First doctors appointment since diagnosis, many questions!

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First doctors appointment since diagnosis, many questions!

Postby MegRose » Sun Feb 16, 2014 10:20 am

Hi, I was diagnosed in November with PCOS following a scan showing many cysts and a high testosterone result. I was put on Marvelon by my doctor to try and combat my excess hair, alongside the laser hair removal I'm having. I have done a lot of research over the last 3 months, and have many questions for my doctor. Do you think it is ok to ask to see my scan picture? I think I need to see the cysts, and I'm interested as to how many I actually have. I also want to ask for my blood test result figures. I want the actual numbers so I can know exactly how high the testosterone is compared to a 'normal' girl.

The other questions I have for her are about insulin, as it's an area that confuses me, seeing as I am slim. My glucose level from my initial blood test came back normal, so she said I didn't need to worry about diabetes now. However, I have always felt like I have a very weird metabolism. People don't understand that if I don't eat for a while I feel like I'm actually going to pass out. And I seem to have naturally catered my diet to a low GI diet without intending to, as I have always found that eating sandwiches or big amounts of carb, or pizza etc makes me feel ill, have a huge sugar rush, my heart beating fast in my chest, and then feel very cold and very very tired afterwards. I don't understand how my glucose can be ok. Do you think it's ok to ask my doctor for an insulin resistance test? Even though my glucose was fine.

Lastly, I'm wondering about asking her if I can see a dietitian, to get proper advice about a diet. I don't know if she will just dismiss me as I am not overweight, but having a baby in the future is so important to me, and I want to start looking after myself and my diet now to give myself the best chance in the future. There's so much information out there I feel like I'd like to hear from a medical professional how to best look after myself through diet.

I guess I'm just going to feel like a very demanding patient, but I've had a lot of time to think about PCOS since I was diagnosed and I want to know more. How do you think the doctor will react? I've heard stories of them not being very helpful unless you're trying for a baby, which I am not.

Many thanks. And as I am new to Verity, hello! It make such a difference knowing there are other girls who have been through what I have been through. I've never felt like a proper girl. So it means a lot to know I am not alone.
Thanks a lot in advance for any wisdom you can share with me,
Megan
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Re: First doctors appointment since diagnosis, many question

Postby Jpowjo » Sun Feb 16, 2014 5:31 pm

Hi Megan,

I'm not sure how much I can help, as I'm struggling to get my diagnosis at the moment, so I'm at an even earlier stage than you! But I wanted to pass on a bit of advice someone gave me this week. They suggested I take my husband (or close friend/relative) with me to my next appointment, as it's often easier for someone who's less affected by your diagnosis than you to think of the questions that you may only come up with once you get home. If you're anything like me, you spend most of the time in the doctor's office with your brain struggling to soak up everything they're telling you! It can be very confusing.

Also, you're completely within your rights to ask for as much information as you need to work out what your next steps are, including asking to be referred to a dietician or specialist. Every patient is different and if the healthcare professionals you encounter don't seem to take you seriously, they're not being fair to you.

I've also never felt like a 'proper' girl and it's hard when you feel like your own body's working against you, but you're definitely not alone and at least you're now on the path to getting some answers :) something to be very positive about!

Best of luck,

Jenni
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Re: First doctors appointment since diagnosis, many question

Postby Hols969 » Mon Feb 17, 2014 10:28 am

Hi Megan, I wouldn't think it would be necessary to see your scan showing your cysts as they are only a symptom and not the cause of pcos, they can also come and go anyway so you could be rescanned in a month and have none. The cysts do not make the symptoms worse or cause ttc to be any more difficult because of the cysts.

If you had an IR blood test, did they do the initial blood test and then a sugary drink and then a further blood test an hour or so later (as this shows how your body deals with sugar), most places only do the initial blood test and often it doesn't come back with anything useful so I would ask for the two blood tests rather than the one and yes you have been diagnosed with pcos so yes I would ask for one as we have an increased risk of diabetes. I am 44 and am not insulin resistant so not every one is. From a pcos point of view, because of our metabolism which is slower, you do need to eat little and often so the fact that you are feeling light headed if you are not eating does not mean you are IR, but also we do not do well if we go too long between meals, I tend to have 6 smaller meals a day (no carbs at night) and tend to feel ok most of the time. If I miss my morning snack I can feel quite light headed and dizzy so it is important to eat a mid morning snack as well. In my view carbs are the route of all evil from a pcos point of view (white ones) so if you do eat carbs, try and stick to the brown stuff as it keeps our blood sugar more regular, it will reduce the tiredness as well because white carbs cause more of a spike in sugar I think which when it drops it then can make you feel tired.

As for a dietician.... well if you can find one that knows anything about pcos that would be good... unfortunately most know nothing about pcos from a diet point of view. The general advise is to stick to low GI, eat little and often and avoid as much white carbs and sugar as possible as it helps to keep our symptoms at bay as well. As for TTC, the main advise is to keep your weight in the normal BMI range and eat healthily, not everyone has issues getting pregnant, both my cousins have pcos and both conceived within the year and both now have 3, whereas it took me 3 years to conceive Noah who is 8, so you may not have any issues at all. Make sure your partners diet is good as well as 1/3 of fertility issues are now men, so get him on zinc tablets as this will improve his sperm so it will be good when you decide to try for a family as they will be raring to go....

Good luck, pcos is not the end of the world and really you have to take control of it as unfortunately you do get very little help from the NHS unless you are TTC, but you sound like you do want to grab pcos with both hands and get it as under control as possible. A combined contraceptive pill is good to keep the symptoms at bay and also increases your chances of conceiving when you come off it (it doesn't take a year to come out of your system or anything) and it is generally what endocrinologists recommend from a pcos point of view and for when you do want to try for a family as it increases your chances as your body is less pcos when you come off it.

Let us know how things go.
Unless stated, my views do not represent the official views, position or standing of Verity
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Re: First doctors appointment since diagnosis, many question

Postby MegRose » Tue Feb 18, 2014 8:34 pm

Thankyou very much for the replies.
It's difficult because I guess we educate ourselves about PCOS more than the doctors actually know. But she answered all my questions, and let me have copies of my test results. She thinks I don't need to worry too much about insulin resistance as I'm not showing any signs of diabetes, and am not overweight. I'm still a little baffled by the insulin thing, but I guess it's still pretty unknown in the medical world.

I've been really strict in the last month with my diet (low GI and no dairy) but she doesn't think I need to be too concerned with my diet, as long as I'm relatively healthy with my eating.
I'm gunna stick with my contraceptive pill, even though I completely have no libido anymore. But hopefully in time it will have some effect on my hirsuitism.

Thanks again,
Meg
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