Alopecia

[Busybeegirl71]

Hi I'm a newbie to mums net, this is my first thread
:) .. I am suffering from severe hair loss atm and its
really starting to get me down now :( had tests at the gp
with no avail. Does anyone have ideas on what to do next.. considering a wig now as its got so bad. Would be
so grateful for any ideas or suggestions..

Hi Busy

You must be feel devestated (((hugs)))
My dsis lost her hair at 22 it came back when she was pregnant when she was 23 but lost it all not long after birth!
She lost all body hair, eye lashes, eyebrows etc.
She has her eye liner and eyebrows tatoo on so no need to shape in eyebrows every day. But has to glue on eyelashes daily.
She bought her wigs from Selfridges in London as they do real hair ones and very very real looking...go for similar colour to your haid now and style and people will not realise! They are expensive and last 6-12 months wash and dry aas normal hair.
She saw a tricologist and one type of alopecia is treated but the one my dsis has is not....it's autoinnune. My dad had it too but he never got it till 40 and easier for a man...it did grow back at 60 but white whispy/baby hair! My sister has a thyroid problem, so don't know if that effects it too? Maybe ask for thyroid test or to be seen by a tricologist and also an edocrinologist (thyroid and ask for other tests too)
I read only yesterday that gluten herpifomes (sp) can cause alopecia...avoiding gluten for 1yr would be worth a try! But get test done first before giving gluten up to see if it is the problem
HTH

Hi seaofyou
Thank you so much for your advice, your ds has had it tough poor thing. Makes you realise that people can really suffer a lot more than myself. The gp tested me for thyroid, anaemia, diabetes etc and it all came back all clear. I have thought about the gluten thing as i read ( and I read so much trying to work out the cause ) that celiac disease can cause hair loss and a I do bloat up after eating bread etc! I'm lucky as I do have a very understanding dh as it really has put me off going out now, making me the opposite of the person I used to be :( thanks for the selfridges tip i will check them out.. :)

Try this. I lost a lot of hair after having my children and this has saved my life. It is a coloured hair thickening spray and hides those little bald patches and makes your hair thicker looking. I was really self-conscious and it has made me feel a lot more confident.

Thanks Smarmy..I just had a look at your link on the thickening spray. It looks brilliant and definitely something I will consider using once my bald patches show some reasonable growth. The problem is almost 50% of my hair is missing..patches are 2/3 inches wide and long. They are mainly on the top of my head and the sides so getting to the point now I don't have enough hair to cover the various patches which means I can't disguise them at all :( .. Ive never been one to colour my hair, use straighteners ( hardly at all) so keep thinking why is this happening to me?? I used to thick gorgeous hair even if I do say so :D now I'm down to thin wispy straggles with big kinks in what I do have left :( :(

This happened to me about 3 years ago. I can't write a long post now as I am using my phone at work, but will come back later and expand. Mine all came back within a year and you would never know now, but it was extremely distressing.

I've had alopecia since I was 14, am now 53, currently sporting a very thick, more or less (bald patches can't be seen) full head of hair. I have had bugger all, and loads of hair. I'm so sorry, but the conclusion I have come to is that I just have to live with it. I have hats and scarves. There are advantages, I never have to shave my legs or under my arms!

Does the thickening spray come off when you sweat? Like at the gym?

There seems to be a lot of people who have had good results with autoimmune problems when on a strict paleo diet. Including alopecia. This does include cutting out all grains, so if you want a definitive answer on whether you have coeliac or not, you would need to get tested first. Even if a blood test comes back negative, it would still be worth trying it for a couple of months. The autoimmune protocol for paleo also includes eliminating eggs and nightshades I think.

herbwoman, whats the paleo diet?

Hi can I ask what was your iron or ferritin level when you had your blood tests? Anything over 10 a gp will tell you is OK because its not considered anaemic. Actually your level should be 70 for optimal hair growth. My dds level was 15 and was suffering from diffused alopecia on the side and top of her head. The gp said this was OK! I demanded a referral to a dermatologist who told us the above info. Its taken a year to get her levels up to 69, but within a few months her hair had started sprouting. Good luck.

Hi Torrelou..I had a blood test done for my iron levels and gp told me they were fine. I have no idea what my level was as he never told me. Having read your advice it has now made me re think things. I will book another gp app and go from there. I have little faith in my gp as it feels like if he can't treat it with antibiotics than sorry he can't help. :-( he has prescribed me Some lotion that seems to do naff all which is why I'm now I am in a bit of despair now .. I try to keep up beat but feel like I'm literally going to have a comb over soon thanks all your guys for all your advice..it really means a lot :)

Sorry, meant to come back earlier. My GP didn't do blood tests as mine was very obvious distinct patches, as opposed to general thinning and was alopecia areata. Mine started with a 2inch patch at the back of my head which my hairdresser noticed. I was referred to a dermatologist (I had to go private though) he was very helpful and prescribed steroid ointment (gel, called Synalar), also put me on his NHS list so I only had to go private for the first visit. I was prescribed wigs on the NHS if I needed them and referred to a wig shop for this. The lady there was very helpful, I did get my NHS wig and although that sounds a bit grim it was actually a pretty decent wig.

Over about 6 months I lost about a third of my head hair in distinct patches, mostly at the back luckily, although there were a few patches on top. I have very dark hair and I was very self conscious and distressed. The lady in the wig shop got me some camouflage cream, called Couvre, which was the same colour as my hair and a bit like shoe polish. You put it on the scalp and then comb or pin hair over it, it made a huge difference to my confidence. It was reasonably waterproof, you could wash it off with shampoo, but no worries about getting caught in a shower of rain. I never actually wore the wig, but have kept it just in case.

Anyway, after about 6 months, some of the hair started growing back as very fine white down, which after a few weeks turned darker. Although I was still losing hair in other patches, the rate of loss slowed down and gradually it all came back again. It took about a year for all the patches to start filling in. I haven't had any further episodes, although I know it could happen. I am convinced mine was down to stress, I had had an extremely stressful incident at work a few weeks before it all began. The dermatologist was inclined to agree.

My first post on MN was about this subject as well. I would definitely go back to your GP and push for a referral to dermatology, also ask for your exact blood test results. It isn't just a cosmetic problem, it is a medical issue and the distress it causes cannot be underestimated. Good luck!

Have you tried minoxidil?

I have suffered from this too. Mine was due to stress, bought opon by DP leaving me for someone else, loosing my house etc.. and was compounded my the pill. I came straight off the pill and tried to get myself some support and within about a year most of it had grown back. I have a tiny patch that still flares up from time to time but it is hardly noticeable (although I obviously see it every time I glance in the mirror.)

I agree with the lady who said she had had it all her life hats, scarves, alice bands etc can all be used to disguise it - I have become - the lady with all the gorgeous hats and really no-one notices it. I mentioned it to someone the other day and she was surprised and when I showed her my patch she claimed she had never noticed it.

I have a friend who runs a store in Bristol who specialise in wigs for this and other hair-loss suffers. They get lots of NHS referrals and like other such places are adept at finding you what you need if you decide on a wig to make you feel like you again.

Try not to stress about it (I know it is easy to say) but remember it is a whole lot more noticeable to you than to anyone else.

Sunny It's based on what humans would have eated before agriculture really developed, so eliminates grains, legumes, sugar, potatoes (although some still eat potatoes). I know several people who eat this way who have not only lost weight but have also benefitted in other ways - one has rheumatoid arthritis (also autoimmune) and her pain levels are much better, another no longer has to take pain medication for a hernia (except when he visits family and eats wheat there). Try googling Robb Wolf (paleo) or Mark Sissons (primal blueprint).

Hi all thank you so much for all your ideas and words of wisdom, it really has meant a lot that you girls have taken the time to offer support and advice to me. I really am appreciative and take comfort knowing I'm not the only one who is and has been through this. I have looked at minoxidil on the net but am holding off trying it as it something you have to keep up indefinitely, so I would rather try to get to the root of the problem and why it's happened. Thank you whoKnowswhere, your situation sounds very similar to mine as what you describe as your patches .. I'm defo going bk to gp and insist on referral as he's fobbed me off twice now and not going to let him do it again ! I have just bought myself a wig on line which almost replicates my original hair as I have a couple of social things to go to and couldn't face going with the gaps as they are now! So hoping it looks ok..I'm very lucky as I have a very supportive Dh and great friends that reposition my hair if gaps shows but now beyond that stage. Going to try what the lovely herb woman suggested and cut grains out for a few weeks and see what happens.. Will to try most things now ..fingers crossed something works.. I wouldn't mind but I still have to shave my legs and pluck my eyebrows and other unmentionables