Pcos

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1

Hi.  Does anyone else here have PCOS?  I was just diagnosed with it about a month ago.  I'd been gaining weight, I've always had extremely painful and heavy periods, my A1C just will not come down, and I finally just started googling stuff because I knew that something was wrong and my doctor has always just written my symptoms off as being due to my Type 1 Diabetes (I've been diabetic since age 4.)  I came across info about PCOS and it seemed like I might have it.  I asked my doctor to test me for it (of course he got annoyed), but he wrote out the script for bloodwork anyway, and when the results came back, they were positive.

He's giving me Fortamet for it, and so far, I've already noticed some positive changes.  I also have Hashimotos Thyroid disease, and apparently you're more likely to have PCOS as a T1 and with Thyroid disease.  Theres research that suggests that PCOS is an autoimmune disease, which would make sense for me.

Anyway, I was just wondering if anyone else has PCOS, and how you've dealt with it.

Molly

2

Molly-

I just read your bit about PCOS and was really interested in learning more.  I do not think I have that per say, I googled the symptoms and they do not fit me.  But I have wondered if I had cysts before, and if that has affected my BS.  I have randomly had bleeding and ovarian pain after running/ exercising, the pain significant enough to stop what I am doing for a minute or two before it passes.  I also feel like my monthly hormonal swings are making my basal rates hard to predict.  Such as, about half a week ago my overnight basal rate was pretty low and I was still waking up with lows, then it switched- now I am waking up with highs at that same time (same activites etc..).   I am not sure if this is just  normal fluctuation, or what, personally I feel like something it off.  I was told that my abnormal bleeding was due to high BS (my A1C is generally from 7-7.5), and once that was better it should go away.  I feel like something else is going on though, I am very active with my care, and still have these switches.  Maybe I am just not looking at the big picture enough?  Sorry this doesn't address your question, I really respect your input and knowledge on this forum and was wondering what you knew about this!

3

Although the symptoms seem pretty broad spectrum- unless I am misinformed.  Anyway, I would like to learn more about this! 

4

Hi Ginny,

Thank you for your kind words. :)  From what I've been learning about PCOS so far, it seems that a lot women don't show all or very many of the symptoms.  For example, I mainly noticed that I've been gradually gaining weight, and that my periods were irregular and really painful, I've always had a hard time controlling my blood sugars, and I did have a history of ovarian cysts.  However, I don't have a lot of the other symptoms like excess hair growth or breathing problems. 

I had an experience similar to yours with the sudden pain.  It was so bad I had to lay down on the floor for a minute lol.  I later went to my OBGYN for it and she diagnosed me with ovarian cysts.  That was years ago, so I wonder now how long I have been living with PCOS...

Another interesting thing I learned is that Type 1 Diabetic women are way more likely to have PCOS than non T1 women.  I found a study by the Journal of Clinical Endocrinology and Metabolism, where the tested a group of T1 diabetic women for hyperandrogenism (too much testosterone, which causes the symptoms of PCOS) and also for full blown PCOS.  In the group of T1 women, 39% had hyperandrogenism, and 19% had PCOS.  A recent study done on nondiabetic women found about 6.5% of them with PCOS, so that is a big difference!

The study suggested that T1 Diabetic women are more likely to have PCOS because, as T1's, we use more insulin than non T1's in order to maintain tight BG control.  This state of "hyperinsulinemia" causes the ovaries to produce more androgens, or male sex hormones.  I'm not sure if this causes cysts, or what the next physiological steps are, but it appears that PCOS develops as a result of the hyperinsulinemia.

Knowing all of this, I'm more than a little annoyed that my doctor never had me tested for this before.  I had to personally insist on being tested for it.  It can be an extremely frustrating feeling, as you said, to feel that you're being so active with your care, but hormonal changes are just taking the reins and throwing your blood sugars off.  Now, I'm not saying I think you have it, but if you are concerned about your menstrual cycle and how extremely it has been affecting your blood sugar, it might be worth it to ask your doctor to just run the test for PCOS just in case.  It's one simple blood test (testosterone) that can be tagged onto your regular blood work.  Since beginning treatment, I've seen a great positive change in the degree of control I have over my blood sugars.  :)

Hope this helps and sorry for the looong post...I just can't help being long winded sometimes Lol!

Molly

 

5

I always appreciate the thoroughness (is that a word?) of your posts!  I must have had a cyst at least, and am due to go to the endo very soon.  I think I am going to throw it out there, and really address the variation of basal needs and unpredictable nature of them....  I am constantly amazed at how little my dr informs me or even suggests looking into different resources to help with my control.  I feel like I always get the token " alright well let's adjust this basal rate and see how that does" rather than stepping back and asking about other things in my life that may be affecting my care.  I know how to adjust my basal rates myself- if I waited every 3 months to ask about that my control would be worse!  Considering how holistically diabetes affects your body, I am not sure why they don't help put the pieces together rather than just adjust the insulin rates.   I've learned more on this website about diabetes care and resources in the last 3 months than I have from my dr in the last 3-4 years.  So frustrating! 

6

I'm going to go research PCOS now. I hadn't ever heard of it. The doctors in this part of the country are a little... slow.  You piqued my interest with the information about wild blood sugar fluctuations.  My sugars bottom out the week or so before my period, then skyrocket during menstruation.  My periods are totally irregular, so I can't even predict when the fluctuations are going to occur so as to counteract them. I've always just accepted all of this as some kind of weird hormonal imbalance.  Is wild b.s. fluctuation just prior to, and during, menstruation abnormal for type 1 diabetic women?

7

My BS are weird during the cycle: high during PMS, and then about a day or 2 into the period they plummet.  Oh, but I should add, the highs during PMS are only in the morning, then I have crazy lows all night; makes for great sleeping.  It also makes me realize these fluctuations definately seem hormone dependant, other variables are not changing as rapidly as those. 

And I was looking into a few other things.  If my BS gets high, my cramps get worse.  Apparently the hormones (I think there are quite a few) in the group called prostaglandins? are responsible for cramping.  Anyone ever hear of any correlations between high blood sugars and elevated levels of this hormonal group, or any other one that is correlated with the cycle? 

I also have trouble curbing and predicting if my BS are going to be high or not.  Last night they ran higher (menstrating)~ 170 all night with one dip of a low.  Yesterday I ran 4 miles (around noon), so was thinking I may have an overnight low.  The night before (menstrating- great all night.  The 2 nights before (PMS)- horrible, I had to turn my basal rate down to 50% in order to deal with the lows.  I am not sure how to predict what kind of night I am going to have. 

My endo has never addressed the issue of a possibly hormonal correlation and difficulty with controlling BS during the cycle, other than "increase your basal rates".  I am wondering about the long term effects of using a synthetic hormone such as insulin, on other hormones.  There has to be an effect! 

8

So both my gyno and nurse practitioner said no to me about having PCOS... thoough I am not totally convinced...

I did start on low dose microgestin birth control, and this seems to be helping a lot.  So far I haven't had too bad of side effects, sometimes slight cramping or spotting, but honestly compared to the bs swings with the hormonal fluxes, I don't mind.

9

Ginny,

I forgot to reply to this post!  How is the birth control working?  You must have been on it about a month now judging by the date of your last post.  If you're still not fully convinced about the PCOS it couldn't hurt to ask your endo.  Mine just increased my medication.  My numbers only went down slightly from my last blood work, but I have noticed that my cycle has been way more predictable since starting treatment.

Molly

10

No problem- it seems okay, though I sometimes have weird ups and downs anyway.  I am assuming it maybe related to exercising? and needing to adjust my basl rates more.  It seems those change every few weeks. I am going to keep trying this a while longer, I haven't seen any apparent adverse effects, and the predicatiblity is nice.

11

I was just dx today with PCOS, and didn't bother checking the boards before creating my own (oops...).  But I'm actually not on insulin at all right now (strong honeymoon :) ) but I've just had irregular period (maybe 3-6 periods a year) since I was 13.  My endo told me it's not okay (although my gyno always said it was fine...) and she just got my blood work today and said she knew bc my testosterone is high.  I don't think I have any other symptoms though...

12

I am seriously wondering if I too may have PCOS. The next time I go to see my endo I think I'll have her order the lab tests. I have very unpredictable cycles and they are NEVER " normal". I can skip 2-3 months, then get it 3 times in 6 weeks. When I am on my cycle it can last anywhere from 7 to 14 days or end abruptly after 2 or 3 days, ugh!!!! Sometimes the flow is mild, moderate, severe or just barely there. I hate it, there are so many things that have been ruined for me by this stupid problem. I have atleast 2 periods a year where I can't get out of bed it hurts so badly. I had a pelvic ultrasound done in 2000 or so and I did not have cysts. Hmm...now I am very curious. I see my endo in Aug. 2010 I'll post what happens.

13

I got PCOS when I was 14 because I stopped having my periods altogether (which I thought was great at the time!). I had been a normal weight before but around that time I put on at least 25 pounds. I guess due to the excess testosterone, I had trouble with excess hair growth too. I've had an impossible time keeping the weight off, exercising hours every day and I am sure the PCOS is what is causing it. I went on birth control pills when I was diagnosed and that helped with having regular periods, the acne and hair. I started taking Metformin last year too which is supposed to help with the insulin resistance that comes along with this problem. I think my diabetes would have been better controlled all these years if the PCOS didn't give me such problems with my weight.