EXTREME Hair Loss?????

KarolH;528409 said:

Hi Everyone,

Lately, probably the last 3+ months I have noticed that my hair has thinned all over my head and I know that a lot of us complain about this.

But, within the last 2 weeks the hair in my temple region has literally fallen out.

I am EXTREMELY CONCERNED and need to know if this is common or how many of you have had this happen as opposed to just thinning all over.

I think my balding is worse then my husbands now and I really don't know what to do. I was in tears this morning and I am NOT a vain person at all.

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I believe that dramatic hair loss at the temples can be a sign of low ferritin levels so it might be prudent to get this checked just to be sure.

Sage Hen;528428 said:

Hi Karol,

I really, lost a lot of hair, before getting on Cell Cept. It was especially bad, on my forehead and temples. You could look through it, and see my scalp.

I would have people talking to me..just stare at my hair. I felt like..saying, here I am..please look into my eyes..:

The short hairs are growing out now, but on top of my head, they stand straight up.. I have to put hairspray on them, and smooth them down.
My daughter in law..mentioned it to me the other day, and I had to tell her, it was my lupus hair growing out.

I am sooooo happy, to be able to say that. I have some hair again.

Maia, gave you some very good insights..Karol.

Best Wishes,
Sandy

Maia, gave you some good insights..

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Hi Sandy. I was wondering whether you can describe your hair loss? I haven't been diagnosed yet but mine is worse at my temples (had a ferritin level of 11 when it started so that didn't help) and my crown (actually have bald areas). My hair has generally thinned all over. I have spurts of regrowth, then I get a flare up of my 'rash' and it falls out again. Initially the loss was dramatic (came out in handfuls). Now it is just very brittle, slow growing and I have short hairs sticking up all over the place which aren't doing much. The derms are stumped because although my loss is severe they can't see a pattern which indicates any specific condition. My biopsy showed a bit of scarring but the remaining follicles were relatively healthy. I've been coping with this for 3 years now so can understand how you feel. Glad to hear that you have some new hair and feel a bit more positive.

KarolH;528456 said:

Thanks Aggie. On Monday my GI doctor will write a script to check nutrition levels per Maia advice so I will ask her to add it to the list. Interestingly enough my last ferritin level was slightly low so maybe now it is very low and that may be the answer.

Anyway, Thanks so much for all of the replies here. I just love you all!!!:wink2:

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During my journey on trying to find the cause of my hair loss I was told by a derm that for hair to stop shedding (beyond what is normal) ferritin levels need to be around 40 and for regrowth they need to be 70 -90. Obviously if there is another underlying cause running alongside (which I believe the case is for me) it won't be so cut and dry......excuse the pun!

Sage Hen;528463 said:

Hi Everyone,

There are shampoos, on the market to stimulate hair regrowth. They are a bit spendy..but, may be worth a try.

I did resort to buying a wig..It is quite pretty really, and cut in a nice style.

It was hot to wear in the summer..mos, but, I don't need to wear it now..I am happy, to report.

Aggie, my hair loss was basically, what you describe. All over thinning, but more severe on the top and temple area of my head.

Hope, this helps..

Love,
Sandy

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Thanks Sandy. I'm just getting so desperate not knowing the cause and wondering whether it will ever grow back. I'm due to see Dr D'Cruz next week so hopefully he will be able to help.