PCOS and type 1 diabetes - could I have been misdiagnosed?

[Julia08]

I was diagnosed with type 1 diabetes exactly a year ago and, now aged 21 have also just recently been diagnosed with polycystic ovary syndrome. I have had the symptoms of PCOS since I was about 14 and yet have only just been able to persuade my GP to give me a blood test which showed that I do in fact have PCOS.

All research I do into PCOS states that the condition leads to a risk of type 2 diabetes as both conditions are often seen in people with a genetic predisposition to over production of insulin, which leads to insulin resistance which then leads to PCOS and/or type 2 diabetes.

I have a feeling that my PCOS going undiagnosed for so many years has lead to the development of what is actually type 2 diabetes. Other reasons which lead me to suspect that I have been misdiagnosed and actually have type 2 are that I was an overweight child brought up on a high fat diet, my farther is also type 2 diabetic and I already have background retinopathy in my left eye which suggests I could have been walking around with diabetes for years and not known it.

Is there anyone out there with diabetes and PCOS?

 

[ma5on]

Hi Julia08

I was also diagnosed with PCOS but my diabetes consultant at the time wasn't that bothered saying conrolling my diabetes was more important......since that - nothing! I had been taking the pill up until a month ago so my symptoms were under control and I guess the lazy part of me was happy to let things lie and see how I got on.

I do know that Metformin is offered to PCOS sufferers as this helps increase Insulin sensitivity, and can also be taken alongside Insulin with Type 1's. Might be worth running tthis by your doc/consultant?

Also read that reducing (although not necessarily formal 'low carbing') carbs can help the PCOS (as well as the diabetes - bonus, like BOGOF!) Sometimes just cutting out the refined stuff like whitw flour, pasta etc really helps as thw insulin actually works with the food you eat, not trying to manage massive spikes and resistance as well......Just a thought...Also exercise will increase insulin sensitivity (and make you feel happier!)

The background retinopathy does suggest some form of diabetes (although I am NOT an expert!), however, studies again show that this can be slowed, or even reversed once everything is in check....

I would definitely see your doctor/consultant and try and push this forward - they have a duty of care to you but sometimes only really act when we kick them full pelt up the a55!!!

This website has a LOT of info...
http://www.verity-pcos.org.uk/

Hopefully they can give you some answers!!!

Good luck though and let us know how you get on.....

Ma5on xxx

 

[kareeta]

Hi Mason

I am very recently diagnosed with PCOS and I am Type 1. Had problems for years , and glad to finally have a name for it. I can't really offer any advice as I am learning myself, I did post on here last week and there does seem to be a few of us in the same boat. Hopefully they will be along soon

Karen

 

[Stod]

Julia,

You didn't provide the level of sugars when you were diagnosed. What was the range of sugars leading to your T1 diagnosis? Consistent 7 to 15 mmols will I think lead to T2 diagnosis, whereas consistent bloods of more the 20 (with Ketones) usually leads to T1 diagnosis. My BS was 32 mmols when I was diagnosed 30 years ago!!

 

[kokopuddle]

Re: PCOS and type 1 diabetes - could I have been misdiagnose

Hi Julia

I know your post was a couple of years ago now but reading it was like looking in the mirror. I was diagnosed with type 1 when I was 10 so 14 years ago now. I was also diagnosed with PCOS last year after years of fighting for a blood test. In the end it was my GP who sent me for the test after noticing my acne. It was confirmed after an ultrasound. All through my teens I had unexplained problems with my diabetes mainly around a certain time of the month. At one point I was in and out of hospital every month for around a year and still my consultant refused to do blood test to check my hormone levels stating and I quote "hormones don't affect diabetes" . Even now since its been confirmed he still refused to help in anyway claiming again and again the PCOS has no or little affect on diabetes. This is something I keep hearing over and over again from so called health professionals but find it increasingly hard to believe when I talk to other sufferes in the UK and abroad. I was even told that the problems I am having are "all in my mind" before I was diagnosed with PCOS. I am still struggling I have also been on the pill but find that after around 6 months that it starts to affect my blood sugars badly I have also been on metformin but that caused me really nasty stomach cramps. Both were prescribed by my GP not consultant.

I guess what I would really like to ask you is how you have gotten on since your post?

Thanks K