Skinny PCOS with substantial hair loss (amongst others) - help!

Women's health
1

Hi All,

 

Thank you for taking the time to read this. I've just signed up to this forum, on behalf of my girlfriend with PCOS. Don't worry, she knows I'm doing this - we're looking to get as much information as possible on the condition and what can be done about it.

Unlike (from what I have read) a good number of women with PCOS, my girlfriend has skinny PCOS. She is 27 years old but was diagnosed at about 21 years old.

She has a number of symptoms, but those that are causing serious problems are raised testosterone levels, leading to male pattern hair loss. It's getting quite bad and  we are really struggling to control this. The doctors are no help at all with responses such as "there's nothing you can do about this". I don't accept that - there's always something that can be done about everything.

What's making this difficult is that she is very underweight. While I know the BMI isn't the final word in healthy weight I do know it's a good starting guide. On this scale her BMI is 16 which is very underweight for someone who is 27 years old and 5'10"/178cm.

I am almost certain that her poor weight is a factor in her hair loss. Only recently through research did we find out that insulin issues lead to testosterone production. I felt the best thing to do was a low carb diet (wholegrain for the fibre, no processed carbs and no simple carbs) and gym exercise (little cardio, mostly weights to encourage muscle growth - the intention was to increase appetite and body mass). I think the low carb diet backfired - she lost another kilo and a half.

As a note, her diet in her late teens right up until a few months ago was terrible - high amount of simple carbs, starchy foods - which would likely have been a cause/factor in her PCOS in years gone by, but we only found out in the last two months just how bad this diet can be.

I would want her to pig out on food of all sorts but this is the issue - we expect that if she did it would be detrimental to her testosterone levels, but that won't help as her blood sugar would regularly be too high. I'm suggesting a medium carb diet now (mostly low carb with some simpler carbs thrown in during certain parts of the day. Now in reality, everyone like a treat - so one day a week she gets to eat (almost) anything she wants including a dessert - how much damage does this one day do? How long would you expect to recover from this once a week poor diet?

 

Please.. does anyone have input on this? I'm getting pretty desperate.. I just don't know what to do and my poor girlfriend, she's so fed up and out of options.

 

For further info, please see below on what I have her doing

 

. Diet (started about two months ago) consists of brown rice/wholewheat pasta with meats pre-dinner, and meats and veg at dinner

. Fresh vegetable (started one week ago) juice in the morning (kale, broccoli, celery, spinach, half apple, carrot, ginger) listed in order of largest percentage to smallest

. Daily Saw Palmetto capsule (started one month ago)

. Bi-Daily (started two weeks ago) Wellwoman Sport Vitamin tablet (nutritional support and has some DHT blocking ingredients)

. Daily (started just now) Green Tea Extract tablets (supposed to aid hair growth)

. Have suggested increasing complex carbs in the evening, including eating small meals/snacks as late as 10pm to encourage body to store this excess nutrients and add body mass

.  Emu oil (started one week ago) with essence oils of rosemary, ylang ylang, grapefruit, cedarwood, peppermint - I have now started massaging this as often can I can now, which would be every other day in the evening. The process takes about half an hour - oil and massage sections of her scalp until it is coated in oil, and then overall head massage once complete. The second massage is with her head over the side of the bed to increase blood to pool, and I start at the base of the skull and run my hands upwards towards her scalp. I am suggesting she wash out the oil the next morning:

. Nizoral Shampoo 1% Ketoconazole - I have suggest for deep washes to leave for 5 mins as the instructions suggest. For washes every other day to clear out the older oils I have suggested quick simple washes, no repeats, no 5 mins to work.

 

She was previously taking medication as suggested by her doctors - Yasmeen birth control and Spironolactone. This did bring testosterone down but her shedding hair did not stop. She's decided to come off of this medication (about 3 months back and decided to go herbal)

 

Of course, the above all makes sense to me, but I'm going into this new. In theory with the limited knowledge I have this all makes sense but. I dunno what I want to say next, I guess I am looking for suggestions

 

Does anyone have any suggestions on what we can do? I know I shouldn't expect instant results but I can't see her unhappy from losing her hair.

 

Thank you again for reading this, and look forward to hearing from you. If you need any further information please just ask..

 

Robert 

2

Hi,

Has your girlfriend checked her thyroid? Many women who have thyroid issues suffer from hair and weight loss if the thyroid is left unchecked. Also, many women who have PCOS also have thyroid problems. Ask your girlfriend to ask for a thyroid test from her GP.

3

Dear Pannseh,

It's great that your helping your girlfriend deal with the PCOS. Your support is crucial as PCOS symptoms (hair loss, unwanted hair etc.)makes us feel less of a woman.

I see that you tried most of the remedies I heard of. I don't have enough experience with them so I can't tell you if they work or not. The only thing I do now is that it takes a lot of time to see the difference.

Doctors consider my testosterone levels to be OK. They don't want to check the DHT, because it's not part of their procedure here in France (hopefully, the gynecologist I’m about to see today will beg to differ). I was reluctant to try any herbal remedies again before I do all the tests, since I want to have a clear picture of what’s going on.

My hair loss was “helped” by the problem with my thyroid – Hashimoto which caused hypothyroidism. Have they checked her T3, T4 and TSH? As soon as I was diagnosed and started taking hormone replacement therapy, I saw improvement. My hair is not as thick as it used to be, far from it. It is sufficiently healthy so that I can have long hair again.

I’ve noticed improvement when I introduced more protein into my diet – poultry and eggs. Unfortunately, as I can’t afford organic, it worsened my facial hair, so I gave it up.

Even before PCOS and Hashimoto were diagnosed (it’s hard to believe that there was a “life before”), I used to use olive oil for hair care and castor oil for scalp hair. I would massage castor oil on my scalp and then use olive oil on my hair and leave it for a few hours (sometimes overnight). It nourishes your hair but I don’t think that it works as a testosterone blocker. I sometimes do it and it really helps.

Be patient, something will work!

 p.s. I've just seen the reply from London Calling, we're think alike

 

 

 

4

Hi London Calling,

Thanks for your response i have had my thyroid checked recently after realising that this could be a major factor in my symptoms. The results came back fine which is a relief!

Thanks for your advice

5

Hi Masha,

Thanks for your response, my BF has been a great support to me and is always reading up new things to try. I'm really greatful to have him.

I didnt know DHT levels could be checked? Do let me know more when you get a chance. Yes its definitly best to have a clear system before your blood test so you work out what herbs etc you need to be taking.

Have you tried laser for your facial hair, Ive had a few treatments and although expensive its worth the money even if you have it every 6 weeks. Some places even do discounts for PCOS sufferers.

Meat can be very expensive but we have worked out that buying a whole organic / corn fed chicken can work out a lot cheaper as there will be a lot more meat in it. The down side is your have to cut it all up, i found that freezing it in pieces helps.

Take Care x

6

Dear Pannesh,

My endocrynologist here in Paris told me that there were doctors who check DHT, but that she wouldn't do it as it is not a part of their usual protocol. This gave me hope. At least I can try and find someone who will. 

The gynecologist I saw yesterday gave me a whole list of hormones I need to do, but for now he didn't mention DHT. I'll ask him as soon as I get my results. I have no doubt that the ones I did two month ago will be fine again. I don't know why he decided to check them again so soon, but I'm not complaining. The only thing nobody had ever checked is AMH - Anti-Müllerian hormone. Maybe it'll show something. as soon as I know more about it, I'll post it. Same goes for DHT.

 

Btw, he advised laser, just like you

I've trie dthem a few years ago, but apart from being expensive, they also burned my skin. I didn't have any scars or anything, but my face would stay swollen and red for a whole week.

Now, as my hirsutism got 100 x worse, I'm more motivated.

We'll try to fnd some farms in our region that sell organic chicken and see how it goes. I really need to keep my protein intake up and bad carbs down. Thanx for the advice!

Hang in there!

 

7

Hi,

Your doctor sounds good I have never had AMH tested. Oh no it burnt your skin thats terrible. Make sure you pick a good laser company in that case and ask them not to do it on too high. Also make sure you dont take the hair out of the skin by waxing its important you only trim it.

Farms sound great!

Ill be going to the doctor in about 2 weeks so i will make sure i get all the info i need about my last blood tests too.

TC x

8

Hello. I just read this post and I'm so happy to have found people going through the same exact thing I am. I'm now 37 and was diagnosed with PCOS at 16... I'm also on the thin side, but have to eat very helahty and workout often to stay that way... I have so much I can write about my hirsutism and hairliss and natural remedies vs. Medicine.... I have found that MD s have no clue about hiwbto handle PCOS and you have to take matters into your own hands and try all the herbal remedies. I'm just about to start saw palmetto myself as the hairloss has recently become horrendous and scary.... I wanted to tell you not to waste you lr money on laser! I have spent $16,000 in laser hair removal, having 2 sets of 10 sessions over a period of 8 years.... It looks amazing at first and you get all of your confidence back and over time it eventually all comes back... About 4 years after, it will all come back... Because it is not normal hairgriwth, like in legs or arms.. It's due to our hormonal DHT issue. I just dotn want anyone to get their hopes uonajd spend money they don't hBe, just to be let down... I'm starting saw palmetto or a daw palmetto formula tomorrow, with a topical home remedy of jojoba oil, rosenary, nettles , and also taking licorice root drops.... All supposedly are DHT blockers.... I'll keep everyone informed

9

Also an herb called Goats Rue is supposedly great... It's the main component of what Metformin is made out of, so it regulatesbyour blood sugar like Metformin... I started taking itva week ago and to nybsurprise, it has completely cut my appetite. I used to be hungry all of the time, although I eat healthy with low carb high protein and lots of veggies...im excited tonsee if this helps with the hairloss also...

10

Hi just wanted to see how the saw palmetto is working for you. I'm thinking about trying it. Thanks!

11

Hi i'm also curious about Saw Palmetto? How is going?