I’ve had a lot of women approach me on Instagram saying they either were just diagnosed with Cushing’s Disease, think they have it and want to know more or feel as though the proper tests aren’t being done by their doctor’s/specialists despite having all the physical symptoms and the symptoms people don’t see (lack of sleep, energy and exhaustion). I’d love to give my advice through what I went through to get my diagnosis. Once I was diagnosed, I was diagnosed as “textbook”, meaning I have the exact issues med students spend 1 week studying for Cushing’s. Disclaimer: I am not a doctor. This is merely my experience and I feel as though it could be useful to some women (and men, men can get this, too!) in understanding how to get on a path to a true diagnosis. This is also an experience for someone who has a tumour on their pituitary gland as there are different types of Cushing’s and different ways people get them. Think of this as a part of research if you’re looking up your symptoms and trying to add them up so you better understand your body and better understand how to be an advocate for your health.
Now, this next bit is going to sound harsh, but I’ve also had a fair number of women who clearly don’t have Cushing’s, message me saying they have it and the only symptom they have that links to Cushing’s is weight gain. Just because you are gaining weight, does not mean you have any form of Cushing’s. The weight gain with Cushing’s is VERY specific in where it is gained and it is not all around your body. I will discuss this better in the symptoms part of this post.
When I first went to my endocrinologist, I was sent there with thoughts that my general practitioner and naturopath thought I had PCOS (Polycystic Ovarian Syndrome) because of my weight gain, lack of sleep and extra hair growth. Through research on PCOS, I stumbled upon Cushing’s Disease… read about it a bit, considered it but the second I read “tumour”, I completely dismissed it. Like no way in hell did I have a tumour in my brain, hell no. Little did I know, that would be my endocrinologists FIRST suggestion. “Did you ever consider you may possibly have Cushing’s Disease?” Right then and there, my gut told me I had it. He said I had “moon face” and the red cheeks. He then asked me if I had any stretch marks and boooooooy, did I ever. Purple, bright and deep stretch marks behind my calves/knees, upper-inner thighs, hips and then later after my diagnosis, I began getting more under my arms, on my breasts and upper-rib cage on both sides. This is just the tip of the iceberg in terms of symptoms. So you think you have Cushing’s? Let’s start with the symptoms.
Symptoms of Cushing’s Disease
Physical symptoms you can see:
So I found the following photo on Google. Let’s call her Gertrude. Gertrude is a Cushing’s patient. Gertrude is displaying where weight gain in a Cushing’s patient forms.
- Weight gain around abdomen, upper back, and face. You also get a “Buffalo hump” on your upper back, right where your neck begins. Of course you gain a bit of fat on your legs/arms, but that is from loss of muscle. Your legs and arms stay “thinned out” compared to the rest of your body.
- Stretch marks, mainly on belly, chest and lower back, but can also form under arms, back of legs and thighs. These stretch marks generally start off purple (which I later learned is because of such high levels of cortisol) and then go down to red.
- Hair loss and hair growth. People are different, so you won’t have the same as me. But my right arm, I lost hair in a certain pattern and the rest of my arm stayed normal. The hair on my head started thinning out and I was losing more of it. I grew a lot of hair on my lower back, and lower abdomen. Now, I also grew out a precious little moustache I like to name Pablo. No matter how many times I waxed my upper lip, Pablo just loved making a strong comeback. He brought some friends along a little while later, under my chin. He really wanted to bring out my double chin, as if it wasn’t noticeable enough on it’s own. My sideburns also quickly gave Elvis a run for his money – no amount of Nair could help me with those suckers. This hair growth was brought to you by hirsutism, where testosterone levels are elevated and thus brings coarse, thick dark hairs to grow on a women’s body.
- Red cheeks – Not sure why that is there exactly, but you can blame it on the cortisol.
- Acne. I never really had acne until my Cushing’s started flaring up.
- Ashy skin. No amount of body butters could keep my skin moisturized. A rub against a smooth wall? You can bet my skin looked like you just took sandpaper to it.
- Scrapes/cuts/bruises that won’t heal. For those of you who know me personally, know I love my cat. My beloved Pitsu has big claws and when he plays with me, they sometimes dig into my arms/hands or he tries to hold onto me and slips away, causing a lot of cuts on my arms. These don’t heal quickly because of the high levels of cortisol. Thanksgiving of 2016, I was trying to get out of the tub and because I barely had any strength left in me, I slipped onto my side/arm and my arm was severely bruised. Usually takes a few days for me to heal from bruises… This one lasted a solid week and a half.
- Sweat. I would be sitting in a cold room and I would be drenched under my clothes. Sweating for absolutely no reason at all. It was uncomfortable.
- Swelling from water retention
Internal Symptoms you cannot see:
- The obvious raise in cortisol levels. You feel on edge, incredibly irritable and unable to sleep. When my levels started getting very high, I began getting hives.
- Hormonal imbalances – not 100% on the specifics of what specific hormones are affected, but from my understanding, it is pretty much all of them and they’re heavily imbalanced.
- You can develop pre-diabetes or diabetes. I was pre-diabetic before heading into surgery. I asked my endocrinologist what I could do about it and he said as long as my cortisol was as high as it was, nothing could help me. Healthy eating was useless.
- Bone/muscle loss. Some women I’ve spoken to had their bones become so weak and brittle, that they lost height!! I am very lucky I didn’t, but I definitely felt them weaken. You lose pretty much all of your muscle, making it difficult to do everyday tasks like walking or squatting down to grab something. Going up and down the stairs becomes a chore. I fell down the stairs twice and then that tub story above – yep. It was rough.
- Loss of menstrual cycle. Now, I am not sure if this happens to every woman, but most women I’ve spoken to lost their period. Each with a different timeline. Some were 5 years, 3 years. I lost mine for 6 months… This is also what brings on hirsutism.
- Fatigue. And I don’t mean the type of fatigue where you catch up on the weekend and then feel much more refreshed, even if you still feel tired. I mean a fatigue where no amount of rest, sleep or relaxation (if you can even relax), will help you.
- Anxiety/depression. These worsen as the symptoms worsen.
- Unable to relax, stay calm and take it easy.
- Poor memory
- You can get a lot of complications from having such high levels of cortisol running through your body constantly. Kidney stones, future possible kidney failure. Liver issues, complications with your heart and easy bone breakage.
Those are the many, many things a Cushing’s patient has to deal with on top of gaining weight. So if you are just gaining weight and don’t have most of them symptoms or the beginning of these symptoms, you probably don’t have Cushing’s. If you still think you’re on the path to it, give it a few more months and keep track. They can develop out of no where and quickly.
I had blood tests done at 8am to track my cortisol levels at that time. 8am is where your cortisol is the most ‘active’. From there, I had a 24 hour urine test done. This test is important to track the 24 hour activity of your cortisol. ** Make sure you keep your jug in your fridge throughout the day!! Your urine will go “bad”otherwise and won’t generate the accurate results in the lab!! Also, make sure the nurse taking your jug at the lab writes your name and birthday on the jug before taking it to their fridge. I had trouble with my local lab for their lack of care and then was I blamed for it! Now that I know better, I’m sharing it with all of you! You can even do it yourself with a sharpie before you hand it to them. I was then to do a dexamethasone suppression test. This test consists of a certain dosage of medication to take around 10-11pm at night to then get your blood drawn the next morning at 8am to see how the adrenal gland functions through the measurement of cortisol levels and their changes. My doctor started off with 1 specific dosage and then a week later, I did a 2nd one. The way my cortisol changed reflected that the issue was in my pituitary gland and from there, I got an MRI done. If you’re a chicken like me, ask your doctor for a pill to help you relax before you go into your MRI. That’s how I found out I had Cushing’s due to a tumour growth in my pituitary gland.
It is a lengthy process but one that is worth it if you have Cushing’s. Once you get the diagnosis, you’re that much closer to getting a solution. Recovery is not speedy, it is not easy, but it is worth it. I hope this helped gain some insight into Cushing’s and a possible way an endocrinologist would go about diagnosing you.
If you have any questions about diagnosis, path to a diagnosis, procedure in how the tumour is removed, or even if you don’t have Cushing’s but know a loved one with it and want guidance in how to be as good of a support you can be, please do not hesitate to contact me! firstname.lastname@example.org is where you can always reach me! Simply just fill out the form below and I’ll get back to you asap!
Keep fighting the good fight. It’s tough, but we’re tougher.
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