Went to the doctor...interesting news. Insight?

brandiwiggins91 · December 2015

Hello, all! A little background...about 5 years ago I was diagnosed with PCOS from a blood test. My periods were (and still are) completely absent unless I am taking the birth control pill. Fast forward 5 years, and my husband and I are ready to start trying for a baby! We haven't used protection for the last year or so to no avail. I have not had a natural period in years. I figured that it was time to go to the doctor if we were getting serious about this.

I started with my general doctor just to get initial blood work and a physical done. The doctor did say that weight loss would help me (I could stand to lose about 50 pounds). The doctor also wanted me to watch my carb intake. I'm not going to lie, the last couple of week I have been really struggling with that. I LOVE carbs! It's so hard for me to eat different foods. Especially snacks, it is just so easy to grab chips/popcorn/granolo bars. Any suggestions?

Anyway, my blood work came back and the doctor said that my two hormone levels that they test for (I believe it is LSH and FH?) came back normal. They said that to be considered a PCOS patient, they are usually elevated and at a 2 or higher. Mine were a 1.1 and were not indicative of PCOS. He did, however, say that my testosterone was higher than it should be. He went ahead and prescribed me 500 mg of Metformin for the next month. I've been taking it now for about two weeks (with no side effects). Anyway, he is referring me to a specialist, but he said if I can't get an appointment in the next month or so to come back to see him so that we can check to see if the Metformin is working.

Has anyone had experience with the LSH/FH hormones being normal but just having high testosterone? I feel like when I read about PCOS, it talks about high testosterone being a symptom! Is my doctor confused? Lol.

Also, I noticed the other day that my CM was very stretchy (it was able to stretch several inches). Could I have been ovulating? I have not had a period in years.

Thanks everyone! Baby dust to you all!

oxinfree · December 2015

"I LOVE carbs! It's so hard for me to eat different foods. Especially snacks, it is just so easy to grab chips/popcorn/granolo bars. Any suggestions?"

Who doesn't @brandiwiggins91 ?!?!? haha. We all love carbs. I found out I was celiac (or highly gluten intolerant) a while back now, and the struggle is real... let me say that much. I'd say it takes about a month to get into a grove, but a good 3 months to really hit stride and not struggle so much. In terms of snacking, it can be very very difficult indeed. I find that if I buy and prewash/cut/portion snacks like veggies and fruit, then I can grab a baggie out of the fridge and its just as easy as grabbing a handful of chips. I love dried fruit, and veg (as well as veg chips) but I'm careful to buy ones without added sugar.

Popcorn is my go to though... I lie to myself and say.. but its corn! its a veggie! I don't care, I need to have a treat and that is satisfying but still light (just make sure to not overdo butter/salt I guess).

In terms of actual meals, its really not too hard to avoid wheat... carbs on the other hand would be challenging (as I still eat potatoes and rice etc). But I'm a huge fan of spaghetti squash (as a substitute for pasta) and have even recently gotten into zucchini noodles. Honestly, there are so many options out there but it takes a bit of effort and determination. Keep at it... it does become easier I promise!

Best of luck to you!!!

LizzieJ13 · December 2015

Hi @brandiwiggins91 - Your experience sounds a lot like mine!! I was married last November, and knew it was possible that I had PCOS -- I didn't have totally absent periods, but would get them 3 times, maybe 4 a year, plus I had other symptoms. In April, I officially started the baby-making process with a basic physical, then an OB checkup, and then was referred to a reproductive endocrinologist.

All my initial results came back "normal" too. My RE eventually told me that my testosterone was on the high side, but I think that's it for hormones that are out of whack. It was frustrating at first to hear "everything looks ok" after all these tests - not that I wanted something to be wrong, necessarily, but I wanted something to treat! Even after my first ultrasound (ordered by my PCP), I got the call that my ovaries looked fine. It wasn't until my RE performed an ultrasound that the cysts were identified.

Anyway, my RE put me on Metformin in June. After multiple attempts to work up to the full dose of 2000mg/day, I realized I can only handle 1000mg/day. Otherwise, I feel so tired and out-of-sorts that daily life is a struggle. I had a follow-up visit with my RE in October (coincidentally, on my CD1, which worked out well!) and started 5mg Letrozole CD3-7 and an Ovidrel trigger shot on CD13 as well as the Metformin. I'm now on CD9 of my second cycle with this protocol.

When I get my period before I was being treated, I notice EWCM and breast tenderness, even though it's likely I don't ovulate. I've been told that my body can basically gear up to ovulate, but it never actually happens. So, while your CM could maybe indicate ovulation, it's not definite. But make sure and BD just in case

As for diet, well, I could also stand to lose 50lbs (my goal is 30). I definitely don't have a terrible diet but I also have a hard time cutting out carbs! For low-carb snacks, I like a piece of fruit and string cheese, or baby carrots and hummus. (Unless you're totally cutting out sugar, even in fruit.)

MrsHandler · December 2015

LizzieJ13 I too thought I was ovulating, especially when I was taking OPKs every month and getting positives.. My doctor said that basically you will prepare to ovulate but it never actually happens. I was diagnosed with PCOS AFTER beginning the baby process. Keep you head up!

halips · December 2015

I have been diagnosed with PCOS- this was confirmed not only by bloodwork (high testosterone only) and an ultrasound. With the visual presence of cysts and the high T, it was clear I have PCOS. I would ask for an u/s if you haven't had one! The FSH and LH have always tested normal for me, so it's not the only factor that should be used to determine diagnosis.

As for carb intake, my RE recommended consuming what he called "slow release carbs". These carbs don't cause a sharp increase in blood sugar levels. People with PCSO generally have a difficult time with blood sugar processing, which the metformin helps with. Slow release carb are things like fresh fruits, on starchy veggies, sweet potatoes, nuts and nut butter and quinoa and oatmeal. If you are having a hard time removing carbs (who isn't!) start by substituting with these items and then work from there. Good Luck!

HBamama2B · December 2015

Hi! PCOS here too. To clarify, it's a syndrome (a grouping of symptoms indicative of dysfunction) under a broad Dx. You can absolutely have some hormones return normal and still have pcos. You only need a subset of markers to qualify. It's more a general term for anovulatory function. An important test to determine if metformin will work for you will be a fasting glucose. Your re will do this at your first visit of you haven't had one recently. You will also have an ultrasound to check for cysts.

If you have stretchy cm, get busy! It could be nothing, but with the metformin regimen you just added it could be something.

As for the simple carbs. I'm so sorry. Lose them, all of them asap.for us pcos gals that's the most detrimental thing we can do to our fertility. Even more than the weight loss. Don't worry though, you can have that soft bread back soon! There's a pcos diet book that's really good. Don't be uber strict, but make substantial changes before seeing your re and you'll have better luck in combination with the metformin.

best of luck !!

brandiwiggins91 · December 2015

Thank you all so much for the wonderful replies, everyone! I'm not sure if my body is just gearing up to ovulate and then not, or if it is actually a result of the Met. I would LOVE if it was some type of result!!!! Hubby and I did the baby dance just before my stretchy cm, and last night (but I really had no visible cm, so I'm guessing not too fertile...).

I caved and took a pregnancy test the other day (I know, it is seriously way too early! I wouldn't even be able to tell!) Of course it was negative. It's just so hard because we just always have unprotected sex and don't worry about it. At least I know that I'm not at this point. My new plan is to just start testing once a month until I start getting AF again. That way, I can always be sure if I am or not.

I have been doing low carb foods for the last three days!!! What's saving me is definitely cheese. Not that I'm gorging on it, but since I am allowed cheese, it's helping me to stay away from breads/pastas. I'm excited to see some weight loss and to see if that helps bring my cycles on. Ughhhh....I'm obsessing! Totally had a dream last night that I got my period. I would be so excited to even have that happen! I just want some normalcy with my cycles and fertility!

PCOSat25 · December 2015

Hey there! PCOS here as well! I was not aware that FSH and LH abnormality were an indicator of PCOS. I have never been told I have any abnormality in those areas. I too was initially dx with high testosterone. I was sent to a specialist and they did a diagnostic ultrasound and found that I have pretty Classic PCOS looking ovaries. I believe the only true diagnostic technique is the ultrasound. Hormone checks would just be an indicator causing the doctors to check out the ovaries. My doctor didn't officially dx me with PCOS until I had had the blood screen and two ultrasounds on separate occasions showing the cystic appearing ovaries.

PCOSbaby · December 2015

Hello! I was dx with PCOS after bloodwork and an ultrasound. I too wasn't aware that abnormal FSH and LH levels indicated PCOS. Mine were normal. I did have anovulatory cycles, elevated testosterone {given dexamethasone to decrease my levels} and a polycystic ovary. My left ovary was removed last year due to ovarian torsion {ouch!}.

Like you all, I was educated on the importance of a low carb/high protein diet. Pasta is definitely my weakness so I understand the struggle.

@brandiwiggins91 What other foods do you enjoy?

@HBamama2B I've heard great things about the PCOS diet book. I need to check it out.

@PCOSat25 and @halips Are you taking anything to decrease your testosterone levels?

Edited because I can't type!

LizzieJ13 · December 2015

My cycles did change, for the better, when I lost weight a few years ago. I lost about 25 lbs doing Weight Watchers and I'm going to go back on if this cycle is unsuccessful (1dpo right now). Obviously it's not a low carb diet, but it limited and balanced my diet enough for me to see results.

KLake42 · December 2015

I'm not speaking from personal experience, but my doctor did tell me that LH and FSH could show up normal for someone with PCOS, especially if they're a little older (I don't know your age).

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Went to the doctor...interesting news. Insight?

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