Polycystic Ovarian Syndrome (PCOS) Community
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Avatar universal


Hi there, I'm 26 and I have been diagnosed with PCOS 3 years ago. I can't get much out of my doctor, so I wanted to ask you to tell me your experiences with this syndrome -- What are your insulin levels for instace? Mine was 3 times higher than normal when I checked it 2 years ago! How many of you have already developed diabetes? Does everyone with PCOS develop diabetes and, if so, when? At what age? I'm taking Metformin, Spironolactone and Yasmin everyday. I also have a very health diet, with roughly 120 - 140 gr carbs per day. I have a normal weight of about 55 kg at 165 cm. Even so I get hypoglycemic spells once in a while - with all the symptoms, cold sweat, blurred vision, trembling, faintness etc...And many times during the day I feel weird - I have many lows with no energy at all and again blurred vision...I almost feel the effect of every food I take in, which is horrible! I get sleepy and dizzy after eating sometimes. I know I get hypoglycemic often, I wonder if I get hyperglycemic also.  Last time I checked I had normal fasting glucose levels but I know that only the tolerance test to know for sure....What's your experience with diabetes? Please advise, thank you!
7 Responses
Avatar universal
Hi Luisa24,

Looking  back  I did have side effects of diabetes when  I had PCOS but I just thought with my weight loss my body was changing to my new size  , but when I was having my blood tests done before I was due to start IVF they found out I was diabetic but only diet controlled which  soon moved  up to  type 2 and still I have off days when am over tired or do not eat enough  like today as my son kept me up all last night as he wouldn’t settle, I might not have PCOS now but am stuck with diabetes :(

Avatar universal
Why may I ask do you take Spironolactone? I googled. I am only taking metformin right now and am not currently on BC because I am ttc.
Avatar universal
I'm taking spironolactone for my hair - the excess androgens cause it to fall out...Spironolactone blocks the androgen receptors at their sites. You don't have to take it if you don't have any of these: alopecia, acne or hirsutism. I wish I didn't have to take it either, I have read about a possible connection it has with breat cancer. And besides, you're trying to conceive and Spironolactone is totally out of question in your case. Stick with met and good luck!
Avatar universal
oh..I'm sorry that you have to take it. Are you having any side effects?  I do have acne but I am using proactive and its working fairly well along with my facial regimine that I came up with. As far as the hirsutism I just have been tweezing cause its not that bad yet...however it does seem like more these days. My cousin has PCOS as well and she has great results using electrolysis...she used to go twice a week but now she only has to go about once a month. Hers was really bad along her jawline had mass amounts of fuzz and under her chin but her skin is baby but smooth now, lol!
Avatar universal
    hi ,
my endo said you dont have to have diabets just because you have pcos . even people with insulin related pcos . just higher risk than people without pcos . and if you are eating healthy watching your weight and exercising its less likely you will have it .
    i have read loads of stuff about this condition in last few weeks and i understand your anxiety since it made me worried aswelll , but i think pcos is not an illness with certain lines , everyone is different  . and i think majority of the long term risks also related to obesity since its one of the most common symptoms of classic pcos .
       i would like to write my insulin levels but i dont know them , since been few years when i had my diagnostic tests and i wasnt interested in the subject that much back than .but i will try to get my health records and see if i have it done , if not i will ask for the test .my doctor wasnt too healpfull either he just told me that i didnt have anything related to insulin or glucose after that i started to research pcos deeper  .
       i can relate to many of your symptoms such as faintness , dizziness, low energy blurred vision and feeling weird ( is it like mental fog , confusion , in a dream feeling ?)  and i think they are either related to metformin or high anxiety levels atleast for me looks this way , thats why i hate metformin ,
       did they check your lipid profile , blood pressure and free androgen index . i think if you have a problem with your insulin you would show some increase with this values . i have heard alot of complains on forums women who use metformin with spiro have more fatigue , and anxiety .  i never used spiro but i think it is a hihg blood pressure medicine originaly . and i assume it may effect people more if they are already have low  pressures
          i also have some hair loss but im too scared to take more meds since cant even tolerate 500 mg metformin once a day :( .
Avatar universal
Hello, thanks for your reply! Yes, I have everything checked and, along with raging levels of insulin I also have raging levels of DHEA, an androgen. My testosterone is normal, but DHEA was twice the normal value. And insulin 3 times the normal value. I'm so anxious about diabetes because I could not get a clear answer in this respect. I think you are absolutely right about PCOS being more of an individual disease.... But my doctor did not enlighen me on my own risk and this is why I was asking to know other women's levels of insulin. The problem is that, from all I've read, the pancreas will become exhausted if it has to secrete that much insulin all the time. So, at one point, it will not be able to make enough insulin= diabetes. Plus, the cells react to the excess insulin by blocking it -- they become increasingly resistant (insulin resistance) and obviously the insulin will not be able to conduct glucose to the cells (they block it) = hyperglycemia. Well this is why I am scared -- I've read about diabetes and this is how it happens in normal individuals who simply eat a very poor diet. But what about me, if my insulin is so high despite my diet? I also also reassured initially by my doctor who said I don't have diabetes and only told me not to eat sweets anymore (which I didn't anyway). But considering all I've read, I can't be very optimistic...
Now, about what you've said...If your hair is also falling out spiro would do wonders...For me, the pill alone does not work. I also use Minoxidil most of the time. Yes, spiro can lower blood pressure, but I also have it quite low generally and the doc still prescribed it to me. And if you stay hidrated it's even better -- spiro lowers it by cleasing the body of sodium and sparing the potassium. I try to drink a lot of water with it, because otherwise my blood pressure will also be quite low.
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