Are PCOS and Cushing's Syndrome Related?

by Kristin

You've got a great, informative newsletter. I thank you for sending it to me this past year; it's chock full of healthful information!!!

I have a suggestion for something you could add to a newsletter, which may be VERY helpful to your readers -- something like "Are you sure you have PCOS, and not Cushing's? The two have very similar symptoms with vastly different treatment." I am not sure if you have covered this already in a previous newsletter.

It took me over 10 years to get a PCOS diagnosis - and now my most recent doctor thinks I may have Cushing's instead. I've already scored too high on cortisol levels in the first lab test and am awaiting second results.

I've done some preliminary reading and found that a lot of people with Cushing's (which is curable) received an erroneous PCOS diagnosis instead. Some doctors don't even think to test for Cushing's because, well, at least in my case, the symptoms aren't that strong (I don't have stretch marks all over my stomach, have only a slight padding of fat below my beck "buffalo hump", no facial hair - same reason it took me so long to get a PCOS diagnosis) and my doc said that only "1 in a million people" are diagnosed - but the current thinking is a lot more people have it but either don't get diagnosed or don't think to go to a doctor.

Or, as in my case, get dismissed by doctors (I have been going to random doctors for years for them to tell me I eat too much and don't exercise -- even though I used to walk 5 miles a day, hardly eat, and still weighed 190 pounds at 5'8"). My current endo didn't even think to test me for Cushing's until I pressed him.

So that might be lifesaving/life changing info for some of your readers.

I know you've covered nutrition. This might be interesting info for you-- I went from 200 pounds to 173 in a few months eating strict Paleo diet -- that also COMPLETELY regulated my period (every 31-33 days, l like clockwork) solely from eating that way (no starches, sugars, high glycemic fruits or vegetables, no dairy). Soon I gained 20 pounds back, which is what prompted me to think it wasn't PCOS but another hormonal disorder. I still get my period regularly though. I guess regulating the insulin regulates the period? Also some of your readers may be undiagnosed celiac or have undiagnosed gluten intolerance, so about 10 pounds of water weight can be lost if they stop eating starches.

Turns out I have celiac too but no doc ever thought to test for it until recently because I am tall, and don't have stomach upsets/diarrhea -- just hugely bloated stomach and sleepy after eating gluten. I am telling you all this in case it can help your readers. Maybe your readers think their bloated stomach is all PCOS related, but really it is gluten related (in which case Paleo is the way to go).

Another thing you may want to cover but haven't already is B12 supplementation with Metformin. Metformin can inhibit the absorption of B12 (and you know how important that is!) which can have pretty bad consequences.

OK, you may already know everything I told you but most of it was news to me, so I figured I'd tell you in the hopes that it can help your readers. If it turns out I do have Cushing's, I'm going to write about it!! (I wonder if it's possible to have both Cushing's and PCOS?)

Anyway, thanks for your time in reading this and thanks for all your good work.

Be well!


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by: Anonymous

Hi Belle,

What was your latest diagnosis? Do you have Cushing's? Please advise. I also have the same symptoms like you do. If you may reach me via jcoluco[at], that'll be great!


There's some overlap between PCOS and Cushing's
by: PCOS Editor

Hi Kristin,

Thanks for your thoughtful suggestions!

We have a huge backlog of topics to discuss in the newsletter. Cushing's has been on our list for quite a while. There's some overlap between Cushing's and PCOS. Of course, there are distinctions as well.

The fact is, many chronic disorders overlap other chronic disorders. What we are doing is applying labels to various collections of signs and symptoms. The labels are often oversimplifications. All chronic disorders have common elements.

Hopefully we'll talk about Cushing's in a future newsletter.

A paleo diet is quite effective for at least 50%-60% of women with PCOS. The diet in our diet e-book is basically paleo and does not include any gluten grains, soy, corn or dairy.

We've talked a number of times in the past about B12 deficiency and metformin. Anyone taking metformin for 6 months or longer should take a vitamin B12 supplement at least.

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