PA and hair loss: Hi all. Years ago I... - Pernicious Anaemi...

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PA and hair loss

Wowo23 profile image
31 Replies

Hi all. Years ago I started showing signs of thinning hair. I hated it especially being a hairdresser. Fast forward to 6 mos ago and started having terrible symptoms I didn't understand. Off balance(not good when you're a new amputee) blurred vision, brain fog(couldn't think of simple words), fast heart rate, tingling hands and arms, sleep problems and easy to anger(so not me) Anyway, my oncologist ran a b12 test. It was 92. Further testing proved PA. I started on daily shots then weekly. Finally got my levels to a good place and most of the worse symptoms have eased. Thr great news i'd like to share is my hair is back. I actually didn'

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Wowo23
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Wowo23 profile image
Wowo23

Ugh! Don't know why it sent before I was finished. Anyway, I actually didnt notuce until I went to get a haircut. I had it cut super short in a pixie and while checking it out, my hair was no longer thin!!! I can't tell you how shocked and thrilled I am. I never thought to connect a vitamin deficiency to hair loss. I couldn't be happier

Gambit62 profile image
Gambit62Administrator in reply to Wowo23

if it happens again - you can click on the down arrow next to the like button and edit.

My hair thickened up after I got my B12 levels where they needed to be.

There are quite a number of vitamin and mineral deficiency than result in hair loss and thinning ... B12 is actually offered as a hair restorative on the internet - but I doubt it actually has any effect unless B12 was actually the reason for the hairloss in the first place.

Wowo23 profile image
Wowo23 in reply to Gambit62

Thanks Gambit62. I guess I just never thought what a huge role vitamins play in our overall health. Oh and thanks for a ive

Wowo23 profile image
Wowo23 in reply to Wowo23

Haha. Gambit62. It did it again and can not find the edit button.

Gambit62 profile image
Gambit62Administrator in reply to Wowo23

it may be different if you are using a phone but if you are using a browser there is a little down arrow next to the like button - click on that and you will see a set of options - one of which is to edit

Wowo23 profile image
Wowo23 in reply to Gambit62

Thanks Gambit62. Yes, using my phone. It just starting do this thing where it tries to send when I use an apostrophe

CH52 profile image
CH52 in reply to Wowo23

Hi Wowo23. I had extreme B12 deficiency and prior to treatment of blood transfusions, injections and iron infusions the hair at my temples was breaking off, thinning all over and turning white. After 8 months of treatments for my PA and iron deficiencies, my hair has completely grown back and the color at the temples grew back chestnut brown again ! I'm 65 and so have some gray's coming in but that is normal aging process. However, my hair is once again thick and very glossy and healthy looking. I had a similar issue with my fingernails. . Turned paper thin and ridged and now strong and healthy again.

Wowo23 profile image
Wowo23 in reply to CH52

Thank you for sharing CH52. I am so happy things turned around for you. It is important especially to women I think, to look pur best

Kate71 profile image
Kate71 in reply to CH52

I have thinning of the hair at the front, do you think now that I am b12 injections, that it might get thick again

Wowo23 profile image
Wowo23 in reply to Kate71

Hi Kate71. I think there is a good chance. I have had thinner hair just on top for years. It always bothered me. I could not believe it when I told my stylist that even tho I have thinner hair, she interrpted

Wowo23 profile image
Wowo23 in reply to Wowo23

Ugh. So sry. Something is messed up on my phone and keeps sending before I am finished. Anyway Kate71, she interrpted me saying "what do you mean, your hair is not thin" I looked closely and was so shocked. I have been celebrating ever since. I have been on injections for 6 mos now. Good luck and plz keep me posted

Marybrown06 profile image
Marybrown06 in reply to Wowo23

This is great news, congrats for your new nice hair!

Do you remember when exactly did your different symptoms disappeared during the last 6 months?

Wowo23 profile image
Wowo23 in reply to Marybrown06

Hi MaryBrown06. Thank you. I think the feeling off balance and my eyesight improved immediately after my first loading shots. Feeling shaky, heart flutters and brain fog about a month. I still have some Neuro symptoms like some tingling and ringing in my ear. I have noticed a big difference in my patience, my hair(of course), my skin and nails as well. It Was pretty rough for a while. Feeling much better

Aegir profile image
Aegir in reply to Wowo23

Amazing. What you have described is so similar to my own experience. I was in a right state. Had my block of injections in June, 12 weekly since, but the improvement is huge and my hair is thickening and coming back. Hope the improvements continue for you

Kate71 profile image
Kate71 in reply to Wowo23

Thank you will let you know x

clivealive profile image
clivealiveForum Support

Hi Wowo23 do you know what your Folate level is as this and the B12 you are having injected help your iron to make red blood cells.

What frequency of injections are you on and do you still suffer with neurological symptoms?

I can't say anything about your hair loss except to suggest you look at some of the "Related Posts" alongside your question.

I'm not a medically trained person but I've have had P.A. for forty-six years and still got a "mop" of hair at the age of 76. Hopefully yours will "grow back" in time.

I wish you well

Wowo23 profile image
Wowo23 in reply to clivealive

Hi clivealive. I don't remember what my folate level was. I just know b12 was very low, I was very anemic(still am a little) instrinic factor was very high, high MCH, MCV and found I have MTHFR gene mutation. I did daily b12 shots, then weekly until a week ago. I just now started trying daily b12 sublinguals 2500 mcg and shots every other week. I wanted to try this because I felt I was on a rollercoaster ride and needed something daily to keep me feeling level. My b12 level has been staying around 600(my orthopaedic oncologist likes this level). I had cancerous bone tumors, but they got them all when the amputated my right leg below the knee. I just found out my WBC is staying high normal and have an elevated lymp absolute. My primary is sending me to a hematologist/oncologist. Congrats on being a P.A. I'e

Wowo23 profile image
Wowo23 in reply to Wowo23

Ugh! There it went again. Seems to do that when I use an apostrophe. Anyway, clive alive, I have delt with some brilliant P.A.'s and most time feel they have a better grasp in their field

clivealive profile image
clivealiveForum Support in reply to Wowo23

It is important that your Folate level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Sleepybunny profile image
Sleepybunny

Hi,

How lovely that you got your hair back.

I was worried that I would eventually go bald because of the hair I was losing. Thankfully B12 treatment stopped the hair loss but overall hair is a lot thinner than it used to be.

Thyroid disease can lead to hair loss as well.

thyroiduk.org/

"Further testing proved PA"

Sources of info about PA and B12 deficiency

B12 books

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12; An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive book about B12 deficiency with lots of case studies.

PAS (Pernicious Anaemia Society)

Based in Wales, UK but has members from around the world.

pernicious-anaemia-society....

+44 (0)1656 769 717

PAS local support groups

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

I am not medically trained.

Wowo23 profile image
Wowo23 in reply to Sleepybunny

Thank you for all the info Sleepybunny. I am so glad b12 stopped your hair loss. It amazes me I did not realize sooner why my hair was thinning at such a young age then. It also amazes me the impact vitamins have on our overall health. I can only assume the symptoms of PA were so gradual but steady for so long, it became the norm for me. I can already tell a huge difference. It is kinda of weird starting to feel normal after so many years

topazrat profile image
topazrat

I lost a lot of hair years before diagnosis, but I was very anaemic at the time. With a course of iron, my hair came back, so I presumed it was caused by the anaemia, rather than the P.A., as I didn't start on B12 jabs for years afterwards and my hair didn't thin again in the meantime.

KimberinUS profile image
KimberinUS

Hi there,

I started getting grey hair at 27. I thought nothing of it. Over the decades, im 46 now, it was just more and more grey. Also started having receeding hair above my temples, as a woman, to the extent i rarely wore my hair in a ponytail by 37. Also have lost appox 1/3 of hair volume. I started injections in May 2017. I have had my hair highlighted every 10 weeks for the last decade simply due to the amount of grey. I now how fine hair that covers the area that had receeded and the amount of grey is way less, at least half of amount it was before. Of course i cant say this is from b12 injections as im also taking a multivitamin but am happy to not have to shell out money for highlighting when money is so tight. My eyebrows were also so fine and light colored i would have my hairdresser color them which never lasted very long. Now my eyebrows appear somewhat darker. Not alot, but enough that i dont feel the need to have them colored.

Wowo23 profile image
Wowo23 in reply to KimberinUS

Hi KimberinUS. Thank you so much for sharing. I am so happy for you

Gillsie54 profile image
Gillsie54

Hi

I too had hair loss and hair thinning and it stopped growing. Mine is still a bit thin but does grow now as do my nails. They are still ridgy but at least they are less brittle. I think when you get deficient all these peripheral things shut down as the body tries to save the essential systems.

Wowo23 profile image
Wowo23 in reply to Gillsie54

Hi Gillsie54. I am so glad you have improvements. It does feel good. I have been celebrating. I almost feel like I want to go out and show ppl my hair now. I was so excited last night and woke this morning rushing to the bathroom mirror(which is funny since I am an amputee, so rushing in a loose term) to check to make sure my hair is real 😊

Cath-britton profile image
Cath-britton

Congrats great news

Wowo23 profile image
Wowo23

Thank you Cath-britton. I am beyond thrilled😊

Kate71 profile image
Kate71

Haven never been told why I am getting injection b12

harleygal64 profile image
harleygal64

I am so glad that your hair has grown back! My hair started thinning over time and I thought it was hormonal initially. Then, I started with the other symptoms of PA and saw my GP and she drew blood and I was diagnosed. Also very low in folate. Now that I am on B12 and Folate, I am optimistic about my hair growing back. Reading your post has really encouraged me.

Wowo23 profile image
Wowo23 in reply to harleygal64

Thank you for your reply harleygal64. I had a thin area for many years. Like you, thought it was hormonal. I wasn't paying close attention to when it thickened up, but i have been taking shots about 6 mos now. Plz keep me posted

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