New! Determined! Angry! (That's the testosterone)
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Oh my god, I would have possibly went off on him, or worse; let my mom go off on him. Those symptoms sound exactly what I'm going through right now including the hair falling out.
I absolutely hate that, the morbidly obese thing. That was one thing they kept harping on that I need to lose weight. They automatically assumed I wasn't actively trying. And I have, like, literally since joining up and talking with you guys. Mostly through sheer force of will because I'm managing around 1200-1500 calories and trying not to grab extra bananas or coffees trying to stay awake.
I've found a private endo who will see me, although he actually is in London and it's a bit expensive, but there's that fall back for after the GP appointment on the 4th. I just back from camping with my troop and was COMPLETELY exhausted the whole time and it wasn't just the kids in the next tent talking all night, there were points I felt like laying my head on the craft table I was heading and falling asleep. I think there were fluorescent bulbs in the lighting, because I'd start to feel better after getting out of that building. Does anyone else get that? Super extreme tiredness while you're under fluorescent lighting? My toes are a bit numb, too.
It's funny you mention the high carb/low fat thing, people elsewhere in the forums seem to be pushing that keto is just a fad and does nothing contrary to evidence.
Thanks! I think I'll need them. We've definitely had to advocate before for my sister. It feels weird that I have to for myself.0 -
The fluorescent light stuff is probably more adrenal if I remember correctly...and the super tired all the time can be both. Because there is so much overlap between the two, it literally takes a number of blood tests sometimes to get to the root of it...
I spend 8-10 hours a day underneath fluorescent lights, but I do have a daylight lamp I use sometimes...but the whole D3/K2, magnesium, zinc, boron, Vitamin A (12 hours offset) really helped get me back on my feet in that regard.
I simply cannot fathom that your GP, upon hearing you're tired regularly, didn't do a D test.... Like WHAT? Super easy/cheap test, super easy/cheap fix.... UGH.
And yes, I get tired of "your weight is the cause of all your symptoms." Nope, the symptoms came first, then then weight, then the symptoms got worse. The weight - and freaking inability to lose it - IS A SYMPTOM.... UGH.
We have to be our own best advocates, @aresvallis
Good luck as you continue on...don't lose hope, come back here and vent, ask questions, share what you learn, etc.
I will say though that starting on Metformin SUPER SLOWLY and ramping up SUPER SLOWLY stopped all the diarrhea side effects - and legit helped both my hunger, the rampant weight gain, and tolerance of foods. Before I thought I was going to die taking it....0 -
I think he was more concerned with the A1C I requested, and the rest of the function tests were extra. I'm going to see him in a couple weeks so I'll be requesting a vitamin B12 shot and a D and iron panel.
I remember when my mom was on metformin, (and as she's a nurse, she followed the directions religiously) she started having the diarrhea so bad she was doing it almost constantly, and it kept stinking the whole house up. My sister and I were about ready to kick her out of the house it was so stink, unless she stopped and went back to her doctor. The other side effect was she would pass out after taking a pill, wake up half an hour before she was due, then passed out after taking that one. So she was sleeping all the time.
We had a long talk last night actually, and I told her about the mother-daughter link with PCOS and she went "oh bleep" so I have a feeling she might ask at her next appointment if she's got it.
Mom used to say that fluorescence would sap one of the vitamins out of you, either a D or K. People who work under fluorescence would often test low for it, and at one point all our bulbs were fluorescence. My sister tested low on that vitamin even though she had supplements, and our mother ripped all the fluorescence out of the house. Sister tested much higher within a few weeks after that, without upping her supplement.
A while back I was taking vitamin supplements and I felt a bit better in general but I stopped taking them because I thought they weren't helping much, I guess I might start taking them again.0 -
The metformin titration is really relatively new, and not widely known, but nearly everyone who has the issues swears by it:
http://www.mendosa.com/blog/?p=1261
I also did the brand named Glucophage for a while, and that was WAY better as far as side effects, but I got into an argument with my insurance over it, and decided to go back and try the generic again... So far I'm doing okay, but I'm on an "increase" week, and it's been a little challenging. I'm trying to hit max dose per my Endo's request. I'm to 1500 mg, as of this week... We'll see if it sticks.
I'll respond with more, soon.
I have also passed the information on to my daughter, ex, and stepmom to make sure they keep an eye on her for issues, since she's 17... She's almost the opposite of me physically, though, and inherited far more from her dad as far as disorders and asthma, etc., so I'm hoping it skips her...1 -
KnitOrMiss wrote: »she's 17... She's almost the opposite of me physically, though, and inherited far more from her dad as far as disorders and asthma, etc., so I'm hoping it skips her...
I literally did not have any defining symptoms until I was at least 24. I was even muscley (still got told to lose weight, I don't really know why people think women need to lose weight when it's muscle. I used to carry my 6'1" husband around.)
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I'm sorry that you had to suffer to gain that knowledge, but thank you for sharing it...
That being said, I agree that it is completely asinine to suggest someone lose muscle and health to adhere to some ridiculous chart that has no bearing... I'd probably have argued back with my body fat percentage... UGH...0 -
I would have, except I don't know it at the moment. My chiro might be able to get it for me though next time I see him.
Okay, so now that I'm not sick from scout camp I researched into the pill they gave me and discovered it's an androgenic progestrone pill and has had hirsutism reported as a side effect in non PCOS women. An old forum post about pills by someone named Meringoo who seemed very knowledgeable about which ones were best for PCOS said it was one of the worst. Another person (I think) also said only GPs who aren't knowledgeable about PCOS prescribe it, and it's apparently one of the first contraceptives prescribed by GPs as it's one of the cheapest.
I would think this is pretty proof positive they know jack all about PCOS despite being in the gynecologist department at the hospital.
I've been on it only ten days and I'm experiencing side effects. I had depression and mood swings on the cerazette and this is making that look like happy hour at my favorite bar where I could order oodles of whiskey wings on the cheap.1 -
I'm so sorry...
I downloaded a chart that I can't find right now, but it basically compared which had the most estrogen, progesterone, and adrogens, etc.
My pill is higher in estrogen, but that's what it took me to get level... Perhaps the artificial estrogen forced my body to stop producing it, reducing my estrogen dominance? I really don't know. I'll see if I can find the chart again...0 -
Chart: It's more than one page, but I'm not sure how many images it saved...0
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There's only the one page there, but looks like the most recommended pill for PCOS has no androgen activity at all.0
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Brainy moment. I guess the chart itself was only one page. I had another one that was 3 pages. I don't remember the differences between it...
https://www.nhpri.org/Portals/0/Uploads/Documents/NOTE_2_TABS_Contraceptive_Comparison_Chart_01_2012_2.pdf
I think that was where I found it originally...
Originally I was told to try Yaz or Yasmin, but some of the increased warnings from my previous med put me off of that idea. How weird. The one I'm taking now, I guess I was completely backwards on it. It's in the bottom third or fourth of the page. In the middle, it's called Microgestin (Loestrin in the first column, I think). I was told it was a higher estrogen pill, but apparently it's not, which actually does make me feel better, though it's a bit offputting that it is high in the androgen category (I take the second, higher dose). I don't really have high androgen systems at this point that I can quantify.
It did take bumping me up to the higher dose for me to get and feel level. Originally, I'd been on Ortho-Tri-Cyclen-Lo. That was pure he!L. Let me tell you. The different hormones every week was just pure chaos for my already overtaxed system. I had breakthrough bleeding for months, I feel like I was in perpetual PMS, and I was always moody/about ready to kill someone, etc. So yeah. They moved me to the other one...and it's done me really well since then.
But, I think I mentioned before, I do take it constantly, to suppress cycles as I have other complications, plus I'm in my 40's, so my baby factory is closed, but for surgical reasons, I can't do the permanent options.0
