Tests/follow-up to request...

sarah2747 · 08-20-2008, 04:09 PM

Hey everyone. I haven't posted much but I've read a fair bit of the boards!

I've recently been diagnosed with PCOS (though I've been suspecting it for a few months). It was diagnosed by an obgyn. He didn't really have much to offer in terms of "treatment": I am probably on the low end of the healthy weight range and I cannot take bcp b/c of migraines with aura. He said there was nothing to do except prescribe clomid when I'll be ttc.

Well, with my new *official* diagnosis, I have read with greater attention and interest pcos literature. Well, of course, I read about all the links to cardiovascular diseases and such and became concerned that I had not been tested for a great number of things...

I called the obgyn to schedule an appointment to request further tests (I don't have a gp). I've come up with the following list of things that have not been tested:

-testosterone
-17-ketosteroids (saw in article)
-estrogens
-shbg
-lipids (i.e. HDL, LDL, triglycerides)
-insulin
-glucos tolerance test

My hormones (LH/FSH, progesterone, and prolactin) were tested May 29th so maybe it would be a good idea to check them again? Also, my u/s was May 1st - should another be done? I haven't had a period since Feb/Mar (CD 177) so I figure there's probably more follicles/cysts that would show up.

Also - should I get a referral to an endo?

Wow - sorry this is so long! I'm sure with all the experience on this board many of you can offer some insight as to what I should ask the dr. to look into.

thanks a bunch

sarah2747 · 08-23-2008, 01:33 PM

no one?

Tummy · 08-23-2008, 05:53 PM

Hi, Sarah. There are different opinions on how to 'treat' PCOS when not TTC. A lot of docs don't treat it at all, b/c there's not really anything you can do except take Metformin. Most docs agree that if you are not insulin resistant there is no need to be on Metformin. Everyone with PCOS should theoretically limit their bad carbs. The other thing is that you said you haven't had a period since Feb/March. You really do need to shed your lining at least every 3 months, and if you can't take BCPs, you need to induce a period with progesterone (Provera or Prometrium). Ask your ob/gyn about this. Otherwise your lining could potentially become too thick and abnormal.

Yes, we are supposedly at risk of cardiovascular problems and diabetes in the future, but the only thing we can do right now is keep our weight in check (which seems pretty easy for us thin cysters), eat a healthy diet (as everyone should!), and treat any issues that come up (i.e. insulin resistance, high cholesterol, infertility, etc).

All of the blood work you mentioned are interesting to have as a baseline, but there's nothing that it really tells you at this point, esp if you're not TTC, except for the insulin/glucose tolerance. Same with the u/s. There's really no need to repeat these frequently. If you had stuff done in May, you aren't likely to have much change over just a few months. I was diagnosed in 2002/2003, and did nothing except watch my cholesterol and make sure I had enough periods until I was ready to TTC. And when I'm done TTC I won't do anything except make sure my glucose remains normal, etc.

An endocrinologist might have more insight into treatment if that is what you want, or could at least track your various hormone levels.

relka · 08-23-2008, 07:17 PM

hi sarah- i managed my pcos when i wasn't TTC through an endocrinologist. there isn't much treatment available, but there are things that should be monitored and lifestyle changes that can be made to help minimize symptoms. actually, most of the treatment for pcos revolves around treating symptoms:
regulate periods: BCP's or provera to induce a period
IR: metformin or other diabetic drug
hirituism: spirolactone or other testosterone blocker (cannot be used while TTC)
When i wasn't TTC i was on BCP's and that really helped with my symptoms. I think when i am done with TTC I will probably use natural progesterone and supplements like omega fish oils and cinnamon pills. so yes, i would see an endo just to make sure that your testing is thorough. find an endo that knows about pcos.

sarah2747 · 08-24-2008, 03:22 PM

Thanks for your replies! It is good to get your perspective. It's sometimes tough to find info on this board for thin cysters who are NOT currently TTC.

tory · 08-30-2008, 07:23 AM

Hello,

I was diagnosed with PCOS eight years ago, long before we ever thought about having kids! I was put on Dianette to manage my acne, and started on Metformin, despite the fact being on the pill meant I couldn't tell whether it was working or not! I was put on 1500mg a day and immediately started to lose weight, which was great.

Apart from one gynae (a junior doctor) trying to take me off Met, I've been on it constantly since, and feel good on it. I've just come off Dianette and now I'm waiting to see if I get any sign of AF!

tiana_karissa · 09-08-2008, 01:50 PM

Quote:

Originally Posted by sarah2747

Hey everyone. I haven't posted much but I've read a fair bit of the boards!

I've recently been diagnosed with PCOS (though I've been suspecting it for a few months). It was diagnosed by an obgyn. He didn't really have much to offer in terms of "treatment": I am probably on the low end of the healthy weight range and I cannot take bcp b/c of migraines with aura. He said there was nothing to do except prescribe clomid when I'll be ttc.

Well, with my new *official* diagnosis, I have read with greater attention and interest pcos literature. Well, of course, I read about all the links to cardiovascular diseases and such and became concerned that I had not been tested for a great number of things...

I called the obgyn to schedule an appointment to request further tests (I don't have a gp). I've come up with the following list of things that have not been tested:

-testosterone
-17-ketosteroids (saw in article)
-estrogens
-shbg
-lipids (i.e. HDL, LDL, triglycerides)
-insulin
-glucos tolerance test

My hormones (LH/FSH, progesterone, and prolactin) were tested May 29th so maybe it would be a good idea to check them again? Also, my u/s was May 1st - should another be done? I haven't had a period since Feb/Mar (CD 177) so I figure there's probably more follicles/cysts that would show up.

Also - should I get a referral to an endo?

Wow - sorry this is so long! I'm sure with all the experience on this board many of you can offer some insight as to what I should ask the dr. to look into.

thanks a bunch

Hi Sarah - It is always good to have a baseline especially, as we have discussed, when your interested in the possibility of using herbs and other natural product to control your symptoms. It is frustrating that the normal response of the medical community is to use BCP. I responded really badly as well to them - migraines with aura, severe nausea, lactation(false preg), etc. Also I believe the endo thing is quite a bit more common in the US. All of the dr's I've seen seem surprised when I suggest seeing an endo. They seem to suggest that they would send me there if I was dx with diabetes, pituitary problem, thyroid disorder, etc. None of them seemed to think a PCOS dx needs to be referred to an endo. My gyn even has a endo in the office which he sends certain patients to as needed so there is no difficulty to actually see the endo. I'd be interested in what your gyn has to say on the matter. Do you see one on the QC side or ON?

Rainbow Brite · 09-08-2008, 03:36 PM

Be sure to get your thyroid levels checked too (TSH/T3/T4/Thyroid Peroxidase). Thyroid disease is common in women with PCOS

sarah2747 · 09-13-2008, 07:22 PM

My gyno is on the ON side. He didn't think it was necessary to test my T3 and T4 as my TSH was within normal levels. I did ask for have a lipid panel test done - and he agreed to that. I have yet to go for the bloodwork though - I've been on travel for a week.

Rainbow Brite · 09-15-2008, 05:32 PM

Quote:

Originally Posted by sarah2747

My gyno is on the ON side. He didn't think it was necessary to test my T3 and T4 as my TSH was within normal levels.

Depends on his definition of "normal"

http://www.thyroidtoday.com/TTLibrar...Newsletter.pdf

If it's 3 or above - that's not normal, even though it does fall within the antiquated 0.350-5.500 range.

sarah2747 · 09-15-2008, 10:19 PM

I believe my TSH was either 0.8 or 1. something... thereabouts

sarah2747 · 09-15-2008, 10:19 PM

on the positive side - AF showed up today. After a 200 day cycle. No need for provera atm.

tiana_karissa · 09-16-2008, 12:28 PM

That is great news Sarah. Have you started on the cinnamon yet or did it start completely on it's own?