Dizzy Dame Posted June 10, 2006 Report Share Posted June 10, 2006 Hi all,Based on my research, and some of the responses to my earlier PCOS (Polycystic Ovarian Syndrome) post, I'm curious to see how many of us have symptoms of PCOS, who'se been diagnosed, who hasn't, and what kind of POTS these groups have. If you have been diagnosed with PCOS, would you mind writing down what treatments worked for you?Thanks for adding your input! While this poll is not scientific, the data I collect may help answer some questions I have.NOTE: When I specify "do not have hyperadrenergic POTS", this means you have POTS, but do not have the hyperadrenergic variety. If you do not know, then you would classify in this poll as "not hyperadrenergic". Quote Link to comment Share on other sites More sharing options...
SunsetParadise49 Posted June 11, 2006 Report Share Posted June 11, 2006 I have ovarian cysts but they have never been diagnosed as PCOS...I have always wondered if ovarian cysts were somehow related to POTS. Quote Link to comment Share on other sites More sharing options...
lthomas521 Posted June 11, 2006 Report Share Posted June 11, 2006 If you have PCOS and you are overweight, the best thing is to lose weight, by eating less and exercising more. That's often enough to restore normal cyclicity and fertility. Or at least that's the best thing if you don't have POTS. Sometimes POTS makes it impossible to exercise much. PCOS is strongly associated with insulin resistance, as in type II diabetes. So if you have PCOS, you may need to take an insulin-sensitizing agent, such as metformin. I suspect that some cases of POTS result from problems with glucose control and insulin sensitivity. If you have POTS and the symptoms and signs of PCOS (overweight, abnormal facial hair, irregular or absent menstrual periods), you should really see an endocrinologist. I say that even though my personal experiences with endocrinologists have been awful. They all missed the POTS diagnosis and said that there was nothing wrong with me as far as my endocrine system went. Shortly after being told that by an endocrinologist, I saw a nephrologist who found that I was secreting 8 times as much aldosterone as a normal person and prescribed two kinds of hormone replacement for me: fludrocortisone (Florinef) and erythropoietin (Procrit). But if you are having a problem with blood sugar, an endocrinologist might be helpful. At least they're supposed to be. Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted June 12, 2006 Report Share Posted June 12, 2006 I just wanted to mention about metformin.. I was on t his last year before being dx'd with PCOS.. i was on it to treat diabetes.. and ahd to go off of it b/c it cause some really BAD diarrhea...METformin is a rough drug to be on GI wise.. BUT if you can get past the side-effects.. its a decent drug to treat/manage diabetes/insulin-resistance....they recently wanted to put me back on it b/c it is the first line drug being used to treat PCOS/w/ diabetes/insuline resistance... my endo and i talked.. and decided that metofrmin is not in "my" best interest b/c I'm allready staying at a constant level of dehydration despite IV's and salt water loading)...I just wanted to throw this info out there.. as dehydration is not in our best interests!and if you do have diabetes/and or insuline resistant and have PCOS as well... be sure to drink more the water/fluids the usual so that you do not get dehydrated please!! I will more then likely be starting insulin shots to treat things along with some hormones and things.. also my testosterone levels started getting high back in 2002-2003.. and now they are higher then they where 4-5 years ago.. and i just now go the dx of pcosalso I too have had symptoms of PCOS for about 9+ years.. and ddint get dx'd till a few weeks ago and I have seen 3-4 different endo's along with gyno's and various other docs.. so i agree finding "AGOOD" endocrinologist is the key.. also if you are luck enough to find one that will be tuned into you pots/dysautonomia as well is also good! Quote Link to comment Share on other sites More sharing options...
Dizzy Dame Posted June 14, 2006 Author Report Share Posted June 14, 2006 Thanks guys for all your answers. I go in this friday for my ultrasound to check for cysts...hopefully I'll start getting answers to some of my symptoms that don't seem to be POTS related. Hugs,Lauren Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted June 15, 2006 Report Share Posted June 15, 2006 good luck lauren.. hope that all goes well for you and that you get some answers soonplease do let us know what you find out Quote Link to comment Share on other sites More sharing options...
SunsetParadise49 Posted June 16, 2006 Report Share Posted June 16, 2006 Good luck Lauren at your ultrasound tomorrow! Let us know what you find out when you get the results back. Quote Link to comment Share on other sites More sharing options...
Dizzy Dame Posted June 16, 2006 Author Report Share Posted June 16, 2006 Thanks guys for the good wishes I'll let everyone know if they find anything. Hugs,Lauren Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted April 12, 2009 Report Share Posted April 12, 2009 i have had symptoms of PCOS and recently just got blood tests and an ultra sound. All they did was send me a letter stating that everything was found normal... should i go get a second opinion? Quote Link to comment Share on other sites More sharing options...
firewatcher Posted April 12, 2009 Report Share Posted April 12, 2009 I have H-POTS and something more like hypogonadism. My hormones are all screwed up, but all low. My androgens are barely detectable. Three endos still don't know what is going on, but Hormone Replacement Therapy has done wonders for me. It is not menopause, checked that too. Quote Link to comment Share on other sites More sharing options...
Lizzegrl Posted April 13, 2009 Report Share Posted April 13, 2009 Dani, have you seen a reproductive endocrinologist? My OB/GYN ran some tests, but my R.E. said that often a gyn doesn't dig deep enough in the testing. He said that a person with PCOS can have specific tested hormone levels in the normal range, but that when they do percentages of hormones and dig deeper they can be all messed up. I saw several gyns before I finally saw a reproductive endocrinologist who diagnosed and treated my PCOS. Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted April 13, 2009 Report Share Posted April 13, 2009 Dani, have you seen a reproductive endocrinologist? My OB/GYN ran some tests, but my R.E. said that often a gyn doesn't dig deep enough in the testing. He said that a person with PCOS can have specific tested hormone levels in the normal range, but that when they do percentages of hormones and dig deeper they can be all messed up. I saw several gyns before I finally saw a reproductive endocrinologist who diagnosed and treated my PCOS.Do you have to get a referal for that? Because i have a feeling if i go in to my doc that he will just tell me that they checked out fine and not give me one They also dont believe me because i am skinny 5''11 and 121 pounds. But i do have some other symptoms Quote Link to comment Share on other sites More sharing options...
arizona girl Posted May 9, 2009 Report Share Posted May 9, 2009 Hey you all, PCOS is something I know very well. I was diagnosed with it after a miscarriage 12 years ago. Dani, a regular endocrinologist can help you, you just have to find one that is up on hyperinsulinemia which is what causes pcos. Since, you are in arizona, Dr. Mishra at endocrinology associate in phoenix, is who first treated me. PCOS is basically female metabolic syndrome or syndrome X. It got named after just one of the many symptoms associated with it, the cysts on the ovaries. You can have metabolic syndrome with out cysts on your ovaries.The most important test in my opinion is the fasting insulin test (not glucose, insulin). You can also have a side by side glucose tolerance test with a insulin tolerance test. Other tests that can show abnormally are the FSH LH female hormones, they can appear in the normal range, but if they aren't almost the same number, ie. one is much higher then the other, there is an imbalance. That's how mine were. Also have your male hormones tested. If you have facial hair or hair where it shouldn't be your testosterone may be elevated. A lot of docs in correctly think the male hormones have to be elevated to have pcos, that isn't always true, in my case it is not true. There are other tests as well. If you google pcos or hyperinsulinemia you will find a ton of info. Also you have to ask your doctor for the fasting insulin test, they will almost never offer it up on there own. A reproductive doc is more likely to though. They use glucophage to get the female cycle to start ovulating again.PCOS can lead to both diabetes and heart disease, not just infertility, so it is a serious disorder. My cholesterols are really high. My blood sugars so far are normal. I also was not over weight when the cysts were found, nor do I have facial hair. There are thin people that have this. Also I came across some research that shows the high insulin can cause autonomic dysfunction. Yes the glucophage can be rough, many adjust to it, it does help, also they are now offering the injectable diabetes drug byetta to treat it. I may go that route after I figure out all the pots and colon rupture stuff I'm dealing with.Get a copy of your labs, so you know what tests they did. BTW what are your symptoms of pcos?I have syncope with orthostatic hypertension and tachy, I also get supine hypotension and brachy. I don't know if I have the hyperandregenic type of pots yet, I'm stilling waiting to get all that stuff worked up.If you have any other questions about pcos let me know. Quote Link to comment Share on other sites More sharing options...
poppetkazutaka Posted October 4, 2009 Report Share Posted October 4, 2009 If you have PCOS and you are overweight, the best thing is to lose weight, by eating less and exercising more. That's often enough to restore normal cyclicity and fertility. Or at least that's the best thing if you don't have POTS. Sometimes POTS makes it impossible to exercise much.As one who goes to a dietician BE VERY CAREFUL with this advice. Always make sure you are getting what YOUR METABOLISM is to get. I was trying to eat less and was only getting 500-1000 and was GAINING weight. I damaged my metabolism to -7%. Apparently, I need to eat (at least now) 1450 a day and exercise only 300 calories of that away. Anymore and I will not lose.Always see a dietician or doctor before starting a weight loss program. ALWAYS. Especially if you have PCOS and YOU WILL have issue losing weight like I have.Also, for me, I'm not trying to get preggie so I started Tri-Nessa and that has helped tremendously with the clots, pain, and other symptoms. I have had trouble free periods for three months now. :3 Quote Link to comment Share on other sites More sharing options...
Tammy Posted October 7, 2009 Report Share Posted October 7, 2009 I was diagnosed with PCOS years before developing POTS, so not sure if there is a connection. I know people who have PCOS who are healthy too. Quote Link to comment Share on other sites More sharing options...
Mrs. Burschman Posted October 8, 2009 Report Share Posted October 8, 2009 I have POTS and PCOS, though I don't know what kind of POTS, so I didn't vote in the poll.I take metformin, 1,500 mg per day. It works great, even though my blood sugars are fine. I think my ovaries are just too sensitive to insulin, so even normal is too high for them. Or something.I asked my reproductive endocrinologist once if he thought there might be a connection. He said he wouldn't be surprised.Amy Quote Link to comment Share on other sites More sharing options...
kayjay Posted October 8, 2009 Report Share Posted October 8, 2009 Hi- I didn't vote but I have had surgery to remove cysts and I have endometriosis and hyper- Pots Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted January 7, 2010 Report Share Posted January 7, 2010 Cysts but never a dx of PCOS.I don't think they were as aggressive about a specific diagnosis in the past as they are now. Quote Link to comment Share on other sites More sharing options...
adfrasure2282 Posted August 16, 2023 Report Share Posted August 16, 2023 I have recently been diagnosed with POTS and PCOS. Most symptoms of both can overlap and it has taken years to find this diagnosis. The Dr's have told me I was in heart failure, hypertension, lymphedema, DVT x 2 unprovoked, and the list goes on and on. I have had heart caths, vein therapy, medications galore, and just about every test in the last 10 yrs. I'm not sure if these 2 diagnoses are just something they have settled on, or if the new medication Spironolactone will help eliminate some of my symptoms. I'm willing to try anything at this point. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted August 17, 2023 Report Share Posted August 17, 2023 @adfrasure2282, have your doctors considered whether spironolactone is appropriate given its diuretic effects? I have a condition that is sort of similar to PCOS, and I take cyproterone acetate to lower my androgen levels. It has no diuretic effects. Also, if you are having hypertension that is hard to control, has anyone checked for Conn’s syndrome? It’s another poorly known one, I’m afraid. Sorry to hear you’ve been through so many tests and diagnoses. Quote Link to comment Share on other sites More sharing options...
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