My daughter is 23 and at uni in england we live in ireland. She is at the end of her course and recentley she has been feeling very unwell. Hair falling out pale tired oral thrush breathlessness depressed. She had to come home and her folic acid is low it is just 3 two years ago it was 5 so she is taking 5 mg a day and bloods re check in 6 weeks. She has had terrible burning feet at night for many years now but docs dont know why? her b12 was just over 400? But her cells are larger and overall her blood tests show low iron. She had to go back to uni to finish her finals...far from ideal....she still feels so unwell.....hair loss is really making her depressed. I feel she has more like symptoms of b12? As I was reading you can get false b12 readings. Does anyone else have the same diagnosis with folic acid? And how long could it take for her to feel better? many thanks....Aniaxx
folic acid and b12: My daughter is 2... - Pernicious Anaemi...
folic acid and b12
I understand exactly how your daughter feels. When my b12 (and just about everything else) levels were dangerously low 70% of my hair fell out, I couldn't have anything touching my feet at all, tired all the time and even whiter than usual. It took a long time and a lot of medication including 9 vitamin infusions and enough vitamin tablets too make me rattle. One big thing was the more I worried about my hair falling out the more fell out. In the end I just wore a hat whenever I left the house and used dry shampoo every other wash time.
she has lovely hair and this is really depressing her.....long and thick......she had it cut short few weeks ago as she said her hair follicles in head were sore?....and she found a grey hair today?....did ur hair grow back??
It did but it took a while. I now make sure I condition it really well but mine is very fine so needs it. When it was growing back I went through a phase of getting very sore and nasty spots all over my scalp.
People who suffer with Pernicious Anemia/vitamin b12 issues do tend to go grey earlier but as I've been colouring my hair since I was 12 it's easy for me too cover it.
B12 deficiency is unlikely (though not impossible) with readings of 400 - would be useful to know the units - pmol/l or ng/L? That is presuming that she hasn't been supplementing.
Folate and B12 work together so the symptoms are pretty much the same.
And the symptoms of iron based anaemia are also very similar - all of them could be causing the hair loss.
Difficult to say how long it will take to recover - depends on what exactly is causing the symptoms - if its anaemia it will take a few months.
no she had not been supplementing ....do some people just have folic acid defiency? that rights itself with folic acid supplements? and does not lead to b12 anaemia?
yes, some people do just have folic acid deficiency - and that should correct with supplementation - however there is still the issue of why her folate was low - its much more closely related to dietary intake than B12 so would be good to check on what her diet has been like in terms of fruit and veg.
If her diet is good then there may still be an underlying absorption problem but the oral tablets are basically really high doses and the mechanism for absorbing folate is much less reliant upon one particular bit of the gut so works much better.
There is a video about Dr Chandy, on his site B12.org. showing one patient whose hair returned after given B12 injections:
This site also has a useful diagnostic calculator to give you an idea of whether your daughter is likely deficient or not. Hair loss is confirmed as symptomatic of B12 deficiency:
b12d.org/admin/healthcheck/...
You'll also see from the useful summary in the latest BMJ research document that serum B12 levels are not a reliable indication of B12 deficiency:
cmim.org/pdf2014/funcion.ph...
I would suspect that, fatigue, breathlessness, burning feet, pallor, hair loss, oral thrush, and large red blood cells indicate B12 deficiency.
thanks for all ur helpful replies.....so if u are b12 defient and u take folic acid to raise her folic acid( hers was very low)....would she still have b12 deficiency? normally she could just rest with me and we could slowely sort this out...but as she is in england trying to finish her last year at uni i have no time to wait.....she has been on folic acid for 4 weeks...and yesterday had more hair loss...was thinking about getting her sublingual b12 to see if this helps? although i have read not to do this until u are sure she is b12 or this could mess up how her blood results look?..confused really......really dont want her her to fall out anymore as this is killing her....
Personally, I would write to the GP explaining how vital it is at this stage of her course to be well and ask for a trial of B12 injections - it could make all the difference and you cannot overdose.
b12deficiency.info/b12-writ...
rivm.openrepository.com/riv....
"Deficiency in either vitamin B12 (cobalamin) or folate induces megaloblastic anaemia (“giant germ cell”) anaemia. Pernicious anaemia is caused by lack of intrinsic factor needed in the absorption of vitamin B12. Therefore pernicious anaemia is a kind of megaloblastic anaemia, only caused by vitamin B12 deficiency due to lack of intrinsic factor, a type of megaloblastic anaemia. Vitamin B12 deficiency, but not folate deficiency, produces, however, in addition peripheral neuropathy. Secondly, folate and vitamin B12 deficiency may be present at the same time: "
where i live the health service is rubbish and u have to fight for everything....i know they wont give me b12 as when i asked them what her folic acid should be they say 3.9 is in the range.....when she was looking for help 2 years ago her folic acid was just 5....and she had burning feet....they said she was fine and did not understand about the burning feet.....she was obviously low then.....i will go private if i have too....dont want any more of her hair falling out......maybe i should buy her some sublingual b12? I read this was good?
I know how you feel. I found Jarrows Methylcobalamin 5000 mcg effective but it will of course make diagnosis more difficult.
I now self inject sub cut as could not face the stress of further battles with GPs.
yes i understand i have 4 children one with aspergers syndrome and have had to do so much fighting over the years tired of it.....I think I will get her something b12 like the one u suggested at least until she has finished her uni course in a month or so. by the looks of it diagnosis is difficult also so i will try and find a private doctor. Who whould you see? Which specialist for this time of thing?
I'm sorry it's all so difficult Anka.
Page 5 of the BMJ research document under ' Who to refer for specialist care' might help decide:
"Referrals to haematologist:
• If diagnosis is uncertain or unclear
• the cause of B12 deficiency is unclear
• If response to treatment is inadequate etc.
Referrals to gastroenterologist:
• For malabsorption or inflammatory bowel disorder as required " etc.
If it's any help, many people on the forum self inject and would be able to help source supplies. I'm an oldie but have found sub cut surprisingly easy after now getting the hang of it.
I hope things improve for you and your daughter.
hmmm yes she has had issues with gluten recentley and food allergies although she does not have coeliac. Funny as she also has massive needle fear....so even a blood test for her makes her very very anxious. I am a nurse so i could give her the injection no problem...thankyou for your help. It makes me really frustrated though how the nhs is nowadays...if it was not for me my daughter would be very ill by now...and what if u dont have a caring parent? It should not be this way. Like i say my g.p practise is not great but i have no choice. i am polish and there is a polish private clinic in dublin i am just going to take her there as i feel she has actually been suffering for a few years already and dont want any more damage done. thanks for all ur info has really helped
I've been gluten free for quite a while - this and daily spoonfuls of sauerkraut has helped all gastric issues and, hopefully, 'leaky gut' 🤗
I agree about GPs - many in our family have autoimmune issues - it has been and still is an uphill struggle to get adequate treatment.
yes she is also much better when she stick to it firmly....she is a young student though and sometimes cheats!!!!...I am also gluten free,,,but o.k iron wize.However i do eat things like liver etc....not sure if my daughters one is diet related as she is a picky eater. We use kefir a polish yogjurt which is great for stomach.....i eat sauerkraut being polish my daughter does too maybe i could encourage this more to her....why is this good?
I just knew you would 🤗 Polish lady in local health food shop told me she puts it in stews after cooling. All fermented foods good for the gut but sauerkraut is the best probiotic I ever tried - all my long standing IBS/gastric/reflux etc. problems resolved with daily spoonfuls. You probably already know that many researchers believe 'leaky gut' is the root of autoimmune disease.
"Probiotics that Help Improve Digestion. Microorganisms present in sauerkraut, including those of the lactobacillus bacteria genus, essentially “feed” the good bacteria in your gut, which improves digestive health."
organicfacts.net/health-ben...
thankyou for explaining that!! We make bigos.....huntingman stew...it is a sauerkraut stew with meat i love it!!!....have sent ur info to my daughter as to why she should eat it.....she likes it so should not be a problem....many thanks
Hi,
More B12 Deficiency Symptoms lists
pernicious-anaemia-society.... see Checklist
b12deficiency.info/signs-an...
B12 books
1) "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
2) "Could it Be b12" by Sally Pacholok and JJ. Stuart
I was very symptomatic for B12 deficiency with levels in the 300/400s ng.
Macrocytosis
patient.info/doctor/macrocy...
labtestsonline.org.uk/under...
patient.info/doctor/folate-...
PAS (Pernicious Anaemia Society)
PAS has members from around the world.
pernicious-anaemia-society.org
PAS tel no +44 (0)1656 769 717 answerphone so messages can be left
Who gets PA?
pernicious-anaemia-society....
UK B12 info
1) BSH Cobalamin and Folate Guidelines
Might be worth your daughter reading above document.
b-s-h.org.uk/guidelines/gui...
Flowchart in BSH Cobalamin and Folate Guidelines
stichtingb12tekort.nl/weten...
Flowchart above makes it clear that in UK , people who are symptomatic for B12 deficiency should have an IFA (Intrinsic Factor Antibody) test and start initial b12 treatment. This applies whether B12 is low or within range. It also mentions when PA (Pernicious Anaemia ) can be diagnosed in UK. Flowchart also makes it clear that people can have PA even if IFA test is negative (called Antibody Negative PA).
2) BMJ B12 article
3) BNF (British National Formulary) Chapter 9 Section 1.2
UK b12 treatment info
evidence.nhs.uk/formulary/b...
B12 treatment info is also in BSH Cobalamin guidelines, about a quarter through document.
I am not a medic just a person who has struggled to get a diagnosis.
many thanks.......so complicated...I have a child who is autistic and have had to do so much fighting for him......looks like it is the same for this???Why must it be this way??....Think i will have to try and see a private doc about this.....
Hi Anka,
I don't really have any answers except that I'm in a very similar situation to your daughter - just about 15 years older!
My folate levels are the same as hers and my B12 is in the 300s. I'm also in Ireland. I'm having no luck with GP over here. I have another appointment again today so will see.
For your daughter - could she not see a GP in the UK since she is studying over there? I went to uni in the UK and we had a fantastic student health service.
Regarding the hair. I've worried about mine in the past but it does seem to go in phases. Like the animals on the farm here I seem to "shed" more in Spring like losing a winter coat. I also find I loose lots about a month after I lose a significant amount of weight. Overall though despite very full hair brushes and hair shedding everywhere at times I always have enough so I can only assume those bits are extra! This may not be true with your daughter but hopefully so.
Could you update here if you have any success getting help in Ireland and I will do likewise?
hi mismax...where in ireland do u live? we live in omagh..no she could not get seen in u.k so she just came home in a state. With her hair she has bottom length usually thick hair it is her pride and joy so this is killing her. She never has has hair loss just recently. She cut her hair short very brave. Well I have 4 kids and have to battle the nhs over everything ...sick of it. When she She has had burning feet at night for years we went to doctor he did blood tests and could not find the cause so she remained with burning feet at night. he folic acid at this stage was 5. Now 2 years on her folic is 3? Surely if he had treated her 2 years ago it would not have come to this? Surely burning feet at night is a classic sign of anaemia?? What is ur folic acid? She is taking 10 mg for next few moths. My plan is this when she comes back in 2 weeks get her folic acid checked and ask them to do the mma test and homocysteine for b12 defiency( I have read loads about it last few days). How ever if i get any hostility as i normally do i am going to go private her health is more important than me fighting with crappy doctors which many are...but many are not. I am polish and poles are fanatical about their health over the top sometimes...but for these things they are very careful. For example they take vit d all months without sun ever since i know and i am 50 and we are just starting that here. So there is a private clinic in dublin run by polish docs but anyone can go they speak english. They do everything on the spot blood test etc. I dont think they are overly expensive. I can give u there name etc if u want....good luck with it all
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