I have posted a copy of my 15 year old granddaughters blood results
She has been having various symptoms for around a year or so now
She has had her B12 tested before.. which was slightly higher than this reading.. but she had been drinking energy drinks to try to get over the fatigue.. so this is the first accurate test.
Gp referred her for various tests including ecg's etc.. everything came back clear apart from inflammation on her elbow
Her previous blood tests have come back low folate ferritin and vitamin D.. for which she supplemented.. but as you can see they are all fairly low again
Her mum received a message from her surgery today stating "all levels are normal apart from slightly low vitamin D , which she has on repeat prescription "
What I am needing help with is finding the correct medical article/s to show that her level is not OK ...and that it is B12/folate deficiency that is causing her symptoms, and the importance of correct treatment especially given her age
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Lincsangel1
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Hi Lincsangel1, sorry to hear this, tough situation.
Take a look at point 5 in this letter writing template, and any other points that are relevant b12deficiency.info/writing-... Includes links to NHS and papers about "normal" b12 levels. They should test Active B12, MMA, homocysteine, and the antibodies.
Do you or your granddaughter's parents have diagnosed pernicious anemia? If so, that is now considered in the UK]s new (draft) NICE guidelines.
B12 and folate both obviously low. Do not treat folate until treatment for B12 is started!
Ferritin is also low. You may want to ask for a full iron panel, and then supplement on your own if levels are low: serum iron, % saturation, TIBC, and ferritin.
Thyroid also doesn't look great. While FT4 is good, TSH looks too high especially for a young person. I would get another test that includes FT3 together with TSH and FT4, as well Antithyroglobulin Antibody (TG Ab) and Antithyroid Peroxidase Antibody (TPO Ab).
Blue Horizon will test children if you need to get private labs (wait I can't remember if you are in the UK?) thyroiduk.org/help-and-supp...
Hoping others will have good ideas too . Poor child, I can imagine she feels horrid. Thank goodness she has you to watch out for her 🥰🙏
I have low B12.. my level was 122 , while supplementing, when I was first tested.
My mum also has low B12... her mum died of stomach cancer...B12 deficiency?
She has been really unwell for around a year now.. had no end of blood tests..and been prodded and poked by various ' specialists'
She was drinking red bull daily to try to stay awake..which obviously elevated her B12 on the blood test.. I think the highest it has been was around 320
All of her symptoms, including having a seizure last year , indicate/ point towards B12 deficiency.
She has had several courses of folic acid..ferrous fumarate..and vitamin D.. but every time her levels drop again.
She has missed out on so much school, and socialising, as she spends most of her time in bed.
She has the same GP as I do... I just so desperately need him to see what the issue is.
I did compose an email last year that her mum sent to the GP..but nothing was done.
Now her level has dropped to 236 something has to be done before it gets any worse .
I will get her mum to check her previous results regarding thyroid testing she has had done . It's not something I know anything about. Should it be a lot lower? X
PA and atrophic autoimmune gastritis are risk factors for stomach cancer I'm sorry to hear that x You should all be getting regular endoscopies to monitor.
I really feel for her and your family. I think you have to take the bull by the horns and poke prod plead and not leave the practice until they agree to a trial of injections. Negligence really, isn't it, letting her suffer like that with that family history. And I would tell them that too - do they want to be responsible for her failing school when b12 injections are completely safe and cost next to nothing?
A median TSH is around 1-1.5 in adults, not sure exactly about teens but i don't think it should be 3. Full thyroid panel including FT3 & antibodies is important.
You could try to enlist the help of the PAS or Tracey Witty.
As someone who was diagnosed with Asthma at 2, Relapsing Remitting Multiple Sclerosis at at 17, PA at 21, then Hashimotos Thyroiditits and Uveitis in my 40s, I’m an Auto Immune disease magnet!! 😶
I’m in excellent general health otherwise and have managed all my conditions well over the years by following my Consultants advice plus a ton of my own research on how to help myself so I have a accumulated a huge amount of information on Autoimmune Disease.
Looking over your beloved granddaughters results here are my thoughts and recommendations.
1. This is the MOST important abnormality that screams out at me.
Her Vitamin D level is dangerously low and we now know that low Vit D is the key pre-cursor to Auto-Immune Disease.
You can easily and cheaply by Vitamin D3 with K2 4,000 units softgels on Amazon or many other reputable health store websites
She needs to start with either 20 gel caps at once once a week, or two gel caps a day to get those levels up fast.
There is no evidence that anyone has ever “overdosed” on Vit D and most people with MS take this amount to reduce inflammation and manage their symptoms
After 8 weeks she can reduce to one a day or 7 together at once, once a week.
She will begin to get her energy back and feel better FAST my lovely plus will prevent any Autoimmune diseases from manifesting.
Exposing your arms and legs to sun for 30 mins a day should generate enough Vit D, however the U.K. just doesn’t get enough sun, and some people are genetically not so good at making it that way.
Did you know that the further you move from the equator, the more auto immune disease there is?
So much so that there’s even more in Canada than the US, and more in Scotland than England & Wales
2. Her thyroid values look ok to me and I’ve read many many so I’d rule that out for now. Her TSH is at the higher end of normal, but in isolation ie without seeing previous blood results to assess & establish whether there is an upwards trend, it remains Normal.
Her free T3 & T4 values are good so at this point the higher TSH would be asymptomatic
The GP will have access to the previous results and can line chart them to visually monitor whether or not an upward trend is occurring. Were that to occur, it would be a Red Flag to them for Hypothyroidism
3. Her Folate and Ferritin are at the lower end of normal, but still normal. Again, without seeing her previous results to see if downward trend is occurring, the values remain Normal.
Again, I doubt that at these values your granddaughter would be experiencing the significant & life disrupting level of symptoms that the sweet girl is. It breaks my heart to hear of how she is struggling at that age as I’ve been there ❤️🙏🏼
So I would remain watchful, but be reassured that she isn’t currently clinically anaemic either Iron (ferritin) or B12 (folate)
4. I did look for a CRP result (C.reactive protein) which indicates the level of overall inflammation in the body but could not see one? That would be useful as it is generally elevated if an Autoimmune Disease is present (although I realise that you were working on the premise that she may have non PA B12 deficiency which is not an AD.)
5. Another reason i wanted to see the CRP reading is that her Neutrophils are a little low.
This can often indicate an active infection, often a chronic UTI. Has she has her urine tested?
6. I try to always work collaboratively with my patients.
It may be worth suggesting to your GP that she has a trial of B12 (Cyanocobalamin) injections to see if it helps her.
It is extremely low risk and certainly would not harm her even if that transpired to not be the issue. It’s a very low cost medicine a fast to administer by the practice nurse.
I would be open to such a suggestion, or indeed any such suggestion by a patient providing that it would not harm the patient.
Listening to the patient is the most important part of any GPS work.
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Your concerns are well founded and your grand daughter needs appropriate medical intervention re b12 and other vitamins. As others have said the high tsh with high t4 looks odd and merits further investigation with a full thyroid panel.
236 B12 is pretty low. What are her symptoms? Primarily fatigue? B12 deficiency will cause that for sure. Fatigue may be resolved with even a single shot. Try to see if you can give her a shot and see if her fatigue improves. If so, that is the reason. In any case, with B12 at 236, a couple of B12 shots won't hurt.
Also, her other symptoms of low folate and iron is indicative of low stomach acid, so she may need life-long supplementation of all these.
Absolutely. These issues are very common in patients with Gastrointestinal issues which necessitate long term use of Stomach Acid Inhibitors (Proton Pump Inhibitors) like Omeprazole.
I note that her TSH is over 3 and this would probably lead to treatment for underactive thyroid in other countries but the UK had a very wide range of what it considers normal re thyroid. This could explain her tiredness. Jade has given some really good advice.
If serum B12 test result is low within range and the patient presents with symptoms that would make a GP suspect B12 deficiency (a borderline case), a methylmalonic acid (MMA) test can be used as a confirmatory secondary test.
MMA should be within range in a healthy person or a patient once they have had their loading course of B12 injections. The MMA forms links with the B12 in bloodstream to enable B12 to reach cells and tissue. Insufficient B12 will mean waiting MMA builds up.
[If there is a malfunction issue, both B12 and MMA can build up in bloodstream.]
MMA tests can be requested by a GP. Not always easy to get this done - smaller local hospitals do not usually provide this test. But for a determined GP (mine was successful on her third request) possible. In fact, the new NICE guidelines will rely on this being the case.
There are other routes but would involve secondary referrals and possibly a long wait: I was later given four more MMA tests from NHS Haematology consultants. The sixth test was from Adult Inherited Metabolic Diseases - and was finally mid-range. It had taken 3 years of frequent B12 injections to get it there, though !
There are two eliminations to be made, should MMA be raised or high:
renal problems, a simple blood test that could be easily requested at the same time (or before), and a small intestine bacterial overgrowth (SIBO) test. This is a fasting breath test series over the course of 3 or 4 hours (this one was requested by my NHS haematologist) . SIBO bacteria feed on host's B12, among other vitamins, and can be eliminated with antibiotics.
With B12 deficiency, the other usual test results to watch are folate, ferritin, vitamin D and thyroid. Once B12 issues properly addressed, these can still take a couple of years to stabilise at healthy levels even with regular monitoring and supplement advice from a supportive GP. I was found to have osteoporosis of the spine, so now have vitamin D on prescription.
My folate at lowest was 5.5 and ferritin 36, B12 196 ng/L (range started at 197) - nothing particularly dramatic if you look at ranges. But plenty of symptoms, and increasingly difficult to function. Sleeping 14-16 hours a day was usual by then.
Difficult to know what levels should be for younger people so I would certainly contact PAS or Tracey Witty as Jade has advised. They would be likely to know; sadly not as rare as you'd expect for children to have problems.
You are absolutely right in thinking that correct treatment and prompt response vital -particularly for this age-group. Something going on within your family, a point which should be reinforced with GPs/consultants. Might help with referral decisions.
My d3 levels were quite high so my doctor said to take them 3 times a week and the gabapentin doesn't seem to work so I'm also on tramadol, baclofen and kolonopen. I still haven't taken the kolonopen because I don't know what the effects will be
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I'm sorry to hear that x You should all be getting regular endoscopies to monitor. 
12 Year Old PA?
What's wrong with me?
Does low B12 and Folate indicate Pernicious anaemia?
New here and desperate for advice on B12 deficiency
Daughter still struggling Update.
