Scalp biopsy advice needed: Hi everyone, I was... - Alopecia UK

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Scalp biopsy advice needed

Stokes9 profile image
9 Replies

Hi everyone,

I was told on Monday that I have androgenic alopecia. Devastating at any age and definitely not something I thought I'd be dealing with at 33. I've been offered a scalp biopsy to be sure and I was wondering if anyone has had one. If so, could you let me know where they take the hair from? I don't want it taken from my thinning bits. I know it would only be a small bit taken away but every hair counts!!

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Stokes9
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9 Replies
deejames profile image
deejames

Sorry to hear you are having to go through this. I remember the sense of disbelief. I had one and it was a tiny scrape , just a few cells really. It didn't even need a plaster.

You will find help and support here and there is also a Facebook page that has a lot of members.

Dee

Stokes9 profile image
Stokes9 in reply to deejames

Thank you for the reply. That makes me feel a little better. Did they just take it from one part of your scalp? I've read that they take it from two or three. I was so devastated when I saw the specialist that I feel like I walked away not asking all of the things that I should have.

deejames profile image
deejames in reply to Stokes9

I think it was a couple of places . I have frontal fibrosis alopecea which is a scarring alopecea but I have it controlled by (admittedly) heavy medication.

Make a list of questions for when you go back and if you can take someone for support. Be aware that there doesn't seem a consistent pattern for alopecea and they won't be able to say exactly how you will respond. Do go onto the Facebook page or there is another world wide alopecea forum. Do a search. It's important that you don't exist in isolation. AND very important don't listen to the stories people will tell you about their brother's aunties' friend whose hair all grew back in, or the butcher's mother who as completely bald. None of them are you. There are a lot of myths going about. And lots of different alopeceas . Speak to the people who know on the forums.

Chin up

Dee

Stokes9 profile image
Stokes9 in reply to deejames

I see. The dermatologist was very much like "you can have one if it puts your mind at ease", which makes me wonder if it will be worth it or not. I don't feel like any of the doctors I've seen have been particularly supportive or understanding.

I will join the facebook page. I do feel very isolated. I've only told my mum and sister about this and they just say that it's not that noticeable yet but I know it's going to get worse. Like most people I expect, I've done a lot of googling and yes there certainly seem to be a lot of myths out there and a lot of people/companies trying to cash in on people's desperation. Like you say, it's probably best to stick to the facebook page and people who know!

Thank you for your help

Lindsey

deejames profile image
deejames

Hi Lindsey. My daughter, who is 42 , has androgenic alopecea. It is way back on her forehead now and she has thinning g hair on the scalp. It causes her quite a bit of distress but like you did not get much empathy from the dermatologist. She wears a scarf a lot and hats and has a wig for special times but just has her hair very short for work.

I go diagnosed first and my loss has been much less than hers but I have taken all these medications which are not good for me overall.

You have a right to ask for a second opinion but I believe that Regaine shampoo is the only treatment. Be aware though that once you start using it you have to keep on for ever as when you stop the hair falls out anyway. My daughter decided not to as it's expensive.

I do think for you you need support. The only people who know what feelings it generates are those who have it so contact the forums and you might get ideas about good diet etc that might help.

Message me anytime if you are feeling in dispair or have questions.

Dee

Stokes9 profile image
Stokes9

Thank you Dee, I really do appreciate it. One doctor mentioned Regaine to me but that was before I even had all the blood tests done and he didn't seem to know much about it. I think eventually I might try it but as you say it's a lifetime commitment, so I'm not sure.

Did your daughter have a scalp biopsy (sorry to harp on about the scalp biopsy) or was it just a case of ruling everything else out through blood tests? I think I might get a few scarves, even though I don't need them quite yet. I think maybe slowly getting used to them will help.

Thanks again for your messages. It certainly helps speaking to others who understand.

Lindsey

harshkjain19 profile image
harshkjain19

Hi! I am 21 Now and I was said that I have androgenetic alopecia about 2 years ago (that's right! at the age of 19) it was a very stressful time for me as I didn't know what to do. I faced with huge hair loss (lost hair from temples and from the top in 5-6 months). but I started using Minoxidil solution and now its all stable although I face shedding every 6 months. but it's alright now as I'm used to it!

Stokes9 profile image
Stokes9 in reply to harshkjain19

Gosh, at 19! I think mine began in my early twenties but rather than loads falling out it has gradually thinned and now more noticeable. So, Minoxidil has worked well for you? I've been hesitant to start using it, although will probably have to. Did you lose lots of hair when you started using it? I've heard it initially causes more shedding. Did it grow hair back?

harshkjain19 profile image
harshkjain19 in reply to Stokes9

Yeah it was to embarrassing for me to walk around with my friends and finally i visited my dermatologist and he suggested me minoxidil. Yes, it worked for me. When i first started using it, my hairloss continued for 4 months and meanwhile i could see that new hair was growing! Gradually hairloss reduced and I've got good amount of hair. Its a great medication but be sure before you start as its a life long commitment. Also keep in your mind that your hair will never be the same as it was before your hairloss. Overall a great product! Hope this helps

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