Dr just called. Our 17 yr old has polycystic ovarian syndrome (PCOS) based on the tests she's had (and no menses).
She has few symptoms until recently. Growth in facial hair, weight has been an issue, and lack of menses. (Has never had.)
We'll see an endocrinologist when the referral goes through.
The nurse just called and said this is a "rather serious case for someone so young because her insulin numbers on yesterday's test were off the charts.". Our daughter's fasting insulin (not glucose) level was 36, at one hour (after the drink) it was 230, and at two hours it was 290.
My question is, has anyone else had a teen with this? What do they do to get the hormones back in balance?
Posted by Lymetoo (Member # 743) on :
Moving to Medical Questions
Posted by trimom (Member # 25843) on :
I've had PCOS for years and best way to control it was with a low carb diet and exercise but diet was most beneficial.
My reproductive endocrinologist said I was the rare case that did what she recommended and got better.
PCOS when I was younger was more a fertility issue but it has other health consequences.
If you can go to a reproductive endocrinologist that works with older teens instead of regular endocrinologist or one that works with infertile couples. I saw a researcher at Mass General who was great.
Posted by seibertneurolyme (Member # 6416) on :
I do not have lyme but have had PCOS since my teens. It was not correctly diagnosed until I was in my late 20's. The important thing is to get the body to respond to insulin correctly.
At one point I was prescribed diabetic meds, but since I do not follow a strict diet (yes I know I should) I mainly rely on cinnamon capsules and also take chromium and other supplements.
Hypoglycemia is one issue that needs to be watched for.
If she has not been tested I would also suggest testing for thyroid issues as well.
Bea Seibert
Posted by Keebler (Member # 12673) on :
- Has she been diagnosed with lyme or other TBD?
If not, she should be. Of course, now she needed immediate attention to the blood glucose and cyst issue.
But, IMO, it's also essential to have a LL doctor invovled in the fuller assessment and treatment plan since lyme can cause every thing mentioned.
A LL ND (naturopathic doctor) would also have excellent advice on all counts and wider range of support methods along the way, as a team member.
If surgery for the cysts is required, there are certain things to avoid and certain thing to help that LLMDs and LL NDs know that other doctors do not.
Steroids are often given during or after surgery. If lyme, steroids can make lyme terrbily worse and much harder to treat in the future.
There are also specific supplements that can help with all the processes. But a LL ND will hold the best knowledge about all that.
This book & site explain why lyme, and Cpn, caused serious weight gain in some patients and how, once the infection(s) were addressed, it just seemed to nearly fall off.
One of the important points, though, is that even thin people can have fatty veins (a sort of "interior obesity"), so this book is for everyone, not just those carrying more weight:
Thanks everyone. She has had a really extensive workup, then further tests for insulin level spikes.
Her pancreas is overproducing insulin, so that's where her dietary issues (portion control & eating between meals) and more exercise will be addressed.
As you know, with referrals, we are awaiting a call from the endo the gyn is sending her to.
I've got to tell her when she gets home from school in a few minutes. I want to be positive when I do. She has prided herself on how healthy she is and how she is the strong person in our family. Sigh...
Posted by Judie (Member # 38323) on :
I was diagnosed with PCOS when I was 18. I had a cyst the size of a grapefruit on my ovary.
Birth control pills and/or metformin is the typical treatment along with spironolactone for hair growth.
It does not fix the problems, only masks them. After taking these throughout my 20s, my body was even more messed up.
I switched to Vitex and have been taking that for several year. This CURED my PCOS. My periods became regular.
I had an ultrasound last year and my ovaries are 100% normal.
Good luck. There are couple ways to proceed with this.
Posted by Judie (Member # 38323) on :
By the way, this is NOT the end of the world. This was one of the easier health problems to fix.
The first LLMD I saw was an endo/gyno.
I had already been on Vitex for several years (from the suggestion of a Naturopathic Doctor) by that point.
The LLMD said that she treats PCOS with Vitex and/or metformin, and a low-glycemic diet.
Posted by jkmom (Member # 14004) on :
My daughter has not been diagnosed with PCOS but she does have the high insulin problem. I have been taking her to a functional medicine practitioner, so she hasn't had the detailed tests that the endocrinologist would do.
The doctor told my daughter to eat low carb and to try to follow the paleo diet.
My daughter's hormone levels were abnormal also and she is supposed to take bio-identical progesterone to try to regulate her levels. The doctor said most doctors would put her on birth control pills but she prefers to customize the levels. She will only take the progesterone during certain days.
I think this doctor is concerned about PCOS for my daughter, but she didn't say she had it now.
Posted by Dove7 (Member # 39546) on :
Judie, what is vitex? We won't know the next step until the referral. Keebler, after the endo, she'll see my LLND to get energy tested and see if some herbals are needed.
She's been eating low carb which means low calorie all week. She is starving when she gets home; today she made wheat rollups/burritos with black beans for her lunch, yet she was hungry right after school.
I know that I used to need to eat about every four hours some good protein and fruit or veggies. Unfortunately, a high school schedule doesn't lend itself to that type of eating.
We both are leery about this due to my mother's diabetes, which she didn' t/wasn't able to control very well. She took the news pretty well tonight. She said she had a feeling about it and that was why she'd been looking for a diet to use.
We talked about the weight watchers, american diabetic, and vegetarian/fowl types of eating just a bit. She's the type who processes things deeply.
Posted by Judie (Member # 38323) on :
I'm so glad that she took the news well. She's probably going to feel better too when she starts treatment.
Some beans are actually high in carbs (I don't know about black beans). A family member is on a keto diet (needs to eat less than 50mg of carbs per day) so I've been looking at that diet a bit.
I know my relative is avoiding beans.
I'll PM you about Vitex.
[ 04-19-2013, 04:24 AM: Message edited by: Judie ]
Posted by jkmom (Member # 14004) on :
My daughter was a vegetarian and was told her sources of protein were too high in carbs. She was eating lots of beans and isn't supposed to eat them now.
She is supposed to eat meat, veggies, fruit, nuts, good fats, no sugar.
I hope your daughter isn't a vegetarian. It has been very hard for my daughter to start eating meat.
Posted by Razzle (Member # 30398) on :
I think it might be wise to eliminate gluten & dairy.
Both are known to mess with hormones, and diabetes and other issues have been linked with both gluten intolerance/Celiac and dairy consumption (Type 1 Diabetes).
In fact, I think the Paleo diet would be perfect...it eliminates bad carbs, dairy, & gluten.
And watch out for GMO's, artificial sweeteners and preservatives... Cook organic, from scratch (i.e., no packaged foods) as much as possible...
Anyway, I've read that PCOS is from too much testosterone...so yeah, I think a reproductive endocrinologist would be a good place to start...
And you may need to also enlist the help of a Naturopathic or Integrative Physician to prescribe bio-identical hormone & other organ support.
Posted by Dove7 (Member # 39546) on :
Yes, she has been vegetaria ( w/ fowl), so we will need to ask more about the beans and legumes and carbs.
We've worked hard to limit or rid artificial sweeteners, flavors, colors, etc. as much as possible. Finding hidden sugars and preservatives has been an education.
Fortunately, we started the process of revising cooking about a year ago, but we're always learning.
Isn't it amazing how one hormone such as insulin can throw off three or four others?
Again, I feel very lucky that our PCP is part of an integrative and fnctional medicine practice w/an LLMD and a LL naturopath. If only he had an endo and a dietician too.
Also, since she has never had a period and facial hair began growing the last two months (imagine that as a teen), I wonder how her body has been dealing with this.
Now we also were told by the nurse yesterday that excess pancreas activity makes almost all food that she eats create belly fat cells and that until we begin to get that addressed, she won't have that change.
Sure is easier to have the health issues myself rather than have my child have them.
Posted by Dove7 (Member # 39546) on :
Yes, she has been vegetaria ( w/ fowl), so we will need to ask more about the beans and legumes and carbs.
We've worked hard to limit or rid artificial sweeteners, flavors, colors, etc. as much as possible. Finding hidden sugars and preservatives has been an education.
Fortunately, we started the process of revising cooking about a year ago, but we're always learning.
Isn't it amazing how one hormone such as insulin can throw off three or four others?
Again, I feel very lucky that our PCP is part of an integrative and fnctional medicine practice w/an LLMD and a LL naturopath. If only he had an endo and a dietician too.
Also, since she has never had a period and facial hair began growing the last two months (imagine that as a teen), I wonder how her body has been dealing with this.
Now we also were told by the nurse yesterday that excess pancreas activity makes almost all food that she eats create belly fat cells and that until we begin to get that addressed, she won't have that change.
Sure is easier to have the health issues myself rather than have my child have them.
Posted by marypart (Member # 27012) on :
A friend of mine had PCOS in her teens with the resultant weightgain and reproductive problems.
She went on metformin in her 20s and bingo, the weight came off, her period came back, and she was able to get pregnant.