Help needed for vitamin b12 results!!! urgent

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Hi,

My 33 year old husband has been a mess for past 3 months. He's having severe balance problem, extreme fatigue and bouts of depressions. ENT and Neuro have cleared him. He just got his B12 tested and the results are 207 ng/dl (reference ragne is 196.53-863.39). Now I have heard that levels at 200 are considered deficient. However, I am confused by the unit ng/dl. Couldn't find anywhere. Before we start any treatment, can any one please help me with the units? It is at the lower end of normal but I just need some help please! Its top urgent!

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  • Posted

    I don't know levels but I know mine were in the 80s I had the first lot of b12 jabs the pains went for a couple if weeks then were back it don't help I'm due my next jab in December but they have not worked I'm still in pain don't sleep even tho I'm always so tired docs just don't seem to care about this good luck
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    • Posted

      hi Caroline. so sorry to hear ur still experiencing symptoms eventhough u got initial relief from the injections. there maybe many reasons why the symptoms have come back. it might be that u are not getting enough b12 injections. that is u may need injections closer together. for example u maybe getting a maintenance dose 3 monthly & ur body needs it 2 monthly. have u had a b12 blood check recently?

      Caitlin.

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    • Posted

      Yes they were 500 and some thing my iron is still low I did write a post on her one I started with my levels in there don't know them off the top of my head 
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  • Posted

    hi salvi. i've just picked up ur message. i understand how distressing these symptoms can be. so bear with me whilst i find my notes on the values & will get back to u asap.

    Caitlin

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    • Posted

      Hi Caitlin 

      Thank you so much for your response. If you can help me out in this, I will really appreciate it. To be honest, I find something weird with this unit since I couldn't find it anywhere on the internet!

      I am not too happy with this hospital as they already messed up my husband's cholestrol results (their LDL reading was 34 which was too low for us, so we double-checked with another one and it was 137) so I am not really sure if I should trust the results.

      Nevertheless, the fact that he doesn't have an inner ear problem or neurological problem, I am quite inclined towards b12 and 207 does seem low to me!

      Thanks a lot in advance!!smile

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    • Posted

      hi salvi. below is Dr Joseph Chandy's protocol for treating PA. he's a recognised expert in the field. he lives/works in Co Durham UK.

      if u google his name, it'll take u to his website whereby u can complete his questionnaire. the questionnaire outcome will act as a guideline for PA treatment. u can print it out & take it to ur GP.

      1)Blood serum (B/S) B12 less than 200 ng/L = clinically significant/ severe b12 deficiency.

      2) B/S levels 200-350 ng/L = moderate deficiency.

      3) B/S levels above 350 ng/L = subnormal /low normal but with signs & symptoms.

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    • Posted

      Hi Caitlin,

      Thanks for the info. However, the unit used in our lab result is "ng/dl" not ng/l. Do you think that can be a wrong description? I have not found ng/dl anywhere really!

      I will google the doctor name and see if I can get in touch. By the way my husband's haemoglobin is around 12.8 (13.2 and above reference range) and ferriin at 74.5.

      Thanks,

      Sadia

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    • Posted

      hi Salvi. my sytem is allowing me only short messages. this is the equivalent levels in the new 'measuring' values: i.e. nmol/ml.

      1) blood serum levels (B/S) of: less than 148 nmol/ml = clinically significant /severe b12 deficiency.

      2)148-259 nmol/mL = moderate deficiency

      3)above 259 nmol/L = subnormal low 'normal' b12 but with signs & symptoms.

      hope this is useful. pls feel free to get back to us/me if u need more info. i don't want overwhelm u with too much info. i have taken this info. from Dr Chandy's website. his 9 page guideline is very accessible & manageable. it would be helpful to take it along with u to the GP'sas some GP's are not well infromed re PA.

      Caitlin

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    • Posted

      Hi Caitlin,

      Thank you once again for all the effort!

      Sorry for sounding silly but is nmol/l is same as µmol/L? Because when I did the calculations from ng/dl to µmol/L, it gave  me the result of 152.

      Thanks

      Sadia

       

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  • Posted

    hi again Silvi. my system is being a right pain tonight, hence the no. of responses. as u can see ur husband has ''moderate deficiency'' PA according to DR Chandy's protocol. however, since he's near the ''severe B12 deficiency pracket'', it would explain his ''marked'' symptoms. he will definitely need replacement treatment. do have a look at page 3 of the Chandy protocol. btw, i'm soooooo sorry to hear what ur both experiencing. this condition presents with such horrid symptoms & it's doubly horrid helplessely watching a loved one going through it, especially when first diagnosed. it is, however, treatable & hopefully he'll respond readily to treatment. pls do use the site here for support & also the PA support group/society on facebook etc. there are so many well informed & supportive ppl on here.

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  • Posted

    Hi Caitlin,

    I am overwhelmed at your responses. I will certainly look at the manual.Is ita available on his website? 

    You can only imagine what we have been going through for past three months. He's never been ill for so long and this unexplained illness has caused him so much of frustration and he slipped into depression. For 3 and a half months, we have been going to specialists, neuros and ENT's as well as eye doctor. Not a single one asked us to get his Vit B 12 checked! Every other thing was tested. Even CBC came normal (And I just found out that it is very much possible to have the HB and iron level normal and still be deficient in B12). Only after I read so much online about the deficiency I insisted the GP to write this test. Now the levels are moderately deficient as I can see. So that may explain his symptoms. He hasn't had any other symptoms except severe loss of balance, weakness in lower legs, sometimes tingling/pain in fingers and the most troublesome part is fatigue. The worst thing is no one at his workplace seems to understand the problem because apparently he looks fine. So he cannot take off from work which is adding to his stress. I am not sure if we should start the shots or continue with B12 supplements. Perhaps a doctor may best answer that!

    Thank you once again for the responses. I suppose these forums are so much more helpful than the doctors really!

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    • Posted

      hi salvi. , i can well imagine how distressing this has been for u both. as u know from experience it's ''not knowing'' what's going on & nobody understanding what he's experiencing that makes this ''hidden but treatable curse'' so distressing /frustrating. unfortunately the Medics are not alert to this condition. so WELL DONE U on finding the causation.

      yes, the protocol is on Dr Chandy's website. it's best that he has the injections cos supplements won't be absorbed if he hasn't got the 'I'ntrinsic Factor'' known as ''IF''. there is a fairly standard regime for the injections i.e. a loading regime of one injection on alt. days X 2 weeks & then one injection every 2-3 months. the latter may vary from practice to practice. the B12 can be taken sublingually (under the tongue) but the injections r much more effective generally speaking. i'm not sure re the 'values' comparisons values but will surf for what i can find. the MAIN thing is that he's been diagnosed & will get treatment quickly.

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    • Posted

      I will probably discuss it with the doctor. Although I am quite sure that when she sees the result, she'll shrug it off as normal. In this part of the world (Saudi Arabia), doctors are not at all educated on simplest of things! I forgot to mention that when the Neuro did the MRI, the radiologist mentioned that a small foci of bright intensity could be seen but needs verification through contrast MRI to rule out any "demyelinating" disease. Now the demyelination thing scared me at first, but now when I try to connect the dots, it does seem like B12 deficiency- I dreaded MS but I suppose with no other symptom and clear b12 serum test results, the b12 deficiency seems to be the main cause.

      I feel like getting myself and my mom tested too for B12. Both of us are not much of meat eaters and have hypothyroidism too. Considering how sneaky this deficiency is, it's better to get tested earlier! Oh yes, I am deficient in Vit D too!

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    • Posted

      hi salvi' i'v been looking for ''values translation'' but without success. will search again tomorrow.

      re Doc. i don't think she'd ''shrug'' it off. it's a very debilitating condition & once u've unearthed the cause, she'll HAVE to do something. She'll have to find out what has caused the deficienct whether PA or other cause. and of course Vit B12 costs as little as 60 p in UK & probably the same in the SA. do bring the Dr Chandy protocol along with u, that'll help Doc as well.

      however, if she does refuse treatment either go to a different Doc or u can find ur own supply of Vitamin b12 & treat him. btw, i have tried to get the ''values comparison/conversion'' but without any luck. i'm a tad ''foggy brained'' presently, so will try again tomorrow.

      re Vit. D deficiency u can get sublingual Vit. D which is effective. however, ur Doc should prescribe for u , either oral replacemnt or Vit D injections. insist on help & they usually respond. keep us posted. all good luck with the Doc. be persistent.

      Caitlin

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    • Posted

      Thanks Caitlin,

      I've already started him with Methylcobalamin 1mg daily as one of friends who is a doctor, suggested I should atleast do this for now. It's oral and not sublingual I suppose. But I suppose anything's better than nothing.

      The thing is many physicians think that at this B12 level that my husband has, it is rare to have such neurological symptoms. My own aunt who is a neuro suggested that he can't have balance problem because B12 isn't too low. So I am kind of confused because everything I am reading online now supports my gut feeling- His symptoms are caused by B12 deficiency! I am flying off to my home country next week and hope to see better doctors there!

      Don't bother too much with the values. I personally think the values used here are wrongly put in. My guess is it should have been ng/l instead of ng/dl. In any case, the result is at the lower end of normal so it is a deficiency. So, don't sweat on it! You have already been of immense helpsmile

      Shall be in touch and update you. 

      Thanks a bunch once again!! Hugsxx

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    • Posted

      Hi Caitlin,

      Trust you are well. I just wanted to update the B12 results of my husband. I came to my home country Pakistan and checked his B12 serum levels-which are at 284 pg/ml. I had already started him on methycobalamin 1500 mcg daily a week before. I don't know if that worked or it's a unit difference-the earlier result was in different unit. In any case, he's started on shots-loading doses initially. The doctor here was hesitant but on my insistence he's started him on 500 mcg IM shots every other day, so there will be 10 shots in total. What also happened is that he is apparently deficient on Vitamin D too. His Vit d was at 11 ng/ml or 35 nmol/l. Anything below 20ng/ml is deficiency. So he's sstarted on oral drops as well. Perhaps the fatigue he's facing is a double impact of both B12 and Vit D deficiency? He's taken one shot as of now only so I dont expect to see recovery very soon-not before atleast 5 shots I suppose? By the way, we met a famous neurologist here and when we told him B12 results, he brushed that aside saying "you are fine in B12!". I have given up on doctors here and am really counting on shots to work!

      By the way I got my serum B12 tested too and that came at 303! Should I take the shots also? We are not able to get sublingals here.

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    • Posted

      hi salvi. nice to catch up. hope ur keeping on top of things with all the travelling & all that's happening. that's an interesting comment from the neuro chappie re the b12. my gut response to that is, the top bods tend to look for the ''complicated'' & miss out on the simple i.e. b12 deficiency. they probably think it's an extinct disease in the 21st century. meanwhile, there's a 'quiet' epidimic happening behind closed ears/minds.

      i think the b12 replacement injections over a longer period will probably mean, that more b12 will be absorbed i.e. less passed out in the urine. from reading the reports on here, my guess is that his response is more likely to be gradual rather than immediate. apparently at levels of 200-500 pg/ml it's possible to have b12 deficiency symptoms, so injections for yourself sound sensible, especially if your're having some of the symptoms. i have sent an e-mail to Dr Chandy's office asking if there's a conversion table for all the different b12 values. it can be very confusing, especially if one's maths are not too hot like mine lol???

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    • Posted

      Hey Caitlin,

      Well I am on really downside these days. You see, my husband has had 6 injections so far (they do 500mcg methylcobalamin every alternate day-10 shots in total) and he is not seeing any improvement, Meanwhile, he is also taking his Vit D loading doses. He's still having balance issues and is extremely fatigued. He seems to be not trusting the B12 thing now, as perhaps he thought it would do some miracle immediately, despite me telling him it will take time. The thing is we are on vacation here but he's been busy shopping around, meeting friends and family and basically spending little time resting and more on roads outside (not a very healthy traffic here in this metropolis!). I did tell him he needs to rest completely but he won't budge. Now everyone seems that I have been just toying around with this B12 thing and that his problem may be something more serious which I have been ignoring. It's like every person is giving me a different advice! I am at a verge of breakdown really as I have started fearing if I am putting his life in trouble by masking his problem with B12 deficiency? Every thing I read or come across points to his deficiency. But no doctor, no specialist is paying heed to what I am saying and I just don't know where to bring in evidences in my favour? I got my parents and aunts to get b12 tested too and their levels are up 500. So far he's the lowest-after me. I don't know what should I do. I've bought this new B12 liquid (has b-complex, folate etc) and B-12 in it is about 5000 mcg. I am giving him that too in between shots. I feel kinda helpless, frustrated and sad at the fact that my own dear ones are losing their trust on me-because no doctor and no expert would trust mesad

      Don't know what to do and where to go:s

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    • Posted

      hi Salvi. i'm so sorry to hear u beat urself up like that. firstly u've gone beyond the call of duty to help get ur husband's health sorted. u've done everything possible, from advanced research i.e. educated urself to Medics level in respect of what might be amiss with his health. u've taken him to the top Neurologists, have had all the indicated tests completed, so there's NOTHING that u have left out. u musn't BLAME urself for any failures. so far, the Medics have not been successful in getting to the bottom of things as yet. however, it's most likely to be the b12 since all the other tests have come back negative.

      re the b12 injections Salvi, i think it'll take much longer for his b12 stores to topped up. from many of the posts on here, it sounds that it can take some time especially if he's had the symptoms for some time. so i'd say have patience and he should be resting. BTW, it's taken me nearly 2 months of 500 mcg subQ injections on alternate days to to feel any response from the b12 in terms of symptom reduction. if his energy's depleted he should be resting up and giving his body time to heal & recharge. is he on an all round good vitamin b supplement. for his fatigue he could take some CoQ10 supplements & and an 'activated' form of b3 (NADH) that works synsergistically with the CoQ10 to produce energy in the Krebs cycle. NADH is also very good for stress/anxiety also. it's often depleted when ones been through a lot of stress. so Salvi PATIENCE for now is necessary to c how the injections work out. have u thought about the b12 oils at all?and has he had his Thyroid checked - that is the 'Thyroid Stimulating Hormone', T 3 and T4 levels. he maynot be converting his T4 to T3?

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    • Posted

      Hi Caitlin

      Thanks for ur support. To be honest, my only support comes from you people. Everyone else seems to think I am just foolin around. Anyways, guess that's what happens when u try to take unconventional route. 

      I wa recently asked that the difference between my husband and mine B12 serum levels is not much (his being 284 and mine being 303). Why is that he s being symptomatic and i am not? Perhaps i may have had symptoms that I have ignored for sometime (the unexplained palpitations an chest pains that I have sometimes). And maybe because he is also extremely deficient in vitamin d? Do my reasons make any sense?

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    • Posted

      hi Salvi. ur doing great. it can't be easy looking after a little one and an unwell husband whilst ur own health is calling out for attention. ur b12 levels are low & need addressing Salvi.

      the likely reason why u & ur husband are responding differently to low levels of b12 is possibly cos we are all as different at a chemical level as we are physically. therefore, each of our susceptible/vulnerable systems/organs are likely to respond first. for u it might be ur cardiovascular/nervous system. for hubby it's likely to be his 'energy' levels or whatever is causing his unsteadiness.

      a whole lot of other symptoms may exist at a subclinical level to present overtly when the depletion is more marked. chris has gone into detail re the 'methylation' etc pathways and how they can differ in functional levels casuing different symptoms. sensible options could include: 1) doing an Intrinsic Factor (IF) to check on antibodies & perhaps rule out PA. 2) a more accurate b12 test is the Methylmalonic Acid, but it may not be available where u live, however, it's worth checking at any of the US hospitals. as u know there are many reasons for low b12, so a process of elimination might be a good way to go. meanwhile, i'd suggest to hubby to continue to have whatever investigations his Doc suggest. that'll keep his mind at peace & perhaps by then the b12 will begin to yield some overt results. regardless what amiss with his health the b12 injections can only be of help. do give it some time. btw, it took nearly a month for me to see results - a measurable reduction in chest pain & palpiations. and maybe to have a little break from it all over the x-mass holidays.

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