B12 So she has had 5 injections now, one more to go. It is subtle, but the last two days when she comes downstairs she has looked different, still tired but not drained in that awful way. She has also had the busiest social week in about three years and agrees she woud never have done that normally. Too soon to tell, but the change in her face seems promising.
But because I wasn't in the appt to object, the GP has arranged once every three months injections. I thought I had primed my daughter but it seems she hadn't understood! Darn it.
So I plan to write a note to the GP (who I know reasonably well) to ask for more frequent injections. I want to refer to NICE guidelines section for neurological symptoms, but have the feeling the GP doesn't see the need for this. Any ideas as to how to convince the GP? On my daughter's notes GP has only said that fatigue and period issues are the main problems. No mention of neurological.
Iron Honestly the Iron Panel Medichecks versus Gp NHS results -saga just rumbles on. The GP said she could see my daughter's ferritin looked low (29 (15-300 NHS test) so suggested iron tablets EOD. Did not explain or offer an interpretation of Medichecks results which suggest she shouldn't supplement iron (results in thread linked above). Well, there we go....my daughter and I have agreed she'll take an EOD gentle iron low dose supplement for a couple of months then retest (god knows who with to get any kind of clear idea). Would the one from the crazy American website be the best? Haeme? She already gets constipated.
Folate She has good stores but will maintain a dose of 400mcg as part of B complex.
Her stomach seems to have settled down (I posted elsewhere about stomach pains after the first injection).
Thanks for reading.
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Sneedle
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And highlight how it has impacted her ability to function , and you will hold them responsible for failing when she off to school on her own in a month (in your own diplomatic tone - or not!).
Push push push!
Iron - based on this test result healthunlocked.com/pasoc/po... I would absolutlely NOTsupplement iron. Her saturation is already very high, and serum iron is good, and TIBC is very low - indicating very little capacity to bind more iron. As I've said before, I really would seek a referral to hematology. The fact that ferritin is so low compared to the other iron markers is not normal. I am obviously not a hematologist nor medically trained, but found this for example ncbi.nlm.nih.gov/pmc/articl... Neuroferritinopathy - a condition in which iron builds up in the brain and can present with low ferritin. Obviously this is very rare and doctors don't look for unicorns, and I'm not saying you have this by any means, but it is important to continue looking for the root cause. If I search on google scholar for low/normal ferritin (hypoferritinemia) and high transferrin saturation, it all points back to hemachromotosis, except for the above paper.
Hiya Sneedle just saw this post from slowdragon on tuk & it contains links that may be useful to you, see especially the ones under 'good iron but low ferritin' healthunlocked.com/thyroidu...
In some people optimising vitamin B12 and folate will change the ratio of serum iron to ferritin. So in your case, if it worked, it might reduce your serum iron and saturation, and increase your ferritin.
If this does work it suggests you have a (very, very common) gene problem related to MTHFR, which is a gene affecting something called methylation.
applies to both my daughter and me, being methylation strugglers...
So with her regime of b12 loading doses (and hopefully more frequent shots than 3 monthly) and maintenance dose of b complex methylfolate 400mcg, she could raise her ferritin.
Yes that one caught my eye too! I had never heard of that happening so it would be interesting to understand the mechanism, but in any case I hope it will work for both of you!
My husband injects B12 into my arm for me. That way I can have the shots whenever I want to. It is a lot easier than getting a doctors appointment and driving there and back.
Yes that's a very good idea. I would do it and plan to for her (if she agrees!). We live very close to the doctor's so driving isn't a big problem. But someone doing it for you sounds ideal.
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Daughter still struggling Update.
Loading injections
B12 levels 6 months after loading injections
Teenagers symptoms returning 4 weeks after B12 loading injections.
GP has finally agreed to giving me B12 injections but no loading doses ☹️
