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PCOS? Insulin? A Second Opinion Would Be Appreciated

EmB

Absolute Peach!
#1
Hi everyone - been a while since I posted, as it's been busy and kinda wild. Just before I start - there's talk relating to menstrual cycles, so read if you dare.

I recently came across a post on Facebook, talking about PCOS. I didn't know much about so read up and... well, I've dug myself into a rabbit hole.

I'm firstly curious if I have PCOS. There are three main symptoms - irregular periods, excessive hair growth on face, chest, back, etc., and hair loss. I don't get any excessive hair growth on my face - but my periods have always, always been irregular. In fact, they were completely random, I never knew when they would start. They have also always been very heavy, to the point I'd have to take a couple days off work / college when they started. I have the implant now so can't comment on how they are currently, as my periods have stopped due to that (hallelujah, honestly). I always assumed it was related to my weight and never really thought about it.

I also certainly have very, very thin hair. My scalp is very, very visible, I always lose quite a lot of hair generally. I assumed this was genetic - my mum and sister don't have thin hair, but my dad does, so I assumed it could be hereditary from him (I have inherited pretty much every other appearance quality here).

So. I also read there was a relationship between PCOS and insulin resistance, that one means you're more likely to have the other. And insulin resistance also sounds like it fits with me.

The first is that I have acanthosis nigricans, which is basically a dark patch of skin on the back of my neck. I've had this for a while but dismissed it as nothing.

I also struggle with my weight, my cravings feel uncontrollable and I feel like I have no self-control around food. I believed my cravings were psychological, but now I'm wondering if there is a genuine biological element to it. I have tried many diets with no success - in fact, only one has worked for me.

This leads me to the point where I considered it may be a genuine issue, that perhaps it may actually be something. I tried the ketogenic diet for 6 or 7 weeks last year, cutting out carbs and sugars (I stopped due to a personal issue that made me want to eat nothing but ice cream and cry). When I was on keto - my weight was actually going down, which I was thrilled about. But I also noticed other huge changes - that patch on my neck? It practically disappeared. My energy levels were so much better than they had been before. My mood swings were less intense. And my cravings? Non-existent.

This makes me feel that it's an insulin problem, that there's some sort of resistance and glucose can't be absorbed properly. It would explain my easy weight gain, my cravings and lack of control, my neck, my lack of energy, my hair loss, and period issues, even. I've done a lot of reading and feel like it sounds possible, but also don't want to self-diagnose. I'm sorting out a trip to the GP but this will take a while, and I wanted a second opinion - I reached out to someone but they haven't gotten back to me and all of it is kind of overwhelming me, for good and bad reasons. I'd love your thoughts, no matter how small, and if you've had experience with either, I'd appreciate hearing about it.

Sending hugs
 

HappyKitty

•✮• SF's pet kitty, the cheerful and purest. •✮•
#2
Hello. I has it and I realised its cause my family genetics. If you want chitchat about this, I’m available in inbox. I wouldn’t want to be graphic about it here cause this condition is seriously heartbreaking.

Anyway, if anything, @Ash600 is also knowledgeable at this haha.
 

Walker

Admin
SF Social Media
SF Author
SF Supporter
#4
Hi Em. It's worth having a chat with your GP about. They would start off with bloods to check the hormone levels and such that would be the first indicator if you would need to be seen more in depth. It sounds like you're not losing your mind or anything - ask them!
 

Ash600

Of dust and shadows
SF Creative
SF Supporter
#5
Hi Em,
What I suggest is to try and hang fire for the moment if you can and try not to jump in and out of rabbit holes. These symptoms can be indicative of other conditions so let your GP run the necessary tests so as to ascertain what's going on. Once they know what they are dealing with, then we can go from there.
 

Przym

Well-Known Member
#6
You might be right. Look into Dr. Jason Fung. He's done some research on fasting and a low carb diet for people suffering from diabetes and other ailments.

Sounds like the ketogenic diet worked for you, but a personal issue got in the way. I'm starting it as well as I think I may be pre-diabetic and have hormonal issues.

These videos might help:


 

EmB

Absolute Peach!
#7
Hi Em. It's worth having a chat with your GP about. They would start off with bloods to check the hormone levels and such that would be the first indicator if you would need to be seen more in depth. It sounds like you're not losing your mind or anything - ask them!
Hi Em,
What I suggest is to try and hang fire for the moment if you can and try not to jump in and out of rabbit holes. These symptoms can be indicative of other conditions so let your GP run the necessary tests so as to ascertain what's going on. Once they know what they are dealing with, then we can go from there.
Thank you both for the advice! You're right, I need to let my GP look into it before making any definite decisions about it. I don't want to self-diagnose by any means; I think it's just realising that all of these things in fact aren't normal, like I assumed they were, and brushed them off. My anxiety is definitely a little intense currently because it's never fun to consider there may be something wrong; hopefully, I can get some clarification on this. I'm hoping I can get an appointment next week.

You might be right. Look into Dr. Jason Fung. He's done some research on fasting and a low carb diet for people suffering from diabetes and other ailments.

Sounds like the ketogenic diet worked for you, but a personal issue got in the way. I'm starting it as well as I think I may be pre-diabetic and have hormonal issues.

These videos might help:


Thank you - I picked this notion of keto helping people with PCOS/diabetes/etc. up first from when I was dieting, I saw a lot of testimonials on Facebook and other communities where people were thankful at how it had managed their symptoms. I've done a little more scientific reading today and it seems to be a useful tool - but honestly, whether I have these or otherwise, I'm thinking getting back to keto felt so good for me anyway that it might be worth doing just for those benefits, regardless of whether it's PCOS, an insulin problem, something else or nothing at all. I will check those videos out!

Thank you all for the support - I needed someone to talk to, because I was going a little crazy in my head. I'm grateful for your advice and support, it's really helped ground me a little, and I'm feeling much calmer about it :)

Sending hugs
 

Butterfly

Sim Addict
Safety & Support
SF Author
SF Supporter
#9
I would speak to your GP. They can prescribe a drug called metformin, it is a diabetes drug but can be used for PCOS.
 

HappyKitty

•✮• SF's pet kitty, the cheerful and purest. •✮•
#10
I would speak to your GP. They can prescribe a drug called metformin, it is a diabetes drug but can be used for PCOS.
yea. there myths. like metformin won’t be for anyone though even if they have cravings. cravings and irregular period can come from many factor. and not all pcos patients is diabetic. it took me like them to have many investigations on me to get this diagnosis. it won’t be an overnight thing or diagnosis won’t come straight out from GP. like i said, this condition is heartbreaking. I’m almost always cried everytime I walked out of appointments and trip to ER isn’t occasionally anymore. but either way @EmB , don’t lose hope too quickly, the process won’t be pretty. do whatever it takes to safe your life. *hug
 
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EmB

Absolute Peach!
#11
I would speak to your GP. They can prescribe a drug called metformin, it is a diabetes drug but can be used for PCOS.
Yeah, I've read about this, and I would definitely consider it if this is the case.

yea. there myths. like metformin won’t be for anyone though even if they have cravings. cravings and irregular period can come from many factor. and not all pcos patients is diabetic. it took me like them to have many investigations on me to get this diagnosis. it won’t be an overnight thing or diagnosis won’t come straight out from GP. like i said, this condition is heartbreaking. I’m almost always cried everytime I walked out of appointments and trip to ER isn’t occasionally anymore. but either way @EmB , don’t lose hope too quickly, the process won’t be pretty. do whatever it takes to safe your life. *hug
So true, it takes a while, whatever it is - but I'm willing to go through that process, just get something sorted! I appreciate you being so supportive as well, you're a wonderful person, and I know how hard it is, so you offering me info on this and letting me know if I do get a diagnosis, what it will be like, is super helpful, it helps me feel prepared if I do, and less anxious about it all :) thank you.

Sending hugs
 

EmB

Absolute Peach!
#12
Hi all, an update:

I had my blood test on Tuesday. So it came back that I have normal testosterone levels, but the protein that binds to T is very low so I have lots of free T just lingering. My blood sugar also worked out as 41, which if 1 higher would be pre-diabetes. My GP said all of these point to an issue with insulin and PCOS, so I've been referred to an endocrinologist (well, I'm on the list), and she said she would organise an ultrasound to look at my ovaries. That's where we are going with that.

Also found out my mum has had a routine mammogram but was called back for a biopsy. That does not feel good at all.

Sending hugs
 

Innocent Forever

Still innocent!
Staff Alumni
SF Supporter
#13
Hi all, an update:

I had my blood test on Tuesday. So it came back that I have normal testosterone levels, but the protein that binds to T is very low so I have lots of free T just lingering. My blood sugar also worked out as 41, which if 1 higher would be pre-diabetes. My GP said all of these point to an issue with insulin and PCOS, so I've been referred to an endocrinologist (well, I'm on the list), and she said she would organise an ultrasound to look at my ovaries. That's where we are going with that.

Also found out my mum has had a routine mammogram but was called back for a biopsy. That does not feel good at all.

Sending hugs
Sending some hugs
 

Walker

Admin
SF Social Media
SF Author
SF Supporter
#14
yea. there myths. like metformin won’t be for anyone though even if they have cravings. cravings and irregular period can come from many factor. and not all pcos patients is diabetic.
She's not saying Metformin is for diabetics, she's saying it's an off label use of the medication commonly prescribed for PCOS. (It's used for both very routinely)
 

HappyKitty

•✮• SF's pet kitty, the cheerful and purest. •✮•
#16
She's not saying Metformin is for diabetics, she's saying it's an off label use of the medication commonly prescribed for PCOS. (It's used for both very routinely)
Hehe. I know that. Metformin is still not for every pcos as there’s quite no of types of pcos. It takes a while to get diagnosed, it takes a while to figure out the cause, it takes a while to get to rule out the type. its shitload. hiokk
 

HappyKitty

•✮• SF's pet kitty, the cheerful and purest. •✮•
#17
I just have to share a lovely story. I’m part of pcos community as well for encouragement on pcos positivity as this condition is really frustrating and heart breaking.

I have one pcos community member who suffered going through 3-6 miscarriages, she still gives birth in the end. My cousin who has pcos as me cause it’s family genetics, she smokes and still give births. One battled metformin side effects & can still have earned weight lost healthily.

I on the other hand, had severe psychological cravings too which my doctors used to mistakenly tested me for diabetes when I’m not.... But I didn’t get metformin, I get eating disorder. I’m still on a stage to figure out what type am I after being diagnosed and I’m able to get diagnosed after 6 years of recurring uti’s cause my ovulation is poor af, hence, weakening immune system. (idk how i survived those lol!)

We need to do lots of health tracking in order for the meds to safely work, even if those on birth control. Its alot of work. A lot of trial and errors. Doctors are always asking you a lot of questions, not depending on google all the time then you’ll have to see what meds works for you, you do the work, not always depending on doctors. What doctors say, aren’t always right. Doctor-patient relationship has to grow.

And .. Just because pcos gets metformin routinely, does not mean all pcos patients are the same. Does not mean all pcos patients gets metformin. Does not mean all pcos patients are diabetics.

Just sharing my pov. Hehe. I’ve just seen so many crazy stuffs and so many sad stories women had to go through.

@EmB if you want to be part of pcos community to vent out your symptoms, you can dm me. *hug
 

EmB

Absolute Peach!
#19
I'm glad you got set up to go to endo, Em. Hopefully that'll be soon. Keep us in the loop.
I just have to share a lovely story. I’m part of pcos community as well for encouragement on pcos positivity as this condition is really frustrating and heart breaking.

I have one pcos community member who suffered going through 3-6 miscarriages, she still gives birth in the end. My cousin who has pcos as me cause it’s family genetics, she smokes and still give births. One battled metformin side effects & can still have earned weight lost healthily.

I on the other hand, had severe psychological cravings too which my doctors used to mistakenly tested me for diabetes when I’m not.... But I didn’t get metformin, I get eating disorder. I’m still on a stage to figure out what type am I after being diagnosed and I’m able to get diagnosed after 6 years of recurring uti’s cause my ovulation is poor af, hence, weakening immune system. (idk how i survived those lol!)

We need to do lots of health tracking in order for the meds to safely work, even if those on birth control. Its alot of work. A lot of trial and errors. Doctors are always asking you a lot of questions, not depending on google all the time then you’ll have to see what meds works for you, you do the work, not always depending on doctors. What doctors say, aren’t always right. Doctor-patient relationship has to grow.

And .. Just because pcos gets metformin routinely, does not mean all pcos patients are the same. Does not mean all pcos patients gets metformin. Does not mean all pcos patients are diabetics.

Just sharing my pov. Hehe. I’ve just seen so many crazy stuffs and so many sad stories women had to go through.

@EmB if you want to be part of pcos community to vent out your symptoms, you can dm me. *hug
Thank you for the hugs, support, and positive experiences. I know it's not impossible to have kids with PCOS but I think that's bothering me a decent amount. Just the added issues with all of that stress me a little. I didn't realise how much I wanted kids until the idea came up that it may be harder to do so - I don't plan on kids for a WHILE yet, but it's still nibbling at me.

Otherwise I'm okay. It's nice to know the things I'm experiencing generally have a cause and so may be able to be managed. My doctor is reeeeally nice, and seems quite knowledgeable too, which I'm grateful for. She has also organised another blood test in 8 weeks as my vitamin B12 was low, so I'm taking supplements for that and seeing if that rises. She seems quite on top of things and she remembers things too - I don't need to remind her like I have had to do in the past. So it's the best situation I could be in, and there are definitely positives, so I'm trying to focus on those.

Sending hugs

Em
 

foreverforgotten

Quiet Observer
SF Supporter
#20
I have that too.. I would say it sounds like classic PCOS to me. I take Spironolactone for the excess facial hair growth and thinning hair.. (My doc monitors my pottasium on it, gotta be careful with it) and Metformin because I'm trying to lose weight and it helps the blood sugars. I think it definitely sounds like you have it. You should check out PCOS forums online too..it can be helpful *hugalso note, you don't have to have cysts to have pcos.
 
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