Like many of us my hair is falling out extremely bad & month been for over 6 months. I nearly have a bald spot on the top back of my head. I just got diagnosed & started B-12 injections. I’m getting them weekly for a month then going to once a month. When I got diagnosed a month or two ago my B-12 was at around 223. I seen a lot of you said your taking injections every other day or a lot more frequently.
Should I ask my doctor about getting shots more frequently? She also is wanting to text my levels ago a month after the first month of weekly shots. Is it normal to wait that long to test again?
Also how long after starting treatment did it take for your hair to stop falling out & start growing again? I cry all the time.
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AmberBeaver
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my hair loss is finally back to a more acceptable level. I’ve been on EOD injections since the start of July so 2.5 months. And infrequent injections before that.
Is EOD every other day? Was your infrequent injections monthly? If so, how long were you doing monthly & what made your doctor go from monthly to every other day? Also how old are you? I’m only 26 but I seen PA is more common with older people so I wondered if more common injections had anything to do with age.
Yes EOD is every other day. I do 48hrs exactly between injections.
My infrequent injections were monthly. Initially I had 3 x 1 per week. And then 3x 1 per month. I documented all my symptoms and showed my doctor that I was only getting about 48hrs with reduced symptoms, asking her to put me back onto weekly, which she did. I improved a bit on that and she said I could stay on that for a while and manage the injections myself.
I then trialled more frequent injections and have had great success with EOD - an almost complete reduction of all my symptoms (barring when I get sick with a cold or the day before my period).
Normally hair loss takes about 6 months to correct itself because of the cycle of hair growth (that's a general rule of thumb, not specific to B12).If you have neurologic symptoms (see PAS assumption checklist for examples of what they are) then you should be having alternate day injections.
Once you're on injections, checking B12 levels is meaningless (they will be sky high, and should be). But it's appropriate to check co-factors e.g. folate, ferritin and possibly potassium (always checked as part of a routine kidney screen) and magnesium. Folate is always requested with B12 (to reduce the risk of only treating a folate deficiency when a B12 deficiency is also present). It's also an opportunity for your GP to check intrinsic factor.
The fact that you cry all the time suggests that your mood is also affected by your B12 deficiency. If you are not feeling benefit from the injections, then I would request more frequent injections.
What do you mean correct itself & the cycle of hair growth? I don’t understand why it’s going to continue falling out once my B-12 levels are back up. I’m talking folate too because my doctor did say my folate was low too when she saw my B-12 was low. She said she was going to do weekly shots for a month then wait a month & test again & do another shot & go from there once she checks all my levels. My test results for “Intrinsic Factor Abs, Serum” were 1.0, I don’t know what that is. But those are my initial test results when I got diagnosed. I looks like my ferritin hasn’t been tested since early 2023 before this started. I don’t know what that is either.
I do struggle with a lot of mental health issues that I’m medicated for but I definitely think my B-12 levels made it wayyyy worse. In the past year I experienced symptoms I never experienced before.
Do you feel the benefits from your injections right away or did it take awhile? I’ve had 3 of the weekly ones so far. I still feel sleepy a lot. My hair is still falling out in handfuls which are most obvious issues I experience.
Yes! I used to be deficient but I start supplementing & got my levels up months before my hair started falling out. My B-12 & folate were super low & my Antiparietal Cell Antibody Was 127.4
rip 😭 How long have you been on injections, what’s the frequency & how old are you? Is it still falling out or did it just never grow back in where it had fallen out?
It started to come out around my temple area when I was in my late 50s/early 60s and has never grown back and is now quite thin all over even though I use a caffeine shampoo and use a soft massager to stimulate my scalp have also tried a number of hair treatments, I grew it long over lockdown and what does grow is in good condition .
I am injecting every other day and I am about 4 months in with the odd set back. I’d thinned and receded a lot. I defo have thicker hair again. But not sure if it will all come back .
Did you doctor have you start with every other day infections right off the bat or what frequency did you start with? & are you younger or older? I was wondering if age played into frequency of injects at all
I think if you are in doubt and in the uk maybe go to the Cambridge blood clinic, it’s best to have a dr or specialist advise you than following other people’s advice that’s not tailored to you.
I am 45 my b12 was 130 and he thinks I have pernicious anaemia due to arthritis. He said every other day for 1 year.
Again maybe go see dr Klein and get advice tailored to you.
Sorry to hear you are feeling so low. I agree with the others here - that can be due to low B12.
Yes, hair can fall out because of B12 deficiency, but also due to other things that could be low too: useful to have folate, ferritin, vitamin D and thyroid checked - and if low or low in range, treated and monitored regularly. B12 after injections will be high, which won't need monitoring.
A good doctor should be treating you at a frequency that works in controlling your particular symptoms, rather than concentrating on what you blood tests say about the level of injected B12 in your blood. It can help her to see how this deficiency affects you by listing your symptoms and going through them with her. I kept a daily chart of my worst ones, just so that I could see whether these improved at all when I had my injections. This way, you can see whether you need injections more frequently -and can then chart how you are managing on that.
When I was getting B12 injections, and both folate and ferritin treated with 3 months' worth of tablets, my hair stopped falling out. I can't remember how long that took for me - but we are all different and hopefully your age will be a plus in recovery !
Hope you soon get this under control. There is plenty of support and advice here from people who have gone through this - and it helps just to know that they are here.
My thyroid & Vitamin D are normal but my folate is low too, I’m supplementing now. She didn’t check my ferritin but I’m going to ask her to when I see her!
Do you think the folate & ferritin is what helped your hair stop falling out more so than the B-12? How often were you doing your injections? If they were every other day is that what she started you off with? But thank you so much!!!
Do ask about ferritin. My GP said she thought that below 60 ug/L, a person could be symptomatic - but later my Oral medicine consultant said he'd like it to be above 80. Struggle to get it there though.
Hard to know if folate, ferritin or B12 deficiency caused hair loss - or all three - as treated around the same time. Even though I self inject twice a week, I can still sometimes get hair loss, so have started taking multivitamin tablet twice a week too. No-one now monitoring me on a regular basis, so a bit of guesswork there.
My GP started me off at the usual 6 loading injections within a month I think, then 1 every 3 months maintenance. This seems to be what is on offer generally. The 6 loading injections did nothing, so nothing to maintain really .... got a lot worse. My GP saw that I was deteriorating, tested MMA which gave me a diagnosis of functional B12 deficiency, and started me on as near to EOD as she could get - which was supposed to be 3 per week but was actually twice a week as nurses were too busy (!)
The nurses were unaccustomed to giving more than 1 injection every 3 months, so they were not keen on this new regime. It worked for me though. Everyone noticed the difference: employers, students, work colleagues, friends, family and my delighted GP. She managed to keep this going for 6 months before I blipped - and then sent me to consultants for more answers as she had done all she could do by then.
My hair fell out really badly all over my body and has not grown back. I rarely have to shave my underarms or legs as the hair is extremely sparse, also on my arms it is barely visible. I used to have a very thick head of hair, it is now thin and grows slowly. I inject 2 a week but I have, I think, long covid as I have not felt right since the beginning of 2022. My vitamin levels are fine according to my last blood test.
My levels are all fine, I had a blood test not so long ago, all levels within range, I checked them myself. I am 71 and had a diagnosis 2004, not picked up for a year because doctor didn't look at blood test results properly (told me this in a phone call but when asked why it was not picked up went very quiet and wouldn't answer).
I inject 2 a week and have injections every 6 weeks.
My hair loss began about 2 years after starting injections. We were on holiday and I noticed that the dark brown flooring was a sea of blonde hairs.
I also have what I think is long covid, my son has it too and has been diagnosed with long covid with the same symptoms and cannot work, he is hard-working and worked in the post office all through the lockdown, then went to work in the local hospital and caught a bad dose of covid. I am utterly exhausted and sweating or over heating all the time, makes me more tired. Doctor thinks I'm nuts so I don't go anymore. Walking or any sort if exercise is exhausting, I have to lie down even after supermarket shopping. I am also overweight and cannot loose it, doctor says my thyroid levels are fine.I've stopped seeing the doctor as he does not listen to me, being a woman of a certain age you tend to get ignored by everyone. I used to take my husband in with me when I saw him as he talks to him but ignores me until my husband confirms what I have just said to him. I have found other women who are of the same opinion as me that he his rude and doesn't listen to them.
My experience: The only thing that keeps my hair from falling is eating Calves Liver about once a week. Not easy to do and when I sluff off, and I do, big hair fall returns. Then, that resolves once I continue..
I would get a check on your iron and ferritin levels. Iron deficiency anemia can cause severe hair loss. My hair is falling out but I'm an old man so that has a lot to do with it.
Yes Amber. I buy only calves' liver. The brand is Skylark I think. It comes with servings separately wrapped. I just cook one at a time. The package has good directions. So, I fix one serving and eat a part of the one serving and eat the rest of the serving another day. Maybe would work for your tummy that way.
I see you are in the US as am I. Unfortunately the doctors here will look at you like you are crazy if you request EOD injections. They also believe in testing your level, which actually helped me because it showed that my level would tank unless I had more frequent injections. I now get an injection every other week, which I fought for, but my hematologist will not budge on upping the frequency any more than that.
I too have excessive shedding. Which will get better and then worse again depending on my stress level or if my folate or ferritin get too low. What has really helped me is seeing a nutritionist as most of my issues are from an unhealthy gut due to having COVID at the beginning of 2022.
I hope you can find a doctor who will listen to you and is knowledgeable regarding B12 deficiency. You are a young female which makes it hard to be taken seriously. This forum is really wonderful and has helped me tremendously. Don’t be afraid to be your own advocate! And you can find plenty of advice and support on here 😊.
I have UC & have had my colon cut out & that why my GP said I’m probably so deficient in so many vitamins on top of this. But yes I am in the US too 😭 If my hair doesn’t stop falling out I will cry & beg.
I second the “test your ferritin” suggestion. I now know that the thinning hair I started to see September 2023 was the first sign it had dropped. Starting B12 shots will jump start your body’s iron usage/needs - and many (though certainly not all) find they also need to address iron deficiencies.
My hair loss has cut down dramatically since taking B12 but the lost hair hasn't come back. I have to wear my hair in a ponytail with a thick hair band to hide the bald sections on my head. Mind you I save a fortune in hairdressing bills. I also take B6 which may be helping. It is helping my nails anyway.
Unfortunately the B12 does seem to be helping my leg hair!!!
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