What vitamin supplements to take alongside B12 injections?

[TheSunshineSanctuary]

Hi all - I'm currently on monthly injections for PA but still feel tired every morning even after a good nights sleep; low energy days; trouble focusing etc - sure you'll all be familiar with the symptoms!

I've had several further blood tests and vitamin D and iron deficiencies have been identified (iron levels look to have dropped after B12 injections started). So I'm currently on vitamin D3 800IU once a day and ferrous fumarate 210mg 3 times a day. These have helped somewhat, especially with brain fog, but still having the ongoing issues.

GP can't find anything else wrong from tests and seemed at a bit of a loss so I tentatively suggested I may need more frequent B12. Surprisingly, whilst they were hesitant as they'd already increased me to monthly, they haven't given me an outright no and have written out to a haematologist for advice. Not holding out too much hope but at least it shows there's some decent GP's out there who are more open to think outside of the box and are less dismissive than some of the awful experiences I've read about on here. Keeping the possibility of trying self injection in my back pocket if needed.

In the meantime I've read that taking supporting supplements can help the B12 to do its job so, alongside my usual multivitamin, I've now started taking magnesium 375mg and folic acid 400 micrograms.

Early days and could be sheer coincidence (or all in my head!) but I've had more 'good' days in the last week or 2 where I'm still tired etc but feeling overall more positive and on the ball, plus it's a little easier to deal with people / stress.

Hoping someone can let me know if the amounts I'm taking are sufficient? I know there's others that may be of benefit (zinc and potassium?) but what other supplements and strengths do you find beneficial? What strength of vitamin D and iron do I need to take to maintain my levels once my prescription finishes?

Finally, more out of curiosity than anything else... I tend to find I'm really sleepy later in the day after my B12 injection - if I listen to my body and rest for the day plus take a nap, it seems to help and I feel better than I do if I just push on. It's almost like my body's telling me that it now has what it needs and to get out of the way and let it get on with it sonit can get as much use out of it as possible haha. Does anyone else find this?

Thanks in advance

[Nackapan]

Definitely 'pushing through ' is s huge mistake for me.Old habits

Im often dopey, actually feel doped later in day of injection and following day.

Also a headache. This less frequent now.

Used to be day after a b12 injection every time.

As for supplements .

400mcg folic acid is a maintenence dose .

Depends what your levels are.

Vit D . I need 3000iu a day to stay at 75-80 ( below 70 low

After my prescription finished of ferrous fumarate 210.

I get bloods done every 6 months .

Ferritin I aim to be above 50

My Hb was in mid range on what i take .

Have had no

guidance from my Gp on this.

I alternate with solgar 20mg ,spartone ' z supermarket 20mg iron snd ferrous fumarate 210 mg( can buy otc)

The multivit I take has 14mg in it.

I have vit c with meat .

A good mixed diet.

Absorbtion problems often include many things.

Vit D first to get diagnosed.

My ferritin level dropped when I had loading doses of B12.

Gp's I've seen say bloods normal apart from cholesterol.

I do point out every time 'within range ' on supplements.

[B12again]

On the B12, I recently had the 6 loading doses for the symptoms I was experiencing, the symptoms started to disappear after 4th injection. After the last one I felt so much better and then jabs where scheduled for 3 monthly but blood was taken for an intrinsic factor anti body test straight after the last one (I’m ignorant of all things B12 at this point), after 2.5wks the symptoms returned as bad as ever. I got a phone appointment with a fairly recently qualified doctor who didn’t know much about B12D and certainly not read any NICE guidelines on the subject, she categorically said I didn’t have PA and that without seeing me or listening to my symptom experience. She did say she would get advice from a consultant haematologist and get back. The following is her reply quoting the response from the haematologist:

““Dear Mr xxxxxxxx,

I have had a response from Dr Lisa xxxxxxx. consultant haematologist who has written the following

'Once replenished B12 stores last for several years. There is no need for injection any more frequently than 3 monthly. It is very well recognised that B12 injections can provide a feeling of good health that is unconnected to the B12 level. I would not recommend more frequent injection, however as far as I am aware there is no toxicity state associated with excess B12'. “

“Based of this advice I would not prescribe outside of 3 monthly. I hope this answers some of your questions in regards to the B12.

Thanks, Dr Samantha xxxxxx

Xxxxxxxxx Surgery””

Just about the worst, ignorant response one could give. I was basically being told I was on a high. The upshot is, you need to educate yourself then not give up in advocating for your health before medical professionals, politely of course. I have started to self inject, the surprising thing is it’s not that expensive. Good look.

[Annamaudebug in reply to B12again]

Precisely! Most Doctors think inside the box not outside. So typical.

[Flintfootfilly]

Check out self injection with B12 in case you need much more frequent jabs as do many people do.

Also worth reading a couple of Dr Myhill's books-one on chronic fatigue (I found lots of useful suggestions for helping our energy levels in that) and her book on Ecological Medicine.

[mozlaw in reply to Flintfootfilly]

myhill is a quack. read up on her.

shes making money out of peoples medical ignorance and been warned by the gmc many times.My wife has m.e

[Mixteca]

There have been studies showing that much lower doses of iron taken on alternate days to be more effective than higher doses daily. I was taking 20mg EOD, as was my sister who found the high doses you're on totally ineffective. Food for thought.

[Technoid in reply to Mixteca]

^This. Paradoxically, the more oral iron taken, the more iron absorption is blocked. Moderate EOD doses are a lot more effective based on everything I've seen/read.

[Mixteca in reply to Technoid]

A paradox becomes irony I've discovered. I've never heard of a case where a person gets progressively much worse after an iron infusion rather than better, but that is happening to me. Three months later.

[Hockey_player]

Have you been tested for sleep apnea? My fitbit Luxe measures O2 at night and shows yellow spikes when the O2 has big changes. The fitbit has info about the number of times you wake up at night and for how long. Maybe your sleep is low quality?

[Annamaudebug]

Hi Sunshine…I live in the US and my thought is doctors here are somewhat different in their approach to PA. My Doctor is an internist and he is very careful in monitoring me and insistent that I continue to self inject. I would prefer not to use cyanocobalmin but he says it will work and so far it seems to. I am limited due to other concerns to 1000IU’s of Vitamin D3. I take D3 not D. I also take a multivitamin called Tangy Tangerine that I get on Amazon. Plus extra folic acid. My sister in law, who is an osteopath, believes people with PA also need all the B vitamins supplemented. My iron has remained stable which I am grateful for. I have blood work every 3 to 6 months as I am also taking an aromatherapy for breast cancer. The PA was diagnosed about 15 years ago and I have always self injected except for the loading shots. Please consider doing your own research and taking notes, if you are not, on how you are feeling. NO ONE will ever advocate more for you than yourself. Be armed with a vast array of knowledge on PA, supplements, etc. Doctors do not know everything and they often agree on things that are wrong until proven otherwise. They tend not to think outside the box. You want a doctor that DOES think outside the box.

[Maddiez]

I can really understand your struggles Sunshine, I was diagnosed with PA about 14 years ago now & it was so hard to begin with. I soon felt I needed the injection more than every 12 weeks & after GP denial I began research.I joined the pernicious anaemia society & they had a great forum. I learnt of people having their injection every 4 weeks, 2 weeks & even 1 lady who undeniably had to have it 3 times a week. After all my research I spoke to a lovely GP who listened to me, looked up what I said, agreed to every 2 weeks on provision that I leave my info for her to research further herself. 2 weeks later she told me she found no harm in regularity of injections so frequently but it bothered her my liver would cope so agreed she'd blood test liver every 3 month's. It wasn't long before I was feeling so much better but tired of trips to GP so asked to be taught to self inject. The lovely GP taught me, watched me then gave me prescription for B12 & I've never looked back. It's frustrating I pay prescription charge when I could take up their appointment time & get it for free but easy to do when I feel I need it.

The lovely GP did continue to refer me for checks as to why I felt I needed it more frequently. I was checked for celiacs & other bits & it came to a find for me when she referred me to neurological consultant. MRI scan, lumber puncture later Multiple sclerosis was found (although I asked to see results for proof knowing how PA is so misunderstood & got shown). However I still feel benefit from my B12 injection every 4 weeks & have heard of so many other people who have it every 4 weeks too.

[carr_trip]

I take pyridoxal-5-phosphate (vitamin B6 , P5P form )

[valley16]

I asked on here about B vits a few weeks ago but it got lost down the list (my fault, its ok), But seeing as there's a vit thread here, I'll check again. I self inject every other day or every 3 days (since Feb 22), should I also take folic acid 400 strength daily, and B1 100mg daily?I've been feeling worse again the last month so thought of getting some. Are they ok with B12 injections - do they help not hinder? Are they the best help? Thanks.

Never been so fatigued as the last 6 months, still worsening. And my numbness has come back in quite badly and quite suddenly the last 4 weeks.

Told my gp - they couldn't give a shit.

So here I am!

[B12life]

what was your b12 level before your first ever injection?

[valley16]

Is that to me or the O.P.?

My first injection was about 18 years ago, and was "dangerously low" (my gp then was never one for numbers!). I was on b12 every 8 weeks for about 10 years, then moved to every 12 weeks. Then about 12 months before lockdown a go with a bee in their bonnet decided to cut me to every 6 months as I "don't need it as levels are good", words were actually drop to every 6 months to see if symptoms return! But then of course in lockdown for no injections at all, and after about a year of nothing they then refused to restart injections saying I should just have tablets.

So in august 2021, 3 years since my injections were stopped after having them for 15 years I had what at the time was thought to be a mini stroke, but the stroke team a month later decided it wasn't and then I had a long year of Neuro appts.

My limp, dragging my leg, balance problems, numbness in feet, arms, chin, hands terrible dropping things, pain... I looked into things and armed with nice guidelines managed to convince a gp to give me back injections, but only every 10 weeks. That was feb 22, and I started self injecting same time.

Neuro tests show I have spinal stenosis in my neck but the spine man was very dismissive and said it wouldn't cause this (tho imo surely having two vertebrae poking into your spinal cord badly could do...). Lots of tests. Ending with the Neuro woman branding me as fnd, dismissing b12 as a problem for nitros oxide users. The woman doing the jabs at the docs has started being nasty and quizzing me (such as accusing me of coming one day before it was due, as "we can't legally give it even one day early". So I'm expecting them to try and pull it at some point.

Been really feeling the numbness issues again lately, when I thought I had eased it...

So thought I'd ask about folic acid and b1 a few weeks ago.

I had been taking vitamin D high strength 2000 but the stroke team in 2021 told me off and said that amount could've caused it(which I doubt) so I've always never really known what to take, as if you ask a doc they just say a general multi vit.

I just don't want it all to return again. As I sit here in bed my left foot in burning and doesn't feel all there, and my fingers are so bad.

[valley16]

Oh wow... another time I've written a lot and got no response

When I asked about vits in a previous thread the one reply I got told me that as it was already 5 days old when I wrote in it no one would see my post.

But this thread? It was only 2 days old and still being replied in when I posted my reply, and then I posted another a day later. And no one sees it?

I don't get that... I get these posts in a daily digest, that due to one thing or another I sometimes wait til theres 3 days worth and then catch up.

I just had an on topic question, in this thread and the other ine. But no one sees me. I'm as invisible as when I'm at the dcotors. My mum wouldve heard me. I miss my mum with every beat of my heart. 5 months now, oh mum I need you. And I can write all this as it's clear no one will read an old thread, when it seems this has past that point now. If numbness is going to creak back in til I collapse paralysed, I'll just go. I ask, there's no one there, people say to ask don't they.

[Technoid in reply to valley16]

Hi valley16,

Don't feel ignored! this is a technical/protocol issue. Folks will be happy to help you if you start a new thread. Its considered impolite to use someone else's thread to ask wide-scope questions about issues of your own that you may be having that are not related to or directly intended to help the original poster.

Threads here are not created to discuss topics (in general) but to ask questions or provide info. Replies within the thread that are not addressing the original poster or discussing a topic they raised but instead posing independent questions may be ignored, usually because the original poster is considered to "own" the thread in a sense and side discussions on someone else's issues are not considered on topic and might be viewed as "hijacking the thread". Gambit62 can correct me if I have not stated this correctly.

Look on the upper right of the forum screen for the "Write" button and copy paste your previously posted question in there. I'm sure you'll then get many replies!

[valley16]

Sorry if it's impolite. I asked a one line sentence about is b1 and folic acid good for B12 users. As it was a thread about vitamins. I see people do this all the time.... nd get a quick one line answer which is all I was looking for.

in fact one could point out that in this thread the poster "b12 again" wrote a long piece about their own issues, no one told them off - they even got replied to. So I thought I could ask my ONE quick question which would have a yes no answer.

I only later made the Long post as I was unsure of the reply was about me. I didn't do a new thread as it was one line about vitamins in a vitamin thread.

I still say a one line question about vits a in the middle of a thread about bits is ok, or so I thought - as in the 18 months I've read this forum I see many many people ask quick things in other threads and they get anxwered. I guess I'm not in a clique. I'll go then. I'll let my numb feet make me "accidently" fall over, crack my head open and join my mum wherever dead people go. I'm alone and everywhere I turn online shuts me out. So no one will even notice I'm gone.