My youngest daughter, 17, has low B12 (181ng/L, so not low enough for our GP to take any notice), inherited from me (141ng/L and now self-injecting) and her grandmother (hospitalised on intravenous B12 for several months in the '50s). She has quite low folate at 5.5. Iron levels seem okay at 25umol/L and 55.3ug/L ferratin.
Unlike me, she doesn't have the neurological symptoms, She's extremely tired (sleeping at every opportunity beyond normal teenage/exam fatigue for at least 3 years), struggling with depression and panic attacks for 2 years, anorexic for 4 years, prone to UTIs (kidney stone last week), hair loss and palpitations.
I have the option of self injecting her now that I have the confidence and the kit to do it. I really believe that B12 can turn all those issues around, but I'm anxious about stories of 'reversing out' with worse symptoms before she recovers, which would impact her A'levels even further. Her exams start in less than 3 weeks.
Do I start injecting her, or wait until the exams are out of the way? Sadly, our doctor is no help at all so I'm turning to you experts!
Thanks for your time.
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Cotswolds23
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Has she ever had a B12 injections? If not, the first one should be done by a medical professional, or at least within a medical setting, because of the very slim chance of an allergic reaction.
That'll be tricky with an anorexic, but I'll certainly look more into iron supplements. Thank you. Meanwhile, I'll be eating liver pate and venison myself!
seriously 181 is severely low. I was 190 and felt like death. She definitely needs shots.
Convince the doc to give her one shot just so you can see how she reacts. Then get your own supplies and do injections. I had to do daily injections and still do 3 years later.
The getting worse before normal is unavoidable and if treatment is delayed, neurological damage can be permanent.
Basically what causes the "getting worse" is all the cells that couldn't be generated or that were damaged are now all regenerating/healing but all at once. It goes away after a few weeks.
I am dreadfully sorry to read about your daughter and yourself. There really is no point delaying Hydroxycobalamin injections. It is definitely worth talking and putting in writing to your daughter’s school to explain her poor health and how it will impact her exam performance.
She is poorly without the injections and may be even worse with but that is for a limited time. She does have youth on her side which is never to be underestimated.
Like BeachArt and Nackapan has said the first injection is to be performed in a medical setting. Research aesthetic clinics, there are plenty of qualified doctors and nurses there.
Lots of deficiencies and other illnesses can result in anorexia. It is a symptom not a diagnosis. The medical definition is ‘lack of appetite’. A person can be too exhausted, in too much physical pain, is constantly nauseous to undertake the simple activity of eating.
It also goes further, if people struggle to eat then they cannot make appropriate levels of hormones and neurotransmitters. Special messengers that act on nerve cells.
There is one particular hormone which is very important to cue hunger. It is called ghrelin. So, your daughter most probably has lower levels and this also means that she does not feel the sensation of hunger. Similarly, neurotransmitters are impacted and for your daughter, she is experiencing amongst other issues panic attacks. In this instance, it appears that she may not be producing enough of the neurotransmitter, GABA.
I recommend a multivitamin/mineral and injections just to start. A symptoms diary. Plus, buying Datis Kharrizhan’s Why Isn’t My Brain Working. It is a dip in and dip out book with case studies. Please know that you can buy GABA over the counter but it is a waste of money. It is too large a molecule to pass through the Blood Brain Barrier. Please Google if necessary.
I'll chime in as my deficiency started to get worse around the exact same time, when I was 17 and about to start A-Levels. It is a risk for sure. And I think only one you both can make together. I was a straight A pupil, had the AS and predicted grades to apply for Oxbridge. Got an A* in my German speaking, a 30 minute unscripted, fluent conversation about the mechanics of the car of all things! I came out of my A2 exams with an E in German listening, and Ds and Cs in the others. I was absolutely horrified. With the weighting from my AS exams I ended up with ABBC (from predicted AAAA).
Anyway, all of this is to say that I strongly suspect B12D (and I had severe iron deficiency too) played a part in that - the actual A2 exam papers weren't any harder than the practice papers I'd been doing. I had symptoms that I now know are B12 related the few months before, and of course we know stress can cause a sharp deterioration of the condition. So if I had my time again, I would start injecting now. I'd do EOD and hope the reversal symptoms aren't too bad, if I don't have neurological symptoms there's a good chance of that. BUT, I'm coming at that with my years of experience about what the last few years have been like!
For me, now, I felt mental improvements after 3 or 4 weeks of EOD injections (and I'd been deficient for 19 years with severe neurological symptoms!) For the first two months, my main reversal symptoms were potassium based and easily rectified with drinking 1L of coconut water a day (chest pains, heart palpitations). I had huge issues with concentration, I worked full time before my eventual diagnosis but only got 30 or so usable minutes out of the 8 hour day as my brain just couldn't focus. That lifted after only a few weeks. That's the main piece of info that would have me choosing to inject at this time.
However I can also see the other side, not wanting to risk the symptoms impacting exams when you could just start the treatment a few months later. I really don't envy you both because that's a hard decision to make, I'm almost glad I didn't have to make that decision. Make sure you're both on the same page so you can go through the journey together, and to be honest, it's great your daughter has such as strongly supportive and caring parent to help her through this, with good knowledge of B12 deficiency! Best of luck x
Hi Nackapan - how lovely of you to ask. Thank you.
Sadly my daughter is now dealing with problems caused by a 5mm kidney stone, so in a lot of pain and my concerns over her B12 levels have taken a bit of a back seat. She isn’t keen to try the jabs in any setting currently. Now that she’s just turned 18, she has joined the adult waiting list system so won’t be seen by a consultant until mid July.
The good news is that the pain means she will get extra time in exams - we just have to hope that her kidney stone won’t be playing up on the day, for the next 5 weeks. So injections are off the cards until exams are finished I think - meanwhile supplementing as much as possible with sub lingual spray and folic acid and iron tablets. And trying to keep positive! First exam on Friday…
Will take on all the lovely advice offered. So pleased not to be on my own but have this group’s advice and support. It feels quite something to be heard, when the doctors show no interest. Thank you.
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