Hi. My daughter age 16 was diagnosed with pcos earlier this year by a paediatric endocrinologist. She has acne. When she got a lot of sunshine and exercise over the summer she seemed to have a light period most months and acne improved. She does not have hirsutism or overweight. She may. Have thinking hair. Antibiotics for acne has not really helped. Periods have stopped again now for several months, she has had frequent headcolds, and her hands and feet are always freezing in the last few months despite warm clothes/house. The endocrinologist advice was basically come back when you want to have kids. I wonder should I be getting regular bloodtests for her? The feeling cold all the time is her current main issue...I do not see that listed as associated with pcos but perhaps if it is a multisystem disorder it is related?? She is reluctant to take the pill but I wonder should I encourage her more on that.
Hi. My daughter age 16 was diagnosed with... - PCOS UK (Verity)
Hi. My daughter age 16 was diagnosed with pcos earlier this year by a paediatric endocrinologist. She is really cold?!
I was diagnosed at 16 and at 36 I’m now only just had a referral to see an endocrinologist. My advice would be to push to get a management plan at a young age; I wasn’t overweight at 16 (no acne but had hirsutism and irregular periods), I’ve always been very active but over the years my weight has crept up whilst my condition has been unmanaged. I now can’t get any fertility support because of my weight but can’t get any weight loss help outside of stop eating takeaways (I don’t) and walk 10 minutes a day (I exercise most days). Keep pushing them for support and regular reviews.
What drew me to your post is your daughter always being cold, because I am too. The link with her periods and the summer is interesting; reading around PCOS there seems to be a link with low vitamin D, so it may be that now it’s darker her vit D has dropped. Maybe worth looking at adding a vitamin D supplement?
I really appreciate your reply Catstroke, that's interesting you are cold too. When we have done high dose vitamin d there does seem to be improvement so i am going back to that now. it's hard to remember what is good. I am starting her on omega oils too. It might be a silly question but what do you mean by a management plan? I am going to print out this next: file:///C:/Users/Ciara.Maye/Downloads/PCOS_Evidence-Based-Guidelines_20181009.pdf I'll be busy!
The advice on weight loss is exactly what I got too. I only got diagnosed when I couldn’t get pregnant and told no NHS help because of my weight but at that point I had no idea why weight loss never worked for me
Tough going
Thank you for your reply. I remember now I also spoke with a our local herbal advisor but when things improved for her I did not follow through, I'll go back to them.
Has she been tested for Hashimoto's and/or hypothyroidism? Common in patients with PCOS and would explain the cold extremities.
What exactly do you think the root cause is?
There’s no real answer to that unfortunately. Not enough research is my understanding.
Yes, makes me wonder about the sale of products claiming to get to the root.
Thank you Zazbag... She had detailed bloods done with endocrinologist, would they have shown up there I wonder? I'll look into it. I really appreciate your reply.
Hi Mumtodaughter,
PCOS will have a life long impact on your daughter and you are a great mum for not wanting to just accept this infuriating answer.
Managing the symptoms is all we can do but for my part I wish I could have had this diagnosis as early as your daughter because it’d have helped me well before wanting to start a family… for example with
- Managing weight. This is the most important one because it’s best to do before gaining. Losing weight is very hard. I would try out different dietary options to see which style best suits. For me a low carb / low sugar diet has been life changing, but has taken a very long time to fully get used to. For example realising that there are carbs naturally in many vegetables, means that you can eat unrefined carbs and feel satisfied while eating well. Switching out sugar for lower glycemic index options like honey, agave syrup or maple syrup depending on the recipe /drink. Eating food that fill you with nutrients (nutrient dense) and volume for satiation.
- I would do blood tests regularly and watch out for vitamin D deficiency as it is very common with PCOS. Supplements for this have helped me.
- Exercise is also something that helps me a lot but doing too much cardio means my mood crashes which is hard to manage. So I’d recommend balancing things out with a focus on strength training.
As others have said as well, having PCOS means she could have other conditions often found in those with PCOS.
There’s a lot that needs to be looked at specifically depending on her symptoms. Don’t just accept that one answer. She is not alive just to reproduce. She needs a lifestyle that helps her feel good. There are good doctors who care about women’s health… we have to find them.
Thank you so much IchigoKeikaku for your thoughtful and detailed reply. We always have cereal for breakfast, I'll look into protein options now. I'll arrange updated bloodtest in next couple months and I'll get her out of bed now (biggest battle with all 16 year olds!) For a swim. Thank you again .
The lifestyle feels great once you get used to it, that’s the plus side. And as with everything it’s about balance. She’s very lucky to have you to help her from a young age, and the knowledge is power. You can have a lot of fun getting creative with both food and activities 💪
The lifestyle feels great once you get used to it, that’s the plus side. And as with everything it’s about balance. She’s very lucky to have you to help her from a young age, and the knowledge is power. You can have a lot of fun getting creative with both food and activities 💪
Thank you!!!
I have the exact some issue, was diagnosed at the same age. I asked for further bloodtests and it turned out that my iron was low and that my thyroid was low. If your thyroid is low it can cause you to be very cold or more likely to get cold quickly. My hands and feet are always cold and I always wear heated clothes. Tablets have helped though.
Im happy to be messaged if you'd like to talk further xx
Hi Giraffe11111! Thank you so much for your reply, that is very interesting now about two people being cold. I'll note iron and thyroid. Recently I came across testing for 'intrinsic factor', I think it is related to iron absorption, but testing is not really done in Ireland for it, I would have to push for a test to be sent to the UK. Has it been an issue for anyone else here I wonder??
Also, your Giraffe name reminded me that my other daughter calls herself a Giraffe as at age 14 as she is nearly 6 ft tall. She was over the 99th centile for length at birth. I find this interesting because the 16 year old with PCOS was over the 98th centile for length at birth, was 2 years ahead of her peers up until about age 9, then, presumably when hormones started kicking in, her rate of growth slowed and she is now about average height. I read that in pcos rapid childhood growth and then stopping is a thing. Has anyone else had that experience?
There are tests that she can get done to confirm if she has PCOS or maybe thyroidism (hyper o hypo). And a as a health preference I normally do on my self once a year blood studies on everything since I have insulin resistance.
Also remember that acne, hairgrowth or fatness are the only symptoms associated with PCOS.
belenam11 , Thank you for your support. I shudder to think of what the glucose levels would be like after all the Christmas food we just had in the house! Wishing you and everyone in this group a good self care and healthy as possible 2024.
It saddens me to hear some of the medical profession hasn’t moved on!
I was in my teens when I was diagnosed, I’m 53 now! My only obvious symptoms were hairy legs, even blood test at first were normal but I was always cold and always tired. I was extremely active so all doctors were baffled they kept saying you’re not overweight! I went on the pill, then was diagnosed with under active thyroid so put on metformin. I didn’t want to rely on drugs so started to research (this was pre the internet!)
It’s been a rollercoaster but this condition CAN be managed. Staying active helped me but for so many years I was still insulin resistant because of my insane sugar cravings. Our sensitivity to all forms of sugar is so high and therefore getting the right nutrients is essential. I started following - Dr David Unwin (UK GP who specialises in diabetes) Michael Mosley (qualified as a doctor but is a journalist) The absolute game changer though has been embarking on Zoe - the scientific analysis of your body’s response to food, Prof Tim Spector. This new data about food is revolutionary.
Your support for your daughter is wonderful. Good luck to you both.
Hi sallylove , thank you for your references, I will follow up. We'll all need a post Christmas cleanse and to get out walking for a start!! Best regards for 2024 to you and yours.
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