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Pernicious Anaemia Society
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Yippee: Some recent improvements and 1 question (or maybe 2)

Have been self-injecting for a week now (every other day) and taking 400mcg folic acid too, since it was on the lowish side.

My hair is no longer falling out like spider-webs on my hands every time I wash it, my fingernails are improving, too. I'm aware that this could be folate level increase.

Best of all, I don't fall asleep in the afternoons or evenings, and even the yawning (overlapping gulping yawns, like a fish out of water) seems to be reduced. Have been out walking a fair bit the last couple of days. Seem to have lost the ability to run: no shock absorbers (?) so knees and base of spine really just can't do it.

Back, hips, knees all still very stiff and achey especially first thing in the morning before having a bath. Soles of feet no longer hot and stiff in morning but spikey heels instead, which I'm calling an improvement. Might even be all that walking !

Brain likely to take quite a bit longer I think: memory, cognitive problems, sensory overload especially sounds and fast movements, mood swings, personality changes, irrational, irritable, impatient and argumentative mostly but not crying now anyway. Or is that just because I haven't seen a specialist in a while ? That always ends up in tears.

Recently a few times felt tingling pins and needles on left side of scalp, numb to touch. Is this an improvement do you think... an awakening ? Anyone got an answer or recognise this themselves ?

Have made a few errors with SI, but nothing to worry about. Can never remember where they were to avoid in the future anyway. I watched a few videos but they all did it differently so I got confused (easy) and couldn't remember it all by the time I got back from the library. It never hurts, which is a good thing. My only problem is position: where and how to avoid small veins and nerves. Had one (very short) spurt, and one (very slight) spasm- just found a new position, but not really learning my lessons from this because of poor memory! Any advice ? Tattoo myself with dotted lines like a side of beef on a butcher's poster ?

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I am so happy for you Cherylclaire and hope the improvement continues.

Well done with the S.I.


Thanks, Clivealive, good to know that you are still always the first there with words of encouragement !


you could always mark it with a permanent marker. Red for spurt, black for spasm.


How about two dartboards, one for each leg ?

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All sounds very positive - well done!

If you keep going you'll get the hang of it better and your mind will improve which will help too.

I've done more than a couple of years of daily SI and still get "the wrong place" sometimes. Don't worry - you are unlikely to do any damage that won't repair and just think that tomorrow you have a good chance of it going better!

It takes a long time for the deficiency symptoms to go completely and you will continue to improve for years.

Be aware that on daily SI you may need a broad spectrum multivitamin and mineral supplement plus up to 5 mg (5000 mcg) of extra folate, and additional potassium and magnesium, maybe iron and a wide range of protein sources for that level of B12 to work properly, ongoing. If you don't get enough of the other things you may feel you are good to start with but then other issues develop and the B12 deficiency symptoms return because you have used up your body's reserves and depleted them.

I suggest you Google these and see what you think you need and what sources you are happy to eat/take to keep deficiency symptoms of these away.

Well done and good luck!


Think I overdid it yesterday, impatient as ever, and so not great today. This might be in part to do with not having sufficient "additionals" as you pointed out, in part doing too much too soon, and perhaps a couple of glasses of Pinot Grigio in the evening was pushing my luck !

Does anyone else find that they can't drink alcohol at all ? Or am I just a lightweight ?

Also, folate or folic acid ?

Thanks for the advice- I know that you have done really well and that alone gives me hope !

PS: injecting every other day.

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I haven't heard of anyone who can drink much once they are B12d! Half a sniff and I fall over! πŸƒ

I believe folic acid is converted to folate by the body for use in that form in our cells.

Most people do well on folic acid but a few, like me, have a problem with that mechanism too and need to supplement with methylfolate. A very few need folinic acid instead.

Don't worry - in time you learn to pace yourself and/or accept that if you have a busier day then you'll need to rest until you are OK again.

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Thanks a lot for your advice, deniseinmilden , I am now taking multivitamin and mineral supplement (Biocare) and additional folic acid.

Went out at the weekend.... twice !!!

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Well done!

Keep going (and resting and going again)!

Keep listening to your body and make adjustments to suit it.

Good luck! x


So pleased for the improvement. Well done you!

I am still losing a lot of hair.... handfuls when washing it and it just drops off.... coarse and brittle as well as looking dull, used to have wonderfully thick and shiny long hair. Have cut it short now, but still falling...

As for drinking alcohol, that is a thing of the past. have not touched a drop for just over a year now. Not feeling well, loss of balance, etc. I decided drinking alcohol was not something that would help me recover while SI. Also found coffee made me feel worse... stopped drinking it, felt a little better and started drinking freshly made coffee again which I love but feeling pretty rough again, so have stop drinking coffee once more.

Good luck with the treatment and try and take it a little easier, give yourself a chance.


No coffee, no alcohol then ? How about if you look on coffee as a treat ? Don't have it indoors, but go out for an occasional coffee ?

My mouth is very bad : lips splitting and cracking and very sore corners. BUT feeling okay, so not that bothered. It depends on what other symptoms are also playing up I expect....

My hair seems to have stopped falling out- I used to get scared to wash it sometimes. No woman wants to be mistaken for Frasier Crane. I'm expecting the folate to kick in and save me from that fate. Any time soon will do.


Good news about your hair. Hope it remains so. Not such luck for me... am rather concerned and as you mention in your note I too dread washing it... sometimes wait a week, which I do not like and never used to do but losing so much hair each time it is washed is frightening... will I become bold? No desire to compete with Frasier Crane....

Used to get cracks in corners of mouth, this did improve with B12 injections, so perhaps you will get the same result in a little while.

Alcohol and coffee are a thing of the past.... am so fed up of feeling so ill, just having the chance of feeling even a little better would be so welcome... Good luck with your treatment.


My GP always told me she thought that the hair loss was more to do with folate deficiency than B12: don't know, but certainly it improved when folate and ferritin were added to the mix for 3 months. Folate had been around the 5 or 6 ug/L mark and rose to over 20 (range 3.90-26.80)

Folate level has since dropped to about 9ug/L although I would say diet has been good.

Now trying for a better and more permanent level of improvement than that, so have reintroduced the folate (as folic acid tablets) -and leaving the iron for now as I'm uncertain of my current levels and know that it needs closer monitoring.

Have you had your folate level checked recently ?

PS: Sorry, clivealive , I know that really doesn't sound right from anyone but you.

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At least your GP tried to give you an idea of what the problem might be... mine has so far said nothing regarding the hair problem (as well as for most of anything else), except she said I was slightly hypo! But no idea really...

I have had my folate levels checked recently. as a matter of fact I have just writen a new thread with my blood results so feel free to check.

Do hope you can improve still further.



I did have a look and am no expert in interpreting blood test results.

Folate level look fine, so does ferritin although you have had to work a bit to get them there. It's keeping them at these levels that seems a problem sometimes, even with a good diet.

Foggyme said ferritin ideally around 100 mark and folate in top third of range.

Many red blood cells but Mean Cell Volume low... ? Someone on here will know exactly what to ask your GP about that. As for the hair loss? Put on a pink swimming hat and scare her into action !

Good luck.


Hi CherylClaire,

Have decided to take iron supplements again in order to maintain an optimal level and will retest in a month or so to see where the level is. Taking VitD again, but to my amazement only 800 units, as GP told me that's what the "recommendation" is! Was on 1000 units before I stopped taking this, a month ago and had been for years. So will need to research this and find a better supplement. Hopefully I won't feel so weak anymore once everything kicks in again.

Also awaiting date of appointment with private endo so perhaps my thyroid problems will be addressed as they should. Hair might stop falling off then, once I have the correct adequte trearment... I hope.

As for RBCs elevation I have been thinking for a while it might be a sign that my body is trying to obtain more oxygen than it has been getting fr quite a while now.... This needs to be investigated. Why are GPs so slow (or unwilling?) to pick this up??

Thanks for your input, and take care. x

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You too JGBH and let us know. x

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Docs always prescribe too little VitD. 800 iu's is a maintenance dose for a healthy mouse 😊 Living in Crete I take 5000 iu's daily except when away ftom home. Your level needs to be around 100. City Assays Birmingam test for under 30 pounds 😊

Hang in there 😎

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Glad to hear that your symptoms are improving.


Thanks, Sleepybunny . Still a balancing act, but at least it's my circus now !


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