Doctor didn't listen to me at all...

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knelson095
knelson095 Posts: 254 Member
Hello ladies! I apologize in advance for this very long post. I'm very frustrated at the moment and this will probably devolve a bit into a rant.
A little bit of history: I have had messed up periods forever, since my first one. Heavy bleeding for 6-7 days and irregular timing. Long stretches with nothing at all, then when I finally had one it would be horrible. Went to the dr six years ago (@19yo) and she couldn't diagnose me officially (only a NP) but she thought from my blood work that I had pcos. I didn't get a referral as I had no insurance and that round of visits alone cost me $700+. So she put me on clomid to force a cycle and then birth control. Was on that for 1.5 years or so, but went off of it because it was horrible. She told me it would probably help my weight and my acne, but it actually made both worse. I was starving all the time, my sex drive went down the toilet and my skin was worse than it had ever been. So husband and I spent a few years using condoms (just in case, not like I thought I could get pregnant anyway), and basically ignoring my symptoms because I couldn't afford to have anything checked. Last year I decided to start trying to get healthy as we want to start a family, so I lost weight (60lbs so far), my periods came back (still a little irregular, 35-40 day cycles and I skipped July completely), I quit smoking, etc.

So last week I finally went to get a check up. My husband joined the military, so I have Tricare Prime insurance now and I thought I had better make use of it. Hubby and I have been having unprotected sex for over a year now and no results yet in the baby department, so I figured I would go and get my hormones checked and figure out from there. I am still not completely convinced on the pcos diagnosis, I don't have the cysts or the insulin resistance, just extra hair and irregular periods. My testosterone levels were at 60, which from what I've read is high but not as bad as some. Regardless, I wanted them checked now to see if they had improved with weightloss and by quitting smoking. And it turned out to be a giant waste of my time.

I went and had the consult, told the dr, my pcm, of my irregular periods and that we were trying. Told her I wanted to get my hormones checked to make sure all was in order, so I don't waste my time tracking and thinking that I might get pregnant, wasting money on pregnancy tests when I'm late, etc. I told her I needed to know if the diagnosis of pcos was accurate, so I could be referred to a specialist. She gave me a script for prenatal vitamins and sent me on my way. They took my blood to test (the lady stuck that needle in like she was throwing darts I swear. Ouch) and I went back yesterday for the results and a pelvic exam.
I get there and they had me fill out my history, again. Same nurse, acted like we had never met before. She called my name and saw me walk up to her. When I got to her she huffed and was still scanning the waiting room, she called my name again...I was like, yeah I am right here? ...anyway. She takes me back and takes my vitals and has me put on the stupid paper gown and left me to wait. Twenty minutes later, I'm still sitting there naked and freezing and the dr finally comes in. She introduces herself (really?), looks at my intake form and says, you're not on BC? Do you want a prescription for some?
Wtf? No, I told you last week I am trying to get pregnant. I asked her about the results of my blood work and she had to go find it...she comes back and goes through it with me, they didn't test my hormones. Ffs. I ask her why my hormones weren't checked and she says, we did, I told you your thyroids fine. I said I asked that my estrogen, testosterone and progesterone be tested and she told me that they were unimportant because I was already diagnosed with pcos, so those levels don't matter. Ok...then she asked me if I was taking prenatals...yeah, you gave me a script last week. But hey, now I know I don't have syphilis. Which she spelled wrong on my blood work results.

We get on with the pelvic exam (during which she asked me how my periods are, again) and when that's over I ask her for a referral to a fertility dr. She says no, I can't refer you until your husband gets his sperm checked, and why are you worried about it anyway? You have to have been trying and failing for awhile first. I remind her that we have been having unprotected sex for over a year. She goes on to explain that he has to have been home and us trying for an entire year before they will test him, then explains how that works, with the cup and everything, like she thinks I'm a freaking moron. So in order for me to find out anything, he has to go get tested, get the results (which I'm sure will be perfectly fine, he's a healthy 25 yo man that has never smoked, done drugs or anything and has no family history of fertility issues), then I have to go back and make another appt with these morons just so I can get a freaking referral to someone that actually knows what the *kitten* they are doing and has a memory better than that of a goldfish.

Then to top it off I told her I'm pretty sure it is me not him and she goes, oh honey I'm sure it's not you, it's probably him. Like I was just being dramatic and needed reassurance. Gah! I wanted to scream at her by the time it was over.

I just cannot believe that this is the best they have for our military and their families. I live near one of the largest military bases in the country, and this clinic is one of the main places for active duty to come for healthcare. It's a freaking disgrace. They are dismissive and just want to get you in and out and collect their pay check. I'm working on switching to the standard insurance, I would rather pay more and have them actually listen to me than have to go deal with those people again.

Anyway, do any of you have any advice on what I need to do? What kinds of drs I need to see, what tests, etc? I'm sorry again for the long post, I just really want to conceive and this is already getting frustrating and I've barely even started.
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Replies

  • KnitOrMiss
    KnitOrMiss Posts: 10,104 Member
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    I wish I had answers.

    You can pay out of pocket for your own tests, but it is pricey. stopthethyroidmadness.com has labs listed at the bottom of the page about thyroid stuff. If they only tested your TSH, that doesn't tell you about your darned thyroid anyway. There are often many bundles available from these and other sites you can get "packages" done. PCOS Diva's site may have some lab links, too, I don't recall.

    Regardless, there are many labs you can just pay to have your testing done.

    I'd look at healthfulpursuit.com for information in general about restoring hormones.

    Scream and vent here all you need, hon... I've only dealt with Tri_Care through in-laws and such, but I understand the frustration. I'm sorry those folks were idiots and treated you unfairly. I hope you get better treatment in the future...

    Sending tons of hugs.
  • knelson095
    knelson095 Posts: 254 Member
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    Regarding thyroid they tested t4 free and tsh plus triiodothyronine, whatever that is. Both were normal. I've never really been concerned about my thyroid.

    Thank you for your kind words. :smile:
  • KnitOrMiss
    KnitOrMiss Posts: 10,104 Member
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    Triiodothyronine is T3. They should have tested Total and free on T4, and on T3 they should test Free and Reverse.

    But, if you are not concerned too much, you might be okay.

    As far as PCOS, if you have a single symptom on that list, you might have it. Many folks don't even have the main symptoms you listed, but I can tell you from experience that if you got that heavy and it took you that much effort to lose the weight you have, it is very likely you have some level of insulin resistance, even if it doesn't show up on tests (fasting insulin is the only one right now, and insulin is such a dynamic, reactive number, it's hard to get a true measure)...or metabolic syndrome, either of which *can* be attributed to PCOS, also.

    I have an appointment with my endocrinologist tomorrow, so I will be out of the office, not back until Monday, but I'll try to write a better response if others don't beat me to it. (hugs)
  • bluechickens1992
    bluechickens1992 Posts: 1 Member
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    Call around to different fertility doctors. Do some research for your area. Some may not need referrals. You'll probably pay more out of pocket, but it doesn't seem like you're getting anywhere with that doctor.
  • knelson095
    knelson095 Posts: 254 Member
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    My fasted insulin test was in the middle of the normal range with estimated average blood sugar of 100. I know that's probably not the whole story, but that's all I got from them.

    Also, I never had any issue losing weight when I started trying to. I was never taught or shown what a healthy diet looked like was when I was young and have been over weight since grade school. I always just ate too much. I have lost almost exactly what mfp says I will when I eat to my calorie goal. My macros usually fall at the mfp preset of 50c/30f/20p and I've eaten around 1500 calories plus exercise the whole time, and I'm still losing about .75 lbs per week. I am pretty sure I don't have any metabolic issues, but who knows?

    I'm just very disappointed that they didn't do a hormone panel because I was curious to see if the numbers had improved with weightloss, and if they hadn't I'm sure I would have gotten that referral. Plus she made me feel stupid for even asking and it wasn't until I thought about it later that I realized it wasn't me. The vibe I got was that she was irritated that I wanted more when she had just told me my blood work was fine and I am healthy. I know something is still off.
  • KnitOrMiss
    KnitOrMiss Posts: 10,104 Member
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    @knelson095 - I've been told mixed things on insulin... That anything over 7 is worrisome, but also that it is a dynamic number than can swing up or down in response to glucose and stress and other factors, and that as long as glucose isn't elevated, and the number is in range, not to worry about it.

    According to a recent Keto Summit I watched, there were 3-4 hormones related to insulin that we don't even test, and that getting fat (our bodies snatching excess glucose from our bloodstream and storing it away as far) can actually be a protective response to keep blood glucose levels down and safe.

    Additionally, as I've recently discovered, producing a reasonable amount of insulin is CRITICAL to proper thyroid function. So you don't want to drop it too low, either. And yes, if you're losing weight without massive restriction, you may be one of the lucky few who hasn't been beat up by metabolic syndrome yet.

    Losing weight will help with hormonal balance, but so will taking therapeutic doses of inositol and maybe maca root, and possibly including things like Vitex that are said to help restore balance.

    I'm thrilled you realized that the issue wasn't you... And doctors should be happy to have patients not willing to accept the status quo. In reality, it means more money for them with additional tests and such, but perhaps she is one that doesn't like being tested. If she's been in her job a long while or if her practice is overflowing with patients - leaving her no time to dig in with any patient, she could be burned out - or far too used to being treated as all knowing. Way too many factors to know.

    That being said, never quit fighting when you know something's not right. We have to advocate for ourselves and our health. No one else will ever do it as well as we do... Read up, study, and approach the next appointment with the message prior to the appointment that you'll be doing additional tests, at your request.

    But also, keeping a log/diary that shows what you have tracked to date, so you can show her actual data, will help in the diagnosis. She was not incorrect in stating that there are a number of qualifiers that must be met before pursuing infertility care, etc. I can tell you that I thought my ex and I had our bases covered, but in reading all the things ladies/couples have been through here, I SOOOO did not have it covered... LOL. In looking back, I'm thankful things went the way they did, but it wasn't any less stressful as a result.

    Wishing you better luck at the next appointment.
  • JulieSHelms
    JulieSHelms Posts: 821 Member
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    You need a new dr., however you can manage it, get a new one. When I first started having problems I was given such wise advice as: well you don't want any more babies so what difference does it make what your hormones are doing and as I quickly began to bald well they make good wigs these days.
    Your above average testosterone and messed up periods are enough to suspect PCOS, and at least warrant a trip to a dr. who specializes in it (endocrinologist--I learned to stay away from obgyns for this).
    Try to find someone local to you who has PCOS and a healthcare provider they like. If you do facebook, maybe throw out the request there for local friends to comment.
    If you are willing to pay cash for the appt then you don't have to go through referrals. I have found most doctors discount about 50% for paying cash.
    I wasted so many years untreated with more damage happening to my system...
  • knelson095
    knelson095 Posts: 254 Member
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    Thank you everyone. :) I am working on getting disenrolled from Tricare Prime and defaulting back to Tricare standard at the moment. It has a deductable and copays, but I can choose my own doctors. Better than free service that is useless to me. I just have to wait until that all goes through, as I can't afford to pay it all out of pocket currently. I already have a doctor in mind, a fertility specialist. A friend of mine was getting the runaround from doctors for a long time and she finally got a diagnosis of endometriosis from this woman. Now she knows and they are working on helping her relieve her symptoms and get pregnant. I went to her appointment with her and the doc seems very knowledgeable and thorough. I'm looking forward to making that appointment.
    My husband is trying to get me disenrolled, but he is underway at the moment and very busy, not to mention internet service is spotty at sea. So I guess I'll just work on my patience in the meantime. Not my strong suit, lol.

    @KnitOrMiss: You have given me much to consider. I was thinking about it and my family has an extensive history of type 2 diabetes. We all also tend to be overweight, on both sides. My dad used to tell me when I was little and feeling down about my weight that it wasn't my fault, it's just in our genes. I was told forever that for me to lose weight it would be very difficult because of my genes and then later the PCOS, so I never bothered. When I started losing successfully because I actually tried I felt pretty much lied to my whole life. But on the other hand I know I'm going to have to track in some form or another for the rest of my life because of how easy it is to back slide and put it all back, so maybe some people do have a genetic predisposition to hoard body fat stores. The slimmer members of my family have to really work at staying that way. It's that same old argument of nurture over nature and maybe in my case it was a bit of both.

    Part of my inspiration for this lifestyle change was watching my mother try and stave off diabetes with a low carb diet after years of disregarding her health. She's still fighting it now, but I think it might be too late because she's been having more and more symptoms of messed up blood sugar. Extreme low energy and spells of dizziness and blurry vision. I didn't want to wait until I'm middle aged to make my health a priority. I don't want to make my future children (fingers crossed!) worry about me like I do about her, not if I can help it.
  • Sarahb29
    Sarahb29 Posts: 952 Member
    edited October 2016
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    A doctor not checking results you asked for is not appropriate. They should be encouraging you and answering your questions but some tend to get overly defensive and almost insulted when you question them. Blaming your husband for this is also not appropriate, and telling you not to worry because you've "only" lost a year? That's crazy. Every year you wait after 30 increases you and your babies risk of complications - not trying to scare you by any means, but that's the argument I'd be using with my doctor. It's weird that they don't seem to know who you are or what you're in for, you'd think they would at least look at your chart and their own notes before seeing you.

    I'm assuming you're in the US since you're talking about insurance.. have you thought about going to another doctor? I know it's a pain, but you need someone who's going to support you and do the tests you ask for. You're absolutely right to be concerned and in this case it falls into better to be safe than sorry.
  • KnitOrMiss
    KnitOrMiss Posts: 10,104 Member
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    @knelson095 - The only thing I can say about your mom is that she may have to go much lower than she thinks on the carbs to "push back time" on her conditions. To go low carb and fight those things, she must stay moderate and the protein and focus on higher fats. If she isn't doing the higher fats, she's only hurting her organs at this point. Carbs and fats are fuel. Protein is building blocks that can be poorly converted to fuel, but is hard on your kidneys that way. Most folks who try low carb end up failing in some form because they try to stay low fat, too, or they wear out their kidneys and such.

    Also, if she is doing the higher fat and is still having issues, you might look into LADA - which basically is Type 1 diatbetes that developes later in life and gets treated as Type 2, but doesn't respond to prevention or treatments. I've only recently learned about this myself.

    And my mother has autoimmune disorders, diabetes, limited mobility, and all of that. And she is a HUGE part of my motivation, too...

    HUGS and kudos to you for being proactive... It's never too early to fight back.
  • knelson095
    knelson095 Posts: 254 Member
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    Thank you, hugs to you too for taking time out if your day to chat with me! Trying to get my mom on the right track diet-wise has been a struggle. The first time around she thought if she cut out sugar it would be enough, but was eating a family sized bag of chips every two days or so. I kept telling her those definitely are carbs too, but she didn't get it until this last visit where she was told her numbers hadn't improved. Also, her doctor has her on an asinine plan imo, told her to eat <40 grams of carbs per meal and <15 per snack. No definite number per day, and if she means three meals and two snacks that's still 160/day. Seems high to me, since she's very short and only lightly active so her maintenance calories are only around 1700, tops. I have been trying to get her to make an account here but she won't. She lives with my sister, who is quite knowledgeable about low carb as she has done atkins successfully before, and she's making her crazy because she won't listen. It probably won't be long before she has to take meds for it. Seems inevitable with her attitude being like it has been so far.
  • KnitOrMiss
    KnitOrMiss Posts: 10,104 Member
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    That is too high. That's the old school belief. If you've any interest in reading for yourself, there's a group many of us who trying to intentionally restrict any form of carb - all the way down through carnivore (also casually called zero carb, but not literally ZERO)....

    http://community.myfitnesspal.com/en/group/394-low-carber-daily-forum-the-lcd-group

    There are some good threads in there for diabetics. One of my favorites that's a little long but has a veritable TON of information was something about the Darwin Awards for outdated diabetic advice. The group is private now, so you do have to join to read, but here is the link to the specific post, if you choose to go read.

    http://community.myfitnesspal.com/en/discussion/10346123/official-diabetes-diet-misinformation-any-candidates-for-the-darwin-awards/p1

    And my mother won't even try anything I've suggested, though she keeps reading more info I send, and then says it's impossible. Sadly, my stepfather had a mild heart attack and got the formal T2D diagnosis as well, so maybe now that it's both of them, they'll try? I just know I can't fix things for her, so all I do is send the information, and I've told her any number of times that I'll stop if it bothers her. I just keep hoping something clicks. One of my favorite parts of that specific post was a friend who posted the differences between how we treat cats with diabetes versus humans. The differences are SHOCKING. We don't blame cats, we work on getting them low carb, etc. With humans, obviously they lie about what they eat, it's all their fault, and we keep issuing carb requirements like you listed above that just make them SICKER... I'd rather be the cat in this scenario, frankly.

    Best of luck on your continued research!
  • knelson095
    knelson095 Posts: 254 Member
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    I might check that out. I talked to my mom today and told her I thought that her drs carb limit seemed too high and she did agree with me. My sister is helping her a lot...but then again I was talking to her the other day and she told me that diet soda isn't any better for you than regular and it's the carbonation that makes you gain weight because your body can't process carbonation so it stores it as fat... :neutral:

    It's like the blind leading the blind. I will just do as you do and keep providing her with information and hope she finally understands.
  • KnitOrMiss
    KnitOrMiss Posts: 10,104 Member
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    @knelson095

    Well, your sister is partially right. Diet soda isn't good for you - but it isn't the carbonation that is the issue. It is the artificial sweeteners that really mess with most people - and then the added chemicals for preservatives or color, etc. Artificial sweeteners can cause inflammation, allergic reaction, insulin reactions, sugar cravings, headaches, and so many other issues.

    About the only ones I've found that don't cause me much issues are SweetLeaf Brand Sweet Drops (Stevia)...the odd blend they use in Zevia drinks, and the generic liquid form of sucralose from Walmart. Sucralose is not gut friendly though, and so I could have been having silent reactions at that time. The majority (but not all) powdered sweeteners use fillers of some kind - any like maltodextrin or dextrose actually have a higher insulin/glycemic reaction than sugar. Inulin is a natural fiber type filler that tends to be okay. It really takes some investigation to know what's out there and what works for you and what doesn't.

    My theory though is that if they are something that help you adhere to an overall healthier plan, they are a tool to be utilized sparingly. But, when you hit that wall, as inevitably happens to us all, they should be something you do a trial elimination of to see if they're causing more of an issue than we realize, etc.

    Oh, and just for a fun tidbit, I have as much reaction to the dyes in things as I do AS, personally. Red Dye #40 and I are mortal enemies!!!

    It sounds like your sister is at least trying, just that she may not have the best resources.

    It also sounds like your mother is thinking, even if she doesn't want to embrace the full truth just yet.
  • KnitOrMiss
    KnitOrMiss Posts: 10,104 Member
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    Okay, I should amend that to say that carbonation isn't the only issue. Some people don't handle it well. I'm one of them. And honestly, I don't know the whys of that, but I can tell you that there is a huge difference in how I personally process natural carbonation from fermentation (like in Kombucha) versus in a traditional soda...
  • knelson095
    knelson095 Posts: 254 Member
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    Oh no I get that diet soda isn't good for everyone. I personally don't have any issues drinking it, but I know that's not the case for everyone. I usually don't have anymore than one can a day, tops. But she wasn't referring to secondary reactions from artificial sweeteners, just the carbonation. It was kind of funny because as she was telling me she kind of paused as if she realized what she was saying was asinine, but doubled down on it out of pure stubbornness.

    I'm not saying people don't react badly to carbonation, just that ingesting it cannot make you gain fat. But I can see how it's possible that AS can screw up some people's hormones and make their systems go haywire. My sister actually used to have a mild anaphylactic reaction to aspartame when she was younger, but it has calmed down in recent years. It's really hard to avoid as they put it in anything, cough syrups, toothpaste, most gum, etc.

    I use the generic liquid sucralose in my coffee. I was using the powder for awhile but the liquid is much better imo. It bugs me that they say the powder is 0 calorie when it's not.
  • Fayga
    Fayga Posts: 13 Member
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    How completely frustrating for you! I'm so sorry you had those bad experiences with that dr and staff.
    In my research of PCOS, I've found it can manifest SO many different ways... and as long as you have 3 symptoms out of a very long list, the doctors will diagnose you. Have you tried Metformin yet? I suggested this to my friend who was also have fertility issues and she ended up getting pregnant 3 months after starting metformin.
    I am in no way wanting to give you false hope or medical advice through this forum. Only ideas on which to speak to a doctor about, once you find a different doctor that you like of course.
    Wishing you only blessing!
  • madambutterfly91
    madambutterfly91 Posts: 31 Member
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    I wish I could say that its better outside of the military treatment but I have had drs that bad and even worse. I went in to get a fasting glucose test run and I was told to go in fasting and then when I showed up they told me they couldn't run those tests and got mad at me for showing up fasting cause they wanted to run blood work they hadn't mentioned. I hate drs because of the countless situations like this. conceptually I prefer to have female doctors but when it comes to my first hand experiences I have to go with the males cause I have had them actually listen and address what I am actually talking about instead of just answering the question they were expecting to hear. the last dr apt I went to months ago they still never called in the script she tried to convince me I would stroke out if I got pregnant without (not that I bought it since I am in the best condition that I've been in and never heard that from my specialist) ive called back multiple times and never gotten a call back. I know their office does really well for those of my friends that are pregnant but for Whatever reason I just got brushed under the rug once again. I really wish I haddnt moved away from my last dr. I have been seriously considering making the couple hour drive to just go back to my old dr. im hoping the finances will allow me to make another dr visit soon to actually get treatment.
  • Dragonwolf
    Dragonwolf Posts: 5,600 Member
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    I wish I could say that its better outside of the military treatment but I have had drs that bad and even worse. I went in to get a fasting glucose test run and I was told to go in fasting and then when I showed up they told me they couldn't run those tests and got mad at me for showing up fasting cause they wanted to run blood work they hadn't mentioned. I hate drs because of the countless situations like this. conceptually I prefer to have female doctors but when it comes to my first hand experiences I have to go with the males cause I have had them actually listen and address what I am actually talking about instead of just answering the question they were expecting to hear. the last dr apt I went to months ago they still never called in the script she tried to convince me I would stroke out if I got pregnant without (not that I bought it since I am in the best condition that I've been in and never heard that from my specialist) ive called back multiple times and never gotten a call back. I know their office does really well for those of my friends that are pregnant but for Whatever reason I just got brushed under the rug once again. I really wish I haddnt moved away from my last dr. I have been seriously considering making the couple hour drive to just go back to my old dr. im hoping the finances will allow me to make another dr visit soon to actually get treatment.

    Sounds like you got an ob/gyn that spends most of their attention on pregnancy. I had that, too. It was because I was trying to get pregnant that I got my PCOS diagnosis. I went back in a few years later with the exact same situation (except not trying to get pregnant), to the doctor that diagnosed me, and was met with a shrug and "try Weight Watchers." WTF?!
  • Sarahb29
    Sarahb29 Posts: 952 Member
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    If they are not testing you for what you specifically ask for, you can do this yourself by ordering blood tests online (for example). I'd do that as a last resort but it sounds like you already know what you want to screen for and what numbers you're interested in.