# Misdiagnosis or Alternative Diagnosis of PCOS



## ktdidnt (Jun 17, 2011)

This is totally TL;DR, but whatever.

I have had irregular periods since I started having them at 10-11 years old. I was put on the pill at 17 to regulate it and I took that for 4 years before stopping voluntarily. Since then I have gone back to irregularity where as of now my last period was in October. So I have been going to the gyno and she has done lots of blood work and ultrasounds etc and ended up telling me that I didn't have cancer of any kind, and based on my test results she said I didn't have PCOS or anything like that. My mother has always had concerns about hormonal issues since I was a child because when I hit puberty I gained pretty much all my current weight. I have been basically the same size since I was 16... now 25. I mean I still fit in to high school jeans on a good day. The only time I have been able to lose weight in my adult life is when I was on the birth control. Where most people I know gain weight I became the smallest I have ever been since I was a preteen. So, bearing that in mind my gyno referred me to an endocrinologist. 

Yesterday was my appointment with her and almost as soon as she walked in she goes "I'm pretty sure you have PCOS." Today I had a glucose intolerance test and she prescribed me a medicine to force me to bleed and basically told me to lose weight and when she gets the glucose test results back she will prescribe me metformin.

I have so many issues with this diagnoses I don't even know where to start. For one my weight is spread all over, I am very proportional not apple shaped with abdominal weight like PCOS typically displays and my weight gain was not gradual by any means. It was nearly immediate. My mother likes to tell the anecdote that I went from the children's section to Lane Bryant in a year in a half without shopping in any section in between. I do not have acne or oily skin etc, my cholesterol and blood pressure have always been perfectly normal even at my size. I am not sure if I qualify as excessively hairy as I am hairier than my mother, but am similar to my friends (who are thin and healthy). I do have a friend with PCOS and she has always been way hairier than me, even when we were kids. Our body hair isn't comparable, imo. I don't have diabetes or pelvic pain. Really only the irregular periods, weight and a slightly elevated level of testosterone are the only symptoms of PCOS I feel I display. 

But are the displayed symptoms enough to diagnose me with this? Should I push on and pursue another doctor? 

And the fact that one doctor who I feel was extremely diligent ruled it out and another who spent 5 mins with me before making this diagnoses bothers me. I feel like I am being prejudged without taking into account my full history. Like she saw a fat chick with no period and was like "ugh duh PCOS." Am I being ridiculous? Confrontational? Purposefully and unconsciously contrary?

ETA: Also about 2 years ago I was diagnosed with bipolar disorder as well. Since researching PCOS I have found that some hormonal conditions present with depression. I was very depressed as a teenager and went to therapists on and off and it wasn't until I was 23 and brought up bipolar in therapy that I was referred to a psychologist who diagnosed me with bipolar but not the serious manic hallucination kind. Rather it is depression with hypomania. I tried a few different types of medication for bipolar, none that really worked well for me until I was put on prozac which is an antidepressant (SSRI) and it works great. This PCOS stuff is making me question my bipolar diagnoses too. What if its really depression that is a result of a hormonal condition? 

Yeah I pretty much don't know what to do with all this information either.


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## Diana_Prince245 (Jun 17, 2011)

It never hurts to get a second opinion, especially for something like PCOS. As for the bipolar, it's really trendy right now.


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## Fat Brian (Jun 18, 2011)

My wife was diagnosed with PCOS about 7 years ago. She doesn't have all of the physical presentations either, she lacks the excessive hairiness and acne also. If you truly feel like the endocrinologist didn't thoroughly investigate your condition by all means get a second opinion.

Let me give you a word of caution about Metformin, it made my wife gain a considerable amount of weight. Even at a quarter of the recommended dose it dropped her blood sugar very low, and the only real fix was to eat more. If there isn't a history of diabetes in your family and your insulin level isn't severely whacked you might not need it.

Crystal also has Bipolar II among other things, she takes Prozac and Klonopin along with a few other meds. It seems like when you have one imbalance others follow.


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## ktdidnt (Jun 18, 2011)

> Let me give you a word of caution about Metformin, it made my wife gain a considerable amount of weight. Even at a quarter of the recommended dose it dropped her blood sugar very low, and the only real fix was to eat more. If there isn't a history of diabetes in your family and your insulin level isn't severely whacked you might not need it.



Really? I was told that the Metformin would probably make me lose weight? I don't particularly care to lose weight and wouldn't complain if I did, but I certainly don't want to deal with medication that causes me to gain weight again.


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## Fat Brian (Jun 18, 2011)

The doc told her she would lose too. This may not be typical but was true in her case.


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## Kamily (Jun 19, 2011)

ktdidnt said:


> Really? I was told that the Metformin would probably make me lose weight?



My daughter was on Metformin and was told it would make her lose weight, but it didnt.


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## Fat Brian (Jun 19, 2011)

Don't ever forget, doctors are idiots, most have been educated far beyond their intelligence. If something doesn't seem right get a second opinion.


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## Miss Vickie (Jun 20, 2011)

ktdidnt said:


> This is totally TL;DR, but whatever.
> 
> I have had irregular periods since I started having them at 10-11 years old. I was put on the pill at 17 to regulate it and I took that for 4 years before stopping voluntarily. Since then I have gone back to irregularity where as of now my last period was in October. So I have been going to the gyno and she has done lots of blood work and ultrasounds etc and ended up telling me that I didn't have cancer of any kind, and based on my test results she said I didn't have PCOS or anything like that. My mother has always had concerns about hormonal issues since I was a child because when I hit puberty I gained pretty much all my current weight. I have been basically the same size since I was 16... now 25. I mean I still fit in to high school jeans on a good day. The only time I have been able to lose weight in my adult life is when I was on the birth control. Where most people I know gain weight I became the smallest I have ever been since I was a preteen. So, bearing that in mind my gyno referred me to an endocrinologist.
> 
> ...



KT they gave you a lot of information. It sounds like your doctor did a lot of good testing to come to the conclusion that you don't have PCOS. Diagnosing PCOS can be difficult, and a lot of people assume that if you're fat you MUST have PCOS if you have irregular periods. I even had a doc try to use the diagnosis on me because I used to have singular, large ovarian cysts and had regular periods, no other symptoms, etc. I think it's become sort of a catch all diagnosis for a bunch of different kinds of hormonal imbalances. 

Just because you have irregular periods doesn't mean you have PCOS. Testing you for glucose intolerance is a good idea because that is part of PCOS, and it's one of the most concerning parts of it. It's not that big of a deal having irregular periods unless you're getting lots of cysts on your ovaries (which can affect fertility) or are wanting to get pregnant (irregular cycles without regular ovulation makes conception hard). However, the insulin resistance can affect you long term, increasing the likelihood of diabetes and contributing to heart disease. So the glucose tolerance test and subsequent utilization of Metformin is a good idea. 

As for whether Metformin will help you lose weight, it depends on why you've gained weight. If you have gained weight because of and in response to insulin resistance then it will help because it makes your cells more receptive to insulin. Insulin is a hormone your body makes which tells it to be hungry and store fat. It also causes inflammation in your blood vessels and so is correlated to heart disease. So if you have high insulin levels (which may or may not show up in a GTT test -- I like the Glucose/Insulin tolerance tests myself), taking Metformin will help with that and lower your insulin levels which may help you lose weight. 

So, that's what the Metformin is for. Sometimes losing some weight and getting your insulin under control will normalize your periods.

The medication to cause a period is likely a progesterone drug. So you take the drug, then go off the drug, and when you stop taking it, your endometrial lining (the stuff that makes your period) will shed. Do they have plans, after that, to put you on birth control pills? I think it's reasonable to take oral contraceptives to regulate your periods as long as you're not 35 and a smoker. Being heavy puts you at somewhat of a risk in taking estrogen so they'll probably put you on a lower dose estrogen but it's pretty routinely prescribed for people with irregular periods. 

BTW, I assume they also checked your other hormone levels? Like thyroid and TSH? Those can affect your periods as well. And I assume they've done ultrasounds of your ovaries, to determine if you have cysts?

I hope this helps. I'm in school to be a nurse practitioner and have been studying this stuff all year so it's fairly fresh in my mind. My reflections to you aren't meant to be a diagnosis or treatment plan, but rather just sharing how the providers I've worked with have cared for women with similar symptoms.

A really great website about PCOS is www.soulcysters.com. It's amazing how many different combinations of symptoms people have that are all lumped into the PCOS diagnosis. Very knowledgeable group of people and helpful site.



Diana_Prince245 said:


> It never hurts to get a second opinion, especially for something like PCOS. As for the bipolar, it's really trendy right now.



It seems like it with Bipolar, doesn't it? I seem to see a lot of late teen early twenties patients who are diagnosed with bipolar, not on meds, etc. I wonder how much of that is just teenage angst. I'm glad they came up with the Bipolar Type II diagnosis, which is less severe than what we traditionally call bipolar disorder.



ktdidnt said:


> Really? I was told that the Metformin would probably make me lose weight? I don't particularly care to lose weight and wouldn't complain if I did, but I certainly don't want to deal with medication that causes me to gain weight again.



It would really be unusual to gain weight on that medication. Because it normalizes blood sugar regulation, it should cause weight loss, but only if insulin resistance were a problem. I ended up not gaining or losing but getting really sick on it. But they have extended release forms of the medication now, which are much gentler.



Fat Brian said:


> Don't ever forget, doctors are idiots, most have been educated far beyond their intelligence. If something doesn't seem right get a second opinion.



If all doctors are idiots, who would you get a second opinion from? Unless of course you mean nurse practitioners, which I happen to think are pretty awesome. But maybe you think we're idiots, too.


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## Jes (Jun 20, 2011)

Diana_Prince245 said:


> As for the bipolar, it's really trendy right now.



Ouch.

Way harsh, Tai.


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## Miss Vickie (Jun 20, 2011)

Jes said:


> Ouch.
> 
> Way harsh, Tai.



Harsh, but it does seem like there are certain diagnostic trends that happen in medicine. Years ago everyone was dyslexic. Then OCD. Now it's ADHD. I don't think she's saying it's trendy for the individual, but rather that some of the practitioners practice that way. 

Anyway, I can't speak for her. But that's what I meant. I keep seeing all these well adjusted young women stuck with a bipolar diagnosis and I worry how it will affect their future. I know that in order for me to get my license renewed, I have to "confess" any mental health treatment I've had.


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## Diana_Prince245 (Jun 20, 2011)

Yea, I meant it's trendy for doctors and counselors to diagnose people with bipolar, not that kt was being trendy.


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## ktdidnt (Jun 20, 2011)

> I hope this helps. I'm in school to be a nurse practitioner and have been studying this stuff all year so it's fairly fresh in my mind. My reflections to you aren't meant to be a diagnosis or treatment plan, but rather just sharing how the providers I've worked with have cared for women with similar symptoms.
> 
> A really great website about PCOS is www.soulcysters.com. It's amazing how many different combinations of symptoms people have that are all lumped into the PCOS diagnosis. Very knowledgeable group of people and helpful site.



Miss Vickie thanks for the thorough reply. I have visited the soulcysters site but didn't spend too much time on it. I guess I should revisit it again. 

I posted this thread soon after my doctors visit and now that I have had a weekend to mull it over I think I am gonna search out another endocrinologist to see. I think if she were as thorough when speaking with me and not just walk in and see a fat girl with no period and make a judgement I would accept her diagnoses with more validity. She may very well be correct but I am uncomfortable accepting a diagnoses that I feel is colored by bias when I already had one doctor tell me differently. 

Thanks for all your comments guys.


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## Fat Brian (Jun 20, 2011)

Miss Vickie said:


> If all doctors are idiots, who would you get a second opinion from? Unless of course you mean nurse practitioners, which I happen to think are pretty awesome. But maybe you think we're idiots, too.



Its a way of thinking that prevents a person from feeling that doctors are infallible and their diagnosis is not to be questioned. I've seen quite a few family members trot off to the same doctor year after year, being treated for the same old thing when suddenly, something with similar symptoms takes them out because the doctor never bothered to check anything but his first guess.


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## Miss Vickie (Jun 20, 2011)

Fat Brian said:


> Its a way of thinking that prevents a person from feeling that doctors are infallible and their diagnosis is not to be questioned. I've seen quite a few family members trot off to the same doctor year after year, being treated for the same old thing when suddenly, something with similar symptoms takes them out because the doctor never bothered to check anything but his first guess.



But how does saying they're all idiots help? I think perhaps it's more productive to say that, like people in general, health care providers aren't perfect and have their limitations and biases and should always be questioned. Further, I think it's crucial that we all, fat or thin, healthy or ill, should be partners in our own health. You live in your body and are the expert where your symptoms are concerned. The doctor has more knowledge, to be sure, but they can only be as helpful as the information they're provided. As someone who's spent the last school year taking histories from patients, let me tell you that not all histories are created equal; I can do a LOT more for a patient who can communicate what's going on. I don't need a diagnosis, but I do need information.

I don't know what doctors are taught in medical school but in NP school we're taught to come up with 4 or 5 or 6 (or sometimes more) differential diagnoses to explain what's going on with a patient and have treatment plans for each; it's part of my learning. I always tell the patients that based on their symptoms and signs I think it's Diagnosis A but it could also be B,C,D, E or F. And if they don't respond to the treatment to A, I ask them to please come back and we'll look at the other diagnoses and modify treatment. Two people may have identical symptoms but because of their age or gender, one diagnosis might be more likely for one than the other. Sometimes it's almost literally a crapshoot between the two diagnoses and I will ask the patient which treatment they're more open to try first. 

But I know that often patients don't come back, even if we didn't get it right; they just gripe about it. I know because I've been that patient. But I think by having an open dialogue between provider and patient, the patient is more likely to come back (or at least call) so that we can investigate options for other treatments).

Do I think doctors are infallible Gods? No. Are they morons? No. They're educated professionals with the benefit of some really great knowledge. I like to utilize that knowledge to pick up where mine leaves off. Since even the smartest of us can't possibly know everything.


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## Fat Brian (Jun 20, 2011)

Its not meant in a personal way, to indite any one person. Its something easy to remember, like saying that lawyers are crooks or politicians are liars. It seemed to me like the endocrinologist the OP went to was not giving her due diligence and if she was concerned that the diagnosis was incorrect she should by all means pursue a second opinion. I don't want anyone to think that what a doctor says is the unimpeachable gospel.

I hurt my back moving furniture a few weeks ago and last week finally got to a doctor. I told the nurse all about what happened and how I hurt myself and I told her I wanted an xray to make sure I didn't damage anything because I should be feeling somewhat better by now and I'm really not. A few minutes later the musclebound doctor comes in and looks at my chart and asks me to do a resistance tests. Instead of an xray he tells me I'm fat and have a weak core and that my back is going to hurt until I lose weight. This is why doctors are idiots, I know the exact instant I hurt myself and it has nothing to do with my weight but because I'm fat I get the brush off. I'm just another fatty with back pain. I am getting a second opinion.


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## Miss Vickie (Jun 21, 2011)

Fat Brian said:


> Its not meant in a personal way, to indite any one person. Its something easy to remember, like saying that lawyers are crooks or politicians are liars.



Or like saying all fat people are face-stuffing layabouts, right? Can you see how you're doing the very same thing, albeit not in a professional atmosphere? Misunderstandings like the ones you perpetuate do nothing to bring cooperation between the two groups. It just makes patients afraid of doctors and doctors hate to take care of fat people.

I agree that the OP got poor information, which is why I tried to supplement what she had through actual information. Not invective.



> A few minutes later the musclebound doctor comes in and looks at my chart and asks me to do a resistance tests. Instead of an xray he tells me I'm fat and have a weak core and that my back is going to hurt until I lose weight.



Okay, well, the fat comments aren't okay but it's very possible that the doctor learned as much from the resistance tests as he would have learned from an x ray. X rays show very little, actually, unless you broke a bone, which is unlikely with a back injury. It might show a disc injury but if you didn't have neurological symptoms, then that would be incredibly unlikely. Most likely it's as he said (fat comments notwithstanding). You probably have a weak core (most of us do), you overdid it and got an injury (it happens) and you need to rebuild. Burtimus went through the same thing. Fat guy, healthy guy, great back until... he had an injury and then it wasn't. Now, ten years later, he still struggles despite chiropractic, exercises, physical therapy, massage, and weight loss. All it takes is one injury. Weight isn't the cause, but it doesn't help either. OTOH, neither does being bipedal. 

I would have set you up with physical therapy, and maybe referred you for massage. I would have given you gentle, passive exercises to do and shown you ways to move and lift carefully. I would have offered pain medication and home care techniques. I would have encouraged you to stay active.

I'm glad you're getting a second opinion, because I think -- given what you've said -- that you weren't given adequate treatment, unless of course the doctor offered the things I recommended which is standard of care for a back injury. However, not doing an x ray at this point in your recovery is also fairly standard for the injury you describe.

If you're interested in knowing what the standard of care is, you can go to a great website and look up evidence based guidelines for anything you may be facing. It's great. You can even print them out and bring them with you to doctor's appointments. Providers are supposed to practice by these guidelines, so they can be useful for patients to know what to expect. It's definitely an eye opening experience.


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## Fat Brian (Jun 22, 2011)

Miss Vickie said:


> Or like saying all fat people are face-stuffing layabouts, right? Can you see how you're doing the very same thing, albeit not in a professional atmosphere?



All I'm saying is to not put them on a pedestal or act like they are infallible higher beings. They have all of the same biases and failings we do and if a person thinks they weren't treated fairly and with diligence as a patient they should not have any qualms about getting further assistance elsewhere.

As for my trip to the doctor I did report nerve issues, I have shooting pain in both legs and numbness in my lumbar area when standing. I have had previous low back injuries and had at least compressed disc and had partially herniated another one. I'm normally in a fair amount of pain which is somewhat responsible me being fat in the first place.


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## Miss Vickie (Jun 22, 2011)

Fat Brian said:


> All I'm saying is to not put them on a pedestal or act like they are infallible higher beings.



And are you finding any disagreement from me?

The difference between calling them idiots and saying they're infallible is enormous. Believe me, I work with them every day. Every day I have to say, "Uhm, do you really mean to order that?" Yesterday one of our midwives ordered me to give a newborn Narcan, which is in direct contradiction to the neonatal resuscitation program (NRP) that we both are taught. I said, "Oh, the baby's doing fine. I think we're good" because giving Narcan to the baby of an opioid addicted mom can have disastrous results. So yeah, I think I understand better than you since I work with them just what their limitations are. 

Pedestal? You've got to be kidding. They KNOW I know more about my patients than they do, and they ask ME what I think the patients need. If I were to come to a doctor with a patient's problem without at least one suggestion for treatment, they would think I was a total dumbass and be disappointed in me. Critical thinking is drummed into our heads in nursing school, and long gone are the days when doctors expect not to be questioned. I absolutely wouldn't work for, or go to, a doctor who couldn't handle being questioned.



> They have all of the same biases and failings we do and if a person thinks they weren't treated fairly and with diligence as a patient they should not have any qualms about getting further assistance elsewhere.



I believe I said that three posts ago. 



> As for my trip to the doctor I did report nerve issues, I have shooting pain in both legs and numbness in my lumbar area when standing. I have had previous low back injuries and had at least compressed disc and had partially herniated another one. I'm normally in a fair amount of pain which is somewhat responsible me being fat in the first place.



Then _*that*_ doctor is an idiot. But that doesn't mean that all, or even most, doctors are. Weight often does exacerbate disc problems (more pressure on disc = more pain, plus excess abdominal weight pulls against the weakened connective tissue of the spine, exacerbating lordosis, which also makes disc herniation worse) but it's obviously not the only answer; not to mention the fact that it's hard to exercise when you're in pain. The neurological symptoms you describe would be enough to for me to order an x ray or MRI (probably MRI because you get a much better look at soft tissue which is most likely your problem, but I suspect you know that). 

Did they recommend an abdominal binder to support your low back? I've seen that recommended during acute injuries, with good results. Ultimately, you need to strengthen your core so this would work against that but initially, while you're healing, supporting your back would be probably relieve some of your pain. 

Best thing I've used to strengthen my core? A fitness ball. I threw out my office chair which was making my back pain worse, and use a fitness ball at my desk. That way I'm constantly exercising my core in order to stay sitting up. It's been great and made a huge difference with my back.


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## Fat Brian (Jun 23, 2011)

I'm not implying that you are putting them on a pedestal but rather that some patients don't participate in their care and merely take the doctors word for Gospel. Going through all I've been through with doctors regarding Crystal and her fibromyalgia has given me a healthy distrust of most doctors. Its sad to go in to see a professional about something and you end up schooling them. We've done so much research we could open our own clinic.


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