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Suzanne (Suzanna), Undiagnosed Bio

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Hi all,
Looking for some knowledge as I feel like my GP had been really unhelpful over this.

So I went to see him for some infected bites a few weeks ago. It’s really difficult to get an appointment with him so while I was there I figured I would mention my water retention. I’ve suffered with this on and off all my life (I’m 35) but lately it’s been a lot worse. I suspect my contraceptive pill, it’s called Yasmin (Yaz) and I’ve only been taking this particular one for about 18 months.

He sent me for a full blood MOT (vintamns, full blood count, liver function, thyroid, iron, etc etc, there were about 10 altogether).
The results of these came back and all were fine except the Cortisol level. I knew what this was because I’m a dog trainer/behaviourist and in dogs, Cortisol is referred to as the stress hormone. GP said a normal morning level was between about 166-507….mine came back as 1023!

He ordered a repeat Cortisol blood test and a 24 hour urine test. I’m still waiting on the results of the urine test but the second bloods came back yesterday at a level of 798. Obviously still very high, although lower than the first time. He says it’s likely I have Cushings. Cue massive panic as Cushings is very common in dogd and I have cared for a lot with it and it really isn’t very pleasant in dogs ūüė¶

GP says it’s caused by a tumour and I will have to have medication and/or an MRI scan and possibly brain surgery. I seriously do not fancy this when my only complaint is water retention!!

I do have quite a busy life, I work as a dog trainer and also run around after a five year old. I’m a naturally stressy person too, and worry excessively about things that don’t really need to be worried about.

My GP, when asked whether this could be caused by my pill, said no. But the other symptoms I get with this pill are occasional heart palpitations, mood swings, a feeling of buzzing sometimes, like adrenaline is coursing through me (I’ve always thought it was the estrogen?!) and increased appetite for sweet things and wanting to eat junk all the time.

My Herbalist is almost certain this pill is causing my hormone problems and is responsible for the high Cortisol levels. So I’ve decided to stop taking it for a couple of months and ask for a repeat test and see if it has made any difference. My Herbalist has also recommended Hemaplex and something called Ashwanganda.

My GP’s current plan of action is ‘wait for the 24 hour urine test results and then refer to one hormone specialist or another’.
Does anyone have a similar experience that could help me? Many thanks in advance ūüôā

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In Memory: Deloreese Daniels Owens

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in-memory

March 16, 2002

Deloreese Daniels Owens, daughter of “Touched by an Angel” star Della Reese, was found dead at her Los Angeles-area home Wednesday. She was 41. The cause of death was not disclosed, but Owens suffered from a pituitary dysfunction that made her prone to infections.

From 2002:

“Touched By a Pituitary Tragedy”

Actress Della Reese has spent the last eight years starring on the hit TV series “Touched by an Angel.” But earlier this year Reese, 71, was touched by tragedy. In March, her 42-year-old daughter, Deloreese Daniels Owens, died from complications stemming from pituitary disease. Owens left behind two children, ages 19 and 21.

Understandably, Reese has been too distraught to discuss her death, but in an interview with the Pituitary Network Association member and author Ken Baker, Reese talked about the painful experience, sharing her frustration with the lack of awareness and knowledge of pituitary disorders. “When it happened, I thought, ‘It’s such an odd thing to die from,’ because pituitary problems aren’t something you hear about,” Reese said. “It makes it harder because you don’t understand what happened. It seemed so strange and hard to explain. It still is, to be honest.”

Reese said that her daughter’s pituitary gland — the body’s “master gland” — had begun malfunctioning about six years ago. Her Los Angeles-area endocrinologist prescribed various medications, but, still, the gland’s functioning was severely impaired. She continued with hormone injections and other drugs. “She had been treating it for some time,” Reese said. “It seemed fine and the medication seemed to be enough.”

But Reese said her daughter’s death came suddenly this spring soon after her daughter caught a cold. “Her gland stopped — period,” she said. “As you know, when the gland stopped, her immune system stopped too.” Reese believes strongly that the public must have more information about pituitary disorders. She praised Ken Baker for his 2001 book, “Man Made: A Memoir of My Body,” in which he told the story of his battle with a prolactin-secreting pituitary tumor. Reese also applauded the educational outreach efforts of the Pituitary Network Association, which has helped thousands of patients and their loved ones cope with pituitary disease. “People need to know more about the pituitary,” she said. “It is so important.”

Despite the tragedy, Reese, an accomplished gospel singer who has moonlighted as an ordained minister since the late 1980s, has found spiritual peace with the loss of her daughter. “She was in a very good place in her life,” Reese said. “She was happy. She had established a relationship with God. It wasn’t a good time for me, but she was at a good place when she left.”

Survivor’s parents organize charity bike ride for Children’s Hospital neurosurgery

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La Ca√Īada resident Taylor Winter was just 12 when she was diagnosed with Cushing‚Äôs disease, a condition caused by a tumor on the pituitary gland that affects everything from organ function and sleep to hormone levels and body growth.

Although she’d likely lived with the ailment for years, once it was discovered by an endocrinologist, Taylor’s family had to act fast to remove the tumor. That’s when they were referred to Children’s Hospital of Los Angeles’ neurosurgery division, according to mom Gaia Winter.

‚ÄúWe met with neurosurgeons to see what her options were, and eight days later she was in surgery,‚ÄĚ Winter said, recalling the two surgeries it took to remove Taylor‚Äôs tumor.

Today, Taylor is an 18-year-old freshman studying theater arts at North Carolina’s High Point University. Her life may not be perfect (she still endures complications from her condition and surgeries) but she knows it’s better than it would have been had the tumor gone unchecked.

‚ÄúI was not in a happy place before I got treatment, and I think it would still be that way today if I had gone undiagnosed,‚ÄĚ she said in an email interview.

This Saturday at 11:30 a.m., Gaia and husband Wade Winter are hosting a charity bike ride at the indoor cycling studio SoulCycle in Pasadena to raise money for Children‚Äôs Hospital‚Äôs Neurosurgery Ambassadors group. The group comprises former brain surgery patients and their families who wish to ‚Äúpay it forward‚ÄĚ by raising funds for the neurosurgery division.

For a $75 donation, participants can reserve a bike and take a 45-minute stationary bike group ride, although cycling is not mandatory, Gaia Winter said. The money raised will help sponsor neurosurgery fellow Dr. Judith Wong, who will take her training to a town where skilled neurosurgeons are few.

Michael Sampiano, director of the hospital’s Ambassador groups, worked with the Winters and another family to create the program in 2012. So far, the neurosurgery division has received $14,000 from the efforts of that group. Both Taylor and twin sister Alissa are junior ambassadors in the program.

‚ÄúThe money this group raises covers the training and living expenses of our pediatric neurosurgery fellow (and) it gives our neurosurgery division the financial backing to continue its work,‚ÄĚ Sampiano said, encouraging locals to join in Saturday‚Äôs ride. ‚ÄúIt is indeed an investment in the community and for kids in the future who might be in need of this life-saving work.‚ÄĚ

Taylor says she was lucky to have such a skilled facility so close to home and recalls her time spent at Children’s Hospital positively.

‚ÄúEven though I was in pain or discomfort for the majority of my stays, the hospital staff and various volunteer groups‚Ķ helped create such a fun and caring environment that I didn‚Äôt want to leave,‚ÄĚ Taylor said.

The Winters, along with other patient families, hope to raise $100,000 this year for the neurosurgery division through the Ambassadors group. It’s the least they can do to give back, after being given so much, Gaia Winter says.

‚ÄúThey gave her the ability to be a normal kid,‚ÄĚ she said. ‚ÄúWe just feel passionate about giving back to them. The amount of work they do and the lives they touch is tremendous.‚ÄĚ

 

What: Charity Ride for the Division of Neurosurgery

Where: SoulCycle, 140 S. Lake Ave., Pasadena.

When: Saturday, from 11:30 a.m. to 12: 30 p.m.

Admission: A bike reservation cost $75 but all donations will be accepted.

More info: Visit http://support.chla.org/pages/thewinterfamily or email NeuroAmb@gmail.com

Catherine B, Pituitary Bio

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I’ve had random symptoms off and on for years (almost two decades now, from about the age of 15) but didn’t realize they were related to illness, or that I had one overarching disease causing them all.

Looking back, the onset of my disease was in my teen years.¬† I gained more than 60lbs in roughly a year’s time without changing diet or activity level.¬† I developed stretch marks that ran from my knees to my elbows (and everywhere in between!).¬† I started losing my once-thick hair.¬† I developed horrible acne.¬† I went from being an early morning riser to staying up late at night because I was wide awake, and waking often throughout the night.¬† I went from being happy overall to being anxious and depressed for no apparently reason (and medication had no effect on either).¬† I was told it was either all in my head or all my fault (by varying people, some directly, some implied) and I internalized that and just assumed I was too lazy and had bad genetics…¬† I TRIED to exercise but would feel so sick afterwards that I couldn’t make any gains, I joined a gym and put myself on a diet in high school but none of it made any difference.¬† When I brought up my symptoms to doctors, they could never put it together, often blamed me for them (Just diet and exercise and it’ll go away), and sometimes treated me like I was just plain crazy.¬† I still don’t go to doctors unless I have to because of those experiences.

After getting married, I had had some complicated pregnancies…but it was more than that.¬† I would get flank pain and drop into “lows” that I didn’t understand, complete with feeling cold, diarrhea, weakness, exhaustion, nausea, loss of appetite, and extreme weight loss (muscle loss, more like it).¬† I had high cardiac output but low blood pressure and a high pulse rate.¬† I’d go into tachycardia (140 bpm¬†+)¬†for NO apparent reason and had all kinds of cardiac monitoring done.¬† My blood pressure was labile, but usually low, and still I’d end up with severe complications. Breastfeeding wasn’t going well despite the “mechanics” and flow being there…my babies were never satisfied and I always felt sickly.¬† The differences were drastic (but a bit graphic to share here publicly).¬† I seemed to get pregnant at the drop of a hat (opposite of the norm for Cushie women), but my body seemed unable to deliver on it’s own.¬† My body just didn’t react like it should to anything.¬† I even once had an episode post-partum that now I know was likely some mixture¬†of adrenal insufficiency and/or my hypoaldosteronism.¬† I was left alone to sleep it off (just thinking about it now scares me), but I didn’t know any better at the time.

Then about 3-4 years ago I hit this point where I just had the feeling that if I didn’t get whatever was¬†going on under control, I’d end up with something more permanent and dangerous (like cancer or diabetes).¬† I still got seemingly random symptoms but I had too many of them, and they were getting worse.¬† I also started to notice that my good days and bad days seemed to come in cycles.¬† 3 days, 3 weeks…I’d be good for a while, then worse for a while, then good for a while.¬† I had already eaten “clean” and kept myself active, so I decided to try “nutritional balancing therapy” and started taking a karate class multiple times a week (burns TONS of calories, fyi).¬† They ran some tests for various vitamins/minerals, and said I had adrenal insufficiency.¬† The diet I was put on was a higher fat (good fat), higher protein, TONS of veggies diet (basically we just cut out my grains/starches and added in more fat) but between the diet and the exercise, I became so ill I couldn’t get off the couch for about 4 weeks.¬† I had to give up both and it took some time to recover, but I never got back to where I had been, not even close.

I started studying the natural healing term¬†“adrenal fatigue” and came to the realization that I had done everything to correct AF but was still going downhill.¬† I had tried supplements, diet (years of it), everything.¬† I became pregnant unexpectedly and was active, even tap-dancing with a major part in a musical at 20 weeks pregnant.¬† I would have these ups and downs that seemed random, but when I finished the musical, I hit a new low and never seemed to come back from it.¬† I just became more and more exhausted.¬† To the point that certain days I could *feel* the energy it took to hold my head up to watch a movie with my kids.¬† The CNM and OB both said I was just depressed and upped my dose of Vitamin D.¬† They wanted me to go on antidepressants, and I refused.¬† I knew the difference between not wanting to do things and not being able to do them. I called a doctor that specialized in Adrenal Fatigue in California after having read through his website, and he basically said that I would continue to get worse, but that he wouldn’t treat me because of my pregnancy.¬† No help, no suggestions, he told me “come see me if you make it out alive.”¬†¬†I obviously needed outside help from a true expert.

I had joined an Addison’s support group online about this time, and they helped me learn a lot about AI and Addison’s, about symptoms, testing, about Hashimoto’s, etc.¬† I am SO grateful to these women who supported me and taught me much.¬† They never questioned if I was just depressed or if I was really sick, and they were so kind they WERE the sanity that I needed so desperately.¬† I was getting nowhere with local doctors, my husband believed me and was as helpful as he could be, but it was taking a big toll on us, and when we asked for help from our local church leaders with cleaning our home because I no longer could do it (and my husband was so overwhelmed doing everything by himself), we were threatened as a family and refused help.¬†¬† I¬†was desperate; I was hurting.¬† My whole family was struggling¬†because of this disease and the treatment (and lack thereof) we’d received from doctors and so-called friends.

These Addisonians had been talking a lot about one specific endocrinologist that specializes in pituitary disorders (who also happens to be in California).¬† In complete desperation, I emailed him, knowing the chances that he’d take me or that I could even get in to see him before delivery (due to travel restriction based on gestation) was unlikely.¬† But I was scared of what a delivery with untreated Addison’s might bring (I knew the stats and knew I didn’t trust the local OB), so I emailed explaining my situation and sent my current lab work (I had to go to my GP because my OB wouldn’t even test my thyroid or iron!).¬† I knew it sometimes took weeks to get a response or get in to see this doctor 3 states away, but I sent the email on February 8th, and heard back via email that same night from his office lady.¬† She was sure he could help me, and suggested I schedule an appointment right away, and was waiting to hear back from him directly.¬† He responded that he did see something amiss in my lab work, and I was scheduled for an appointment and buying plane tickets.¬† My appointment was on Valentine’s evening and a friend flew with me because I was too weak to do it alone, and because my brain was too foggy to feel comfortable understanding and responding to everything in the appointment, not to mention I was super pregnant with my 6th child!

I went in SURE I had Addison’s Disease, or at least a form of adrenal insufficiency, and even tried to argue that fact.¬† I came out with a LOT of testing for Cushing’s Disease.¬† It was, in fact, the low cortisol periods that I was noticing, but it was being caused by periods of high cortisol.¬† You see, the cortisol takes a big toll on your body and overrides the normal feedback system of your pituitary and adrenal glands.¬† While the tumor is actively pumping out ACTH, it can shut down your own pituitary’s normal production because the pituitary feedback says there is already too much cortisol in your system.¬† Then, if/when the tumor “kicks off” (who knows why they do this), your pituitary is in a lazy state from not having been working and it can take a while for it to kick back in.¬† This can bring life-threatening lows, but generally it just brings low-cortisol symptoms which are still uncomfortable.

I was unprepared for the change in direction at my appointment.¬† I had the right system and hormones, but I was looking at it backwards, and the more I learned about cyclic Cushing’s Disease, the more sense it made, the more things clicked together, and the more I understood about my past and present symptoms. ¬†I have cyclic Cushing’s Disease.¬† I had read up a little on this about 10 years prior, when my mother-in-law had died from untreated Cushing’s (she refused treatment and was a stubborn, intelligent women who got her way).¬† I had read through some information with my husband at that time.¬† We had concluded that it was a possibility, but I didn’t have enough of the symptoms (maybe half?) and decided that I wasn’t nearly sick enough for that to be the problem.¬† How wrong we were!¬† I certainly wasn’t as bad as many, but I found that the downhill turns were often sudden and drastic, especially in the more recent years.

At my appointment I was also told I had hypothyroidism.¬† He ordered more of those tests (to get a trend) and an antibody test.¬† It was found I have¬†Hashimoto’s Thyroiditis (an autoimmune thyroid disease) and was put on thyroid medication.¬† My ferritin level (stored iron) was so low it was in single digits (he wants it around 60) and he said that had I not been flying home the next morning, he’d have had me in the hospital for IV iron infusions.¬† Needless to say, I was put on iron –lots of it.¬† My vitamin D was still lower than he’d like despite having been on treatment, so he switched me to 50K iu’s of D3 weekly (My OB had chastised me repeatedly¬†for taking D3 instead of D2; Ha ha!).

I had to wait for a while after my pregnancy to allow my body to normalize before doing my Cushing’s testing.¬† I first tested by date (randomly, basically) and got a few marginal highs, but mostly normal test results. ¬†My pituitary MRI was read clean.¬† Dr. F told me he didn’t know what was wrong, but that it didn’t look like it was Cushing’s because of the testing.¬† I was not prepared for that, and just ended the conversation in an emotional mess.¬† I was emotionally, mentally, and physically exhausted and didn’t plead my case.¬† I didn’t have insurance or the money to test more, even though I was pretty sure I needed it.¬† And looking back, had I asked, he probably would have obliged.

I decided to again try natural healing methods.¬† Nothing worked, and some things (extended juice fasting, for instance) actually made me much worse.¬† Every time I hit another “low”, it seemed to become my new normal…and that was scary.¬† I kept losing more energy and strength, more of my mental ability, and each time I couldn’t imagine it getting worse, yet it always did.¬† (I still haven’t learned this lesson!)

About a year later, after a lot of prayer and thinking, after I’d exhausted most natural treatment methodologies I felt willing to try, I realized I did indeed need to go back and push for further testing, and test by symptoms.¬† Mentally and emotionally I was in a much better place, and while I had recovered a bit after my delivery, I had started to again slide downhill despite my best efforts.¬† I came up with a game plan, and the hope of it made¬†the effort¬†required seem possible.

I emailed Dr. F to ask about further testing, this time by symptoms, and there was no pushing or arguing necessary!¬† He gave me more sensitive testing this go round, and told me to test as much as it took.¬† He believed me!¬† It was as if the way just opened up for me this time.¬† I was uninsured, but I applied for the Cushing’s Assistance program through NORD (The National Organization for Rare Disorders) and was accepted.¬† They offered to cover the costs of testing, doctor’s appointments, and travel needed for the same, that would lead to a diagnosis of Cushing’s Disease.¬† I was in public when my husband called and read me the letter, and I started bawling right then and there in the shopping isle.¬† It was an answer to a prayer I didn’t even think to voice.¬† I then called to share the news with family and friends and bawled again, scaring yet more customers!¬† Having no insurance, this¬†made everything possible.

Tracking my symptoms wasn’t a very easy task.¬† I went totally OCD on them, and still I was only somewhat successful in my efforts. I could get the overall trend, but the day-to-day was confusing as all-get-out.¬† My testing was also complicated by living in Alaska.¬† I could only turn in tests 4 days a week because they had to fly out to the labs in Seattle, WA and beyond.¬† It took about a month to get each result back.¬† Add to that a head cold that killed my cortisol levels for 6 weeks, and it took me a few months to get sufficient high labs even with my 2-page-wide spreadsheet of symptom data.

In that time, I also made friends on the Cushing’s-Help website and Facebook groups.¬† I learned a LOT of things from them, and one friend in particular likes to “read” pituitary MRI’s the way I like to “read” fetal ultrasounds.¬† She looked at my previously “clean” MRI and said that in her lay opinion, it was anything BUT normal.¬† As a favor, her neuro-radiologist also took a look at my MRI, and was so kind as to send back pictures with ARROWS of pituitary adenoma’s and suspicious areas on my MRI to forward on to my endocrinologist.¬† As it turns out, my doctor hadn’t read the disc himself and had just read the radiologist’s report.¬† He looked at the disc and agreed it was not normal,¬†then sent me a message stating I needed a new MRI (it had been over a year at this point and my previous MRI still had some of that post-partum “rainbow” shape to the pituitary) and that it should be read by a neurosurgeon this time around.¬† JOY OF JOYS!¬† This brought me even more hope!¬† He said SURGEON, not just himself…that meant I was getting so close to that diagnosis and surgery clearance –to getting help.

I scheduled my MRI trip (can’t do a 3T dynamic here), and decided to schedule a face-to-face with my endocrinologist again while in the same city.¬† NORD paid for the flights, reimbursed me for the cost of my doctor’s appointment, paid for the MRI, and paid for my hotel room.¬† My husband came with me this time, and it was the best doctor’s appointment I’ve had in my life.¬† I was still nervous that somehow it wasn’t enough, or that the MRI done the day before my appointment would miraculously have become normal again.¬† That was not the case.¬† My MRI showed two possible adenomas on opposite sides of my pituitary amongst other things, and my 7+ diagnostic-level high labs were sufficient…and it felt AMAZING!

Who knew we’d be so excited to hear I was diagnosed with a deadly disease?¬† That we’d shout for joy and clap our hands at finding multiple tumors in my head?¬† I had a smile that wouldn’t go away.¬† The medical student shadowing my endocrinologist hadn’t seen the diagnosis side, where patients are so relieved to have an end in sight, to finally be getting help and have a chance at getting better, that they are happy!¬† I also wore my “Does my pituitary gland make me look fat?” shirt to this appointment, so we were joking, taking pictures, and having a grand old time.¬† He gave me permission to share the picture of us, and without prompting pointed to my head for the next picture saying, “It’s right HERE!”¬†¬†My endocrinologist¬†is generally stoic, quiet, caring yet professional,¬†dealing with very ill people with a very serious disease and he is often their last hope at life…so I feel myself privileged to have had the opportunity to see him in-person for my diagnosis appointment, and to see this other side of him.¬† I hope he felt our gratitude as well.

The “pick whose going to cut into your head” decision took a while.¬† I was offered 100% coverage through a quality hospital and with a quality neurosurgeon for anything done at their facility, but the endocrinologist there wanted me to start my testing process ALL over again with them, at my cost at home.¬† I was not willing to start over after all that hard work and with as quickly as I was deteriorating, so I decided to wait till January when the new health coverage laws were in effect and I¬†could again get insurance without preexisting conditions clauses.¬† I was able to be referred to my first-choice of neurosurgeon’s and placed on Ketoconazole to help lower my cortisol while I waited.

I had pituitary surgery on February 5,2014 (I am writing this 4 months post-op).¬† They were able to find and remove the more obvious of tumors on my MRI, and explored the rest of my gland, finding no more tumor tissue.¬† My pathology report came back as “hyperplasia”, meaning I had a bunch of individual scattered cells that were a tad overgrown instead of a solid, encapsulated tumor.¬† This kind of tumor has a very low success rate, since the entire gland can be diseased, but it can be impossible to see and remove every one of the scattered cells.¬† We knew early on that it didn’t look like remission based on my symptoms and post-operative lab results. ¬†I was off my replacement hormones within a month, had to wait for my cycles to normalize a bit (I guess all that pituitary fileting was noticed by my pituitary even if I wasn’t cured! lol) and then I could begin retesting for re-diagnosis.

In April I had a post-op MRI and follow-up with my neurosurgeon, who said I did not have a visible target on MRI, and with pathology report of “hyperplasia,” I am not¬†a candidate for repeat pituitary surgery or radiation therapy.¬† We now know that a bilateral adrenalectomy (BLA, the surgical removal of both adrenal glands) is in my near future…but I need a multitude of lab tests to prove I need it, and give a surgeon enough reasoning to permanently remove two very vital little organs and put me on life-sustaining medication instead.¬†¬†It is a drastic surgery for a drastic disease, but it is my best chance at a lasting cure with the least amount of hormone replacement and further damage to my¬†other organs.

During this same trip, I was able to attend the Magic Foundation’s adult convention just a few hours from my¬†follow-up appointment.¬† What an amazing event.¬† I learned many things, but perhaps more important to me, I was able to meet other people who¬†had my disease, who understood what I¬†was going through, had been there themselves, etc.¬† They just knew!¬† I felt at home.¬† I consider it quite telling that they¬†switched the schedule of the conference to part-days to accommodate our fatigue…¬† The trip was hard on me, but I am SO glad that I went.

In May I started testing in earnest for my re-diagnosis.¬† After intensive testing one week, and hit/miss testing the next (I was¬†cycling lower and thus stopped testing), I now have 5 diagnostic-level high lab results.¬† Because of the severity and permanency of this next surgery, my endocrinologist has asked me to continue testing.¬† I will start testing again during my next high¬†cortisol cycle¬†in the hopes of doubling the number of diagnostic-level highs that I have and move on to the surgeon referral process.¬† It’ll take a couple of weeks to get my lab results back (Oh, the agony!), and another couple of weeks to get my endocrinologist appointment and surgical referral if¬†I do indeed have sufficient highs.¬† I’m *really* hoping he won’t want me to go on medication prior to surgery as I’d like to move forward towards a permanent cure and health!¬† Not to mention, my deductible is met for the year, so this year would REALLY be nice on my already broken budget.

With the new goal in sight, and some diagnostic testing that proves I’m still ill, we are hopeful.¬† ¬†I’m now nearly bedridden due to the physical exhaustion, but I’m starting to allow myself to plan for a near-future in which I am somewhat functional and active again.¬† I can’t wait!¬† Once again, it sounds silly to be so excited and wishful about having surgery to give me Addison’s disease, just as it was to be thrilled to be told I had a tumor, dreaded disease, and needed brain surgery.¬† But, I’ve been sick for so long and becoming more and more debilitated and sick the longer this has gone on that¬†I am excited at the prospect of any semblance of improvement, health and normalcy!¬† (Okay, within reason…I am well educated and using logic, etc on this, but…YAY!)¬† I can feel it is within my reach again.¬† I’m on the path and moving forward.

———————————————————————

Here is Magic’s video of me:¬†

And the picture I spoke of in my story is attached (Dr. Friedman did give me verbal permission in-person to share it online –facebook, etc.¬† I imagine he’d be fine with it published in an email?)

I will include a before/after onset collage of pictures as well.  Use whatever you like.

Catherine blogs at http://muskegfarm.blogspot.com

catherine2

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Erin, Undiagnosed Bio

1 Comment

Hi. My name is Erin and I’m 28 years old. The first time I ever heard of Cushing’s was a couple weeks ago while doing a search for hormonal imbalance. I’ll explain why later. I am currently doing a 24 hour urine cortisol test, and thought that in between peeing in the large container, I’d share what little story I have.ufc

I have always been a normal weight and healthy, well, up until about 5 years ago. I mean, obesity was NEVER a word that had to be used to describe my weight. I’m 5’8″ and lingered around 140 lbs my entire life. I was quite the drinker, too. I started gaining weight when I was about 22 or 23, and started taking Adderol to get the weight down, and it worked like a charm. (I am currently a recovering alcoholic and have been in recovery for over a year now.)

When I started trying to get sober, I noticed little things, but mainly the weight gain. I have always had larger hips and thighs and a smaller waist, so when I began to look 6 months pregnant, I thought it was odd (and embarrasing). I have bruised very easy every since I was a teenager, but in the past few years the bruises come easier and are quite large. My acne will just not quit, and I started sprouting these thick hairs on my face, chest, and abdomen. My face has ballooned out like a pumpkin, and I don’t hardly recognize myself anymore.

In May 2012 I had a miscarriage at 12 weeks. During the pregnancy I started getting these purple stretch marks all over my thighs and hips, and since I had neve been pregnant before, decided this was normal. Before then I was having trouble getting pregnant, but just chalked it up to bad timing. After the miscarriage, I noticed my menstrual cycles were different. They had shortened from 26-27 days to 22 days, and just didn’t seem right. I started seeing my gynecologist every month, but kept getting dismissed because it hadn’t been a full year since the loss, and my hormones were probably still imbalanced. I did get them to test for PCOS, and everything came back normal, including an ultrasound, which just made me seem crazy. ¬†I switched gyns and eventually had a hormonal blood test, which revealed very low estrogen and progesterone, and I was referred to a fertility specialist. Another blood test there revealed my ovaries are not responding very well and not secreating enough of the AMH hormone.

About a month and a half ago I decided to battle the bulge, and joined a gym and changed my diet. After 2 weeks of cardio and strenth training almost every day, I hadn’t lost a pound. Then at week 3, I finally noticed a 2 pound weight loss, but that’s when the knee pain started. For no reason at all, my knees became VERY sore, swollen, and were bruising from the inside of the joint. I saw an orthopedic who couldn’t find any evidence of injury, gave me a cortisone shot in each knee, and sent me on my way. I should also mention that a week before that I had a cortisone injection in my back for a herniated disc that was causing sciatic nerve pain.

A few days after the last set of injections in my knees, I started feeling very ill and run down. I had also just missed a period for the first time in my reproductive history, and after a negative blood pregnancy test, was told my hormones were too low for my period to start on its own. I thought I was feeling under the weather because of the missed period, so that’s when I started looking up hormonal imbalances online. When I came across the word Cushing’s, I couldn’t stop reading about it. I thought, oh my god, these people are me! They look like me! Thinking back over the years, all of these individual symptoms could be explained away due to stress, inactivity, lifestyle change, etc. But collectively, I started to see the bigger picture.

So, I am currently testing with my PCP. I am selfishly hoping that I get a quick diagnosis, or if it isn’t Cushing’s, that they find some other reason for all of these symptoms. But from what I’ve read this is going to be a long process.

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