Cushings? I’m a mystery!

Posted by chrisfd @chrisfd, 2 days ago

Hello everyone,

I truly appreciate anyone who takes the time to read this and share their thoughts.

I’ll start from the beginning. In 2015, when I was around eight years old, I was diagnosed with osteopenia. I saw many doctors at the time, but no one could determine the underlying cause. About three years later, I slipped while it was raining and fractured my femur, which required surgery. During that time, one of my doctors suggested testing for Gaucher’s disease, but the results came back normal.

Around this same period, it was also discovered that I had high blood pressure. At the time, I assumed it was related to being overweight. In 2019, I had the hardware from my femur surgery removed. After that, I didn’t see a doctor again until 2025, largely due to fear about my blood pressure and, admittedly, some immaturity when it came to managing my health.

When I finally returned to a doctor, they ordered basic blood work. Everything came back normal except for low vitamin D and a low-normal testosterone level (338). I was referred to an endocrinologist, but I never followed up at the time.

We began treating my high blood pressure with losartan (50 mg with HCTZ), but it didn’t help much. The dose was increased to 100 mg with 25 mg HCTZ, still with minimal improvement. Propranolol ER (60 mg) was added but had little effect, so it was discontinued and replaced with amlodipine. At 5 mg, there was some improvement, but not enough. Increasing to 10 mg caused side effects I couldn’t tolerate, so I settled at 7.5 mg, where my blood pressure is still slightly above goal.

Last month, I had a more extensive workup, including iron studies, thyroid tests, cortisol, prolactin, testosterone, and free testosterone. Everything came back normal except:

Cortisol: slightly elevated at 27 (drawn at 8 AM)

Testosterone: 308 (low-normal)

Free testosterone: normal

I’ve now been referred to an endocrinologist and have an appointment scheduled for June 10.

In addition to this, I’ve been experiencing chronic dizziness since around 2018. It feels like a sudden drop or sinking sensation, almost like my heart drops, followed by a swaying feeling. Taking hydroxyzine seems to help relieve these symptoms.

I’ve also developed a few pink stretch marks on my abdomen over the past 1.5–2 years. They are about 3–7 inches long and roughly a quarter inch wide.

Recently, I came across information about Cushing’s syndrome while researching my symptoms, and I’m wondering if this could be a possibility. If not, I would really appreciate any insight into what else might explain what I’ve been experiencing.

I’m feeling overwhelmed and honestly scared, and I don’t know what to think or do next. Thank you again to anyone who takes the time to respond.

Interested in more discussions like this? Go to the Diabetes & Endocrine System Support Group.

Profile picture for chrisfd @chrisfd

@carbcounter

Hello! Thanks for the response! They didn’t test my A1c, but I believe my glucose came back as a 94. I wouldn’t say my diet is the best but I have really cracked down at my highest weight two months ago. I was 274 pounds. I am now down to 254. That is strictly from calorie counting and setting myself on a calorie deficit. I have extremely bad health anxiety and when I get stressed, I start eating in a matter of about 6 months I went from 234 pounds to 274. I’m getting about as much exercises as I can at this point being a full-time student and trying to prepare to either go to medical school or pharmacy school. The only problem I have with walking, especially outside is I didn’t mention this. I have a super bad heat intolerance like I mean literally I get so dizzy that I feel like my whole head is just spinning around on top of my head and I’m swaying from inside the side. So instead of taking walks around the neighborhood, I try to walk my wraparound porch at our house to equal up about a mile.

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@chrisfd
Do you have eczema? The fact that you have severe heat intolerance sort of screams a hormonal imbalance, hyperthyroidism ( usually lose weight in this case though), cardiovascular issue, medication issue or possibly the eczema/ autoimmune problem. Research your symptoms further, keep a health journal and exercise in a controlled environment right now. Try dissolving 1/2 Tbsp of good quality unflavored gelatin in your coffee or tea in the morning. The protein won't hurt you and if it's a Cortisol issue, you should feel some improvement after 3 weeks. If so, tell your Endocrinologist.

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Profile picture for grandmab33 @grandmab33

@chrisfd
What about the rest of your full thyroid panel? Were your antibody levels high? Do you have other autoimmune issues? Some Endocrinologists get too focused on test results while not realizing that not everyone either tests normal or fits within what medicine has deemed the comfort zone to maintain and feels good.

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@grandmab33

Hello, I do have eczema, but I’ve had multiple thyroid tests done and they all have came back normal. T4, T3, TSH. I also had my FSH and LH test tested, which came back normal. I do have a family history on my mother side of overactive, thyroid and my mother grandmother and my Nana‘s mother they all took levothyroxine. So he has tested my thyroid function about every six months and it always comes back normal.

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So..first of all, hormonal imbalances are Endocrine system issues and aren't limited to just your thyroid although hyperthyroidism does make you heat intolerant. I'd go to an Endocrinologist that looks at your whole Endocrine system. Secondly, sweat glands can be inhibited by eczema, some medications, high sugar diet, obesity, alcohol or high caffeine in your system. There's also heat sensitivity from neurological diseases such as MS or Parkinsons...family history? Cardiovascular disease can impact blood flow which can impact your body's ability to cool itself too as well as medications such as antihistamines, some psychiatric disorder meds and Beta blockers. Sometimes it takes thinking outside the box, some research and eliminating what doesn't make sense...then exploring and testing what does. A good researcher helps find possibilities, then you need to put emotion aside, keep a journal and find creative ways to narrow the field of possibilities. I diagnosed by own hypothyroidism years ago out of desperation because of extreme exhaustion and bugged my physician until she sent me to an Endocrinologist who I totally amused. He was a Godsend and taught me that my immune system was my biggest issue to carefully control. Good-luck.

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Profile picture for chrisfd @chrisfd

@grandmab33

Hello, I do have eczema, but I’ve had multiple thyroid tests done and they all have came back normal. T4, T3, TSH. I also had my FSH and LH test tested, which came back normal. I do have a family history on my mother side of overactive, thyroid and my mother grandmother and my Nana‘s mother they all took levothyroxine. So he has tested my thyroid function about every six months and it always comes back normal.

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@chrisfd
And..I forgot, I'm a bit confused your relatives were on Levothyroxine? That makes them hypothyroidism patients...under active thyroid. Hypothyroidism is what makes you heat intolerant and Graves disease can make you bounce back & forth between the two.

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Profile picture for grandmab33 @grandmab33

@chrisfd
And..I forgot, I'm a bit confused your relatives were on Levothyroxine? That makes them hypothyroidism patients...under active thyroid. Hypothyroidism is what makes you heat intolerant and Graves disease can make you bounce back & forth between the two.

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@grandmab33

Sorry that’s what I meant!!

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Profile picture for chrisfd @chrisfd

@grandmab33

Sorry that’s what I meant!!

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@chrisfd
You can flip back and forth between hypo and hyperthyroidism if you have Graves disease. Hypo...you're usually the person who's cold and wearing a sweater in the Summer. Hyper...and you can overheat despite not being in a warm place and be heat intolerant.

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Thyroïde problèmes one scale 0.5 To 5 hyper, hypo, Grave, Hashimoto same scale,in case of m'y wife hashimoto need 0.5 To 1 To going good very long terme, and request lowering médication To maintain the range
Pierre Demers

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I am curious as to why you think you have possible Cushing's disease. A true Cushing's disease comes from a pituitary tumor (usually benign). If this is a possibility, then please get an MRI of your brain to check. The opposite of Cushing's is Addison's disease - which is a problem with the adrenals. The Pituitary and the Adrenals need to "speak" to each other to provide proper hormone balance. You can also develop Iatrogenic Cushing's disease (unknown cause) or from the use of steroids to control other conditions. If you are having eczema, then please do a pulmonary assessment - as eczema is the body's outward reaction to having asthma. It may not develop into asthma - but this is yet another autoimmune problem. Regarding the "stretch marks" you seem like a young person - and it is possible this is part of a growth spurt - which can occur after the age of 21 (all people "bloom" differently).
Please check your parathyroids (which if low, can be causing the Vit D deficiency (also calcium deficiency). Have your hypothalamus checked - which could cause the heat intolerance as well.
It is good that you are on top of your health and trying to figure all of this out - while you are young, so you can get proper treatment and lead a rich life feeling healthier. Feel better and good luck.

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