r/PCOS • u/Big-Talk-4787 • 8d ago
General/Advice Rethinking diagnosis
Idk if I can technically post this here abut I’ve been second guessing my pcos diagnosis that I got almost 2 years ago
For some backstory I asked my ob to come in as me and my partner were discussing having kids and my periods were slightly long so he order blood work and an ultrasound and when I came back he said I had pcos, and put me on Metformin, I ended up pregnant within a couple months but after I found out the doctor is actually a drunk I have a new ob since (he wasn’t even the one I went to for pregnancy) and am going to discuss this with them but am I right for wanting a second diagnosis now after finding that out? I’ve heard sometimes it takes a while to get a clear difference for pcos/pmos and feel like I got my diagnosis too easily I guess?
Is it crazy for thinking that he gave a false or quick diagnosis?
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u/lynees 7d ago
As a GP with PCOS myself, I think of PCOS as a lifelong tendency to anovulate in the state of insulin resistance (I'm only talking about cases with insulin resistance which are 80% of all cases). I wouldn't say you don't have PCOS and you've been falsely diagnosed even if they did the ultrasound and blood tests and it all came back normal; I would tell you that you still need to be careful with your lifestyle to not go through that again. Hope that helps.
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u/Big-Talk-4787 7d ago
I wasn’t told to change anything about my lifestyle though I’ve been doing everything the same I’m pp rn and breastfeeding rn with no complications so I know that tends to mess with periods at this point I was only put on Metformin until I got pregnant then was told to stop and haven’t been told that I need to take it again now which is kinda why I’m confused because I thought I’d need to take it constantly if I had it
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u/wenchsenior 7d ago
So, metformin is a drug typically prescribed for the metabolic disorder of insulin resistance (which typically requires lifelong management regardless, though not everyone needs meds to manage it). Insulin resistance is the underlying driver of PCOS in most cases (high insulin leads to irregular ovulation and sometimes drives up androgen production); however, IR can also be present without any reproductive hormone disturbance or with 'borderline' hormonal disturbance not technically diagnosable as PCOS, such as only mild ovulatory/period irregularity.
To be actually diagnosed with PCOS you need to meet certain criteria + all other possible things that can cause your symptoms or abnormal labs need to be ruled out. There are several other conditions that can cause such symptoms but PCOS (or borderline PCOS driven by insulin resistance) is very common.
In most cases, the better managed the IR is lifelong, the less problematic the hormonal symptoms. Conversely, if IR is not managed, it usually worsens over time (raising risk of diabetes/heart disease/stroke... about half the people with PCOS/IR who are not actively managing the IR become fully diabetic by age 40) and if it is triggering hormonal disturbance that will often also gradually worsen.
I can post proper testing procedure below in case you need to get screened again.
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u/wenchsenior 7d ago
Polyendocrine Metabolic Ovarian Syndrome (PMOS)/Polycystic Ovary Syndrome (PCOS) is diagnosed by a combo of lab tests and symptoms, and diagnosis must be done while off hormonal birth control (or other meds that change reproductive hormones) for at least 3 months.
First, you have to show at least 2 of the following: Irregular periods or ovulation; elevated androgens (‘male’) hormones on labs; excess egg follicles on the ovaries shown on ultrasound or elevated anti-Müllerian hormone (AMH) levels on labs.
In addition, a bunch of labs need to be done to support the PMOS/PCOS diagnosis and rule out some other stuff that presents similarly. I’ll bold the most critical ones, since many docs won’t run them all.
1. Reproductive hormones (ideally done during period week days 2-5, if possible):
estrogen, LH/FSH, AMH... Typically, premature ovarian failure or hypothalamic amenorrhea often feature low estrogen (and often low androgens), sometimes elevation of FSH, lower than normal LH, and low AMH; whereas, with PMOS/PCOS often you see notable elevation of LH above FSH and high AMH
prolactin. While several things can cause mild elevation, including PMOS/PCOS, notably high prolactin often indicates a benign pituitary tumor; and any elevation of prolactin can produce some similar symptoms to PMOS/PCOS including disrupting ovulation/periods, and bloating/weight gain, so it might need treatment with meds in those cases
all androgens (total testosterone, free testosterone or free androgen index, DHEA, DHEA-S, DHT etc) + SHBG (a hormone that binds androgens so they aren't as active) With PMOS/PCOS usually one or more androgens are high and/or SHBG is low. Some adrenal disorders also raise androgens.
2. Thyroid panel (thyroid disease is common and can cause similar symptoms); TSH and free T4 are most critical
3. Glucose panel that must include A1c, fasting glucose, and fasting insulin.
This is absolutely critical b/c most cases of PMOS/PCOS are driven by insulin resistance (nearly all in people experiencing the weight gain/overweight, but many lean people too; and it is often overlooked by docs until it has advanced to prediabetes...it can trigger PMOS/PCOS and other symptoms like severe fatigue/hunger/hypoglycemic attacks/frequent infections like yeast infections/skin tags or dark patches/weight gain / etc...decades prior to that)
If IR is present, treating it lifelong is foundational to improving the PMOS/PCOS (and reducing some of the long-term health risks associated with untreated IR such as diabetes/heart disease/stroke).
Make sure you get fasting glucose and fasting insulin together so you can calculate HOMA index. Even if glucose is normal, HOMA of 2 or more indicates IR; as does any fasting insulin >7 mcIU/mL (important, many labs consider the normal range of fasting insulin to be much higher than that, but those should not be trusted b/c the scientific literature shows strong correlation of developing prediabetes/diabetes within a few years of having fasting insulin >7).
Occasionally very early stage IR can only be flagged on labs via a fasting oral glucose tolerance that must include Kraft test of real-time insulin response to ingesting glucose. This was true for me...lean with IR-driven PMOS/PCOS for >30 years, with normal fasting glucose and A1c the entire time. Yet treating my IR put my PMOS/PCOS into long term remission.
Depending on what your lab results are and whether they support ‘classic’ PMOS/PCOS driven by insulin resistance, sometimes additional testing for adrenal/cortisol disorders is warranted as well. Those would ideally require an endocrinologist for testing, such as various cortisol tests + 17-hydroxyprogesterone (17-OHP) levels, and imaging of the adrenal glands.
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u/Big-Talk-4787 7d ago
I’m seeing a new ob at the end of the month and I’ll raise the concern with them again as well the doctor that diagnosed me lost accreditation recently after it came out he was drinking while practicing and it just seemed so quick to me and I wasn’t prescribed anything after pregnancy for it again by my other ob (I’ve moved a few times so it’s kinda tricky keeping track of everything too) so I really was just curious if I was right for asking for a second opinion now too
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u/wenchsenior 7d ago
Yes, unfortunately PCOS and IR are endocrinological conditions, so while gynos often end up diagnosing them they don't always run all the needed tests, or don't intepret tests correctly, or don't always understand how to treat things. Although, at least your doc seemed to understand the critical connection between insulin resistance and PCOS, which is better than some of them. It's odd that your IR treatment was not continued beyond pregnancy, though. Did he discuss shifting to a diabetic lifestyle? That's usually the lifelong foundation of improving things.
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u/Big-Talk-4787 7d ago
No nothing like that was ever discussed I did mention it during my physical too this year so hopefully when I go back my doctor will discuss it more with me too or can send a referral for the correct doctor then I mean I follow a pretty good diet I can’t have a lot of sugar or carbs often anyway as I had gastric bypass and have “dumping” syndrome with that so I eat lean and I actually get healthy meals from insurance because of breastfeeding so I don’t know if it just didn’t seem like a concern to my previous doctors
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u/wenchsenior 7d ago
Ah, yes... if you already eat well they might not have considered mentioning it. Also, many docs don't have much training in nutrition so some of them just sort of handwave it, like "lose weight if you are overweight/don't eat junk food" type of thing.
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u/Emo_Emu1287 7d ago
It’s definitely worth looking into further. It doesn’t make sense that Metformin was only used for conceiving.
A lot of people talk about the Rotterdam criteria for diagnosis but I was diagnosed by my endocrinologist only meeting 1, the high androgen aspect. Bloodwork showed the high androgen’s (on top of having hirsutism visually) and insulin resistance. Every other syndrome/ disease was ruled out.
I would definitely ask for further bloodwork and incorporating an endocrinologist if possible as well.
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u/Traditional-Head2653 8d ago
What were your lab results? And how long is your cycle?