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Janice B (NotSoCushie), Pituitary Bio

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The pituitary gland

The pituitary gland

 

Hi All: I had Cushing’s with a pituitary tumor. My endo always said I had too many symptoms. He said he could isolate the Cushing’s symptoms, but he was still left with a handful of other symptoms unrelated to Cushing’s, so he thought I had something else in addition to Cushing’s. But he said, one thing at a time.

I had the transf….up the nose surgery to remove the tumor on 3 April/2013. Successfully removed, however the surgeon nicked the pituitary gland and now I have adrenal insufficiency and take 5mg prednisone for life.

Then the something else turned out to be uterine cancer so I had an operation on 28 Nov/2013 for that. I am feeling my old self.

Last year was able to walk playing 9 holes of golf. This year goal is to walk 18 holes of golf. Today I consider myself Not So Cushie and am grateful for each day I have of good health.
I am writing my memoir: IT WAS THE GREATEST LOVE STORY EVER and have completed a one-person play of the same name based on the memoir. If anyone is interested in following my progress on these two things please see my website:janbarrett7.wordpress.com.

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Cushing’s Awareness Challenge 2015

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Not a bio but folks who write bios might like to participate!

 

awareness

 

The Cushing’s Awareness Challenge is almost upon us again!

Do you blog? Want to get started?

Since April 8 is Cushing’s Awareness Day, several people got their heads together to create the Fourth Annual Cushing’s Awareness Blogging Challenge.

All you have to do is blog about something Cushing’s related for the 30 days of April.

There will also be a logo for your blog to show show you’ve participated.

Please let me know the URL to your blog in the comments area of this post or an email  and I will list it on CushieBloggers ( http://cushie-blogger.blogspot.com/)

The more people who participate, the more the word will get out about Cushing’s.

Suggested topics – or add your own!

  • In what ways have Cushing’s made you a better person?
  • What have you learned about the medical community since you have become sick?
  • If you had one chance to speak to an endocrinologist association meeting, what would you tell them about Cushing’s patients?
  • What would you tell the friends and family of another Cushing’s patient in order to garner more emotional support for your friend? challenge with Cushing’s? How have you overcome challenges? Stuff like that.
  • I have Cushing’s Disease….(personal synopsis)
  • How I found out I have Cushing’s
  • What is Cushing’s Disease/Syndrome? (Personal variation, i.e. adrenal or pituitary or ectopic, etc.)
  • My challenges with Cushing’s
  • Overcoming challenges with Cushing’s (could include any challenges)
  • If I could speak to an endocrinologist organization, I would tell them….
  • What would I tell others trying to be diagnosed?
  • What would I tell families of those who are sick with Cushing’s?
  • Treatments I’ve gone through to try to be cured/treatments I may have to go through to be cured.
  • What will happen if I’m not cured?
  • I write about my health because…
  • 10 Things I Couldn’t Live Without.
  • My Dream Day.
  • What I learned the hard way
  • Miracle Cure. (Write a news-style article on a miracle cure. What’s the cure? How do you get the cure? Be sure to include a disclaimer)
  • Health Madlib Poem. Go to : http://languageisavirus.com/cgi-bin/madlibs.pl#.VPGZQlPF9A8 and fill in the parts of speech and the site will generate a poem for you.
  • The Things We Forget. Visit http://thingsweforget.blogspot.com/ and make your own version of a short memo reminder. Where would you post it?
  • Give yourself, your condition, or your health focus a mascot. Is it a real person? Fictional? Mythical being? Describe them. Bonus points if you provide a visual!
  • 5 Challenges & 5 Small Victories.
  • The First Time I…
  • Make a word cloud or tree with a list of words that come to mind when you think about your blog, health, or interests. Use a thesaurus to make it branch more.
  • How much money have you spent on Cushing’s, or, How did Cushing’s impact your life financially?
  • Why do you think Cushing’s may not be as rare as doctors believe?
  • What is your theory about what causes Cushing’s?
  • How has Cushing’s altered the trajectory of your life? What would you have done? Who would you have been
  • What three things has Cushing’s stolen from you? What do you miss the most? What can you do in your Cushing’s life to still achieve any of those goals?
  • What new goals did Cushing’s bring to you?
  • How do you cope?
  • What do you do to improve your quality of life as you fight Cushing’s?
  • How Cushing’s affects children and their families
  • Your thoughts…?

Jill (Jillleesmith), Adrenal Bio

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adrenal-glands

 

Cushing’s Syndrome
Addison’s Disease

After I had my daughter in 1995, I started gaining weight. I went from 110 pounds to over 200 pounds in a year. I had so many symptoms and was told to quit eating. My family wondered what happened to me. I never ate much. I was always the smallest one. One doctor even wrote me a prescription to get a dog. Over the course of 10 years, I was told I had possible MS, high blood pressure, diabetes, weight gain, severe depression resulting in several suicide attempts, hallucinations, declining vision, stress, severe fatigue, inability to work, divorce, personality disorder, inability to walk the stairs or walk for that matter and numerous others.
I went undiagnosed for 10 years. I was home sick one day on September 9, 2006. I was watching Mysterious Diagnosis and saw a woman with my symptoms. She had Cushing’s Disease. She turned out to be Sharmyn McGraw, a friend and mentor. I made an appointment for the next day. I asked my doc to test me for Cushing’s. I was diagnosed with multiple tumors in each adrenal gland called Cushing’s Syndrome. I was literally on my death bed. I was unable to care for all my kids and had given my cousin custody of my oldest son and my ex was given full custody of my daughter. I did manage to care for my son Gavin, who actually took care of me. Riding his bike home from school to make sure I was ok and riding his bike home right after school to take care of me.

I went through many different testing including vein catheterization to see which adrenal needed to come out first. I begged my endo to just take them both but with that it would mean I would have to be on steroid replacement everyday for the rest of my life in order to sustain life. I had surgery on November 14, 2006 to remove my left adrenal gland. I lost 45 pounds in 1 month but all of a sudden I was gaining weight once again. It was found that the other tumor riddled adrenal gland needed to come out.

On February 14, 2008, I had my right adrenalectomy. This was an even more difficult recovery. I was hospitalized for 15 days. Resulting in Addison’s Disease, I am unable to work. I lost my home, my kids, my animals, my car, my life. I have not been able to return to work and am on disability. I am just surviving.

The reason for this letter???? First, I want to bring awareness to these very rare life-threatening diseases, Cushing’s Syndrome and Addison’s Disease. My body has never recovered from the extreme weight gain and weight loss. The overproduction of cortisol for 12 years, has caused irreversible damage to my body. I have lost 40 pounds. My stomach hangs and gets in the way. I could never be intimate with anyone because of how my body looks.

Steroids everyday for the rest of my life is a hard pill to swallow. Forgive the pun. Lol

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Brenda, Steroid-Induced Cushing’s

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golden-oldie

 

I have had Cushing’s for two years. I have been to Mayo Clinic four times in the last two years, and just recently was accepted and seen at the National Institue of Health’s Rare Disease Program in Bethesda, Maryland. I am from Michigan.

I am 34 years old-a RN, BSN who had worked for ten years happily as a nurse-then I became quite ill due to my Interstitial Cystitis-my Urologist put me in the hopstial-I came out of the hospital after five days, and ten days post hospitalization I awoke with severe joint pain, pitting edema, night sweats, fever, Short of Breath, I had a seizure the next day…..I had only been 135 puonds-very active, worked out-played the clarinet in my church orchestra weekly for three services.

After this illness-I was put on steroids to decrease the joint swelling-turns out I was exposed to Legionella disease during the hospital stay and most likely contracted it after taking a shower at the hospital. My world has been turned upside down since then…I was gaining 10-12 pounds of fluid WEEKLY…finally when I went to Mayo Clinic my first visit in 11/07, they felt the Cushing’s was related to the steroid’s I was on-which was not a high dose, to try and decrease all the swelling-no one thought could pin point why I had so much fluid retention-this was about four months from when I first became ill and I know was 195 pounds!

I returned again to Mayo 1/08 and then again 4/08….in April of 2008 it was an urgent visit-I had been passing out DAILY in my condo in Grand Rapids, MI-two hours from my family-my friends would find me-or I’d wake up fallen on the floor, etc-my internist had me come immediately to Mayo-I was set up with a leading Endocrinologist at Mayo and within 24 hours I was diagnosed with Cushing’s Syndrome and Adrenal Insufficiency-my Urine Cortisol and ACTH stim test were awful. I was put on Replacement Hydrocortisone (At this point I had been off ALL steroids for five months-but continued to gain fluid-I was now 240pounds…they did a tissue biopsy-when they cut into my skin fluid came running out-they-at Mayo had NEVER seen anything like this!).

After returning from Mayo-(my father took me for the ten hour drive each time, we would be there about 8 days-he was such a rock for me as I had always been the independent child in the family…now I needed help-and that was hard to accept). I forgot to mention at this point I was developing many skin rashes, my hands looked like they had been chemically burned all the way up to my elbows….I had allergy/PATCH testing done-found out I was literally allergic to almost everything in the environment-All preservatives in medicine, formaldehyde, lanoline, rubber, adhesive, all chemicals, fragerances-even toothpaste, makeup, it was unreal!

Five days after returning home-I ended up in the hospital in GR-I had a secondary cellulitis/bacterial infection with fever on my hands and arms-I was put on IV antibidics …unfortunately the “hospitalist” I was assigned (In Michigan your internist doesn’t round on you-you are assigned a hospitalist to take care of your inpatient care)…anyways-he didn’t believe I needed to triple my steroid dose when ill-so he refused-I fell into a coma that day! Thankfully one of my good friends, also a RN, came to visit when all th staff was trying to awake me-and my friend said, “my God-she’s in an adrenal crisis!” Once they got the Cortisol in me I was okay. But that was terrifying-I could hear everything the nurses, and medical staff was s aying and I couldn’t talk, blink, move anything-I had tried to call my internist before I slipped into the coma-but I couldn’t talk-I remember hearing the receptionist-but I coudln’t talk-they found my cell phone on the floor where I had dropped it.

it has been a hard road-i returned to Mayo 11/08……at this point I was 300 pounds-they did a full body CT, MRI’s of knee’s, etc-all my tissue is full of fluid-they honestly wre not sure what to do-they just hoped that by tryijng to wean down on the steroids my body would start making aCTH and “Cortisol-I brought intormation on the Rare disease Program at the NIH-my internist at Mayo and in Grand Rapids, MI referred me-I also sent a letter with photo’s. I kept a photo journal from the beginning of my journey-taking photo’s of my striae, abdomen, buffalo hump, arms, legs, abdomen, and SEVERE fluid retention – I took these photo’s monthly so the doctor’s could see how this progressed-this was one of the most helpful things I did.

Thousands are referred to the Rare Disease Program-only 50-100 are accepted. I was accepted. My father and I flew out to the NIH May 17th and returned May 22nd. They paid for our travel, all hospital charges, and lodging for my father at the Safra Lodge there on the NIH campus.

I met the guru of Cortisol-Dr. Nieman-she was incredible. It was an amazing experience to be there-like Mayo-their philosophy is “we are here for the patient” unlike many doctor’s I had run into in Grand Rapids-I’m sure many can relate to some doctor’s that don’t even have ten minutes for you-here and at Mayo then spend 1-2 hours with you-you are their priority. It’s refreshing.

They changed my replacement steroids from Prednisone to Hydrocortisone, I’ve slowly been weaning-but I’m stuck at 10mg in the am, 5mg at 2pm, and 5 mg at 6pm. I also had many other consults while there.

Currently I have a WONDERFUL internist in Grand Rapids-I had to change doctors 2/08-I had been with a family practice doctor and this was just way out of his expertise, I also have a wonderful Urologist, Dr. Casamento whom has been my urologist for over ten years-he has been SO kind and helps me handle my Interstitial Cystitis.

Other than that I have transferred my care to Univ. of Michigan. I have the Chief of Endocrinology at U of M as my Endocrinologist-he is awesome-so intelligent-and he works with the NIH and my internist to help formulate a plan.

I also have a wonderful Rheumatolgosit at U of M- I have a lot of damage to my knee’s-and as I said-my weight is now at 300 pounds-they say over 50% is fluid-and you can tell-my skin is SO taught, nothing is flabby….I’ve been on so many diuretics-nothing helps-next step is to see nephrology at U of M.

They Cushing’s Syndrome symptoms are hard to deal with-you have to learn to adapt-the abdomen, the buffalo hukp, the stria-I look just like the diagram on your website-I had to cut my hair very short as I was sweating ALL the time-another bad side effect. I have had to go from being able to live in my third floor condo-to moving home to my parents-I can’t do stairs anymore-I do PT exercises daily at their home-I have to use a walker at all times, I also have to sleep upright-as my abdomen is SO distended if I like even at a 45 degree angle I feel like I’m suffocating. I PRAY for a miracle-the NIH and Mayo had NEVER seen someone with such severe symptoms of Cushing’s. They now are not sure if I have primary or secondary adrenal insufficiency.

In the meantime I have some major damage and arthritis in my spine/knee’s ankles-but I’m not a surgical candidate per my ortho doc….he’s just doesn’t know how to help me.

I think the hardest things for me are just ADL’s (Activities of Daily Living) shower, even using the bathroom, hygeine, etc….and still not allowing anyone to help me-I’m stubborn that way-but the worse the abdomen distends, the worse the fluid gets-the harder it is for me.

Thankfully I have so much loving support from family and friends-but qualify of life is so low. I no longer get out of the home-it’s too hard-and the stares I get from people, and the laughs because of the Cushing’s is hard….I had been getting my groceries using an Amgio cart-but now that I’m living with my parents they take care of that.

Thankfully I had no problem getting disability-but COBRA and my medical bills have taken my entire savings. My church family even pays every other COBRA-but at 540.00 a month-plus all my other bills/mortgage, etc-it’s been a devestation financially.

I wish everyone with Cushing’s the best of luck-just know you are NOT alone. My faith has sustained me in hard times-I can’t imagine not having faith to get throgh this.

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Holly (Zeus218) Steroid-Induced Bio

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Hi.., I am hoping not to confuse you all with my roller coaster history.

I have exogeneous Cushings which was close to impossible to diagnose.

In the past few years I suffered from the symptoms of cushings, celiac and hyperthyroidism.

Unfortunately all have autoimmune symptoms and I had everything at once. Like most or all of you I was fit and athletic but even as far back as 10 yrs. ago I wondered why I gained weight before or during summer. We are not talking about a lot of lbs. then just ten lbs. I then had to work hard in the summer to get it off.

Six yrs ago I was diagnosed with hypothyroid so that seemed to explain the weight gain but the thyroid medicine made me sick and over time I would test sometimes as hyper then hypothyroid. Sometimes I would test with both at once so I basically went untreated as no one understood it. Three years ago I gained 72 yes 72 lbs in one 3 day weekend while traveling.

My thyroid was out of control and I felt likeI was having a heart attack. I went to a well known hospital to an endo because there were no endos in my area. They figured out what my thyroid problem was and said that the nodules has been skewing the tests. I told them about all of my other symptoms that didn’t make sense and they felt that I had more than one thing going on.

At this time they were testing for high cirtisol but it was actually low. I had significant bruising then, paper thin skin, lack of muscle and all symptoms other than striae. They did a total thyroidectomy and recovery went well. I was not supposedto take thyroid meds until heart palps went away because I was hyperthyroid they said I would have excess thyroid retained in body for a few days. You can imagine how bummed I was when I stillfelt sickly. I went home gained another 52 lbs a month later and became much sicker.

That summer Celiac was diagnosed and all of those immune system symptoms disappeared when I went super strict gluten free. By this time I was eating nothing and was sick all of the time. I was diagnosed with mono (Dr’s were surprised and didn’t believe at first) and basically slept for 4 mos.

I had been getting allergy hayfever injections annually for 29 years but my Dr retired so I went to a family Dr to get the injection. This shot worked well for severe hayfever and was given in another town. The Dr called another allergist who said that I could not have the shot because it caused weight gain and Diabetes. You should have seen my face when I was pointing to my very sicck body! I went home and read the website about the shot and sure enough it causes Cushings. I think I basically slipped through the cracks.

The last two shots were administered by a triage nurse and then the doctor had retired. I always assumed that the endo had seen those injections on my medical records as I had signed a paper having them sent to my medical records before the Dr retired. The medical records from that Dr never transferred.

The scary thing is that I had the shot one month after a thyroidectomy which caused the 52 pound weight gain. The weight gain that I always got in summer was delayed and never showed at the time of the shot. The Dr was a conservative and good Dr and never broke protocol administering the annual shot once annually but you could repeat one half of the shot once a summer which I sometimes did. When he did see me towards the end I told him I was going through a thyroid problem which I was!

The real problems happened when I was refused the shot. I was traveling and when through major steroid withdrawal and had no idea what was happening. I was the sickest at this point and ended up several times in the ER thinking that I was having a heart attack. The cardiologists felt that my symptoms were classic adrenal insufficiency. I would sleep fully clothed thinking I would end up haviing to go by ambulance to the hospital. The hospital (endo) was able to track the retired Allergist down and he called me in October , 5 mos. after I was refused the shot. He said had he still been seeing me he would have definitely tapered me since I had been on steroids for 29 yrs. i had all symptoms but not stiae. The emotional mood swings were gone right away and overnight the 500 lb person that was sitting on my heart when I had AI vanished. The very next day I could walk 7-8 mles after barely walking across the room the day before. My question is withexogeneous Cushingsshouldn’ the weight be coming of nowthat I am 8 mos steroid free?

Had I gained this weight on my own I would know what to do to lose it i.e cut out desserts etc. i have such a restricted and disciplined diet anyway so it makes it hard to do more.

I am exercising daily, just walking, taking Metformin, 1000 mg although I don’ t have Diabetes and taking Vitamin D supplements. Am eating protein and veggies, no sugars. I am taking a low dose of estradial and progesterone due to going off the pill and am 55 yrs. old.

A veterinarian who treats this often in dogs said that they use a reversal drug. Do they have anything to speed up recovery? The steroid injections that I was given were so strong they were taken off a crash cart and have been outlawed in the UK for none lifesaving use. It seems like it will take awhile for me to be less”foggy”.

There has been little info on medicine-induced cushings and it always seems like once you stop it will reverse. I have only lost ten lbs. since June. The Dr.s said I am lucky I was hyperthyroid and celiac at the same time or I could havegotten a lot bigger.

I should have been emaciated without Cushings. Is there such a thing as a steroid therapist? Thanks although I am so grateful to feel better I am left with all the damageand yes looking like a troll. Thanks for listening!

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Mary H (Marietta), Adrenal Bio

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In 1976, I was (finally) diagnosed with Cushing’s disease and after the up the nose surgery, which was ineffective, I had bilateral adrenalectomy.

It all started in late 1974, when I started having lots of illnesses and was depressed.  I was crying a lot and going back and forth to my doctor, who treated every illness and gave me anti-depressants.

Then the weight gain started, ( I was 185 at my highest, which was usually 115-120) actually I had been gaining weight, but by now it was rapid and uneven– only my trunk and face.

All through late ’74 and 1975, I was back and forth, even with a dx of pregnant,  (which made evryone happy, as I was married Feb 1974.  But the mental problems continued, I was under psychiatric care and had 2-3 in-patinet stays of about 2 weeks.  Each time, after the observation and evaluation, I was discharged with no dx. I would also fall asleep at the strangest places and times, all very suddenly.
In March of of 1976, I  had what was then called a “nervous breakdown,” so again I was hospitalized.  THAT probably saved my life, as it was my psychiatrist who finally dx Cushing’s and decided on treatment. He later told me that I had him very confused, as each time he thought he had the DSM dx (he knew I was in the mh field), I would change and thus, he could not fit me in any DSM DX.   Then, because of my appearence (moon face, foot-ball player shape, with skinny limbs, losing my hair and all the secondary dx (high blood pressure, insulin diabetes that could not be controlled– up, down, up down, losing hair, on my head but growing on my face and back), he said he remembered something from medical school.

He did a lot of research, ordered a lot of tests and VOILA– I had Cuhing’s disease.  It was very rare and at that time, he said there were no more 300-400 (known) cases in medical history; also, I was the youngest dx at 26, because most cases were in those age at least 50.

I had the nose surgery, very new at the time,  but it didn’t “work,” so I had to have my adrenal grand removed– they were 5x the normal size and producing 25x the normal amount of steroids. I had the surgery in Novemver 1976, which took from 7 am to 5 pm (I have the 2 long scars on my back).  I did not know at the time that there was an 85% chance of surviving that surgery.

Post surgery, all but 3 of my fingernails fell off, my hair was in tight curls (previoulsy straight) and I had cystic acne on my face, neck and back. I started taking cortisone and florinef and was told I had to take  it the rest of my like.  I was under close dr care for about a year, and by April 1977, the weight was gone (I was back to 115) and all secondary symptoms were gone.  I believe that the surgery was a real “cure” for my Cushing’s disease and after, it was/is maybe somewhat like diabetes, in that it is managed and controlled.  There are some things that I have to watch carefully, like a comprommised immune system (increase the prednisone if infection seems likely) and some depression (never hospitalized again).  I have had some adrenal crises, that landed me in the ER, maybe 5-6 over the years (how strange, no doctor ever told me or gave me a prescription for an injection for such occurences).
In 1990-1991, I had what ended up being appendicitis.  After 4x in the ER, I vomited blood and collapsed.  It turned out to be a (dead) grangrenous appendix, which should have been removed the first t ime.  Supposedly, the prednisone that I take “masked” the symptoms and since my blood showed no infection, I was sent home from the ER each time.  I spent 2 weeks in the hospital with 3 strong intravenous antibiotics to remove all the toxins in my body that almost killed me.

In 2000, I was dx with diabetes, which runs in my family, and at  64 years  old, the problems I have now are severe allergies/sinus problems (no one believes that I am sick when this makes me sick) and I seem to always be hotter or much colder than anybody (which the doctor warned me about right after the major surgery).

Also, I started out with cortisone; in 1990, a new doctor in NYC gave me hydrocortisone and I gained 10-20 lbs.  Another doctor quickly put me back on cortisone and said that the hydrocortisone was only for injections when I have adrenal crisis– it is quick actiing.  The cortisone was 25 mg daily and around 1993-94, I started gaining weight.  A new docotr in Chicago, switched it to prednisone 5mg., the equivalent of the 25 mg cortisone.  He said the prednisone did not cause weight gain– he was right.  I also take Florinef, now Fludrocortisone (the generic, Florinef is VERY expensive, as is the generic, but less).  I started out with this at .1 mg  once every other day and sometime in the 90s, the same dr who put me on prednisone, changed the Fl to one x daily.

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In Memory: Kate Myers

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kate-fb kate

 

Kate (Fairley on the Cushing’s Help message boards)  was only 46 when she died on June 23, 2014.  Her board signature read:

After 2 failed pit surgeries and a CSF leak repair,
BLA on Sept. 11, 2008 w/Dr. Fraker at UPenn
Gamma knife radiation at UPenn Oct. 2009
Now disabled and homebound. No pit, no adrenals and radiation damage to my hypothalamus.
My cure is God’s will, and I still have hope and faith!

During her too-short life, she provided help and support to other Cushies.

Her National Geographic video in 2007

Her BlogTalkRadio Interview in 2008: http://www.blogtalkradio.com/cushingshelp/2008/07/17/interview-with-kate-fairley

Articles to help others:

Kate’s Family Letter
Kate’s Packing Suggestions For Surgery
Kate’s Pituitary Surgery Observations

Kate’s bio from 2008:

Hi y’all! I will try to make this short, but there is a lot to say.

I stumbled across this board after a google search last night. Yesterday, I finally saw a real endocrinologist. I am 39 years old. I weigh 362. I was diagnosed by a reproductive endocrinologist with PCOS at age 30, but all of my symptoms started at age 22.

At age 22, I was an avid runner, healthy at 140-145 pounds and 5’7″. I got a knee injury and stopped running right around the time that my periods just….stopped. And by stopped, I mean completely disappeared after mostly regular periods since age 12. I was tested by the student health clinic at UGA, and referred to an obgyn for lap exploration for endometriosis, which was ruled out. I remember that they ran some bloodwork and ultimately came back with this frustrating response: We don’t know what it is, but it’s probably stress-related because your cortisol is elevated.

Soon thereafter, I gained 80 pounds in about 6 months, and another 30 the next six months. Suddenly, in one year, I was 110 pounds heavier than my original weight of 140. I recall my mom and sister talking about how fast I was gaining weight. At the time, I blamed myself: I wasn’t eating right, I’d had to stop running due to the knee injury and my metabolism must have been “used” to the running; I was going through some family problems, so it must be that I’m eating for emotional reasons related to depression. You name the self-blame category, and I tried them all on for size.

Whatever the reason, I stopped avoiding mirrors and cameras. The person looking back at me was a stranger, and acquaintances had stopped recognizing me. A bank refused to cash my security deposit refund check from my landlord when I graduated because I no longer looked like my student ID or my driver’s license. I was pulled over for speeding while driving my dad’s Mercedes graduation weekend, and the cop who pulled me over almost arrested me for presenting a false ID. These are some really painful memories, and I wonder if anyone here can relate to the pain of losing your physical identity to the point that you are a stranger to yourself and others?

Speaking of size, from age 24 to 26 I remained around 250, had very irregular periods occuring only a few times a year (some induced), developed cystic acne in weird places, like my chest, shoulders, buttocks (yikes!), found dark, angry purple stretch marks across my abdomen (some of which I thought were so severe that my insides were going to come out through them) which I blamed on the weight gain, the appearance of a pronounced buffalo hump (which actually started at age 22 at the beginning of the weight gain), dark black hairs on my fair Scottish chin (and I’m talking I now have to shave twice daily), a slight darkening of the skin around my neck and a heavy darkening of the skin in my groin area, tiny skin tags on my neck. I was feeling truly lovely by graduation from law school and my wedding to my wonderful DH.

At age 26, I ballooned again, this time up to 280-300, where I stayed until age 32, when I went up to 326. The pretty girl who used to get cat calls when she ran was no more. She had been buried under a mountain of masculined flesh. I still had a pretty, albeit very round, face, though. And I consoled myself that I still have lovely long blonde hair — that is, until it started falling out, breaking off, feeling like straw.

At age 30, I read about PCOS on the internet and referred myself to a reproductive endocrinologist, who confirmed insulin resistance after a glucose tolerance test. I do not know what else he tested for — I believe my testosterone was high. He prescribed Metformin, but after not having great success on it after 5-6 months, I quit taking it, and seeing him. Dumb move.

Two years later, at age 32, I weighed 326. In desperation, I went on Phentermine for 3 months and lost 80 pounds the wrong way, basically starving. I was back down to 240-250, where I remained from age 33-35. After the weight loss, I got my period a few times, and started thinking about trying to have a baby. Many ultrasounds per month over a few months revealed that I just wasn’t ovulating. I decided to put off starting the family when the doctor started talking about IVF, etc. It just seemed risky to me — my body, after all, felt SICK all the time, and I couldn’t imagine carrying a baby and it winding up to be healthy.

At age 35, I ballooned again, this time significantly — from 240 to 320 in the space of 6 months. Another 45 pounds added by age 37, so that’s 125 pounds in two year. I’ve remained between 345-365 for the last two years, depending on how closely I was following my nutritionist’s recommended 1600 calorie per day diet….which was not all the time.

Which takes me to last year. I went for a physical because I wasn’t feeling well, kept getting sick, had a lot of fatigue, weird sweating where my hair would get totally drenched for no reason. At this point, I was diagnosed with high blood pressure, hypothyroism (which has now been modified to Hashimoto’s thyroidis), high cholesterol (although this was present at age 30 when I got the PCOS diagnosis). I went back to my repro-endo, and resolved to make myself stay on Metformin this time. All last year was a series of monthly blood work and attempts to lose weight with an eye toward trying to get pregnant this year. By the end of the year, I was successful in taking off only 20 pounds, and my repro-endo (always with an eye toward fertility and not health), really pushed me to give up on losing weight at that moment and to start taking Clomid. Or else, he said. The words that broke my heart: this may be your last chance.

So, skip forward to January 2006. My ovaries are blown out and they are clear — no blockages. I get cleared to start fertility treatments. My husband undergoes his own embarrassing tests. I think we have an agenda here, but my mind was chewing on serious concerns that I was simply too unhealthy to be considering trying this. That, and I felt it would be a futile effort.

By the way, more than a year on the Metformin with no real changes to anything. Why doesn’t my body respond to it like other people with PCOS?

Then late March, I started experiencing extreme fatigue. And I’m not talking about the kind where you need to take a nap on a Sunday afternoon to gear up for the week ahead (which I’d always considered a nice indulgence, but not a necessity). I’m talking debilitating, life-altering fatigue. It didn’t start out right away to be debilitating — or maybe I just made the usual excuses as I always do relating to my health: I’m still getting over that flu/cold from last month. I just got a promotion at work (though I note a greatly reduced stress and caseload now that I am a managing attorney. My weight is causing it. Whatever.

I let it go on for a full two months before I started to really worry, or admit to myself that my quality life had taken a serious downward turn. You see, despite my weight and my scary appearance, I have always been the “director” type. By that I mean that last year, I worked with two other women to direct 100 volunteers to start a summer camp for inner city kids, and I had enough energy to run this ambitious new project and to film, produce and edit a 30 minute documentary on it by the end of the summer.

In contrast, I had to take a backseat this year. I basically sat in a chair and answered the questions of volunteers, made a few phone calls here and there, and was simply a “presence” in case something major went wrong. Such a major change from the year before, where I was running the whole show 14 hours a day and loving it.

But I am getting ahead of myself. (Is anyone still reading this? I must be narcissitic to think so….yet, I wonder if anyone else has gone through a similar progression….)

Back to May. After two months of this fatigue, I change to a new primary care physician and get a whole workup: blood, urine, thyroid ultrasound, cardiac stress test, liver ultrasound when my enzymes, which had been slightly elevated, were found to have doubled since January. Appointments with a gastroenterologist, and FINALLY….a REAL endocrinologist. Ruled out any serious liver problems (and my levels, surprisingly, dropped back to the slightly elevated level in a space of 3 weeks and no treatment).

Yesterday, I heard a word I’d only heard spoken once before in my life: Cushings. Way back when I was 22 and had started gaining weight so rapidly, I had a boyfriend who worked the graveyard shift at the local hospital. He spent the better part of a non-eventful week of nights pouring over medical books in the library. He excitedly showed me the pages he’d photocopied, which had sketches of a woman with a very rounded face (like mine), striae on her stomach (like mine), abdomenal obesity (like mine) and a pronounced buffalo hump. Although my former boyfriend was just a college student working his way through his music degree by earing some money moonlighting as a hospital security guard, he was the first one to note all of these tell-tale signs.

When I got my diagnosis of PCOS, I remember discounting his amateur diagnosis, and I never thought of it again.

Until yesterday, when my new endo asked me if anyone had ever tested my cortisol or if I’d ever done a 24 hour urine test. I said no, and he started writing out the referral form along with like 15-20 different blood tests. And although we’d started our appointment with him telling me he agreed with my repro-endo’s encouragement to go ahead and try to get pregnant if I can, by the end of the visit, he was telling me not everyone is meant to be a parent, there is always adoption, etc. The only thing that happened during the appointment was that I gave him my basic history of weight gain, described the fatigue, and let him examine my striae, buffalo hump and legs (which were hidden under a long straight skirt). The question about the urine screen and corisol came after this physical exam, during which he was taking lots of notes.

Then the word, which was not spoken directly to me but to his nurse practioner as I was making my two-week appointment in the reception area outside the examining room: “She looks classic Cushings. I’ll be interested to get those results.”

Cushings. Cushings. No– that’s not me. I’m not that weird-shaped, hairy, mannish-looking, round-faced, hump-backed creature my boyfriend had shown me a picture of 16 years earlier. I have PCOS, right? It’s just my fault. I don’t eat right. If I’d just eat better, I wouldn’t be 2.5 times my weight in college. Right?

I quickly came home and did an internet search. Within an hour, I was sitting in front of the computer, reading some bios here and BAWLING, just crying some body-wracking sobs as I looked at the pictures of the people on this board. Here, here (!!!!) is an entire community who has the same, wrenchingly painful picture-proven physical progression that I went through. The same symptoms and signs. Words of encouragement — of….hope. I didn’t feel scared to read about the possibility of a pituitary tumor — last year, I had a brain MRI of the optic nerve because of sudden vision irregularities, headaches and shooting eye pain. The MRI showed nothing, but then again, the image was not that great because I had to go into the lower-resolution open MRI due to my size.

I have no idea whether I have Cushing’s Syndrome or not, but these are my first steps in my journey of finding out. After living my entire adult life with an array of progressive, untreatable, brushed-off symptoms (and years of self-blame for depression, obesity, becoming so unattractive), there was a major “click” as I read this site, and a sense of relief that maybe, just maybe, what I have has a name, I’m not crazy/fat/ugly/lazy, the PCOS diagnosis, which has gotten me nowhere is incorrect, and I might have something TREATABLE.

So, without going so far as to say I hope for a diagnosis, I am hopeful for some definitive answers. If my urine tests are inconclusive (and my doctor only ordered one and no serum cortisol tests), I am going to fly out to L.A. and see Dr. Friedman for a full work up.

And, I’ll keep you posted.

Thank you for posting your stories, which have encouraged me to advocate for myself in a manner and direction, which this time, may be fruitful.

Be well, my new friends,
Kate

p.s. I will post some pictures this week after I scan some of the “after” one….I try to avoid the camera at all costs. I’m sure you understand just what I’m talking about, and for that, I am truly grateful.

 

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