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!
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
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
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!!
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.
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
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
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
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.
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.
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!
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.
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!
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
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 help
Shall be in touch and update you.
Thanks a bunch once again!! Hugsxx
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
eYou are obviously pretty with it and on to it. I don't think your own country's drs will prove much better in general. One of the problems is that many symptoms are multifactorial or multicausal and a lot of the pathways unknown or poorly understood by most medics. Think my car won't run and you are not a mechanic. If you were one you would make it go, versus saying I can't find a problem oer try this and if it doesn't work go away.
I won't go into personal details but it can take decades or many decades to get something picked up. On the other hand sometimes it might be a week.
Assuming the simplest case you or he should if applicable get a response rapidly to an injection of hydroxycobalamin. That oral dose is a bit low.
If that doesn't help then sublinqual methylcobalamin dicobenzide quatrefolic and L carnitine fumarate may help. The difficulty is that many things eg zinc magnesium various B vitamins, lecithin etc may prove to be coexisting deficiencies that are uncovered once one limiting factor is removed.
I wonder why he is mildly anaemic.
Two some neurological signs happen but the balance thing seems a bit pronounced. Hopefully and presumably the specialists have eliminated some things.
Possibly he has some gluten intolerance but some tests can help establish that rather than assume it.
Unfortunately often there seems to be no easy and clear cut resolution. Hopefully there is i.e. what works for him. If not then he at least has an able supportive partner. Best of luck to you both.
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Hi Chris,
Thanks for your reply. Well he's been thourough investigations by ENT, Neuro and Opthamologist. ENT did quite a lot tests including ENG/Caloric testing, VEMP and many others. Neuro ran an MRI and it was clear also. Opthamologist also suggested that there is nothing wrong. He was also on more than a month's course of Serc medicine that is used to treat inner ear issues.
So no other problem exists so far. It's just the B12 levels that have come as flagged (not by lab but by us!) till now. So, I am thinking there's no harm in trying out the shots especially since there are barely any side effects.
I am not sure why he is mildly anaemic. Perhaps that comes with the B12 deficiency?
It is largely the balance issue that is most troublesome and no other test can identify any issue with any of the balance systems within ear or brain. The fatigue, is the next debilitating issue.
Let's see if the injections work. I hope this is the solution and will eventually bring our ordeal to end. Keeping my fingers crossed!
Thanks for all the support
hi salvi. it sounds that the Medics have done a thorough job in respect of the neuro tests. i'd therefore, feel assured that it's nothing significant in hubby's neuro system that's causing the dizzinness. i'm sure they have thoroughly checked his B/P??? as Chris points out, so many of the PA /B12 deficiency symptoms are multifactorial or multicausal and a lot of the pathways unknown or poorly understood. it's difficult, therefore, to pin everything down to a ''neat''/''tight'' packet of symptom diagnosis. furthermore, whilst the core symptoms of PA or B12 deficiecny will be similar in each person, there will be a plethora of lesser symptoms that will be unique to each individual - each person's vulnerable systems/organs. in ur husbands case it may well be that 'dizzinnesss'' is his 'genetic pecularity'. for example, i have severe (non age realted) chest pain that's responding to subcutaneous b12 treatment albeit slowly. i don't think chest pain is a core symptom of my 'low normal' b12 diagnosis. i consider thats a symptom unique to my genetics - (strong family history of fragile (weak) hearts). don't know if u have read on here re the B12 oils that are available from the US. reports on here suggest they are very effective. for example if there are other hidden nutritional deficiencies it won't matter as the oils are an ''activated'' form of b12. therefore, the oil form is not dependant on the other nutritional 'substrates' s it's already activated. it's just another option if u don't get the B12 injections.
let me know if u want the web details.
Caitlin.
Hi Caitlin,
Would really appreciate if you can send me the weblink for the oil.
My husband is hypertensive and he was diagnosed with it about 3 years back and does take medication. However, it is unlikely to cause these symptoms as he's had it for many years and never had these balance issues.
On MRI though, the radiologist mentioned small foci of bright intensity on flare-something like that-within deep white matter. The neuro said I can't even see that foci and it is way too tiny. Ppl with migraines have more lesions than this. He had suggested MRI with contrast just to be on safe side, which we'll get done. But he ruled out any dangerous stuff. One possibility can be my husband's hypertension and he panicked at the time of MRI. The other possible thing that I just found out that B12 deficiency can cause such lesions which may appearl on MRI. And the location-within frontal deep white matter is usually associated with B12 deficiency. Am not a doctor but this is what I found out after searching rigorously on net.
However, at the moment, I suppose there s no harm in starting the B12 shots and see if theres any improvement.