"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...
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...
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...
- PCOS Association's email forum lists... 1st hand experiences... YOU join, be yourself, post questions and get honest answers, in return learning so much!
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...
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...
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*
* = 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:
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....
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
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...
- 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...
- *** (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..
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...
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...
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...*
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...
^ = 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:
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…
You can use this checklist to bring to your doctor to help aid in getting a proper diagnosis of hypothyroidism, or as background information in your discussions regarding finetuning your dosage so you are at the optimal TSH level for your own level of wellness.
My risk factors for hypothyroidism include:
____ I have a family history of thyroid disease ____ I have had my thyroid "monitored" in the past to watch for changes ____ I had a previous diagnosis of goiters/nodules ____ I currently have a goiter ____ I was treated for hypothyroidism in the past ____ I had post-partum thyroiditis in the past ____ I had a temporary thyroiditis in the past ____ I have another autoimmune disease ____ I have had a baby in the past nine months ____ I have a history of miscarriage ____ I have had part/all of my thyroid removed due to cancer ____ I have had part/all of my thyroid removed due to nodules ____ I have had part/all of my thyroid removed due to Graves' Disease/hyperthyroidism ____ I have had radioactive iodine due to Graves' Disease/hyperthyroidism ____ I have had anti-thyroid drugs due to Graves' Disease/hyperthyroidism
I have the following symptoms of hypothyroidism, as detailed by the Merck Manual, the American Association of Clinical Endocrinologists, and the Thyroid Foundation of America
____ I am gaining weight inappropriately ____ I'm unable to lose weight with diet/exercise ____ I am constipated, sometimes severely ____ I have hypothermia/low body temperature (I feel cold when others feel hot, I need extra sweaters, etc.) ____ I feel fatigued, exhausted ____ Feeling run down, sluggish, lethargic ____ My hair is coarse and dry, breaking, brittle, falling out ____ My skin is coarse, dry, scaly, and thick ____ I have a hoarse or gravely voice ____ I have puffiness and swelling around the eyes and face ____ I have pains, aches in joints, hands and feet ____ I have developed carpal-tunnel syndrome, or it's getting worse ____ I am having irregular menstrual cycles (longer, or heavier, or more frequent) ____ I am having trouble conceiving a baby ____ I feel depressed ____ I feel restless ____ My moods change easily ____ I have feelings of worthlessness ____ I have difficulty concentrating ____ I have more feelings of sadness ____ I seem to be losing interest in normal daily activities ____ I'm more forgetful lately
I also have the following additional symptoms, which have been reported more frequently in people with hypothyroidism:
____ My hair is falling out ____ I can't seem to remember things ____ I have no sex drive ____ I am getting more frequent infections, that last longer ____ I'm snoring more lately ____ I have/may have sleep apnea ____ I feel shortness of breath and tightness in the chest ____ I feel the need to yawn to get oxygen ____ My eyes feel gritty and dry ____ My eyes feel sensitive to light ____ My eyes get jumpy/tics in eyes, which makes me dizzy/vertigo and have headaches ____ I have strange feelings in neck or throat ____ I have tinnitus (ringing in ears) ____ I get recurrent sinus infections ____ I have vertigo ____ I feel some lightheadedness ____ I have severe menstrual cramps
Complaint: Overweight, rundown and exhausted... Problem: Her *diet and little exercise...
Fact: Look outside their life to pinpoint the problems... Fact: 2 weeks of eating right WILL shift your life curve... BUT, eating right then eating bad for 2 weeks will change that life curve, too... Fact: The biggest changes are outside of you!
5 Things to AVOID
1. sugar... 2. high fructose corn syrup - ages arteries and hurts your immune system... 3. hydrogenated oil & partially hydrogenated - leads to heart disease... 4. enriched (flour, etc...) - They took it out and put the bad back in... 5. salt
* Olive Oil improves arteries! - Sugar & water drinks are BAD! * Eat foods from the earth and nature! * Air popped popcorn is good for you...
Yesterdays Oprah Show was interesting, too! Monday is Dr Oz Day...He covered those embarrassing questions... Dr Lisa Masterson from Cedars Sinai in LA, CA said; 1. If your monthly clots are bigger than an egg, see your doctor... 2. Take Motrin 2 days before your period to lower the harsh cramping...
Hello Ladies,I have been reading through your posts... I have to pose questions with PCOS... Polycystic Ovary Syndrome...PCOS creates HAVOC on your hormones...Have your doctors ever mentioned PCOS to you?...Have you ever had a complete hormone set of blood tests done?... Do any of you have PCOS?.... PCOS will still be present after a Hysterectomy....My theory is if doctors knew about PCOS and tested the hormones 1st... I feel less Hyterectomies would be done... The hormones would be straightened out before the thought of a Hysterectomy was thought of.... I realize some cases have no choice but to operate...1989 I had a complex mass with "cysts"... Hysterectomy was next, if ithe mass did not disappear... It left me, yippie! I was given 7 different drugs that week...I have PCOS and am curious on the questions I asked above....
I am a 31 year old women and I have PCOS. I was told 7 years ago by my family doctor that as long as I didn't want to have a baby not to worry about it. I went to my yearly check ups and paps came back neg. I had very irregular periods for 20 years. I had one child when I was 20. When I got a period this year that went on for 6 weeks I went to a OB/Gyn. She refered me to an Endrocronologist. He did do all the blood, Urine and 3 hour gloucose tests and determinded I did have PCOS. He put me on a hormone to stop my period and talked about birth control and a diabetic drug to manage my PCOS, he also recomended a nutristionalist for me to see. Well the hormone he gave me stopped the bleeding but a week later it started up very heavy and would not stop. I was admitted a week later for being very animic and given 2 units of blood. The doctor gave me high doses of estrogen to try and stop the bleeding but I ended up needing a D&C. Then I went on birth control. A week later he called and told me that a pathology report came back and the endro sample he sent came back a typical. He recomended a hysterectomy if I was done having children. I went ahead with the surgery. The day after the surgury the doctor came in and told me the test results on my uterous were Severly A typical. This was 4 weeks after the D&C. He said the next step would have been cancer. Women need to know about PCOS, I put it off for years and I was very lucky to catch it before it turned to cancer. If anyone suspects PCOS find a good Endrogronoligist and follow threw with it.
Jen
Posted 7/18/03 12:36 AM Fromfriskyfilly ToJennifer
Jen,
May I keep your story as a "reminder/note" to other women? I am on a crusade to educate and inform women and doctors of PCOS & LOCAH... Your story is an extreme case that had a happy ending...Thankyou for confirming, if the PCOS was treated early on, maybe a Hysterectomy was not needed...
Christie
Posted 7/18/03 7:09 PM FromJennifer Tofriskyfilly
Christie Please use it as you would like. I want as many people to know about this condition as possible. Anything else I can do please let me know.
