How long to recover from 'not-anaemia'?

[ecp-swuk]

Hi there, new to the forum and have been reading some posts from users here since being found to be B12 deficient.

I was having serious issues with fatigue, muscle weakness, and an inability to gain weight over several years. By the time it was diagnosed I was experiencing severe bouts of dizziness, and felt as though I were barely awake.

It took the doctors a long time to discover the deficiency, some of my stats were:

15.3% red blood cell count

11.2% (I don't remember the official name) red blood cell size

Low globulin (can't remember the number)

135nmol B12 (deficient, even in the NHS' loose standards)

30nmol Iron (not quite deficient)

Folic acid was at 4 (nmol? not sure what measurement, but it went up to 20)

They also tested for Intrinsic Factor, they've done an endoscopy, and they're tasting my pancreas at the moment. But yeah, I had no serious anaemia - just the lower end of things - and thus far nothing has been found to indicate why I'm deficient. It's not dietary either, I was somewhat surprised to hear I was deficient in iron and B12 when I eat loads of red meat.

So right now I'm taking 3 iron tablets a day, self injecting 1000mcg hydroxocobalamin every 4 weeks with 5mg of folic acid each day. I had loading doses back in November.

However, I am still finding that at the weekends, I need to sleep for long periods of time. I'm still having to take stimulants to complete my every day life. While I felt the loading doses improved my health somewhat significantly, it still feels like something isn't quite right, and like I'm still more tired than I should be. Can anyone provide me some further insight on why this might be the case?

[greenbexy]

Hi ecp-swuk , I'm sure someone will be along soon with more knowledge to advise you. It sounds like you have most things under control- self medicating etc. Have you had your vitamin D checked recently? This can make you feel pretty rubbish too.

As for your diet, I'm them same, eating plenty of meat, but still B12 deficient. You may have absorption problems, hence checking the vitamin D, as I do. Did the endoscopy not show anything conclusive? Also I know that some symptoms can appear worse before they get better, unfortunately!

Have you read the pinned posts on here? Theye are really helpful, as there are many reasons to become deficient, PA is one of many. Hope you get to the bottom of the tiredness, I'm sure that most on here (if not all) know how that feels!

[ecp-swuk in reply to greenbexy]

Hi there and thanks for the reply, I did have Vit D deficiency as well, however this level was normalised in just a couple of weeks of taking supplements. I've continued supplementing vitamin D since then.

The endoscopy has not yet produced anything conclusive, so far it's regarded as idiopathic deficiency.

At the moment my main concern is getting myself back to normal energy levels. Given how run down I am at weekends I'd reckon I'm only at 50-70% of where I should be at.

[greenbexy in reply to ecp-swuk]

Honestly, vitamin D can take weeks to get 'in range'. I was on 20,000 units twice weekly for seven weeks. And I'm still not feeling too well, although my 3 monthly vitamin B12 jab is due tomorrow!

Have you had your Thyroid checked? This can also make you weary. As these autoimmune disorders can come in twos, threes etc.

[Gambit62 Administrator]

at least 25% of those who are B12 deficient don't have macrocytic anaemia (red blood cells larger and rounder) when they present - or don't appear to. if you have an iron deficiency as well that will cause microcytic (red blood cells smaller) - so just going by presence of anaemia is going to give a very confused picture.

test for PA - IFA - is prone to false negatives (40-60% of time depending on assay method) so negative doesn't rule out PA.

B12 is used by a number of processes in the body and symptoms can arise from lack of B12 for more than one process. different processes recover at different rates - anaemia a few months - damage to nerve cells much slower. isn't uncommon for it to take 6 months before people notice a real difference.

Suggest you make list of all symptoms and monitor changes in each.

Could also be that 4 weeks isn't frequent enough for maintenance for you. Also suspect that you had standard 6 loading rather than 3xweekly until symptoms stop improving recommended for neurological involvement

[ecp-swuk in reply to Gambit62]

Hey there, I had no idea intrinsic factor tests were so unreliable. I guess I'll start probing my doctors to carry them out a few more times.

Luckily the nerve damage I had didn't occur as a result of the B12 deficiency, it resulted from a sports injury but I guess never properly healed, when I start to dip low in B12 I start to notice these factors (affected area feels notably colder than other parts of my body).

You're right I had 6 loading doses, and then was scheduled for one every 3 months after that. It straight up wasn't enough, so I sourced the materials to do it myself and was going to go for one every month. Levels were tested post loading doses and they were sat at 889 nmol. Do you think it'd be worth upping myself to more frequent injections until the fatigue levelled out completely?

greenbexy I'm pretty sure they tested my thyroid, think that was one of the first things they did like 2 years ago. I can always check with them.

[Gambit62 Administrator in reply to ecp-swuk]

how long after loading was the serum B12 test? - level sounds quite low for someone who has just had loading doses.

Neurological symptoms would include dizziness and the not feeling awake sensation you describe.

[ecp-swuk in reply to Gambit62]

About a month or so after the loading doses; so even 889 (just under their recommended upper limit) is still low given the circumstance? I read up that Asian countries aim for a B12 level over 1000 and that's where I was trying to head with more frequent injections.

So you really think I should up myself to 3 times a week until these symptoms go away? I mean I could do it, I discussed it with my GP and said I was going to do them more often and he said there's likely no harm in it.

[Gambit62 Administrator in reply to ecp-swuk]

people vary a lot in how long it takes for B12 to be removed from the blood and from your levels after 1 month you would seem to be at the fast end of the spectrum.

do you feel better after a shot and then it starts to taper off? Listen to the symptoms and take that as the frequency for shots.

[ecp-swuk in reply to Gambit62]

Yeah I do feel it taper off, but I also remember after my loading doses I felt substantially better. I haven't felt that awake since the loading doses, so maybe you're right and maybe I need to ramp up the injections. Good I'm not too squeamish about doing it to myself huh? I did consider that maybe the extra liveliness may have been a placebo effect.

So my body is making use of the B12 quite quickly, for it to drop back down to 889 within a month? That's pretty useful to know, and I'm surprised my doctors didn't comment on this before.

[Foggyme Administrator]

Hi ecp-swuk. Just a quick thought...

You're currently taking a very high dose of folate. Thus usual treatment is to take 5mg daily if deficient and then drop back to a maintenance dose of 400mcg (or 800mcg for,some people). And once a deficency has been addressed, some people don't need to take folate at all...though most here do take 400mcg as a maintenance dose.

When I was first diagnosed with folate deficency I over did the supplements and folate levels were well,over the top,of the reference range. I got some quite nasty side-effects from over supplementation with folic acid, which resolved when I stopped the folate supplements and my levels returned to a more appropriate levels (I now take 400mcg daily).

Of course there's no way of knowing if this applies to you. The only way to know is to get your GP to test your folate levels (which should have been done anyway, rather than just leave your on the high dose).

Here's a link to further information about folate safety:

mayoclinic.org/drugs-supple...

No idea if this will help, but it worth thinking about.

Also - you say you take stimulants - might be a good idea to do an Internet search to see if these have any potential side-effects or possible interactions with anything else you take. Might be a good idea to stop these and up your B12 (as others - and you - have suggested).

Another also - if you do go back to every other day injections, be aware that this can deplete potassium. Best to eat a diet rich in potassium (banana's, low-salt, more ideas on the Internet). But don't be tempted to use potassium supplements unless under direct medical supervision (too much is as bad as too little and can cause seroius heart problems). I note that your GP is aware...and agrees...that injecting more often won't hurt you (hurrah..a GP that recognises that). Be a good idea to ask him / her to keep an eye on your potassium levels if you do increase the frequency. (Also keep an eye on ferritin and vitamin D levels - often low in us B12 deficients. Oh, and of course, folate levels 😄.

Really hope.you find some answers...good luck and post again if you need more help.

👍

[ecp-swuk in reply to Foggyme]

Hi there, I absolutely see what you mean about the folic acid symptoms having read through your link. I've been following my doctor's orders on this with 5mg tablets, and they're on repeat for me. Last time I had my bloods done, I was at 16nmol, so not above reference with 1 month on 5mg.

Iron and D are known about, I take tablets for both. I take ferrous sulphate as ferrous fumarate didn't agree with me, and take them 3 times a day (given I'm a 6', 23 year old man and had 30nmol (where 27 is regarded deficient range).

Potassium huh, I just checked and if foods like potatoes and leafy greens have them in, I should be alright. Maybe I'll eat a few more bananas. I wasn't deficient or even close to it in my electrolyte panels.

At the moment I use a combination of caffeine and privately prescribed modafinil; caffeine has some interaction with iron, but neither should have a large impact on B12.

I think I'll take the advice of gambit62 and up myself to 3 injections a week as I have the equipment and means to do so anyway; the only awful part is if I stab the wrong bit of me. I hit a nerve in my leg last night injecting, just gave me a reflex twinge and I withdrew the needle. Took me 3 stabs to get it in the right place. Ugh.

I've also contacted B12D.org to ask about methylcobalamin as that seems to be reported as having more effect on neurological symptoms. I currently have ampoules of hydroxocobalamin.

[Foggyme Administrator in reply to ecp-swuk]

Hi ecp-swuk. Sounds like you have things well in hand supplement wise 😄.

Recovery rates vary for each individual and it can take some time for neurological repair to take place - and you were B12 deficient for some time, with very low levels.

It does sound as if you stopped the intensive B12 injections too soon so, I think it's a good idea to go back to every other day injections - perhaps for many months and certainly until you are sure that no further improvement is taking place. Once you are sure you have reached this stage and been there for several weeks, try increasing the frequency slowly...if,your symtpoms return before your next injection, just reduce the frequency again. It might take some time until you eventually establish yourself on a regular frequency that keeps all your symtpoms at bay. Just keep at it and you'll get there eventually.

About the methylcobalamin - that's a bit of a tricky one because different types of cobalamin seems to work for different symtpoms for different individuals. For instance, Gambit finds that methyl works for some symtpoms but not others. Fbirder tried it, it made him feel worse, so he gave it away. I tried it and there was no noticeable difference so I went back to hydroxocobalamin (easier to source and less expensive). Some people use several different cobalamins for different symtpoms, at the same time. And no problem with that. What's best is what works.

At one point the thinking was that methyl was better for Neuro symtpoms but recent research seems to suggest that there is no 'superior' cobalamin and that this is not case. But the fact remains that we are all different and different cobalamins work differently for each individual - so worth trying to see if you are on of the ones for whom methyl does make a difference (there are some who find that methyl does work best form them).

Here's a paper that you might find interesting:

ncbi.nlm.nih.gov/pmc/articl... (No Superior Forms of Cobalamin)

Don't know if you've read through the PAS pinned posts to the right of this page when you log on (or at the bottom if using a phone), but there's lots of information there about B12 deficiency - but I suspect you've found that already 😄.

Anyway...best of luck with the increased frequency, let us know how it goes, and post again if you need any help.

Take care.

👍

[ecp-swuk in reply to Foggyme]

Alright, so did my second injection this week today. Was very nervous injecting my left leg as I hit a nerve last time.

Gonna start having some potassium and magnesium, arrange to have my levels tested, and have my third for this week on Friday. Felt a little better today, sleeping a bit better in general this week. Maybe I did stop the injections too soon, but at that time I didn't have the stuff to self administer anyway.

If you are PA and have a lack of IF, is the same still true about the cobalamin? Hydroxo and methyl being different but fairly equal? I've read that cyanocobalamin is significantly less effective.

[Foggyme Administrator in reply to ecp-swuk]

Hi again ecp-swuk. Yes, the same applies about cobalamins if you have PA (the treatment for PA is the treatment for the B12 deficency it causes.

The main thing about the cobalamins is that different things work for different people. Whilst hydroxocobalamin works for the majority of people, there are a few who do find that methyl works best for them - or that methyl works for some symptoms that other cobalamins don't seem to control (i.e. As per gambit, who has been mentioned before).

You will see things on the internet that state that cobalamin is somehow inferior or less effective. That's not true. In some countries it's the cobalamin of first choice (i.e. America and some European countries). Our very own clivealive has been using cyanocobalamin for 45 years - and the more he gets, the perkier he is 😄).

Some state that cyanocobalamin is 'dangerous' because it contains cyanide - it does - but about as much as is contained in one prune. So...not sufficient to come into the dangerous category (as Clivealive can demonstrate).

Cyanocobalamin has once contraindication - it should not be used in the presence of Leber's optic neuritis.

Other than that, it's perfectly safe and not less effective (though it does have to be given more often - one monthly - as it is not retained by the body for as long - though evidence about this suggests that this is, again, perhaps an individual difference).

It's really good to hear that you feel a little better now you're having more frequent injections 😄.

Good luck with it all and post again if you need any further help or support.

👍

[ecp-swuk]

Hi there again

I had a fresh blood panel run, and my blood count etc. is back within normal range.

Folate is at 17.3

Ferritin is at 61 (up from 30 at the initial rounds, I think this still wants to go higher)

But they were concerned that my B12 is over 2000 at this point, thanks to the self injections I'd imagine.

I mean I could continue loading doses with the B12, but I think this should be ok, my body has plenty to make use of at this point, and can freely generate blood and nerves from this amount. So I think for now it's just gonna be a case of taking iron tablets and some vitamin D maintenance.

The endoscopy results are in, and apparently there's nothing significant to worry about. I have no idea how I ended up some deficient in these vitamins.

Thanks again to everyone here for advice, I've had another 4 or 5 injections since starting this thread.