Still Having B12 Deficiency Symptoms Despite Treatment

by Mark
(Devon UK)

Hello

I am writing with regards my wife Jo she is 46 years old, as a vegetarian of 30+ years she was diagnosed with a vitamin B12 deficiency in Feb 2012 so far high intake of Jarrow sublingual 5000 mcg methylcobalamin b12 (2 x daily) has failed to improve her condition, her original blood reading last year showed a low 162, with the supplements her blood level increased to around 2000 after a few months, unfortunately this has not resulted in any positive improvements occurring in over 12 months Her Gp is not overly helpful in anyway.
This is a quick list of her current obvious symptoms, there are many more though.

Burning/painful hands feet and face.
Shooting pains in neck and back
Constant back pain
Constant joint pains
Extreme fatigue throughout whole body (struggles to stay awake throughout the day)
Lack of power in arms and legs
Heavy numb feeling throughout whole body, especially arms and legs
Unsteady on feet sometimes
Eye sight deterioration
Giving blood is almost impossible (nothing comes out no matter how long the nurse tries)
Severe tinnitus (since childhood but now far worse)
Odd perception sensation through sight (things appear more distant than they are)
Small white patches on skin around neck and head area
Thought process difficult
Always feel cold even on hot

days.
Cannot eat any meat without severe stomach upset / bloating (tried to eat meat again after 30+ years without it)
Struggle to get started in the morning (no energy even after sleeping well each night)

Jo has always tried to stay extremely healthy she still manages to weight train, exercise and go to work as normal, she only ever eats mostly whole organic produce, is a non-smoker and a non-drinker she never uses any chemical based cosmetics or household cleaners only natural based variants, Jo is still functional but things are really starting to get difficult lately

It would appear to me that the B12 in her blood is for some reason unable to do its job at a cellular level, I have been reading much on line for some time and now believe she may have other factors and not just B12 causing her issues, I frequently read about the importance of glutathione and other essential elements such as zinc, it appears her normal b12 pathways are being interfered with at some level, I was wondering if you are able to offer any advise or to carry out any tests that should determine where her problems lie and how best to treat her condition.

I would very much appreciate your response in this matter

Yours sincerely

Mark

Comments for Still Having B12 Deficiency Symptoms Despite Treatment

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Please read my site
by: Kerri Knox, Registered Nurse

Hi Mark,

You seem to be pinning your hopes on ONE single vitamin. Almost no one is deficient only in ONE thing. So please see my pages on:

Vitamin B12 Deficiency Treatment

Symptoms of Vitamin D Deficiency

Signs of Magnesium Deficiency

Gluten Sensitivity

It's almost certainly a variety of problems. Also, since she can't digest meat, she may have a Hydrochloric Acid deficiency. Please see my page on Hydrochloric Acid Deficiency Test

Hope some of this helps.

Kerri Knox, RN

B12 deficiency
by: Anonymous

Hi Kerri

We are by no means pinning our hopes on just one vitamin or compound

Over the past 18 months or so my wife has taken/ tried up to 30 different combinations of B vits folic acid other vits amino acids etc et if I listed them all you would know that we have really looked into this in great detail..
basically we have been reading and guessing as to what might be causing her issues. Unfortunately no one seems to understand how bad my wife has become, because she never complains or gives up, because of all their failed diagnostic checks the docs think it’s all in her head.

This is so far from the truth, my wife and I are both clinical psychotherapist’s’ and hypnotherapists and know exactly how the brain works! probably the reason why most in her condition would give up stay in bed and claim chronic fatigue or fibromyalgia, but my wife always the positive optimist never gives in!
A few days ago the Drs tried to take blood from her arm but as usual none came out! Instead the nurse burst a vessel that swelled up like an egg on her arm- of course she panicked whilst my wife sat there calm and relaxed, it is not in her head!

Treatment wise a visit to a neuropathic specialist revealed she has no temperature sensation in her left hand side arms and legs after her knee and elbow joints, along with general weakness, so her nerves are obviously still deteriorating.

Every one of her symptoms still points to a b 12 issue but we know she now has enough in her blood, whether it is suitable and recognised by her body is not known, other than this something somewhere is preventing her high plasma levels of B12 from being utilized by her cells, this is what we are attempting to fix.

We will leave no stone unturned, sooner or later we will start to see positive results from our on gong trials, one thing is for sure though, if we do nothing, she will not improve and only continue to deteriorate if we keep trying eventually we will figure it all out.

We are about to add in lots of pineapple ( natural but similar to stomach acid) at each meal in case her stomach acid is not that great and preventing her from taken nutrients from her stomach properly.

Kind regards

Mark

Be sure to read the pages that I recommended
by: Kerri Knox, Registered Nurse

Hi Mark,

Great info. Sorry that I 'presumed' that you were pinning your hopes on one thing when you are not. So, first of all, be sure to read the pages that I referred you to. All in all, I would suspect that she has some sort of absorption, possibly due to low HCL and possibly from gluten that may be causing that low HCL. Also, the stomach bacteria H Pylori can cause low stomach acid and contribute to malabsorption.

Be sure to read my page on B12 treatment. I would not be overly worried about the level of B12 in her blood and thinking that her body is not responding. Just take vitamin b12 until it does. Vitamin B12 levels are just not useful and should be ignored. If you think that she's B12 deficient, except for the cost, there is no downside to taking massive doses of Methylcobalamin B12 (which is better for neurologic issues). It was given in dosages of 60 MILLIGRAMS (60,000 micrograms) to neurologic patients with ALS with no downside. So again, don't get caught up on the blood levels, just ignore them.

And many of her symptoms sound much like what I mentioned, a combination of Vitamin D deficiency (weakness, pain, fatigue, unsteady on feet), magnesium deficiency (pain, tinnitis) and gluten sensitivity could be the underlying problem for much of this.

Also, I would actually NOT recommend pineapple for her stomach acid. While you're 'thinking' is correct, pineapple is too high in sugar to be beneficial for this, and blood sugar fluctuations can be a real problem for people with chronic health problems. It's better to almost completely eliminate anything high in sugar and stick to proteins and complex carbohydrates to stabilize blood sugars.

Better choices for the HCL issue are starting with a teaspoon of apple cider vinegar in water and see how she does with that. If she has no problems, you can increase the dosage to a tablespoon of apple cider vinegar in water before meals. If she does well with that, then try HCL tablets before meals. They are stronger than the ACV, but the ACV gets great results with some people and is a good way to test and see if she can tolerate the extra acid before giving her the stronger HCL tablets.

So, to recap: Take HIGH dose B12 ignoring the blood levels, test for H pylori, optimize Magnesium and vitamin d. Get her off gluten and sugar (even natural sugars), and start getting ACV to increase acid. This will give you plenty to do for a while. Hope this helps.

Kerri Knox, RN

B12 deficiency
by: Mark

Hi Kerri

Thanks for getting back with a very informative reply

My wife did increase her methylcobalamin, for many months she took various different sources, mostly Jarrow sub lingual 3x 5000 mcg daily but after a few weeks her face started to develop little red bumps and patches, and her urine turned bright pink, she now takes 2 x 5000 mcgs along with a David’s health patch every few days (no improvements ever noted)

With regard to gluten, my wife very, very rarely eats anything with gluten in it, she might eat well soaked oats maybe once or twice a month and only reports feeling a little more energised for it, no stomach issues or other signs of intolerance, I did mention gluten to her many months ago and suggested trying a spell without any gluten but she is adamant that this is not her issue due to so little eaten, pretty much everything she has eaten for the past 20 years has been whole fresh produce with this being 100% organic in the past 3 -4 years.

With regard pylori I always thought we all have it as an essential part of our internal terrain, I read that it even helps prevent throat cancers? If a test was carried out might it end up causing more confusion than doing good, I really don’t know about this one but if you think it should not show up in any tests maybe we should eliminate this once and for all.

Thinking back she did take ACV for quite a few month way back when all this started, no difference was ever noted, she will try it again soon though.

She has been taking Vit D for over a year and also gets lots of sunshine whenever possible, Unfortunately no improvements have ever been observed from Vit D (or every vitamin ever taken, all of them!)
Sugar is def not her problem , neither of us has eaten anything processed or with added sugar in it for over 20 years (ever since I read the book sugar blues) as I say her diet is based around Palio , whole organic fruit and veg, nuts ,seeds and now a little meat, obviously sugar (carbs) are found in all foods especially fruit (fructose) but this is naturally occurring and when eaten whole the fibre tends to slow digestion and prevents rapid blood sugar increases, I should mention that we have both studied diet for over 20 years as keen natural bodybuilders/now just for fitness, we have not for over 20 years consumed anything other than green tea or filtered water, no coke, fizzy drink, alcohol, fruit juice or any sweets biscuits crisps etc. etc., just whole organic produce! That’s it!

We are seriously stumped!

Many thanks

Mark

HCL
by: Anonymous

Hi Kerri

Thank you for your kind reply

You might well be on track with the HCL issue
A recent hair mineral analysis showed a few low minerals , it has been determined this is likely caused by low HCL
My wife is now following the recommendations based on the hair test, it’s still too early to know the final outcome but she can already eat more meat without the discomfort, so things are getting better
Hopefully this will all lead her more fully absorbing all nutrients from her food and for her healing to commence.
I will keep in touch

Mark

loving the replies n help
by: Anonymous

I wonder how mark's wife is doing.I am low in b12 and I dont like taking vitamins anyway but i fear dementia,Alzheimers and multiple sclerosis so i guess i gotta take some. im 28.

MTHFR and HLA or Lyme
by: Anonymous

Sounds just like Lyme disease! Even her inability to eT meat is a sign. Also, she needs to know her MTHFR status and HLA type. Her body may not be able to clear bio toxins from her body. She should get help from a functional doctor or chiropractor.

Interesting
by: Tia Mullins

Hello, I find this so interesting to read your comments in regards to your wife. I am lying here at 3:30 a.m. with increasing face tingling on my left side, involving my hand and foot sometimes as well. It feels as though I've been to the dentist and my face is waking up from the procedure. I have stomach issues as well but I am certainly not as dedicated to it as your wife. My question for you is whether she has been tested for Lymes disease. Not much luck from the standard medical route. My husband has Lymes and we have found a Naturopath that has been extremely helpful. Just a thought. Thank You for your time. Tia Mullins

Levofloxacin
by: Faye

Hi Mark, so sorry your wife is having so many problems. Has she taken any fluoroquinolones in the past. I have a lot of her problems and mine were caused by taking Levofloxacin.

It causes toxicity in many people and side effects can appear months and months down the road after taking it. Many never recover from its affects and can never function again as they were before taking one of those drugs.

I took it in late March and didn't develop neuropathy until mid June, but many of my problems started shortly after finishing the drug. You should check out this possibility.

cobalt issues with B12
by: Anonymous

Look into cobalt poisoning/sensitivity. The synthetic B12 is cynocobalamine.
When I took it for a short while I noticed getting shooting pains in my legs, blurry vision and then palpitations.

Iron?
by: Anonymous

You didn't mention her iron levels. Her symptoms sound like mine. Consistently doctors told me my iron levels were in normal range, but failed to check ferritin. Eventually I was tested for the right thing and my ferritin was 2. Normal range is between 30 and 300 I think. I felt like I was going to die.
I recently had intravenous iron while still taking b12 sublingual and folinic acid and avoiding products with folate additives ( which is just about everything made of wheat).. I feel like a normal person again.
I hope this helps, it's no fun being so sick!
X

Something Else Possible
by: Faye Murphy

You might want to see if she has ever taken a drug in the fluoroquinolone family of antibiotics. I have most of these same symptoms as well as some others due to taking Levofloxacin for an infection. It caused my B12 to get low and I developed peripheral neuropathy months after taking it and have now started having muscle spasms in my upper arms and legs. I took the drug last March.

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