Tired of just coping, wanting to actually DO something about it...

Annikki · 08-21-2008, 02:47 AM

Wow. I had a huge post about my story. It made me cry while writing it. And it took so long that I was apparently logged out, and I lost it all. Oh well, here's the "highlights".

Anyhow, hi! I am brand new here, but not new to PCOS.

I was diagnosed when I was about 20, in 1993, when there was little info at all on it. All that I got out of it was the diagnosis and a prescription for birth control pills to deal with the infrequent periods. When I started seeing my current primary care doctor in 2002, I mentioned that I had it and he didn't really make much comment at all.

I'm now 34, and I've finally learned a whole hell of a lot this past year. I'm SICK of the obesity, high cholesterol, skin tags, dark spots, hair on chin, tiredness, etc. Diet and exercise alone just aren't working well for me, and I wanted to try one of the drugs that help deal with the possible root problem of insulin resistance -- I was thinking metformin in particular at the time.

I brought this up to my doctor, and he just didn't seem to get it. My husband, who was in the examining room at the time, got the same vibes from the doctor. But Dr. did say he'd have my blood drawn right there to test for insulin antibodies.

Got the call today that my insulin antibodies are normal! So he won't let me try any of the variety of insulin-related drugs. And yet, I've learned today that a simple blood test is NOT always going to work in diagnosing this problem, and fitting in with about 70-90% of the various symptoms that indicate IR suggests that's the case for me.

I am sick of dealing with this old man who just Doesn't Get It. I'd love to see an endocrinologist who does, but insurance says I need to get a referral from the primary care physician. So now it's time to find a PCP in the metro Detroit area who actually might have a clue about PCOS, or at least be willing to not make me feel like he's blowing me off when I know more about the syndrome than he does. And I haven't the foggiest where to even start on that.

UGH!

BethanyBelle · 08-21-2008, 10:31 PM

I went and saw and endo whom never even suggested PCOS. I wouldn't necessarily try to find an endocrinologist. I would search EVERYWHERE for a new primary doctor who actually cares & listens & tries to help! It has taken me years to find her & I finally have & she has helped much more than the endocrinologist EVER did!!!

I feel your pain, but don't give up!!

TheGigglingFrog · 08-21-2008, 10:54 PM

I have such a similar story! You need to find a new PCP for sure! Does your insurance allow you to go see a OB/GYN without a referral? Maybe you can drop off some research articles about Metformin being used even in non-IR PCOS patients before your next appointment and ask him to review them so you are both on the same page about how to proceed with treatment... I'm imagining him as a burned out man ready for retirement whose ego doesn't have room or motivation to keep up with current information... also, there are so many disorders that Doc's have to keep up on, it's understandable sometimes that they don't have all the info that we do.

You can also contact your insurance and ask them to find a Dr that specializes or is very knowledgable about PCOS... it may take a few days for a response tho. But I would switch Dr's if I was in your shoes! If you have Dr profiles, maybe go with someone who hasn't been practicing all that long, I'm finding that younger Dr have more info because their schools are starting to cover PCOS more.

Sorry I ramble so much!

tazz · 08-22-2008, 01:53 AM

Welcome!

I agree with the pp. I would try to find an ob/gyn. Sometimes they are a little more knowledgable about these things. GOOD LUCK!!!

Crystaldreams · 08-22-2008, 12:42 PM

wow my story is alittle different I seen endricrinologist and several primary doctors not one of them ever suggested I had PCOS they told I had low pituitary function and they said that is why my thyroid was out of whack I kept informing my primary doctor there is something else wrong but they insisted no upon seeing regular doctors and 1 endricrinologist I also saw a ob/gyn and he looked at me said nothing is wrong with you I said ok very frustrating especially when we know our bodies and we get told moreless its in our head. it wasnt til I moved from my home state and I got me a primary doctor he ran test after test found my chloesterol and testerone was way high sent me to an endricrinologists and right off the bat he said you have PCOS between my primary doctor taking the time to run blood test after blood test and referring me to my endricrinologists and then my endricrinologists knowing what was wrong with me both doctors are a miracle to me my endricrinologists put me on metforim 1500 mg im now on 2000 mg I have not been able to lose weight prior to being diagnosed correctly since May 2008 til now I have lost 48 pounds I was diagnosed end of April 2008 started the low carb high fiber diet which I kinda went off and did my own diet which has worked wonders for me plus being on metformin. So to me im not against primary doctors nor endricrinologists as I was at one time I learned just takes finding a doctor who will give their all to help and keep working at it. there is more to my story but it would take days months maybe years to go into it lol. so good luck and I hope you find the right doctor for you dont give up as I once did I'm glad I decided to try again once I moved outta state which was the best thing I ever did

suferininSC · 08-27-2008, 05:50 PM

I certainly can understand anyone who speak in this. I was diagnosed almost 12 years ago. The only good thing that has come out of this is that God blessed me with 2 little girls 10 and 3. They were not easily conceived, but there here. Not only do I have PCOS, but an uncontrolled thyroid. I am scheduled to see a Reproductive Endocrinologist that is 3 hrs away from me, but my husband and I are willing to take that drive. I am going through major depression right now mainly because of my weight. I am determined to beat it. Don't count everything out, something will work.

mimi2crazy4u · 09-09-2008, 08:26 PM

I've been screaming for help from all doctors. NONE of them were much help. All they wanna do is write you a few prescriptions and come see them again in 3 to 6 months! Waste of money and time. I don't like taking medications especially if they haven't been out very long. I've been taking the holistic approach to this. It's helping too. Just got to figure out a way to naturally get my period back and make this extra hair go away! The only thing that really frustrates me is my insurance will not pay for me to see a holistic doctor and the tests he wants to run on me will cost me a total of $1200!!! To me it's worth it if I could afford it! So I tried to see if my primary doc could order the tests instead and that idiot never heard of a saliva test! So I'm back to square one until I win the lottery!!! Any suggestions!?

TheGigglingFrog · 09-09-2008, 08:59 PM

This can all get very frustrating! At one point I finally realized that I am the only person responsible for my health and that all others are simply there to assist me in the process. You don't need anyone's approval to treat your body the way you see fit, you do need a western Dr who can write Rx if you are going to choose that route. As I see things, we have the following options in treating our PCOS:

1. Do nothing ('eh, not great)
2. Healthy eating and exercise for our body (regardless of having PCOS or not, this is important)
3. Western Medicine (this requires finding a good Dr, and that is most of the battle)
4. Alternative Medicine (this requires being a savvy consumer)
5. Combination of all of the above
6. Taking care of emotional aspects (psychotherapy, books, church, however you nourish your spirit)

Western medicine is limited in its scope of practice. It is great for diagnosing and monitoring through blood work and ultrasounds, etc. They are limited to treating a patient with a Rx, surgery, wait and see/monitoring every few months. Some are better at educating than others, just like in every profession there are winners and losers.

Alternative practitioners have more tools in their belt because the culture of their profession is more open-minded. And just like western Dr, some are better than others. Make sure to find out where your practitioner received their training. Find out what requirements your state has for licensing. In some areas, anyone can hang their shingle saying they practice such-n-such. Before you take anyone's advice, make sure you do your research!!! Just because it is *natural* doesn't mean it is safe, after all arsenic is natural. Personally I think there is a lot to be found in Alternative routes, but you do have to be a smart consumer.

What Rx were you given that hasn't been out very long? My understanding is that Metformin, spironolactone, and many BCP have been around for a long time and are safe.

Whether you take a Rx or alternative supplement or herb, it is going to take time, 3-6 months at minimum, before you see results. I have to constantly remind myself this because I want my immediate solution NOW!

The fact that the alternative practitioner wants test$ that are $$$$$$$$$ is a red flag for me. Has that person asked for the results of the blood work your Dr ran? Are you still seeing the Dr that upset you at the start of this thread or were you able to find someone new?

There are lots of options on the Alternative board that you can start without anyone's approval but your own

Here is how I see things, but please spend time investigating for your own body since I'm not a Dr

Metformin is an insulin sensitizer, cinnamon and chromium are just two of the many alternative supplements/herbs that are know insulin sensitizers

Spironolactone helps with hair growth, saw palmetto works for some people too. Both effect testosterone in your body.

BCP, help to regulate cycle and hormone levels. Diet & exercise can have the same effect.

Hang in there!

mimi2crazy4u · 09-10-2008, 03:02 PM

The doctor I'm seeing has all his license and requirements. I've looked it all up. He's the only Chiropractic Internist Doctor in the state of Louisiana. There are only about 500 doctors total around the world like him. I haven't been back to see him in over a month and half because there isn't any point if I don't have the funds. I do plan on going back once I actually have the funds. He's wanting me to take a premenopausal test (vials you spit in different times of the day for a week) it tests your CH levels i think. From what I gather it's a very detailed test. I'll have to take a urine test, blood work etc. I really do think these tests are worth a try. I've given him all of my past lab results that I have taken in the past. And he asked me if I've ever taken a food allergy test. I told him I asked for one from my endocronologist and the endo just laughed at me. So he wants to test me for food and preservative allergies too. Just a lot of different tests he wants me to take. So I'm wondering if i can get these tests done through a doctor that is covered under my insurance and just get the results sent to him. Ahh you know this stuff stresses me out more than being broke lol Has anyone gone the holistic route and if so what has been done to help you?!!?!?!?!?!?!?!?!?!