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I have been been diagnosed with low b12 and not feeling better

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Vireo
Vireo

Vireo 

. I was diagnosed with low b-12 ...it was 110 and started weekly injections. I have had four and then I am on monthly injections. I am due for my first monthly injection next week. I have not had one for three weeks. I am taking daily b12 pills. I am actually feeling worse even though I am doing less. I have odd nerve signals and I am very tired. I feel like I am going crazy. Is there anyone out there who can help me as my doctors are vague about what is happening.

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16 Replies

  • caitlin39841
    caitlin39841 Vireo

    Posted

    hi vireo.

    so sorry to hear ur distress. 110 is very low. it's considered severe b12 deficiency.

    so Vireo u are NOT going crazy. it's the b12 deficiency that's making u feel so awful. b12 deficiency affects many systems of the body including the nervous system.

    it seems that u r on what they call the standard treatment regime: a 'loading dose' of b12 via injections over a 2 week period. and then the standard regime of one injection every 2-3 months. i guess they are giving u an injection monthly cos ur levels are very low.

    so what to do:

    1) google b12 deficiency Support Group & u'll get lots of info. there that's helpful.

    2) The GP should do some investigations to find out WHY ur b12 is low. it could be diet/digestive related or Pernicous anaemia.

    3)the GP needs to check your levels frequently until ur symptoms go or decrease. my sense is you will need to be ''assertive'' with ur GP. bring someone along with u. they seem to respond more effectively when there's a 2nd person there.

    4)also when someone's severly depleted (as u are) & have had it for a long time (often undiagnosed) it can take the body some time to restore it's reserves of b12. also, much of the the 'loading dose' injections don't get absorbed as there's only so much the body can absorb at any one time. the excess gets passed out in the urine. it will take some time to have the full effects of the ongoing injections.

    4)Vireo, do have a look at Dr Chandy's protocol for treatment. google his name & it should take u to his web site.

    Caitlin

  • steve1951
    steve1951 Vireo

    Posted

    Vireo, I don’t know what my level my B12 was, but my Dr. said it was low even though I take a B complex. I’m sure it wasn’t as low as yours. He gave me B12 shots on the next two visits before he suggested taking a 5000 mcg B12 lozenge that melts in your mouth for better absorption, once a day. On my next visit, my B12 was high. B12 comes in two forms, one is called methylcobalamin, which is already B12 from what I found on the web, and the second form (I don’t remember the name) is converted into B12 by your body. I found the methylcobalamin lozenge form and take that.

     

    I live in America and there is a non-profit organization, USP, which tests the quality of a vitamin. Vitamins that pass their quality test have a USP label. I think their seal of approval exist in other countries. Apparently not vitamin supplements are created equal.

     

    From what I understand, B12 is needed by the nervous system. B12 is only found in meat, cheese, eggs or other like animal products. Strict vegetarians need to take a B12 supplement. I don’t know if I was eating enough meat, etc., or if it is age related, I’m 63. 

    • caitlin39841
      caitlin39841 steve1951

      Posted

      hi Steve. i'm wondering if u r feeling the benefits of the injections yet?

    • steve1951
      steve1951 caitlin39841

      Posted

      Caitlin, I’m completely off of B12 injections since I started taking a daily B12 lozenge. My everyday “B” complex didn’t release enough B12 in my body. The B12 “lozenges” is quick dissolving and has brought my B12 in my system back into the normal range. But then again, my deficiency was not as drastic as Vireo’s. A B12 lozenge may not bring back a normal B12 range for everyone, but in my case it did. Vireo may still need shots. My Dr.’s suggested taking a B12 lozenge and it has worked for me and I don’t need B12 shots any more. The Dr. I have now is one of first Dr.’s to ever suggest taking any sort of over the counter vit. supplement. Another Dr. has me on a prescription strength of folic acid since the med. he has subscribed drastically lowers folic acid that can’t be treated with over the counter folic acid supplements. An over the counter B12 lozenge may not be enough for Vireo or others in his situation, he still may need shots of B12. Taking a B12 lozenge was only a suggestion on my part.
    • caitlin39841
      caitlin39841 steve1951

      Posted

      hi steve. thank u for that info.. bet ur pleased to be off the jabs? good to hear the Lozenges are working for u. are u now b12 symptom free?
    • caitlin39841
      caitlin39841

      Posted

      hi guys: could anybody tell me or comment on this: if it's possible to have normal SERUM readings of b12, but the b12 is NOT getting into the cells, due to blockages or lack of transport mediums i.e. necessary micro nutrients. therefore, the serum levels are OK but not reaching the cells, so deficiency symptoms persist.

      with thanks in advance Caitlin.

    • MadgeC
      MadgeC caitlin39841

      Posted

      Hi Caitlin, when the measure your serum B12 levels it is a measurement of all forms of B12, not necessarily active B12. Thus, if you have been injected with cyanocobalamin (cyano-B12), when they measure your serum B12 it is measuring cyano-B12, it is not measuring the active forms of B12 (adenosyl and methyl B12). Similarly if you are injected with hydroxy-B12 that is what it measures. The current B12 analysis does not distinguish between active and inactive forms of vitamin B12. The next thing is that the B12 measurement does not measure whether you have the B12 on the B12 binding protein (transcobalamin II) or whether it is on haptocorin, another B12 binding protein that is not involved in uptake into cells. If you have an infection you levels of haptocorin-bound B12 can be very high, yet your cells are starving for B12 as the B12 is not on transcobalamin II. This is not well understood by the average clinician, and hardly at all by the majority of patients. Thus, if the patient is treated with B12, their serum levels go up, and then if the symptoms dont' go away, the clinician comes to the conclusion that it can't be B12, and so won't continue treating. What the clinician doesn't realize is that the B12 that they injected is the pro-vitamin and that the patient is not converting it to the active form. You then have another problem and that the inactive CN-B12 interefers with the uptake of normal Adenosyl and methyl B12, which eventually makes the situation worse.
    • caitlin39841
      caitlin39841 MadgeC

      Posted

      holy schmoley, this b12 is as complex & layered as a 'Gordian Knot'..............?? so if 50% of ppl. don't have the ability to convert Hydroxy/Cyano b 12 to an active form of b12 . in the UK we seem to get only the above. to compound this, theres' no reliable means of measuring 'active' b12, that means we're working blindly - trial & error, hit or miss science??? i'm going to have to reassess my Hydroxy alternate days 0.5 mls treatment.....oh dear it's quite a challenge??????
  • MadgeC
    MadgeC Vireo

    Posted

    Hi Vireo,

    If you are not responding to the standard cyanocobalamin B12 injections, you are not alone. There are many, many reports of this, with as much as 50% of people not responding. If you have genetic mutations in your MTRR gene, you find it very difficult to convert the inactive pro-vitamin, cyanocobalamin to the active forms, adenosyl and methyl cobalamin (B12). Have your thyroid function tested, and if you are hypothyroidic (a common cause of B12 deficiency) you need to have this fixed. In addition if you are low on vitamin B2 (riboflavin) you won't be able to convert cyanocobalamin to the active forms. FYI up to 80% of girls 16-18 in the UK were found to be riboflavin deficient. If your GP doesn't know about this, I can send you a bunch of references on the subject. Evidence now suggests that low riboflavin in the diet (ie low eggs, meat and dairy) can initself lead to hypothyrodism.

    • steve1951
      steve1951 MadgeC

      Posted

      MadgeC When I was getting B12 shots, it was in the form of cyanocobalamin in high doses. It is the most common form when buying B12 from the store. It is cheaper to make. The liver converts some of the over the counter B12 cyanocobalamin, and as you said, not all of it, into the methylcobalamin form which is more readily absorbed by the body. When you buy B12, look for the methylcobalamin form as a lozenge, it doesn’t need to be converted by the liver and results in a higher dose of B12 in the body. But that does still not guarantee everyone won’t be deficient in B12 and may need to continue with B12 shots. And as you point out MadgeC, a B12 deficiency can have many health consequences. Vegetarians especially need to take a B12 supplement as meat eggs,  and by products are the only sufficient source of B12, plants have no or very little B12. 
    • MadgeC
      MadgeC steve1951

      Posted

      Hi Steve, Not exactly sure what your point is. You are right about the old fashioned cyanocobalamin generally being used in the UK, but it is not necessarily used in some other countries. The original CN-B12 was an artefact of the column purification method used in the 1950s and despite countless papers at the time arguing about its utlility or lack there of, it has continued. B12 is incredibly important as both adenosyl and methyl B12, and the cost should not be an issue. The cost of B12 has dropped from about $100 per gm for CNCbl to now about $2.00 per gram. Mind you that is not what you pay. If you are trying to supplement with lozenges, they are OK if you are replete, but they are next to useless if you are not. Also you need both Ado and Me B12, and several studies have shown the conversion from one to the other is very inefficient.
    • caitlin39841
      caitlin39841 MadgeC

      Posted

      MdgeC. i'd love to have the reading references on b2 deficiency pls. thanks in advance. btw way my Doc has done a 'turn around' & is now willing to check my IF status & T3 / T4.

      with thanks

      Caitlin.

    • caitlin39841
      caitlin39841 MadgeC

      Posted

      p.s. MadgeC. i'm on hydroxycobalamin subcut. is hydroxycobalmin an activated form of b12 or a 'pro-vitamin?

      thanks in advance.

      C

    • MadgeC
      MadgeC caitlin39841

      Posted

      Hi Caitlin, I have put in a link in your mail box. Not allowed to have links in the open forum.
    • MadgeC
      MadgeC caitlin39841

      Posted

      Hi Caitlin, hydroxycobalamin is a "pro-vitamin". You need to have high levels of riboflavin, plus a functioning thyroid to be able to use it. The lower your riboflavin level is the less likely that you will be able to use hydroxycobalamin. Similarly the more B12 you will need, as it will not be regenerated properly over time. It is quite complex.
    • caitlin39841
      caitlin39841 MadgeC

      Posted

      hi MadgeC. thank u, thank u , thank u for that info. - much appreciated & most generous. could i confirm which form of b12 is 'activated' or isn't dependent on all the availability of all the other micto nutrients?

      thanks in advance.

      C

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