I dont where to start from... PCOS has demotivated me

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simply_healthy
simply_healthy Posts: 175 Member
in Health and Weight Loss
Hi all,

I am returning to this website after almost 4 months. I have been really troubled. Had surgery and couldnt work out for long as I was on bed rest... I have gained all the weight back. I went through horrible times in my personal life too and doctors feel that I am slipping into depression.

I am very very worried about my hair loss due to PCOS..Nothing is working for me.. Tried minoxidil, biotin supplements... My blood results are fine.. The doctor says "she has no clues why I am having hair loss"... That answer broke me... :( I have lost so much hair already. I feel very demotivated. I dont know where should I start from !

I have lost all the motivation and am sleepless at nights and I stay up till wee hours... I dont know how to set things right.

Cheers,
SKB

Replies

  • AnnaPixie
    AnnaPixie Posts: 7,439 Member
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    I think you need another Doctor!!

    You need help with your depression first. And then your PCOS. There are drugs you can take for both.

    Hair loss could be due to stressing over all these things!!

    I feel for you, but the only 2 answers I have are to get proper professional help. And in the mean time try and exercise again. Exercise is good for depression AND weight loss; it just makes you feel better. Even if you start by going for a walk.

    Good luck

    :flowerforyou:
  • shannon11kosa
    shannon11kosa Posts: 5
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    I am a hairdresser. So let me tell you, any kind of stress to your body, major life change, or medication will make you lose hair. Hormonal changes is a big one too. You will get your hair back...I promise. It takes a month for your hair to grow half an inch, so be patient. Make yourself happy! Everything good takes time. Even hair growth ;)
  • cramernh
    cramernh Posts: 3,335 Member
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    Did you see your PCP? Or a Dermatologist? If it was the PCP, you definitely need to stop seeing him/her for your hair-loss issues... See a Dermatologist... he/she will order some blood work to check your testosterone/estrogen/androgen levels, your insulin levels, etc, etc. Male-pattern hair loss IS treatable.... Its a slow regrowth process, but it IS treatable! Normally spironolactone is the drug often prescribed.....

    Start with talking with your insurance - ask them for physicians and specialists on their list that specialize with PCOS... Thats the first thing.

    Second thing - hair-related belongs with Dermatology and/or Endocrinology. They are both just as medically influencial.

    For the PCOS, make sure you work with an Endocrinologist if you are not trying to conceive.

    We have a team of Endocrinologists where I work who collaborate between two major healthcare networks. All are very well versed with PCOS treatments and the sub-treatments that go along with it.

    I will tell you first - hand: the number one recommendation for PCOS patients to do is to follow a lower carb intake, a significant reduction in refined carbs *(in some of my patient's cases, total elimination due to severity).

    Make sure you also ask your insurance if they have any Registered Dieticians on board who are specialized in low-carb intakes/Diabetes management. The treatment is one in the same when its dietary controlled.

    I would like to extend an invitation to a group I help moderate called "Low Carber Daily Forum".... we have MANY women there (including myself and some pts as well) who are PCOS and are following a LC intake.

    You are definitely NOT alone and will help you get through this in a more manageable direction of support!!!!!!

    Let me know if you have any questions pertaining to how to get the right info from your insurance.... I battle them for a living and absolutely LOVE it! LOL!!!!!
  • cartmail
    cartmail Posts: 36 Member
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    I know it's hard but stay positive. There's plenty of great wigs out there if it comes to it and you could have a funky new look every day. Exercising might also help with your depression. Chin up and keep talking about it that can be a good a medicine as any!
  • simply_healthy
    simply_healthy Posts: 175 Member
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    I have been working with the Endocrinologist and Dermatologist from NHS for most than a year now. The endo said that she cant put me on spironolactone because that would mean that I have to take contraceptives too and she feels that there is a risk of cloating in lungs etc due to contraceptives as my BMI is more than 25. So she is hell bent on not prescribing spironolactone. Also, my menstrual cycles are fairly regular (With a delay of 5-6 days).

    The dermatologist is not helping either... They say that NHS doesnt cover for hair loss treatments and I need to go to private clinic if I want to get minoxidil n other stuff. I did try to use minoxidil 5% for more than 6 months but unfortunately it didnt help.

    I agree, I need a better doctor but dont know how to get them... as I am restricted to NHS!
  • simply_healthy
    simply_healthy Posts: 175 Member
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    I am a hairdresser. So let me tell you, any kind of stress to your body, major life change, or medication will make you lose hair. Hormonal changes is a big one too. You will get your hair back...I promise. It takes a month for your hair to grow half an inch, so be patient. Make yourself happy! Everything good takes time. Even hair growth ;)

    Unfortunately, My hair grows by 2-3 inches in 6 to 8 months. I have extremely slow hair growth and also I am losing hair and as per my doctor the follicles are dead !!! Its a male pattern baldness ! I am so scared of whats gonna happen..

    I am losing confidence and dont like to step out of the house anymore. I have started working from home and I hardly go out.. Unfortunately, I dont even have any friends around.. so its like staying all alone for the entire day, working from home and stepping out only for groceries.

    I have never been a loner... but now I am !! Due to all these issues, I am losing myself !
  • yarwell
    yarwell Posts: 10,477 Member
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    Are you getting your proteins and a good range of fats and oils in your diet ? There could be some trace element or similar issue that hasn't been picked up.
  • misscristie
    misscristie Posts: 643 Member
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    Can you afford a private doctor - not through NHS? I'd go that route if you can.

    I really have no input other than that, but I'm so very, very sorry you're having to go through this. :(
  • Melroxsox
    Melroxsox Posts: 1,040 Member
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    up ur protein, lower your carbs, take pcos friendly supplements( including b vitamins and Biotin which is specific for hair/nail growth) , drink lots of water, and exercise regularly at least 45 mins a day.
    been suffering with pcos for almost 3 years now....its so hard. I feel for you. there are also support groups in the forums too! good luck:)
  • castadiva
    castadiva Posts: 2,016 Member
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    Sounds like you may need to see a different endocrinologist. Most are happy to prescribe contraceptives of the PCOS-fighting type up to a BMI of 30. 25 sounds unreasonably low, and the increased risk of blood clots etc are very, very low in the 'overweight' BMI categories unless you are significantly obese. My sympathies - I know how unhelpful some doctors can be with this, particularly in the UK where PCOS is still not well understood or treated.

    My understanding is that you can request a referral to a different endo. through your GP if you are unhappy with the treatment being provided or don't feel comfortable with the doctor in question and their treatment of you.
  • simply_healthy
    simply_healthy Posts: 175 Member
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    Thanks for all the motivating words.. I am hoping to fight this phase and get through it soon. Thanks for being there XoXo
  • cramernh
    cramernh Posts: 3,335 Member
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    I have been working with the Endocrinologist and Dermatologist from NHS for most than a year now. The endo said that she cant put me on spironolactone because that would mean that I have to take contraceptives too and she feels that there is a risk of cloating in lungs etc due to contraceptives as my BMI is more than 25. So she is hell bent on not prescribing spironolactone. Also, my menstrual cycles are fairly regular (With a delay of 5-6 days).


    Are you freaking kidding me?

    I would be asking the Endo for written proof. Ive been on spironolactone for two years, I am a non smoker, and currently taking birthcontrol which works with the spironolactone (Ocella) My BMI when I began was a 47, Im down to 40.1. Never once did any issue of blood clot come up or any indicators thanks to proper blood draw monitoring....... I think your Endo is whacked..... OHHH I cant wait to talk with the Endocrinologists this morning when I go to work. They are going to love this one....
  • castadiva
    castadiva Posts: 2,016 Member
    Options
    I have been working with the Endocrinologist and Dermatologist from NHS for most than a year now. The endo said that she cant put me on spironolactone because that would mean that I have to take contraceptives too and she feels that there is a risk of cloating in lungs etc due to contraceptives as my BMI is more than 25. So she is hell bent on not prescribing spironolactone. Also, my menstrual cycles are fairly regular (With a delay of 5-6 days).


    Are you freaking kidding me?

    I would be asking the Endo for written proof. Ive been on spironolactone for two years, I am a non smoker, and currently taking birthcontrol which works with the spironolactone (Ocella) My BMI when I began was a 47, Im down to 40.1. Never once did any issue of blood clot come up or any indicators thanks to proper blood draw monitoring....... I think your Endo is whacked..... OHHH I cant wait to talk with the Endocrinologists this morning when I go to work. They are going to love this one....

    Please let us know what their response is?! Endocrinologists in the UK seem to be very reluctant to treat PCOS aggressively - it's not well understood here, and 'treatment' is often the "lose weight, then we'll give you the medication that will make weight-loss possible" approach.
  • cramernh
    cramernh Posts: 3,335 Member
    Options
    I have been working with the Endocrinologist and Dermatologist from NHS for most than a year now. The endo said that she cant put me on spironolactone because that would mean that I have to take contraceptives too and she feels that there is a risk of cloating in lungs etc due to contraceptives as my BMI is more than 25. So she is hell bent on not prescribing spironolactone. Also, my menstrual cycles are fairly regular (With a delay of 5-6 days).


    Are you freaking kidding me?

    I would be asking the Endo for written proof. Ive been on spironolactone for two years, I am a non smoker, and currently taking birthcontrol which works with the spironolactone (Ocella) My BMI when I began was a 47, Im down to 40.1. Never once did any issue of blood clot come up or any indicators thanks to proper blood draw monitoring....... I think your Endo is whacked..... OHHH I cant wait to talk with the Endocrinologists this morning when I go to work. They are going to love this one....

    Please let us know what their response is?! Endocrinologists in the UK seem to be very reluctant to treat PCOS aggressively - it's not well understood here, and 'treatment' is often the "lose weight, then we'll give you the medication that will make weight-loss possible" approach.

    What angers me about this is... the Endo I see as a patient AND work with... she has practiced in the UK, India and is now here in the USA....
  • stina0t2
    stina0t2 Posts: 62 Member
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    I would be asking the Endo for written proof. Ive been on spironolactone for two years, I am a non smoker, and currently taking birthcontrol which works with the spironolactone (Ocella) My BMI when I began was a 47, Im down to 40.1. Never once did any issue of blood clot come up or any indicators thanks to proper blood draw monitoring....... I think your Endo is whacked..... OHHH I cant wait to talk with the Endocrinologists this morning when I go to work. They are going to love this one....
    [/quote]


    I also suffer from PCOS and the only option available to me was metformin - which I reacted badly to.
    It's frustrating the way some doctors offer little support when it comes to finding a resolution. Mine essentially told me that if metformin didn't work - I was out of options.
  • cramernh
    cramernh Posts: 3,335 Member
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    Mayo Clinic links
    http://www.mayoclinic.com/health/polycystic-ovary-syndrome/DS00423
    http://www.mayoclinic.com/health/polycystic-ovary-syndrome/DS00423/DSECTION=treatments-and-drugs

    Epstein, Randy Hutter, “Infertility, Excess Hair. Unexplained Weight Gain; Doctors are linking these symptoms to a hormonal imbalance that has severe lifelong consequences. New treatments may provide some relief,” The Washington Post, January 18, 2000, p.Z12.

    Ehrmann DA, Rosenfield RL, “Detection of functional ovarian hyperandrogenism in women with androgen excess,” NEJM 1992; 337:157-62.

    National Women’s Health Information Center. “Polycystic Ovary Syndrome,” Washington, D.C.:U.S. Department of Health and Human Services, Office on Women’s Health. Accessed: Nov.13, 2007. Available online: http://womenshealth.gov/faq/pcos.htm#i

    Consumer Reports. “Spironolactone,” May 2007. Available online: http://www.consumerreports.org/health/drug-reports/spironolactone.htm?resultPageIndex=1&resultIndex=0. Accessed December 6, 2007

    The Boston Women’s Health Book Collective. Our Bodies, Ourselves, Simon & Schuster, 2005; 349

    McKittrick, M, “Diet and Polycystic Ovary Syndrome,” Nutrition Today, March-April 2002 37(2)

    Harris C, PCOS: A Women’s Guide, London: HarperCollins Publishers Ltd., 2000; 45-64

    http://www.asrm.org/

    http://www.pcosupport.org/
    http://www.pcosupport.org/med_treatments.php

    Slam-dunk that doctor
  • cramernh
    cramernh Posts: 3,335 Member
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    I also suffer from PCOS and the only option available to me was metformin - which I reacted badly to.
    It's frustrating the way some doctors offer little support when it comes to finding a resolution. Mine essentially told me that if metformin didn't work - I was out of options.

    Badly react? Did you take it on an empty stomach? Did they start you on a high dose?

    Im cringing at what answer might come on this...

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