Questions to ask the reproductive endocrinologist about managing PCOS (not ttc)

stacicali

Hi ladies,
I am seeing a reproductive endo for the first time today though I've had PCOS for years. I am not trying to conceive but wanting to be as healthy as possible since there is a family history of lean diabetes. I also have recently had trouble with my hair (not sure if it was too much armour thyroid meds or pcos.) Have you ladies had good luck with repro endos? I've been very disappointed in a lot of drs (including endos) in the past and really have my hopes up. It's disturbing when you've read more studies about PCOS than your doc.

Dragonwolf

I've had better luck with my endo than any other doctor, though by the time I sought out an endo, I was done playing around and fought to get in to see one of the leading ones in women's health in the country (the perks of living in a city with a top-ranked university medical system).

Some quick thoughts in no particular order:

1. Make sure tests include fasting insulin and Vitamin D. Bonus points for C-Peptide. (Glucose and A1C alone aren't really enough to determine insulin resistance.)
2. If thyroid is tested, make sure T3, T4, and rT3 are included, not just TSH.
3. Estrogen, progesterone, and testosterone should be tested to get baseline numbers.
4. Probably a good idea to have cortisol tested, too, as there are many symptoms of high cortisol that intersect with PCOS.
5. The doctor should be willing to talk with you and listen to your concerns and thoughts. They should also be willing to learn more, especially if you bring studies with you.

KnitOrMiss

Could not agree more with what @Dragonwolf listed above. I would add:

1. On the thyroid, since you're already on meds, you've obviously been diagnosed with something - make sure your endo runs the Antibodies tests for auto-immune hypothyroidism and for Hashimoto's. There is a third one that's super rare and only indicated to be needed if you pop positive for some other things.
2. If you've ever seemed to have any difficulties with nutrient absorption, I would bring up the subject of low stomach acid and digestive enzymes possibilities. Research I've run into lately seems to show some sort of links between low stomach acid/nutrient absorption issues/thyroid dysfunction/insulin resistance/etc. I'd also ask for probiotics that help with gut health as it relates to thyroid. (low stomach acid makes it really hard to convert T4 to T3, too)...
3. Specifically, I'd request magnesium be tested, iodine, and selenium, as they're thyroid support functions.
4. Iron - total, binding capacity, saturation, ferritin.
5. If you maintain any type of cravings, I'd be prepared to discuss amino acid support in addition to medication options.
6. Trigs specifically - because high trigs while treated for thyroid can indicate that you're "undertreated."
7. I would discuss his/her opinions on what a good TSH is for your age and health status. I'd ask for his/her overall opinion on "good" insulin levels, too - because IMO - lab ranges allow too much in a range. A 20 year old woman and a 40 year old woman are unlikely to be healthiest at the same levels of most labs, unless it's something like insulin - and the risk levels with insulin are very subjective and not agreed with in the industry atm...and I'd specifically want to know if s/he's willing to give you a detailed run down of your lab results each time you visit with him/her...
8. B12 levels - B vitamins specifically, and C, are synergistic with natural mood processes - and if you have PCOS, B12 absorption can be a major issue, even without being on Metformin.

All that being said, my current endo (my third) is easily my best/favorite doctor ever. He's very much willing to treat symptoms when indicated, as PCOS does it's best to "hide" and camouflage other symptoms, conditions, and issues that might otherwise be easy to spot... I consider that absolutely critical now, after having experienced it. Most medications to try don't have HUGE risks/side effects, so trying something that you have symptoms of but doesn't show up on a blood test can be life changing! I wish you the absolute best of luck!!!!

stacicali

Thanks, ladies. Unfortunately, the appointment was a disaster. At least he was a sweet old man and seemed to feel genuinely bad that he didn't have the answers I was seeking. You know it's a bad investment of $80 ($40 copayment plus $40 babysitting) when the dr is asking you what inositol is and why don't you just go on birth control pills and why are you worried about your hair falling out because at least you're normal weight. So frustrating. The search continues.

KnitOrMiss

Wow, just wow. I hope you can leave a review to prevent others from being out more... Definitely time to do a phone interview before any future appointments. Most doctors will do a 5 minute interview, at least.