PCOS/Insulin Resistance SupportSupport for us with any of the following: Insulin Resistance, Syndrome X, Polycystic Ovarian Syndrome, or other endocrine disorders.
I saw the reproductive endocrinologist yesterday afternoon. She went over what the regular endocrinologist had said, which is pretty much the following: They've done blood work 3 times in the last year (twice in the last 6 months) and each time the testosterone and insulin levels have gone up. But neither of them knows why the testosterone level and insulin levels continue to go up. They've tested me for everything from Cushing's disease to thyroid issues. I've had a CT scan (with dye) and an ultrasound and both were negative. She wants to repeat the ultrasound ASAP, and the CT scan within the next 6 months. She can't do either currently because of my insurance (I have to go to the contract provider), and I can't get in to the contract provider between the time I move (9 days from now) and time my old job cancels my insurance and the insurance from my new job kicks in. So I have to wait.
The reproductive endocrinologist is concerned that I'm not responding to the birth control pills (I occasionally have a cycle on them, but its light, and not anything resembling normal: I'll have it for one day, then not, then another, then not... and it doesn't follow the 28-day norm that is expected on the pills), and its not moderating the testerosterone level. She's also concerned because they don't know why I'm producing so much insulin, and of course, I couldn't handle the glucophage.
I also showed her my food log (I keep it on my palm pilot, so it graphs all the data, and keeps charts), and for the last 6 weeks there is only one day that I've gone over 2000 calories (and that was 2033). There is also only one day that I've gone over 200 carbohydrates in a day, and that was 232. So it was pretty clear that I'm not overeating, and I'm not eating a lot of carbs either. But there was no solution to be found there. And while the program on the palm is accurate, it is using USDA values, and I find that some of them are higher than the food labels on the packages... either smaller servings in the USDA, or less calories/carbs on the package for the same serving. So its possible that the values may be lower than I list.
At least she didn't throw her hands in the air and say she "tried", but didn't know what to do the way the medical endocrinologist did. And she didn't say she didn't want to see me again, though admittedly if she refers me to somebody at Hopkins, I don't know that I will see her again (well, maybe... I would guess the person at Hopkins wouldn't do primary care/maintenance of whatever it is I have, and she would?).
But now I'm on pins and needles for 9 days until I move and she makes the referral. And then for however many more days until my new insurance kicks in and I can get an appointment. I'm going to go looney-tunes .
I don't know how this works in all states, but here we have the COBRA program. It allows you to pay the full price (not the price you are used to paying by employer subsidizing) for 90 days until your new insurance kicks in. You have to call your Human Relations or your insurance company and ask for it, they don't volunteer it to you. Hope this helps!
Well, at least you now have a doctor on your side. Not telling you your crazy nor throwing their hands in the air.
It only took 4 medical endocrinologists, and countless OB/GYNs that my mother dragged me to when I was in high school or that I saw for annual check-ups who told me that there was nothing wrong with me. I've been seeing the current reproductive endocrinologist for about a year now, and I'm very reluctant to *stop* seeing her, just because she actually listened to me! I hope she would still remain primary, and the people she's referring me to at Hopkins would just be consultants.
200 carbs a day may not be alot for some people, but for those with PCOS, it may be too high.
I tried the Atkins diet 2 years ago. All I did was make myself sick... too much fat, and becuase I overproduce insulin (I'm not actually insulin resistant yet, but I do produce too much insulin), my body reacted badly. In any case, they don't think I have PCOS. I have some of the symptoms, but my testosterone level is way higher than anybody they've ever seen with PCOS. Currently the diagnosis is just Polycystic Ovaries, but not the syndrome/disease (she has both on her billing sheet), and an unspecific thyroid disorder.
Just a thought...
You've tried the Metformin with no success? I was on the Glucophage for 3 weeks for the original kind, and was sick every day, all the time. So he switched me to the XR, which was better... I still didn't dare eat anything other than peanut butter crackers and applesauce or drink ginger ale while at school... I wouldn't get sick, but I'd feel very nauseated. I always threw up dinner. He took me off the medication because I was so sick. And I gained weight while I was on it too!
My advice..stay away from the birth control pills. Just my own feelings. I feel that they do more harm than good. But were all different. What caused you to have that feeling? Without them I never, ever have a cycle at all. When I started seeing the reproductive endocrinologist, I hadn't had one since 1993... and prior to that I had maybe one a year or one every other year, and it appeared without warning. Now, at least, I have a cycle every other month or every two months. The birth control pills have not, however, lowered the testosterone level at all, nor helped with the secondary side-effects such as hair growth and thinning hair.
Good luck..and let us know what happens. Doesn't your old insurance have to carry you for a certain amount of time after you leave the job? My old insurance has to carry for me I pay the COBRA fee. I'm not going to pay that since I have insurance going to my new job. I just need to fill in the paperwork. My orientation is August 13. My old job insurance will likely lapse somewhere around August 20-August 30. I'd already paid my share of the July/August premium, and worked full-time during the summer for the district as a job placement specialist. Also, since I'm changing states, the old insurance won't do me much good... I'm not going to drive 50 miles to have an ultrasound when I'm practically around the corner from Johns Hopkins and the University of MD hospital center!
I agree, driving 50 miles would be a waste of time. Doesn't sound like you will have to wait very long for the new insurance.
Believe me, I understand how frustrating and real it is to have to find a doctor that will not only listen, but care. Don't give her up. Sounds like she is doing all that she can right now.
As far as the pill goes, I guess I feel that way because I was on the pill when I was younger because my doctor told me that was the cure to my irregular periods. Then they would regulate a little bit but be very painful. Maybe I live in a fairytale, but I want my own period. If am not getting it, that means something is wrong. He didn't believe me. Fast fwd 5 yrs and here I am trying to sort through this mess. I just feel that way too many doctors will push these pills down our throats without getting to the bottom of the problem. Which may end up causing more problems. Like I said, were all different, and pills may be a good thing for some, but for me, no.
Sounds like you've already been through the ringer between the meds and the Atkins plan. I really hope your docs can get figure out what is really going on.
I agree, driving 50 miles would be a waste of time. Doesn't sound like you will have to wait very long for the new insurance.
Believe me, I understand how frustrating and real it is to have to find a doctor that will not only listen, but care. Don't give her up. Sounds like she is doing all that she can right now.
I will drive the 50 miles to see the reproductive endocrinologist, but I only see her 4-5 times a year... and my insurance lists her as one of 3 females in the area (Baltimore-DC-Northern VA). I don't want a male OB/GYN. I'm also learning that male endocrinologists don't listen. I think she is doing what she can... this isn't her area of expertise, and that was initially why she pushed me to see a medical endocrinologist. She even hand-picked the last one I saw because I'd already seen 4 by that point. I saw him, and paid for it because he didn't accept my insurance. He listened, at least... but he didn't know what to do either after the glucophage made me sick.
As far as the pill goes, I guess I feel that way because I was on the pill when I was younger because my doctor told me that was the cure to my irregular periods. Then they would regulate a little bit but be very painful. I see... In my case, they aren't painful... At least, not anymore than they were when I had them at the start. And she didn't put me on the birth control right away: she did two blood draws and a round of Provera first, plus an ultrasound. She really investigated things before that, and went over 2 or 3 different types with me. She has spent at least an hour with me each time I've seen her. I really appreciate that, because the other doctors I saw before that time either hurried me up or didn't do what they said (I saw a doctor who said he specialized in weight-loss, at the recommendation of my orthopedist (for my ankle), who lied about the bloodwork he ordered. My mom and I went to the initial appointment and asked him to do bloodwork to rule out the possibility of thyroid or hormonal issues, and all he did was a standard CBC. Nothing else. I found out when my GP showed me the results, since she got a copy of them too. It turns out his "specialty" was a medical study on how weight loss surgery effected people with orthopedic impairments! I was LIVID!)
Maybe I live in a fairytale, but I want my own period. If am not getting it, that means something is wrong. He didn't believe me. Fast fwd 5 yrs and here I am trying to sort through this mess. I agree with you... but all the years I didn't have my cycle the doctors told my mom and I that it was normal for young people (teens) to have an irregular cycle... or there was nothing to worry about, I could just have a D&C done if it was more than 6 months at a time!
I just feel that way too many doctors will push these pills down our throats without getting to the bottom of the problem. Which may end up causing more problems. Like I said, were all different, and pills may be a good thing for some, but for me, no. That is kind of how I feel about the glucophage, although the endocrinologist at least monitored it. He was kind of upset with me that I wasn't more specific about HOW sick it was making me. I had just called his office and told the nurse it was making me sick. I didn't go into detail, or push the issue because his nurse told me it was normal to have these side-effects. My reproductive endocrinologist was upset with me too...
Sounds like you've already been through the ringer between the meds and the Atkins plan. I really hope your docs can get figure out what is really going on. I do too. I got my calorie tracker program back for my Palm (the database was corrupted, so I lost all my 6 week data and have to start again), but I'm still under 1600 calories most days, and 200 carbs. According to that, I should lose 2 pounds a week just chasing my students! Yea, right. If only it were that easy.
Its very upsetting, because I know people look at me and assume that I eat constantly. And I don't. I have skinny students who don't do anything but rock or sit (I have one that is bone thin, eats White Castle Hamburgers and Taco Bell for lunch, has to be TOLD to stand up to go somewhere...) who eat more than I do! Between the weight, and my hair coming out, I'm a great target for the middle school age kids I teach regularly. I did find that Hopkins also has a weight management center... maybe while my reproductive endocrinologist is writing referrals I'll ask her for one there too... At the very least they could help me find some exercise I can do since I can't do a whole lot with my ankle.
I am sorry. I try to avoid going on like that, but today was one of those days at school. There are only 1.5 days left in the summer program, and we have a couple of special events upcoming, so the kids are excited and out of sorts.
So on top of all this...you are working full time as a teacher too? Yes... But I'm not just a regular teacher, I'm a special education teacher. I teach students with severe learning disabilities, neurological impairments, physical impairments and mental ******ation. This summer I'm working with students with moderate to severe mental ******ation, and autism. My new position is going to be at a private vocational high school teaching computer literacy to those with severe learning disabilities and mild mental ******ation. In the past I've been a "life skills" teacher, and this summer I was doing job placement/training.
Kids can be a hand full, and even more so when you feel so horrible.
I actually don't feel horrible now that I'm not on the glucophage... The last quarter of school was pretty bad though. I couldn't eat, but I didn't take any time off either. I kept going, every day, because I wanted my two days off for my graduation (finished my Master's degree). But the kids are still a handful. I wasn't joking when I said I should lose weight chasing after them! We have a couple of runners in the program this summer.
How come they ruled out PCOS (the syndrome)? Just curious.
[/COLOR] [/B][/QUOTE] Because of the extremely elevated testosterone levels, and some of the other bloodwork. They said that even with PCOS, they've never seen such high levels before, except with a tumor or nodule of some type. But, as I said, the CT scan and the ultrasounds were all negative. Also, they said that producing too much insulin isn't usually a side-effect of PCOS. I have really high levels of insulin. Usually, the person with the syndrome just can't use the insulin they do produce correctly. I don't get the tiredness after meals or any of the other symptoms of insulin resistance. I also have lower blood pressure than they normally see with PCOS. There are some other blood results that are making them think that there is something else going on, like an elevated liver enzyme result.
Wow, I am sorry you are having a problem with treatment! I hope you find a PCOS specialist that can get down the bottom of this. I'd like to give you my non-medical opinion if you don't mind!
I noticed you said the high insulin is not a symptom of PCOS. It is really one of the major symptoms of the syndrome. It is true that your body doesn't use it correctly with insulin resistance, but that is found with the fasting insulin test. It has been found in recent years that if your insulin is too high, then that can in turn raise your testosterone, which will make your periods absent and also, the testosterone can be causing male pattern baldness.
How high was your Gluc XR dosage? Did you slowly raise your dosage, or did you go up quickly? How high is your fasting insulin?
Did they try another insulin lowering drug, like Avandia?
Like Jenniffer said, 200 carbs is low to some, but to most insulin resistant people, it is still way too high. You might want to look into lowering your carbs, or maybe the type of carbs. You don't necessarily have to go high fat to go low carb. Protein Power is not as high fat as Atkin's. Have you researched the Glycemic Index? High glycemic foods can be a source of weight gain for many people. I did WW and gained 4 pounds in a month. As soon as I cut out potatoes, pasta and a few other things, weight was more managable. You can eat a lot of potatoes, bread and pasta for 200 carbs, but the glycemic index is so high that it will cause a spike in your blood sugar, which will cause a spike in insulin, to burn it all off. Since you are insulin resistant, you keep making more insulin, which is helping you gain more weight, which affects your insulin, which affects your testosterone, etc. It is just a big, bad circle! Sugar Busters and The Schwartzbein Principle are also lower fat diets that reduce carbs and the types of carbs that are eaten.
My blood pressure is normal as well, and like you I have an elevated liver enzyme (ALT enzymes). I found by ultrasound and by scope that I have Fatty Liver. That comes mostly with obesity and age. It isn't too uncommon if you have been overweight for a long time. Why don't you read some of the stickys on this forum and see if there are some other symptoms you might have that you haven't thought about mentioning to your doctor. My endo tells me (and I have read the same) that the list of symptoms are not inclusive or exclusive. We all might vary in symptoms. You can have some and not others, or just a couple, or all of them. It is a collaberation of a handful of symtoms to make the diagnosis. It really doesn't matter if the name 'PCOS' has been titled to you or not, though, because there is no treatment for it really, just treatment for the symptoms. If they can manage your insulin, hopefully that will bring some other symptoms down. I am managing my insulin well with diet and drugs and my face is now clear, hair isn't falling out, etc.
I am sorry you have had a hard time with male doctors. My endo is a man, and he is a partner of Dr Sam Thatcher, who wrote the book PCOS: The Hidden Epidemic. They are both just wonderful. My doctor doesn't do much other than PCOS patients. I strongly recommend that book if you haven't read it. More and more strives are being made in diagnosing and treating PCOS and the symptoms. I hope you can go to John Hopkins and get tested further and find an answer!
Originally posted by Jennifer 3FC Wow, I am sorry you are having a problem with treatment! I hope you find a PCOS specialist that can get down the bottom of this. I'd like to give you my non-medical opinion if you don't mind!
Well... I do have a specialist. She's a reproductive endocrinologist and she does infertility and PCOS. She doesn't think, nor does the endocrinologist I saw that I have it. They think there is something else going on.
I noticed you said the high insulin is not a symptom of PCOS.It is really one of the major symptoms of the syndrome. It is true that your body doesn't use it correctly with insulin resistance, but that is found with the fasting insulin test. It has been found in recent years that if your insulin is too high, then that can in turn raise your testosterone, which will make your periods absent and also, the testosterone can be causing male pattern baldness. I think what I said came out wrong... First off, I'm not insulin resistant as far as they can tell. I have absolutely ZERO symptoms in that regard, and don't spike in the blood sugar on the fasting insulin test. But the insulin remains consistantly high, even if I eat nothing. And there are days that I do just that.
How high was your Gluc XR dosage?
500 mg a day. I was also on regular glucophage. I tried both of them for well over 2 months (March to July).
Did you slowly raise your dosage, or did you go up quickly?
I never made it past 500 mg. I couldn't. The first type made me sick all day, where even the smell of food would make me throw-up. The XR wasn't as bad, the smell of food just made me nasueasted, but I still couldn't keep anything substantial down... I was living on peanut butter crackers, white rice, and applesauce. Occasionally I could eat a bagel or some cheese or a hot dog (chicken/turkey), but those were rare. And no matter what I ate for dinner, and no matter when or how I took the glucophage, I always threw up most of what I ate about an hour after taking it.
How high is your fasting insulin?
I'd have to find the results, butI actually think the glucophage made the blood sugar worse because I couldn't eat anything but the above foods, and those are just terrible in terms of carbohydrate load. My blood sugar has been around 70-90 most times for the testing. But the insulin is still very high.
Did they try another insulin lowering drug, like Avandia?
I can't take Avandia either. The endocrinologist won't give it to me because it can cause liver damage (and I already show the elevated liver enzymes), and because it can cause weight gain, plus water retention in the legs. I already have water retention in my left leg from the nerve damage to my ankle. I have some, but not a lot, on the right leg because that leg takes most of the action in walking, or standing because my left doesn't work correctly. The endocrinologist wasn't willing to risk it.
Like Jenniffer said, 200 carbs is low to some, but to most insulin resistant people, it is still way too high. You might want to look into lowering your carbs, or maybe the type of carbs.
I have done, as I said, the Atkins diet and it was almost as bad as being on the glucophage. I was tired all the time, nauseated a lot of the time, and grouchy as ****.
You don't necessarily have to go high fat to go low carb. Protein Power is not as high fat as Atkin's.
I haven't looked at that one.
Have you researched the Glycemic Index? High glycemic foods can be a source of weight gain for many people. I did WW and gained 4 pounds in a month. As soon as I cut out potatoes, pasta and a few other things, weight was more managable.
I have, but since most foods have not been tested and don't have a glycemic index listed, its hard to do. I don't eat potatoes often, or pasta. I do eat more rice, but I've even cut that pretty much.
You can eat a lot of potatoes, bread and pasta for 200 carbs, but the glycemic index is so high that it will cause a spike in your blood sugar, which will cause a spike in insulin, to burn it all off.
Right, and supposedly then you "crash" if you're insulin resistant. I don't. I don't get the dizziness or tiredness or cravings that other people get. I'm hardly ever hungry, and maybe once a week eat more than 2000 calories a day.
Since you are insulin resistant, you keep making more insulin, which is helping you gain more weight, which affects your insulin, which affects your testosterone, etc. It is just a big, bad circle! Sugar Busters and The Schwartzbein Principle are also lower fat diets that reduce carbs and the types of carbs that are eaten.
I'm not insulin resistant though, or at least, I'm not yet. But I will be if they can't figure out how to get the insulin level down.
My blood pressure is normal as well, and like you I have an elevated liver enzyme (ALT enzymes). I found by ultrasound and by scope that I have Fatty Liver. That comes mostly with obesity and age. It isn't too uncommon if you have been overweight for a long time.
I had an ultrasound, my liver is normal. There is no physical reason for the elevated enzymes. I also had a CT scan, which was also normal.
Why don't you read some of the stickys on this forum and see if there are some other symptoms you might have that you haven't thought about mentioning to your doctor.
I've read them, and while I have some of the symptoms, the medical doctors do not think I have PCOS.
My endo tells me (and I have read the same) that the list of symptoms are not inclusive or exclusive. We all might vary in symptoms. You can have some and not others, or just a couple, or all of them. It is a collaberation of a handful of symtoms to make the diagnosis. It really doesn't matter if the name 'PCOS' has been titled to you or not, though, because there is no treatment for it really, just treatment for the symptoms.
Right. But they aren't comfortable saying that is what I have, and have been testing for other things including Cushing's Disease which has the same symptoms as PCOS. I have more of the symptoms of Cushing's that I do of PCOS. In fact, I have almost all of them: redness on the face and arms, brittle fingernails, thinning hair, high insulin, unusual pain in the spine etc.
If they can manage your insulin, hopefully that will bring some other symptoms down. I am managing my insulin well with diet and drugs and my face is now clear, hair isn't falling out, etc.
I can't take the drugs. Obviously, with the high insulin level, I'm not losing weight either. I never have had acne. I also still don't have a regular cycle with the birth control pills though its more likely that I will have one while on the pills than it was when I was not.
I am sorry you have had a hard time with male doctors. My endo is a man, and he is a partner of Dr Sam Thatcher, who wrote the book PCOS: The Hidden Epidemic. They are both just wonderful. My doctor doesn't do much other than PCOS patients. I strongly recommend that book if you haven't read it. More and more strives are being made in diagnosing and treating PCOS and the symptoms. I hope you can go to John Hopkins and get tested further and find an answer!
Thanks. If it were as simple as saying that I have PCOS, I think they would have done that. They certainly wouldn't be referring me to Johns Hopkins if they thought it was just PCOS, and that was why I can't lose weight and why my testerosterone and insulin levels are so high. And that is really the key: The testosterone goes up EVERY time they do bloodwork, and it shouldn't be continuing to go up with the birth control pills.
If it were just PCOS, and a low carb diet worked, that is what I'd be doing. Or if they thought it was just PCOS, and it was a weight-loss issue (or an eating issue) they'd refer me to a weight-loss program. There are quite a few medically supervised weight loss programs in this area, and Hopkins runs one also.
What else is there?
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