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Pernicious Anaemia Society
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Just been told B12 and Folate deficient

Hi l have just been told my B12 and Folate is low B12 150? I have had problems with what I think is my coccyx where there is pain when I sit on hard chairs and have to sit on my bum cheeks causing numb legs and severe sciatic pain down one leg. My right leg has caused problems for about a year now including my foot , my leg and foot are bigger than my left one and I have pain in my egs and feet especially after being in bed all night. I feel about 90 when I get up until I move around. I don't sleep wake up to turn over lots and don't feel I've slept. Reading posts on here I have itching legs/skin, eyes deteriorating, black floaters, always feel shattered and wake up thinking someone has knocked on door or shouted. Doctor has said all my pains should improve and my coccyx and won't send me for an xray yet. I am having a 2 week loading dose then 1 a month for 3 months then a blood test. I am told I will feel amazing by the pharmacist. Will the doc stop it when they are normal? Or will it slowly decrease again and symptoms return?

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B12 injections should be for life, though that is no guarantee that your GP won't be under the mistaken impression that all he needs to do is get the readings from your blood back into the normal range.

The body is generally very good at recycling B12 so people don't really need a lot. However, the recycling mechanism relies on the same mechanism as absorption so if you have an absorption problem you will not be able to store B12 anymore so injections will need to go on to top things up - though how frequently you need them varies from person to person.

The blood tests in future are only going to be significant if they come back low, showing that you are not retaining B12 very long.

It can take a few months for things to correct themselves and some people do feel worse before they feel better. Contrary to what your GP is telling you it is also possible, if the neurological symptoms have been progressing for a while, for some of the damage to be permanent but most of us do make a good recovery when we get the levels of B12 that we need.

Couple of years ago I had huge problems with pain, sleeping etc but these days I'm leading a normal life - even 40+ years of depression and anxiety is gone.

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Thank you it seems when I think about I have had the symptoms for about 18 months 2 years


Jonan71, my coccyx bum pain, sitting on one cheek then moving onto the other to relieve the other cheek and not being able to sit for long without hurting is also known as Tailbone pain.

Dr diagnosed me with tailbone pain as I was moving from cheek to cheek, but also said there was no cure for it, I would just have to live with it.

I also had sciatica, lower back ache, hip pain, stiffness getting up out of seats and bed in the morning and restless legs at night.

At the same time, I was diagnosed vitamin D deficient and found that the low vitamin D3 dose of 1000iu my Doctor gave me to replete my vitamin D levels odly relieved me of all my pains for a few days, but then they all came back again, a member on Health Unlocked told me 1000iu was a mere maintenance dose and to check out the www.vitamindcouncil for up to date safe doses of D3.

All was cured almost overnight with a safe dose of vitamin D3 (5000iu D3,)

If I forget to take my daily 5000iu of D3 my pains start to come back several hours later.

Note:- People with high calcium levels need to read up about taking vitamin D as it can be dangerous.


So even though the rest of my bloods came back ok it's worth trying a D3 supplement?


Best to test the VitD before supplementing as the dose could be dependant on your result.....see chart below.


The chart shows results in ng/L so yours in the UK will be nmol/L so divide your result by 2.5 - if you have one. What were the other tests you had done that were OK. Sometimes Docs say things are OK when they mean in range. However it is WHERE they are in the range that is so important.

Hypo Tailbone is also very common - have you been tested ?


I had a full blood count and just told B12 and Folate low. Asked to be referred about coccyx but doc said xray won't show anything mostly done in USA. Agreed to see what B12 injections do as I'm told they could cure my symptoms


I've had coccyx pain since having my third child nearly 4 years ago. Doctor said it's something I have to live with πŸ™ I now sit on a coccyx cushion whilst driving. I was also diagnosed as b12 deficient last year and believe there must be some sort of link between the two. I have 3 monthly b12 jabs and feel OK for the first month but then the tiredness and aching muscles come back. I also suffer from lower back pain but I don't think my vit D level was ever tested?


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