Update & question 🙈

[Jaylou82]

Hi just a update, I managed to get the nurse to give me another B12 injection today much against her wishes. So after having a result of B12 180 in October I have now 1x injection on Friday and another injection today plus been taking b12 sups of 2000 per day. Have noticed some symptoms have improved a little such as pains in legs and feeling like I have no energy. Has for other symptoms such as tingling/vibrating in feet (seems to be more since injections 😕) tinitus haven't noticed a difference at all. Could it be that they are still low? I know everyone is different but what kind of levels would my B12 have to be at to see Nureo improvements if any? Also I know this is a stupid question (I'm new) is it possible to have to much B12 given to soon ? Thanks for your replys ☺️ Ps still awaiting appointment to see why I'm B12 def, all pointing to PA sorry just to add for any new members I have been B12 def since 2003 but never been treated for it, I assume it's remained low from then by the way I have felt and few other B12 bloods done over the years which have been low but never had treatment

[clivealive Forum Support]

Hi Jaylou82 2 injections in four days is hardly going to "overload" your system and if you have an absorption problem then the tablets(?) aren't going to add very much more.

The recommended "loading" doses are "initially 1 mg on alternate days until no further improvement," so you are well under that.

You need to have a healthy level of Folate as this is essential to process the B12

It's not uncommon for symptoms to come and go in their severity and/or improvement as the B12 starts to repair the damage done to your nervous system. It's not an overnight magic cure and there is no guarantee that all symptoms will completely disappear but at least you are starting out on the road to recovery and I wish you well.

I am not a medically trained person but one who has had P.A. for 45 years and I'm still "clivealive" at 75

[Jaylou82 in reply to clivealive]

Clivealive thank you, I learn a so much new c wry day from here. Where would I find my folate level ? On my blood results it just says B12/folate low only number I have is next to B12 serum level which is 180. Has I have read that it's basically pointless having B12 treatment if you folate level is low. Is this true ?

[clivealive Forum Support in reply to Jaylou82]

I don't understand where on your results it would say " B12/folate low" if your serum folate hadn't been tested and had a measure shown alongside.

I personally take 1 – Folic Acid 400μg every day and I doubt this would do you any harm if you did the same for three or four months and then get tested.

You can buy folic acid over the counter at any pharmacy and it is also to be found in leafy green vegetables, sprouts, broccoli, asparagus, basil etc and it is now being added to some breakfast cereals.

It is important that you do have a healthy Folate level to process the B12.

[Foggyme Administrator]

Hi Jaylou. Second injection - and the nurse objected! This is not good.

Had a quick look at your previous posts but I don't have too much time at the moment so will have to be brief and apologies if I miss some of your history.

So... here goes..you've had B12 deficency for many years but never been treated...you have a family history of PA...you have neurological symptoms that you've had for years...

Both your MCV and MCH are high (indicative of B12 deficiency and / or low folate) and indicate macrocytosis (large red blood cells often present in pernicious anaemia - amongst other things) and your B12 level is 180 (191-900), proving a definite deficiency even after supplementation with high dose B12 tablets.

What on earth is your doctor waiting for - you need immediate treatment with B12 injections - and you need the neurological regime. Two injections will just not do the job - and this is not in accordance with any current guidelines.

This is what you should be having 6 x 1mg Hydroxocobalamin on alternate days (the loading doses), then 1mg Hydroxocobalamin every other day until no further improvement (sometimes for many months), then 1mg Hydroxocobalamin every eight weeks (though this is not enough for some people - but that's another story).

And you GP needs to check your folate level. B12 and folate work together and if you folate is low, then your body will not be able to use the B12 properly. Folate levels should be in the top third of the reference range.

As others have said, he also needs to test for PA - anti-IF antibodies.

If they haven't already done so, get ferritin levels checked (should be 80-100) - people with low folat and B12 often have low ferritin levels and this will make you feel really ill.

It,would be a good idea to read the PAS pinned posts, highlight anything to to with your case, and take the information along to your GP. You really need to get those B12 injections started quickly as undertreated B12 deficency can result in potentially irreversible neurological damage.

If you belong to the Pernicious Anaemia Society, go to the library and print off a document called subacute degeneration of the spinal cord - take this to show your doctor, then insist he treats you according to the guidelines (I.e. Neurological regime of injections). I'm not saying you have this - simply that your GP needs to see evidence of what is at risk if you are not treated immediately. (If you do not belong to the PAS you can also find the information at b12deficiency.info or by doing a search on the Internet.)

And because of your neurological symptoms the treatment should be injections, not tablets or sublinguals.

Tell him that he can find details of treatment regimes in the BNF - he'll know what it is and have a copy on his desk. It's the second item down so he may have to read further than he usually does!

Ah ha, he might say, but this is only for people with PA. Moot point - it's the treatment for B12 deficiency that PA (amongst other things) causes. And the treatment for B12 deficiency and PA is the same. The most important point is that you need to get some B12 into your body to prevent potentially irreversible nurological damage (sorry if I keep saying that - I'm imagining that all the GP's in the land can hear me 😀).

And if your nurse causes trouble, get her to log on to the Pernicious Anaemia Society website and check the section for medical professionals. She/he will learn some things about B12 deficiency - at the very least, what the recognised treatment regimes are.

Sorry...have to dash now....lots of folks here to help....post more question if you're not sure how to deal with your GP or if it gets difficult and you want more help.

Take care and let us know how it goes 😀

P.s. Perhaps your nurse thinks a B12 injection is like a 'flu jab. Ha 😖

[Gambit62 Administrator]

B12 is used by several systems in the body - macrocytosis is the result of not having enough B12 available for the production of healthy red blood cells - new red blood cells are made as old blood cells die - and as they tend to live for about 4 months that means it takes 4 months to completely clear macrocytosis. So those of your symptoms that are due to macrocytosis will take several months to clear.

B12 is also used to maintain the lining around nerve cells - healing this is a very slow process so it can take even longer for these symptoms to disappear - and sometimes this damage can be permanent. My tinnitus has never gone away entirely.

B12 is also used to recycle neurotransmitters in the brain and this one tends to pick up very quickly - it's also used in the processes that release energy in your cells and muscles.

Some symptoms can be the result of effects of B12 on various different processes and the mix varies from person to person so you will see some improving and others not - and some may seem to get a bit worse (pain related tends to be a specific issue as your brain gets used to interpreting weak signals and suddenly they are coming through much clear and it takes a while to adjust.

[Foggyme Administrator]

JamesStone.

@fbirder response to one of your earlier replies:

Re cobalamin and light sensitivity: only the energetic, short-wavelength, light that does any serious amount of phwotodegradation. And amber glass cuts out almost all of that. It's why photographer's dark rooms have red lights - they don't degrade the emulsion in B&W film.

Hydroxocobalamin and cyanocobalamin are much more resistant to thermal degradation. That's why they can be stored up to 25ºC. Methylcobalamin, OTOH, is more thermally labile and many manufacturers recommend storing it in the fridge.

People who are homozygous (2 copies) of the C677>T MTHFR mutation may benefit from taking methylfolate. If you take this then there should be no problem converting other cobalamins to methylcobalamin. That means you can take the stabler, cheaper, more accessible forms.

@Gambit response to one of your earlier replies:

Please refrain from telling people that methylcobalamin is the only form of B12 that works - it isn't true.

I respect that your experience and that of your family may be that methylcobalamin is the only form of B12 that works for them and that injection is the only method of delivery that works for them. However people are different and there are many posts on this forum from people who have experienced problems as a result of taking methylcobalamin and many on this forum who find that methyl actually does nothing for them.

Please note this article from the pinned posts regards use of methyl. Although it is addressing the use of sublinguals it also talks about methyl in general.

b12researchgroup.wordpress....

Whilst MTHFR variants affect the methylation process their main impact is on processing of folate. They make it less efficient. They don't stop it outright.

The best form of cobalamin and the best forms of delivery are the ones that work for the individual concerned. The metabolism of B12 is complex and not fully understood. The genetics are complex and the interactions of the various genes connected with B12 and methylation processes are not fully understood.