Pernicious Anaemia Society
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HAIR LOSS!!!!!!!!!

Morning all ☺... My hair is still falling out after 6 months of every other day si... Has anyone else experienced this?... Has anyone lost all thier hair?... Does it take time to stop falling out?... I'm fortunate to have a lot of hair to start with... But that won't last long at this rate.... Hope you guys are all doing well ☺... Any replies will be extremely appreciated ☺

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I also have the same problem and have had it for about 2 years. I have five weekly injections at my surgery and also my husband does a "top up" if I feel it necessary.

When it first started I went to a trichologist and she advised me that my iron levels were seriously low and that to even encourage hair growth serum ferritin needed to be above 90. I bought ferrous fumerate tablets from the chemist (just the non branded ones) and took two every day for about a year.

I've just had another blood test for something unrelated and because of my extremely cold hands (!) my doctor asked for a full blood screen which showed that my serum ferritin was now at 197. I no longer take the tablets.

Whilst my hair is in very good condition I still get significant falls and it is most distressing, so I can empathise with you. It might perhaps be a good idea to see what your serum ferritin is and that might help. There are other posts on this site relating to this and it might be helpful to read them as it seems to be important to make sure that other things are in balance (seems to be trial and error) to slow down the hair loss.

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Thanks so much for your reply ☺... I've just had my bloods done and all is as it should be.... I've had the hair loss before I was diagnosed with PA..I just thought it would get better after the amount of B12 I've had... I'll see if I can find the other posts... Thanks again and all the best for the future ☺

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I had thinning before B12 diagnosis but my hair was falling out in handfuls when I finally got diagnosed. I don't think the injections have made much difference, to be honest. I think the serum ferritin has slowed the hair loss down. Have you got a copy of your blood tests that show that your serum ferritin is above 90? More than one post on this site show people being in range (according to their GP) but they then find they need to inject more frequently or take further supplements. I'm hoping that my hair loss will continue to slow and be replaced, but have seen some web comments that say it can take up to 5 years for telegen effluvium (the diagnosis I had from the trichologist) to clear up. I do hope that you find something that works for you and that it doesn't take that long for either of us!

Regards.

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Have you had thyroid checked?

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When i hear Hair loss i think iron, zinc and/or protein.

Protein is needed for thyroid to work properly along with iron, b12, zinc and numerous other nutrients.

I think Optimum level for total protein is 7.1 to 7.4. It is on my regular testing along with glucose ect.

If that is optimal, and your iron is fine and you are getting b12 injectuons you might consider zinc which i have never had a test for but suppliment 15 daily.

My hair loss has gone from causing the water to back up during a shower, to next to no hair loss. I have been having b12 injections since May 2017.

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Frances55 - have you also been tested for autoimmune hypothyroidism - or hypothyroidism - symptoms very similar to B12 deficiency and include hair loss.

40% of people with PA go on to develop hashimotos (auto-immune hypothyroidism)

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Hi,

Thyroid UK website mentions hair loss as a symptom of hypothyroidism.

thyroiduk.org/tuk/about_the...

There is a very active Thyroid UK forum on HU so may be worth putting any thyroid results on there.

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I had a free T4 done in December result was 12.3...range (9.0-21.0)... And TSH was 1.69 range (0.35-5.00).....does that seem OK??.... Might have to go back to the doctor 😷... Thanks guys ☺

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