I'm newly diagnosed B12 deficient and feeling very unwell

Hi Caitlin, Thanks for your post. I wastold about being B12 deficient about 2 weeks ago and have just had my second injection. Truth is I don't feel any better yet except maybe in my mind having  been told that I didn't have any cardiac pointers in the blood test, so I am hoping that B12 supplementation will make a big difference. I will try to find out what levels the blood test showed,I don't know if the doctor will co-operate but I will try. I suspect I may be low on Vit D too, as I was told that about 4 years ago when I  lived in England, but I never really kept taking any Vitamin supplement. I will look at CoQ10,do you mean the capsules? Thanks again Caitlin, best wishes.

hi Bigbsy. yes, the CoQ10 will be in Capsule form. some , however, are sold in powdered form (in a capsule) but are not as effective as the oil in capsule. i had to play around with the dosage to get the best effect & indeed with the manafacturers untill i found one that consistently delivered the same effect. i'm taking them for 'mitochondrial failure', but many ppl take them after the 50 age mark as our natural production tends to drop off then. Vit D deficiency can leve us v. exhausted on it's own. have a google of the Viatmin D council web site or log onto to the Vit D section of this site. i would have a Thyroxine screen done if at all possible. Thyroxine anamolies often present with b12 def. it'll probably take a while before u feel the effects of the b12 as the body stores need to be replinished & this takes a while . alot of the 'bolus' IM dose of b12 gets lost to the urine. the body can only absorb so at a time. but u will begin to feel better.

Thank you Caitlin for all the information in your last post, do you think a 1/day good over 50s multivitamin would cover all the Vitamins and minerals needed when you are short of B12. I take M....bionta. Secret squirrel in case I am not supposed to say Brands! Best wishes.

hi Bigbsy

hope uv'e had some uplift moments since commencing the b12 injections. if not, don't panic, it can take some time to reverse the damage done by the deficiency. however, those moments do creep up on us eventually? each body has it's own individual pace & rhythm in terms of repair & recovery, so always difficult to put a time on such things.

re: vitamin intake: the one a day vitamin pills are fine to prevent illness deficiency but not strong enough to reverse disease. coz the body has been depleted to the point of illness expression (b12), it'll have put a lot of demands/stresses on other nutrients/systems & likely to be depleted all round. it'll therefore need ''therapeutic'' vitamin doses to repair damage/deficiency. i'd say a good quality b complex plus a good qaulity mineral complex is advisable a couple or 3 times a day until u begin to feel better. then revise the dosage downwards. of course the diet is v. important, even if ur not absorbing very well, some nutrients will always get through.

C

Hi Caitlin

I had the 1st uplift moment tonight! I found myself trying on coats from my wardrobe that haven't seen the light of day for ages. I guess that qualifies because I had a very bad day yesterday, in bed most of the day,so all over the place at present! Thankyou for the advice on vitamins, it all makes sense. If I were to start some extra vitamins now, not the multivitamins, do you think that would upset any folate levels for the blood test at the end of the five weeks of jabs, I want to get a true reading then. Maybe I should wait until I finish the loading doses? I really appreciate your time and trouble posting to me. 

hi bigsby. really pleased to hear the 'uplift' moment has occured. that's great and v. welcomed i'd imagine. sometimes ppl feel so ghastly with b12 def. and it takes so long for that moment to occur that they sometimes begin to doubt recovery is possible or that the injections are actually having the desired effect.

i truly don't think that starting on the quality multi vits would have THAT much of an effect so quickly, that they would measurably skew the blood results in 5 weeks time. unless u have been MEGA supplementing, ur Folate should be around normal or slightly above or below normal. think high levels of Folate occur when we have been MEGA supplementing in the presence of b12 def. Folate is necessary to metabolize b12. they work together. it's also likely that ur b12 def. is due to malabsorbtion rather than PA. so the absorbtion of the nutrients is likely to be deminished too. hence the need to keep feeding the body regurarly for optimal absorbtion. however, having said all that do what u feel comfortable with. it's really good that ur showing recovery signs already. btw, don't give urself a hard time about having to stay in bed coz the body needs lots of rest at times of depletion & when 'run down'. fresh air is great but good quality stress free, guilt free, switch off rest is invalauble to the healing process.

Caitlin

Thanks Caitlin, trouble is it's not guilt free! It would be wonderful if it were, but my husband really doesn't understand how I am feeling and he reckons that stopping in bed is not good for a person suffering from supposed "depression", because that is what my family think is wrong. Their view might change if I have a miraculous turnaround, maybe not. I feel it's me against the world at present, with the exception, of course, of tonight's uplift moment.Your posts help so much.

hi Bigsby. hope that 'uplift' moment has continued to expand to a few hours/days maybe more.............?

sadly, due to lack of awareness and public health education of this debilitating condition, it can sometimes get reduced to one of those ''pull your self together conditions''?

to make an analogy, albeit a crude one, if one's car was leaking petrol/diesel, i don't think we'd expect it to take us to the shops, do the daily regular runs to the local town/country, to the extended family etc etc. it would be out of action, down the garage in the sick bay being nursed back to health by the 'expert' mechanic.

we wouldn't be saying it's lost it's mogo & needs to pull itself together. we'd be looking for the CAUSE of the (lack of mojo) i.e. the leak and repairing it.

thank heavens there are some public awareness campaigns under way to bring this silent insidious condition into the medical & public arenas. it will take time. but it's slowly happening. depression is a byproduct of b12 deficiecny not the cause of it, not to mention all the other 'viscous cycle' of symptoms wrecks in it's wake. the recovery from b12 def. needs lots of time, rest & good quality 'daily pacing' to make a timely recovery. pushing too much , too soon, too hard just slows up the healing/recovery process.

keep the thought of that catwalk in the forefront of ur mind. it always helps to have an uplifting achievable goal in sight.

C.

Thankyou Caitlin, so very much, what a lovely, helpful way of trying to come to an understanding of this complicated, debilitating illness.I will try to pace myself as you suggest and I do realise that it will take time. I will try to find out if I have this IF Factor or I am deficient in B12 because of another reason ie. taking a PPI for years. That will have to be when I next see the GP. Thanks again and very best wishes. 

hi Bigsby. pleased u seem to be going a little less harsh on urself. yes, this IS a PERVASIVE & complicated condition & a neglected & not well understood one to boot.

it would be beneficial to have ur Thyroid levels also checked at the GP's. i don't want to keep harping on about this, but it's very intertwined with b12 Def. often where there's one the other presents. and recovery too, is intertwined & interdependent on healthy levels of what's known as healthy of T3 & T4. sometimes with B12 def. we don't convert from T4 to T3 & this impedes recovery. the symptoms of low Thyroid levels & b12 def. overlap.

Docs tend to just test the Thyroid Stimulating Hormone (TSH) only, which just gives a rough estimate of how the organ is functioning. it doesn't give the particulars like the T3/4 levels do.

i know it's not always that easy to have to keep nudging the Doc in the right direction when feeling low & depleted. however, sometimes it needs to be done. with Docs, i often find that it's good to have someone (whose gently assertive/focused with u if possible) when u attend for an appoinment. it helps dilute that annoying power/deference dynamic that sometimes present a barrier. they also, tend to engage more fully & ask more pertinent questions if there's 2 ppl present.

all positive/healing thoughts going ur way.

best C

Hi Caitlin.

Just needed to tell all my kind friends on here that today has been a Great Day! I woke up feeling well and carried on that way all day,even did some housework,AND, went for a WALK on the beach too! I apologise for the capitals, I know it is bad form,but good for emphasis. I also got my folate tabs, as metafolin 400, and am just going to take 1/day until I get my blood test. Yippee! Light at the end of the tunnel, but I will still take it easy as I am aware there are Days and then there are days. I can't remember feeling as good as I have today, and that is years back, felt 21 again!!!!!!!

Best wishes Margaret.

thrilled to hear that Margaret. may you have many more of the these.

Caitlin

Thankyou Jenny for your kind wishes. I am soglad that you are feeling so much better, you must have been very poorly before they finally found out your problem and hopefully have found the way around it. I wish I could say the same but no joy yet. I have had a reaction to the B12 injections this last week after my last, no. 5. I have had a poorly tummy since Sunday, feeling very queasy all the time, and my scalp has a large amount of bumps and pimples especially around the hair line and on my face and I am not a pimply teenager, I'm a pimply pensioner!  The palpitations have been bad too. All possible reactions to the injections. Waiting now for a blood test. I was out today and am shattered now, but other people have given me good advice so I'm hoping to turn the corner soon. I lived in the UK until 3 years ago, but now live in Eire and believe me the Health Service in Ireland is a very poor relation to the NHS, I 've been waiting for a cardiology appt. for 8 months now, I hope to find out if there are any cardio neurological problems caused by the long wait for a probable diagnosis. My very best wishes to you and thanks again for your kind thoughts, hearing other people's experiences, especially positive ones does help a lot. x

Hi Jenny, me again. I have just read your other post and I see you too have had skin problems . I too have thinning hair and I can see my scalp through my hair right at the middle at the front!! This is something that does concern me and I will be interested to see if anyone knows of anything to help. I have decided to wait until I get the blood test before I start taking a lot of tablets myself. Best wishes, Margaret.