Not really a newbie..but...well *sigh*

Matdredalia · 11-11-2004, 06:37 AM

Hi all,

I'm having some problems, and I was hoping ya'll could help me out a bit....

I was diagnosed with PCOS a little over two years ago when I was 15. My doctor told me that it was because of my wieght, said it would go away when I lost wieght, put me on the pill, and we didn't really speak of it again until about a year later.

A friend of my moms mentioned she had PCOS, and my mom's ears perked up. My moms friend clued her in on the basics of PCOS and referred her to a long list of websites.

That's when my mom and I started doing our own researching and started to push my doctor to do more. He put me on aldactone for a month, and we never spoke of it again. Two weeks ago, he put me on Metformin (finally, after my mom and I had been asking him to do so for a YEAR!), and sent me on my way yet again, except he had me do some blood work, which isn't anything unusual. I get my viens emptied every time I go in almost. (A few days later, my mom had to take my brother in for some tests, and while she was there, the nurse informed her that my thyroid has completely shut down and put me on a prescription for that).

Two years after my diagnosis, and I still feel like I'm at day one. I'm not sure what to do about all of this, becuase it doesn't really seem like my doctor is doing all that he should...so...I was hoping someone could give me some suggestions on what to ask my doctor to do.

I'm seeing him this Friday, and here's the things I'm planning on talking to him about:
I'm asking him to refer me to the "local endo" (4 hours away is as local as it gets lol)
I'm asking for all of my medical records from the time he diagnosed me forward. I want to see what he's tested me for, what the results were, etc.
I'm also planning on talking to him about a diet plan, because any time I've brought up nutrition, he has just kind of blown me off
Working with me to get the right balance of medication, because after starting on the met & the thyroid meds, I've been much more depressed than normal, which for me is extremely bad.

Is there anything else I should ask him about? I can always find information on things to ask before you're diagnosed, but I'm having a really hard time on things I should be asking him to do now.

And one other thing I was wondering about is: are all PCOS patients tested for cysts? I've never had an ultra sound done for them, and I'm not sure if the blood work would show that, so I'm wondering if that's something I should bring up as well.

Thanks for any help you guys can give me. *HUGS*

bethers · 11-11-2004, 11:44 AM

Mandy,
I sorry that you have had such a fight with your dr to get some treatment. Finally things are looking good for you

That looks like a good list of things to talk to him about. One thing I would recommend is getting a referal to a nutritionist (somone who knows about PCOS would be best) as they would probably be more helpful than a GP.
What dose of Met does he have you on? Are you gradually working your way up?

isadora · 11-11-2004, 11:54 AM

Hey Mandy,

I would highly recommend getting a new doctor, especially if the one you are going to won't refer you to an endo. Sounds like an endo is the route you need to be going. It also sounds like your doctor while he is doing some isn't completely up to speed on the diagnosis he gave you and how to treat you for it. Depression and thyroid problems are both symptoms of PCOS. I was diagnosed about a month ago after having a long history of irregular cycles and docs who didn't think anything of the fact that i was going months at a time without a period and would just say "some people it's like in their genes to be irregular and that's how they will always be". Wasn't a good enough answer for me but I didn't know about PCOS, so I didn't know what could possibly be my problem. I actually was diagnosed with an ovarian cyst when I was 17 and put on BCPs which i have been on since with only one break. I had an ultrasound done a few months ago while still on BCPs and apparently didn't have the classic "polycystic" appearance that is a sign of the syndrome but then again I don't know if the BCPs maybe had something to do with that. anyway..that wasn't included as part of my symptoms for PCOS. So, no not all patients have the cysts nor or all of them checked for them. I would talk to your doctor too about seeing if you can get referred to a nutritionist i the area if there is one to help you start eating healthier.

Tracy

CathyWood · 11-11-2004, 08:49 PM

Hi Welcome to SC. Glad you found us. Feel free to contact me if you wish. See you around.

Matdredalia · 11-12-2004, 12:34 AM

Hi guys, thanks for all of your suggestions

I'm going to talk to my Doc about referring me to a Nutritionist tommorow, and I'm going to ask if I should be tested for cysts or not. Not that I have much faith in him. *Sigh*

If he won't refer me to the Endo, I'm going to find another Doctor. He tried to refer me to a Teen Gynocologist, but I looked up this "Teen Gyno", and PCOS wasn't even on her list of proficiencies, whereas not maybe 10 minutes away from this Teen Gyno, there's an Endo who specializies in PCOS. As far as I'm concerned, if I have to drive four and a half hours to see someone, I want to see someone who *KNOWS* about what I have and can help me.

As for my dosage of Metformin....the prescription bottle says they're 500 MG tablets, and I take one-half a tablet a day. So....250 MG I believe. I'm not really sure if my Doctor is going to have me work up from there or what. I'm asking him tommorow though. I'm getting really fed up of him writing prescriptions and not talking to me about them.

He has a tendency to put me on medications and not explain WHY I'm taking them.

So, I'm printing out a nice long list of topics to discuss tommorow, and we're going to sit down and talk about this. I'm sick of being jerked around.

Thanks again for all of your help guys

Hopefully after tommorow my Doctor will stop being a boob.

glowingpurpleaura · 11-12-2004, 12:43 AM

Sometimes they dont test for cysts if your a virgin because the t/v ultrasound isnt very pleasant and is even worse if your a virgin ( i know cause i was one and hadnt even used tampons, zillions of docs have told me since that they should NEVER have done the u/s under these circumstances) You def need a new doc and congrats on taking the steps to get one, this one your seeing obvioulsy doesnt know his arse from his face

Sorry! I just get so mad a doctors who dont know what theyre doing or blow people off and it was very unprofessional for him to pass a script on to the nurse to give to your mum when it was your bros appt!
AGH

Matdredalia · 11-17-2004, 09:21 PM

Hi guys,

I figured I'd update you all on what happened...I went in and talked to him, and instead of listening to me, he totally blew me off.

When I said I was more deppressed and was more tired, he blew me off and wouldn't even prescribe St. Johns Wart. But yet, he doubled the medication I'm on for diarrhea problems I've been having for two years, even though it's main side effect is deppression.

And then the son of a frog took me off of the Metformin because it can cause diarrhea. Guess what morong? I had the problem BEFORE I was on the Metformin, it hasn't made it any worse.

I even told him I was more worried about my PCOS than the Diarrhea problem, but he totally blew me off on everything I said.

It's like "WTF?" So I am now on NOTHING except birth control for PCOS >.< I'm ready to beat him. (I even asked if he wanted to put me on Aldactone again, since I'd only been on it for one month before, and he didn't really bother following up on that. I even flat out told him I DON'T care about the diarrhea near as much as I care about the PCOS. But, God forbid he listen to me).

But yeah...he doubled my dosage of a medicine that has about 20 labels on it saying "Will cause drowsiness, can cause anxiety, deppression, etc" And with the mass ammount of history I have with deppression/suicidal/masochistic tendencies, yeaaaah, I really, really, really need MORE anxiety. (I've felt worse in the past few weeks since he put me on it than I have in months).

BUT, he said when I go in on the 22nd or 23rd to check out my thyroid stuff he'll refer me to a Nutritionist and Endo. (He sees my mom, my brother, and I at the same time, so I guess he didn't want to deal with it right then, I don't know).

Soo...yeah. Then, I talked to him about testing for cysts, and he told me that they would have to cut me open to look for them because ovarian cysts are too small to detect any other way. Is that true? I was under the impression they did an ultrasound and they didn't cut you open unless it was absolutely necessarry. Am I wrong? (He just said there was no reason to have them cut me open because it wasn't worth testing for the cysts. I know it wasn't because he thinks I'm a virgin, my boyfriend was standing right next to me when he told me all this. Not to mention, he's been dealing with the Gynocologist aspect of my health as well for about 2 years now. When he put me on Birth Control for the PCOS, he had to start dealing with that part of things.)

But, bit of good news: There's an Endo not too far from us now who just moved here a month ago! Yaye, I don't have to drive four hours away to see an Endo! *dance* The best part about this is, I'm hoping, the Endo will take over medicating me. At least on the PCOS side, because my Doctor doesn't listen to jack squat I say. *Sigh*

Anyways, thank you all for all your help. And Glowing, you're right: he doesn't know his arse from his face. *SIGH*

I don't want to get a new Doctor because he's been my Doctor since I was 11, and he use to be such a wonderful Doctor. Once they moved his practice up to the main office and he got more clients, it's like he's just lost focus on everything. And he's my mom, brother, grama's, and quite a few other members of my family's doctor. But....I'm really thinking it would be best to get a new doctor before I end up in worse shape because he won't listen. *sigh*

glowingpurpleaura · 11-17-2004, 09:59 PM

Okay your doctor is making me so very ANGRY!!
What a dick!! have to cut you open to see the cyts!!! what a load of crock!!!

*growls* the can see them though a tv ultrasound!!! No one should go cutting you open unless aboslutley nesscary!!! agh!! I know you dont wanan change docs but i think its about time you got one with a brain

Matdredalia · 11-17-2004, 11:13 PM

I honestly think your'e right, hon. My mom suggested we wait until I go to the Endo and then see if he/she takes over and see where it goes from there. If the Endo is competant enough to handle it, she thinks it should be alright. *sigh* I hope so. I'm going to talk to my Doc about referring me to a psychologist while I'm at it.

While I know that alot of this is being caused by the meds, it doesn't help me cope any better, lol. And since I've had emotional problems because of other factors in my life, I figure it's best to go back to the psychologist again. So yeah...I figure if my Doctors too incompetant to handle it, fine, he can just make referrals to people who CAN handle it.

*mutters*

I didn't *think* you had to be cut open to check for Cysts. *mutters* Fricking moron.

glowingpurpleaura · 11-18-2004, 12:10 AM

Good luck with it all (with the endo) - let us know how you go

Invisible_Girl · 11-18-2004, 09:36 PM

Unfortunately, some doctors are totally against diagnosing someone with PCOS, and even treating it. as happened to me, my doc didn't care, or worry about anything until I was finally talking about having kids, and suddenly I was shipped off to an infertility specialist aka Reproductive Endo. Once I was at the RE, he told me that he could not believe no one had said anything earlier (since I had not had more than one or two periods a year since I turned 12!!!!)
anyway, the RE totally understood my issues, listened to me throughly, put me on met, gave me the meds to keep starting my period each month, took so much lab work that I started calling him my Vampire doc. *hehe* then one day I go in and tell him I am stressed, tired, unhappy, in a nutshell depressed. He then started me on Prozac. I recently got back off the prozac due to increased weight gain, and I've been trying to live a cleaner healthier life (hehe not always but... most of the time) I still have moodiness and bouts of depression, but the weight gain I got with Prozac was only adding to the depression.

So all that said... always push for what you need, and if one doc is of the old school who think that pcos is not a 'real' diagnosis, change docs, or go to the RE.
SOMEONE WILL HELP YOU OUT!!

Good luck, I know sometimes the road is tough, but everything usually works out if you keep your head up and fight for what you need, and what you know is right.

Matdredalia · 11-18-2004, 10:00 PM

*Nods* I'm going to see him on Monday or Tuesday, I forget which day my mom made the appointment for, but I'm going to tell him straight up that I want referred to the Endo and the Nutritionist, and if he refuses to help with the deppression, I'm telling him to refer me to the psychologist again. I won't keep doing this to myself.

It's like he doesn't consider PCOS serious, and quite frankly, I'm tired of it.

Thank you guys so much for all of your encouragement and support, it means so much.

*HUGS*

prunepie · 11-18-2004, 10:47 PM

PLEASE DO NOT WASTE YOUR TIME WITH THIS MORON!!!!!!!!!!!111

i bet a hundred bucks that your thryoid isnt even optimized!!!

for THE best thryoid info please go to www.thyroid.about.com

you need all antibodies for your thryoid tested and tsh and free t3 and free t4. not total t3 or t4 but the frees since they show whats really in teh blood stream.

also an optimal tsh is around 1-2.

okay so thats that.
as far as pcos.... ths doc is an idiot. 250 mgs of met??? usually 1500 is the average dose to see any affects.
cutting you open??? holy crap... whatever

please go to an endo or even just a regular gp who KNOWS how to treat pcos and KNOWS the latest suggestions for thryoid optimization..

good luck and keep pushing!!!

xoxo
jenn

ps..i dont know what other issues are going on.... i for one do have panic which i have to take meds for.... but wtih everything you have told me.... i also would highly doubt that you only need anti depressants. i had docs tell me i needed prozac " since nothing else was wrong with me"----

but gee did you guys do the right blood tests before telling me it was all in my head???

gahhhh!!! point is...believe in yourself!!

when hormones are off..everything is off.. good luck xo jenn

sorry your doc really pissed me off lol

psps.

you may want to consider stopping the bcps when you actually get an appointment wtih a knowledgeable doc ..bc it can skew the blood work. just food for thought xo

Matdredalia · 11-24-2004, 07:32 AM

Well....

Went to the Doc yesterday, and picked up the medical records I'd requested. After reading them, I'm totally pissed off. He has his facts screwed up to high heaven all throughout this, and just grr. The man is a fricking asshole.

I talked to him some more. He's still gungho on the Diarrhea. Said he wouldn't put me back on Metformin.

*sigh* He referred me to the Endocrionlogist, but unfortunately the Endo isn't certified for medicaid yet, so getting there is going to be awhile.

He drew blood to check out my thyroid. That was about it.

*sigh* The man has my information about my periods completely screwed up in these records (he stated I was regular at 13, and semi regular at 14. Total B.S., I had 2 periods at 13, 1 at 14, and the next one I had after that was induced by BCP's when I was 15, I haven't had one with out BCP's since!), and he's just....*sigh* I don't know what to do. My cousin keeps trying to get me to sue him for negligence. *Sigh*

Which I could probably do because, while it wouldn't be the subject of the case, when I was 13 and having gall bladder attacks, my mom told him for almost a year that she thought that's what was happen to me, and time after time, he blew her off stating that I was too young. Guess what? My gall bladder was roughly 75% full of gull stones. So, that would be brought up as proof of it.

And then of course, there's the fact that not only are his facts incorrect, but he does not listen to me or my mom. *sigh* Not that I really want to sue him though, it's just sad that I probably could. I mean, for the love of God, the man forgot he diagnosed me with PCOS.

What really kills me though....is when I read his little log of September 12th, 2003 (the date when my mom, grama, and I went in to see him about my PCOS and he forgot he had diagnosed me a year earlier), he noted in his files that he didn't find me to be all that symtomatic of PCOS!!

At this point I had obesity, extreme acne, extreme facial hair, my testosterone levels were sky high, my period had come a total of THREE times in THREE years without having to be induced with Birth Control Pills, I'd been suffering from severe depression for about three years, my hair was falling out left and right (I'm lucky I have a lot of thick hair or it'd be really noticible), and I had dark patches under my arms, at my neck, and well, in between my "jelly rolls". Not to mention, I got the shakes really bad, or would get dizzy if I didn't have sugar of some kind in my system. (My doctor never asked me about this, and at the time, I didn't realize it was a symptom of PCOS). Not to mention, I'd had my gall bladder out at 13 years old. (I've noticed a lot of women with PCOS have to have their Gall-bladders removed).

How in the HELL was I *NOT* Symptomatic of PCOS?? I'm sorry, but that seems like quite a few of the symptoms to me. *Sigh*

I don't know what to do. This man's been my Doctor for 6, going on 7 years. I don't even know if Medicaid will allow me to change Doctors. GOD! GRRR. *SIGH* I'm ready to burst into tears. Hell, I did when we left his office yesterday.

I'm losing a grip and I just don't know what to do. I keep saying I'll get a new Doctor, but damnit, I guess I just keep hoping he'll come around. I mean, he use to be such a good Doctor, I guess I keep hoping that will come through again. I know it's going to sound pathetic, but I really like him as a person, and I guess I'm kind of scared of hurting his feelings. But damnit, this is my health. *SIGH* I don't know what to do. I need to stop caring so much about HIS feelings and worry about my health. *sigh*

Sorry, I guess I just needed to vent a bit. *sigh* I'm going to have my mom pick me up some St. Johns Wart to try and deal with the depression stuff, hopefully it will help. *sigh*

*hugs* Thanks for listening to me rant guys. I'm sure I don't sound all that sane.

OH! And I checked out my tests results on my thyroid: he tested my TSH, which for those of you who don't know should be between 0.70 and 6.40. Mine was at 12.58!!!! O.O >.< *Sigh*

prunepie · 11-25-2004, 06:55 PM

he could be good for some things..but not others..

please do not waste your time..you have hypothyroidism and most likely pcos. or it could all be from your thyroid. the new range suggests a tsh above a 3 warrants treatment or at least close monitering..

www.thyroid.about.com please go there and i hoep you find a new doc xo jenn