New to PA and have lots of questions - Pernicious Anaemi...

Pernicious Anaemia Society

31,915 members23,044 posts

New to PA and have lots of questions

Pooky100 profile image
6 Replies

Just been diagnosed about a month ago. Doctor has given me one injection and booked me in for May and then wants to retest bloods in July. My symptoms seem mild compared to others on here. Have had IBS issues since teenage and now 39. I told doctor feel aching like glandular fever, grumpy and forgetful like menopause, and fingers and toes feel lie arthritis. Can't seem to concentrate at work on tasks and get not just tired but exhausted, do others feel like this? Sometimes worry if thinking about symptoms linked to PA make you more aware of linking them to condition. Also since injection had spots on hair line and head, never really had spots before, also tingling more in arms and hands, even holding phone to type this arm aches and pins and needles in hand and fingers. What next ? Been to doctors three times he said levels arnt low enough for loading dose he just took more blood to test and said wait till May.

Written by
Pooky100 profile image
Pooky100
To view profiles and participate in discussions please or .
6 Replies

Hi,

Rather reads like you should go and find a new Dr, one injections is not going to do much for you. There is no known harm of to much B12, lots of harm known of to little B12, your treatment seems inadequate to me and I would try to get a second opinion.

Get copies of all your blood tests so you know what is meant by not that low, and what has or not been tested. Serum B12 test is not a very accurate test, symptoms count as much, your symptoms seem very B12 related.

Learn as much as you can so you can get involved with your treatment, read up, try these:

patient.co.uk/doctor/pernic...

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

And the latest guidance (UK):

bcshguidelines.com/document...

From the above guidance you will see further tests are recommended if you fall into the so called grey area with your serum B12. Test such as active B12 and or MMA etc.

I hope this helps,

Kind regards,

Marre.

Pooky100 profile image
Pooky100 in reply to

Thanks will read these reports.

Jo55 profile image
Jo55

My doctor did the same as yours. Luckily, when I spoke to another doctor (mine was on holiday) because I still felt awful he said I should of had loading doses then injections for life. Keep fighting and maybe try and see a different doctor. Good luck.

Pooky100 profile image
Pooky100 in reply to Jo55

Thanks will do.

Serendipity16 profile image
Serendipity16

Hi, I had to indulge the doc plan to get a proper treatment plan. 1. After a year of monitoring (147-158 B12) I was given 6 injection trial (2 weeks). My blood was monitored every 3-6 months for just over a year. When it got back down to 160 I was allowed a new booster set (6 in 2 weeks) then every 3 months since. Symptoms you list are similar to mine. You do have to keep going back until they start giving you what you need. Good luck.

Pooky100 profile image
Pooky100 in reply to Serendipity16

Thanks will do.

You may also like...

PA questions to improve health

should I have the blood test / do I need a blood test ? Note GP said they plan to extend more...

Numbness in fingertips, and hand. I have PA and Hypothyroidism.

Could all these symptoms be related, because in my experience GO's don't seem to link anything...

How likely is it I have PA

B12 level of <142 and a range of related symptoms - Full Blood count did not show an abnormalities...

Seeing a biochemist to discuss maximising PA treatment...any ideas for questions?

precribe monthly B12 injections but I have also been experimenting with self injecting different...

wow! My new doctor has PA himself!!

frustration dealing with previous doctors. I printed the documents and links Pat sent me and went...