Help with Doctors

[LeilaB2019]

Hi there, I am looking for some advice. My husband has recently been diagnosed with Pernicious Anemia with his initial blood test showing his B12 to be 72. My understanding is that is incredibly low. Just over 3 weeks ago he finished the six initial loading doses and there was an immediate improvement in his well being. However, he is now suffering from fatigue again along with forgetfulness, heart palpitations and tingling legs and feet. The symptoms come and go but at times he can be particularly bad with it. Unfortunately his usual doctor is away for the next 10 days and so he has been in touch with the duty doctor who has refused any more injections until he has a blood test. However, we both know the blood test results are likely to be skewed due to his recent loading doses. Has anyone got any advice on how we can deal with the doctors and do his symptoms qualify as neurological? His symptom on diagnosis was extreme fatigue but none of the tingling or forgetfulness, that is new. Any help or advice would be very much appreciated. They want him to wait until January before he gets his next dose. Thanks in advance.

[Nackapan]

That happened with me. I had 6 loading doses and was supposed to wait 3 Months.

I listed all my symptoms .

I asked them to read the bnf guidelines which one gp did

eventually. I had ti go through them all 5

! I got the advice on here . I after a 6 week gap (too long g) went in every other day until no further improvement. My level was higher 106ng/l but was bedridden virtigo ect.

I improve after the 12th one I think

PAS could help if you a member too.

I hope you get it sorted

[LeilaB2019 in reply to Nackapan]

Thanks Nackapan. I have just joined so will definitely contact PAS if we don't get any joy. We are thinking we might send an email to the practice manager with the BNF guidelines attached and highlighted for them to read. Fingers crossed someone starts to take it seriously soon.

I just can't get over how poor the care is for PA. I have recently been diagnosed with autoimmune hepatitis and the care I have received in comparison to my husband is worlds apart!

[Nackapan in reply to LeilaB2019]

Yes I was and still am shocked by the care and ignorance. I've had to push all the way. Convince them I'm not mentally ill ect ect

Very difficult as would really at times just like some understanding of my symptoms. Also reasons. I haven't a diagnosis of PA . Surely that should help with getting the treatment your husband needs.

I'm glad you getting the right support and treatment for your condition.

Take care

[LeilaB2019 in reply to Nackapan]

Thanks Nackapan. You too and I hope you get a diagnosis soon. Hopefully with the push for new Nice guidelines from PAS there is hope for the nearer future.

[Ritchie1268 in reply to LeilaB2019]

Good idea to email & attach guidelines!

If that fails the PAS will offer advice.

Good luck👍

[Gambit62 Administrator]

the tingling in his legs indicates neurological involvement - there is a more aggressive protocol for treating this which is B12 injections 3x weekly until symptoms stop improving.

You could try drawing this to the attention of the GP - they can access the details through the BNF or the NICE guidelines if they are based in the UK

The standards are also here

onlinelibrary.wiley.com/doi...

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

[LeilaB2019 in reply to Gambit62]

Thank you Gambit62. The duty doctor seemed completely unconcerned by these symptoms yesterday. We will include the Nice guidelines in the email and hope they start to pay attention. Thank you

[Sleepybunny]

Hi,

Sorry to read that your husband is suffering.

Some of his symptoms would appear to be neurological so I would expect him to be on following treatment pattern if in UK.

UK recommended treatment pattern for B12 deficiency WITH neuro symptoms is ...

A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months

I've written a very detailed reply on this next thread which I suggest you have a look at.

It has links to UK B12 documents, B12 websites, B12 books and other B12 info. Also some info on dealing with unhelpful GPs etc.

healthunlocked.com/pasoc/po...

I suggest contacting PAS as soon as possible as they can suggest info to pass to GP and can sometimes intervene on behalf of members. PAS office is open 8am till noon today (Wed) and on some other mornings.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no 01656 769717 answerphone so messages can be left.

PAS support groups in UK

pernicious-anaemia-society....

There may be a PAS support group close to you who can provide emotional support and info about helpful GPs in area.

Delay in receiving adequate treatment may increase risks of permanent neurological damage.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

Link about writing letter to GP if under treated for B12 deficiency with neurological symptoms.

b12deficiency.info/b12-writ...

Has he been referred to

1) a neurologist?

2) a haematologist?

NICE CKS link below mentions GPs should seek advice from a haematologist for patients with B12 deficiency with neuro symptoms.

I used to put requests for referrals into a brief, polite letter to GP along with evidence that supported request eg symptoms list, test results, personal and family medical history, extracts from UK B12 documents etc.

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...

BNF guidance on treating b12 deficiency changed recently.

pernicious-anaemia-society....

NICE CKS

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

Warnings

1) B12 deficiency is not always well understood by GPs and specialists so it pays to be well prepared for any appointments.

2) Some GPs are not able to cope well with assertive patients so be prepared for GP/patient relationship becoming strained and have a back up plan eg another GP surgery to go to.

nhs.uk/common-health-questi...

3) Some areas in UK are using out of date guidelines on the treatment of B12 deficiency. I suggest tracking down local guidelines for your area and comparing them with national guidelines eg BSH, NICE CKS and BNF.

I am not medically trained.

If all else fails, some on forum resort to self treatment. I did when all my attempts to get treatment from NHS failed.

[LeilaB2019 in reply to Sleepybunny]

Thank you so much sleepy bunny. I am just getting the kids off to school and will have a good read and take it all in. Thanks everyone. This forum has been amazing!

[Sleepybunny]

Hi again,

Good luck to you and your husband.

"We are thinking we might send an email to the practice manager with the BNF guidelines attached and highlighted for them to read."

I strongly recommend that you speak to PAS before sending the e-mail as they can point you to the most useful info.

PAS have a leaflet " An Update for Medical Professionals: Diagnosis and Treatment " which some on forum pass on to their GPs.

pernicious-anaemia-society....

You could also mention to your GP and practice manager that PAS website has a section for health professionals. It is free for health professionals to join PAS as an associate member.

pernicious-anaemia-society....

Another incentive for your GP to join is that PAS may be able to suggest courses about PA/B12 deficiency that carry training credits for GPs' professional development.

Something else to think about is that most GP surgeries have a PPG (Patient Participation Group ) group. Joining this may be a way of ensuring GP practice is aware of issues relating to PA and B12 deficiency in general.

Lots more info in that link to another forum thread I mentioned in other post.