Proof 3 monthly injections don't work??

[Portia1974]

Earlier this year I obtained my medical records. This enabled me to view blood results over an extended period and in relation to treatment (and lack of treatment!) that I had received over the same period. I plotted my blood results for various parameters using excel. And to say patterns began to emerge is an understatement!

The image shows my results for RDW plotted over a 4 year period. Starting when I was first diagnosed with B12D in 2014 (level of 109); given loading doses, told I was "cured" and to just take oral supplements, followed by a fall in my levels to borderline again; a second round of loading doses when they conceded I couldn't absorb orally, and finally when I was moved to 3 monthly injections.

Throughout this time, and still now, Drs have been insistent that when my serum b12 is above range (as it is currently), that my b12 problem is resolved any any symptoms (haematological or otherwise) MUST be down to something other than B12D as there is plenty of b12 in my system as evidenced by my serum b12 results (Obvs we know that's rubbish!).

My argument to them for the past 4 years has been that I may have plenty "in my system" but it's not working. My neurological symptoms get worse and my fatigue has become near disabling.

What is clear to me from this chart is that when I've had injections at a loading dose frequency (ie at least twice weekly) there is clear haematological improvement. Stop those injections, or give them at 3 monthly intervals, and my RDW begins to elevate again!

So essentially, irrespective of what my serum b12 says, it's clear to me that I need more frequent injections.

It also occurs to me, that since haematological changes are often the last to manifest (as it seems that the body prioritises the production of blood above other functions) then how advanced might any nerve damage be??!

Last week I put this under my GPs nose. I asked her if she was prepared to increase the frequency of my injections as clearly, even from a haematological perspective, 3 monthly is not enough. She has sought specialist advice and has been told I need to see a neurologist to assess my neurological symptoms first.

I am under a neurologist for my epilepsy. I was due a 6 month follow up last month. I wrote to her in May describing my symptoms in great detail and asking for the date of my follow up. No response to date. My GP wrote to my neurologist in July. No response to date. So....I've been reporting these symptoms for 4 ears. Made two attempts to raise these directly with my neurologist in writing and neither letter has even been acknowledged nor do I have a date for my now overdue 6month follow up.

Have informed my GP I am no longer prepared to wait for the NHS to get their arse in gear and have no faith that even once assessed I will be treated properly. Have told her I have ordered my own supplies and will begin self injecting as soon as they arrive according to the BNF guidelines for B12D with neuro symptoms. She's asked me to come in and see her next week. Not sure if it's to teach me how to self inject or talk me out of it, or tell me that she's prepared to increase my frequency, lol! We'll see!

But honestly, just thought people would be interested in seeing this. Visually. That frequent B12 injections had a demonstrable effect on me haematologically, and 3 monthly injections are demonstrably not enough.

(Incidentally one GP had no idea what the RDW was telling him. Told me they only look at MCV. My MCV is always in range. But I have iron deficiency alongside B12 deficiency. In that instance, or so I've read, the microcytic (iron deficiency) and macrocytic (B12/Folate Deficiency) cells can balance eachother out to deliver a false normal MCV. He had no idea what I was talking about when I raised this with him).

[fbirder]

Very interesting!

I was worried about using RDW to track your haematology. Until I read your final paragraph. If your iron deficiency results in consistent microcytosis then RDW should be a good measure of macrocytosis.

I hope the GP is sensible about your injection frequency. Two things to hit her with...

If you’ve got neurological symptoms then the BNF says you should be getting 8-weekly injections.

The BCSH (British Committe on Standards in Haematology - the biggest brains in blood) say...

The clinical picture is the most important factor in assessing the significance of test results assessing cobalamin status because there is no ‘gold standard’ test to define deficiency.

And

In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment.

Full document is here onlinelibrary.wiley.com/doi...

[Portia1974 in reply to fbirder]

Thanks for that. Yep she's had the motherload of links and documents from me. In all honesty I think even the good GPs are so in fear of overstepping their remit that they will defer to "specialists" and let them make the call rather than initiate at a primary care level. She's overall very good and I can have an adult conversation with her. And largely she agrees with everything I'm saying and is sympathetic regarding my frustration. I think she sincerely wants to help, but lacks the cahoonies to act independently of a specialist. We'll see what she says next week. I'm done waiting though. Medisave stuff has arrived. Just waiting on the hydroxy. Had my last injection with 5mg methylfolate (first time I'd done that ). What a difference! It's like I woke up for 2 or 3 days...then bam. That, and the RDW response to loading doses has sealed the deal for me. Sod em.

[Frodo]

I think it would be interesting to show this to Martyn Hooper at the PAS and hear his thoughts. I believe he has a GP with special interest in PA on his team who should be able to give an informed opinion.

Have you thought of sending it to the PAS? I don't think they will necessarily see it posted here.

[Portia1974 in reply to Frodo]

Possibly. Have forwarded the link via contact form on their website and now tagging PAS-admin

[KimberinUS]

have you considered that you might have h pylori? it is a known cause of b12 and iron deficiencies. i have found many people, my mother included, have false negatives with the stool testing but the breath test works.

btw, your graph is excellent!!!

[Portia1974 in reply to KimberinUS]

Negative for h pylori. But that was stool. Have asked about the breath test to no avail. But have a new gp so may try my luck again! Thank you! Didn't realise the stool test was unreliable!

[Cb1963]

Interesting I had the gut bug h pylori and ended up with an internal bleed a couple of years ago, and feel like I've ended up getting a double whammy, as I'm now on life time omeprazole and I believe this can affect absorption, and after getting the initial 5 loaded doses and then going onto a 3 monthly cycle, just 2 weeks after my last injection I feel like this has already worn out, chronic headaches and more muscle spasms,so I'm still learning and a bit hesitation involved wether a trip to the doctors will give me a better idea wether the top ups are n working, ta

[Portia1974 in reply to Cb1963]

It might be worth getting hold of your medical records and reviewing your blood results before and after your loading doses. Perhaps a similar pattern will emerge? It certainly swayed my gp when I showed her this. Worth a look I'd say.