Pernicious Anaemia Society

Hair loss is getting worse 😔

Could anyone reasure me that my hair will stop falling out... I've now lost half the volume of the thickness... Is there anything I can do.. I was diagnosed with PA last July and staring to feel better.. Self injecting every week... I don't know what to do about the hair loss.. It's making me very anxious.. Any advice would be much appreciated ☺

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Hi,

I hope you find an answer to your hair loss. I had some hair loss eg eyebrows, eyelashes, head and elsewhere but not to degree you describe. Hair loss stopped after several months of B12 treatment but remains sparser than it used to be.

Have you got good levels of iron and folate?

Have you had Vitamin D levels checked?

I believe hormone fluctuations may influence hair loss so a woman may lose more hair when she enters menopausal phase of life.

Stress can increase hair loss too. I hope you have some stress relieving activities in your life.

I am not medically trained.

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Thanks sleepy bunny... Yeah I have 400 folate in a multi vitamin a day.and iron.. . I'm already on vitamin D for Pagets disease.. I've only been on the shots for 7 months, so maybe it's not long enough yet.. Plus I've been loosing hair long before I was diagnosed... So fingers crossed...just wanted to ask you something.. I've just this minute had a jab and for the first time every my vision went out of focus almost crossed.. Have you heard of that happening?... Scared the life out of me.. Still feeling a bit shaky 😔...

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Yes, after a while of daily jabs my vision went haywire and I suspected magnesium shortage.

When I supplemented by taking a little magnesium sulphate (Epsom Salts, a constipation remidy, readily available from pharmacies) it improved. A safer and less laxative way to get it is to dissolve some in a bath and soak in it or spray it on you as it is readily absorbed through your skin.

Since then I have managed to get magnesium chloride crystals and take a small amount daily to maintain my levels. I always aim to take a minimum amount so that I don't risk a dangerous overdose and sometimes my eyesight goes wonky again. So far it has always gone back to normal when I increase my magnesium intake.

I think (my memory didn't work when I was very B12 deficient) it took about a year of daily jabs before my hair stopped falling out and it was 16 months before I noticed it growing back. It is probably nearly twice as thick now as it was at its thinnest. I had deficiency symptoms for so long (20+ years) I don't ever remember it being anything other than thin!!

As the extra B12 starts your body working again lots of other resources can be used up to repair the damage sustained when you were deficient.

You may benefit from a broad spectrum multivitamin and mineral supplement plus extra folate, potassium, magnesium and maybe iron.

I suggest you Google these to see what deficiency and excess symptoms are and what foods are rich in these.

I hope it all improves for you soon.

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Hi,

Not had the experience of vision going out of focus. Hope you're okay now and that doctors are going to investigate.

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Just to add that if I get short of potassium or folate I become anxious and can feel my outlook is bleak.

If I increase my levels of these to stop the deficiency symptoms my anxiety also goes.

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Thanks for that ☺... I've been si every other day for the last 8 months.. So there's hope 😊... You said your vision went haywire what were your symptoms???... I've just had a similar experience.. But the doc said I might have had a mini stroke 😔... Just waiting to find out.... Thanks again for the reply ☺

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It's hard to remember because my cognitive function and memory often goes too but I can't focus or see straight.

Good luck!

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Thanks ☺

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I get that sometimes as well, I thought it was my anxiety

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I hope you find the answer soon hair loss is so stressful. I too lost ALOT of my hair but i think for me it was multiple deficiencies they even just told me now i have scurvy too. Ah the life of a celiac.... i definitely agree with everyone that maybe you need other nutrients to get bumped up thast was definitely the answer for me. My hair has now started to get thick again so it definitely can get better😃

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Thanks for your kind reply ☺... Yeah I had a long chat with the girl at Holland and barrett.. She was very knowledgeable... It's early days.. But I think I'm on the right track according to you guys and gals on this forum ☺.. All the best for the future ☺

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I had sever hair loss over 18 months my mega thick mane of long hair is now and sparse bob masked with extensions!

I take the following supplements to aid hair growth:

2 x HSC Head High amino acid

2 x evening primrose

1 x B-Complex

1 x folic acid

2 x collagen supplements

1 x vitamin D3

Since taking them my hair has grown significantly and my hairdresser has said it’s new hair thickness at the roots

Hope this helps

X

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Thank you so much for your advice ☺... I'll try the primrose and collagen supplements..I'm taking everything else 😊... All the best for the future ☺

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Hello Frances55

I have have issues with B12 since I was a young teenager. My doctors either didn’t know or didn’t share the seriousness of the issue so for the next forty some years I only took supplements when I had a sore tongue or my lips cracked. After years of not enough B12 I had very serious symptoms which I won’t go into. But after reading this forum I started doing every other day injections and slowly began to feel better. A bonus I wasn’t expecting was my formally 98% gray hair started growing in my normal almost black color. I was showing this to my daughter and granddaughter and they both said it’s also a lot thicker. I hadn’t noticed it had thinned. So hang in there it can happen. I take a B12 shot at least twice a week, 5000 units of D3, a multi vitamin, folic acid 400 units daily and for good measure I take an iron tablet once a week.

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