Hi ~ 66 yr old female, diagnosed Sept 2017 and I have been loosing hair since July. Eyebrows and eyelashes are going. :( I was at 1200 in Sept and am now down to 490 after weekly blood letting. Sigh. Discouraging to see the hair loss and I have no real answer.

Hello Loz83 and Cap6,

I have only just seen your posts.

My hair falls out all the time and has become very thin.

I see a trichologist every 3 weeks for scalp treatment and massage and this has slowed down the rate of shedding quite a lot.

The trichologist said that with such fine hair, as most people with HH have, the ends stick together and can cause pulling which means the hair may fall out more easily. She advised to keep my hair cut regularly to stop this as much as possible. I never used to bother because it grew so slowly but I find more regular cutting also helps with the hair loss.

When my hair annoys me at home I sit with a wet towel on my head - keeping it cool seems to help.

If it is really driving me mad I smother my scalp in olive oil or coconut oil, leave it on all night and wash it off the next day. This seems to slow the rate of shedding down a bit as well.

If I am not seeing anyone for a couple of days I leave the oil on for longer - but I do look a sight! However, that seems to slow the hair loss down quite a bit.

I have found a vitamin and mineral supplement which has no iron and I try and take it regularly but I mostly forget so I can't say whether it makes any difference.

Maybe you have by now found a solution.

All the best, Christine

Hi Pudding80 ~ I have been using an essential oil product since July but other than making me smell really good it hasn't helped with the hair loss. I do keep my hair short, cut every month and use highlights. My stylist has been great with a creative cut that helps with the thin sides..... but ..... sorry, this sucks. Really sucks. Don't mess with a woman's hair!

Cap6,

I had the menopause when I was 57 and I think this is when the HH symptoms began to show up. I was diagnosed when I was 60 and have been having treatment for a bit more than 3 years now.

It is hard to work out what belongs to post-menopause and what belongs to HH. However, throughout my life my hair has shed quickly - even when I was a child it always wound around the vacuum cleaner brush, my hair brush and around the shower plug hole and I always had to tie it back when cooking.

Around 1-2 weeks after a venesection I have awful pricking sensations in my scalp and a lot falls out at once. The trichologist says most of my hair follicles have one hair only - not 2 or 3 which would make my hair look much more dense.

I find it very distressing. I have found the tricholgist's support very comforting. She says the loss is over my whole head, no patches. I have been seeing her for a year in May of this year and my hair has never before grown so fast and new hairs are always growing.

I am still hoping to get to a stage where the rate of loss reduces, perhaps when I am on a steady maintenance regime. In the mean time I just have to do my best to help myself as much as I can.

Thanks Pudding! I am going to pursue this. Had never heard of a tricholgist before. Am also wondering about this entire thing.....
Long story as short as I can.......

I was diagnosed in 2010 with celiac and have been very strict gluten free since. Took about 3 years for my body to heal. Now the strange part...My iron back then was so low that they even talked about iron infusions! I was on very high dose of iron supps on and off for about 6 years. Went off everything in 2015 as felt pretty good. By this last summer (2017) that exhausted feeling was back and I thought iron was low again so went in to doctor to be tested. What a shock to find that it was high at 1271!

My menopause was at 45 due to surgery and at 67 still have those darn hot flashes every now and then!

It's all a puzzle!