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Amanda P

It’s tough to know where to begin. The more I find out about Cushing’s, I think about symptoms I myself dismissed for years, or blamed other things. I found ways to cope. I had one pregnancy to term, it was a horrible pregnancy. I vomited the entire pregnancy, honestly the only time in my adult life I lost weight. She was born weighing 9lbs 1oz even though I rarely held down food or prenatal vitamins. She was perfectly healthy, but swollen with a moon face. She lost such a large amount of weight in the first couple days that doctors were concerned. With what I know now, and how she looked, I’m sure it was because of the cortisol in my system.

I think the fact that my Cushing’s is cyclical is the only reason I could get pregnant in the first place. After the birth of my daughter, the next 17 years were filled with various issues like vomiting that would last for days or weeks to the point the pores in my face would burst and I would bleed. There wasn’t a month that went by that I didn’t get sick. I would go through phases where I would gain a ton of weight, and then normalize. Pitting edema, gastro issues, mood swings, sun sensitivity (to the point of hives). I have been misdiagnosed with Lupus & PCOS. Endured years of random testing, even MRIs because my feet grew and a neurologist thought it was acromegaly. Numerous blood tests, skin biopsies. Most doctors did not seem to hear what I was saying and instead told me to exercise more and eat better- though I have fairly health eating habits. I follow a primal diet, I grow a lot of my own food. I preserve food, shop the perimeter at the grocery store.

In November 2018 the vomiting became severe, and it was difficult to hold food down. I started having pain in my lower left abdomen. In January of 2019 I went in for an exploratory CT scan. They found a 5mm nodule in my left lung (I have multiple now) and an 4.4cm adrenal adenoma. The followed up with a specific scan for cancer and once that was negative they told me I’m ok, follow up in a year.

After this, I had an appointment with a gastroenterologist for additional testing (endoscopy, colonoscopy, and a gastric emptying study I couldn’t finish because of vomiting). Still in pain, I start doing my own research on adrenal adenomas, and found that there is more to worry about than cancer. I pushed for testing and a dexamethasone suppression test was ordered, results came back at 2.3mcg/dl. They incorrectly told me that anything below 4.9mcg/dl is in normal range. The research I’ve done contradicts their protocols (“they” being my HMO/insurance company).

I changed my primary care doctor, hoping an internist would be better suited to help me. She immediately started in on diet, exercise and wanting to put me on weight loss pills. I pointed to Cushing’s but she said I didn’t “appear” Cushingoid because my arms and legs were not skinny. Still, she put in a referral to endocrinology and the head of endocrinolgy denied the request. That started the fight….5 appeals. Being told it’s all in my head, some administrator telling me that I need to see mental health help for my bulimia. During this fight my diabetes got worse and I ended up on insulin. Gaining another 70 lbs in 4 months. The final appeal in my State went to an outside review board, and they overruled the denial for the referral and added that I must be tested for Cushing’s!

In June of 2020 I began testing. Results were a mixed bag of borderline and high. The endo finally agreed I needed surgery, but still wasn’t 100% convinced I had Cushing’s. I had surgery in Oct of 2020. I still have never met my endo, supposedly due to COVID. He couldn’t even come to the hospital after surgery. Surgery went well mostly, I had some low oxygen levels and had to stay a few extra days.

Recovery is rough. Tapering is painful, especially with lack of medical support. Kaiser protocols won’t allow for an emergency injection kit. Within 2 weeks the hyperpigmentation was gone. The biggest change was nausea and vomiting- gone, with a few small exceptions. After spending 19 years getting sick this was historic. The buffalo hump gone, moon face gone though I’m still very overweight. My tumor was larger than the CT showed, but not cancerous.

The pain is horrendous, after a couple falls I was able to get physical therapy but only online which was not helpful. My blood sugar control got better until I got sick in January of this year. I’m back on insulin, plus metformin. I can’t lose weight, because I have limited mobility. I’m angry. I will be 43 this month and I have lost half my life. I feel like I’m 70. I still have minimal support from my doctors. Endo had me wean fully off HC about 6 months ago, but I’m far from recovered, and not sure I will ever be with this medical team. It’s very frustrating what most of us go through, and continue to go through just to save our lives.