ChristiewPCOS
March 30th
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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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Monday, March 26, 2007
PCOS + Symptoms, Tests, Websites.

 

PCOS

Symptoms, Tests, Websites, Forum


PCOS & LOCAH & THYROID 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)... Copy this and check off your symptoms, also keep a master copy and be sure to pass this on...


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...................PCOH.*.LOCAH.*.ME
---------------------------------------------------------------------
..........................pX = PCOS, lX = LOCAH, tX = THYROID

* Periods *
- absent................................pX.....lX............__
- irregular.............................pX.....lX....tX...__
- 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..............tX......__
- gain easy............................pX..............tX......__
- 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.................__
- Rosacea..............................pX.............................__
* 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....tX...........__
- severe...............................................lX...................__
- Heart Disease.....................pX..........lX..................__
- Hormone Disorder.............pX..........lX...................__
- Neurological stuff.............................lX..................__
- Depression..........................pX..........lX....tX..........__
- Hyperinsulinemia................pX...............................__
- excess Androgens..............................lX..................__
- Atherosclerosis..................................lX..................__
- Hormone Imbalances.........pX...........lX..................__
- low sex drive.....................pX............lX....tX...........__
- RLS-Restless Leg Syndrome...pX.............................__
- 21 Hydroxylase
    - deficiency.......................................lX…...............__
- 17 OHPS                                           
    - high - over 30 NG/DL....................lX...................__
- Total Testosterone, NG/DL
    - 59 is high, 40 is elevated................lX...................__
- UTI - Urinary Tract Infection..pX............................__
- enlarged clitoris..................................lX...................__
- deepened voice...................pX............lX..................__
- Endometrial Cancer..........pX.............lX..................__
- Endometrial Hyperplasia....................lX..................__
- Sleep Apnea........................pX............lX...................__
- 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...

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 ... *  www.soulcysters.net  *
- PCOS women, information, forum, resources, etc... Worth joining!


www.pcosupport.org
- PCOS Association with research, information, resources, etc...

www.pcolist.org

- PCOS Association's email forum lists... 1st hand experiences... YOU join, be yourself, post questions and get honest answers, in return learning so much!



http://www.inciid.org/faq.php?cat=infertility101&id=2

- International Council on Infertility Information Dissemination...
Exceptionally informative site with a list of more sites...


Quick FAQ Sheet
- PCOS Informational Center...
www.pcos.itgo.com

www.PCOSCoach.com  -  Excellent site for info, news, books, links...

Thyroid Site
http://thyroid.about.com/cs/hypothyroidism/a/checklist.htm

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)... But,
LOCAH effects women and men...

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...

OR
       - 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....

AND
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
- Joslin Diabetes Center (Harvard Education)

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

Delphi Forums... Use link below for online symptoms list...
http://forums.delphiforums.com/n/main.asp?webtag=medical&msg=41530.1&
find=Search  
- Free to join and well worth surfing the forums...

Sincerely,
Frisky Filly
San Diego, California ... Now in New Jersey

* You do not have to have a polycystic ovary to be diagnosed with PCOS…
* Ultrasounds are not necessary in diagnosing PCOS…
* PCOS is diagnosed from you having one or more symptoms…This is due to PCOS being a syndrome…
* Syndrome O – now exists for women without cysts…
* Syndrome X – is the male version of our hormone imbalance…
- This syndrome has been known of for years in men!
- My hubby has most of the same symptoms, problems I do… (minus female things)

TESTS for PCOS
 
PCOS - Polycystic Ovary Syndrome

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*....

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^....

FYI:  Serum Insulin Level test (KEY) - ADD it to your needed test list... Your level must be below 11... IF 12 and higher you will NOT LOSE weight!  The only way to lower this level is exercise... * I just learned this from Susan in PCOS Pals Yahoo Group, 4/07*
 
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)....

FYI:  Serum Insulin Level test - ADD this to your list...Your level must be 11 and under inorder to lose weight... If it's over 12, you will not be able to lose!  The key to lowering the serum level is exercise...  Ultrasounds To Have:     Abdominal (regular one) and a TVS - TransVaginal   * These have not been deemed necessary to diagnose PCOS *
FACT:  Ultrasounds are not 100% accurate...Per the manufacturer, i called them directly in 2003...     Lab Tests Can Be Interpreted Here:    http://www.fertilityplus.org/faq/hormonelevels.html  - Fertility Plus Organization... Pregnancy tests are explained also....
AND  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  - 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 ...
FYI:  YOU have to know about PCOS, i can't stress it enough...YOU also have to know all the treatments available to you... Treatment is a HIT & MISS scenario... YOU are in control with PCOS over your doctors... FACT: 2004 the AACE www.aace.com made PCOS a priority to doctors... 
www.aace.com/pub/pdf/guidelines/PCOSpositionstatement.pdf ... Your life is at stake with PCOS, literally! I wish you all well, Frisky Filly ... Christie
E-mail: friskyfilly6@yahoo.com  - Feel free to email me, put PCOS Blog in Subject line....
Blog:  http://pcoslady.blogdrive.com/
  POSTING NOTE:  Reposted due to disappearing and i get errors on every post, plus i have to double space sites so they are easy to read... Sorry, it's the blog site... Christie

Posted at 09:07 am by ChristiewPCOS
 

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