Don't "Look" Like I have PCOS???

missamiann · 07-28-2004, 11:12 PM

Fellow Thin Cysters:

Dh and I have been ttc for 9 months since my PCOS dx. I have been taking 1500mg Metformin since 11/03, which has resulted in regular ovulation since. My original PCOS dx was based on Day 21 testing (not Day 3) along with ultrasound showing the classic pearl necklace around my ovaries. Because of insurance issues, dh and I recently switched insurance to get 50% infertility coverage, and now I have a new doctor. Now comes my question:

Has anyone ever been told by a doc that they don't "look" like they have PCOS??? Our new dr at the "fertility center" completely discounts the effectiveness of my Metformin treatment on the simple assumption that I am thin and do not "look" like I have PCOS. I am going to have to fight to keep my prescription. Just wondering if anyone else has been through this, and if so, how did you counter it?? Dh said I was very defensive to the dr and should hear her out, but I feel like she's completely wrong! If I didn't have PCOS why would the Metformin be working?????

Candace · 07-29-2004, 11:49 AM

When I was having severe symptoms of IR my gp insisted that I don't look like I am the typical candidate for PCOS. I decided to find a local endocrinoligist that would treat me and I have been seeing him for almost 4 years. He let me dose myself with as much (or now as little) meds as what I need. I have decreased my dose considerably (from 2000 to 1000 mgs) in 2 years years time. As I have lost about 40 lbs (I was at 147 when I was really sick and gaining fast!) but still not the typical size for PCOS. I am now 111 and my endo is singing praises....I think he thinks he performed the miracle! It has been very hard work with exercise and diet changes but I am feeling like a new person. I pray he never suggests taking me off meds..I cannot believe the difference in the way I feel hormonally. It is absolutely night and day. Pursue your treatment however you feel necessary. You know your body best!

Blessings!

Candace

Daisy24 · 07-29-2004, 02:33 PM

If possible, find another doctor. It will make the situation more frustrating and difficult if you have to argue with your doctor every time you go in to see him. As the last person said, we know our bodies best, and if the doctor isn't going to take that into consideration, he's not going to be very helpful.

Best of luck with all of this.

nikkisix · 07-29-2004, 07:02 PM

I wasn't dx until I was 21... I can remember going to my DR and telling her all my symptoms, and that my mother had PCOS. None of that mattered, because I didn't "look" like the typical pcos woman. Talk about frustrating. I eventually moved and went to an amazing fertility DR who dx me.
Unfortunatly, I had to move again, and the search was back on for a DR. One memorable visit to a DR was last March, when I went in to see what could be done with my "raging hormones" (I thought I was going crazy, I was crying or angry all the time) and I said I thought my PCOS was to blame, and she looked at me and told me she "didn't believe I had PCOS, and that whoever Dx me did me no service at all" !! This from someone who has no idea of my medical history!! So, unless you are "classic" PCOS, you can't have it at all?? anyway...
I have a wonderful DR now, and I agree with you Candace, I feel like a totally different person on met,and I would fight it if someone tried to tell me that I couldn't have it... Missamiann, I know why you are defensive, and I would be too. This site has tons of information and research articles dealing with met and pcos, print them off, and tell your DR that you want a second opinion to her theory that you aren't PCOS, just because you don't "look like it".
Ok sorry for the rant, but this really hits home... Good Luck and keep us posted

Nicole

Riverside · 07-30-2004, 11:57 AM

Yes, it is why we are so often misdiagnosed. I took the same path as Candance. I see a regular endo Dr. who perscribes my Met. and I will continue to see her forever.

I also see a RE but only while TTC. He doesn't care one way or the other about the Met. (I think he thinks it will not help me TTC) and I am currently on Clomid & IUI with him.

I love my Met and I did not need a trigger shot this past time which I attribute to the met. It can't hurt your situation so I would ask to stay on it. A recent study of 3 groups, Met only, Clomid only, or Met. & Clomid, showed that the Met. & Clomid group had the highest success pregnancy rate.

Candance - did you lose weight after you lowered your dose or before at 2000mg? How did you determine to lower your dose? I am currently at 1500mg but thinking about moving up to 2000mg in hopes of getting a stronger O. Any suggestions?

Candace · 07-30-2004, 12:37 PM

because of low blood sugar issues especially at night when I don't eat! I stayed at 2000 mgs for more than two years and gradually have lowered the dose. Actually, the weight really came off this past year when I have been drinking Atkins shakes every morning for breakfast. Exercise has played an important role in the weight loss, although I exercised year before last faithfully with no weight loss. My theory is finally getting my hormones under control put me on a more level field for weight loss. I also changed to Metformin ER (the generic version of the XR) and I seemed to drop weight then too. I am down to about 111 which at the drop of a hat I can gain and lose...3-4 lbs...drives me nuts! I really have to watch my carb intake. I do however, allow myself one coke a day which satisfies that horrible sweet tooth. I have noticed since I have left sugar out of my diet, I don't have the horrific cravings for sugar that I used to have. I enjoy the Atkins shakes very much...sort of sweet, does taste a little like vitamins (okay a lot like vitamins) but it is very filling. I don't get hungry...ever. (Is that odd or what?) It has taken almost 4 years to get my hormones under control. It has been a long 4 years but it has really paid off in the weight department along with just feeling great again. My brain reappeared for one. The hardest part for me in being so ill was losing my brain. It was as though I was in another world most of the time. That didn't happen though until I was really ill. (Testosterone was 101, Lh to FSH was 4.1/12.6 so exactly 3:1...and I was gaining weight without eating and running on the treadmill with absolutely no results.) My hormones didn't start raging until I got off the pill after my son was born and refused to start them again and let me tell you I was a mess! For 6 years I refused to take them and suddenly one day, I found this site and found Yasmin. It is the pill of choice for PCOS and I know why. Between that and Metformin all my symptoms are now under control. Didn't mean to write a book...I am just one happy cyster and every cyster should feel good!

Blessings!

Candace

missamiann · 07-30-2004, 07:08 PM

Thanks for all of your posts, girls!

Just wanted to tell you that I went to the doc today, and she saw my polycystic ovaries. Now, she's singing a different tune! I get to keep my Met, and now I'm back on Clomid 50mg in preparation for IUI in mid-August. Thanks so much for all of your help and support! I'm very excited, and feel like things are going my way now!

EmilyE · 07-31-2004, 01:09 AM

Yes, that can be frustrating.... It's like they don't believe us if we are missing one of the symptoms but have all the others!

The nurse practitioner I saw in March also was hesitant to dx me, and repeatedly asked me if I'd always been thin. (I haven't; in fact, I've lost 30 lbs in the past year without a whole lot of effort.) That threw her off, but she ordered the blood tests and ultrasound anyway. And then I got a dx.

Emily

ImJenniferJ · 08-07-2004, 02:56 AM

OMG!!!! I thought it was just me! LOL!
Many u/s techs will loook at my string of pearls--look at my skin & thinness & go "gee, you don't look like you have PCOS".
I'm alomost insulted--annoyed really. Guess what? Lots of us don't have outwardly visible symptoms but that doesn't mean its not part of our life. My irregular afs, unpredictable Os, string of pearls on my ovaries & my messed up LH/FSH ratio don't lie.
I'm not IR, can eat carbs forever & not gain weight etc...
but I sure as heck can't make a baby w/o Clomid!!!
God bless
JJ
p.s. thanks for voicing what I thought was just my experience

missamiann · 08-07-2004, 01:28 PM

Jennifer: You sound just like me! I'm so glad I started this thread so now I don't feel so all alone!

Looking at your stats also gives me hope, as I'm doing my first Clomid/IUI round next week. Do you take any other drugs like Met??? Please give me all of your pg secrets!!

MSUNicole · 08-12-2004, 10:06 PM

I am sooooo glad you brought this up! Recently - I finally talked my doc into testing my Insulin Resistance. He said my levels are fine and that Glucophage will not help. Well - I din't O on Femara and only O'd 2x out of 5 on Chlomid. He wants to try Chlomid one more time since I just had an HSG test that showed no blockage (yeah!!!). I feel like we should try the Metformin anyway since I hear such good things on all of your postings. Should I ditch him and see an ER?????

missamiann · 08-12-2004, 10:39 PM

There's TONS of journal articles on the web that offer research supporting Metformin treatment in women with PCOS that are NOT IR. I'd do a bit of research, print off some articles, and go back to your dr and explain your rationale. If your doc still refuses, then I'd look into going elsewhere. I just CAN'T tell you how much Metformin has changed my cycles! Good luck!

iloverick · 08-31-2004, 02:06 AM

I'm am so relieved to have found this group!!!!!
I spent the weekend horribly depressed, bucause I keep hearing about ALL the symptoms of PCOS. Yet, I have few to no symptoms.
Until I went off bc in 2002 I didn't even realize there was a problem. I knew in high school my periods were painful and miserable, but after I went on bc everything became normal. When I went off bc all the misery returned. I was diagnosed back in 2003 at the age of 24/25ish.
Currently, I'm on Femara (this is also the first and only group that has mentioned Femara). I have enjoyed the benefits of Femara in that I have gotten my period for four months in a row now!!!!!
Wednesday I go to my dr to see what he thinks about everything is working. I hope he is as excited about my four period in a row as I am.
Jessica

tigrrrly · 09-10-2004, 09:21 PM

thank you so much for bringing up this topic! i was diagnosed a few months ago by a male dr, ahem, and he said that i didn't look like the typical pcos woman, therefore he wouldn't put me on meds. rogaine for women was his suggestion. i was so angry, and felt slapped in the face. because i wasn't 200 lbs, i wasn't going to be treated by him. oh, and he told me not to gain weight...thanks. i am 5'8" and at my heaviest weight now at around 135 lbs. when i told my regular dr, she was appalled, so i started bcp's. i just made an appt with a new endo, and hoping to get this under control. i have had symptoms for over a year and a half now, and i am ready to start feeling better. it is still shocking to me, though, that doctors have such terrible bedside manner, and such a rigid concept of what pcos is despite all the information out there.

deb1211 · 09-15-2004, 12:10 AM

I had a similar comment made by my GYN..I have always been thin, 5'3" and usually between 105-110, yet have always had pretty thin hair and periods that were just about non-existant..I had even charted a few cycles to show her my pattern and I told her I thought I had PCOS..she just said, no, I don't think so cuz you don't look like it. Well, after 3 months on Clomid with no "O"..she sent me to an RE.

On my first consult, my RE looked at some older blood tests, although not done on Day 3, and said, i think you have PCOS..my LH:FsH is way out of whack.

I had to do IVF to have my miracle baby, but am now on Met hoping and praying that I can ovulate on my own. I would love another baby and would love to go without IVF.