Advice needed re GP / B12 injections - Pernicious Anaemi...

Pernicious Anaemia Society
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Advice needed re GP / B12 injections

3doorsdown
3doorsdown

Hi, I am also a member of Thyroid UK which is great, thought people on this forum may be able to help me too. I live in Northamptonshire (UK). I have been receiving B12 injections for pernicious anaemia which I was diagnosed with around 18 years ago. My latest blood test last week shows B12 at 688 (range is 180-914). I went to see the nurse at my GP practice for my regular three month injection to find that my appointment was with GP instead and that he said I didn't need the injection as my B12 was in range. He asked how my diet was and told me to keep taking vitamin tablets. When I questioned him about my original diagnosis and that I thought it meant I was unable to absorb naturally and that surly my B12 would be expected in range as I have been receiving injections, his answer was every ones absorption rates are different. I asked him if how this will be monitored, he printed off a blood test request for six moths time. Does anyone have any suggestions, my TSH is also higher than Thyroid specialist state it should be at 3.02 (range 0.35-5.50) for someone who is being medicated but my GP said this is normal and therefor my 50mg of Levo will also remain the same. I have been under treatment from Ortho consultant for frozen shoulder .. physio suggests there's no reason for this other than link to my thyroid condition (also have carpal tunnel syndrome in both hands) plus various other unexplained leg, arm, hip or other joint problems over the years. So I guess my question is is this all ok and if not, how should I go about seeing a specialist/going private. Thank you so much in advance.

15 Replies
oldestnewest

Yet another GP who does not know what he is doing, and not following the NHS Guidelines.

Check the Pinned Posts on the right side of this page for more information. Quite a few people on this site have Thyroid problems and PA and will be able to advise you and others will give you links to the NHS Guidelines.

I would not go 6 months without injections.

Thank you, as a patient I’m left unsure of what I can do next, my GP has been ok in the past, I wonder if they’re being pressured to reduce medications. I understand I’m entitled to a second opinion but not convinced that will get me anywhere, as neither will changing GP practices I would imagine, why do we get such poor service!

You could print out the BHS Guidelines for treatment of PA to give or (throw at) your GP.

My GP said "we don't do that" when I did.

So I had much the same treatment from the GP as you. "You are in range now, we will retest in 6 months."

What I did was to go to a private GP for injections as I was new to all this and then started self injecting, which is not a problem. Help for finding supplies etc. are available here.

B12 ampoules are incredibly cheap . I have to self inject because although I have a diagnosis of PA , I can only get an injection every 12 weeks , and symptoms return long before that . PA patients should be on injections FOR LIFE . Your B12 readings have no significance at all. NO BLOOD TESTS FOR B12 NEEDED . It’s all in the guide lines which your GP obviously hasn’t read . . Read all the pinned posts , print out , and send them to your GP with an accompanying letter .

I know how cheap an injection is — just over £1.00- everything included . I buy in bulk —100 of everything at a time , ampoules , needies ,syringes , swabs . The NHS must be able to purchase even more cheaply than that . But there are no big powerful pharmaceutical companies involved...,,,............ ..............................

Don’t get fobbed off . Fight your corner whilst you still feel well . You will decline in health when you stop getting your injections.

Thank you so much for taking the time to reply. Are you able to post here where to get the B12 kit from you mention, or private message me? I'm not very tech savvy so not sure how forum rules work here!

Can you scroll back till three days ago when I posted information on how to obtain B12 ampoules from German online pharmacies . That is what many PA patients who cannot get enough injections do . It’s easy to find . If you intend to self inject if your GP will not listen . You need to decide how you would self - inject — into your thigh muscle (I.M.) ot sub-cutaneously just under the skin . You can get information by googling . You can also see videos of self -injecting ( some are poor. So watch plenty . I’m in a rush at the moment - sorry Christmas is bearing down .Needles , syringes , swabs and sharps-disposal boxes are obtainable at Medisave.co.uk and Amazon.uk .

I’ve been doing this for 3years , weekly . It’s changed my life . Sorry I have to dash . I will get more time soon !

Thank you. After reading the replies people have kindly posted I have decided to go down the route of asking for a second opinion. I have been told by my GP's receptionist this can be done in writing, which will then go to the practice manager ... the downside of this is that for my GP practice, the practice manager is the wife of the GP, of well worth a try!

Just to update on my original post - My GP's receptionist has today issued me with a printout for a referral to a hospital department called 'General Medicine' the GP receptionist said this was for a 'review'. The NHS online booking process does not allow you as a patient to know the person who you will seeing, but I will look into this by telephoning the hospital to make sure I can make the best of the appointment as at the moment, nobody was able to explain what general medicine meant. Best wishes all .. I'll update more as things go on.

Yes it’s much better if you can get the injections you need from your GP. But at least , if you don’t succeed , you know what to do ! We will always be here for you ! Very best of luck 🍀🍀🍀

Foggyme
FoggymeAdministrator

Hi 3doorsdown. Your GP is wrong (as you know).

Once PA is diagnosed, treatment is for life. And once treatment is commenced no further testing of serum B12 levels is required (the BSCH guidelines for the diagnosis and treatment of cobalamin and folate deficiencies - link attached attached below).

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

onlinelibrary.wiley.com/doi... (BritishStandards in Haematology (BCSH) Guidelines for the Diagnosis and Treatment of Cobalamin and and Folate Disorders). Including B12 Deficiency / PA Diagnostic Flowchart.

And the British National Formulary (BNF) - GP's prescribing guidelines - clearly states that the treatment for B12 deficiency caused by pernicious anaemia is B12 injections (Hydroxocobalamin) every 2-3 month. Here's a link to the BNF (your GP will have a copy of their desk):

bnf.nice.org.uk/drug/hydrox...

(BNF PA / B12 Deficiency: Hydroxocobalamin Treatment Regimes)

It's not clear when your last injections was in relation to your blood test but notwithstanding, a serum B12 level of 688 is actually quite low for someone on injections, as you rightly recognise. 'Normal' levels no longer apply for those having B12 injections (levels should always be high - and can be way over the top of the reference range (mine are always over 2000).

In addition, all the guidelines state that once injections have been commenced, serum B12 levels should not (cannot) be used as a marker to determine further treatment requirement...and most certainly not to restrict or stop injections once PA has been diagnosed.

So...your GP is wrong to stop your B12 ...and goodness only knows why he's wittering on about absorption rates (those with PA are unable to absorb B12 from diet)! Again, as you know.

Stopping your B12 injections means that your B12 levels will inevitably drop and you will become increasingly ill ...and symptoms may re-occur long before levels drop down below the bottom of the reference range.

Some options:

A) see another practice GP who may have more appropriate knowledge about the treatment of PA and ask to have your injections re-instated (as per all the guidelines)

B) Direct your GP to the Pernicious Anaemia Website - there's an information leaflet for medical professionals which clearly states that treatment is for life (no further testing etc (or print if off and take to show your GP)

C) Print the information in the links above, highlight what is relevant to your case and take to show GP - and ask to be treated according to the guidelines

D) write a formal letter to your GP, include the guidelines (and the PAS medical professionals' information) and ask to have your injections re-instated as per the 'lifetime' treatment guidelines (and imperative) for those with PA.

Or...if you can't face a battle with ill informed and potentially 'hostile' GP's you could telephone the Pernicious Anaemia Society helpline and as Martin Hoooer to intervene on your behalf (though you have to be a member to acces this service - one year membership is relatively inexpensive). They are seeing an increasing number of cases where GP's are stopping B12 injections for those with PA and the PAS has successfully intervened , in many cases, to get B12 injections re-instated.

About the joint 'stuff' - PA is an autoimmune disease and these often arrive in clusters, so it's possible to have more than one autoimmune condition simultaneously (also just wondering if your under active thyroid is due to Hashimoto’s another autoimmune condition). So...there's a possibility that your joint issues (and perhaps other symptoms) may be due to another underlying and undiagnosed autoimmune condition (RA, CTD, Lupus etc.).

So...worth asking your GP to test auto-antibodies, CRP, ESR and rheumatoid factor to see if anything else is going on. If any of the tests are positive or raised, then referral to a rheumatologist would be necessary for further investigations and more specific antibody tests.

The frozen shoulder and joint issues ring a bell with me - I had these (and a host of other symtpoms over the years, that I had not 'connected' ) prior to being diagnose with an underlying autoimmune condition...so worth checking out, just in case.

About the thyroid -sorry, bit of a thyroid dunce so can't help with that. There is a thyroid forum here on HU so might be worth posting on there to see if they can offer advice...they're all very knowledge and helpful (sorry, can't fetch the link - if I leave this page my reply to you may disappear...never to be seen again 🤨).

So...good luck with getting the injections re-instated...post again if you need more help and let us know how it goes.

👍

3doorsdown
3doorsdown
in reply to Foggyme

Thank you so much for taking the time to reply. I am favouring the idea of putting in writing that I would like a second opinion, at this stage without really going into details why. My GP practice has only one GP and a nurse .. so having since spoken with my closest hospital, they have given me the name of their Endo, who the referral would come through to if the GP refers of course. If this doesn't work then I will raise it more formally and look to change practices ... if that doesn't work the Endo's secretary explained that it is hoped around March time the Endo mentioned will also be treating private patients, so at least then I could self-refer if I'm still having problems. My original PA was so long ago I don't have blood test print outs unfortunately. The printouts I do have go back to 2011 .. Re antibodies these do not show any tests for CRP ... ESR always tests as 2mm/hr - last tests in 2011 and 2016 (range 3-9). Not sure if this is relevant but my Serum Creatinine in 2011 was tested as 68 ... 61 in 2013 and 47 in 2016 (range 60-120). So thanks again for all your help. I'll re-post how my second opinion attempt goes!

Foggyme
FoggymeAdministrator
in reply to 3doorsdown

Hi 3doorsdown. Endocrinologist will be okay for your thyroid issues but they don't treat PA and will unlikely to know anything about it (unless they have a special interest outside of their specialism, and that's unlikely). So they will not be able to help you get your B12 injections re-instated.

So you'll have to progress this with your GP - best done sooner rather than later because if you do have PA then things will go downhill quite quickly without regular B12 injections 🤨.

Another thing to be aware of...if you do down the private route, a private consultant (or NHS, for that matter) can offer advice to your GP, but your GP has no professional obligation to accept or follow that advice (some do, some don't). So can be tricky and not always bring a successful outcome. (Odd and maddening when a GP refers for a specialist opinion and then chooses to ignore it, but it does happen).

About antibodies/CRP etc - these can rise and fall quite quickly depending on disease activity so 'normal' results in the past can not rule out current disease activity. Think if I was you, I'd ask to be retested if you’re feeling unwell or have current unexplained symptoms (though having potential thyroid issues / symptoms might make it difficult to tell). Again, an endocrinologist cannot advise on these issues - it would have to be GP first and then referral to a rheumatologist, if necessary.

Certainly, you shouldn’t have to ask for a consultant opinion in order to get treatment for your pre-existing PA. GP would be the primary 'carer' for this with referral to a gastrologist (for ongoing or unresolved gastro-intestinal issues) or a neurologist (for ongoing or unresolved neurolgical issues).

If you don't feel like battling with your GP to get your injections re-instated, might be a good idea to ask the PAS to intervene on your behalf.

Negotiating the system and dealing with ill-informed doctors can be very tricky and frustrating...so very best of luck. Hope all goes well. 👍

3doorsdown
3doorsdown
in reply to Foggyme

Thankyou, that’s helpful to know, I thought Endos also considered PA ... in that case think I’ll try a whole new GP practice!

Foggyme
FoggymeAdministrator
in reply to 3doorsdown

Yep...sounds like a good plan...but be prepared that a new GP may be no better...though we all live in hope for that!

Some good ones out there but we rarely here about them here because happy treated patients have little need to end up here 😉😀.

I also have an underactive thyroid (125 levothyroxine for the last 10 years) and last year was diagnosed with pernicious anemia. At the time my B12 was within the normal range but towards the low end and I had lots of symptoms. I went armed with lots of info about B12/PA and the doctor checked for antibodies (can't remember if they were intrinsic factor or parietal cell antibodies) and these were found to be present. He was then happy to prescribe B12 injections. I know that guidelines say doctors should look at the symptoms - not just the levels and I know that if you start on B12 treatment it should not be stopped. Doctors usually deal in numbers though and generally do not seem to aware of autoimmune conditions. Try asking for an antibody test, it might make things more black and white for him.

3doorsdown
3doorsdown
in reply to cd72

Hi, thanks for the tips. As my PA diagnosis was around 17 years or so ago I can’t rem if antibodies were tested then, I just recall, symptoms, diagnosis & treatment. Thanks again.

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