Vera

[Adriennne]

Used to have lovely thick hair until recently due pernicious anemia I think finding hard to deal with must accept change any advice

[Lisahelen]

Think lots of us ladies find this a hard knock, but for me personally, mine started to thicken up once i was being treated. Firstly by gp injections then using otc b12 products. But it is a slow progress not an overnight magic regrowth unfortunately.

[Adriennne in reply to Lisahelen]

Thanks for reply feeling a bit fed up

[Rudders]

I started loosing my hair in my mid 30s which I now know 5 years later was the first signs of my b2 condition. I lost at least half the thickness I had but since I have been on regular injections which is only a few months now, I have noticed much less is coming out. so as lisahelen says it will hopefully get better in the longer term

[Gambit62 Administrator]

Like others this is one symptom that I would say has certainly been resolved by treatment, so it should start to thicken up. It is likely to be more obvious if your hair is short rather than long so give it a few months and then treat yourself to a new hairstyle.

I had thinning hair for at least 15 years before I got a diagnosis of B12 deficiency so had sort of learnt to live with it - though it did make me feel old (along with all the early greying I inherited - along with PA? - from myfather'ssideofthe family. I found that using hair gel helped me to get a bit more volume in to my hair - so something to think about in the mean time.

[Adriennne]

Trouble is i am vain when it affects my hair. Just have to hope for the best thanks for reply

[Hidden]

speaking as a bloke, I had a big bald patch on the back of my head which I just thought, oh going bald, but when I started B12 injections it all grew back, I'm still bald but now just normal bloke bald if that makes sense, not random bald patch bald.

[Adriennne]

How long have you been receiving b12 injections

[Lisahelen in reply to Adriennne]

Me, i had 7 loading then one 3 monthly but i use otc ptoducts as i know for me the injections i have arent enough to 'cure' me. First diagnosed august last year but had hair loss for at least 3 years before that.

So on my experience recovery is quite quick, it started to thicken but its the time it takes for the hair to grow to an acceptable length which takes the time.

[Sleepybunny]

Have you ever had thyroid tests?

One of the symptoms of thyroid problems is thinning hair/hair loss.

Having one auto-immune problem egPA increases the chances of having another one.

there are quite a few people on this forum and the Thyroid forum who have both thyroid problems and B12 deficiency.

thyroiduk.org.uk/tuk/

When I started to take B12 my hairloss stopped.

[Adriennne]

Hi have and still receiving thyroid treatment recent test shown satisfactory thanks for advice at first had 5 injections within 2 weeks tiredness disapeared bald batch still very evident next injection in a few days time last injection November cheers

[sueeaton]

I have experienced hair loss - quite significantly last year and it has begun again this year, although at a reduced rate. I have no doubt that the B12 deficiency plays a part in this, but was also advised by a trichologist to have Vitamin D and serum ferritin checked. Apparently although my serum ferritin results were classed as "normal" they did not meet the NHS guidelines for hair regrowth! The trichologist said that for optimum growth levels should be over 100ug/L. Since taking extra iron tablets daily my serum ferritin increased by 13ug/l over 6 months so I think it will be a very slow process.

It is very upsetting to loose one's hair (I also went grey at an early age as Gambit62 mentions) and I can sympathise - perhaps you could check to see whether your Vit D and serum ferritin levels were also tested? It is rather a vicious circle because stress can cause hair loss - and losing hair is stressful.

My GP is very supportive and I am due to have another blood test for serum ferritin next week so I am keeping my fingers crossed for an improvement.

[clivealive Forum Support]

I'm 75 and still have a great mop of hair - can I "blame" that on the fact that I've been having b12 shots every month for the past 44 years???

Have we unwittingly found a cure for baldness???

I wish I knew how to put a photo on here to show you....

[Adriennne]

Hi happy for you as I am new to this can you tell me why do you have b12 every month is their a reason for this as my sister has been on b12 injections for years (no hair loss) gets injections 3 monthly cheers

[Laura5 in reply to Adriennne]

Adrienne - for Clive to get a notification that someone has replied to him and see your message, you need to press the reply button under his post.

[plug]

Request a thyroid function test. My thyroid is under active and i shed lots of hair before starting on Levo-thyroxine, soon grew back when on correct dose, takes a bit of tweaking at first. Also have P/A the two conditions are more likely occur if you have one or other of them. Hopefully this may help you feel better.

[Adriennne in reply to plug]

Thanks for advice cheers

[Sleepybunny]

Hi Adrienne,

Are you UK based?

" had 5 injections within 2 weeks tiredness disapeared bald batch still very evident next injection in a few days time last injection November"

"as my sister has been on b12 injections for years (no hair loss) gets injections 3 monthly "

Do either you or your sister have any neurological symptoms? See symptoms lists below.

b12deficiency.info/signs-an...

pernicious-anaemia-society....

Symptoms Checklist in here. I ticked all my symptoms and gave a list to my GP.

The UK treatment for those with B12 deficiency with neurological symptoms is more intensive than you are receiving. You and your sister appear to be on the standard treatment for B12 deficiency without neuro symptoms.

Info on treatment for patients who are B12 deficient, with and without neurological symptoms can be found in ....

1) BNF (British National formulary) Chapter 9 Section 1.2

All UK GPs will have access to the BNF.

2) BCSH Cobalamin and Folate Guidelines

This link has similar info to the BNF.

patient.info/doctor/pernici...

I'm surprised that you only had 5 loading doses as I think the BNF and BCSH Cobalamin guidelines mention 6 loading doses and more than this if you have neuro symptoms. It's possible if you are UK based that the GP is following local NHS B12 Deficiency management guidelines.

These local guidelines vary across the UK. Some of the local guidelines have not been updated since the BCSH Cobalamin guidelines came out in 2014. Some GPs may not have read the BCSH Cobalamin guidelines. I copied the whole document and gave it to my GPs to make sure they had seen it.

These local NHS B12 Deficiency Management Guidelines might be found by an internet search, a search on local NHS website or a FOI (Freedom of Information) request to local NHS website.

I was told that the NHS should be following the BCSH Cobalamin Guidelines. Your local CCG (Clinical Commisioning Group) if you are in England might be able to tell you if the BCSH Cobalamin guidelines are being followed in your area.

nhs.uk/servicedirectories/p...

Useful websites

pernicious-anaemia-society....

01656 769 717

office open everyday except Sundays

b12d.org/

b12deficiency.info/

martynhooper.com/

Useful books

Could It Be B12 by Sally Pacholok and JJ. Stuart

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