Thank you admins re MMA

[GromitSJ]

Thank you for your replies Taka and Foggyme. B12 injections have relieved my extreme fatigue, the main symptom I experienced.

Several years ago my Active B12 & MMA were analysed at St Thomas Hospital (twice) and found to be in the "grey area", but no action or further monitoring was taken by GP's.

I have checked my serum B12 since commencing B12 injections; and as expected was high in the reference range. I wondered if it would be worth my expense to find out if my MMA has reduced since on B12 injections so that it may be a guide to the future.

I am just curious really,(to compare with previous MMA tests).

Life has been tough to get low B12 recognised, by the NHS. I have been concerned about B12 deficiency since 2013 & 2014, only when I produced a further (private) test revealing borderline B12 202 ref (197 - 771), in 2016, were B12 injections commenced. G.P did check FBC & vitamin D, which were considered normal. Intrinsic Factor Antibodies were not requested by the surgery; and I hastily had to arrange IF Antibody test before loading doses commenced. Intrinsic Factor Antibodies were found to be Positive, (by the private sector). I have since repeated the IF test and it was again Positive.

Thanks for all your valued information.

[Foggyme Administrator]

Hi GromitSJ. That's really good news and so good to hear. And with a confirmed diagnosis of PA your GP will not be able to stop your injections. Hurrah.

The main thing now is to get the frequency right (and this differs for everybody). If your symtpoms come back before your next injection is due you'll know that you need them ore frequently.

Can't remember if you have neurological symtpoms but if you do you after you've had the six loading doses you should have injections every other day until no further improvement (for up to two years) then injections every eight weeks. If not loading doses and the injections every three months.

However...these are just the prescribing regimes laid out in the guidelines and many people need injections more frequently than these guidelines allow for (the frequencies people describe here range from every day...onward).

Some GP's do 'allow' patients to have a frequency that keep symtpoms at bay and keep them well...but these are few and far between. Unfortunately.

If you have problems with this (hopefully you won't) pop back for. More advice.

About the MMA test - once B12 treatment has started this will come down so knowing what it is now would be of no value - all it will tell you is that the B12 is working. And if you are having symtpom relief, then the B12 is working. The only value of an MMA, at this stage, would be if you are having no response to your injections. In this case, an MMA test would be done to see if a functional B12 deficency is present (i.e. this is where B12 in the blood is not being processed properly and thus making into the cells, where it is needed - but that's a different story 😄) . If a functional deficency is present then the MMA might possibly remain raised. From what you say it sounds like you are having symtpom relief so this is not likely to be the case.

About the blood results - GP's often say these are normal when they're not (bumping along the bottom (or indeed the top) of a reference range is not good enough for some people). It's always a good idea to ask for copies of all your blood results (you are entitled to these) and if you want to post them on the forum, people can help with interpretation.

Again, really pleased for you GromitSJ. Hope all continues well...pop in and let us know how you're doing and post again if you need more help or advice.

Take care 😄

[GromitSJ in reply to Foggyme]

Hi Foggieme, Yes, it was such a relief Positive Intrinsic Factor Antibodies were found (privately),as I had been concerned my B12 levels were dropping in recent years. I also have raised Anti-Parietal-Cell Antibodies, found in 1999. I hope GP's will not be able to stop injections, as I am doing reasonably well on three monthly injections.

I can't really say I had neurological problems, but I have other autoimmune diseases, hypothyroidism which I have had for years; and Sjogren's identified in recent years.

Re: MMA test. You mentioned - Once treatment has started this will come down. I trust my MMA has come down, as it was raised; in the "grey area" in 2013 & 2014. I think I will ask my private doctor for a referral, to check MMA. I am just curious really: and interested to see if MMA has returned to normal limits, on three monthly injections.

About blood tests; GP's will often say these are normal when bumping along the bottom. My GP informed me my (private) B12 test was "Normal", when I presented a copy of results - 202 ref (197-771) I requested the GP repeat the B12 test via the NHS. (He didn't). Never the less loading doses were commenced by the NHS the following week.

Thank you all for your support - It is needed!.

[Foggyme Administrator in reply to GromitSJ]

GromitSJ. No your doctor will not be able to stop your injections. injections are for life...as is PA (but oh that it were not so 😖💉💉).

MMA can't hurt if you want it for curiosity sake.

Neurological problems can include balance problems, feeling dizzy, tinnitus, bumping into things, generally feeling unsteady, numbness or pins and needles or the inability to stand up in the dark with your eyes closed. Only saying this because some people have Neuro problems without realising it. If this sounds like you, you may need more B12.

Or...if your symtpoms come back before your injections are due (this happens to a lot of people) the answer is....more B12. Though getting it from a GP is, perhaps, another story.

GP's really have no idea do they 😖.

Good luck to you GromitSJ...keep well and let us know how you get on...forum always happy to help as and if the need arises 👍

[GromitSJ in reply to Foggyme]

Hi Foggieme Thank you for your response, You have certainly described neurological symptoms clearly. I did experience fatigue, a slight "woolly" feeling after a long day; and tiredness in the evenings All of this could be intermittent, Doctors never asked how I was feeling, symptoms appeared to subside after B12 injections. It has been difficult to distinguish between other autoimmune diseases; as thyroid disease was rendered out of control twenty years ago, with a massive rise of TSH, due to drug interaction. (It took six years for the abnormal blood tests to be found) I have always requested copies of tests since then. Never to be caught out again, I find "chasing up" these medical conditions more like DIY (No one else will ask for tests and try and interpret results unless you do it yourself).

I did purchase 1000mcg sublingual B12 tablets, in case I may develop problems; but I have not used them. (Hence my query about MMA) I do take a vitamin B complex each day. Hoping it helps!.

I wondering which products maybe best, if I should require additional replacement of B12, between three monthly injections, and if additional B12 may relieve the pain in my shoulder and upper back. Pain has become worse in recent years; as B12 level declined. I have often wondered if pain and tiredness may have been prevented from getting worse had action been taken when serum B12 was 397 ref (175 - 900). in 2013. My GP informed me I did not have B12 deficiency, (as expected!) and another GP told me I had Osteoarthritis, and to look in the internet !!!.

I am sure there will be many more questions I need to ask, as only commenced injections last year.

Thank you for your support and references.

[Foggyme Administrator in reply to GromitSJ]

Hi GromitSJ. It's quite difficult to say which product are best for 'boosting' between injection since different things work for different people.

Some use sublingual lozenges, B12 sprays, nasal drops, patches....and what works for one may. It work for others.

One thing though...if your symtpoms are routinely coming back before your next injection is due it might be worth discussing with your GP and asking if you can have more frequent injection.

Though GP's some can be quite difficult about this (and require lots of 'evidence' before they'll even consider it, some do manage to get the extra. So might be worth a shot (excuse the pun 💉) if you're struggling.

Take care 👍

[Steap]

I wish I had your Gp. I too just had fatigue and a Wooley feeling for almost five years after my Gp ignored a b12 serum of 146pg.

Last year I developed neurological problems and he still wasn't interested so I did a private test and my b12 was 153pg.

He's still not interested and I'm still suffering and waiting to see a physician mid March.

I've had to self treat with oral b12 but it's not great for repairing damage.

Some gp's need a rocket up then.

[GromitSJ in reply to Steap]

Yes, some GP's do need a rocket up them - Steap - I have experienced this need over the years.

My GP only commenced loading doses when I presented him with a copy of borderline B12 results, after at least three years of declining B12 levels. (Mostly private tests).

I had suffered increasing fatigue during this time, no questions were ever asked about that. An Intrinsic Factor Antibody test was never performed; and I only found this was positive; last year via yet another private test.

I had "self treated", with 100mcg B12,over three years, but I do not think it helped much,(the dose was too low in any case).

I hope you get some acknowledgement of low B12 in March - without having to put a rocket up them !!

[GromitSJ]

Thanks Foggieme, I hope I will manage to get by with three monthly injections. Trying to persuade GP to give additional injections could be very difficult !!!