Any advice for CT scans, PCOS, or adrenal issues?

October 19, 2010 5:44 PM

Dealing with possible PCOS, adrenal issues, and CT scans. Any advice?

I've been working with my doctor trying to determine the cause of symptoms I've been having. They've been leaning towards PCOS because I have a high level of testosterone, hirsuitism, and heavy periods.

The latest test was a DHEA-S blood test. It came back very, very high, around 850. Now they're concerned about my adrenal gland and has scheduled me for a CT scan. This seems like a big deal. This is the biggest medical issue I've dealt with. I'm in my mid-20s.

1) Does this sound more like an adrenal disorder like Cushing's than PCOS? I've been googling, but that's led me to lots of fear-mongering about cancer. I'm trying to avoid too much worse-case scenarios before my scan. I know that the symptoms of both disorders are similar.

2) What is it like getting a CT? The nurse offhandedly mentioned that I'd have to pick up some white liquid and drink it. I take it that's the barium, but... Could anyone explain what having a CT scan is like? I'd feel better if I knew what to expect.

3) Any other advice regarding PCOS or adrenal disorders?

posted by anonymous to health & fitness (14 answers total)

I know a Wikipedia amount about PCOS but I had a CT scan last week [for sinus issues] and it was a really straightforward event. Very simple. I took off my earrings and barrette and nose ring, lay on a narrowbench thing with my head in a little cradle. The tech positioned me so that I was in the right place and then for about five minutes I lay there and the machine made little noises. I didn't have to take any contrast dye stuff but I've just heard the stuff is chalky and a little gross, but otherwise no big deal. Here is a web site that describes what a CT scan is like.

Usually people who have a hard time with body scans are having MRIs which involve getting stuck in a little tube while the machine makes loud noises; these scans can be scary, even if you're not very claustrophobic. CT scans are generally easy and there's going to be a tech there who you can ask questions. Mine literally took about ten minutes from the time I showed up in the room til i was walking out the door.
posted by jessamyn at 5:50 PM on October 19, 2010 [1 favorite]

I can only answer the CT scan part, but when I had mine, it was pretty easy. They had me drink the contrast liquid, then I went into a room with the scanner. It looked like a big doughnut. They put me through the scanner, which essentially involved me sliding back and forth through the doughnut a few times. It wasn't too bad, and I'm incredibly claustrophobic, so that's saying something. The liquid was the worst part, actually - the taste and texture were kinda gross, but other than that, it was no problem.
posted by bedhead at 5:52 PM on October 19, 2010

PCOS is generally diagnosed with a simple fsh to lh ratio, and is mostly managed via drugs. I'm afraid I don't know much about Cushings and wish you will.
posted by moof at 5:54 PM on October 19, 2010

I don't know much about PCOS or adrenal disorders, but I've had three CT scans. One on my neck, one of my chest, and one of my pelvis and abdomen. The "white liquid" is likely some sort of contrast medium. These can be delivered various ways; in all three I had the contrast done via IV, and with the pelvic/abdominal one, I also had to drink about a liter of a contrast medium dissolved in water (it was virtually tasteless). The worst part was getting the IV (I have bad veins). When they inject the contrast (near the end of the scan), you get a sudden warm feeling primarily in your nether regions, which they warn you about.

The scan itself is easy. They usually last about 10 minutes. You maybe asked to partially disrobe depending what you are wearing, and put on a gown. Then you lay down on a sliding bed that will move you into the CT machine. Usually you are offered a blanket. Then you move into the machine, which is a big round ring/tube (but more open than an MRI). It will slowly move you until the appropriate body part is aligned in the proper placed, then it will move you a little more back and forward as they do the images. You may be asked to hold your breath at certain times, then let it out. This may happen for three or four cycles. When it's done you may be asked to wait a few minutes while the radiologist look at the images to make sure they are done correctly. If you have an IV, they'll take it out, you get dressed and then you are done!
posted by kimdog at 6:08 PM on October 19, 2010

This is a pretty sober rundown of CT scanning that doesn't get into anything specific or scary about particular conditions.

I had two non-contrast head CTs 10 years ago and they were boring and quick. (For comparison, I had three runs of MRI brain imaging with contrast this year and that was an hour and 15 inside a very small tube while feeling sorta weird from the gadolinium.)
posted by fairytale of los angeles at 6:17 PM on October 19, 2010

I have PCOS. I'm guessing that they want to CT scan your adrenal gland to rule out anything major. As moof mentioned, PCOS can be managed with drugs but the drugs certainly don't eliminate the symptoms, but they can lessen them considerably if you take the right ones. I wish I knew more of your symptoms, which would help me to determine whether they are not they are related to typical PCOS. If you'd like to email me to discuss privately, I'm at georgiabloom at gmail dot com. Best wishes for good health and courage for your tests.
posted by georgiabloom at 6:23 PM on October 19, 2010

IANAD, but I do have PCOS.
1- PCOS is a syndrome, which boils down to "a label Dr.'s use for a group of symptoms." When I was diagnosed my doc explained that it's never a concrete type of thing, they have a list, and if they check off a certain number of the boxes they call it PCOS. Metabolic disorder is often related. It's possible you have PCOS symptoms because of an adrenal issue, which is why they are testing that, I suppose. They want to rule it out. I imagine it depends on which Dr. you talk to whether you have PCOS or Cushings.
2- I've also had a CT scan with the barium contrast. It's nasty nasty stuff, but I've always had a hard time with liquid medicines, etc. My scan was for appendicitis, so not exactly the same, but it was no big deal. I actually don't remember the scan itself, which tells me it wasn't that traumatizing. But that chalky milky sh*t, that I remember.
3- If it's decided that you have PCOS, it usually managed by meds. You want to keep careful watch over your diet, as it can be linked to diabetes (more specifically insulin resistance, which can become diabetes) and heart disease. I would check out the Soul Cysters site to help calm your fears. They seem to have a good forum, too, though I've not spent any time there.
posted by purpletangerine at 6:44 PM on October 19, 2010

PCOS is generally diagnosed with a simple fsh to lh ratio, and is mostly managed via drugs.

When I was diagnosed, none of my labs came back as especially abnormal. My gyno diagnosed me based on a collection of symptoms (existing insulin resistance diagnosis, adult onset acne, hair loss, wonky menstrual cycle) and said that in his experience, many of his PCOS patients are "normal" on paper but still benefit from being treated.

My endocrinologist at the time wanted to explore the possibility of Cushing's also, but my insurance company refused to pay for the testing so that went nowhere.

I didn't have to drink the contrast when I had my CT; mine was injected. I will be forever grateful to the tech who told me that some people at the time of injection will flush and then feel like they are about to lose control of their bodily functions - turns out I was one of those people. If this happens, don't worry, you *don't* lose control - you just feel very, very strange for a short time.

As far as management of PCOS symptoms - for a time I took spironolactone, which caused incredibly awful breast pains (an odd, but not unheard of, side effect). I tried generic Metformin, which caused gastrointestinal upset, then switched to brand-name Glumetza, which I tolerated well. Combined oral contraceptives helped with the symptoms but caused depression and increased anxiety; I now take a progestin-only pill, which has helped the irregular bleeding considerably. But in the end, I found that controlling my IR and PCOS via diet was the best option for me - there's a lot of info on the web about low-carb eating plans and PCOS.

Best of luck to you. Getting diagnosed took me years and was full of frustration - awareness of the condition has grown in recent years, and I hope this allows you to have an easier time.
posted by chez shoes at 6:54 PM on October 19, 2010

1. Sounds a lot like PCOS, but keep in mind that PCOS is used as a catch-all diagnosis for those sorts of symptoms when they can't think of anything else that might be causing them, even if you have no cysts on your ovaries.

2. I had a CT scan to rule out adrenal problems en route to my PCOS diagnosis as well.

The barium I had tasted like banana, and it really made me feel nauseous. Luckily, that ended fairly quickly once I managed to choke it all down.

The needle they put in your arm during the scan itself is also sort of creepy, because it makes you feel this hot burning sensation in the back of your throat and in your crotch. Don't worry, this is normal, and my doctor warned me in advance so it was easy to deal with when it came.

The actual scan itself is nothing much. Can't really remember that bit well at all. I was too busy trying not to move from laughing over the weird heat sensation.

3. Don't panic! I highly recommend reading The Savvy Woman's Guide to PCOS: The Many Faces Of A 21st Century Epidemic... And What You Can Do About It by Elizabeth Lee Vliet. That should help answer a lot of your questions, and give you a better sense of what questions to ask your doctor. It's definitely a favorite among most of my friends with PCOS, too.
posted by Eshkol at 6:59 PM on October 19, 2010

I've had two CTs. Each was a chest/abdomen/pelvis scan. One as an inpatient, one as an outpatient. I'll describe the outpatient time.

I picked up the barium constract drink a day before the scan. I think I was told to start drinking a few hours before but only to drink half. The bottle is about a quart. The other half would be drank after I arrived at the radiology place about an hour before the schedule scan. They called me in soon after I arrived. I undressed into a gown. As I waited, I drank the rest of the drink.

The drink is quite thick, like a thick milkshake. The drink has to be refrigerated too, so it'll be chilled when you're drinking it. Mine was banana-flavored. (I had a choice between berry or banana. As an inpatient, it was orange flavored.) It's not pleasant to drink, but it's not horrible. The flavoring only helps so much. There's not really a bad taste, but to me, it felt like drinking/eating something that wasn't food. (It's not food.)

For me, the thickness was what made it hard to drink. Protip: you may have better luck using a straw. That way, the whole drink doesn't come down on your face as you tip the cup. (A nurse taught me that. A different nurse on a separate occasion said it wouldn't help. He was wrong.)

When it was time for my scan, the nurse had me finish up the last of the drink quickly. I didn't finish all of it. I came close, but she said it didn't matter.

She had me lay down on the board, and put an IV in me. (I needed IV contrast.) The scanner is like a big donut. It's maybe a foot deep. It's not closed in at all like the MRI machine I had had before. She positioned me by moving the board, and then put the IV contrast in. You can feel the IV contrast moving through your body because it feels warm and tingly. It's quite odd, but not really unpleasant.

5 or 10 minutes later, I was done. Got dressed. Left. The End.

Oh yeah, and when you shit out the barium drink, it comes out the same way it went in. That's when you know it's really over.
posted by aloysius on the mixing boards at 7:13 PM on October 19, 2010

This group offers a free initial (phone) consultation and various teleclasses and other info on a natural approach to treating/living with PCOS: Laughing Sage Wellness Group (I am not affiliated with them and do not have PCOS, but I went through their women's health program a few years back and had a good experience.)
posted by hansbrough at 8:04 PM on October 19, 2010

Protip: you may have better luck using a straw. That way, the whole drink doesn't come down on your face as you tip the cup. (A nurse taught me that. A different nurse on a separate occasion said it wouldn't help. He was wrong.)

It depends on the person, I don't use a straw as it makes drinking it take longer and I can not stand the taste of it.

I have had 10 CT scans in the past couple of years while dealing with having kidney cancer. The barium you have to drink sucks but, you can do it. I think of other things and down it as quick as I can. The colder it is the better.

After the scan you will want to drink more fluid than normal to flush the contrast out of your body. The scan itself will only take a couple of minutes, and is no problem at all. Good luck and I hope it is just something simple.
posted by SuzySmith at 8:41 PM on October 19, 2010

1. Stay away from Dr. Google, at least until you have a definite diagnosis.

2. PCOS is not that bad on the scale of things to have. Lots of people have it, and once you get it nailed down that it's probably PCOS, then you'll have a course of action, probably medicine, and you'll start feeling better soon.

3. Even if the medicine you take makes you sick to your stomach at first (happens to a lot of people with Metformin; the name brand is often better), if you can tough it out for a few weeks you'll be fine.

4. Cushing's, cancer, anything else, much less common. But even if you figure out you have them, you will be MUCH better off knowing now and starting treatment so you feel better soon.

5. You will be fine during the CT scan. If you get nervous, tell the nurse or the radiologist you're nervous. 90% of the time they'll be awesome and super helpful. And 10% of the time you'll get some jerk who doesn't get it, and then you can distract yourself from feeling nervous by being annoyed at the jerk who doesn't get it, and then the test will be over.
posted by faustessa at 9:51 PM on October 19, 2010

Ano,

Sorry for my resuscitation of this ol' post of yours, but I wanted to tell you that I am in the exact same place as you. I am going to the endo. early next week in order to get the details for my ct-scan and results of the latest bloodwork. I've been researching this myself for a while My testosterone is low, but my DHEA-S is around yours. Everything points to an adrenal issue. I hope you'll make an update, and if you want to chat off MeFi, drop me a line.

All the best!
posted by Bravocharlie at 2:18 PM on November 26, 2010