Our GP said if symptoms got worse then take to A&E and i’m seriously considering it. My daughter is so utterly exhausted she has nothing left to give and doesn’t know how to get through each day. Has anyone else resorted to this and found them any help?
Her vit D deficiency is being treated and i’m giving her 1,000mcg B12 plus she’s eating cheese, meat, poultry and dairy and yet her energy levels are rock bottom and getting no better. She said school assignments are taking her so long to complete as she has to concentrate so hard not just on the subject but the physical side as she’s so weak she moves slowly. School are being supportive but they are encouraging her to be in most of the day and saying she can go home last period if she’s not coping, she wants to curl up and cry as she can’t do anything she enjoys anymore.
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ATS1304
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If she has Pernicious Anaemia then B12 by mouth is going to be ineffective, and she will need injections of it. She should discuss this with her doctor, with you present if she desires, with a view to blood tests for this, and treatment to commence if the diagnosis is confirmed (low B12, and possibly IFab, though IFabneg does not rule out PA).
Note though, that a lot of us find that the recommended frequency of injections once the loading doses are complete (once every two or three months) is insufficient, and we supplement or replace the NHS jabs with self-injection.
But one step at a time; look to the NHS for a diagnosis of PA, and the initial treatment, and come back later for more advice if that treatment provides improvement, but she then does not do so well on the 2-3 month jabs.
She has a vit d deficiency and “borderline” b12, vit d treated but told b12 just treat with diet. Her folate and ferritin are within normal range but both at the low end. She has a list of symptoms and the exhaustion is crippling and she just can’t keep going like this. She has been referred to paediatrics but we don’t know when that appt will be and school want her in and her words are she feels like her body is shutting down and she’s dying. GP advised A&E if symptoms worsened as he has no idea.
Is she at all anorexic? Bulimic? Can you share here age with us?
Only diet-related B12 deficiency can be treated via diet changes, and anyone eating adequate amounts of the foods you quote and still exhibiting symptoms of PA, which what you describe could very well be (though other causes are always possible), will require injections.
(Please note, by the way, that I have no medical qualifications. Any observations I make are based on the published NHS guidelines on the diagnosis and treatment of PA, mediated by practical experience of caring for someone with PA, and the steps we take where we find the NHS advice insufficient, which I describe for the benefit of others without claiming that it constitutes a recommendation, or even advice).
She’s 14 (15 in a couple weeks), she has so many symptoms and we are baffled as is her GP but every symptom she has is listed under b12 deficiency that giving her levels are “borderline” I suspect this might be the cause. My niece on my sisters side is undergoing b12 injections and will have them for life, my other niece on my husbands side has suffered anaemia and also has a vit d deficiency, she has had years of unknown illnesses.
She has a healthy appetite, in fact it’s the only symptom that is opposite to b12 as her appetite has increased and she has gained a few pounds. Before that she ate very little but not due to an eating disorder but just that she never really got hungry.
I’ve kept a list of symptoms as she complains of them when they last more than a couple weeks.
Extreme fatigue (Needing to sleep a lot more even feeling need to sleep the during day)
Weakness in arms and legs
Knees buckling
Losing balance
Ringing in ears
Trouble concentrating
Feeling faint
Headaches
Pain behind the eyes
Stomach cramps
Nausea
Painful bloating
Wind
Diarrhoea
Burning legs
Feeling numb mood wise / no longer enjoying things
Irritable
Mood swings
Vision disturbances - seeing black spots / blurred
Very sorry to hear and it’s highly likely there is a bundle of issues not just B12 deficiency but my first question is was she checked for diabetes? Do you know her inflammation markers? I would also check toxicity (heavy metals) and for celiac,
Yes she was checked for diabetes and all fine. Her blood test showed that she is completely IgA deficient which states can be associated with coeliac disease so could be an underlying condition.
Ok, got it! Is she on gluten free diet? Is her liver ok? Does she have a leaky gut? I would try to give her as much green smoothies as she wants and you can try to give her high dosage of Q10 for 3-5 days to see if it makes her less tired.
If you are referring to inability to diagnose it, it’s not quite correct. Cyrene Lab offers leaky gut (intestinal mucosal hyperpermeability) test. However, if you are referring to getting an official diagnosis, then it’s true. Traditional doctors avoid it and It’s not clinically recognised as disease.
ATS1304 The Mayo Clinic suggests that Q10 should be given under the supervision of a doctor. I think this is particularly important since an unwell child is concerned. Here's a link to information provided by the mayo clinic:
Please note that some of the side effects are similar to your daughters symptoms so if these get worse, the Q10 may be the culprit. Also worth noting that Q10 shouldn’t be taken by anybody on blood thinning drugs (not suggesting your daughter is, just useful for others to know).
About a gluten free diet - please don’t try this until your daughter has been appropriately tested for coeliac disease - gluten needs to be eaten for six weeks prior to testing or the tests will not work (there needs to be gluten in the system to detect if the body is reacting to it).
I also note that your daughter has a complete IgA deficiency (this could account for some of her gastric symptoms). IgA deficiency can be associated with autoimmune diseases - coeliacs being just one. Lupus (another autoimmune disease) is potentially another (though I'm in no way suggesting that your daughter has this). If your GP hasn’t done so already it would be a good idea to ask them to do a blood screen for autoantibodies - these can take time to appear so if her issues continue they ought to test every six months if she is still unwell). If any of these are raised, she will need to see a paediatric rheumatologist for further blood tests and investigations (GP's can only do the basic tests).
Here's a link to the Immunodeficiency Charity where you can read further information about IaG deficiency (if you hadn’t found it already).
IgA deficiency can be quite complex, as can autoimmune disease (if she has one) so it might be a bit of a long haul if either of these are the cause of her ill health. There are many autoimmune diseases that can affect people of any age but if turns out that autoimmunity is involved (other than coeliacs), you can access really good knowledgable help for the LupusUK forum here on health unlocked (many there have conditions other than lupus) and at LupusUK.org. Here's the link to the HU forum in case you need it in the future and you can find LupusUK website via an internet search (usually pops up first):
I would seriously suggest that you do not try any diets for your daughter unless under appropriately qualified medical supervision or in consultation with a fully qualified dietician. I know it’s difficult not to try things when your daughter is obviously so unwell but sometimes making diet changes can do more harm than good, especially when unsure whether or what your daughter's underlying health condition may be.
I'm really sorry that this I happening to her (and you) and it’s quite shocking the length of time people have to wait for appointments now (it was never great before).
Some here (me included) have seen consultants privately to 'get the ball rolling' - some are then willing to then transfer to their NHS lists - though this may be different in these covid times and I'm not entirely sure how this works where children are concerned (though my Grandson has previously been cared for by a private paediatric consultant and the NHS - and wouldn’t you think hat children should get priority!). So terrible that people who need help have to resort to this! I've no idea if that’s an option for you, but worth investigating if it is.
I sincerely hope that you can find some answers soon and she can get on the way to better health. The very best of luck to you both and please post again if you need more support. x
Tuscansun , please note - many thanks.
P.s I have partial IgA deficiency, B12 deficiency and Lupus - and a couple of other things added in for good measure 😐🙂x
I’m really sorry to hear how your daughter is suffering . That’s terrible for you both . I suggest reading Dr Sarah Myhill’s book called “ Diagnosis and Treatment of Chronic Fatigue Syndrome and Myalgic Encephalitis . It’s Mitochondria , not Hypochondria “ ( Amazon - £13.85) She has devoted her life and research to youngsters with symptoms like your daughter . It may well be of help. Best wishes to you both .
No I didn’t know my niece was b12 deficient when we saw him. We are at A&E now and I will ask about it and whether the IFA or MMA test can be done. The waiting list for paediatrics is quite long as is the same for most so nurse said we might be able to be seen a bit quicker.
Have you seen a copy of the results? It’s absolutely essential you obtain these. Being told your results are normal means nothing. I was fobbed of for years until I asked for copies only to find out results were not normal. Now I check and double check. It’s your legal right to have them if they question you
I have a copy of the blood test results as I asked for them. They checked her serum free T4 which was 15.8 pmol/L (range 11.20 - 20.20 pmol/L) and her TSH which was 2.83 mIU/L (range 0.51 - 5.34 mIU/L)
I assume there is no thyroid condition? Although that’s in range, the Tsh should be lower. I’m no way medically trained but I definitely would recommend having thyroid antibodies tested. Tpo and Tgab and also looking on the thyroid discussion group here. There are some amazing knowledgeable people who could advise.
We had no help through A&E, i only went as her fatigue has worsened since Friday and she feels dreadful. We were told they could only run standard blood tests so the only people that can help are paediatrics as they can run all the specialised tests to try and find out what is going on. They checked the system to see if they could find out when her appt might be but she isn’t even on the system yet as having been referred.
GP won’t do intrinsic factor test for another 3 months when he will repeat the bloods to check for any changes, I asked as it was on her results to check that but he said again we will test in 3 months.
We just have to sit and wait and I pray she doesn’t get any worse.
ATS1304 Very sorry to hear that! Do you know what her actual B12 reading was? As other members have alluded, oral B12 will be of no use if she has PA. I was on it for 4 months and my Serum B12 reading was 120 (301-740) pmol/L.
I wouldn't rule out food allergies. They can make you feel awful if you have an intolerance. If the GP won't help with allergy testing you could try these two sites
Unfortunately sitting and waiting won't improve anything with PA. It will likely just get worse and it's a genuinely truly horrible thing to have without treatment. I'd be moving on to the next GP until you get one that will do the proper testing and/or trial B12 injections.
I second food allergies test. If she eat something she is allergic to, her immune system goes into overdrive. It’s indirect way to diagnose a leaky gut. IMO, it’s highly possible and even likely that your daughter health problems are coming from her gut.
Unfortunately I doubt that GP can help to untangle the mystery and you probably need to start with some private tests and/or consultation.
Rather than wait for the intrinsic antibody test, could you have it done privately?Blue horizon are good and I am trying to remember another, but memory...
I’m sorry about your daughter- I really identify with what you described. I am 24 and recently been diagnosed with pernicious anaemia (October 2020), although I have had Heath issues since I was a teenager that I now link to this. I just want to highlight - you mention she was “borderline” low - technically so was I for B12 when I was first tested. I was very low on folate but technically “normal” B12 - this is just testing serum B12, not the active, usable form, so normal means nothing here. My fatigue was also completely crippling and disabling. It was only when I have started and stayed on a high frequency B12 regime under my GP (who has educated herself on PA) that I have been able to improve.Get her an intrinsic factor antibody test or ask the doctor for a therapeutic B12 injection regime. If she responds - you know this is the issue & she should have these injections for life. PA does NOT just affect elder patients like most GPs think.
I am not medically trained, but I have gone through absolute hell this last year with this illness - if I can help anyone on their journey then it makes it slightly more positive.
I’m looking to get the IFA test done privately as when I asked the GP to do it he said we will look at it again 3 months. It’s going to be a long wait for paediatrics so i’m going to have to do what I can for her myself. I’ve started her on 1,000 mcg B12 twice daily but no improvement so far.
You’ve been very lucky finding a GP to educate themself, the GP we saw just said i don’t know anything about it and it’s something you need to ask the hospital. Her folate was normal but at the low end of the range, ferritin again normal but at the low end of the range, B12 below range but only marked as borderline and vit d deficient. I’m not sure how B12 below range is considered borderline when she hasn’t got enough in her system.
I can’t believe people are left to suffer when the solution is so simple and why doctors are not more educated in these things.
In fairness, the IFAB test is not super reliable - especially if you are already supplementing her (I believe it interferes with the test). I was lucky in a weird way also that my IFAB test came back positive as it was very conclusive for my GP - for my sister, who we also believe has PA, it was negative and she is under a different GP practise where she is facing much more of a battle. But this test, as others comment, is 50% false negatives - her symptoms are very similar, though less severe than mine, but then she is much younger... she also had low-normal results. We are totally convinced she has PA after what I have faced.
I only flag this to say to not put too much reliance on this test if it does come back negative for her. The only way you will really know in that case is if the GP agrees to trial in of B12 injections and to see her response (assuming you are using oral supplements at the moment). Note I got worse after the first few, and it has taken me over six months to see significant improvement. This made me totally panic that something else was seriously wrong. It wasn’t - it was my body trying to repair itself again.
It’s a really difficult time for both your daughter and yourself as a parent - I think my illness has been just as hard on my mum as it has been for me living it. I saw on your other comment reply your daughter says she feels like her body is shutting down - this is exactly how I described it myself. At my worst, I truly felt like I was dying slowly. I know that must be hard to watch, as it was for my parents. At times we all as a family felt completely helpless. Ultimately I couldn’t have got through this without the support I got from my parents.
Also the support we got from this platform is what helped us get answers. I took information from here to my GP, and she was receptive. I know I am lucky in this fact, but sometimes it’s helpful to go with some info so that they can read it themselves there and then.
Keep pushing through, I am sure you are doing all the right things - It may take time, but you will get to a solution. Please always message when needed.
Thank you so much, I am so stressed out right now as i’m watching her suffer and she has changed so much from who she was.
I’m searching online for tests that my daughter can have done but everything is so unreliable and some with minimum age restrictions as it’s private. Superdrug do an extended b12 test which tests for active B12 and IFA for £68.99, seems a bit cheap compared to others but there doesn’t seem to be an age limit on that one. I was also thinking an MMA urine test.
I’m going to write to my GP, a different GP who will hopefully listen, print off relevant information and hope she reads it and has some understanding. I’m feeling so desperate at the moment as I know waiting for paediatrics will be a long haul and I feel like she is fading away.
I am not surprised you are very stressed, but she is very lucky to have such support in you. So much of what you are saying resonates with my story - my parents said when I was at my worst I was a shell of who I once was - an active, sporty, enthusiastic, bubbly young person who could no longer get themselves up the stairs. It’s a scary thing to go through, but I can assure there will be light at the end of the tunnel. Even looking at the symptoms your daughter describes - literally was my exact list - the worst was fatigue/ weakness and burning /“prickling” legs.
The most helpful thing for my mum was actually becoming a member of the pernicious anaemia society - I know she made use of the helpline a couple of times when she was feeling very desperate for my sake just to get advice on what to take to the GP etc. It’s helpful speaking to people that are very familiar with PA, as we had never heard of it before.
Just a little update, I’ve been getting my daughter to take 1,000mcg B12 twice daily and last week over half term she improved very slightly. She’s had a bit more energy and wasn’t falling asleep all the time but most of the other symptoms remained. The last two days she’s been forgetting to take the tablets and today she woke up feeling awful and the tiredness is back with a vengeance. I’m thinking it does look like B12 is the reason for her symptoms but would missing two days of the supplement make a difference to energy that quick? I also think she might need a higher dose to further improve but if it’s making a difference then she must be absorbing it.
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