ChristiewPCOS
March 30th
Female
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"Welcome to my PCOS Blog" I'm Christie, 48, married to a much younger man and we have four dogs as our kids...

My personal crusade is to inform and educate women, men and the medical professionals on PCOS... Why? Knowledge is POWER! The info will save your life or someone you may or may not know...

PCOS is an endoctrine disorder affecting your whole body as a hormone imbalance...The PCOS symptoms wreak HAVOC through your entire body... Symptoms can be mild to extreme, one to numerous symptoms... You can be thin to obese...

My PCOS Journey started by a lingerie shop owner stating "You look like me"... We talked about PCOS a while...I kept mentally checking off all the symptoms she mentioned... My symptoms are mild, 28 of the 48 i found... I saw my doctor the next week, had a battery of tests done, researched everything i could find on PCOS... My diagnosis was PCOS, Metabolic Syndrome, Insulin Resistance (IR), Perimenopause, Hypertension, Rosacea and Preborderline Diabetes... My "Miracle Pill" is Glucophlage XR... On it i get thinner than when i was in 6th grade!

My blog posts are of info you need and should know...I urge you to pass the PCOS & Syndrome X word on... Yes, men get a version of PCOS called Syndrome X...

Feel free to email me privately...

Knowledge is POWER!
Christie

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Wednesday, March 28, 2007
PCOS - Symptoms, Websites, Tests...
PCOS
Polycystic Ovary Syndrome
 
  1. traditional PCOS -- anovulatory, increased androgens, no insulin resistance
  2. endocrine syndrome X -- anovulatory, increased androgens, insulin resistance or type 2 diabetes
  3. non-traditional PCOS --anovulatory, normal androgens, obese, insulin resistant or type 2 diabetes
  4. non-traditional PCOS -- ovulatory, increased androgens, mild insulin resistance
  5. idiopathic hirsutism -- ovulatory, increased androgens, no insulin resistance
PCOS & LOCAH Symptoms w/Websites

This list of symptoms and websites are beneficial for you to read over...Some of you may have the symptoms or know a lady that does...A quick indicator is those of us that carry their extra weight in the tummy and chin... (Thin women can have PCOS &/or LOCAH, too)
READ ON...

Symptoms for PCOS and LOCAH compiled from sites, forums, groups, research, etc...

PCOS - Polycystic Ovary Syndrome
LOCAH - Late Onset Congenital Adrenal Hyperplasia

SYMPTOMS.................PCOS.........*.LOCAH.*
---------------------------------------------------------------------
..............................pX = PCOS...... lX = LOCAH

* Periods *
- absent...............................pX........lX......__
- irregular.............................pX........lX......__
- heavy, clots-golf balls......pX.................__
* Pregnancy *
- infertility.............................pX.......lX......__
- trouble getting...................pX.......lX......__
- miscarriages......................pX.......lX......__
* Hair *
- excessive...........................pX.......lX......__
- thinning...............................pX.......lX......__
- facial....................................pX......lX......__
- pubic - early...................................lX......__
- zebra line- chest to belly...............lX......__
- oily hair................................pX......lX......__
* Weight *
- obesity.................................pX......lX.....__
- hard to lose.........................pX...............__
- gain easy.............................pX...............__
- IR - Insulin Resistance.......pX......lX......__
- Metabolic Syndrome...........pX.....lX......__
- fluid retention.................................lX......__
* Skin *
- acne......................................pX.....lX......__
- dark skin patches.................pX..............__
     (ex: nape of neck) 
- skin tags...............................pX...............__
- jaundice (yellowish)........................lX......__
- oily skin (excessive)............pX......lX......__
- dry scalp...............................pX.....lX......__
* Cysts *
- ovaries..................................pX...............__
- liver tumors.....................................lX......__
- liver cancer.....................................lX......__
- kidney tumors.................................lX......__
* Diabetes *
- Type II (2).............................pX.....lX......__
- Gestational............................pX.....lX......__
* Cholesterol *
- high........................................pX.....lX......__
- high LDL..........................................lX......__
- low HDL...........................................lX......__
* Triglycerides *
- high........................................pX......lX......__
* Blood Pressure *
- high.........................................pX.....lX......__
* Misc.... *
- Hypertension..........................pX.....lX......__
- Stress.....................................pX.....lX......__
- Anxiety....................................pX.....lX......__
- Panic Attacks...................................lX......__
- Moodiness..............................pX.....lX....__
- severe...............................................lX......__
- Heart Disease.........................pX.....lX......__
- Hormone Disorder..................pX.....lX......__
- Neurological stuff..............................lX......__
- Depression..............................pX.....lX......__
- Hyperinsulinemia.....................pX..............__
- excess Androgens............................lX......__
- Atherosclerosis.................................lX......__
- Hormone Imbalances..............pX.....lX......__
- low sex drive.............................pX.....lX......__
- 21 Hydroxylase
    - deficiency.......................................lX......__
- 17 OHPS                                             
    - high - over 30 NG/DL.....................lX......__
- Total Testosterone, NG/DL
    - 59 is high, 40 is elevated...............lX......__
- enlarged clitoris..................................lX......__
- deepened voice..................................lX......__
- Endometrial Cancer...................pX....lX......__
- Endometrial Hyperplasia....................lX......__
- Sleep Apnea............................pX......lX......__
- Restless Leg Syndrome.........pX…..IX…...__
- Iron low.....................................pX......lX......__
- Calcium low..............................pX......lX......__
- low B12.....................................pX......lX......__
- Ferritin level low........................pX......lX......__
   *add iron if under 100-150
* Menopausal *
- estrogen loss............................pX.......lX......__
- hot flashes.................................pX................__
- skin thinning...............................pX................__
- elevated sensitivity....................pX................__
- Cardio Disease..........................pX................__
- effects on bladder
    - negative..................................pX................__
- effects on vagina area
    - negative...................................pX................__
- reduction in bone density...........pX................__
- Androgen levels high..................pX................__
- poor lipid levels...........................pX................__
- Hormone Imbalances.................pX........lX......__

Important info found in research as well...Research is ongoing:
- PCOS is hereditary…
- Symptoms are being added constantly from research findings...
........RLS - Restless Leg Syndrome was recenly added...

Birth Control Pills lower all your hormones... If some are still high, you could have PCOS &/or LOCAH... (per a research facility manager)

2/98 Cosmopolitan Magazine article on PCOS  by Dr. John Nestler, MD, professor of Endocrinology in Virginia ...

Diagnosing problems - each woman may exhibit a different combination of symptoms or no symptoms at all, etc....
- Experts now believe to be at the root of PCOS, is an inability to respond properly to insulin followed by;
.............- high Cholesterol
.............- obesity
.............- high blood pressure
.............- risk of Diabetes
.............- heart disease

*** If women have regular periods and normal levels of testosterone, they DO NOT have PCOS... Per Dr. Nestler...***

Research shows LOCAH can bring PCOS on... Further research shows women will experience more or less symptoms of PCOS & LOCAH through their lives...

LOCAH  Sites
http://www.members4.boardhost.com/LOCAH/

- LOCAH forum for info and participating in...

http://www.cahsupportforum.com/locah.html

- CAH Support Forum, extensive info on CAH and LOCAH...

www.caresfoundation.org

- Care Foundation

PCOS Sites
www.ivf-et.com/pcosstate
- The Center for Applied Reproductive Science...

www.soulcysters.com

- PCOS women, information, forum, resources, etc...
- PCOS organization with research, information, resources, etc... 
 
- *** (free to sign up – 1st hand experiences) ***                                                         
- You will relate to almost every woman in here some way...
- Excellent place to be yourself, post questions and get honest answers and ideas...
- Part of the PCOS organization with an email forum set up with categories...

http://www.inciid.org/faq/pcos.html
- International Council on Infertility Information Dissemination...
*Exceptionally informative site with a list of more sites..
 
FAQ's on PCOS - http://pcos.itgo.com  at a glance...
 
-  Great site for information, news, books, links, etc... 
  
Androgen Site
http://wwwthorne.com/townsend/mar/wns_update.html
- Info on Androgens and women's health ( worth reading)

Notes from research
PCOS is only in women at present... (research on men is going on)... Men do get Syndrome X...But, LOCAH effects women and men...
- Research has proven PCOS is hereditary...

My advice to all women having any of these symptoms;
- Print this list out, check off your symptoms and show your doctor... NEVER take "NO" for an answer...  Most likely he or she does not know about PCOS & LOCAH...  Or have very little knowledge of both...
- Medical history, etc... plays a huge part in your diagnosis ...
- Push to see a Reproductive Endocrinologist familiar with PCOS & LOCAH...
       - Call Penn State University (PCOS research dept) for a referral... Phone #: 800.585.9585...
       - Call the Cedars Sinai PCOS Research Center for a referral... Phone #: 310.423.9964...
* Realize... PCOS & LOCAH are rare diseases/disorders... They are listed with the Rare Disease website...
http://www.rarediseases.org

PCOS & LOCAH Tests:

LOCAH
- Along with symptoms
    - ACTH Test - it is a blood test... Be sure blood is drawn 3x's!

PCOS...................................................DONE/date
- Along with symptoms                        
....- Ultrasound.....................................__/___________
....- Total Testosterone.......................__/___________
....- 17 OHPS.......................................__/___________
....- LH...................................................__/___________
....- hormonal testing............................__/___________
....- Calcium..........................................__/___________
....- Iron.................................................__/___________
....- Diabetes........................................__/___________
....- Cholesterol....................................__/___________
....- Tryglycerides.................................__/___________
....- Free Glucose................................__/____________
....- Insulin............................................__/____________
....- IL-6................................................__/____________
* Your doctor may want more...
.....- PCOS - Thyroid Disorder and Cushings Disease need ruled out...

* READ your test results !!! Keep copies of all your tests, doctor visit
notes/charts, etc...  You will see a pattern and be able to gain info and
insight from forums on PCOS & LOCAH from it...

Test Results are explained here:
http://www.fertilityplus.org/faq/hormonelevels.html
- Fertility Plus Organization... Pregnancy tests are explained also....
http://www.labtestsonline.org/index.html
- Lab Tests Online...Public resource on clinical lab testing...

Conversion Table for Blood Glucose Monitoring:
"http://www.joslin.harvard.edu/education/library/conversiontable.shtml">
http://www.joslin.harvard.edu/education/library/conversiontable.shtml
- Joslin Diabetes Center (Harvard Education)

Guess what?
YOU end up having to educate your doctor(s).... I quess the price paid for rare disorders, syndroms, etc...

I have personally gathered all this information and more for my own quest in being diagnosed with PCOS & LOCAH...
- I hope the info will help you or someone you know... 
- Treatment is a HIT or MISS for each woman...FACT:  No one thing works for everyone...We are all individuals with PCOS...                                         
* YOU could be saving their life by passing the PCOS word on...*

Delphi Forums... Use link below for online symptoms list...
http://forums.delphiforums.com/n/main.asp?webtag=medical&msg=41530.1&<br>find=Search
- Free to join and well worth surfing the forums...
 
PCOS - Polycystic Ovary Syndrome Tests
 
The list of tests below are compiled from research, PCOS ladies and doctors...
* PCOS ladies have experienced needing these tests because their doctors do not know how much PCOS effects the body... 
 
* Important:
-  For accurate results be BCP FREE for 2 solid months...
-  Rule out Cushings and Thyroid problems...
 
Tests To Request:
 
CMP/Basic Metabolic Panel
Glucose^....Urea Nitrogen (BUN)....Creatine....BUN/Creatine Ratio....Sodium....Potassium...Chloride....Carbon Dioxide...Calcium*....
 
FYI:  Serum Insulin Level test - The level must be 11 or lower inorder for us to lose weight!  ADD it to your test list... Doctors rarely ever include it... The number/test is a major "KEY" to losing weight...
- If over 12, you will not lose, guaranteed! 
 
Lipid Panel
Triglycerides....Total Cholesterol....HDL Cholesterol....LDL Cholesterol....Chol/HDLC Ratio....
 
Hepatic Function Panel
Total Protein....Albumin....Globulin....Albumin/Globulin Ratio....Total Bilirubin....Direct Bilirubin....Indirect Bilirubin....Alkaline  Phosphate ....AST....ALT...ALP....
 
Insulin^....T3...T4....TSH^....17 OHPS....17 PO ....DHEA-S^....FSH^.... LH^....Prolactin^....Hypothyroidism^....
 
FreeTestosterone^....Total Testosterone^....SHBG^....
 Iron*....Magnesium*....IL-6'*....Ferritin*....B12*.... Estrogens....
 
* = tests you need to request...
^ = tests needed for a suspected hormone disorder...
'  = * special test done to warn of 3 things PCOS (1st 3 listed) can lead to....IL-6 is Interleukin - 6 ....I found this deep in heart disease research...
      ( Heart Disease....Diabetes....Osteoporosis....frailty.... certain cancers )
 
Blood Tests Needed Before Prescribing Metformin/Glucophage:
 
LH....FSH....E2 (Estradiol)....DHEA-S....T....17 OHP.... Prolactin....TSH....BUN....CR....AST....ALT....LDH....
Glucose (fasting)....
 
Ultrasounds To Have:
 
Abdominal (regular one) and a TVS - TransVaginal
* These have not been deemed necessary to diagnose PCOS *
 
Lab Tests Can Be Interpreted Here:
 
http://www.fertilityplus.org/faq/hormonelevels.html
- Fertility Plus Organization... Pregnancy tests are explained also....
http://www.labtestsonline.org/index.html
- Lab Tests Online...Public resource on clinical lab testing...

Conversion Table for Blood Glucose Monitoring:
"http://www.joslin.harvard.edu/education/library/conversiontable.shtml">
http://www.joslin.harvard.edu/education/library/conversiontable.shtml
- Joslin Diabetes Center (Harvard Education)

Ladies
This is a strong guide of tests you should have done at some point... Your doctor may take less or more, your insurance may not cover some... If your doctor requests more, ask WHY... If your insurance does not cover them, ask WHY and have your doctor explain why the need in writing to them...
 
I hope this list further helps you in proper testing to give you a precise view of where you stand with your body in having PCOS... You are then able to know what needs done to make the wrongs right....
-  These tests sure showed me what's what ...
…….1/07 I educated the doctors and nurses on PCOS while hospitalized…
 
I wish you all well,
Christie
San Diego, California
- now in New Jersey

Posted at 09:11 pm by ChristiewPCOS
 

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