Pointless frustration-rant-confusion

ravenstar25
ravenstar25 Posts: 126 Member
Got more labwork back from my doctor, same as it's always been forever. Ultrasounds on my ovaries show classic PCOS cysts (surrounded by small ones with occasional big ones, ouch) , I have most of the other outer symptoms, hirsutism, midline weight gain and frustrating inability to lose, carb/sugar cravings, migraines, bad skin, irregular cycles, you name it.
But I have zero of the blood work that would show any of the underlying "true causes" of this. No elevated FSH, LH, Androgens. No thyroid trouble. No insulin resistance detected. A1C only very borderline high and only after they lowered the guidelines a few years ago. Cholesterol normal, triglycerides under 100! Maybe because for years I've been picking at tiny meals and I still look like a whale. A WHALE *sigh*

Replies

  • Alliwan
    Alliwan Posts: 1,262 Member
    What WOE are you on?

    I know for many the LCHF has helped so very much with the cravings and they've actually been able to eat more calories than on a normal SAD WOE and still lost weight.

    Just a thought.
  • KnitOrMiss
    KnitOrMiss Posts: 10,104 Member
    Got more labwork back from my doctor, same as it's always been forever. Ultrasounds on my ovaries show classic PCOS cysts (surrounded by small ones with occasional big ones, ouch) , I have most of the other outer symptoms, hirsutism, midline weight gain and frustrating inability to lose, carb/sugar cravings, migraines, bad skin, irregular cycles, you name it.
    But I have zero of the blood work that would show any of the underlying "true causes" of this. No elevated FSH, LH, Androgens. No thyroid trouble. No insulin resistance detected. A1C only very borderline high and only after they lowered the guidelines a few years ago. Cholesterol normal, triglycerides under 100! Maybe because for years I've been picking at tiny meals and I still look like a whale. A WHALE *sigh*

    @ravenstar25 Please remember that just because your ranges are in the normal range for those tests does not indicated a lack of issue. My Insulin was between 9 & 7 on the fasting scale, and yet my endocrinologist says I have every sign of being insulin resistant. 19.6 is the limit on my lab's report.

    My thyroid stimulating hormone and my T4 levels have been high in the past, but it was the imbalances between my hormone, T4, and T3 leves that told my doctor something was really wrong. One form wasn't converting to the other, and my levels were only "in range" with meds. It is crazy...in some things I'm in the lowest ranges, other things in the highest, and yet others right in the middle. You would think if the problem was consistent, they would all line up, but they don't.

    My Vitamin D3 is always really low - even with supplements. That affects so much for us women! So please just remember context...just because those ranges exist does not mean they are the ranges for you. I'm going to hunt around and see if I can find modified PCOS ranges...so it is more accurate to me than to The Rock or someone...
  • ravenstar25
    ravenstar25 Posts: 126 Member
    idk what a WOE or a SAD WOE is, heh
  • ravenstar25
    ravenstar25 Posts: 126 Member
    Yeah I have super low Vitamin D levels and have to take supplements.
  • Dragonwolf
    Dragonwolf Posts: 5,614 Member
    SAD = Standard American Diet
    WOE = Way Of Eating
  • leahraskie
    leahraskie Posts: 260 Member
    Got more labwork back from my doctor, same as it's always been forever. Ultrasounds on my ovaries show classic PCOS cysts (surrounded by small ones with occasional big ones, ouch) , I have most of the other outer symptoms, hirsutism, midline weight gain and frustrating inability to lose, carb/sugar cravings, migraines, bad skin, irregular cycles, you name it.
    But I have zero of the blood work that would show any of the underlying "true causes" of this. No elevated FSH, LH, Androgens. No thyroid trouble. No insulin resistance detected. A1C only very borderline high and only after they lowered the guidelines a few years ago. Cholesterol normal, triglycerides under 100! Maybe because for years I've been picking at tiny meals and I still look like a whale. A WHALE *sigh*

    If you have ovarian cysts with hirsutism (which is usually caused by increased testosterone or decreased estrogen) that is often enough to make a diagnosis of PCOS, you only need like 2 of the symptoms.

    I had increased testosterone along with those so they put me on birth control with only that information. No other issues, I wasn't really overweight, no insulin resistance, probably normal cholesterol, no thyroid problems. Perhaps you need to speak with another doctor to get a second opinion...
  • ravenstar25
    ravenstar25 Posts: 126 Member
    She is not changing my PCOS dx, I'm just confused about it when I read all these things that are supposedly associated with it bloodwork wise that I don't have.

    I've had more protein and less carbs in my diet in recent years, although I can't hack a real ketogenic diet, it makes me feel sick.
  • KnitOrMiss
    KnitOrMiss Posts: 10,104 Member
    She is not changing my PCOS dx, I'm just confused about it when I read all these things that are supposedly associated with it bloodwork wise that I don't have.

    I've had more protein and less carbs in my diet in recent years, although I can't hack a real ketogenic diet, it makes me feel sick.

    As long as you're in the 50-100 grams of carbs a day range, you're considered low carb, which helps this condition immensely, even more so if most of that is from veggies - and little or none from sugar. As far as your way of eating, just keep tweaking...you will find what works for you! @Dragonwolf just posted and excellent writing about the hell she has had in diagnosis, treatment, weight loss, and regaining of health... It makes for an excellent read if you haven't already seen it.

    Because PCOS is a disorder, it is a collection of symptoms. You can have 1 factor or you can have 100 factors. No two results are exactly the same. No two people suffer it exactly the same. Read the parts that apply to what you know, and what your SYMPTOMS says - no the bloodwork. So many medical folks read the blood results individually instead of considering them as a network...

    Do you know what your fasting insulin rate is? I was told that even though my level of 7.1 is well within the normal range that it indicates I am insulin resistant when considered with other factors... And not every "condition" shows up in bloodwork. Your original list of complaints indicates metabolic disorder, at the least.

    I'm not saying there are any set answers, but since you have the cysts, you have this disorder. You may not develop more symptoms as time goes on, or you may not.

    Sending you good thoughts and hugs...
  • jamielynnmobile
    jamielynnmobile Posts: 68 Member
    Wow @ravenstar25, I am in *exactly* the same boat. I have ALL of the same PCOS symptoms that you described, and I have medical records going back 15 years (to my teens) showing ultrasounds of multiple instances of cysts (which are getting more 'complex' and have ruptured at least once), yet my current doctor refuses to give me a PCOS diagnosis because my hormone levels on the ONE bloodwork she ordered were within normal range. My D levels were found to be low; she has me taking 2000 IU basically for the rest of my life, she said. My fasting insulin is fine, BUT I have reactive hypoglycemia (she *did* diagnose that!), which means once I eat, the rollercoaster of crazy begins. I have to eat every 2-4 hours.

    I really have no advice, because I haven't gotten anywhere with it either. It's just nice to know that I am not the only one whose doctor is so uncooperative with, what seems to me, to be a pretty clear diagnosis.
  • KnitOrMiss
    KnitOrMiss Posts: 10,104 Member
    edited May 2015
    Wow @ravenstar25, I am in *exactly* the same boat. I have ALL of the same PCOS symptoms that you described, and I have medical records going back 15 years (to my teens) showing ultrasounds of multiple instances of cysts (which are getting more 'complex' and have ruptured at least once), yet my current doctor refuses to give me a PCOS diagnosis because my hormone levels on the ONE bloodwork she ordered were within normal range. My D levels were found to be low; she has me taking 2000 IU basically for the rest of my life, she said. My fasting insulin is fine, BUT I have reactive hypoglycemia (she *did* diagnose that!), which means once I eat, the rollercoaster of crazy begins. I have to eat every 2-4 hours.

    I really have no advice, because I haven't gotten anywhere with it either. It's just nice to know that I am not the only one whose doctor is so uncooperative with, what seems to me, to be a pretty clear diagnosis.

    For that "reactive hypoglycemia" that is more likely insulin resistance, though I obviously can't know that without further bloodwork, try lowering your carbs slowly while raising your fats... It will balance out and give your body other fuel. Fat fuel burns slower longer, so the crashes should get further apart... I have a friend doing this very thing right now, and she already said that the hard crashes, shakes, moodiness, and all that business has mostly slowed if not stopped... She's loving it.

    And just because your number is in range does not mean you're not insulin resistant. The range goes up to like 20 or some (for normal/okay), my number is a 7.1, and in context with other numbers, and that is without medication (it dropped from 9 in the past year), I AM insulin resistant. So any doc who doesn't consider the entire map isn't the doc you need...

    And since PCOS is a SYNDROME - there is a whole gambit of tests that should be run. Get a referral to an endocrinologist ASAP. I don't know any PCP's who can treat PCOS properly without suffering it themselves...