More battles with GP

[CarlaEP]

Hi everyone,

GP has now stopped continuing loading doses ( after 6 + 10 ) ‘whilst improvement’ continued.

Now he’s backtracking on ‘PA’ verbally conceded 3 weeks ago. He’s now saying it’s a ‘recent blip’ of anaemia - despite previous GP missing B12 level 189 and ferritin 22 in Sept 2018. Since then my haemoglobin gradually dropped from 126 to 114 in February 2020.

Two weeks ago I was told my bloods were ‘normal’ by phone - after I saw him to request ferritin levels check which he ordered.

Now to my horror I have discovered that my overlooked ferritin was only 12 ! The GP only prescribed iron tablets today on the telephone advice of a haematologist after my half an hour ‘resistance’ phone call following the discontinued B12 ampoules ( he had agreed Self Injection ).

Why do we have to have these constant battles ?? Like being on a rollercoaster. I’m sure Big Pharma lobbies NICE. I have my MP on board now too.

Misdiagnosed Fibromyalgia 2014 ?

Worsened headaches, leg and back pains in 2018 when B12 at 189 stared them in the face.

Memory problems ignored along with cognitive/ processing problems ( been accountant 30 yrs ) anxiety, depression. Chronic fatigue and falls etc.

Symptoms mean nothing to them.

Anyway enough of my problems/ whinging lol

Hope you are all keeping as safe and well as possible x take care

[Nackapan]

I know its really hard work.

My daughters ferritin was deemed normal at 11. Until I spotted it as I had alot of symptoms at 29 . Only 39 now on iron but dont shake most of the time now!

My gem was the doctor suddenly saying my deficiency was dietry......I wish.

So backtracking like you say. Aksi agreeing to home injecting if sanctioned by a consultant then bot standing up to a peer.

It actually is distressing at times as I would like along with many others to have a clear treatment plan with reviews. And ti get expert advice

With this condition it just doesnt happen.

Keep safe and whinge all you like 🤣keris us sane dealing with it all.

[Sleepybunny]

Hi,

Sorry to read your fight continues.

I went through years of fighting to get treatment and repeatedly being turned down.

"after my half an hour ‘resistance’ phone call following the discontinued B12 ampoules ( he had agreed Self Injection )"

Might be worth following up your phone call with a polite letter to GP pointing out the potentially severe consequences of inadequate treatment.

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, access to PAS members only.

pernicious-anaemia-society.... See page 2of articles.

In a similar situation I would mention the GP's previous verbal diagnosis of PA in any letter I wrote.

[CarlaEP in reply to Sleepybunny]

Thanks for your continued support Sleepbunny. I will draft a letter this weekend.

[Nackapan in reply to CarlaEP]

I did a letter. Also had s letter from neurologist sent to Gp to, 'sanction sc b12 at home on prescription. Then akd9 turned down IM at home. But I'm able to go to the surgery fir I hectikns as theh apparently are giving them to PA patients and others they deem necessary.

Hope your letter gets better results 🤞

[CarlaEP]

Sound advice Beginner1 thanks,

yes it’s infuriating trying to get through to them. They have no clue ( most GP’s - and certainly mine ) about PA and its diagnosis and treatment and still when it’s staring them in the face it’s blatantly ignored....like my ferritin.

Stay safe