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Polycystic Ovary Syndrome (PCOS) Message Board
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Old 01-17-2006, 07:10 AM   #1
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Pipsal HB User
PCOS - 25yo severe hair thinning, sick of all of it

I was diagnosed with PCOS when I was 21 because of hair thinning. No cysts, did have irregular cycles, overweight - stacked it on from puberty, and a little excess body hair (arms mainly, but not too bad).

After several dermatologists who said ''hmm, it is thin isn't it....try Rogaine", my doc sent me to an Endocronologist as he suspected PCOS - he was right and I was put on Androcur, but after about a year I had to come off it as even though we were decreasing my dosage, my liver kept reacting to it.

My current meds are:
Aldactone/Spironolactone 100mg 2xday
Diane-35 BCP
Metformin 800 2xday
Iron/Folate supplement 2xday (and still can't get iron up after 18months)
B Vitamin mix
Nizoral shampoo

What else can I do? My hair is practically non-existant now - and I am 25 years old...my 80yr old grandmother has very thin hair, but mine is worse than hers!!! I have recently tried Nanogen/Toppik type coverups, but even they don't help that much because of the lack of hair left to cling to! I don't want to wear a wig, it would drive me crazy - hot/itchy and risk of coming off! I am practically a recluse now, go out to work or out with a family member with me and thats it - have gradually stopped keeping contact with friends (not planned, just happened), never had a boyfriend and not likely to, with not going anywhere alone, being bald and about 45kg overweight now.

The weight is, to my knowledge, the only thing left that I can do to try and help things - but I am also scared to loose too much weight for fear of loosing more hair! Viscious cycle. Although I admit I go through terrible eating patches, I feel like I am nearly always on a diet - have tried so many things but nothing seems to help long term and I have such a long way to go it is hard to maintain enthusiasm. I am also starting to be turned off by a lot of 'healthy' foods - meat for example (and I'm iron deficient!!!), if I can avoid it, I do - nothing to do with vegetarian etc, I just look at it and think yuck - same with a lot of things. I don't know what is going on.

Does anyone have any suggestions? I know this is just a big whine, but I am just sick of this - and my hair is shedding a lot at the moment (a lot is about 10 in the shower as opposed to none...u can notice a difference immediately it is that bad), soon I will have none left.

Thanks for reading this LONG post!
pipsal.

 
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Old 01-19-2006, 04:31 PM   #2
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15-08 HB User
Re: PCOS - 25yo severe hair thinning, sick of all of it

I am not surprised you are having a whine about this, it must be awful for you.
Have you got a good hairdresser who might be able to advise on hairstyles for you?
Failing that have you tried a wig, even if you think it will be awful You don`t know till you try. I work with ladies that have lost hair due to medical treatment, and many of thenm are delighted with their wigs.
The alternative is scarfs, or possibly hats you can get some quite trendy ones.
I know its not the same as your own hair, but hope i`m being of help.

 
Old 02-02-2006, 07:45 AM   #3
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Location: Massachusetts
Posts: 528
luckydarlin HB User
Re: PCOS - 25yo severe hair thinning, sick of all of it

I understand how devastating the thinning hair can be - it zaps your self confidence and leaves you feeling horrible about yourself. There are some medications that can promote hair growth (or so I've read) so it may be worth checking into more with your dr (either the dermotologist or the endo). I know you are saying you don't want to try a wig, but if a hair piece is no longer working for you, maybe you should give it a try. From what I hear, they are made MUCH better than they were years ago and they are comfortable. At least you would then feel secure enough to go out in public and live your life. I know it stinks and it's really lousy that it's happening to you, but don't just hide away because of it.

As for the weight - take your time and do what works for you. Hang in there - things will get better, and if they don't, try to make them better so you can be happy

I wish you all the best and sincerely hope things work out for you

 
Old 05-03-2006, 04:47 PM   #4
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Join Date: Jan 2005
Location: Phoenix, AZ
Posts: 675
schao HB User
Re: PCOS - 25yo severe hair thinning, sick of all of it

Pipsal,

Do you remember what blood tests the endo ran for you? I'm having terrible hair loss as well--I have for a long time and no doctor seems to care about it--so if I know what tests to order, I'll just order and pay for them myself.

Thanks!
schao

 
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