Thursday, March 13, 2014

Openly Open: T1D, PCOS, Hypothyroid &…… A Tiny Human???

I’ve been debating lately if I should write about this. I’ve thought about waiting until I’m actually pregnant, but then I probably would never get around to writing anything or even be able to remember timelines.  In the beginning when we started down the baby road I didn’t want to broadcast anything because I didn’t know how long things would take and what road it would lead down. Now, that we are heading in the direction that we are the more I think about it the more I feel like I should share for the sake of maybe someone else out there going through the same things. Maybe they will find this blog and it will help them to know they are not alone. For my own sake, maybe someone will see this and encourage me that I can do this, that I’m not being crazy or selfish trying for a baby…………..

I’ve touched base a bit in the past on my PCOS, polycysticovarian syndrome and my hypothyroid, but now that I’m going to be writing about this journey that we are on,  I guess to better understand the situation and how it all ties in with type 1 I should go over things….. If you are a man reading this beware, I’m not going to spare any details so you are now forewarned.

Way before I was ever diagnosed with T1D I’ve had issues with having a “normal” cycle. Too often, too long, too uncomfortable. When I was a preteen and early teen my mom was hoping that my system was just trying to get things normal and under control and that eventually things would work their way out on their own and I would end up with a regular 28 or so day cycle. That never happened. I started when I was 12 and by the time I was 14 it just increasingly got worse. I had been having what I thought was a period (I found out recently that’s really not the case, but I’ll explain in a bit.), every 2 weeks or so when at age 15 I bled for 30 days straight, no stopping. Mom took me to the doctor, I don’t even know what they put me on at the time, to try and stop the bleeding. Doctor said I was too young to go on birth control so they put me on some other hormone pill for a few months. That made things stop for a bit, but I remember that by the time I was 16 I was put on the pill for a few months and then taken off. That’s pretty much how things in my teens went. No blood work was ever done or an ultrasound, mom was worried, but a the same time we didn’t have health insurance for most of my teen years and since I didn’t necessarily seem to be bleeding to death or have severe pain other than severe cramps every few months my mom didn’t press for too much to be done especially since the doctors didn’t seem too worried. I had another month of torture when I was 17, went to another doc who put me on the pill for I think about a year that time and then took me off. I didn’t like the pill because back then the ones that I was always stuck on messed with me so emotionally I was a nut case and a half. Depressed, moody, angry, just a real fun person to be around. Early twenties I kept with the same thing, off and on different pills that I hated. Longer periods and hell. Exactly a year after being diagnosed with diabetes, when I was 26  I went to a doc that my aunt highly recommended. At this point in time, believe it or not, I had been bleeding almost consistently for 6 months straight, no joke. When I saw this doctor, Dr. Green who is now my OB/GYN, she was the tenth doctor I had seen about my issues in a 12 year time span.  I never even had to insist on blood work or an ultrasound being done. She was the only doctor that looked at me as a hurting scared woman and not like a three headed monster or as if I was delusional. She was the first doctor that seemed to believe me and that didn’t just want to put me on some sort of hormone and shoo me out the door. She was the one that brought up running tests and looking at my insides, I didn’t have to press for it or even bring it up.  When she saw the ultrasound, there it was! All the cysts from PCOS. Unfortunately only thing to do was put me on a BC pill. She listened to my concerns and how miserable I had been before on all the others and she worked with me to find one that would help, and we did. It was amazing!!! I had tried diet and things that I had read would help, but nothing ever had, only the pill worked and it was a beautiful thing. Fast-forward to about 4 ½ years later and going off the pill and trying to get pregnant. Dr. Green was pretty optimistic that we could get pregnant, I have believed her. After all, she is the only one who would ever do any kind of tests and didn’t treat me like a freak. In February 2013 we had a consolation with a perinatologist that she referred me to for the T1D, he was pretty pleased with my A1C and management, I’ve had a few follow ups with him since and kept in constant contact with his CDE to get tight control of my BGs as best we can. At the end of March 2013 I took my last BC pill and we officially started trying. Things didn’t go wonky at first. We knew that things might, especially considering how my body was up until I went on the pill, but we were optimistic that we would be pregnant before my body had a chance to act like a mess. Each month went by, nothing happened, no baby. For 4 months my body stayed on the 28 day on the spot schedule that it had for the past 4 ½ years that I had been on the pill. Then I was late, really really late. We were hoping and praying that that was it, it had happened………. It was going on 40 days since my last cycle,  I had taken 4 pregnancy tests over a 2 week period and all negative. I called Dr. Green’s office. Her nurse said those tests are accurate, she would see what my doc wanted to do. 40 days and no period not normal. She called back, they put me on some hormone for 10 days that would jumpstart things and then they would do blood work to see if I had ovulated. I started on day 10 of the meds, had a 12 day period and then it stopped. Labs were done, no ovulation. Next cycle was about 21 days later, okay, we are back on track kinda, so I thought. Checked a couple of other times for ovulation, and nothing. October I had my yearly, and I talked to Dr. Green about how I was starting to have 21 day cycles. She decided to try putting me on Progesterone to get my cycles to lengthen so that I would have a better chance at getting pregnant and staying pregnant. First month, that didn’t happen. I still had a period beginning of November, then 21 days later again. Trying to give it some time I didn’t call her right away, but then I had it at 17 days. Called, talked to the nurse, and of course this med could have reverse affects. Give it another go around and see what happens. Tried that and well, guess what?! I had another so called period 17 days later. Ugh! Called and talked to the nurse and this time Dr. Green was at a loss and had to tell me it was time for me to go see an infertility specialist. Oh joy!!! Merry Christmas and happy new year to me. Of course I was devastated, another doctor, another specialist, more co pays, more tests and no baby. It was the end of December when I made the appointment for February 27th.  We went to the appointment and thankfully we both really like the doctor. He was very thorough, he spent 1 ½ hours with us, going over both mine and hubby’s medical history, what tests he would run, our options for medicines for me to go on if all the tests came back negative for any imbalances like he believed they would. He made us feel like we were included in the decisions which was great, he didn’t just say this is what’s going to happen. He went over ultrasounds that Dr. Green had sent over to him, one of which was very recent. He said from looking at those that the lining in my uterus is very thin, it looks like nothing builds up, it all just comes out whenever instead of building up for a menstrual cycle, and lack of ovulation will do that. He isn’t even sure that I have ever ovulated. He was very optimistic that we will have a positive outcome, and we left the appointment with a game plan and feeling encouraged. I went the next day to get the blood work done that he ordered and then this past Wednesday went for me to get another ultrasound and for more testing for both of us. One of the tests that I should have gotten that day was a CF screening, but due to my health insurance switching over and issues due to that I had to leave without it. After a very stressful day due to those insurance issues and a new endo appointment that I wasn’t thrilled with, (you can read that here) and all the stress that circles this whole situation I received a call from the nurse that same afternoon that all my blood work and ultrasound came back looking great. I started meds Wednesday night to get me to ovulate so that’s where things are at with all of that.

How does any of this tie in with T1D? All these hormones are so tied together! Unfortunately they jack with my blood sugars and I never seem to be able to get a feel for what is going on due to the wonkieness. If I’m going high for several days straight at random times I wonder if I need to keep an increased temp basal setting on my pump due to highs because am I going to start in a week? I’m not seeing that as being the case. Everything that I’ve read or heard from my CDE on BGs and menstrual cycles does not jive with me therefore causing some real issues that I’m not sure how to correct due to the fact that I don’t know how long/many days the highs are going to last. If it’s going to be several days because I’m going to be starting, or is it in fact what I ate and I counted carbs wrong, or is it bad insulin or a bad sight. I’m praying to God that this new medicine will get things on track. Doctor seems to think that it will make me ovulate and I’ll have normal cycles. If that’s the case then that would help figuring out BGs at certain times of the month. Then again, God willing we get preggers right away, that’s a whole other rollercoaster ride! Wonky BGs and increasing thyroid meds and who knows what else. It’s a lot to handle, and I’m a mess internally.

Update to add since I've been writing this over the last 5 days... I got a call today from the nurse at the doctor's office regarding one of the hormone tests that they said was all good. Apparently the lab is now informing them that they screwed up and that one of the tests was done incorrectly. I have to go back to have my blood redrawn and tested. I already finished the ovulation meds for this cycle and I told the nurse that, she said that it won't hurt anything. Just when I was feeling sure about things.


  1. Thank you so much for sharing your story so honestly. This sounds very frustrating, but you found a good doctor who cares about his patients, and that's a very important thing! I wish more people would blog honestly like this, I don't have PCOS but know someone who does, and I'm sure your story helps others in your situation. Look forward to hearing more about this big "adventure" :)

    1. Thank you so much Maria, your words are very encouraging. It was a really hard one to write, but I'm glad I did.