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[Stephanie6637]

Following a blood test my GP told me that my B12 level was low and that I was aneamic, I then started the loading doses and am now on the 3 monthly injection. When I looked at my online patient record I noticed it said I had pernicious anemia I have never been told this or had it explained to me. My question is should i have been referred to a heamotologist? I need the top up injection way before the 3 months is up.

[JanD236]

There is no specialist who is expert in pernicious anaemia and although some people are referred to a haematologist many aren’t, myself included.

If you have neurological symptoms a referral to a neurologist may be more worthwhile.

Guidelines have recently changed to say that injections can be given every 2 or 3 months so it may be worthwhile approaching your GP for 2 monthly injections if you feel this would be sufficient.

My GP is better than many and allowed me monthly injections when I asked.

If you don’t get anywhere with your GP you might decide that like many on this forum it’s best to treat yourself by self injection.

[Stephanie6637 in reply to JanD236]

Thank ou for your reply. I will speak to my GP and see what she says.

[C2691 in reply to JanD236]

Sorry to just jump in on this post but would would the neurological symptoms be?

[JanD236 in reply to C2691]

The Pernicious Anaemia Society website has a full list of symptoms including neurological which you may find useful.

[nano2 in reply to C2691]

Hi C2691

Gait, pins & needles,stabbing pains,shocks,numbness,burning sensation,balance problems besides other symptoms.

[C2691 in reply to nano2]

Thanks for you reply... where would the stabbing pains likely be?

[nano2 in reply to C2691]

My Daughter started with them in her feet then legs then numbness in her fingers but it can hit other parts of your body.

[Vicky2822]

Did you have an intrinsic factor blood test? If this was positive it would have confirmed PA.

There is no cure for PA and it means you need b12 injections for life. The gp can authorise them for every 8 wks (but lots won’t). If you have neuro symptoms they are meant to carry on every other day injections till no improvement ( but I think finding a gp who will agree to that is very rare). This is why so many people self inject as well.

What were your folate, ferritin and vit d levels as these can often be low too and cause symptoms.

Always get a copy of your blood test results is my other piece of advice.

Look on the pernicious anaemia society website and b12d.org (has a symptom checker that lists all the neuro symptoms). There are also some good Facebook groups. You need to educate yourself as much as possible as a significant proportion of drs and nurses know very little about the condition, how severely it can affect our lives, think it’s all in our heads, tell you too much is toxic (I could go on).

[Stephanie6637 in reply to Vicky2822]

Thank you for your very helpful reply.

[auntiesally]

How do you get to look at your patient record on line? I have b12 injections every 12 weeks, I have sca2,

[Woolyhead in reply to auntiesally]

I assume you're in the uk. I asked my doctor's receptionist if I could have on line access to my medical records. She gave me a form to fill in and I had to take it back with I D. Then I waited about 4 weeks, while it was all ok'd. Once that happens they give you the site for viewing purposes, plus an verification number you have to put name and address of doctor, your own address Plus verification code and put email address plus password. Then you're in. A bit long winded. I suppose all doctors are the same. Just ask the receptionist.

[auntiesally in reply to Woolyhead]

Thanks, I will ask when I go next week for my b12 stab!

[nano2 in reply to auntiesally]

Hi auntie sally When I signed up to one of the apps the GPs gave it didn’t allow access to your test results only for appointments and repeat meds. Once you’ve got your paper work from GPs Download NHS App.

[auntiesally in reply to nano2]

Thanks for letting me know

[Stephanie6637 in reply to auntiesally]

Hello. My Gps use SystmOnline I can acces my test results, patient record, summary record, book phone appts and order meds. It's really good.

[Woolyhead]

I think, but I’m not sure, in the UK your less likely to be sent to a heamotologist. I haven’t, neither has my daughter, she also says she needs more frequent injections. Just ask to be referred if you’re worried they can either say yes or no. Any consultant I’ve been referred to recently, I’ve had to ask for, that goes for blood tests too.

[Stephanie6637 in reply to Woolyhead]

My GP is very good but as she said once shenhas to work within the local health Authority rules. My orthopaedic consultant has told me I have Ankylosing Spondylitis and need to see a Rheumatologist asap. My GP didn't he referral but can't make it an urgent one as my joints in my hands and feet aren't swollen and hot. I won't get a routine appt untill February goodness knows what state my joints will be in by then.

[Woolyhead in reply to Stephanie6637]

Yes you're right they have to work within the rules. I have Polymyalgia Rheumatica, I was referred to a specialist in February and managed to get an appointment yesterday. It's not good when you're in pain. I will give you a tip and whether you take it is up to you, I probably wouldn't me being me I would just wait. I've also been diagnosed with Peripheral Arterial Disease, I probably sound a picture of ill health, but up to November last year, when I had a knee replacement I'd never had a days illness in my life. To get back to my tip, which was given by my doctor, if you're really in bad pain go to A & E

You'll get an earlier appointment to see a specialist than if your doctor refers you. My doctor sent me to A&E with PAD, although I could have referred myself, I found out later. My appointment to see a specialist came through in 6 weeks rather than the 4 months I could have waited.

[Stephanie6637]

Thank you that's worth knowing. I can't take Naproxen etc so I am struggling to control the pain all my joints ache. On a morning it takes me well over an hour's to be able to just stand up straight. She has referred me to the early arthritis clinic at another hospital under a different health authority supposedly they see you within two weeks of receiving the referral. I have read numerous articles that say early intervention is vital in the treatment of the disease but getting it is nigh impossible. GP has really tried she referred me to the pain management team they rang and said they couldn't help as I need to see a Rheumatologist, she sent me to a Physiotherapist who said she couldn't treat me as she wouldn't know if she was helping or doing harm.