am a lifetime member , what they call a legacy member. I will ring them today. Neuro and haematologist just say levels are too high. I've quoted guidelines and all sorts to no avail. I do inject myself. I have neuropathy in legs and feet which has worsened since diagnosis in 2008. I feel so frustrated and angry. I went to a meeting of our gp practice patients' group and a lady there had bone marrow cancer and was convinced her doctor was right when he said B12 levels were too high and stopped her injections. How many other people will become ill because they take as gospel what the doctor says?

I am so sorry to hear you are so unwell and not being listened too. Thank goodness we have this caring group as a lifeline otherwise we would be in the wilderness. It seems to be the younger doctors who wont acknowledge that if you have PA you need B12 for life. I have written a letter to my previous doctors practice to complain about the new doctor who stopped my B12 for five years after having a monthly injection for over 40 years. I’ll let you know the outcome. So many of us are suffering enough without the hindrance from some medical people who should be on our side. Take care x

Yes, you are right, they seem to take no notice of us - my latest letter from the GP states:

'A recent letter from the Neurologist in August 2021, clearly states that the Haematologist and Neurologist recommend B12 injection "no more frequently than 3 monthly". ........

It then says 'This is the individual person-centred recommendation from a Consultant for your treatment'.

They may have said this last sentence because I said to them each person should be treated as an individual with regard to B12 treatment, I didn't expect them to throw this back at me! They are ignoring the guidelines for neuropathy. I didn't get the correct treatment anyway on diagnosis - I should have had every other day 'until no further improvement'. I have pointed this out - no reply on that one. I feel ok as I inject and now also self-treat for thyroid, although not sure if they are taking over that. There always seems so many things to query and chase up with doctors. If they did their job properly we wouldn't have to spend our lives making ourselves well!

MoKayD profile image
MoKayD in reply to mountainice

I didn't suffer hearing loss (thankfully) but for several years prior to B12 treatment I had an ache/pain in my right ear. I went to several doctors about it but they didn't find anything wrong. After starting loading doses the pain went away. I only feel it now, occasionally, when I am due for a shot.

Hedgehogs15 profile image
Hedgehogs15 in reply to MoKayD

Really -leased you are seeing some improvement. I really wish you well. Take care

mountainice profile image
mountainice in reply to MoKayD

I am pleased you had no hearing loss and the pain was resolved. They never think it could be B12 !!

This is what we hear time and again, it’s as though we are hypochondriacs rather than just people needing B12 to feel better and get on with our lives. I’m really pleased you have started to feel better. Take care

Definitely - if we look into our health, we must be hypochondriacs ! A psychiatrist was sent to my house in the last two years through an endo who said I had health anxiety, confirmed by this psych as 'severe health anxiety'. I only agreed because a) I am not afraid of psychs because I had problems 25 years ago (now believe it was attributed to hypothyroidism and B12D) - hospitalised 4 months one year, 3 months the next, and b) my GP said I had to go through a 'process', so I agreed! I was offered by this psych to 'do nothing, have medication for anxiety or therapy'. I chose to do nothing, obviously ! In fact, it was not too long after that, that the wonderful people on this forum helped me to self-treat for hypothyroidism. Those endos were terrible, so mysogynistic. Dizziness resolved, feeling sick and terrible bowel problems resolved, but bowel problems fully resolved after going lactose free (only after talking to my daughter-in-law who had researched a lot). Endo told me it must be anxiety (re bowels). Best wishes.

Hypochondriacs are people who have a real medical problem that doctors cant resolve.

It doesn't say that when I look up the word, perhaps you've found that somewhere else?

No that's my own definition lol 😜😂

👏😄

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