Finally! A doctor who would help me! - Page 2

Paola · 04-26-2008, 03:13 PM

Pandora you rock !!
Thanks so much for posting all that info !

I think I have to relax and just trust this doctor because she's the only one I've met who knows what she's talking about, I just have a tendency to get all freaked out because I've done so much reading and researching over the years that it's hard to just stop and listen to someone else.
In the past that only got me in trouble but she does have a proper course of action for me and I just have to have faith and try the things she's prescribed for me.
We'll see what the pharmacist has to say on Monday about a low dose of the anti-androgen and I'll just keep going until, a) I run out steam, or b) things actually go my way for once !

Thanks again Pandora.....you're an awesome cyster !

Pandora1151 · 04-28-2008, 12:36 PM

You're very welcome! I know what you mean about having done so much of your own research. After posting all that information, I was thinking that people with PCOS should just go to medical school and become doctors because we usually know so much about our condition. My last doctor started telling me that I knew more than she did and she would just give me whatever medication or treatment plan I asked about to see if it would work. I started to realize that I was her own personal source of information AND her test subject and I was also paying her for it instead of the other way around. I had to find a doctor who had done more research than me on the subject. I love the fact that 90% of this doctors patients are PCOS patients. It's easier to believe him when he says something will work. It's important to trust your doctor. Unfortunately, we all have had bad experiences with this because the norm is they don't know much about PCOS. I'm glad you have decided to trust your new doctor. But if you find that her treatments don't work and figure out that she's guessing (like I did) don't hesitate to find another doctor or even search for a wellness center to go to that specializes in hormones like I did. I did have another question for you. You said that your fasting insulin and glucose tests came back normal. Did she give you a 2 hour glucose tolerance test? My fasting tests always came back normal too but when I took the 2 hour glucose tolerance test my insulin levels were through the roof and so were my glucose leves to a lesser degree. The doctor said it's lucky that we did that test or it would have gone undetected until it developed into full blown Diabetes, which he says would have probably been within a year!! Your strong carb/sugar cravings make me think of candida yeast overgrowth and insulin resistance.

BRbangle · 04-28-2008, 07:31 PM

Pandora1151, thank you for the helpful information! I have a follow-up appointment with a naturopath next week, and I plan to take some of this info with me. I have hypothyroidism for which I take Synthroid, insulin resistance for which I take metformin, high testosterone levels despite taking metformin, and I am unwilling to be on birth control pills, even though I have been on Yaz for two months now. I have a sneaking suspicion that estrogen dominance is contributing to my high testosterone levels; and, yet, no one has ever checked my progesterone level! One thing's for sure--through various testing, it has been determined that my DHEA-S and pregnenolone levels are very low. Hopefully, I will know soon if progesterone supplementation is an option for me. Thanks again for your post!

Pandora1151 · 05-01-2008, 11:20 AM

Isn't it amazing that they aren't testing us for low progesterone, estrogen dominance, candida yeast, reverse T3, glucose tolerance and more?? WTF is wrong with these docs and endos? I don't understand how they can accept to treat a PCOS patient and not know about this stuff! I didn't want to believe this before, but after making such a miraculous recovery (and still getting better) and after close to 15 years of begging doctors for help and consistently getting worse, it makes me angry. They should know better!! They have a freakin' responsibility to know better if they are going to take our money or our insurance's money! I truly believe it's because they want us to stay sick so they can keep making big bucks off of us. The thing that made me trust my doctor the most was that he didn't participate with insurance. That's sad. I paid $1500 out of pocket for 5 visits. It was the best $1500 I've ever spent and it's only a fraction of what I've spent in the past trying to find real help - even with insurance! It's so good that you are going to see a naturopath. Please look into bio-identical hormone/thyroid treatments. They match human hormones exactly. They are so much less dangerous, less expensive and side effects are few and rare. How can you have a side effect from raising a hormone to its natural level in your body when the hormone matches your own exactly? Synthetic hormones have to be different from anything in nature in order to get patented. Patents = Profits. Drug companies have the ability to make these hormones to match our own but they purposely modify them so they can make more money! We take them, have horrible side effects and health risks which make us sick(er), which sends us back to them to get more patented drugs, which makes them rich!!! Think about the name of your thyroid medication - Synthroid. OMG! My sister takes that and she does feel much better. I'm not saying that they don't help at all. I had found a synthetic bcp and spironolactone that helped me tremendously at one point - until toxins from the synthetic ingredients started building up in my system and causing my bp to drop to dangerous death levels. My sister also happened to get pregnant a few months after starting treatment with Synthroid and she miscarried a couple months into her pregnancy. She was devastated. They told her it was because she wasn't producing enough growth hormone due to the low thyroid but was it really that? I wonder. I used to take Metformin too, even though my fasting insulin tests always came back normal (I asked about it and my doctor was like, well, let's try it and see what happens). I took it for 9 months in 2003 and then again for 9 months in 2007. Both times, it made me sicker than I was before taking it. Certain symptoms improved but then I had new symptoms to contend with and the symptoms that improved still weren't cured. I'm sick of these cycles of illness. I swear the health industry was killing me!

Sorry for the rant. When you said they haven't even tested you for low progesterone, it just set me off. I've had anger slowly building up in me over the last 2 and a half months of getting better so quickly. I'm not saying it's easy to change diet and lifestyle and all that but if I had known the right way to do it and about natural hormones, reverse t3 and candida yeast, among other things; had I been tested properly, I could have truly lived for the last 14+ years! I feel like I've been a ghost - a phantom of my true self.

I've been the best mother I could be and my kids love me a lot. But they are 15 and 18 now and I keep imagining how different their childhood would have been if someone had just helped me like this in the beginning of my illness. It would have been so much better...I wouldn't have been so tired, so irritable, so stressed out. I would have had more fun with them and been a lot less annoyed over the small stuff. It really hurts to know that PCOS robbed us of this and if doctors had known or cared to find out how to help me, things would have been so different. Why did it take so long to find help? It also hurts to know that my kids just thought that was my personality and so did I.

It hit me when the three of us were in an optometrist store in the mall, dealing with a new clerk who kept messing up our charges and I kept having to correct her. She had to swipe my credit card a few different times, which is a little nerve wracking when it's someone who doesn't know what they're doing. I wasn't tired or agitated at all...but my kids were flittering around me, rubbing my back, making encouraging remarks to me, telling me it would be okay, almost done, etc. They were so concerned about me because usually standing there for an hour, dealing with a stressful situation would exhaust me. Once I started feeling fatigued, I would get annoyed and my annoyance would quickly turn into anger. Then it would be hard for me to come down from that anger/rage for hours and I would isolate myself by locking myself up in my room because I knew I didn't want to take it out on my kids and I knew it was not rational to feel such intense aggravation over such a small situation. It's a cycle I've been going through for years. I shut myself away from my kids a lot in the past. By the time my daughter was 8 years old, I never had energy to play with them or take them to do fun, cool stuff anymore. It had to be a special occasion for me to muster up the energy and then I would be wiped out for a minimum of a week afterwards.

When we left the store, my son (18yrs old) told me he was so proud of me for handling that situation so well. I said, "Well, she was new. It wasn't her fault." Both of my kids looked at each other with raised eyebrows and kind of half smiled. That's when it hit me - how this illness has affected my kids. My daughter grinned and said, "Mom, you really are getting better!!" Then I just burst into tears, which distressed them again. I had to apologize to them and explain what I've learned about these health problems. I know I've been a good mom. I couldn't have such great kids if I hadn't been. But most of it was sheer willpower and it was like a chore to get through every day for most of their lives. And I damaged their confidence. I have to admit that. They are both a little nervous in general and I can't undo that, especially in my son because he's already off to college. Maybe it's not too late for me to undo some of the damage to my girl. I can't get those years back but I would give anything to be able to have felt this good back then. Now I just have to mourn what I've lost and move on. The future looks bright again but it hurts to look back at what has been.