MustangGurl

Hi Ladies,

Have been lurking for some time but wasn't ready to post just yet as its taken me the past year to get an accurate ( I hope?) diagnosis. Now that I have a better idea of just what it is I have I can finally introduce myself. I apologize if this is really long.

I am a type 1 ( autoimmune, insulin dependent) diabetic. I was not diagnosed until I was a few months shy of 17. However I have always had some minor androgen issues.

I started my period at ten and also started to get pubic and under arm hair pretty early on. I was never crazy hairy as a teen, but I did have to shave more often than others and had this stubborn patch of neck hair ( which i would shave) and some nipple hairs which i would pluck. Wasn't a big deal and I figured that it was the norm as there were some hairy women on my mom's side.

My periods were always very normal - like clock work. Never had any issues at all until I started hormonal birth control at 19.

Within a years time I blew up from 130 lbs max to 170lbs. I was miserable on the pill so I switched to the Mirena IUD. IUD seemed better but I still continued to gain weight. Also after a few years on the IUD the crazy chin hair growth started. At first I could keep up with plucking it but over time it got to the point to where I could not. I got a prescription of Vaniqa from my regular doc. The vaniqa helped slow down the growth a a little bit though not as much as I would like.

Move forward in time a bit. I am now on my second Mirena and currently 183 lbs. At one time I got up to 203 but with some strict low carb dieting it dropped down and I've been able to keep it between 175-185. Mirena is great except I am one of those women who do not have periods on Mirena. I may get a slight bit of spotting once a month or so that I would assume is my period.

I started seeing an endo for my Diabetes and complained to him about the crazy hair growth. He did an ACTH stim test and told me based on the results I had Late Onset Adrenal Hyperplasia. I believed him as the symptoms all matched up. He wouldn't treat me saying that I couldn't take steroids as they would make my blood sugar go nuts. He said I would have to treat each symptom.

By this time i had HORRIBLE cystic acne all over my back and my already fine hair had been falling out and getting thinner for some time. He prescribed me spironolactone 100mg a day and sent me to the derm for accutane. ( I also want to add my father who is in his 50's to this day has HORRIBLE cystic acne and had early balding - so I am thinking I got some of this messed up genetics from him)

In the meantime I realized my ACTH stim results were not indicative of LOCAH. They appeared to be a more rare form that had never been confirmed via genetic testing in an adult woman. I was given an article by a Dr who was a specialist in this field that stated the above and said it was PCOS. When I asked my endo which was it PCOS or LOCAH he basically said what did it matter they could both cause Poly cystic ovaries. I was upset being it does matter as both have diff treatment options and I am feeling like a miserable mutant. To have something wrong and not know what it is is not pleasant.

I finally got to see the reproductive endo thats a specialist in androgen disorders last friday. He told me that I dont have the adrenal thing (LOCAH) and what I have is similar to PCOS. Basically I guess I have the right genes and those combined with my intensive insulin therapy have landed me in this mess.

Basically the insulin that I inject since I dont make my own is stimulating my ovaries to produce androgens. He upped my spiro to 200mg a day ( which im sort of freaked about) and did a pelvic ultra sound. I have cysts on each ovary but they are small and not polycystic. There was one that was more large but he said it could be from ovulation? I am supposed to come back to see him in 6 weeks to see what has happened to that cyst. He also gave me labs to complete as soon as I start my period. However this is going to be trick as again I may spot ( though im sure this would be my period) a little but I dont always notice it.

Anyway I am sort of confused on what similar to PCOS means. I also find it intersting that I had some minor androgen symptoms before I got diabetes yet he says this could be from the diabetes? In all honesty the hormonal birth control is what did me in. It caused me to gain all this weight and thats where the problems began. My underlying condition just went nuts.

I am so sad because hubby and I want to TTC in a few years. In the meantime i need to lose weight but im scared that that wont "fix" me.

Btw I googled type 1 and PCOS and found some very interesting articles. It wont let me post links because I am a newbie but if you google type 1 diabetes and PCOS the articles will pop up.

Objective: The purpose of this study was to determine the frequency of PCOS and PCOM in women with type 1 diabetes mellitus (DM1).

^{Conclusions: A high frequency of hyperandrogenism, PCOM, and PCOS is observed in DM1, which appears to be associated with intensive insulin treatment.}

MustangGurl

Verajx

You got a IUD without ever being pregnant before?
Can you say malpratice?

I am type 1 diabetic and I have PCOS, I just have to manage it with meds and shave, except hows your blood work?

Are you seeing a RE?

__________________

MustangGurl

Hello

Actually as far as I know nulliparous women can and do use the IUD. I believe the concern is that if you have not carried a child to term you have more of a chance of expulsion. Im very luck in I have not had any issues at all with my IUD's. I had the first for 5 years switched it out for my current one which I am 2.5 year into.

My labwork seems pretty good. A1c of 5.8, cholesterol and everything normal. My diabetes endo put me on simvastating as a preventive measure since my levels were normal but right at the cut off for diabetic patients.

My free testosterone was elevated and upon ACTH stim my hydroxypregnenolone. However I still need to have the lab work done with the new doc which is a RE. I am supposed to have it done when I think I am on my period. I say I think because with my IUD i only get very light spotting once a month if that.

Have you read those medical articles I mentioned? Google PCOS and Type 1. Its pretty interesting. How long have you known you had PCOS?

Ps. Are you on MDI? or the Insulin pump?