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Moxie G, MoxieGarrett, Pituitary Bio

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August 1, 2017:

It’s been 3 months since my surgery. I’m still trying to piece my story together.

I think it begins with the pregnancy and birth of my last child in 2012. After 3 exemplary pregnancies and home births, I never expected the cholestasis, a 36-week breech & manual turn, or a retained placenta and near fatal delivery. After successfully nursing 3 children, I struggled to produce enough milk and gave up after 3 months. I was ashamed of my inability to have a healthy pregnancy and nurse my baby. I tucked it away.

Normally a very thin and “bounce back” kinda person (5″8/130lbs), I was unable to entirely lose my baby weight and then noticed a gradual weight gain. My wedding rings no longer fit and when I went to get them resized, I was told my finger had changed by 2.5 sizes. I was embarrassed. I took them off.

My once angular face became puffy & round. I developed acne on my back and arms. Nothing healed. I started noticing dark facial and body hair on my blonde body. Normally a pink person, I didn’t really notice when my skin turned red. Normally easy to bruise, my new ones didn’t alarm me. Having not escaped my pregnancies without some stretch marks, I didn’t think much about the excess ones I was sporting. Always complaining of feeling cold, I now felt like I was overheating and wanted to rip my clothes off. My cuticles cracked and bled and I chalked it up to winters in Canada. Two of my teeth broke and I figured they were just weak… it runs in the family. My newly prescribed glasses made everything look fuzzier… oh well, I’ve always had poor vision. I attributed my alarming hair loss to post-pregnancy normalcy. I figured the continuing lactation was just a left-over indignity. Pretty sexy stuff.

People asked me on a regular basis when I was due. My abdomen was completely rounded, my breasts were huge, but I still had comically thin limbs. It felt like my body was open to judgement and commentary. I was ashamed of my new appearance. I made light of it.

I stopped attending social functions because I hated the way I looked. I couldn’t bear going through the process of trying to find something flattering to wear and then having to field questions about my uncharacteristic weight gain. I felt like I always had to explain myself. It was humiliating. I withdrew.

I had a pathological, insatiable thirst. Normally not a large beverage consumer, I was pounding can after can of whatever I could get my hands on. I planned every excursion around knowing where there were restrooms and where I could buy my next beverage. My sleep was interrupted hourly. It became a joke among my family & friends. I limited where I would go and who I would be around.

I oscillated between having super-human energy (16-18 hour self-imposed workdays) to being so bone-weary that I would fall asleep sitting up at my computer, mouse still in hand. When my symptoms began, I was working in senior positions in advertising agencies. It was a demanding & high-paced lifestyle. Also during this time, I left my career to open my own business. In the 5 years I was sick, I launched a successful childrens’ retail store. I assumed my exhaustion was a natural by-product of my workaholism. All working moms are this tired, right?

I couldn’t understand… I was functioning at a high level… 4 happy kids, a great marriage, a clean house, a successful business, I was even freelancing as a strategist on the side. Why didn’t I feel like myself? What was going on with my body? I surely couldn’t be ill. I was doing just fine. Look. See? I should just try harder.

I often said to my GP that I thought my hormones were outta whack. Nothing was severe enough to warrant a doctor’s visit or alarm. Everything was manageable but there were so many small, strange things happening that I was sure something was off. Eventually, she ordered blood tests. I carried the requisition around for almost a year. I thought I was overacting and wasting people’s time. In June 2016, I had a severe sinus infection and went to my doctor. Sheepishly, I promised to attend to the blood work I had been avoiding.

A week later, my doctor’s office called and told me to walk myself to the hospital emergency room. My sugars were 34 (Normal is 4-6, Coma is 16+). I didn’t know what this meant but was assured it was severe. I called my husband and we went out for dinner. I sent him and my daughter home and walked to the hospital.

I started to get an idea of how serious it was when the hospital staff rushed me in and started giving me insulin shots. No-one could understand why my sugars were so high and how my body was tolerating it without shutting down into a coma. They tried unsuccessfully for 24 hours to bring my sugars down to acceptable levels. With no history of family or gestational Diabetes, I was diagnosed with Type 2.

Dealing with this diagnosis was hard. It was my belief that only fat, lazy people with horrible lifestyles developed this disease. I went home and had to learn how to live like a Diabetic. I cut sugar completely out of my diet. We had to relearn how to grocery shop and cook. I had to start reading and understanding food labels. My husband made me disgusting quinoa muffins. Being a Diabetic became a full-time hobby. And the medications wreaked havoc on my digestive system.

The road to finding out what was causing the resistant Diabetes was in full throttle. I met dozens of doctors, nurses, technicians, and specialists. I had CTs, MRIs, X-rays, diabetes management & dietician appointments, urine tests, blood tests, hormone tests, pre-op & pre-admitting appointments, visual tests, Neuro-opthamology appointments, ENT consults, Endrocrinology reviews… It was constant and exhausting. I developed a deep hatred for medical tape.
So, Diabetes symptoms led to a Cushings Disease diagnosis, which eventually led to a pituitary tumour diagnosis. I had a 9mm Adrenocorticotropic hormone (ACTH)-producing tumour. Surgery was booked. Jokes were made. All of a sudden, I needed everything about as much as I needed a hole in the head (They really did drill a hole in my skull. It’s held back together with glue!). But being diagnosed with a brain tumour was a relief. Something beyond my control was responsible for my current condition. I didn’t do this to myself because I was incompetent, lazy, or deserving. This was done to me and now we could try to fix it.

My surgery was booked at St. Michael’s Hospital with Dr. Cusimano here in Toronto for April 21. Due to a hospital error, my surgery was cancelled at the last minute and re-booked for May 1. After my family travelling here to be with me, getting my house in order, making arrangements for my store, childcare, packing my bags, saying cryptic goodbyes to my loved ones just in case, and even shaving my legs, I was crushed. I had mentally prepared and now I had to wait another 9 days and do it all over again.

Getting prepped for surgery was terrifying. I was in surgery for just over 3 hours and in intensive care for 3 days. I slept a lot during my immediate recovery. I had a bout of Diabetes Insipidus. But the good news? My cortisol crashed immediately. This assured everyone that the tumour was gone. The bad news? I felt like absolute garbage. My mom, my husband, my brother, and my best friend were there with me. I let them take care of me. I let them take care of everything.
Surgical recovery is manageable. Getting the stitches & stints removed from my nose was absolutely horrible and I had what I thought was a panic attack directly after the procedure. It really scared me (I now know it was my adrenalin crashing. My surgery has left me with an adrenal insufficiency which means my body cannot handle any stress, illness or injury.). Scar tissue has formed around one of my nostrils. It is affectionately known as “Mini Nostril”. And I can tell you that not blowing your nose for 3 months is one of the most annoying things in the universe. I went back to work 8 days after surgery. I shouldn’t have, but I’m a show-off. Everybody that sees me is stunned at the transformation thus far. My skin is a normal colour and I have lost nearly 30 lbs. People that knew me before I got sick say, “Welcome Back”. People that didn’t know me previously ask me if I am ok or don’t even recognize me.

Chemical recovery is terrible. My sugars are behaving more normally and I’ve been able to discontinue one of my three medications. I started my hormone weaning a few weeks ago and it is so hard. My latest blood tests show that my body is still not producing it. Every muscle and joint aches. I barely eat anything. I have headaches. It takes me hours to fall asleep. I’m dizzy. I’m weak. I’m exhausted. I’m not sure my digestive system will ever be right. I’m so tired of complaining. This will be my reality for at least a year.

But, I am hopeful. I know that I will heal. And most of all, I am grateful… for the love of my friends & family, the health of my children, the healthcare system of my country, and the chance to reset my life. I put my wedding rings back on yesterday. They fit.

(And what of that fucking tumour? The hospital adopted him. I had to sign papers and everything. You’re welcome, science.)

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Melissa (SweetMelisa), Adrenal Bio

2 Comments

adrenal-glands

Hello everyone,

First, thank you all for sharing your stories. While I am not thrilled to me joining the group, it is nice not feeling alone in this journey anymore. My thoughts and prayers to all of you who have traveled this path and continue to do so.

My case is rather complex. It seems I have a myriad of problems going on and I am still navigating toward a diagnosis. I am a 41 year old who is 5’5 and last I checked, idling at 184 lbs despite a daily calorie intake of around 1200.

In brief, I have battled weight issues since puberty despite being a relatively healthy eater and involved in sports until I was 16. Other than weight issues I have had a relatively healthy life until I decided to start having kids in 2004 (age 28).

First pregnancy: diagnosed with “borderline” gestational diabetes. Monitored with finger sticks before meals and controlled by diet. Despite healthy eating, I gained over 60lbs with my first pregnancy and gave birth to a nearly 10 lb baby via c-section. My cycles became horrible thereafter.

Second pregnancy: experienced secondary infertility issues (it took us 13 months to conceive). I was diagnosed with low Progesterone and put on a supplement into the beginning of my second trimester. Delivered a healthy baby, nearly 9lbs, via c-section. I gained 35-40lbs with that pregnancy.

About a year or a little less after my second pregnancy (around 2010) I was diagnosed with hypertension after my readings stayed in the 140-150s/80s-mid 90s. I was placed on a hypertension medication but I discontinued it after about 6 months because of the development of a chronic cough (and thinking I could change my lifestyle a bit and the BP issue would follow suit). I was also experiencing pretty bad fluid retention in my feet and ankles but nothing was done about that.

During 2011 to the end of 2014 I lost my health insurance and therefore did not seek any medical care. In 2015 I regained it and changed PCPs to an internist since I was approaching 40 and knew the next phase of life could bring on major health changes. Boy did I plan that right.

Feb 2015 I had a routine workup done with my new doctor. The labs showed elevated triglycerides, a BP of 182/128 (yikes), continued fluid retention (so bad at times I can’t fit into anything other than slide on shoes) and a very low Vitamin D level. My new doctor placed my on a BP med with a diuretic, ordered me to go on the Atkins diet, watch my sodium intake and to take 5000mg of Vitamin D a day. Then follow up in 6 months.

At the 6 month follow up, my triglycerides barely decreased, instead of losing weight on Atkins, I gained 6 lbs and despite the diuretic, I was still having fluid retention (though not consistent). (They did not believe that I had changed my eating habits by the way). I was told I needed to really focus on eating better and I was scheduled for a 3 month follow up and if I didn’t lose weight then we would have to have a more serious talk (I was 172lbs at my first appointment). I missed the 3 month follow up because I am also a caregiver to a chronically ill parent.

Fast forward to March 2016 (late March), I developed an upper respiratory infection. I typically get them every April but this one was very different. The fatigue was debilitating. It hit me like a ton of bricks at the checkout counter of a drug store and it took every single remaining ounce of energy for me to walk to my car, a mere 100′ away. I was diagnosed as having a bad viral bug but………..they also found a new heart murmur and I had informed them about a couple episodes of shortness of breath and waking up with a racing heartbeat (110 beats per minute). They put me on a steroid and had me follow up in a week or so.

April 2016 I followed up and while there, pointed out a palpable mass just above my navel and slightly to the right. I told them about a weird abdominal “catching” type pain I had been experiencing since last Fall and maybe it was adhesions from c-sections or a hernia. And so began the unfolding of many many tests and findings ever since……….

During the journey to figure out the hernia (which was finally picked up by a 2nd surgeon at a teaching hospital) I began experiencing relentless right upper quadrant pain which led to a lot more tests, several specialists (a GI doc, 2 surgeons, 1 OB Nurse Practitioner, 1 OBGYN and my PCP).

Findings:
Gallbladder normal on ultrasound, normal on CT with contrast and normal on MRI but HIDA Scan shows an ejection fraction rate of 18% (Cholecystectomy recommended). The 24/7 pain has subsided but I do have pain daily though oddly enough, it is triggered by not eating as well as eating (and more often by healthy food than fatty ones).

CT with contrast showed bilateral adrenal adenomas. An in phase/outphase MRI was ordered. MRI result: 2.6cm adenoma on right adrenal, 1.7cm adenoma on left adrenal 3 lesions (cystic type) on my liver. (I asked my PCP if I should be concerned about these, He said no “They’re incidentalomas”. I don’t think they have anything to do with what is going on with you.” I told him I had read the Endocrinology Society recommended a workup to see if they are functioning or nonfunctioning and that I was concerned about my weight gain (difficulty losing it over the years), increasingly bad blood pressure and fluid retention issues. He said he would to the 1mg dexamethasone suppression test but to wait to have it done after I had other workups done). I could tell he was only ordering the test to appease me. More on that in a minute.

GI specialist did an endoscopy and colonoscopy: Endo fine, colonoscopy discovered 3 polyps (2 benign, 1 precancerous adenomatous) and a diagnosis of mild diverticulosis

OB visit led to 3 vaginal ultrasounds and the discovery and tracking of a suspicious, large ovarian cyst (turned out to be hemorrhagic) and a thickened endometrium. Endometrial biopsy done – negative for hyperplasia and cancer.

After all of my other testing sessions slowed down, I went in to have the 1mg dexamethasone suppression test done (July). My AM cortisol came back with a result of 5.9 (my PCP is calling this borderline). He ordered the 2 day test per endo protocol…..the AM cortisol came back 7.1 and my ACTH came back undetectable. I sent him a journal from the Endo Society with a bunch of hi-lighting and that I wondered if we needed to check for Aldosterone issues because of the fluid retention. He ordered an Aldosterone/Renin Ratio and 1 other lab test. Thursday will be 2 weeks and I have still not received the results. I do have an appointment to meet with him next week for him to “discuss” all of these findings. I am suspecting at this point, that I have sub-clinical cushings or something of that nature.

I have been delaying my cholecystectomy and hernia repair surgery pending these tests. Now I am concerned that I will be adding at least, a unilateral adrenalectomy to the list, if not bilateral which frankly, scares me quite a bit. I will be requesting a referral to Johns Hopkins or Duke to see an Endocrinologist. I asked my PCP early on when the adrenal adenomas were found if I should be referred to one and he said he didn’t think it was necessary. I am losing quick confidence in my PCP though he is well respected by other patients that I know.

Anyway, thus is my story…….and I know more is to come.

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