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

    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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    • Posted

      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 supportsmile 

    • Posted

      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.

    • Posted

      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.

    • Posted

      hi salvi. the system doesn't allow ''cut & paste'' of other websites, so i'll ''spell'' it out for u and hopefully it'll allow it through. it's b twelve (in figures) dot com . get back to me if it doesn't come through to u.

      there's a woman on here 'MadgeC' who suggest the oils. i'll see if i can cut & paste her comments to u. she sounds VERY knowledgeable.

      C

    • Posted

      First, whilst B12 (of whatever type) is normally taken up from the intestine after it is bound to IF (as you rightly point out), it is then bound to a receptor on the gut wall. It then is processed within the cell, removed from IF and is bound to TCII. The TCII is produced in the gut epithelial cells and in other parts of the body. What you need to realize is that it is only when B12 (of whatever type) is bound to TCII that it is taken up by any or all of the cells in the body. Thus, technically you don't need to have it bound to IF, but to TCII. If you put the B12 into the oils and rub them onto the skin the B12 can bind to any TCII that does not have B12 on it. Now this TCII (free) is called apotranscobalamin, when B12 is bound to it is called holotranscobalamin. If you are not getting B12 from the intestine because you have PA, then there is a lot of free (apotranscobalamin) transcobalamin circulating and is available for binding to B12. This is why injected forms of B12 work, thus injected B12 does not bind to IF either. So if you can get your B12 onto the free B12 binding protein (apotranscobalamin) and make holotranscobalamin and make sure that there is always B12 bound to transcobalamin it will in fact stop you having the symptoms of B12 deficiency associated with PA, and then indeed you will be able to have a normal energetic life. Entirely your choice however. You can find out more about holotranscobalamin on PubMed. Last time I looked there were about 150 references, but that was about a year ago, so I am sure that there are more now. Cheers.

    • Posted

      hi salvi. just sent u madgeCs comments on b12 defiiency - she's the person that suggest the oils from her own experience. btw, i'd say hubby's dizzy spells are most likely to be due to the hypertension. it's a classic symptoms.

      btw, again . i think ur doing an AMAZING job in sifting all this b12 info. u seem to have an AMAZING skill there - not to mention surpassing the Medical experts in ur medical knowledge & medical detective work???????

    • Posted

      sorry salvi . it's b twelve (in figures) oils dot com
    • Posted

      Lol thanks Caitlin. I'll take that as a complimentsmile.. Well I suppose interest in the medical field, with a few doctors in family and my own research background just helps me get into the finer details (I have also been a fan of detective movies lolbiggrin

      As for my husband's dizziness, well he's not kind of dizzy dizzy, if you know what I mean. It's more of feeling of being off-balance all the time. Not always in head. It's like being unsteady, not able to stand on the feet. He feels like his legs are weak and shaking and he has to make an effort to walk properly. He says that he feels his whole body seems shaky. He's never exactly felt "dizzy", no spinning sensation, no vertigo. Just very unsteady and has trouble walking. I do understand that hypertension can cause dizziness but he's had it for really long time (runs in the family) and that dizziness is different from this unsteadiness-which I have read is the sign of b12 deficiency.

    • Posted

      hi salvi. yes BIG compliment. it feels u have great facility with both brain hemispheres. most ppl tend to be either left or right hemisphere 'noticbly' dominant, either detail ppl. big picture ppl.

      aaaaaaaaaaaaahhhhhhhhhhhre differentiation between dizzy n unsteadyness. i had understood the former, v much a B/P thingy & as u say 'unsteadyness' is v. different & sounds more typically a B12 deficiency?

      Caitlin

    • Posted

      Hi Caitlin,

      Initially even I thought it's that 'typical' dizziness. But then I sat down with him and made him explain what it feels like and then realized it's not the dizziness rather unsteadiness-more like ataxia. He's struggling to maintain balance. And from what I did read on B12 deficiency, this is one of very prominent neurological symptom of B12 deficiency. And at 207 result, this is likely to happen.

      I am just pinning my hopes that the shots will make him feel better and my gut feeling is right. He's now desperate to feel good. He's already much more at ease and already feeling better  now that it is much clear that it's just B12 deficiency that's treatable and not some horrible terminal disease (he got so hopeless that he started thinking of worst of diseases-cancer for example). I really hope it's a change from now on! 

    • Posted

      hi salvi. think ur spot on there. poor chappie. he msut have been through hell, not knowing what was causing it. delighted to hear he's turned that corner in his thinking/feeling too. be patient with the b12 response though. from what i have read on the forum on here, the reponse can can be immediate for some, slow for others & even delayed in those who have had the deficiency for a long time. but that doesn't mean it's not working. he's very young so he's more likely to respond well.
    • Posted

      Hi Caitlin,

      Well yes he's been through a lot and considering how frequently he dips into depression (he still was going through mood swings even after the test!), I have more reason to believe its the b12 that's culprit-since it does cause such mood swings. You know for a person, who's never been sick beyond having slight fever, in his entire life, being ill and feeling unwell for such a long time is nearly unacceptable. He just can't accept that he's been ill for that long. He also suffers from guilt for putting me and our 3 year old son through rough time and hence requires immense amount of counselling-Im doing best I can and more than him, I guess it's me who's looking for the b12 to work. I am taking a chance again since I am not a doctor-just going by the gut feeling and ofcourse, the test results. I hope the jabs start working soon, although I have briefed him on how it can take some time with some people. He's ready for it. So let's hope this is the answer to our such long ordeal!

      The support this forum has provided me is such a motivator really! So thank you once againsmile

    • Posted

      hi Salvi. ur nearly there. once he starts the b12 injections he'll begin to 'psychologically' feel better as something IS being done. the physiology will follow. indeed mood swings & depression r part of the B12 deficiency picture. the brain is being starved of nutrition.

      i don't know if you are aware of the stress relief technique called Emotional Freedom Therapy (EFT) for short. it's also known as ''Tapping''. google it and u'll get all the details . it's easily learned & applied. and a great ''emotional build up'' defuser. have a look.

      C

    • Posted

      Hi Caitlin

      I will surely look into it. By the way, I recently stumbled upon a documentary on B12 on youtube featuring Sally Pacholok. I don't know if you have seen it but it is such an eye-opener! Even I am thinking to get my levels checked as may have tendency. I am not much of a meat eater, have hypothyroidism, get frequent palpitations and sometimes weakness in my limbs. Might not be deficient but no harm in checking. Oh and I am vit D deficient too!

    • Posted

      Salvi: ah the old 'not much of a meat eater' does tend go along with low iron/b12 etc. ( i used to be a strict vegan). thank u for the u/tube reference. Salvi, as ur getting ur b12 checked, have them check ur b2 as well. apparently there's a direct link between b2 deficiency, hypothyroidism & b12 deficiency. as mentioned before, there's a contributor on here called 'MadgeC' whose very scienctifically informed & has b12 deficiency. she sent me a very interesting research based article on same. if u want to read it let me know and i'll cut n paste' it onto u. btw, why don't u have a full vitamin/mineral check whilst checking ur b12. i did a mitochondrial profile (blood test)and found i was in the danger zone in b3 deficiency & Co-Q10 deficiency. the latter is an excellent energy booster & b3 in the activated form 'NADH' form is excellent for anxiety. as usual u need a reputable suppliers with both as both are unstable and need specific manfacturing & storage protocols to main their efficacy.
    • Posted

      hi Salvi: this is a repsonse from 'MadgeC' to someone who wishes to know which form of b12 injections is a ''pro-vitamin'' as opposed to an ''activated'' gotm of b12 .

      ''do you know what form of vitamin B12 you are using. It is most likely that you are using an inactive "provitamin" form cyanocobalamin (CN-VB12). Now the thing is that if you use megadoses, you can get a tiny amount into the circulation, which will raise what they measure as B12, BUT, it will be the same form as you are taking. Thus, it will be cyanocobalamin. If you are one of the 50% of people who can't convert CN-VB12 to the two active forms of the vitamin, adenosyl-VB12 (adenosylcobalamin) and methyl-VB12 (methylcobalamin), then you are absolutely wasting your time and money using it. In addition, if you smoke, you can't convert the CN-VB12, and for many people who are very low, they also can't convert CN-Cbl to the active forms due to problems inside their cells. If you have a mutation in one particular gene that codes for the MTRR enzyme you also can't convert CN-Cbl to the active forms. In addition, you now have the inactive CN-Cbl floating around in your body, which will interfere with the uptake of normal dietary adenosyl and methylB12. You need to take the mixed Ado/MeCbl forms of B12, but it will take some time to displace the inactive CN-Cbl. I can tell you where to get it if you are interested. Good luck, oh and I would try to find a doctor who understands this''.

    • Posted

      Hi Caitilin,

      I actually got him started off at Co-Q10 recently along with omega-3. I am not sure what's happening but we recently got him tested and his serum b12 levels are at 2000 pg/ml now! This is whote I replied to Chris below and I am copying it here for you as well. Maybe you can help me out a bit too:

      I just got him tested again. He was on 500mcg methycobalamin IM's every alternate day for past one month almost. In between the IM's he was also taking 1000mcg sublingal methylcobalamin and sometimes I also gave him B12 liquid-That's 5000 mcg of b12 along with folate (albeit with a combination of methylcobalamin and cyano). His levels came up now at 2000 pg/ml! Don't you think it's a lot? Further, he tells me that he has only seen tiny bit of improvement and that too in the fatigue not much in the balance. I was told that balance issues will go in the end. But I am sort of worried now that since is his serum B12 is so high, why isn't the improvement coming? Can it be because of low vitamin D? Or it's because it takes time for B12 to get absorbed into the tissues? I am also giving him Co-Q10 and omega-3 supplements, and occasionally magnesium. 

      ​We don't have MMA or Homocysteine tests here but I am kind of confused as to where I am going wrong?

    • Posted

      hi salvi. happy new year. hope u had some time to recharge over the winter break?

      salvi: ur doing NOTHING wrong. ur doing everything that's possible to do right now. for some reason my system has slowed to almost stop on this site, could u e-mail me off site.

      caitlin

    • Posted

      hi salvi. try this: c a i t d o t m u r c o at g m a i l d o t c o m

      caitlin

    • Posted

      Has your husband had his sodium levels checked ? My mums sodium levels dropped due to medication she was on and was very unsteady. She has also been put on B12 injections too .

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