anna

Vitamin B12 Deficiency ?

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Vitamin B12 deficiency can lead to serious neurologic complications including peripheral neuropathy, bilateral cerebral dysfunction, optic neuropathy, memory loss, personality changes, impaired recall, and subacute combined degeneration of the spinal cord.1,2 Subacute combined degeneration is a rapidly progressive myelopathy that can be associated with profound neurologic deficits including progressive sensory abnormalities, ascending paresthesias, weakness, ataxia, loss of sphincter control, and gait impairment.17 In some patients with vitamin B12 deficiency, subacute combined degeneration can be triggered by brief exposure to nitrous oxide during anesthesia810 and in others after prolonged recreational use of the drug.11 Pathologically, the disease is characterized by astrogliosis, normal oligodendroglia, and normal neurons.12 Subacute combined degeneration used to be a common devastating disease but the elucidation of its etiology has led to therapeutic and prophylactic use of B12, which likely has decreased its prevalence.1315

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Symptoms of vitamin B12 deficiency can affect the gastrointestinal tract, the nervous system, and the cardiovascular system. Symptoms of vitamin B12 deficiency include:

I am sure this must have been bought up before but I could not find any links in the search, so I will ask you guys; have any of you guys been tested for this?

I ask because my mum was just diagnosed with this and it has got me thinking if this is infact what is causing my children's symptoms.

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Anna, I was reading around on B-12 deficiency in the last two days and found this interesting article:

http://www.ncbi.nlm.nih.gov/pubmed/15095047

It says that people who have a deficiency do better on TTT AFTER replacement. Something to do with vascular resistance improving.

I take B-12 injections, but at the same time found out I don't process B-12 correctly due to a genetic defect. Soooo, even though my blood levels show fine, I wonder if the actual metabolic processes that use B-12 are extremely lacking.

It is interesting that the list you listed above seems to cover alot of our issues.

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I think there is definitely something to this. Not only B12 but others as well (B1, Vitamin D, etc.).

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Yeah, found this to be an issue. Have to give a little history on this one. I have normal levels - almost high on my blood test of B-12. Yet my 23&me genetic test shows that B-12 can be a problem for me. You have to use methyl type of B-12 or you can't assimilate it into the cells properly to get the benefit. I had tried regular B-12 in the past and with research discovered that B-12 could cause a lowering of NO (nitric oxide) ---I need more NO - not less - because I need to increase vasodilation not vasoconstriction and NO will vasoconstrict. A dose of a regular B-12 made me very sick feeling. So, with working on the methylation pathway mutations ---I was scared to try B-12 again. But, got the methyl form of it and started out with just 1/2 of a pill. Hum, tolerated and felt better. No, feelings of naseau, sickness . . .gave me more energy. So, now - I'm up to one full pill a day and still doing good on it.

I have also been changing my diet due to issues with sulphur/sulphates/sulphites. Trying to eliminate most foods that are high in this and watching my herbs and everything connected to this ---CBS mutation. Added Yucca whenever I eat protein - as I have low BH4 and protein can turn into ammonia.

Okay, other new thing ---was put on GastroCrom, that's for mast cell issues and it should also help with autoimmune problems. He also changed my H1 and H2's to Allegra and Pepcid. Still using the Nasal Crom.

I know there are some others who were recently put on GastroCrom and I'd like to compare notes. Right at this minute, I feel I need to add some more allegra - but, don't really sense a need to change anything else. I've got a call into Dr. G. to see if it's okay to up the allegra to 2 a day - instead of one. So, should hear from him today.


Issie

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Wow Sue thank you for that link, I will be passing it on to our consultant. I believe my mothers GP thinks my mum has some sort of inherent problem going on and has put my mum on b12 injections 1 every other day for 2 weeks then 1 shot every 3 months or sooner for the rest of her life. My mum has suffered sudden onset of psychosis, paranoia, depression, to the point that we had started to look for care homes for her as she has gone down hill so badly, but her GP is sure this will clear to a more manageable level when my mums B12 levels are up as GP said they were very low but she does not have the anaemia at this point.

Issie

Do you think the Gastro Crom might be suppressing some autoimmune thing doing on in your guts so now you are able to properly synthesis all your vitamins?!

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I'm thinking the form of vitamins makes a difference. And, also thinking that there is definite help with autoimmune issues at play - but, the GastroCrom is supposed to keep mast cells from degranulating - so there is not so much of a release of histamine, bradykin and other chemicals that cause inflammation and unwellness. It should lower pain because it helps with lowering production of PG and other cytokines. You know there are some ideas out there that EDSIII could be associated with mast cell activation issues.

Issie

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Oh, and one of the girls that I talk to in the UK that knows so much about MCAS says that a mast cell release can also cause an increase in NE levels and that should get better with more control over the mast cell issues. So, there should be less surges that are connected to HyperPOTS response. It also should affect other chemicals that are in the gut - like serotonin response. She felt like with my symptoms I have too much serotonin and that was part of my issues. (Never asked her WHY she thought that. But, find it interesting that I could NEVER tolerate an SSRI for any length of time and would get worse on them.)

Issie

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Issie that sounds promising. Do you think that may be possible that mast cell issues in the gut reduce the bodies ability to absorb certain vitamins like some one with crohns.

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Anna, I think that is really possible. And, the more I learn about MCAS the more I think a lot of us with hard to treat POTS - especially the HyperPOTS with EDS variety - this may be our issue. (Again, just my opinion.) And, I think the methylation issue is a biggie too.

Issie

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I am CERTAINLY going to look into this! Thanks for posting this, Anna!

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Thanks for bringing this up.

I haven't been tested, yet decided to take 500 mcg sublingual b12 a day. My dr didn't consider I need to be tested or to supplement...but I've noticed an improvement in the pins and needles in my arms and legs, as well as a boost in my energy level shortly after - better than nothing.

Alex

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I wouldn't get your hopes up too much. I have had POTS and vasovagal syncope for 30 years. A few years ago, I found that I fainted much more easily and felt very tired. I gradually deteriorated over 18 months though it was only in the last 6 months that it was hard to continue with normal life. I got most of the symptoms in the first post. Then I had numbness in my feet and left arm (this is one of the last symptoms of B12 deficiency and means the levels have got unsustainably low). I had some blood tests to look for reasons for peripheral neuropathy. It turned out to be B12 deficiency.

It takes a few months to reverse the deficiency so for people trying supplementation, be patient. But to be honest, it is difficult not to intake enough B12 so the issue would normally be absorption. In people under 70 (in older people, the stomach lining thins and absorption reduces so B12 deficiency is relatively common), this is most likely due to lack of the protein in the stomach wall which is specific in allowing absorption of B12. No amount of oral supplementation will help if this is the problem. If general poor absorption is the problem, this is likely to be chronic so over time, the B12 levels keep decreasing. B12 is vital for life so it is not something you can live with long term and just put up with the symptoms.

I felt much better once the deficiency had reversed, but it did not make any difference to my POTS, though it did reduce the syncope back to normal frequency. I realise the symptoms sound very similar to POTS but to me, it felt quite different. It felt more like I was coming down with influenza, it was unrelenting and not helped by rest. Once the numbness and tingling set in, it was there all the time and it spread quickly. I had problems with fainting because I was anaemic (B12 is needed to make red blood cells). To me, POTS is what it says on the tin; worse when standing or sitting and the severity of the symptoms varies over a short period of time.

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I have been dx'ed as B12 deficient a few times. I did the shots and got my levels way up but did not experience any relief in my symptoms. I switched to an oral B12 supplement and still didn't feel any better. I did feel a bit better when I switched to a B-Complex vitamin which includes B12 and several other B vitamins. By better, it gave me some more energy and helped my appetite. I do think there are people that it's worth a try as it is a known problem that is easily remedied.

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From what I'm learning about the methylation pathways (and I'm no expert by any means - it's really complex) there can be a mutation in other pathways and you have to address those pathways before you attack the MTHFR - which has to do with B-12 and folic acid. Once those things are addressed, then your body will be able to start uptaking these other vitamins. But, since there is a mutation in how your body's enzymes work - they have to be the methyl forms of these vitamins. Taking the wrong forms of them will increase your serum levels - but, that doesn't mean that your cellular uptake will be adequate or being used properly. In fact, the "experts" say you have to eliminate all forms (from supplements) that are the wrong forms and only use the correct forms or the results won't be felt. I know with myself, when I was using the common forms and not the methyl forms ---it made no difference in how I felt. In fact, the sublingual form of B-12 made me very sick. But, the methyl form is being tolerated and I'm seeming to be doing better. I'm not attributing complete success with this - because I'm still not well. But, I am feeling SOME better.

Issie

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Good find, Anna! Thanks~

Issie

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i do the b 12 injections and sublinguals. it helps quite a bit and I do feel a lil bit more normal when i remember to take it ha ha

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I have pernicious anemia that resulted in severe B12 deficiency. My body makes antiparietal antibodies so I can't absorb it normally. I take a minimum of 5000 mcg every day (sometimes twice a day) and am able to get by without injections. My doctor tests both my levels and my MMA (methylmalonic acid); the MMA is a good test for pre-deficiency (I'd have to google why; I'm just repeating what he told me). :) I get tested every 2 months, and am usually at about 580.

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This is all very interesting I think I will have to bring the B12 issue up with my children's EDS/POTS next week.

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Someone was refering to something I wrote in regard to SSRI's and mast cells. I think this is what was being referred to.

If there is too much seratonin and NE then it would make sense not to increase it. I was thinking this was why the SSRI's never worked well for me.

Just a bump so others could see what was being talked about.

Issie

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I get B-12 shots for my deficiency but irregularly so also take pills. Thanks, issie, for mentioning the methyl form. I've heard about that. My mother also had severe deficiency and before she was treated for it, she went through a period of time where she became very confused and thought she had a sister (fabricated) who took care of everyone. Several hours after her first B-12 shot, she realized this sister didn't exist and was amazed. For her the shot was like a miracle.

It is helpful to read about all that B-12 can do. My POTS doctor is always testing me for B-6 deficiency.

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