Help needed - doc says tests not available on NHS, stopping my B12 - no treatment plan offered - help!

[Mrs_Somerset]

Hi,

I was diagnosed with PA about 3 months ago - turns out my B12 was low (103) since 2011 and doc did nothing about it, now 65 and neurological issues.

I have been having B12 shots every other day ( after much battling with the doc) for 2 months now, nurses let me do some at home, well my hubby does tham as I shake too much, with one appointment a week in the surgery so that they can keep an eye on my progress.

I asked for homocystene and transcobalamine tests as I am not sure I am absorbing the B12 shots, and the doc told me that I cannot have these ont he NHS.

I asked him how else he was going to see if the B12 was effective, and he said he was going to stop giving me B12 as I must now be full.

I asked him how he can be sure - he said he asked a neurologist on a course he had just been on, and was told I had had plenty of shots and now only needed them once every 2 months.

I do not understand.

My symptoms have not gotten any better. He has not examined me to check any improvement, in fact when he last saw me he asked for an urgent referral to a neurologist ( finally after 6 months of battling him and a letter from my physio and my opthamologist requesting URGENT neurological examination)

how can he stop the injections and not book any appointments to see me or offer any kind of treament plan for my symptoms ( now so bad I cannot walk - am in a wheelchair or confined to bed - jsut to give context - before these issues I was in a physical job, dancing, doing martial arts, mentally quick etc - now cannot walk, cannot wash my own hair, had to have my lovely long red hair cut off as I could no longer brush it, am in pain all day, every day)

can someone please help - -what am I supposed to do now?

Is he just saying it is not B12 and stopping treatment so that he is not in trouble for not treating me for 3 years?

I am not trying to sue him - I don't understand.

any help or advice welcome - at the end of my tether.

[Gambit62 Administrator]

The NICE guidelines actually state that you should have injections every other day until such time as your symptoms stop improving.

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

It may be that because you aren't showing any improvement they feel that is all that can be done - though I'm not saying that is the right answer.

Have you tried ringing the Pernicious Anaemia Society and speaking to someone there - they may be able to provide you with support

pernicious-anaemia-society....

[Gambit62 Administrator in reply to Gambit62]

If you want to source B12 yourself you could look at this post - some suggestions of places to source it.

healthunlocked.com/pasoc/qu...

[Mrs_Somerset in reply to Gambit62]

Hi Gambit, yes I have called the PAS society and left a message but I think they are all on training at the moment.

[Gambit62 Administrator in reply to Mrs_Somerset]

Sorry about that - hope they get back to you soon.

[Mrs_Somerset in reply to Gambit62]

Hi Gambit62,

it is not a problem, really - actually I am rather impressed that they had an answering system to allow us to leave messages for them!

since I joined the PAS I have had really good advice and help from their forum on their website and here, so have not had much need to call them, - and again here I have had lots of useful info on this forum in response to my query.

This time, as you suggested, I think I do need their direct advice on what to do moving forwards, but am happy to wait for the training to be over - another fab thing to know that the society support team do have regular training

P.S. - as I was writing this, missed a call from them!

[Hidden]

It can take a long time to repair any damage, years, particularly neuro. Doctor's usually bottle it after a while and flip us back to 2 or 3 monthly injections, because they think recovery should be instantaneous. Neuro's are often no better. As soon as my GP did this I started self treating, I dread to think where I'd be now if I'd relied on the NHS.

There are lots of things you need to optimise to get the best from the jabs - folate, iron, vit D, magnesium, potassium, zinc etc. And if you also have a thyroid condition (can't remember if you have?) you need to monitor that closely because the B12 can result in you needing to reduce your thyroid meds.

Another thing to consider is using a different form of B12 to see if you do better, for example methylcobalamin rather than hydroxocobalamin. It's trial and error.

I would really recommend this Facebook group for support:

facebook.com/groups/1749289...

H x

[Mrs_Somerset in reply to Hidden]

Hi Hampster 1,

a font of fabulous info as always

yes I have reduced my thyroid meds from 150 to 100 a day, although this may also be due to the great advice on the thyroid UK HU forum, where I was informed that I should be taking it without food, and at least 4 hours away from calcium fr iron ( that is why evenings are best) - this is the opposite of what my doc had told me 15 odd years ago when I first started taking it.

I do take zinc, selenium, magnesium, folate, and also a B12 complex tablet each day, thanks to all the advice here and other HU forums ( thyroid and Fibro) I know what kinds to take also.

my last blood test came back with Iron towards the top end of norm, so although I have bought iron tablets, I have not taken them yet.

My husband is looking at getting me some methylcobalamine sublinguals to try, I have read good things about these - but unfortunately they only seem to be available in america.

I just cannot understand what my doc is doing, or what his thought process is, as I am not better, and no other treatment has been offered. He has also cancelled my referral for Fibro testing - which is terrible as I was already waiting 4 months to be seen and when they decide to do it again, if they decide to do it again, that means I go to the bottom of the waiting list.

[Hidden in reply to Mrs_Somerset]

You can get methyl sublinguals in the UK, from Amazon the Jarrows 5000mcg or 1000mcg:

amazon.co.uk/Jarrow-Methylc...

amazon.co.uk/Jarrow-Methylc...

But with your symptoms I think you might want to consider injectable methyl:

oxfordbiosciences.com/vitam...

And this link says what supplies you'll need (it comes in powder form and needs to be mixed with saline), scroll down to the bottom "Supplies":

oxfordbiosciences.com/resou...

H x

[B12Turbo]

Hi Mrs Somerset

Sounds like you need to change your GP for a start. Hampster is correct as always in stating that Methylcobalamin rather than Hydroxocobalamin is reportedly better at healing Neuro problems, one of its main features is stated as being its ability to repair the Myelin sheath on the nerves, well worth a try, but don't expect overnight success. HoloTC testing is available at Guys Hospital, with a cost of only £18 plus £12 for package and special postage. ring Denise O'blein on 0207 188 7188, she will explain all.

Oh! be sure to state that you are receiving B12 shots at the moment.

Good luck, hope you find the answer very soon.

[Mrs_Somerset in reply to B12Turbo]

B12 Turbo - thank-you

sorry at first I thought it was info on methylcobalamine in the UK - I would like to put it down to the brain fog, but not sure why I misread your post lke that.

I have sent the info to hubby - as talking is difficult for me - he has been booking the private tests.

Thank-you for the info, very useful, even if I am going slightly mad

[nobodysdriving in reply to B12Turbo]

but what is the point of testing holo B12 when she's injecting every other day? it won't tell you if you are 'cured'. I have been injecting daily for a very long time, my holo B12 is OVER range, the haematologist tells me I am 'replete' and therefore I cannot be in need of daily injections, however if I space them out my neurological problems come back quite quickly (brain fog and lack of memory are the first to come back, even 2 days post an injection, then tinnitus depression and parasthesia if I go longer! all with an holo B12 over range!)

[B12Turbo]

Your not mad, simply having a few problems at the moment, which with a little help, you will soon see an end to. Glad to hear hubby is booking tests, in the end, you will find the proper medical / scientific way is the best route, the problem is, who one goes to to get good advice ????? Best wishes to you both. B12 Turbo

[B12Turbo]

Hi Mrs. Somerset.

Just to let you know that although there appears to be a great many differing views, I think it's Denmark and Sweden that have highlighted that Methylcobalamin being taken by people with Amalgam fillings in their teeth, are in danger, due to the fact that a Methyl molecule is added to the Mercury which leaches into the blood stream, thereby creating Methyl Mercury, which is the most toxic form of Mercury and it is absorbed into the blood much more easily. Many however also state that Amalgam fillings are totally safe. TAKE YOUR PICK ?????

Denmark and Sweden I believe are banning Amalgam fillings, along with one or two others.

[Mrs_Somerset in reply to B12Turbo]

Hi B12 turbo,

Thank-you for the info - very interesting

it is so strange - I never had any fillings until I had my first child, and apparantly it is normal for the foetus to steal your calcium, but they put in the amalgam fillings, - and the year after they stopped doing them

just my luck - they are such a pain, a possibly the cause of the heat and rash after my MRI too - oh well - I think I would rather not have to go through having them taken out though