Could I have suddenly developed PCOS???

Monika · #1 (**permalink**) 01-23-2005, 02:36 AM

Ok this will be long but you may need all infos ...

I got a MTHFR diagnosis back Jan 13 and this was my first apptm with doc since then. First of all, my ob didn't really know what MTHFR was. And hello he is not an RE but still a fertility specialist - at least he calls himself that. But he reminded me he wasn't a genetic counsellor. Too bad he hadn't received my email a week ago (mail is down, I was wondering why he never replied to it), he could have looked it up. Ok so I explained it to him, that it causes m/cs, probably heart attacks/clotting too and it is dependent on teh homocystein levels and the folate status (how well you keep folic acid). I MADE him draw blood for those tests. results will not be in for 2 weeks and I am to call then. He also gave me a referral to another thrombophilia spec to see and talk through treatment when my results are in.

Then I showed him my awful chart and late o (cd27). No good high temps either, so he said low P ... glorious as I had taken P supps, probably not enough. I asked for clomid. I had already had 4 rounds and he thinks 6 rounds is the max for all life as C is linked to ovarian cancer if used more often. Well I wasn't happy about that. I asked for a u/s to rule out cysts anyway and guess what I AGAIN had tons of antral follicles, like last cycle on cd28 - which was the reason back then I had thought I was unov. So great now he thinks I have PCOS too. I got another referral to a PCOS spec (diabetologist) ... who will decide on more testing and if I need metformin, too. Well actually I didn't get those referrals but have to come back Monday for them as his computer system was down. Ok so he didn't give me the C ...
I wanted 5mg of folic acid with vitamin B6 and B12 but had to buy it myself. The pharmacyst told me as soon as I have the genetics counsellor's diagnosis in written, my GP can write me rx for that.

He had the following plan made up for me: stop the P to get af asap. In 2 weeks, the results from the bw will be in and I can call and get the lab report for the thrombo spec. Then we need to wait for af again and then he will do a hormone check, he always does this cd10-12, probably cd10. Obviously too late for this cycle ... hmmmmmmmmm ... unless I continue the P for another week. I told him I have 6 week cycles as of now and he said start P cd 15 and af will be there on time - of course uniov then. And of course I'd have to pay for that P myself (luckily I have some left). Ok so in about 6 weeks he will do a hormone testing, probably after o a P test too and decide from there. We can be ttc in that cycle but no fertility meds for me. I didn't leave the office in a very good mood ...

And this is my new plan of action as of today:

Actually, hormone testing has never been done for me and I asked the online REs, they all agree that
1) a u/s is by no way indication of PCOS
2) hormones must be taken on cd3 not cd10 for PCOS testing (which I told my doc)
3) most PCOS patients don't o or o only very difficultly which is not the case for me, normally I o around cd20 with out the C, guess this cycle o was delayed due to stress, as o spotting had started right on time.

What I haven't found out yet if whether you can get PCOS by a m/c, or after 4 rounds of clomid ... not sure. Please tell me if you know. I really don't think I have it. I thought about it for several hours last night and this morning too. I'm so mad for my ob that he won't test my hormones this cycle ...on cd3. I feel he is postponing my getting pg. Testing hormones has nothing to do with waiting for those further MTHFR tests, absolutely no reason why they should interfere or whatever. I will go there tomorrow to get my referral to the GP (GP will write further referrals) and decide from there. If I can talk to him and tell him to test me the cycle about to start (stopped P, last pill Thurs night, af should be here very soon, temp way down), I will call the diabetologist asap and see if they could get me in and tested this cycle. I'm not willing to leave this possibility out ... and I'm not willing to go on a ttc break. Ok I won't get the testing and the C then but I still have P and maybe I get lucky like with dd and ds. Late o is not always bad, my best friend got pg with a cd31 o.

The MTHFR is only a huge problem if the homocystein levels are raised too. I will know that in 2 weeks and hey I will not be pg yet in 2 weeks, so no reason to panic. I know PCOS makes for m/cs too but as I said I'm really not sure if I have suddenly developed that.

Please advise ...

Star622 · #2 (**permalink**) 01-23-2005, 07:52 AM

I have pcos, but I'm no expert by any means. I'm sure others around here can give you a lot more information. I'm sorry you are having such a difficult time with your doctor. I know this isn't the first time! Any chance you can change or is it too difficult with your healthcare system?

I wouldn't think that a m/c could cause pcos or several rounds of clomid. Women can have polycystic ovaries and not have PCOS as far as I know. My endo looks for about 3-4 markers. The fsh and lh ratio should be 1:1 and it if it isn't then it can be an indication of pcos. It doesn't hurt to get it checked out and maybe that doctor will be more helpful in getting other testing done.

Were you tested for anything else in addition to the MTHFR factor? My RE just ordered several additional tests that would be connected to m/c and failed cycles (my case 2 ivf's).

Here are a few that you may like to ask about. I think most are connected to clotting disorders.

Protein C antigen and activity
Protein S
Fibrinogen
Factor V Leiden
Prothrombin gene mutation
Homocysteine (what you had done)
Also, Karyotype (chromosomes)
Lupus anticoagulant
Anti Cardiolipin antibody

I hope you can get some answers from this new doctor. I know how frustrating it is!

Mom2Thaddeus · #3 (**permalink**) 01-23-2005, 02:28 PM

I would have to say that not all doctors go by blood work when diagnosing PCOS, I was originally diagnosed in 1995 with only an u/s. I was then re-diagnosed by the same doctor back in 2002 by him asking questions about my cycles and other symptoms. This was of course all confirmed when I went to an RE and had all the blood work.

Nancy is correct that you can have Polycystic Ovaries (PCO) and not have PCOS. I don't have the normal case of PCO, but I am pretty close to it.

The one thing I did notice in your post is that you have normal cycles, this is very uncommon in women with PCOS since most of us do not ovulate. Now this doesn't automatically mean that you don't have PCOS.

Here is a little quiz you can take http://www.pcosupport.org/support/quiz.php , results will vary as I get between a 6 and an 8.5...which tells me that if I'm concerned see a doctor.

daydreaming · #4 (**permalink**) 01-23-2005, 02:38 PM

I'm not clear on why your OB says no clomid if you have PCOS? I don't know if clomid or repeated miscarriages can *cause* PCOS, but it can show up later in life, like it did for me. I got pregnant with my first two with no problems, but now, I rarely ovulate on my own AND suffer from repeated miscarriages, when I do get pregnant. (this last time I got pregnant with clomid)

I think it can't hurt to have a blood test. I didn't have my test on a certain cycle day, though. Is it that important? I just knew I hadn't ovulated yet on that cycle. I never had an u/s to check the ovaries, and was diagnosed with a blood test.

Monika · #5 (**permalink**) 01-23-2005, 10:49 PM

Thanks so much, ladies.

Nancy, I had changed from the other doc, this doc is my last chance (3rd one now) here in the area. He is supposed to be the best, um.

I had all the tests listed by you and a gazillion more during a whole thrombophilia workup at university clinic.

Monika · #6 (**permalink**) 01-23-2005, 10:53 PM

Shawn Ann, I scored 10.5 without mentioning my uncle who has diabetes juvenalis since he turned 30 ... not sure what type II is, but thta's another 2 points, so I could be 12.5 ... looks like I want to see the diabetologist for sure.

cole_lee · #7 (**permalink**) 01-24-2005, 05:51 PM

I was diagnosed by laporoscopic surgery, I am starting Clomid tomorrow. My DR said that even though I have the signs of ovulation and the normal AF that doesn't mean that I am really ovulating. He said just b/c you have the right consistency of CM etc. doesn't mean the egg is releasing. I just read that PCOS can run in the family. Does anyone on either side of your family have it?

WantAPeanut · #8 (**permalink**) 02-06-2005, 04:41 PM

Hi Monika...
I was just lurking, as I too have PCOS and MTHFR (both kinds like you). Anyways, I wanted to add in addition to your folic acid, B6 and B12 you may want to add baby aspirin to your list. When I got PG I was diagnosed with MTHFR and my OB sent me to a hematologist. The hematologist put me on the things you are on in addition to heparin injections. He said that when I am not PG I'll still take the folic acid, B6 and baby aspirin. Just a thought. Good luck, I hope this diagnosis is what you need to have a healthy and happy PG. Sorry I don't really have any info. on whether or not you can get PCOS all of a sudden but my guess would be most likely as PCOS is a strange thing and manifests itself in all sorts of different ways.

Karen