Pernicious Anaemia Society
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Daughter diagnosed with b12 deficiency result was 109

Hi my daughter has just been diagnosed with b12 deficiency .I took her to doctors because out of nowhere she was having panic attacks and psychosis .she got diagnosed with b12 had loading doses and folic acid and vitamin d it’s been 2 weeks now and she is still getting all symptoms keeps saying she doesn’t feel like she is here and very confused .i also have b12 deficiency ,.i am so worried about her I don’t know what to do .we went to doctors they said it has nothing to do with the b12 she is having panic disorder and gave her citalopram which isn’t working .my daughter keeps saying she doesn’t want to be here anymore and is so scared I’m very afraid for her asi too had pysychois with mine .she is not at all like this normally very chilled and clever girl so out of the ordinary she is 20 yrs old and at uni but home with me for holidays at the moment .please help because I fear for her life and my doctors don’t seem to care.

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Ditto. We found out our daughter (similar age) had B12 deficiency through a private blood test. The NHS wanted to diagnose mental health conditions. Something did not seem right to me so we got a private blood test. The Doctors laughed at us. Her B12 came back 127 with very low folate and vitamin D. Long story short, they would not accept the private tests so we took matters into our own hands and she now has 1mg hydroxy cobalamin every day.

She has started to show improvement after 3 weeks but still a long way to go. We find she is having good periods then crashes for 24 hrs (like at the moment she is in bed)I am wondering if changing from Vitamin D tablets to a spray has had a positive effect.

We are going to keep on with the loading doses until she stops improving.

My heart goes out to you, as it is heartbreaking to see your child suffer. But there is hope. She will get worse before she gets better as the B12 repairs the body and brain. From reading up on this, it seems the treatment does not produce a eureka moment but a slow gradual improvement.

If she has had psychosis she maybe needs loading injections every other day until improvement as the guidelines say. Someone more intelligent than me can advise you on that on here.

My advice is keep reading and asking questions on here. You will need to be an expert on the disease to navigate our health care system.

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Hi they wont give her anymore injections after her six loading doses she has to wait 3 months for hers .she has lost a lot of weight too but i did before i got diagnosed.yes it is horrible seeing your daughter go through this .i wish you and your daughter good luck i will let you know when she improves .

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It would be good if your daughter could grasp and understand that her symptoms are due to the B12 deficiency and not because there is "something wrong with her" mentally.

I wish I had known that the causes of my depressions/anxiety/bad moods and anger issues were down to my P.A. - which is a b12 deficiency. I think I would have behaved much differently to my friends and family.

I "lived" with P.A. for nearly 40 years before I joined the PASoc and found out what it was all about.

You probably know that it is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.

Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years.

I wish you and your daughter well

.

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Thankyou clive i keep telling her that but she is so confused at the moment i am very worried about her as im worried she will take her own life because of the things she is saying to me .doctors will not give her anymore till her 3 monthly injection .i feel like im stuck and dont know what else to say to her to calm her down.

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It is also important that both your and your daughter's Folate level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

Have you thought of giving her over the counter B12 and B9 (Folate) supplements if her doctor won't increase the frequency of injections?

Personally I find a daily Methylcobamalin B12 spray helpful together with a Folic Acid 400μg tablet.

Please remember I'm not medically trained but do know what your daughter is "going through" as I too contemplated suicide.

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We had the “I wish I was dead” talk. I promised my daughter that I would make her better and it was only temporary. At the time I had no idea how. That made it even worse when the GP was no help.

Now she is the happiest I have ever seen her and no anxiety. The only problem is her tiredness which is not all the time, but tell her it means theB12 is working

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Thankyou so much .

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Kyanah - are you in the UK?

You could try asking for a referral to a pshychiatrist in the hope that you hit one that is aware of B12.

You could also try contacting the PAS directly - though you may need to join to get support.

pernicious-anaemia-society....

pernicious-anaemia-society....

In terms of your daughters mood you could suggest that she reads this post

healthunlocked.com/couchtob...

and take a look at my profile and my story. A lot of us on here have been in that dark pit she is inhabiting at the moment ... and a lot of us have come through the other side

healthunlocked.com/user/gam...

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As others have mentioned, keep working to get her the shots and treatment through the system, but in the meantime there are other ways to try to get her some b12. There are tablets you put under your tongue, sprays you spray under your tongue, creams that you rub on your skin or in your nostrils, and patches. Some people even order their own b12 liquid and inject it themselves. I haven’t looked into the self injection path but I am looking at all of the others to see what works.

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Hi,

So sorry to read about what your daughter is going through. I don't have time to write much now but suggest you look at some of my recent posts especially if you're in UK. Just put Sleepybunny in search box.

UK B12 documents

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

bnf.nice.org.uk/drug/hydrox...

NICE CKS

cks.nice.org.uk/anaemia-b12...

B12 books I found useful

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.

"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.

PAS (Pernicious Anaemia Society)

Based in Wales, UK., Has members from around world.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

B12 and mental health

b12deficiency.info/b12-and-...

martynhooper.com/2017/01/22...

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

Unhappy with Treatment (UK info)

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment.

hdapatientcaretrust.com/

I am not medically trained.

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When you mentioned losing weight and the panic I immediately thought of thyroid levels as well as the b12 deficiency . Please her her checked for this also and try very hard to get her more frequent injections . She also MUST be started on folic acid for her low folate . A lot of these conditions have overlapping symptoms . Wishing you both well x

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