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B12 deficiency

crushing profile image
16 Replies

New here as of today.

I started 1000 mcg injections a week ago. I’ve had 5 injections so far but have felt worse than before injections. B12 levels were at 250 before injections and have been this same level for years. I have pretty much all symptoms of low b12 and have for years without knowing that my level is low since the US goes by a range of 200-950. UK goes by 500-950. The US range is disappointing. I plan on finishing last 2 doses this week but decided to take a few days off due to feeling awful. I expected an immediate improvement but after reading posts, it seems it will take a bit before alleviation of symptoms. I also plan to get folate and vitamin d checked next.

How long did it take you guys to feel positive improvements to symptoms? So far my symptoms have worsened since injections and have been having stomach issues as well.

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crushing
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16 Replies
Nackapan profile image
Nackapan

I got worse before better on the first 6 loading In jections. I had neurological symptoms. I saw improvements when every other day were reinstated 5 weeks later so by injection ? 14.

It's a roller coaster.

Improvements do happen. I'm in the UK so have hydrox b12.

When my b12 was tested the range was 200-900 pg/ml

Keep a diary.

List your symptoms

Rule out anything else

Yes good idea to get folate vitamin d and iron and ferritin tested.

I was told I'd be skipping down the road by Gp when loading finished !! I couldnt walk let alone skip

Hang in there

Have you got PA? Or been tested

Does your doctor know about b12?

crushing profile image
crushing

Thanks for reply.

My GP also thought I’d feel better almost instantly. Don’t think she knows much about b12.

Also have Hashimoto’s thyroiditis

Some notes on symptoms below.

Symptoms

Cold all the time

Nausea

Dizziness

Constipation

Hemorrhoids and itching in and around anus

Fatigue

No endurance

Sleepy

Heart palpitations especially after eating

HBP

Blurriness

Eye problems mostly with right eye

Droopy feeling eyes

Brain fog

Anxiousness

Depression

No desire to do anything

Headache

Joint pain mostly in shoulders

Disc pain and issues

Soreness in back

Toe nail fungus in right big toe for years

Numbness in outer calf and knees

Twitching in temple and eyelids

Low libido

Tiredness after full night sleep

LynneG profile image
LynneG in reply tocrushing

Have you thought of looking into ways of supporting your mitochondria. Heart, brain, liver are organs that use massive amounts of energy and so the cells in these organs have thousands of mitochondria in each cell. Other cells in the body have a few hundred less :) Mitochondria produce ATP the energy for the cell so that it can function.

We need to keep the numbers of out mitochondria up and we need to keep them healthy or we just won't be healthy

Simply said science has recently discovered also that mitochondria do not only make our energy (which they do from the nutrients you provide in your diet and light) But also they are sensitive to perceiving threat/danger from their environment which is your body at a cellular level. From chemicals, lack of nutrients so deficiencies like B12, stress, heavy metals, infection, negative thoughts, etc

When they detect all is safe, they produce ATP

When they feel threat, they switch off energy production and switch into defence mode enabling resources to focus on defence pathways until all is well again. The cell/body has only so many resources, so prority is key. This is known as the Cell Danger Response.

Theoretically the problem is that the mitochondria can get stuck in cell danger response and therefore aren't in energy producing mode. (even if the threat has been eradicated and well gone)

Symptoms would be any of the fatigue syndromes. And basically anything, because when the cell is not working optimally because it has little energy to function well then nothing works as it should. This includes immune function, nervous system signalling, mitochondria to microbiome organism messaging and gene signalling /epigenetics as well.

Should your immune system really be allowing long standing fungal infection.

Our mitochondria numbers naturally decline with age, and when there are too few, our cells don't have the energy to work and we die.

But we can support and increase their reproduction/ numbers and develop strong rather than live with weak mitochondria.

Key is: pay attention to circadian rhythms, sleep, nutrition, exercise /movement (not exhausting the system) intermittent fasting, being mindful of our thoughts/feeling safe

See Ari Whitten's website The Energy Blueprint. You can look into his book on Amazon about Red light and Near infrared light (to increase numbers of and create healthy mitochondria and healing)

Google Nicki Gratrix The Cell Danger Response and our Vagus Nerve Stimulation

Google Datis Karrazian and Vagus Nerve Simulation - crucial for nervous system messaging to prevent constipation. The Vagus Nerve running from the brain stem to the organs and body controls motility

Look up neurologist and researcher Dr Norman Doidge and his work with patients with Parkinsons, Fatigue Syndromes. Curing in a few weeks with Vagus Nerve Stimulation which stimulates mitochondria out of Dorsal mode (defence mode) into energy producing mode, using a tongue stimulator - early trials. But companies are already making electronic Tongue stimulating devices - not recommended at this early stage.

I am just listing the above incase you haven't heard of the link with mitochondria and our health to avoid criticism of WooWoo

We are all one body, everything impacts on everything else. We need to take a step backwards and back further to find the ultimate cause x

fbirder profile image
fbirder

No.

No country in the whole world uses 500-950 as their ‘normal’ range. If they did then they would have to treat more than 95% of the population.

Here in the UK we are told that is the normal range in Japan. It isn’t.

crushing profile image
crushing

After looking a little more looks like the articles are using pmol/l and pg/ml interchangeably which is incorrect. Meaning japans range would be more like 135pg/ml on the lower range.

fbirder profile image
fbirder in reply tocrushing

Different units don’t make that much difference. Only about one-third higher or lower.

No country has a standard ‘normal’ range. Each lab will have their own range.

But all countries do have similar ranges.

crushing profile image
crushing

Thanks fbirder for the info. Regardless, I will try to get b12 numbers up as my symptoms most closely align with b12 deficiency.

fbirder profile image
fbirder in reply tocrushing

Yup. It sounds like a B12 deficiency could account for some of your symptoms and the best way to find out is to try a course of injections.

But many of your symptoms do not fit with a B12 deficiency. So it’s best to keep an open mind about alternative possibilities.

Sleepybunny profile image
Sleepybunny

Hi,

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

I wrote a very detailed reply with links to other B12 books, B12 websites, other B12 info.

I'm in UK so some of the info may be UK specific but hopefully still of interest.

healthunlocked.com/pasoc/po...

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies.

I am not medically trained.

jarlethblue profile image
jarlethblue

it is fairly common to feel worse before you feel better. I did but it improved with more injections. It took me many many months of daily injections but i have had Lyme disease in the past and i think this is why it took me so long to improve. Stick with it. it is not uncommon to experience new symptoms as the body floods with B12 so do not panic if this happens. Also keep an eye on your potassium levels as it can be used us as the body uptakes the B12. the best of love and luck on your journey to healing. x

Imogenta profile image
Imogenta

My impression from reading many people stories is that it can definitely get worse before getting better and that it can take some time off regular injection before healing accumulates sufficiently - it seems to vary a lot between people. The reason seems to be that the B12 starts to stimulate nerve growth and processes in the body that have been deteriorating. Make sure you are eating well, resting, taking folic acid and b vitamins generally (altho limit B6).

Your body is building new blood cells in the first few months so needs iron - gentle form of iron supplementation is Spatone.

Good luck!

nagarch profile image
nagarch in reply toImogenta

I am curious why you suggest limiting vitamin B 6

Imogenta profile image
Imogenta in reply tonagarch

B6 excess can cause problems similar to B12d. I’m not sure of details but it is consistently advised to not have too much. I’ve read a paper on it but don’t have the link handy. Most B12 forums have this research.

nagarch profile image
nagarch in reply toImogenta

Thanks Imogenta. I’ve been taking 100 mg of time to release vitamin B6 every other day which doesn’t seem like too much but I’ll cut it down if it’s going to work against my B12 therapy!

I want to suggest another really great iron supplement which is Douglas Laboratories ‘Feronyl’. It’s very well absorbed and easy on your gut.

Imogenta profile image
Imogenta in reply tonagarch

I’ve been told no more than 10 mcg of B6 a day - and also take breaks from it. But you should prob check

Thanks for the iron tip 👍

helvella profile image
helvella in reply toImogenta

I suggest this paper:

The vitamin B6 paradox: Supplementation with high concentrations of pyridoxine leads to decreased vitamin B6 function.

ncbi.nlm.nih.gov/pubmed/287...

nagarch

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