Question for you all!

hlacey · 10-25-2003, 02:21 AM

Hello!

I am a newbie, just diagnosed with pcos yesterday after years of suspecting something was definitely not right (but was it wrong to be happy about having only 4 periods a year?) I have tons of questions right now. I'm 27 and I have always had irregular periods (never been on the pill), but I have no excess hair growth, and I'm fairly thin (5'3" and 115 lbs), eat well and exercise often - always have. I have had some headaches/fatigue which I always thought stress-related. However, in the past few years I have undergone heart tests for arrythemias (I have premature ventricular contractions), breast screening for tenderness, liver function tests (turns out my bilirubin is consistently elevated), and just last month an ultrasound confirmed cysts, bloodwork showed prolactin was elevated. Does any of this make sense to anyone else? I have never been on the pill, and the gynecologist I saw is recommending tri-cyclene to regulate the hormones. I have to admit that I'm a little afraid of starting it, is there any risk with it triggering insulin resistance or making the cysts worse as it prevents ovulation? From what I have read in the past two days, should I get a glucose-tolerance test first and ask about metformin? Maybe see a reproductive endocrinologist? My family doctor doesn't seem to know a lot about this. I'm recently married and hoping to start a family next year, which is why I finally decided to get my irregular cycles looked into. Does anyone else have elevated bilirubin and/or prolactin? Could this actually be caused by impaired liver function (I think the liver plays a role in inactivating hormones like estrogen and testosterone, doesn't it?)
By the way, this website is great - it has really helped to sift through the info here!
Thanks
Heather

cheerbear · 10-25-2003, 02:14 PM

Welcome Heather!

I don't know how many of your questions I can answer as I am new to this myself, but I just wanted to at least reply to you. I was diagnosed just a couple months ago after being on BCP for several years. My GYN said the PCOS probably started in my teenage years and got progressively worse, but was controlled by the BCP. I don't think that BCP make the cysts worse, they many even control them because they regulate your hormones. However, I guess you could say that most people don't consider them a long term solution to the problem.

As for your question about Prolactin. I seem to remember my GYN saying that the Prolactin levels are elevated to make up for the extra testosterone. But, don't quote me on that. And I have no idea how liver functions fit in..sorry!

As for seeing an RE...some people on these boards have said their REs are mostly just concerned with getting them pregnant...other have been lucky enough to find an RE that also cares about their long term health. So... if you are not ready TTC just yet maybe you want to try and see a regular endo? I am seeing a RE since I am TTC so maybe someone else can better answer that question.

Well, I know I didn't answer many of your questions... but I hope you will keep us posted and at least find this a place to share your problems!

Take care,
Heather

Anne1978 · 10-25-2003, 03:15 PM

Hi Heather,

Welcome. I am also a newly diagnosed thin cyster and new to this site. I agree that this site is fabulous and everyone who has written to me has been extremely nice. I took the pill from age 18 until this June (I am 25 now) and never had any symptoms of pcos either. When I stopped the pill, I also stopped getting my period and that is how I got diagnosed with pcos. I think the pill controlled my pcos during those years, but it also kind of covered it up.

I can't really answer your questions about the different hormones. I really pushed to get a glucose tolerance test and just got the results. I haven't seen the doctor yet, but from what I understand from the laboratory I may have reactive hypoglycemia. Anyways, I think it definitely makes sense to get a gtt before starting the pill. Try to get a full gtt if you can and not just a fasting insulin test. My fasting insulin was 3.5 (really good) and my gtt showed some strange things.

In a few weeks I am going to see an endocrinologist (to talk about my long term health) and an RE (to talk about babies, since I was hoping to start trying this spring). If you have a good insurance plan, or if you can, it might be a good idea to consult both kind of doctors to see what suits you best.

Good luck with everything.

Anne

hlacey · 10-25-2003, 05:58 PM

Heather and Anne -

It was so encouraging to hear from you both! I wasn't able to sleep last night, after reading so much about pcos and it was great just to type and ask questions. I'm so happy to have found a place to ask them! Thanks for the advice. I decided that I'm going to wait to start the pill (what's another few months now, after it's been so long?!!) and ask for an endo referral and GTT. I think I need to find out whether insulin resistance is a factor for me. It's also very encouraging to know that there are others out there who have the same symptoms without the "full-blown" characteristics. With everything I read yesterday, I was also somewhat confused because I don't have a lot of the problems commonly described with pcos. Now I sort of understand the whole "umberella" of the syndrome.

Thanks again and good luck with everything,
Heather

Raiderette · 10-26-2003, 05:33 PM

Heather-
I too have elevated Liver enzymes. Just found out last week and
mu GYN does not know why. I am in to see the Dr. in the am for a post coyatal (however its spelled) and we are going to dicuss my options then.

hlacey · 10-26-2003, 10:31 PM

Raiderette-

Good luck tomorrow!
Will you let me know what happens? I'm just newly diagnosed and trying to put all the pieces together - the gyn I saw didn't really say anything about the liver enzymes being related, and I didn't find much on the web about it but somehow I have a suspicion that they may be connected to the whole picture????

Thanks!
H

Raiderette · 10-26-2003, 11:13 PM

I hope so. I am very worried about it. I will let you know what his plan of action is. I assume I will have to go to a specialist.

I am newly diag. myself..finally. and then had this handed to me as well. I was to start Glucopage too (I so wanted tooo) and now i dont think i can till this mystery is solved.

Please let me know if you find out anything. I too have been researching on the web.

I see you are thin..I am not. But hopefully we can both find a anwser that both of us can take from this..

cyster_sista_annie · 10-28-2003, 01:01 AM

I am very surprised that you were diagnosed with PCOS after only and ultra sound, and without a GTT. Usually PCOS is not diagnosed without both these tests being run. Without a GTT there is no way of knowing if you are indeed Insulin resistant. Metformin is a and insulin sensitising drug used as treatment for insulin resistance.. so there is NO WAY you should start taking it without have a GTT.

If you want any information, please let me know..
Annie

Raiderette · 10-28-2003, 01:19 AM

heather-
Went to the Dr. today and he is going to reest me next month when he is testing for the progestrone surge. He didnt seem to worried about the liver levels. (its not his specialty anyways) I think he thinks its because of the pcos .
I will keep you posted.

zelda · 11-11-2003, 08:14 PM

hi there and welcome!
that's a whole lot of questions you've got there, and i thought i'd throw in my 2 cents:

my bg: i was diagnosed several years ago, but only became aware of what having pcos really meant in september of this year. since then, i've been convinced of the fact that pcos can affect almost everything since in plays out in your endocrine system.

now, i don't know much about the liver, but i can tell you that that is where the insulin breaks down sugar in your body and you might want to explore that connection. i'm not saying that pcos is the cause, but there might be something there for you. i'm really happy for you that your doctor seems to be thinking in that direction - he sounds like a keeper.

ugh, cysts! bcps can help control them -they won't make the cysts worse, since your ovulation will be supressed i.e. no new cysts-, but they're not a long-term solution because they have their own negative effects. the tri-cyclene *might* be a good idea until you get things figured out, but you need to find a long-term solution that's right for you. if it works for you, metformin could initially be a part of that. definitely do the gtt and go from there. you might also want to read the thread here about taking met and bcps together...

i'm hoping the best for you,
zel

Raiderette · 11-11-2003, 09:04 PM

There is a wonderful article posted in the Metformin area about the liver and how it is effected....its a sticky now.
check it out.

http://www.soulcysters.net/showthrea...threadid=61776

It was very helpful to me.