Should I see an endo?

Neblinosa

Hi. I'm new to the group.
Quick background...I'm 37 5'6 174 lbs. I was told I have PCOS about 15 years ago. When we started trying for kids I knew it would be a challenge and it was. I went on metformin, saw a reproductive endocrinologist and with fertility treatments we now have 2 boys .

Fast forward 6 years...I no longer take metformin. I only took it while trying to get pregnant and always stopped at 12 weeks pregnant. My weigh fluctuates but I can control it with diet and exercise. Losing weight has not been a struggle for me. I over eat, i gain weight. I eat less, i lose weight. Other than having ovaries that are polycistic I have no other of the symptoms.

Now I'm wondering if I should see an endocrinologist just because I know I have PCOS and am insulin resistant. I really have no other concerns. What do you think?

KnitOrMiss

I think that it can never hurt to get a second opinion. Even though your weight is seemingly managed easily by diet, being insulin resistant taxes your pancreas and can set you up for problems down the road. The polycystic thing can lead to extreme pain, and if they rupture - can cause shock problems to your system (my SIL had to be hospitalized after some). I think that despite the fact that your conditions currently are relatively minor, as time goes on, if left untreated, they will snowball on you. There are options to Metformin, and there are literally dozens of supplements that can help. Getting a handle on treating the imbalances you have now while they are reasonable manageable seems like a brilliant idea. Personally, my endocrinologist is now my favorite doctor, as he finally helped begin treatment for issues I didn't even know where underlying issues. I would at least go. Worst thing that can happen is that you are out the cost of one doctor appointment and decide it isn't for you. Good luck.

Neblinosa

Thanks. I'll make an appt.

42carrots

I haven't been very impressed with the quality of health care for PCOS that I've received from my GP or endo, I basically had to do my own research, diagnose myself, request a referral to an Endocrinologist, and even once there it was me who requested a prescription of Spironolactone. He was very much willing to oblige and may have prescribed it anyway, but really I'm not sure he's been much help beyond that. I'm always a little weary of medications and try to exhaust all diet and lifestyle options first, but the research I saw showed that Spiro doesn't seem to have many nasty side effects, so I wanted to give it a try.

Here's how it's helped me so far, letting you know because for some of these I didn't even know that PCOS may be the underlying cause, I thought they were just genetic and things I'd have to live with forever:
-my skin was very oily before, I spent a lot of money on those stupidly expensive oil absorbing sheets - skin is no longer oily and if anything a little on the dry side (which is welcome after so many years of oiliness, also the dryness is probably more due to the extremely cold weather where I live right now)
-skin appears in better condition, hardly any break outs anymore (acne hasn't been as big an issue in recent years, I'm 32, but it was quite bad when I was younger and still persistent at times as an adult) Actually, it was a bad breakout on my neck that led me to suspect I have PCOS, I had never really come across that diagnosis before, and when I read the various symptoms it was basically a checklist for all the problems I've had over the years.
-appetite was almost non-existent for the first couple weeks on it, then it seemed to level out to a healthy point. Prior to that I'm sure that my appetite was bigger and more difficult to satiate, thus making it difficult to lose the 15-20lbs I've wanted to get rid of for years, without success. Though I think it's the Spiro that is primarily responsible for regulating my appetite, my change in diet since starting on MFP back in November may also deserve some of the credit. I started the Spiro just about a month before starting on here, and I think both have been pretty beneficial for me so far.

KnitOrMiss

@42carrots I'm truly sorry that you did not get assigned a better doctor. My endocrinologist has been very involved and proactive in my treatment, so in my opinion, it is just a matter of searching to find the RIGHT endocrinologist. And my endo is a MAN. He doesn't have PCOS, but he is very understanding to the symptoms, he listens, and even if bloodwork does not support a full diagnosis, if the symptoms still persist, he knows that PCOS can "hide" a lot of things, so he will treat the symptoms through a combination of natural methods, and only add medications if necessary.

I'm sincerely glad that Spiro works for you, but it did absolutely nothing for me, except cause me borderline major dehydration. Everyone is different, and everyone's symptoms and issues are different, so it is all a sort of trial and error. I firmly recommend trying another doctor (many will allow a 5-15 minute "interview" on the phone to determine a good fit). If you have insurance, your insurance company should be able to research and find endos with experience in PCOS. If you don't, there are PCOS resources that can locate doctors in the larger cities near most people.

I'm thrilled you are finding such relief, and good luck as you continue. And above all, I couldn't agree more - it is absolutely critical that we research, question, and communicate with our medical teams about everything. We need to understand our conditions and any treatment options, because we are the ones who have to live with it all...

42carrots

@KnitOrMiss‌ That's excellent advice, it's encouraging to hear that there are more effective and involved endocrinologists out there! When I started seeing mine I did have insurance, however I'm back in school and no longer working full time so sadly I don't currently have any coverage. I'd love to see a Naturopath as well and that'll probably be one of the first things I'll do when I have coverage again, though no idea when that will be. What kinds of natural methods has your endo tried? I forgot to mention that my most substantial concern and the reason why I ended up at the endo/wanted to try Spiro in the first place is hair loss, and it's hard to tell if the Spiro has really helped with that at all. He basically told me that if the Spiro doesn't work he "can't do anymore for me" and will refer me to a dermatologist (which I already tried a couple years ago and was basically just told "try using rogaine, bye")

Thanks again for the info, it's really nice to be able to talk to other people who understand all of this!

KnitOrMiss

@42carrots Inositol is a big one I've heard, and I take it, though differently than most of the others in this group. Vitex (one I do NOT personally take, but many others here do) balances out the hormones (either direction) and helps with hair loss. Following a LCHF (low carb high fat) way of eating helps tremendously too. There is a lot of information in the last 2-3 months worth of posts. If you've the time, I strongly recommend reading back some. It will answer more questions, and you'll have many more.

Let us know once you've done some reading, and many of us here can offer additional suggestions. @Dragonwolf and @Alliwan are two I know off the top of my head who are very knowledgeable in the various supplements and what they can help with!

42carrots

I'll look into those, thank you!!

Journeywithyou

My primaries doc office just called and I have been scheduled in with a specialist in a few weeks.

KnitOrMiss

Yay!! Specialists are awesome. And remember, if it isn't a good fit, you can find another one. Best of luck.

Journeywithyou

Met with the specialist yesterday for the first time. She agrees with the PCOS DX and we discussed several treatment paths for all symptoms I display. I have to get blood work drawn before we put a plan in place so we have the full picture. I return in a few weeks.

KnitOrMiss

Journeywithyou wrote: »

Met with the specialist yesterday for the first time. She agrees with the PCOS DX and we discussed several treatment paths for all symptoms I display. I have to get blood work drawn before we put a plan in place so we have the full picture. I return in a few weeks.

That is great news, @Journeywithyou‌ How do you feel after your appointment?

Journeywithyou

I am very encouraged. She listened to me and addressed my concerns. Loved that she did not jump straight to writing a script or changing up current medications without looking at up to date blood work. She gave me options and let me be in control of the direction I want to go with my management. I go tomorrow for my blood draw and meet with her again the first week of April to go over results.

KnitOrMiss

Journeywithyou wrote: »

I am very encouraged. She listened to me and addressed my concerns. Loved that she did not jump straight to writing a script or changing up current medications without looking at up to date blood work. She gave me options and let me be in control of the direction I want to go with my management. I go tomorrow for my blood draw and meet with her again the first week of April to go over results.

That is positively fabulous!!! I love hearing about doctors like this! Good luck as you go.