Driving With My Eyes Closed Due to Undiagnosed Cushings

I've had Cushings due to prednisone use twice (a.k.a. exogenous Cushings). This story is about the first time, when it went undiagnosed.

I'd been on prednisone off and on for years. Right before the Cushings started, I had mono, worked with kids and caught no less than 6 upper respiratory infections in a row. So this meant not only constant ER visits, but lots and lots of prednisone, both by IV and in pill form. I would literally finish the antibiotics and prednisone, feel better for a few days and then start with the next bug.

My doctor at the time told me that, because I'd only been on steroids for a short duration, I was fine. The problem couldn't possibly be the steroids. I was asking all the right questions as a patient, but all doctors ever gave me were wrong answers.

Meanwhile, my quality of life was in the toilet. I could barely function...for years. I would try to go for walks only to end up crying and begging my husband to go get the car. Too weak to stand, I would sit on the sidewalk and wait for him.

Since I am stubborn we did this for years; trying to exercise, but unable to find the energy for it and collapsing in tears as a result. Very frustrating. Especially since I'd been such an active aerobics bunny before all this happened.

When I drove, I would be so tired, I would close my eyes for 'just a second' while driving 70mph on the highway. All I wanted was just a few more seconds of sleep. I closed my eyes while driving every day I drove for years. It's a miracle I didn't kill myself or anyone else.

Of course I gained weight. I had the moon face. The upper back fat. I never got the stretch marks though. (Someday, when I have time, and if we ever finish this home remodel and can finally unpack all the boxes, I want to dig out pictures and show the evolution of Cushings on my face.)

I knew this wasn't normal. I knew something was wrong, but I had no idea what. This was before I had taken any anatomy or physiology classes. I didn't really know anything.

Eventually, I dragged myself to an endocrinologist. He did listen to me and took me seriously. He ordered some tests. He was thinking Chronic Fatigue but also wanted to check my cortisol levels.

Unfortunately, I did not know that Solu-Medrol was the same as prednisone. Right before I showed up to the lab, I had been in the ER and received Solu-Medrol via IV.

So the lab work was useless.

The endocrinologist called me, furious. I mean, he was frothing-at-the-mouth pissed at me for what was truly an innocent mistake. I was not the educated patient then that I am now. I didn't know! He yelled at me over the phone, thoroughly reamed me out and then hung up on me.

I think he was the first doctor to yell at me like that. Sadly, not the last though.

So I never went back. Never got diagnosed. Never got help. I gave up. He was the last straw. Too many doctors now had told me there was nothing wrong. I decided to believe them.

I didn't know what else to do other than keep driving with my eyes closed and praying some day things would get better.

The asthma that gave me Cushings eventually cured me, at least I assume so. I got sick often enough and needed prednisone on a regular enough basis that, over time, things evened out. It took about three years though and by the time I finally felt good, the cycle started over and I developed Cushings again.

While it was diagnosed the second time around, it still wasn't properly managed in my opinion. More on that another time.

I Wasn't Looking for This I Swear: The Lung Nodule May Be Relevant

I'm trying to get my notes together for the upcoming endo appointment. I just wanted the name of the test that was ordered for me to test for Cushings, but I was unable to complete because a) the endo who ordered it was an asshole and b)I ended up on prednisone.

So I stumbled onto this little gem in the process of looking up the test. (The name of which is low-dose dexamethasone suppression test by the way.)

Note the two bits in italics.

Ectopic ACTH Syndrome

"Some benign or, more often, cancerous tumors that arise outside the pituitary can produce ACTH. This condition is known as ectopic ACTH syndrome. Lung tumors cause more than half of these cases, and men are affected three times more often than women. The most common forms of ACTH-producing tumors are small cell lung cancer, which accounts for about 13 percent of all lung cancer cases,² and carcinoid tumors—small, slow-growing tumors that arise from hormone-producing cells in various parts of the body. Other less common types of tumors that can produce ACTH are thymomas, pancreatic islet cell tumors, and medullary carcinomas of the thyroid."

This means nothing but isn't it an odd coincidence? I have things growing in both the lung and the thyroid.

There are a lot of dominos lining up and they all criss-cross enroute to different destinations.

Am I alone in thinking this is kind of weird? That there's just too much going on?

Is it possible to have such disparate things all going wonky in one body at the same time with absolutely no inter-relationship at all????????? Inquiring minds want to know.

I wasn't even going to mention the lung nodule to the endo because my history is way too long as it is. I didn't think there was any possible way it had any relationship to what is going on hormonally.

Just goes to show, tell your doctor everything.

Now if I can just find someone who knows how to listen and actually wants to help.

Subclinical Cushings Syndrome...Or Things that Make Me Go Hmmmm

Look, I'm not saying I have Subclinical Cushings Syndrome or even Cushings Syndrome proper, but it would probably be prudent to rule it out at this juncture. At least from this patient's perspective.

The thing is, my gut has been screaming at me that something has been missed for a few years now. I'm not claiming to be a psychic or anything, but I always listen to my gut. It told me I had asthma when I was 12. It's been right more often than the doctors have (sorry to say).

So I don't know what's going on, but I have this uneasy feeling that we've missed something.

There are several things that have struck me as 'wrong' with the PCOS diagnosis.

I used to be a peer counselor for women going through infertility. I noticed I had nothing in common with them medically. They had mothers with PCOS, extended family with Diabetes. I have no family history. I even went back and asked third, fourth, fifth cousins--I was calling people who didn't even know who I was! You would think someone would have PCOS or Diabetes, but nope. No one.

These other women also lost weight with simple exercise and reduced calorie diets that were high in carbs. That boat sailed for me once I had Cushings (from prednisone for those who are new to this blog) and sank somewhere, never to return.

The fact I had Cushings previously has niggled and gnawed at me for a long time now. I don't think I came by my PCOS honestly especially considering I had cycles before the Cushings--everything starts with the Cushings. Some doctors have agreed with my hunch.

The other women with PCOS I talked to hyperstimulated and their ovaries 'blew up' with infertility drugs. I did multiple injectible cycles and barely grew any follicles. In fact, injectibles were a dismal failure. Although with IVF, I did end up with ovarian hyperstimulation syndrome, quite seriously too.

So anyway, I just keep reading, looking for ideas. Below is the research I've found recently. It has been helpful for me as a patient, as there are things in my medical history I hadn't thought to mention that actually might be relevant for my upcoming endocrinology appointment. (I will be posting the agenda for that doctor visit including my history, if anyone is interested in playing along at home. Also there are 2 posts coming up on my experiences with Cushings.)

The main point of the research is, if you have PCOS, be sure you are screened for Cushings because it is CURABLE. It's rare still and we all still probably have PCOS, but Good Lord, ladies a few of us could be CURED. It's worth the effort to get the lab work done.

(And actually I ran across a few studies talking about how Cushings is more common in Diabetes than previously thought. Looks like quite a few people should be screened.)

Here's the research. Links are provided to the source below each quote.

"With an estimated prevalence of 79 cases per 100,000 persons, subclinical Cushing's syndrome is much more common than classic Cushing's syndrome. Depending on the amounts of glucocorticoids secreted by the tumor, the clinical spectrum ranges from slightly attenuated diurnal cortisol rhythm to complete atrophy of the contralateral adrenal gland with lasting adrenal insufficiency after unilateral adrenalectomy. Patients with subclinical Cushing's syndrome lack the classical stigmata of hypercortisolism but have a high prevalence of obesity, hypertension, and type 2 diabetes."

Source

"In conclusion, we definitely need studies in putative high-risk patients for SCS such as women with PCOS." I can't find much other than this tid bit that says PCOS is a risk for SCS.

Source


"Recent studies, however, have reported increasing evidence that subtle cortisol production and abnormalities in the hypothalamic-pituitary-adrenal (HPA) axis are more frequent than previously thought.

In conclusion, an unexpectedly high prevalence of subtle autonomous cortisol secretion, associated with high occurrence of hypertension, diabetes mellitus, elevated lipids, and diffuse obesity, was found in incidentally discovered adrenal adenomas. Although the pathological entity of a subclinical hypercortisolism state remained mostly stable in time during follow-up, hypertension, metabolic disorders, and hormonal abnormalities improved in all patients treated by adrenalectomy. These findings support the hypothesis that clinically silent hypercortisolism is probably not completely asymptomatic."

Source


And here's the mother lode...other patients with PCOS who actually had Cushings.

"Clinical and/or biochemical hyperandrogenism with menstrual infrequency is found commonly in women with Cushing's syndrome. In fact, there are data to suggest that menstrual irregularity is linked to the level of glucocorticoid excess rather than to androgen levels.^[7] Ovarian cysts are certainly not discriminatory; they are present in almost half of women with Cushing's syndrome.^[12] It is also noteworthy that cysts, in isolation, do not predict the development of PCOS;

...the overlap between syndromes is large and, thus, screening tests are needed to exclude Cushing's syndrome .

Most importantly, all definitions of PCOS require the exclusion of other causes of hyperandrogenism; failure to do so increases the potential for misdiagnosis.^[1,7] Although the present case illustrates this risk on its own, we know of three other cases in which an original diagnosis of PCOS became revised to that of Cushing's syndrome ( Table 1 ). Upon curative treatment, all symptoms, originally attributed to PCOS, resolved. The diagnosis, treatment and management of Cushing's syndrome have been the subject of recent discussion in this journal.^[4] Here, we address the importance of correctly distinguishing Cushing's syndrome from PCOS to minimize the risk of misdiagnosis."

Source

Stillness in the Mind but Wheezing at the Depot

So guess what? 40mg and up of Prednisone turns me into a raving lunatic, that's what. I'm on 20mg now and whoa! what a difference. The hamster in my brain finally stopped running on the wheel.

Or maybe it died.

Regardless, I feel so much calmer. I actually slept for almost 8 hours.

Maybe I should have titled the blog...Pissed Off on Prednisone?

Unfortunately, I woke up wheezing this morning. I didn't even bother with the peak flow meter, just sucked down some Proventil and moved forward with the day. If I ignore it maybe it won't bother me.

I think the problem was I over did it again yesterday. We went to Home Depot trying to gather some supplies for a never ending home remodel. I toddler wrangled alone while the hubby did manly things with various power tools. So I had to carry the toddler--who was being especially impudent and contrary--and run after her. Plus there were smells in the air that I'm not sure belonged in my lungs; chemicals, wood, dust etc...

My knees stuck around this time, but the lungs began to act up. The gunk rattlesnake started slithering around in there (just on the right side as usual) and my oompff got up and left. I hit the wall and it wasn't pretty.

So I suspect that is why I woke up to a high pitched whistling wheeze this morning.

They told me it would take a month to recover. I didn't believe them, but I think I need to just recognize that I'm not quite at day 15 here of recovery and they were probably right.

Pills and Parenting

My husband entertained himself this morning by stacking my pills in a pyramid and snapping this picture on his phone while I was in the shower. I take a lot of pills. More supplements than prescription meds. Typically, they are all over the kitchen in the morning until I'm done taking them and then I pack them up and hide them in a cupboard.

As a parent, I have had to think about how I want to handle all the medical stuff with my daughter. Above and beyond the obvious safety issues.

I mean, duh of course I keep all the pills under lock and key--we use a baby gate and the toddler is never in the kitchen without us. They are stored out of reach. But I also have to consider, should she see me take them?

I decided no because I don't want her to ever try to model the pill popping. Toddlers are such mimics and I don't ever want her to play 'pills.'

As hard as I try to hide the pill popping, she still sees me sometimes. I often worry about the 'norms' I create for her as a chronically ill parent.

Some of them are good...

1. I eat a healthy low carb diet with lots of veggies. She eats the same food as me but also gets fruit and high protein dairy such as cheese, kefir or Greek yogurt. She may not eat everything, but she is exposed to veggies and flavors that most American kids are not. There's no bread. No cereal (which I believe is essentially poison no matter how much fiber it has). No crackers unless it's a whole grain low glycemic Wasa cracker. I make almond/flax/flour banana or pumpkin muffins for her and use 1/2 the sugar (I don't like to give her artificial sweeteners).

I don't sweat sugar either. Junk food happens and even as anal as I can be, I'm not going to be able to prevent it. Junk is so much bigger than me. She gets her share of junk food, but not at home. The only thing I haven't been able to avoid are chicken nuggets. She'll eat them and sometimes that has to be good enough on days when she's being picky.

There are things I would give her, but she won't eat them. Oatmeal. Pasta is hit or miss. Stuff like that.

2. I make sure she sees me exercise and I am pleased when she 'copies' me. "Look, mommy. I exercising!" The goal is get her into several different physical activities once she hits three so that movement is just normal to her. She's been a little sedentary lately but then she was sick for like 8 weeks and then I was sick so we have a reasonable excuse. Daddy is great about taking her to the playground in good weather and playing.

3.If she develops asthma (which is looking likely at this point) my experience will be an enormous help. She'll be able to avoid the pitfalls I fell into. (I was the first chronically ill person in my family and I got no support at all or help--I'll have to talk about that some time.)

Some of them are bad...

1.She is intrigued by my diet soda habit. Although I have completely stopped drinking Coke Zero (that was a major addiction) but there's still some diet root beer and orange soda around. I would rather she never start drinking any of it--I don't think it's healthy, but I am having a hard time giving it up 100%. I came to pop late in my life. I never drank it as a kid or young adult. When I graduated college and started working, I fell into the habit and I regret it.

2.She worries about me because I worry about her. Before I got sick, I spent a lot of time asking her "Are you okay, baby?" because her breathing was so dodgy. So now she does the same to me. "Are you okay mommy?" she frets when I hack. She kisses my boo-boos. She cries when the doctor takes my blood pressure and I now try to leave her at home whenever possible if I have a doctor's appointment. Partly to spare her, partly because it's just hard to have a conversation over her sustained screaming.

We also bought her a doctor kit and we play doctor at home to let her play out some of her anxiety. The home bp unit helps too--I let her push the button. We take her with us when we get shots so she can see it happens to everyone and that we're not afraid. I also found a girl's anatomy puzzle that goes from clothes down to bones and we talk about what bones, muscles, organs etc... do.

I spend a lot of time framing things for her. 'Mommy's cough is a good thing. It helps Mommy feel better' etc...

3.Not being present as a parent. This is the biggie. I'm sick. I'm tired. I don't feel well, but she still needs me to be Mommy. I try to rise to the occasion, but it is hard and I have some work to do to improve my parenting within the context of being chronically ill. Obviously, things improve as I improve, but I need to spend some time thinking about how I can be a great parent when I feel like shit.

Backsliding

Last night was not good. The lungs did NOT like the walking from the other day (I bet the little bit of nicotine I got didn't help either) and I paid for it.

Very tight. Waking up mid hack.

Suffocation nightmares. Dreaming of cyanosis.

All an indication that I am not breathing well in my sleep.

But I couldn't wake up. I was deep in what I call 'sticky' sleep. I was aware I was not breathing so well but I just couldn't get up for some reason.

Finally battled through the lethargy and took the rescue inhaler at 3am.

Spent the rest of the night feeling the muscles in my lower ribs cramp. Couldn't 'pinch an inch' this morning--the skin on my chest was taut. No audible wheeze though.

Woke up as tired as when I'd gone to bed.

Peak flow 400.

Trying to make it with just the albuterol inhaler.

Feels like a huge step back. Not what I was going for at all.

Well, poop on a Manolo Blahnik.

I'm Just Too Much Patient for You & You're Not Doc Enough to Admit It

I saw an endocrinologist a few months ago as part of my quest to manage the PCOS.

He believed I got fat and 'gave' myself PCOS. I tend to believe that science made me fat by failing to diagnose the PCOS for over 10 years and a medical, as well as societal, paradigm that urges people to eat lots of carbs laden with high fructose corn syrup, but whatever. He's not the first doctor who thinks I stuff my face and sit on my ass all day.

He didn't believe I'd had Cushings. This disbelief is so common, I don't get it--it's not like the treatment for Cushings is a lifetime supply of Vicodin and ER visits with a chief complaint of 'my ass hair is too long'. I had chosen him precisely because he was in the network that had diagnosed the Cushings so at least he was able to look up the records to see the data for himself (which thank God that was available to him).

He wanted to cram me into the Metformin box come hell or high water. He wanted to ignore my previous experiences with it going so far as telling me I didn't remember what happened right and that I was wrong. He assumed all my problems with Metformin were due to diarrhea without asking if I had diarrhea while on Metformin (I didn't.)

Basically, he left me no place to go with him. By the time someone is denying me the credibility to report what my own body experiences, there's just no hope for a good working relationship, you know?

We also had discussions that went like this...

"You should take iodine."

"Okay, how much?"

"Just whatever is in your multivitamin."

"I don't do multivitamins. I take everything separately for a few different reasons. How much iodine should I take?"

"Don't take any."

***
"You really should take Metformin. There is no way you had any problems with it."

"Okay. I'm game. How are we going to ensure it's truly safe for me?"

"Well, I'm not going to prescribe it."

***

"I'm not going to prescribe spironolactone because it exacerbates the estrogen dominance of PCOS."

"Oh okay. I didn't know that."

"But if the dermatologist wants to give it to you that's okay."

WTF? That is NOT what I'm looking for. I went to this ass precisely because I don't want every Tom, Dick, and Harry treating separate symptoms of PCOS as if they aren't related. I don't want someone to prescribe something for me that is NOT a good idea for PCOS. This was the WHOLE point of seeking the care of an endocrinologist, to get coordinated care.

I think I was simply too much patient for him. It was clear he didn't want to deal with me. He was quite condescending and visibly irritated with me and my questions. He actually had the balls to tell me I was 'going in circles', when he was the one saying yes then backtracking to no.

His ideas were incredibly rigid I thought--he was a specialist living in a very very small box. 'You have PCOS. This is the treatment regardless of your personal circumstances or medical quirks. Nothing you say or experience matters. Just sit down, shut up and take Metformin. I do not care if it kills you because I've decided you are a liar. Goodbye.'

How is that practicing medicine?

Last year, I tried another endocrinologist and that visit can be summed up as follows.

"We don't know anything about weight loss, but you eat too much. I will not do anything for you. Goodbye."

It's not going well over here on the endocrinology front. Everyone focuses on the weight, when that is NOT the entire picture. Of course, they scoff when I tell them weight loss doesn't do much. Still annovulatory with horrid lipids. Because I guess all patients are too stoopid to ever be listened to. Do some people lose their souls in medical school? I wonder sometimes.

So now, I have an appointment at a world class system that is known to be pretty detail oriented. I did IVF there. I'm hoping I can find someone who wants to find answers and who can think outside the damn box for once.

Granted, there may be nothing more to be done for the PCOS, but the prednisone=low blood pressure thing needs to be looked at and the enlarged thyroid needs to be properly assessed for Hashimoto's, which has not happened even though I was given that diagnosis. Ironically, going by their lab work--the diagnosis of Hashimoto's is not even supported by the lab results.

So WTF BBQ people? Get it together! Please! I am counting on you. Yes, you to bring your A game. Otherwise, take your stethoscope off and go home and stop fucking around with my health.