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More info on Cushings Disease...

Friday, October 24, 2008

I've had a lot of questions from people regarding what Cushings is. I'm still overwhelmed by everything and trying to figure it out myself, but I thought I'd provide a few links to some great blogs so you can read through them and see for yourself what this is.

It's a horrible, horrible, horrible disease and it's very under-diagnosed. It frustrates me that so many "Cushies" have been dismissed for YEARS by medical professionals until they finally found one that would listen to them. I had the same experience (being dismissed by doctors as just "fat"), but thank GOD I found a doctor early enough who listened to me and tested me for this. It could be much worse. I've been trying to leave Nashville for years, and keep coming back - now I know one of the reasons why. I'm right where I'm supposed to be, when I'm supposed to be there. And have a great doctor that is working with me to get me healthy again. Proud to be a Vandy fan even more so now!

So, here are some blogs for more information on this. And please, please, please - if you KNOW something is wrong with you, I encourage you to not take no for an answer. Seek as many opinions as necessary and get the help you need. It's ridiculous that we have to do that, but it will ultimately save your life one day!

Also, I love this quote. “Genetics and runaway appetite are not the only causes of obesity. Sometimes, your own body can turn against you in ways you never thought possible.” ~Science of Obesity

http://cushingsmoxie.blogspot.com/
http://crushcushings.blogspot.com
http://www.cushings-help.com

  
  Member Comments About This Blog Post:

GADISME 10/24/2008 2:29PM

    just know I love ya Rach...

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Cushing's Syndrome

Friday, September 26, 2008

Well, I got my results back from my endocrinologist yesterday. Did I mention that I LOVE this doctor? I had to fight my PCP to see her (I've fired him and will NOT be going back to his office) but my being proactive with my health proved worth it in the end.

Last Thursday I went to see Dr. Dahir for the first time. She sat down and asked me "So tell me your story. What's going on with you?" You mean you actually WANT to know what's going on with me? So I told her about the headaches, the hair growth, the weight gain, the mood swings, the period problems, etc. She automatically diagnosed PCOS but wanted to run a battery of tests to rule out everything else. She also put me on Metformin, a diabetic medication, to help with the PCOS and insulin resistance.

So they took vile after vile of blood and on Friday I went back and did my glucose tolerance test. On Sunday, I did a 24-hour urine collection (fun stuff). And now, after only a week of being under her care, I already know my results.

She called yesterday afternoon to discuss my lab results, which meant she had found something. She said my glucose, thyroid and estrogen levels all came back normal, so I'm not diabetic, nor do I have hyperthyroidism. Good to know! However, she said my urine analysis came back abnormal.

She said the level of the hormone cortisol was elevated. Normally, it would be between 10-20. When it gets around 50, they start to get alarmed. Mine came back at 208! Which meant I have Cushing's syndrome. To go read more about Cushing's, follow this link:

http://www.mayoclinic.com/health/cushing
s-syndrome/DS00470

It's caused one of three ways. First, my adrenal glands (located above my kidneys) produce too much steroid, causing facial hair growth and weight gain, much like taking a synthetic steroid. Second, there could be a tumor on my pituitary gland causing it to secrete too much cortisol. Or third, there may be a tumor somewhere else in my body causing an overproduction of cortisol.

So now we have to do tests to see what my root cause is, and then we'll know how to treat it.

Even though something is wrong with me, I am so RELIEVED to know that there was something else causing this and it wasn't a failure on my part. I really try to be healthy and stay active, so it's been a VERY hard year for me with this weight gain and depression. Plus, all of the symptoms of Cushing's I have. It's nuts.

So yes...please say a prayer for me if you will and wish me luck. I'm glad to know what's wrong with me now. Now it's time for healing!

  
  Member Comments About This Blog Post:

ALOHAEV1 9/27/2008 8:42AM

    Hear that, that is the sound of everyone writing down your doctor's name! And good for you firing your PCP.

You've taken the first step of many, continued healing.





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KIM0429 9/26/2008 11:51PM

    Hi... My name is Kim. I was just stoping by your page, trying to get to know others with PCOS. I read your blog and was wondering if since you have Cushing's, does that cancel out the diagnosis of PCOS??? I was diagnosed with PCOS in Sept. 2001, but then in 2003 when my husband and I wanted to start to conceive, I started having trouble with high blood pressure nad depression and so my doctor tested me for Cushing's to see if that was what was wrong with me INSTEAD of the PCOS. I ended up have normal cortisol levels in my urine, so I didn't have it. Wow, that probably more than what you needed to know, I was just curious if you then have both syndromes or if like I said , one cancelling out the other... Kind of a personal question, sorry!!!
Thanks-
kim

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GADISME 9/26/2008 2:47PM

    dang that girlfriend of yours was right....sorry you have it Rach but I know that you are for sure gla to know that it truly "IS" something. Now I get to worry like a mom.
love ya girlie


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ZOOKEEPER9996 9/26/2008 12:27PM

    As GI Joe used to say- "Knowing is half the battle!" You must be so relieved to FINALLY have some answers! Good for you for not just accepting some doctor's half-hearted response! Good for you for taking charge of your life! emoticon Now that your battle for diagnoses is ending, you can concentrate on treatment! I have no doubt you'll be just as successful with this task!

And remember, you have many friends pulling for you! Stay strong! emoticon

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Vacation!

Thursday, September 04, 2008

Alright, so it's time to test the waters and see just how "re-trained" I am.

This weekend is my birthday and I have friends coming in from out of town, plus a birthday dinner scheduled, so we'll have to see how well I behave. My mom found a recipe for a South Beach friendly carrot cake (carrot cake is my FAVORITE) so we're going to try it and see if it will suffice. I'm willing. I want to have my cake and eat it, too!

My birthday dinner shouldn't tempt me too much. I purposely picked a good restaurant with fresh ingredients and lots of veggies and seafood, so I should be okay there. I've already planned what I'm going to order - and I know which wine I'm going to drink to celebrate as well. A little pre-planning and I'm good.

The next week, however...I go to Europe. Where food is...life! Last time I was there I indulged in crepes, baguettes, pastries and three or four course dinners and ended up losing weight. Probably because they prepare everything healthier for one...and two, because you walk all over the place.

I'm still nervous, though. I want to be able to eat creme brulee in a Parisian restaurant, or treat myself to a crepe filled with Nutella (oh.my.goodness!) outside of the Eiffel Tower. I want to have afternoon tea in London with scones and cream. I want to experience it all - but I don't want those pounds to come back on. So I'm just praying I keep it in check and don't overindulge too much.

In any event, I AM going to Europe, so who am I to complain? I should just enjoy it and worry about the scale later.

  
  Member Comments About This Blog Post:

WINKERDINK 9/4/2008 11:45AM

    You have done great planning for your birthday! you'll sail thru it with no problem! By the way, Happy Birthday!!

Have a wonderful time in Europe. You will be doing a lot of walking, don't worry about the food. You are a smart person, you know about nutrition, now, you won't overdo. From what I've heard, the portions in other countries are not as ridiculous as in the US. We tend to over-indulge. emoticonJust enjoy yourself! And don't forget your water!

emoticon emoticon emoticon

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TLWILSON629 9/4/2008 10:45AM

    Europe! I'm so jealous! I was an exchange student to Poland back in the late 80's (yes, I know you were like 3 then, but that's fine). It was amazing and incredible and amazing and incredible! I too ate the finest foods and lived life to the very fullest AND LOST weight. It has to be the walking EVERYWHERE that helps so much. I can't wait to hear a full report when you return!

Grace & Peace,
Tricia

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You have PCOS; no you don't have PCOS...

Thursday, August 21, 2008

GRRRRRRRR!!!!!!

emoticon

I've hinted towards my health issues in various board posts, blog entries and on my page. I've known something was wrong for a while. I started noticing it last summer when I suffered from cluster migraine headaches out of the blue. Trip after trip to the doctor and test after test revealed nothing. I was just a migraine sufferer. I was put on daily medication as well as abortive medication. If you know me at all, you know I'm not the biggest fan of pills, so this didn't sit well with me. I didn't want to take a pill to disguise the problem - I wanted the problem FIXED.

I started researching triggers and found that pretty much everything that could be a trigger is a trigger for me. Weather, stress, lack of sleep, too much/too little caffeine, bright lights, estrogen...you name it. So I started concentrating on each one. The only trigger that posed a problem was the estrogen one. I started taking birth control as a teen to regulate my periods and stop menstrual migraines. Last fall, however, that changed. It seemed that no matter which birth control pill I used, no matter how low the estrogen dose, I was still experiencing bad migraines.

Because I wasn't in a relationship, my OB/GYN and I decided we'd try the "no birth control" thing just to see what happened. And lo and behold, the migraines (for the most part) went away. Halleleujah! But then the bleeding started...and never stopped. Even progesterone-only pills didn't help. I had my period for almost three months - YIKES.

I'd already been to my quack of a primary care physician, who insisted I see him when I asked to be referred to an endocrinologist. Poked and prodded and pissed off, I fired him after he told me there was nothing wrong with me because my blood work came back "normal." This was after he had pre-diagnosed me before bloodwork with PCOS, or polycystic ovarian syndrome. I researched it on WebMD and it seemed like an "open and shut" case. I had every single symptom and as I was reading it, I kept exclaiming "That's me!!!!!" But once my blood work came back "normal," he said I didn't have PCOS and I should just diet and exercise.

I'm sorry - but depression (when I'm not a very miserable person), fatigue, mood swings, hair growth in some of the weirdest places you can imagine, acne (when I have great skin usually) and 40 pounds of weight gain in a year? Yeah, buddy...there's something wrong with me!

I decided on my own to try the South Beach Diet. Diabetes runs in my family and one of my biggest concerns was developing Type II diabetes. My aunt had success on the South Beach Diet and I knew it was a very manageable, diabetic-friendly one. When I lost weight instantly on it, as opposed to no weight on every other thing I'd tried (including Weight Watchers) I knew something was up with me. Can we say insulin resistance?!

My OB/GYN (love him!) suggested that I see an endrocrinologist as well. My ovaries and uterus had checked out just fine but that didn't mean that there wasn't something still wrong. So he helped me get a referral to an endocrinologist. My mother, who also suffered from female problems until her hysterectomy last year, saw this same endocrinologist yesterday. She has thyroid issues as well as my brother, so apparently hormonal issues run rampant in my immediate family. My Mom asked the endocrinologist about me and before my Mom could even get most of the symptoms/problems out of her mouth, the endocrinologist stopped her and said "She has PCOS!" My Mom told her what my PCP had said, as well as my ovaries checking out fine with my OB/GYN, but the endocrinologist said that didn't matter. Blood work can come back "normal" and you don't necessarily have to have ovarian cysts in order to have PCOS. She asked my mother to tell me to make an appointment with her so she can help me. Mom said she's really cool, young and above all, LISTENED to my mother.

So...we're back on the path of "Rachel does have PCOS" now. Which will be confirmed and/or treated at my upcoming appointment with this endocrinologist.

Wish me luck!

  
  Member Comments About This Blog Post:

ERINLINDZ 9/3/2008 10:37AM

    My blood work comes back 'normal' all the time... but they insist i have PCOS but do no other tests. I feel your pain!

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ZOOKEEPER9996 8/22/2008 6:38PM

    Sometimes, even when you have no signs or symptoms of problems, a problem can be there lurking. Keep being persistent & doing your own research beyond what your doctors say. It may be a doctor's job or specialty, but it's YOUR body! You're so right to keep yourself educated & ask questions!

And I know this may be a kinda personal question, but have you had internal exams and/or sonograms? My blood work was always "normal" too. I never would have known about the grapefruit sized tumor on my ovary if my OB/GYN hadn't done an internal exam (very uncomfortable- but obviously necessary). I had no pain or other symptoms to that point! Be vigilant with your health- especially if your doctors aren't! emoticon

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GADISME 8/21/2008 3:15PM

    luck to you lovely lady....

love ya
me emoticon

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10% at a time...

Tuesday, August 19, 2008

I recently read a highly motivational article that put things in perspective for me. Most people will set lofty weight loss goals for themselves and then ultimately fail because they've set themselves up. For instance, according to this article, most people set a weight loss goal of at least 38% for themselves. Which is A LOT of weight to lose. When they don't reach that goal, they get discouraged, depressed and ultimately give up the good fight.

This article advises that the trick to achieving a goal like that is to break it down into smaller goals. A 10% goal is much easier to achieve than a nearly 40% goal. But the satisfaction that you get from achieving that first small goal is astronomical. The 200-pound woman who loses 20 pounds sees that as success - not as a failure.

So I decided to break down my weight loss goals into four separate 10% goals. I used my starting weight for the first goal. I'm proud to say that I'm approximately 5 pounds away from reaching my first goal. Just by reducing my body weight 10%, I will have helped my body immensely. Feeling better, curbing depression, not to mention blood pressure and cholesterol levels (even though I'm pretty lucky in those departments). My risk for diabetes and heart disease will be drastically reduced. And I will have reached my first goal - which is motivation enough to get started toward achieving the next one.

I'm not sure how long it will take me to reach each 10% goal. So far, it's taken me almost three months to get where I am now. I'm at approximately 18 pounds and 8.5 inches total since Memorial Day Monday (my official start date). So it's coming off slowly, but steadily. So many people comment on how thin I'm looking even though I really haven't lost THAT much. I'll take it, though. And be sure to congratulate myself on every ounce lost.

Here's to the first 10% - I'll be there shortly!

  
  Member Comments About This Blog Post:

TLWILSON629 8/27/2008 4:22PM

    That's the way I'm doing it too! I'm on my second 10%, about half way through. The scale doesn't seem to be moving much and I'm only peeking once a week (if that). Funny thing is the people commenting on how I'm changing has increased drastically (since I dropped the nasty scale habit). God is good - He's my focus and he just reflects any praise I give Him ten fold back to me. What a great deal!

Grace & Peace,
Tricia

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GADISME 8/19/2008 4:20PM

    you go girl with your educated self....I can't wait for you to get to where you want to be Rach. I love ya girlie girl...and I am VERY proud of you for not throwing in the towel. I still remember that phone call I got where you were so upset and I am so happy that you stuck to your guns.
love
me

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CANDICAN 8/19/2008 3:45PM

    This is GENIOUS! I am changing my goals today. I have been very discouraged lately and have been looking for a reason to keep going, but 10% is much mor realisitic. Thanks for mentioning this today. It really helped me!! emoticon

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NITABUG68 8/19/2008 3:44PM

    Good for you!!!! It's amazing how monumental that 10% can actually be once you achieve it. Keep up the great work, and in no time at all, you'll be blogging about your 2nd and 3rd 10%!!!! All the best, Anita emoticon

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