My 14 year old daughter has been mainly in bed sleeping for 7 to 8 weeks. She sleeps most of the time and is complaining of aches throughout her body. I have pernicious anaemia and it runs in my family. The doctor says her levels are in normal range and she hasn't got pernicious anaemia. I am extremely concerned about her health.
Pernicious anaemia : My 14 year old... - Pernicious Anaemi...
Pernicious anaemia
Written by
TracyEsmond
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43 Replies
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Hi,
I can appreciate your concern.
The print out of results is very dificult to read, could you repost ?
please like Jillymo said repost results, unreadable. B12 looks like 174 ?which could very low ???
Because of family history yhd G.p shpukd consider PA .Or functional b12 deficiency
IFAB test should be done with s host of other bloods.
Hopefully the G.p is working with her eliminating things.
Exhaustion and body aches can be caused by so many things.
Your G.p has her history .
If you are not satisfied see another g.p for a second opinion
I had years of wading through services with one of my daughters ..
It's very difficult .
Keep a diary . .get your daughter to do one too
5 worst symptoms .
Diet .
Mental health ect
I have requested to see another doctor. The most I've got so far is a referral to paediatrics, but surely the referral should be to haematology?
Not necessarily heamatology .Hope the wait for Paediatric department not too long a wait. ⁰
Also the second G.p helps her.
I'm really going to fight for her health
My daughters results
I understand your issues with the Doctors, I feel that he is probably making a stand against you on principal because after all, he is the Doctor and you are not, so he feels he cannot give in after making a decision! He is wrong in this instance, and you are right, and I also understand your wish to persue this for your child; any responsible perent would.
Have you considered purchasing B12 yourself for home administration? If you do then monitor the condition prior to doing so, then during your administration, then let that pompous Doctor know your results. I believe this should prove how wrong he is, and also could save your child because the longer this is left, the worse it will get, I know because this happened to me and I ended up with a near stroke where my body shut down and I lost my motor skills. It took weeks to diagnose me so I was left with some brain damage, including memory loss and direction issues.
Let me know, and GOOD LUCK
Akidma
The doctor has already warned me that if I administer b12 injections to an under 18 year old I will be reported for abuse and could even go to prison. I asked him to start loading doses for 3 months to register the difference to gain proof that she needs them. I reminded him they are water based and none toxic so it would cause no harm but prove a point. He refused and got quite offensive.
Just to note that being water-soluble is not a guarantee of non-toxicity. B6 is water-soluble but can cause neuropathy at high doses.
There is however, no evidence of B12 toxicity at any dose so I don't know how they could report "abuse" for administration of a substance which has no proven toxicity at any dose.
It sounds like he is trying to scare or intimidate you.
Thank you. If her health gets any worse I am going to have to make the decision based on risks. I have started to make a diary of how she is. If I do end up putting her health first and injecting her, I will log the progress. Hopefully that will prove I have made the right decision. I'm all my girls have and I will always fight with everything I've got for them.
IMO the main risk with starting independent treatment is that, once begun, it becomes increasingly difficult or impossible to get a B12 deficiency diagnosis confirmed or PA testing/diagnosis. Most medical professionals will take one look at the elevated B12 that happens after treatment and laugh at the idea of testing for PA with IFAB tests etc.
You might get an enlightened one that does not but that would be very rare. Even if IFAB tests happen, a positive result (indicating PA) might be dismissed due to alleged interference from the B12 injections. Typically you're faced with a choice of discontinuing the B12 injections for some time to try and get a valid IFAB, while tolerating a decline in health, or continuing injections in order to prevent deterioration of health. It can be a bit of "stuck between a rock and a hard place".
So before commencing independent treatment I would consider how important a PA diagnosis from the health services is to you, because it will become much more difficult to get one after independent treatment starts. I'm not advocating one or the other as each has trade-offs but wanted to make you aware before you take that next step.
Also I'm not a legal expert so although I can say with confidence that B12 has no proven toxicity at any dose, I'm not sure what kind of legal mechanisms they could bring against you or how easily they could be fought so I have to defer to others on those.
Tracy
Your Doctor is a problem that's a fact! You can still dispute his judgement without harming your reputation and standing at the surgery. Please refer to the following web site:-
easylivingfl.com/care-manag....
Regards
hello TracyEsmond, thank you for reposting results.
I find it incredible that gps only see the 'normal' and ignore all the B12 comments about possible deficiency. About the negative bias.
Given the family history of p.a. , symptoms and B12 result its likely she is B12 deficient. gps and consultants should consider symptoms first but rarely do.
As Nackapan says make a list of symptoms, that further tests should be done.
If your daughter has neurological symptoms she needs treatment now to avoid permanent damage.
Ask your new gp for injection loading doses, an improvement should prove her b12 deficiency. Oral treatment is unlikely to work if she had P A.
Look at PAS symptoms list. NICE recommendations re. P.A. B12d.
I told the doctor all of that and explained that she needs loading doses straight away. He told me he can't just give b12 shots to anybody. I told him if he's a real doctor he can as there's more than enough reason. I've been on the phone for two days wanting an appointment with another doctor and still waiting for a call back. The problem is most of the doctors in my area are linked to the same organisation.
Yes they are in groups but at least more Gps in it .Appointments are difficult to get .
Triaging now .
Online .
I've been trying for a month now.
Finally have one for3 weeks time.
There should be 'urgent 'appointments available for your daughter .
Mine needed but not urgent.
hello, yes I know it's very difficult getting any appointment but you are legally entitled to face to face appointment with a doctor.
One option would be to speak to the Office Manager, ask why not given urgent appointment. Complain in writing if necessary . Consider changing surgery.
You could check what policy the Health Board dictates to gps re. giving B12.
You need more tests. At least a Full Blood Test. IFAB test. Would recommend a full Iron Panel as b12d state uses more iron.
If you can do a private Active B12 test , this will show real state of B12 at cellular level used by the body. I use Medichecks. Blue Horizon, many too.
You could decide to give her B12 injections (and co-factor folic acid, vitamin D) but this will give high B12 Serum Blood test results, the advice is to stop injections for at least three weeks before any blood test.
All best wishes to you both, x
All good but go for total B12. Last time I checked NHS did not accept 'active' B12, just total.
As for changing doctors, I've run out of choices in my area. Oral B12 high doses at least until after blood tests. Injection now would make blood tests meaningless.
Hi, oral B12 in high doses or not can skew the blood results just as easily as injections. Blood tests and metabolic tests really need to be done before any form of supplementation. Part of the reason that so many struggle to get a diagnosis is due to taking a small dose in a multivitamin which puts them in range and doctors thinking that B12 in blood equals B12 in cells, which of course it does not. Best wishes
Of course it will. The purpose is to discover if it's an absorption problem. If blood B12 is high injections are not needed, just attention to diet or investigation of metabolic problems.
But many do not get referred for metabolic investigation or the problem is not able to be pinned down, and injections are very much still needed even if serum is high.
But not if there is no absorption problem.
I'm sorry, I don't follow what you are saying.
It's hard enough for those of us who do have absorption problems to get the right tests and treatments. I don't know any doctor or consultant anywhere, NHS or private, who will even listen to you unless you have other problems too, if you do not have an absorption issue. If your B12 is high without injections you do not have an absorption problem. You may have other issues, but without symptoms you won't get investigated.
I'm still not sure that I follow. B12 in serum could be high (ignoring other serious illness causes) due to functional/cellular deficiency, or could be high following oral/sublingual supplementation which many take - often suggested that people maintain a high normal level with other autoimmunity, such as thyroid or Sjogren's - having perhaps had a test and been deemed acceptable although low in range.
Surely if you are not experiencing symptoms you would not be supplementing or seeking help, although I appreciate that with multiple conditions causing very similar symptoms then isolating which symptoms relate to which condition is nigh impossible. The range of symptoms for B12D is vast. And we know that some of those with PA use oral with benefit, at least for a while, as ability to absorb will decrease with progression of condition as well as with age. Which means that some will have high serum but will need to change from oral to injection or alter balance of those to maintain health.
Many never get a PA diagnosis, just a B12D, 6 loading doses and 3 monthly if you are lucky, or prescribed a short course of oral, or told to go away and so self-treat orally, all of which will probably lead to deterioration (unless truly a dietary deficiency) but they may well still have high or in-range serum at the point that they end up back with another GP. I, fortunately, have both an NHS GP and a consultant who understand that high serum does not mean adequate cellular B12 (although it took years to get to this point). A good 25% of those who benefit from B12 injections have normal serum and MMA and homocysteine.
Cheers
The new NICE guidelines state the levels of an Active B12 test so I believe they would consider it.
Possibly, but I had some blood tests done a month ago and the B12 was only listed as total.
Hi, just a comment that active B12 test, while it may be useful and show deficiency, only shows what can be taken up by cells, not what is being taken up by cells, and it cannot show how the Bs are working within the cell. There are no tests to rule out a deficiency. Cheers
bookish,t hank you for that information, slightly disappointing. Tests are not perfect I know. The Active B12 test as its commonly known is a test I can easily do myself without the prolonged saga involving gp.. The NHS say its more accurate and most still use cheaper serum test.
Hi, I'm sorry. Do you still need to test, as you are self-injecting? I'd be guided by symptoms. You could do an at home homocysteine but even that may have already corrected with the treatment (and doesn't always rise, just like MMA doesn't always). Best wishes
My daughter isn't on any treatment. I've deliberately kept her free from all vitamin medicines as I know she needs the correct diagnosis. She eats a healthy diet normally. At the moment she has missed 7 or 8 weeks of school. She sleeps all of the time only getting up for food and drnk, although I have to wake her to encourage her to push fluids. I'm having to take time off work to care for her. All of the worry has bought on stress and anxiety in myself. I'm divorced and have no family support. Meanwhile my fun, lively daughter is a ghost of the girl she was. As I have pernicious anaemia I can understand what she's going through. I was always ill as a child, I had constant migraines and passed out often. By the time I was a teenager I would loose focus and drift off into daydreams. I wasn't diagnosed until I was 28 when my health was in a very poor state. I really don't want my daughter to have the life I had. 3 monthly injections did nothing for me, by 46 I was on a mobility scooter outside the house and walking sticks inside. Finally I gave up and self inject once a day. I now have a normal life apart from the odd low day. I am seeing so many similarities in my daughter that I had at her age.
I am so sorry for you both but glad that you recognise what is going on and are able to advocate for her, as well as treat yourself. B12 metabolism is strongly genetic, my own family has 6 known consecutive generations with PA or B12D. Might also be worth looking at full thyroid testing if it can be arranged, the two being so interlinked. You are doing the right thing. Best wishes.
Hi Tracy,
I have read the varying opinions here, and I am not a doctor but before I read the thread and just your post, I thought you should just start "at home" injections. I do understand that they can get expensive but this last bit you wrote about how much your quality of life improved after you started self-injecting every day speaks volumes.
I hate it that that doctor intimidated you like that. In order to protect yourself, (from something I don't believe would ever happen...but nevertheless) I would try to document where, when and how you tried to get help before you took matters into your own hands. Dates, providers, diagnoses (or lack of) and most importantly symptoms of your daughter and maybe even your own journey with PA.
I do understand that if you start injections at home you will mess up the chances of getting a proper PA diagnosis. I never got a PA diagnosis, but I did get an MMA and homecysteine test, and based on those, I took matters into my own hands and started self-injecting and my MMA, once 4 times the high end of the range, normalized in a couple months. My homocycsteine went way down as well. I clearly have an absorption problem though it did not show up without my own self-trial of injections and blood work. I was fortunate to find a doctor to write me the orders for these tests. These tests are easier to get in the US but B12 literate doctors are not.
I hope you can afford to consider this. What harm can it do? We all know that we excrete what we don't need? Yes, it will mess up B12 tests administered for a while, but your daughter is really, really sick. I am not dismissing any of the "what ifs" above, but I am encouraging you to give it a try. That is what I would do. I would also never go back to that doctor who scared you like he did.
Again, I empathize with all the "what ifs" and your dilemna, but your daughter can't get out of bed and this is one thing you can try. BTW, my serum B12 was sky high at one time and it turned out that I had not been absorbing it. Eventually, after the doctors ignoring my sky high B12 but related deficiency symptoms, my B12 dropped down below 100. I then took matters into my own hands.
Best wishes to you and your daughter, Tracy.
Hi Tracey,
Sorry for short reply - I have an arm issue that limits typing.
Have you considered joining PAS (Pernicious Anaemia Society)?
Parents can join on behalf of children. you do not need a PA diagnosis to join.
pernicious-anaemia-society....
PAS membership is separate to membership of this forum.
There is a helpline for PAS members.
pernicious-anaemia-society....
Lots of useful PAS leaflets including ones on juvenile PA.
pernicious-anaemia-society....
B12info.com website has lots of useful info.
Children are mentioned.
It's run by a UK campaigner on B12 deficiency.
There have been recent threads by people in same situation as you. I'll try to find some when I have time.
This thread may have upsetting details.
healthunlocked.com/pasoc/po...
Search forum posts with terms such as "parents/son/ daughter/children" to find other similar threads.
I'd really suggest getting support from PAS. Sometimes parents of children with B12 deficiency are not listened to.
There have been cases of parents being diagnosed with a serious mental health condition because they treated their child without agreement of doctors.
Has she been tested for PA and Coeliac disease?
I'm not a health professional.
I am a member of pernicious anaemia society.
seemssimilar to m.e.
Good point mozlaw,
B12 deficiency is sometimes misdiagnosed as ME/CFS.
Article about misdiagnosis of B12 deficiency as other conditions
And even if it is ME, B12 can make a big difference ncbi.nlm.nih.gov/pmc/articl...
As far as I know there are no national guidelines for treatment of B12 deficiency in children.
These documents might be relevant.
From BNFC (British National Formulary for Children)
bnfc.nice.org.uk/drugs/hydr...
bnf.nice.org.uk/treatment-s...
Might be worth submitting a FOI (Freedom of Information) request to your ICB (Integrated Care Board) in England or Health Board in Wales/Scotland asking which B12 deficiency guidelines ICB uses for children with B12 deficiency and for a link to or copy of them.
Thread about Patient Safety, has links for people having difficult experiences with B12 deficiency.
healthunlocked.com/pasoc/po...
The links are aimed at adults so may not be applicable to children.
My friend's child is coeliac. Before it was diagnosed, she got to such a point with the GP, who decided my friend had fussy mother mental health issues, she ended up just taking her emaciated puking child to the pediatric ward of the local hospital and refused to leave. This was about 15 years ago. So that's one option!
Go for a second opinion good luck which ever way you choose to go. X
Slater and Gordon may be able to help - slatergordon.co.uk/newsroom...
They've helped several people whose drs failed to apply the correct guidelines. The website summarises the stories but you can also call them. Can't hurt?
Oneash mentioned coeliac disease.
Coeliac UK article about diagnosis of coeliac disease in children.
coeliac.org.uk/is-it-coelia...
Coeliac UK have a good helpline.
coeliac.org.uk/glossary/hel...
NICE guideline Coeliac disease (applies to children)
NICE guideline B12 deficiency (for over 16s) published March 2024
NICE CKS Anaemia - B12 and Folate deficiency
cks.nice.org.uk/topics/anae...
BSH Cobalamin and Folate guideline (for adults) published 2014
b-s-h.org.uk/guidelines/gui...
Have you talked to PAS?
B12info.com page about Children and B12 deficiency
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