I’m hoping someone can help and give me some advice. My 16 year old daughter is having a very difficult time at the moment and has been increasingly withdrawn since October. Her main symptoms are fatigue and very low mood. I’d actually class her as fully depressed. She’s unable to leave her room and doesn’t wash and barely eats. After going to the GP three times they just told her to look online at a mental health website as CAHMS is totally backlogged. Of course I wasn’t happy with this and arranged to check her bloods via Medichecks. I went for an advanced thyroid function test as I myself am hypothyroid but also it captures a fair few vitamin markers. Here are her results:
Ferritin: 47 ug/L (Range: 30 - 207)
Active Vitamin: B12 39.7 pmol/L (Range: > 37.5)
Vitamin D: 88 nmol/L (50 - 250)
Folate - ‘sample error’ due to finger prick
CRP: 1.09 (<3)
I’ll leave off the full thyroid panel as I’m an active member of the HU thyroid group so can ask there on those. Needless to say TSH was raised and T4 on the lower side and TPO raised.
Other things to note she has gluten intolerance but was never checked for coeliac.
My biggest concern is her low active b12. She’s not vegetarian but doesn’t eat a great deal of meat or leafy greens.
I’ve pushed the GP for a full blood panel and should have the results next week. Am I right to hold off giving her any b12 and iron supplements until after her blood test? I don’t want to skew the results. GP unhelpfully stated that low b12 doesn’t cause depression.
Many thanks 🙏
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GussyG
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Yes, hold back on any supplements until after the blood tests for an accurate picture, and hope the full blood tests trigger some effective treatment for her. Slightly disgusted she was dismissed so readily. Wondering whether you went with her? Young women are so often not listened to by gps, and a witness sometimes helps. Wishing your daughter improvement very soon, you must be so concerned for her 🙏🏼
Thank you Myoldcat, ok will hold off supplements. Yes I went with her each time and pushed as best I could. I’ve been on the phone at least 5 times and back to the surgery 3 times in the last month, which has been hard graft with the current system. ‘Fortunately’ ? I’m now quite well versed at not accepting ‘within range’ and will keep fighting until she gets help.
Thank goodness she has you in her corner! But it's exhausting. Very best of luck - because that's what it often feels as though we need to get a correct diagnosis and treatment.
Is there a history of PA (Pernicious Anaemia) or other autoimmune conditions in the family?
If yes, I'd expect GP to consider the possibility of pernicious anaemia and coeliac disease, both autoimmune conditions that can lead to B12 deficiency.
Has her GP got a full list of her symptoms especially any neurological symptoms?
B12 deficiency symptoms lists
PAS list aimed at health professionals (uses medical terms)
PAS membership is separate to membership of this forum. Parents sometimes join on behalf of children. You do not need a PA diagnosis to join PAS.
If you suspect PA and GP thinks she is too young to be tested for PA then PAS (Pernicious Anaemia Society) has leaflets on juvenile PA that you can print out and pass to GP if you join. Lots of other useful leaflets too.
If you have the time and energy, I recommend searching for and reading these.
1) "NICE guideline B12 deficiency" - published 2024 and aimed at people aged 16 and above
NICE stands for National Institute of Health and Care Excellence.
I have some reservations about it, too much emphasis on treating with oral B12 as an alternative to B12 injections in my personal opinion. There are some good bits though.
2) "NICE CKS Anaemia - B12 and Folate deficiency" updated in 2024
CKS stands for Clinical Knowledge Summary.
3) Try to find the local B12 deficiency guidelines used by your ICB (Integrated Care Board) in England. Health Boards in Wales/Scotland.
If you can't find them online, best bet is probably to submit a FOI (Freedom of Information) request to ICB/Health Board asking which B12 deficiency guidelines they use and for a link to or copy of them.
The treatment patterns and diagnostic process can vary from that outlined in NICE documents.
If you search forum posts with terms such as "parent", "daughter" "teenager" "student" etc that should show links from people in a similar situation. Click on Posts tab at top left of screen if on computer (just above title of your thread).
Thread below mentions a young person... started a few days ago.....might be relevant.
Time is of the essence in treating B12 deficiency.
I left some detailed info in these threads eg B12 books, links to help those struggling to get adequate treatment in UK, organisations to contact if unhappy with health experiences etc.
Search for "Wolffenbuttel B12 deficiency" to find other articles he's written, including one for Mayo Clinic in US and one for BMJ (British Medical Journal).
In my personal opinion he's one of the few doctors who understands B12 deficiency.
4) B12d.org online talks may be of interest to GP.
There are none listed for March but keep an eye on their website.
Try to get some support if you suspect she has B12 deficiency eg from PAS (Pernicious Anaemia Society). The person who runs B12info.com has supported some people on this forum.
Parents of children with suspected B12 deficiency are not always listened to and the lack of knowledge about B12 deficiency among some health professionals is shocking.... to be fair to them there is very little in their medical training.
I think I'm right in saying that the NICE B12 deficiency guideline has nothing about children younger than 16 because they couldn't find someone with relevant knowledge to serve on the advisory panel.
I'm assuming because she is aged 16 then she may be treated as an adult.
Other health professionals may be of help
Just thought of something else, does she have any mouth symptoms that are suggestive of B12 deficiency eg sore, inflamed tongue, mouth ulcers, splits in tongue etc?
Search online for "B12 deficiency mouth symptoms" and "B12 deficiency tongue symptoms".
Sometimes the route to diagnosis can involve other health professionals eg dentists, opticians, physiotherapists, podiatrists etc. They may be able to spot signs suggestive of B12 deficiency and write to GP.
Dentists were discussed recently on the forum in this thread.
Interestingly she has a dentist appointment tomorrow so I’ll ask. I got a brief tongue poke earlier and nothing stood out although her lips are very dry and cracked and bleeding. Maybe from not drinking enough 😢
Thank you Nackapan, writing symptoms is a good idea. Sadly not really anyone else she’ll speak to although she did make contact with a counsellor from the Kooth website and I’m encouraging her to reach out again.
You've had very good advice already. All I'd add is:
Worth getting the books on B12 by Sally Pacholok and Dr Chsndy.
Dr Chandy's book has a particularly useful symptom checker table. Definitely worth listing all symptoms with any neurological ones first.
Also watch the film Sadly Pacholok free on YouTube. It will give you an idea of the widespread poor education of doctors on this subject, and the toffees of attitude your daughter and your may have to face.
Worth reading the (online) NICE guidance on B12 deficiency do you know what your daughter should be offered.
B12 may not cause depression per se. But it is often misdiagnosed as depression. When it gets to the point that someone has extreme fatigue (I was sleeping 16 hours per day) then the fatigue lowers your drive to do things and have a normal life so it can look like depression.
B12 deficiency certainly does cause a whole range of mental and emotional changes. From personal experience, I lost all pleasure and joy in life - anhedonia - and my thoughts were consistently more negative and angry. So different from my 'real' self, but a slow and insidious onset so it didn't ring alarm bells. Just thought I was becoming a GrumpyOldCat! Combined with teenage hormonal turbulence that will be a lot to deal with. But on the positive side, once on eod injections these symptoms improved more quickly than the physical ones. Hope you feel well prepared for the gp now, and that things start to change for your daughter 🙏🏼
Thanks Myoldcat that’s interesting to hear. If anything in think it’s almost a relief that it could be a vitamin deficiency as a cause for mental health deterioration as it’s something you can attempt to ‘fix’ a little easier? Depression of unknown cause with no help from local mental health services left us without any help whatsoever, and seems like a much bigger issue to deal with.
It’s been a slow decline for her, around 4-6 months if I think about it of worsening apathy, fatigue and now depression.
Btw I just re-checked her tongue and it’s bright red. Is that another sign that things are off?
Totally agree, when my B12 jab is needed I feel much more despondent. I had to change doctors eventually due to scathing comments of GP and what a change a holistic doctor makes……… changed my life 😊
Yes, red, possibly enlarged, may be smooth, sometimes described as 'beefy". Ask dentist specifically whether they think it could be B12 deficiency glossitis, in writing if possible - more ammunition for your gp meeting.
You might want to check on Google images for "B12 deficiency oral symptoms" so that you are more familiar with potential conditions: burning tongue, ulcers, angular cheilitis (sore cracked and bleeding esp corners of mouth), deep groove in centre of tongue, large tongue, red smooth tongue .... I just checked to ensure it would be useful, and saw my own tongue on there !
Re Ferritin at 47 : My GP thought ferritin below 60 ug/L could cause some deficiency symptoms -but Oral Medicine consultant thought that it would be more beneficial to get ferritin above 80ug/L.
Try to get folate level checked again. I doubt her level is good but even if it is it's a useful marker.
You are doing all the right things for your daughter and hopefully will get help soon. Hormonal changes difficult enough without deficiencies - and I would not be surprised if linked. Menopause seems to be some sort of catalyst - so she has just been unlucky in getting problems at such a young age. On a more positive note, being young could mean a faster recovery - so concentrate on getting help with these issues, as sometimes the sources of help are unexpected: dentist, hairdresser, optician, ENT specialist ...... all of these have been recorded here.
GP clearly needs to be onside: don't look for an expert in B12 deficiency, look for someone who will be proactive and mostly, who your daughter feels she can trust.
Also, plenty of support for both of you here if and when you need it.
Yes I’m sure she does too. Incredibly painful periods point to that. Not an easy quick fix, certainly without paying for a private functional doctor, which we can’t afford. NHS don’t treat it, just offer the pill. A rotten time all round for her really. I’m hoping once I start her on some good supplements it gives her a small boost to be able to eat a little better and start to have a bit more energy to take care of herself a bit more. In the meantime I can tackle the GP.
You can get Hormone Imbalance supplements on Amazon. A company called 'Igennus' on Amazon do a good B12 sublinqual tab 1000mcg (dissolves under the tongue and goes straight into system and bypasses the stomach). Chat with doc about them. I use the B12 sublingual and my B12 has gone right up...hope this helps...best wishes to you and your daughter👍
I think you’ve probably already answered your own questions as likely to have autoimmune thyroid disease (did you check her FT3?) and low B12 issues (alongside less ideal iron and Vit D). They go hand in hand. Sadly getting the medical professionals to help may be an uphill battle so you may have to go at it alone. Thyroid and B12 do cause the mental health and energy issues you mention absolutely 100% so as you say, in some ways, you know it can be fixed! Definitely don’t supplement until testing is complete but then you need to go at it!! Good luck! Lots of private GPs that are versed in thyroid and B12 which you may have to use or eventually self inject.
Thanks Rachel, it’s reassuring to hear more and more people say it can cause the mental health issues. I had no idea. She has her blood test tomorrow morning and then I’m going straight in with the b12, iron, folate and vit D! I’m hopefully they will help a little at least in the beginning. My own ferritin was very low and I managed to boost it pretty quickly with Iron Repair (haem iron). I’m prepared for the battle and doing things alone if necessary.
Have you heard of megaloblastic madness?! That’s basically end stage B12 deficiency. The Chap that set up Club B12 very sadly lost his daughter (suicide) to veganism (and thus low B12) when she had a moment of depression/madness due to this. It’s common and definitely a cause of mental health issues.
i really feel for your daughter, mine 26, has just been diagnosed with B12 deficiency , see recent post on my profile..... her thyroid / TPOab are ok, so her issues are not clouded / added to by thyroid issues which your daughters sound like they might be ..... and yet she has been suffering from depression and worse in recent months .
She's just finished 2 weeks of every other day B12 injections, and is already starting to feel and look significantly better.... and appetite has started to return a bit . But the difference in mental stuff is already huge ..... we had a conversation last night saying it's like parts of her brain just woke up and she hadn't really realised how asleep it had been.
on the day of injections it actually sent her brain nuts ...and not in a good way... violent anger/ road rage/ suddenly suicidal and back again within hours out of the blue .. so it's been very up and down . But b12 / lack of it, is clearly capable of creating all sorts of mental havoc~ so there is every hope that improving your daughters b12 will improve her mental state... you're correct , don't supplement until GP has tested it, just in case its actually deficient rather than low end of range.
sending you a hug.. and sending your daughter a hug too ..... it's not fair is it .
re the lack of help from mental health services ... my daughter would agree .... a few yrs ago she sought help from NHS for depression following a breast cancer scare/ bereavement in short succession, and being given a phone number to sort yourself out when you are in a proper mess mentally is so dispiriting ... and the phone calls /tick boxes/letters from them (and the waiting times) actually left her much more depressed than she was before she asked for help. She took matters into her own hands and found a counsellor privately that really helped her ... fortunately she has a job and could afford it herself ... but it was the best thing she ever did , and helped her enormously at the time ..... the NHS mental health offering was positively damaging to her mental health ....... so even though cost of private counselling may be an issue for you ,,, i can recommend looking into it. You never know there may be some local scheme/ charity etc that is affordable .
Hi Tatty! I know your name from the thyroid group 😊, thanks for sharing your story. It’s so great to hear your daughter has made big improvements on the injections, that’s really given me some hope.
“like parts of her brain just woke up and she hadn't really realised how asleep it had been”
🥹 gosh this has made me a bit emotional!
If I ever won the lottery I wouldn’t buy houses or cars I’d get my family tested for all major health markers and get the best treatments out there!! I have to say I now ask myself the question ‘is contacting the doctor going to cause more stress and anxiety than not and can I sort this myself?’
it's so hard to know what to do for the best,,,, knowing that going to GP can cause more problems / gaslighting if nothing specific found , especially if 'iffy' mental health history is involved , she got thyroid tested several months ago by friend in A&E and when that was ok, she went with "ok , i've just had a very stressful year which is over now , have had insomnia for months which has improved now , so the other things will sort them selves out in time , so i'm taking my focus off health issues for now , it's not helping me.... i'll just keep doing the good stuff and be patient with myself ' ..... with the intention to do full vitamin testing ourselves in a couple of months if things didn't improve ,,, i knew it would be a good idea , but i didn't want to push it .....i now i feel pretty bad for not pushing for private vit testing much earlier... thank god she happened on a good GP who did.
i just wish we could take it all away from both of them ,,, it's horrible watching your kids suffer.
Have you considered seeing a functional doctor or having genetic testing to check whether she has issues with methylation (MTHFR variant)? It would be good to check her COMT gene too. Her folate result is important to have. Also, has she had her D3 checked?
I've started seeing a functional doctor in Surrey and so many of my long term health issues have been explained by having genetic testing. I wish I had known what I now know years ago.
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