15 year old - Loading Injections - Pernicious Anaemi...

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15 year old - Loading Injections

Dogwalker123 profile image
13 Replies

Please help! My 15 year old daughter has just started loading injections, her reading was 85. She had been suffering for months, is now very tearful, gained weight, introverted and generally feeling low and sad, it’s breaking my heart. Will these shots help with all these issues?

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Dogwalker123 profile image
Dogwalker123
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13 Replies
Seth12345 profile image
Seth12345

I don't know about how it works in young people, but in adults it can be a, long, slow difficult recovery. It's hard for someone to understand how bad it is that have been through it. With that being said the first few months are really hard and things tend to get better over time. It's not uncommon for people to act a bit "crazy" when going through the healing. It's also not uncommon for a plethora of more "new" symptoms to crop up AFTER beginning injections.

If you expect any doctors to have any understanding of this you will be surprised to find out that they really don't. This also makes things really scary.

She will get better. It will just take some time. If she is feeling worse after Injections begin DO NOT STOP them.

Also, make sure to let her rest as needed.. Make sure she doesn't have too much activity as this can exacerbate symptoms. And make sure she eats a very good, well-balanced diet with potassium rich foods. Staying up on potassium and electrolytes is really important so she can keep her strength up.

Martin_12 profile image
Martin_12

This Dutch website has some useful information on B12 deficiency in children (under 19 years):

stichtingb12tekort.nl/engli...

As far as I know it is reliable.

All the B12 numbers are in pmol/L. To convert pmol/L to ng/L multiply by 1.355.

1 pmol/L B12 = 1.3554 ng/L B12. This conversion factor is specific to B12. It can't be used to convert MMA values.

wedgewood profile image
wedgewood

Sorry to hear how unwell your daughter is. , 85 is a very low reading for B12 blood serum , given that up to 80% of that can be inactive B12 which cannot be accessed by the cells of the body .

I’m afraid that you will find that doctors have very little understanding or knowledge of B12 deficiency / pernicious Anaemia . Unless she has not been eating foods which contain B12 ( meat , fish , eggs and dairy products ) I.e. vegan or strict vegetarian diet ) it is very possible .that she has Pernicious Anaemia, for which the test ( intrinsic Factor Antibodies test ) is very unreliable ( about 50% of P.A. patients test negative ) Misusing a gas called Nitrous Oxide( laughing gas ) can also cause B12 deficiency .

P.A. can run in families . She needs to eat a folate rich diet - plenty of green leafy veg - peas etc . or take a modest folic acid tablet daily — say 400 mcg . It works with B12 .

I suggest that you read some excellent books by our Chairman Martyn Hooper ( search for his name on Amazon,co,uk and they will come up . There is also an American book called “ Can it be B12 ? “ by Sally Patchelok.

I feel for you as you must be so worried about your daughter . With correct treatment , she can make a full recovery , but if it is Pernicious Anaemia, she will need injections of B12 for life . at a regularity which prevents any symptoms from returning . This varies from person to person , even though doctors have a “one size fits all “ approach to regularity I.e every 2 or 3 months .

Best wishes .

Emmers5 profile image
Emmers5

So sorry to hear about your daughter. Glad that the problem was caught. So hard to know if the tearfulness is from the b12 or just from feeling unwell in general or just being a teen. Do watch it to see if it improves and then comes back when another injection is needed. I was told I was properly dosed for 2+ years but I didn't get over the tearfulness until I finally got the correct frequency of injections. Completely changed the quality of life. Best of luck. Also there is a wealth of knowledge and support on this site. You have come to the right place.

Nackapan profile image
Nackapan

My daughters b12 reading was that low

She also had megobalastic anaemia low folate. She had been wrongly diagnosed with fibromyalgia for years. Had been poorly/clumsy since 9.

Her initial loading doses and folate treatment really helped.

Much quicker than I've had personally. So I'm hoping with age on her side recovery although up and down will happen .

As others have said . Regular blood checks ect and routine of food and sleep ect.

I wish her well

Take care

Ps my daughter has gained alot of weight. Her thyroid under investigation . Weight has been a see saw .

Dogwalker123 profile image
Dogwalker123 in reply toNackapan

Thank you for the advice, can you take folate as a supplement or do you need to know that it’s low? Should I ask that question? Has her sleep pattern been affected i.e insomnia at all? When is it a good time to get tested for P.A? which is what they have suggested she has. Should it be when the loading injections start to wear off? Sorry lots of questions!

ClareP5 profile image
ClareP5 in reply toDogwalker123

I think PA is diagnosed through a test for Intrinisc Factor - lots of info on b12d.org....my sleep has improved massively with B12 injections - which helps overall coping with symptoms. Folate readings usually improve with B12 injections, see same website, so maybe have them checked after loading doses?

My GP is beyond useless in terms of knowledge, not following NICE or BMA guidelines, so I buy my injector kits from Medisave and B12 from Germany - Amazon. 100 B12 ampules were 58 Euros. Injector kits - 100 £14. I started on patches, but it's very expensive, feels much more stable on injections, but I noticed a lot of people are having to top up on patches between set time periods for injections:(

Singoutloud profile image
Singoutloud

It is hard seeing your kids suffer. My son is 16 and like me, has B12 deficiency (probably AB neg PA) and an under active thyroid. His mental health suffered to the point of wishing he wasn't alive. Physically he was wreck. It scared me.

So about 15 ish months ago, (after 4 years of fighting) my boy started B12 injections & 2 months later thyroid treatment.

I'll be honest, it hasn't been a quick fix, there is still a long way to go. I was worried with him starting college as he had issues with bullies at school. However, lockdown, lots of rest & continuing treatment has given him the time he needed to become more comfortable with himself. Instead of being so hard on himself, he is starting to embrace his quirky personality with much more confidence. I'm sure over time I will see more of the happy smiling boy he once was.

I am wondering as you mentioned weight gain if your daughters thyroid is playing up also. It presents very similar symptoms to B12 deficiency and it is quite common to have both conditions. It could be worth getting the doctor to do some tests. There is also a very good Thyroid forum here on health unlocked called Thyroid UK. They have been a great help with my own journey to wellness

Doctors made me feel I was a pushy paranoid mother but my advice is trust your instincts, keep fighting for her quality of life.

Dogwalker123 profile image
Dogwalker123 in reply toSingoutloud

Thank you for the advice, I shall definitely ask if her thyroid has been tested amongst all the blood tests and ask if the readings were ok for these. It’s very sad to see the children so low and down. You feel so helpless!

fbirder profile image
fbirder

Depression is a very common effect of a B12 deficiency. And many people (like me) comfort eat when depressed and can put on a lot of weight.

The injections should make a difference. You may find that they make a profound difference.

ClareP5 profile image
ClareP5

So sorry to hear about your daughter's suffering, hopefully age is on her side. I have found through the loading process, that it's important not to use up all the energy you do get and continue to rest and realise it's a long healing process. I haven't at times, so have had some really good days and really bad days! I also had reversing out syndrome which can make you feel really rubbish:( But as someone else said you have to keep going. The loading doses shouldn't stop til all her symptoms are improving. For some of us that's more than the NHS? 2 weeks.

Dogwalker123 profile image
Dogwalker123 in reply toClareP5

Thank you for your advice!

Emmers5 profile image
Emmers5 in reply toClareP5

I had not seen the term reversing out syndrome before. I totally went through that. Glad to know there is a name for it.

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