Thin Cyster feeling Misdiagnosed

Camisado · 06-25-2008, 10:33 PM

I feel misdiagnosed with PCOS, I really feel like I have something much more severe going on, plus I do not really fit the PCOS criteria for the following reasons:

1. I'm very thin, yeah yeah thin cysters exist.....but most of them just have amenorrhea & cystic ovaries..... although central belly bloat made go from 98lbs to 105lbs. Woopydoo......my symptoms are so severe and diverse...I just don't and can't relate to them.
2. My androgen tests all come back within normal limits; DHEAS even came back on the low side.....despite adult-onset acne (severe)
3. I am not IR.
4. I do not have skin tags, nigricans, or heavy flows.
5. My menses ceased after 2 doses of Megace ES; before being treated with that CRAP I had normal menses, perfect skin, and no symptoms---I was healthy and happy.

My docs ruled out LOCAH, Cushing's, Thyroid disorder.

Which leaves 3 potential diagnoses...

1. Premature Ovarian Failure - I don't think I have this because my estrogen levels are slightly high.
2. PCOS - I don't believe I have this because of the reasons mentioned above
3. Adenoma - This is the only thing left I can possibly think of that could be happening. Whether it's pituitary, adrenal, whatever...... I'm just really frustrated...

ChelNY · 06-26-2008, 03:57 PM

what symptoms do you actually have?
will your Dr do the test to rule out adenomas? i think i had an MRI to rule out pituitary adenoma.

ihasaflavor · 06-26-2008, 05:51 PM

Hi there,

I understand where you are coming from. I was diagnosed last year because of 3 missed periods (which had been like clockwork beforehand), and I never had any of the symptoms (hair, acne, etc), and have never been overweight. But the doctor did a vaginal ultrasound and found cysts, and he was very surprised. Luckily I have been on birth control, and that has helped with regulating AF. Some symptoms are very mild, so if your doctor has not done an ultrasound to confirm the diagnosis, I would advise it.

framin_memories · 06-27-2008, 12:38 AM

I was diagnosed in 2002. I was thinner at that time (around 120/125, size 4/6). The only symptom you could "see" was the absence of AF. I did have cystic ovaries. This last round of tests (Sept 2007) showed that all my hormones are within normal range (on ob/gyn I was seeing only tested testosterone..which was "normal" but at the high end of normal). The RE did a larger panel of bw. HOWEVER, a woman with PCOS can have "normal" ranges. You have to see if you are at the higher end of normal. That, along with the other symptoms, can still lead to a diagnosis. I am not IR either.

That being said, remember it's a syndrome so you won't have all of the symptoms. It's a diagnosis of exclusion, not inclusion.

HTH~

Camisado · 06-27-2008, 02:07 AM

I suppose an ultrasound would be in order. I see my ob-gyn on Monday, and I'm sure he'll order a bazillion tests.

What confuses me is that before my periods ended, they were every 5 days for 3 months straight. I literally menstruated twice a month. Then, all of a sudden, they became less and less frequent, until they stopped altogether.

If they find multiple cysts on my ovaries, that's the end of the road - diagnosis PCOS. Am I right?

Or could other things cause cysts on the ovaries?

I feel like I'm screwed if I have PCOS, because hormonal prescriptions got me into this mess, me and metformin don't get along, and my liver is already compromised because I'm on Klonopin (trying to come off of it)....which leaves actos & avandia out. If I do have PCOS, I am thinking about starting Inositol and maybe considering a procedure called Diathermy, more info on that in the thin cysters board.... it's like ovarian drilling except they just cauterize it instead, making it less risky... but I really don't know what to do in the way of treatment...

But...I just don't know what is wrong with me yet. A RE diagnosed me with PCOS without performing any tests, and that really pissed me off.

I had a transvaginal ukltrasound when I was 18, a few years before any symptoms showed up - and it showed a small, "normal" cyst on one ovary, and because I had regular periods, perfect skin and no symptoms at the time (3.5 years ago) they considered the cyst to be normal...

I feel so very hopeless, I could really appreciate someone to talk to....I have no friends left....and my boyfriend, I am sure, is sick and tired of hearing me whine all the time...

For those of you who asked about my symptoms, they are:

-Amenorrhea (last cycle over 6 mos ago) which began as too frequent periods
-Cystic acne
-Anxiety, depression, mood swings, and extreme panic attacks
-Insomnia despite major fatigue
-Headaches, unrelenting, occuring usually when I have an acne breakout
-Belly bloat
-Feel like I need to eat all the time even tho my appetite is suffering
-Weakness
-Tachycardia (heart has beat well over 180 bpm for no reason in the past)
-Blood pressure spikes that occur about once a month and last for a day or two
-Two of my back molar teeth literally disintegrated and now there is nothing but a hole where they used to be...despite normal calcium levels

Also my TSH is normal and my cortisol is only borderline high....doesn't leave much to work with...

I do NOT have hirsutism, skin tags, athicos nigricans, buffalo hump, obesity or diabetes....

Purple_monkfish · 06-27-2008, 01:00 PM

Before I was diagnosed, my only symptoms were:
Excessive hair on belly and one annoying chin strand (grrr grrrr)
very very rare skin tags
and the biggie, unbearably painful agonising afs. (which incidently isn't considered a pcos symptom)

Doc thought maybe endo, maybe pcos, maybe something else. Did several tests and came back with my blood results, indicitive of Pcos. Now, i'm a thin cyster, till about 6 months ago I had regular periods. I was started on metformin and it WORKED. God knows how or why, but it did. I even fell pregnant which was fairly amazing.

It seems odd to diagnose you without any tests. On the 2nd of July i'm going in to get more tests done, a good 3 or 4 years after my initial diagnosis. Why? because my symptoms have changed.
My last blood test result came back with ridiculously high levels of LH and next to no FSH so yeah, that's not a good sign. Still, we'll see.

I'd definitnely demand some tests. Blood tests and an ultrasound should confirm pcos, they should also be able to work out if there's something else going on.

I don't have the diabetes (in fact my blood sugar tests all come back absolutely normal), weight, nigricans etc etc either so if it IS pcos then fear not, we all exhibit completely different symptoms. As I said, my main symptom wasn't even something generally associated with pcos! go figure.

If you don't feel you've got the right diagnosis, GO demand more tests.. hell, demand tests in general. It seems very unproffessional to diagnose without making sure.

I agree with you about the hormone treatments btw, they make me feel awful. Last time I took progesterone I bled so heavily I ended up in A&E convinced I was bleeding to death (eek) and bcp makes me sick.

Camisado · 06-27-2008, 03:26 PM

See, the skin tags seem to be a sure-sign of PCOS, along with hirsutism, neither of which I experience..

If you don't mind my asking, how did your AFs become irregular? Too frequent? Skipping them?

What happened to me was I having periods every 4-5 days for 3 months. Got on all kinds of hormones to break that cycle, developed panic disorder and cystic acne in the meantime, and then finally when I began using progesterone cream for about 3 weeks total my periods went from every 5 days to once every 4 months, then once every 6 months, and now even longer than that.

I would assume that because your LH is so much higher than your FSH that would completely rule out Premature Ovarian Failure, so yeah I'd think your doc is right.

I am going to a new OBGYN and my mom sees him and she's sure he'll run a lot of tests on me.

If only Metformin agreed with me, this wouldn't be such a problem

I just feel like if I do have PCOS, there's nothing I can do about it...

Purple_monkfish · 06-27-2008, 06:26 PM

cass> in Janurary I had an af... then three months passed with nothing.. nada.. occassional light spotting but no actual af appeared. Come May 1st af came, it was light and a bit of a non event. I'm 22 days late now.. again... -_-
Basically, the doctor thinks i've ceased ovulating so i'm being sent to a gyocologist for tests.

Thing is, till Janurary I always got af every 35 days. Ok there could be a little variation but usually only a week at most. It was fine fine fine then BAM no more af. Bummer aye?

I take metformin and you know, it used to work.. it worked SO WELL. I thought it was a miracle pill. Now it doesn't seem to be doing jack. A shame really, I was one of the few lucky ones who didn't get the nasty side effects. Curses. I'll have to find a new solution.

Hope you get a definitive diagnosis soon! nothing is worse than not knowing.

Camisado · 06-28-2008, 04:50 AM

You mean Jan 2008? Or 2007?

I wonder why Met stopped working. Tat's REALLY odd. Do let me know what your doc thinks of that...

Purple_monkfish · 06-28-2008, 05:52 AM

cas> 08, so it's only been the past few months but yeah.. it is really really odd. My afs started getting irregular and then just... stopped. Apparently sometimes having a kid can make pcos symptoms worse (or better paradoxically) so maybe that's the reasoning.. I dunno. Fingers crossed I find out on the 2nd

framin_memories · 06-29-2008, 12:21 AM

just jumping in again...my first diagnosis did not involve any bloodwork. It was based off my history of no AF and my trans u/s which showed the string of pearls. I have always had wacky periods (could easily go a year without one..but when you're young, who cares, right?). I was put on bcp to regulate it and now do that to "quiet" my ovaries since with PCOS they seem to be in a "stuck" state of enough hormone to cause cysts but not enough to make them mature and rupture.

I didn't have any random hair anywhere till my mid-twenties and din't have a skin tag till after I had DS (I noticed about 2 or so years ago). I was 125 lb till I had DS and now hover around 135 (based more off working out less and eating HORRIBLY).

You have to be careful when thinking ahead about treatments. PCOS affects every woman so differently. Some women swear by metforminn (I did not like the SE at all!), others can get pg on clomid each and every time, some never have weight issues...it is such a "potluck" of what might and might not happen. I would just wait and see what the dr comes back with and then form a plan.

Camisado · 06-29-2008, 04:08 AM

I'm really frustrated. I mean if PCOS is a diagnosis of exclusion, why do they just go along with it if you have the cysts and irregularities? I'm sure there's conditions of the endocrine system that could also cause those types of symptoms.

I guess my biggest problem with whatever it is that I'm experiencing is Panic Disorder.

Before any of this started, I was not only independent and dignified but I was a socialite and generally happy with my life. Ever since my hormones started bubbling up with cysts on my (once perfect) skin and my periods started happening every 5 days until they stopped completely, I literally get a jolt up my spine several times a week and I fall to the floor and panic for at least 20 minutes straight for no reason at all, I have crying spells over the most insignifcant of things and I've been suicidal for at least a year now... whatever is affecting me is affecting my brain - bad.

Panic Disorder is closely related to seizures, and my neurologist doesn't believe I have epilepsy however he's gonna test me for it anyway. I do know that some forms of epilepsy are associated with PMS, but I have these "attacks" and mood swings 24/7.

I know some women personally who have PCOS and they do not exhibit the above phenomenon, they all tell me I sound like I'm going through a bad menopause or something, but my symptoms seem to be more "quality-of-life" debilitating than PCOS.

BRbangle · 07-01-2008, 02:50 PM

Camisado, have you had a CT scan of your adrenal glands? My regular doctor ordered this for me, due to high testosterone levels. The results specified that there were no masses or signs of hyperplasia on my adrenal glands. Knowing this really helped lessen my fears of having LOCAH or any other adrenal abnormality.

So, your estrogen levels are "normal." Have you ever had your progesterone level checked?

Camisado · 07-02-2008, 03:32 AM

Quote:

Originally Posted by BRbangle

Camisado, have you had a CT scan of your adrenal glands? My regular doctor ordered this for me, due to high testosterone levels. The results specified that there were no masses or signs of hyperplasia on my adrenal glands. Knowing this really helped lessen my fears of having LOCAH or any other adrenal abnormality.

So, your estrogen levels are "normal." Have you ever had your progesterone level checked?

I never said my estrogen levels were normal. The only hormonal testing I have had was saliva testing and the results were slightly elevated Estradiol, normal progesterone, VERY normal total T, and low-normal DHEAS. LOCAH was ruled out many times, my Prolactin was normal except for one blood result which came back 10 units too high, and a 24h Urinary Cortisol revealed borderline high cortisol levels which the doctor attributed to stress.

Ironically this allergy season I didn't need my depo-Medrol shot to control my severe asthma and other allergy symptoms - it's as if I had enough damn cortisol in my body to keep me breathing freely - this, after being born with such severe seasonal allergies unresponsive to anything but long-acting steroids and not able to leave an air conditioned room from late April to early July. Nope, not this year. This year, it's like I don't have allergies. But you know, my cortisol levels are only "borderline" high. Must be stress. :eyeroll:

To answer your other questions...
I have a transvag/regular ultrasound next week, after which, I am requesting an adrenal ultrasound.

When I was 18 and symptom-free, I had one small cyst on my ovary but was told it was normal in nature and that cysts are supposed to occur (not multiple ones, just one). Like I said, my skin was flawless, I was happy and healthy and regular at that time so yeah.

Thank you for talking to me, really. I feel really isolated, misunderstood, I feel like no one listens to me at all.

My quality of life has been so diminished that I almost feel like saying, "OK GOD, I GOT THE MEMO, YOU DON'T WANT ME TO REPRODUCE," much as I always dreamed of being a mother. It's not worth the anguish to me.

BryBrensmom · 07-02-2008, 03:29 PM

Nova--

Rest assured that you are not the only one that has the Panic Disorder added to the top of things. I also suffer from panic attacks and anxiety that is so debilitating at times that I don't want to leave the house. Pretty hard when you're running 2 businesses and have 2 kids. None of this started for me until after the birth of my 2nd child. It was like somebody hit a switch and I was thrown into hormonal hell. I have had all of the tests and have still never received a definitive diagnosis. When I last had my test. checked, it was 88--Dr. told me that it "wasn't that high" and that some of the wierd things that I had been experiencing were "normal". Wanted to put me on BCP's to alleviate the symptoms......In my opinion, you're on your own.....The ladies here are great for support, but in the end, it's just you....maybe you should try a more natural approach to things? I am currently taking saw palmetto and licorice (both suggestions that I found here) and I do think that it is making a difference.....I also take a ton of other supplements/vitamins.....I would be glad to share, just let me know if you are interested.
Brandy