Update re my gp letter

[Kenbowns]

Just over 2 weeks ago I submitted my letter with all the supporting documentation to my gp and practice manager, this appeared to have been placed within a 28 day max procedure.

In the meantime I have harassed the practice manager, the gp has also been off work ill (no others available just locums ), yesterday the practice manager called me to say that the gp was in touch with a Haemotologist and that they would like another blood test from me, at which point I exploded and vented my spleen upon the poor woman, it is unfortunate for her that she is the ' go between '

I have explained to her times many the urgency of reinstating my b12 shots to prevent any permanent neurological damage . I also told her that the guidelines say that any further serum b12 assay is irrelevant and to treat the clinical symptoms which are many and includes arrhythmia and sight disturbance.

Following a lengthy discussion and in the interests of trying to move this forward I reluctantly agreed to the blood test on the proviso that she wrote on my notes that I was doing this under protest as it was against the guidelines and that any time that was wasted could potentially harm me.

I know deep down that the Haematolgist is probably going to agree with the gp that my serum b12 levels are ' dangerously high '

I would change my gp to another practice but at this stage I do not feel that I have the time nor would I have any confidence that they would treat me any differently.

In the meantime the numbness in my hands, feet and face progress.

Just to recap, I do not have a definite diagnosis of PA and therefore Martyn is unable to step in.

I may have asked this before, considering the loading jabs and supplementation would a private MMA and Homocystene test be useful, I seem to recall another one of our members had some success with this in spite of elevated b12 levels ?

[Polaris]

Hi Kenbowns

I can fully sympathise with your frustration over further blood tests as this has been an ongoing problem with treatment for my sister with severe B12 deficiency. GPs and specialists still refuse to recognise that her severe symptoms are down to B12def. because blood levels are still high after previous injections. 😤

I'm not sure if you will have already sent them this BMJ research document but, even if you have, GP has not read or understood, so might be worth writing or emailing again. It also has a useful summary and other information about tests and treatment :

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

Bottom of page 4 under 'How is response to treatment assessed' :

"Homocysteine or methylmalonic acid should normalise during the first week of treatment. Failure to do so suggests an incorrect diagnosis, unless renal failure or other causes of increases in the metabolites coexist. Cobalamin and holotranscobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment,24 and retesting is not usually required"

Also:

stichtingb12tekort.nl/surve...

" 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."

stichtingb12tekort.nl/weten...

Conclusion:

A vitamin B12 deficiency can lead to serious neurological, cognitive and psychiatric symptoms. Delaying treatment can have devastating effects. Physicians should be aware that neurological damage can occur before anemia develops, and consider a vitamin B12 deficiency when neurological and/or neuropsychiatric symptoms are present, with or without the presence of anemia. The cost of testing for a possible B12 deficiency and treating the deficiency when present, are low. The benefits of an early diagnosis are potentially enormous, and not just financially."

[Kenbowns in reply to Polaris]

Hi Polaris thanks for your reply.

I did indeed include the BMJ document in the gp letter.

I think what no logically minded person can understand is that all the help and guidance is right there in front of their eyes, it is perfectly clear what my treatment should be and yet they choose to do completely the opposite and work from an assay that they have been told is irrelevant following loading doses.....there is nothing for them to be afraid of, the guidelines are referring them to UK licenced treatments.

I was provided with a link to a UK court case where someone had successfully sued for damages in these circumstances and it crossed my mind whether to include this in my letter but as I have been with this practice all my 61 years I thought it best to not include legal threats in the first instance.....it remains an option for the future.

Back to my op then, is a MMA and Homocystene test worth doing at this stage as the BMJ document suggests that if the diagnosis of b12 deficiency was correct then these should have normalised within the first week.....is that how you read it ?. if they are still high, the diagnosis could be wrong .

[Polaris in reply to Kenbowns]

All unbelievably frustrating I know..... In my sister's case, if it was up to me, I would, at the very least have been making more complaints to surgery and NHS. I did write to our MP, who was very sympathetic and passed it on to JH, the Health Secretary, but was just fobbed off with 5 pages of gobbledygook and referred back to NHS England. There have even been questions asked in the House of Lords about neurological damage incurred by GP s failure to treat with B12 injections, but nobody seems willing or able to change the system.

We eventually had to resort to sourcing B12 from Germany for injections and I would advise this rather than waiting too long as, with the short window of opportunity and battle fatigue, things can go downhill very rapidly.

Re. your last paragraph, yes - that's how I read it too.

I'm frankly not sure you'd get a test done for MMA, as it is a high cost test and, as you've understood, better done before B12 injections have begun or to confirm diagnosis.

The other option is an IF test but, even this is only 40/50 % accurate, and you could still have negative antibody pernicious anaemia – NABPA.

I'm truly sorry you are having to go through all of this. The only consolation is that you are not alone and there are some marvellous people out there plugging away at educating the medics.

[Kenbowns in reply to Polaris]

Thanks Polaris

Unfortunately some of my neurological symptoms are over 12 months old now.

Deep down I know I will have to SI but this is very much out of my comfort zone, I do not know anyone that could show me how to inject IM, I have watched some youtube vids, I keep on saying that I should just get on with ordering the stuff but yet hang on to the forlorn hope of my gp doing the right thing by me.

[Polaris in reply to Kenbowns]

Many on here have found the thought of it more daunting than the actual doing and been surprised that it was much easier than they had thought it would be ? Some practise on an orange.

Lots of info on here if this is what you decide on Ken.

[jade_s in reply to Kenbowns]

I'm self-injecting subcutaneously because I too was afraid to go the IM route (started loading doses one week ago). I had my sister-in-law who's a nurse do the first injection just in case I had an allergic reaction. I'm still a bit nervous with each jab but it's actually super easy and not painful. If diabetics can do it 3x a day or more, I figured I could do it once every few days! I use a 10mm 26g needle with a 2mL syringe and hydroxy B12 from Germany. I practiced handling the syringe/needle with a glass of water (we were out of oranges LOL).

I starting SI because my gp refused to do further B12 testing and refused to even listen to my issues - and attributed the many neuro symptoms (the ones she was willing to acknowledge anywy) to swelling and a medication I'm taking. Your GP might be more helpful!

[Kenbowns in reply to jade_s]

Thanks for your support Jade

I wondered about the sc route but as I have a bit of belly fat I was concerned that the b12 may not get into my system properly.

Are you seeing any improvement yet ? although it is only 1 week so far.

[jade_s in reply to Kenbowns]

I too have plenty of belly fat but it's definitely been helping! A few things got worse before they got better, exactly as I read here: the numbness in my fingers and feet turned into a strong tingling feeling for most of the week. Today both finally seem to be going away. Two things that seemed to improve very quickly were my strength and balance - I was quite suprised. Other symptoms have been up and down (e.g. mood, irritability, vision). Also still waiting on the hair loss to let up!! Being able to see my scalp is pretty depressing.

In any case the amount of fat shouldn't matter as SC is supposed to go in the fat layer, past the skin layer. From a few studies I read, weight does not seem to affect the actual thickness of the skin layer, so the amount of fat won't really make a difference for SC (from studies of diabetics). It may however affect IM injections, as you'll have more fat to go through to get to the muscle. I know nothing about IM shots.

BTW from I read here, you could go with an even finer (e.g. 29 to 31g) and shorter (8mm) needle but the 26gx10mm was the smallest the pharmacist had.

[Gambit62 Administrator]

The reality seems to be that MMA and homocysteine after supplementation can be a bit hit and miss. Yes there was someone recently who was able to get a diagnosis of functional B12 deficiency as a result of high MMA and homocysteine but this doesn't always seem to be the case.

My guess is that the body probably prioritises how it chooses to use B12 - although the shut down order for other things - noticeably blood/oxygen - is pretty established with very little variation - that may not be the case for B12 so for some people the body may prioritise MMA and homocysteine over other systems so having supplemented B12 leaves these normal but other symptoms continue because those are the processes that are being starved of B12. However, that is very much my guess - I'm not aware of any research that has been done on this - doesn't mean that it hasn't been done - just that I am not aware of it.

[mrsm49]

Have you tried sublingual methylcobalamin form of b12 as a stopgap? I take high dose 5000mcg which helped my neurological symptoms enormously unless I miss a few days when they creep back. I get solgar ones fm Amazon although there are others like Jarrows brand. My bloods now way over range which always panics them

I've never been diagnosed with deficiency as my level was in range although low (and I was already taking a supermarket multi but which could hve swayed results). I'd been complaining of numb tingly hands, brain fog etc for years but always told results were normal (!) Just as well for sites like this that help us to help ourselves.

[Kenbowns in reply to mrsm49]

Mrsm

Yes I have been taking 3x5000 Swansons per day in the meantime although I have temporarily stopped these as they want more bloods tomorrow.

I have to say though that my heart was thumping and I thought that this was from the b12 def, when I stopped the Swansons my heart simmered down, also I have another unexplained problem where my face and body is very red, the swansons seemed to aggravate this too, very mysterious.

[mrsm49 in reply to Kenbowns]

What type of b12 is swansons? Is it methylcobalamin? I've heard that's the easiest form to take .

I reckon yr bloods will be massively over on that dose lol. It'll make them panic as in my experience they never bother to read in my notes that I supplement myself!

I hope you get yr injections soon, maybe you'll have to start injecting yourself. Good luck x

[Kenbowns in reply to mrsm49]

Yes it is Methylcobalamine.

Ridiculously this is the second time that they are testing serum b12 following loading doses and supplementation, my last jab was on 23rd September, my last blood test I was >2000 and that is why he stopped my treatment, today I feel rough.

I know that I will end up self injecting

[jade_s in reply to Kenbowns]

So sorry they're giving you the runaround. Grrr!

I wasn't able to tolerate sublingual methyl - it made me super irritable. I don't know about the redness, unless there's some niacin in the tabs too? That can cause flushing.

[mrsm49 in reply to Kenbowns]

Goodness don't they know testing after supplementation is useless as the results are skewed!!!

[mrsm49 in reply to Kenbowns]

Sounds like you're reacting to an ingredient in yr b12, maybe a colour or filler?