Please can I have some advice - as I am struggling with the health professionals

[MandyPandy]

Sorry a very long story, about a year ago I noticed that my left hand was shaking but I just ignored it, then I started getting memory loss and would not remember conversations that I had had with my husband, also was going to bed really early (7.30pm) as was so tired. In November my boss told me that I was acting like her elderly mother, I knew that I had to go to the drs so went and asked for a hormone test as maybe I was going through the menopause (I am 41) as an afterthought I asked for a B12 check as my mother has PA. I was called from the drs to say that my B12 level was 114 and that I would need six loading doses and then three monthly injections, I had the loading doses and for about three weeks felt great (was staying up to 9PM)!!, After three weeks, I started noticing that my hand was shaking again, so made an appointment for the Drs which was for three weeks time, during those three weeks my energy completely went all my symptoms came back with a vengeance. I found myself having to take rests in between my housework, work etc and that my memory was getting really bad and at one stage I couldn't spell or remember what had happened an hour ago, was also getting pains across chests and my whole body shaking after walking 50 yards. Ended up in A&E where B12 level was 465, the Dr says that is in range, my mum has PA and two weeks after her three monthly injection her level is 2000. Went back to the drs and she agreed to weekly injections (after a real fight and advice from here) and would send off a referral to Hematologist and Neurologist, had one injection last week and feel my memory improving a little, had a call yesterday to say that Hematologist says was levels are in range and the drs have pulled my weekly injections, but that as my Neurological symptoms are so bad (I failed two in the Drs surgery twice over two appointments) that I need to go and see a Neurologist with urgency and I have made a private appointment for next Tuesday. Please can anyone give me some advice as currently I am not working and find it really hard to look after my family as Drs have told me not to do anything and as I am paying £250 for the appointment on Tuesday, I would like to get the most out of it - what are your thoughts. Thanking you in advance

[Sleepybunny]

Hi Mandypandy,

Have you considered contacting PAS (Pernicious Anaemia Society)?

pernicious-anaemia-society.org

PAS tel no [phone] answerphone so messages can be left.

Are you In UK?

I've written some very detailed replies in past few weeks, if you search for them there may be some useful info.

If you're in UK, have you read/looked at

1) BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

stichtingb12tekort.nl/weten...

2) Pinned posts on this forum, i found fbirder 's summary Of B12 documents helpful. Link to summary in third pinned post.

3) BMJ B12 article

bmj.com/content/349/bmj.g5226

4) BNF chapter 9 section 1.2

evidence.nhs.uk/formulary/b...

5) B12 deficiency info website

b12deficiency.info/

6) Book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by martyn hooper

7) Book "Could it Be b12" by Sally Pacholok and JJ. Stuart

A neurologist might be very helpful. They could do a "romberg test" and check for "proprioception problems" although my experience has been that not all neuros have a good understanding of B12 deficiency.

I am not a medic just a perosn who has struggled to get a diagnosis.

[MandyPandy in reply to Sleepybunny]

Hi Sleepbunny yes I have spoken to Martin at PA and am a member. I really thought I had a small victory with the weekly injections but only had one as the hematologist said I was in range (as Dr and Hematologist have exchange a letter), have spoken with the practice manager and she said they would not go over the advice of the hematologist so my only hope is the neurologist on Tuesday. I had the intrinsic factor test but it came back normal. Also a lot of my blood tests are coming back normal as well other than B12 initially. I have had may operations and stuff in my life but I have never felt so ill as this, normally I am a person who just carries on no matter what but the mind is willing but the body is not currently.

[clivealive Forum Support]

In view of your family history have you been tested for P.A.?

[MandyPandy in reply to clivealive]

Hi yes I have spoken to Martin at PA and am a member. I really thought I had a small victory with the weekly injections but only had one as the hematologist said I was in range (as Dr and Hematologist have exchange a letter), have spoken with the practice manager and she said they would not go over the advice of the hematologist so my only hope is the neurologist on Tuesday. I had the intrinsic factor test but it came back normal. Also a lot of my blood tests are coming back normal as well other than B12 initially. I have had may operations and stuff in my life but I have never felt so ill as this, normally I am a person who just carries on no matter what but the mind is willing but the body is not currently.

[Polaris]

I'm so sorry you're having such a frustrating time after finally getting a diagnosis.

Very few GPs or specialists understand the complexities of PA/ B12 deficiency and it might be a good idea to join the PAS, if not already a member, as Martyn Hooper could probably help in getting injections reinstated/increased.

Your B12 was very low and, with family history and serious neurological symptoms, should have been be treated with more injections as defined by the BNF 'alternate days until no further improvement' to avoid irreversible damage.

It is also important for GP and specialists to note that, once b12 treatment is started, blood levels are not reflective of how effective the treatment is - it is the clinical condition of the patient that matters:

cmim.org/pdf2014/funcion.ph...

The above BMJ research document is supported by many research papers and states (bottom of page 4 under 'How is Response to treatment assessed' ) :

"Cobalamin and holotranscobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment, and retesting is not usually required."

This might also help convince :

stichtingb12tekort.nl/weten...

"Conclusion: A vitamin B12 deficiency can cause many different symptoms, among which are serious neurological problems. The treatment with high dose B12 injections is not only completely safe but fortunately also very effective. With the right treatment patients can recover completely. Starting straight away with treatment is essential, as is the continuing treatment in order to give the body enough B12 to fully recover

stichtingb12tekort.nl/surve...

"After a year: The need for quick and correct treatment is emphasised further by the fact that after a year of treatment only 4 % of patients are fully recovered. Fortunately half of the patients have experienced a lot of improvement in their symptoms after a year of treatment but there are still a lot of patients with remaining symptoms, who could possibly have recovered if their treatment was started promptly and adequately."

Very best wishes for better treatment......

[Foggyme Administrator]

Hi MandyPandy. I'm really sorry that you're feeling so ill and struggling to get the treatment you need. Unfortunately, it's something we read hear far to often.

Many GP's (and consultants - like your haematologist) are ill-I formed about B12 deficiency - as you are finding out.

Many have never heard of the neurological regime of B12 injections for treating B12 deficiency (after the loading doses - every other day until no further improvement - sometimes for many months (as others here have pointed out).

As you recognise, your B12 level is very low for someone who has been receiving B12 injections and your GP and haematologist are making the mistake of thinking that because your level is now considered to be in the 'normal' reference range, that you do not need more frequent B12 injections. Wrong.

Again, as others say, the level of serum B12 in the blood is no indicator of the efficacy of treatment. Once B12 therapy has started, all the guidelines state that testing B12 levels is no longer required (unless looking for low levels - which yours are considering your injections). If you are still having symptoms - especially neurological ones - this is a sure fire indicator that you need more frequent B12 injections. You need the neurological regime of treatment.

Your doctors may argue that you have tested negative for PA so that regime does not apply to you (if they have heard of it). Again, is is wrong.

First - a negative IF test does not mean that you do not have PA since it gives a false negative in about 50% of cases - you can test negative and still have PA (highly likely as PA runs in your family).

Second - whether you have PA or not is a moot point - PA is damaging because of the B12 deficiency it causes: B12 deficency can be caused by a number of things: the treatment for PA and B12 deficiency is the same: B12 injections.

Third: medics mistakenly think that PA (and the B12 deficiency it causes) cannot be present in the absence of macrocytic (large red cell) anaemia. Wrong. 30% of patients present with B12 deficency and neurological symtpoms long before this develops.

The most important thing in assessing the efficacy of treatment and the required frequency of injection is...symtpoms. If you are still having the symtpoms of B12 deficiency, or your symptoms are returning before your next injection is due, then you need more frequent injections. But you know that 😄.

So...what's the best way to prepare for your neurology appointment...

I'm going to put in some links below (some of which may have been posted already - apologies - don't have the time right now sort through them).

Print the papers off, read through them, and highlight anything that applies to your case (focus in particular on neurological symptoms / treatment). Take these along to your appointment and be prepared to read through the consultant (remember, you're paying a lot of money for this appointment so,you should be in the 'driving' seat).

It's a good idea to make yourself a simple bullet point list of all the things you want to go through - good way of keeping on track and making sure you're able to say everything you want to say.

It's also a good idea to take someone with you if you can...even consultants are more attentive (and potentially less hostile) if there's a witness in the room. Sad but true. Even better if that person can read and understand your information and step in to support you, if necessary.

It has to be said that there's no way of knowing how knowledgable your neurologist will be about the treatment of B12 deficiency. The main thing you will have to try and 'prove' (using the evidence from the links I'm attaching) is that a) B12 deficiency with neurological symptoms requires intensive B12 therapy (the neurological regime of injections) and b) that serum B12 levels are no indicator as to the efficacy of treatment and c) all the guidelines say treat the symtpoms, not the serum B12 blood levels (and remember, yours are very low considering you are already having injections).

So...here are the links:

Oh dear...the links will not copy so...I'm going to post this reply...go back and re-copy the links and post them in an additional reply.

Very best of luck,with your appointment (but how bad that you've had to pay for a private appointment 😖), let us know how you get on, and post again if you need any further advice. 👍

Links to follow...

[Foggyme Administrator]

And here are the links:

evidence.nhs.uk/formulary/b... (BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

onlinelibrary.wiley.com/doi... (British Society for Haematology (BSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)

onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord)

stichtingb12tekort.nl/weten... (Problems with Serum B12 Test)

stichtingb12tekort.nl/weten... (Testing B12 During Treatment)

stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to Know Before Seeing GP)

stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

Good luck 👍

[MandyPandy in reply to Foggyme]

Thank you very much for all the information that you have provided.

[kirsten555]

I'd just self-inject - that's what I'm doing now, after being told I can only have B12 every twelve weeks. I was terrified at the thought of doing it, but honestly, the subcutaneous injections with a small needle are so easy and straight forward, and each injection, including the equipment needed, works out at less than £1. I also love the feeling of being in control of my health again! Good luck!

[Gambit62 Administrator]

MandyPandy - have you been back to PAS and Martyn to update them on the interaction between your GP and haemo and the outcome from that? - may be that they can raise issues with the haemo - as its quite well established that what is normal range for someone who isn't being treated for B12 deficiency is quite different from what is normal for people who are being treated for absorption problems.

[MandyPandy in reply to Gambit62]

Hi Gambit62, yes I spoke with Martyn this morning and he was very helpful in giving me some advice. Hopefully I will get some positive results when I speak with the Neurologist on Tuesday.

[cc120]

Thought this would be interesting for you : 'Different types of B12 - which is best and why?

' healthunlocked.com/pasoc/po...

PM me if you would like a hydroxcobabalmin source and for methylcobalamin go to b12d.org/ which is also a b12 deficiency support group website, with lots and lots of good info.