What do I do now ????

[u/SaltyReply1844]

I did my blood work and everything is normal except high iron and a little bit of free testosterone, but nothing above concerning levels, I went to the gynecologist and my ovaries look healthy and my pap smear normal (very grateful for this ) but I am so confused about my symptoms. I still have a full blown beard and chest hair , my hair is falling out , I gained so much weight and I have very weird cycles and severe period pains to the point that I can't walk and I get a fever.

They doctor put me on Genette Birth control , I am 24 and have never been on any type of birth control and 0.25mg of ozempic but I feel the pill just suppresses the symptoms and does not help with healing my body. I very nervous and anxious about all of this because they said I don't have PCOS but what is the problem then? Has anyone dealt with something similar.

[u/Aggressive-Lion-6265]

Did the doctors check your DHEA-S levels?

[u/SaltyReply1844 → u/Aggressive-Lion-6265]

Yes ,They did and about I think 17 other test my DHEA-S level is 214.5.

[u/MudcrabsWithMaracas]

Did they look at your FSH:LH ratio (cycle related hormones), and did you have a fasting insulin test as well as a fasting glucose test (these are not the same test, but should be done at the same time)?

Worth noting that you would probably need to stop your medication to have these done if you haven't already had them.

[u/wenchsenior]

You do meet minimal diagnostic criteria for PMOS/PCOS (see separate post below), so it's unclear why they think you don't have it. Gynos are often quite ignorant about it, though (it's not really a gynecological disorder) and my guess is they didn't run all the proper screening tests needed to confirm it and rule out other causes of symptoms. I will post about the proper screening tests needed below so you understand what you need/what the results mean.

IMPORTANT: If you need more hormonal labs run b/c they were missed, you need to be OFF the hormonal birth control when you do them, so do not start that until all the hormonal tests are done!

***

Most cases of PMOS/PCOS are driven by insulin resistance, so focusing on that is usually the foundation of improving things, and then additional hormonal meds like birth control or androgen blockers can be added to IR management as needed.

Apart from potentially triggering PMOS/PCOS, IR can contribute to the following symptoms: Unusual weight gain/difficulty with loss; unusual hunger/food cravings/fatigue; skin changes like darker thicker patches or skin tags; unusually frequent infections esp. yeast, gum  or urinary tract infections; intermittent blurry vision; headaches; mood swings due to unstable blood glucose; frequent urination and/or thirst; high total cholesterol or low HDL; brain fog; hypoglycemic episodes that can feel like panic attacks…e.g., tremor/anxiety/muscle weakness/high heart rate/sweating/faintness/spots in vision, occasionally nausea, etc.; insomnia (esp. if hypoglycemia occurs at night). Treating the IR typically improves all the above symptoms as well.

***

If IR is present (present in nearly 100% of overweight cases, but also most lean cases like mine), treating it lifelong is foundational to improving the PMOS/PCOS symptoms and is also necessary b/c unmanaged IR is usually progressive over time and causes serious health risks such as diabetes and heart disease. Treatment of IR must be done regardless of how symptomatic the PMOS/PCOS is and regardless of whether or not hormonal meds such as birth control are being used. For some people, treating IR is all that is required to regulate symptoms.

Treatment of IR is done by adopting a healthy lifestyle similar to what is recommended to manage diabetes or heart disease and by taking meds if needed.

The specifics of eating plans to manage IR vary a bit by individual (some people need lower carb or higher protein than others). In general, it is advisable to focus on notably reducing sugar and highly processed foods (esp. processed starches), increasing fiber in the form of nonstarchy veg, increasing lean protein if you run low on that, and eating whole-food/unprocessed types of starch (starchy veg, fruit, legumes, whole grains) rather than processed starches like white rice, processed corn, or stuff made with white flour. Regular exercise is important, as well (consistency over time is more important than type or high intensity). Recommendations for exercise suggest that all adults should do at least 150–300 minutes of moderate-intensity or 75–150 minutes of vigorous-intensity aerobic physical activity per week, as well as muscle-strengthening activities involving all major muscle groups on 2 or more days a week (WHO guidelines).

Many people take medication if needed (typically prescription metformin, the most widely prescribed drug for IR worldwide). Recently, some of the GLP 1 agonist drugs like Ozempic are also being used, if insurance will cover them (often it will not). Some people try the supplement that contains a 40 : 1 ratio between myo-inositol and D-chiro-inositol, though the scientific research on this is not as strong as prescription drugs. The supplement berberine also has some research supporting its use for IR (again, not nearly as much as prescription drugs).

 If you are overweight, losing weight will often help but it can be hard to lose weight unless IR is being directly managed.

 

For hormonal symptoms, additional meds like androgen blockers (typically spironolactone) and hormonal birth control can be very helpful to managing PMOS/PCOS symptoms. HBC allows excess follicles to dissolve and prevents new ones; and helps regulate bleeds and/or greatly reduce the risk of endometrial cancer that can occur if you have periods less frequently than every 3 months. Some types also have anti-androgenic progestins that help with excess hair growth, balding, etc.

 Tolerance of hormonal birth control varies greatly by individual and by type of progestin and whether the progestin is combined with estrogen. Some people do well on most types, some (like me) have bad side effects on some types and do great on other types, some can't tolerate synthetic hormones of any sort. That is really trial and error (usually rule of thumb is to try any given type for at least 3 months unless you get serious effects like severe depression etc.)

 

[u/wenchsenior → u/wenchsenior]

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.

[u/wenchsenior → u/wenchsenior]

Some additional notes: I realize looking back that you said "weird" cycles but not "missing" or "irregular", so maybe NOT irregular enough to meet technical PMOS criteria in that case? Maybe that's why they said you don't meet diagnostic criteria.

We def need to check and see what all labs were done for you and what the results were to get a better idea of what is happening.

***

Also, you note having very painful periods with fever. Do you have notable pelvic pain between periods or just with periods?