Hello, I am new here. Here is my story:

Discussion in 'Talk to FertilityForums.com' started by teresaunseen, Feb 10, 2013.

  1. teresaunseen

    teresaunseen New Member

    Um, I've never really joined forums before...so I'll just get to the point. Well, here goes:

    I feel like I do not have control over my own body. I have no idea why I am like this, and I feel like no one really understands. I don't know anyone else around me who has problems like I do.

    I know this is a site about infertility, and I would like to have a baby some day, but not right now. I stumbled upon this site by googling "high prolactin levels with normal mri." I am just looking for people who have the same problems I do.

    Heres how the problems began:

    Well, for as long as I can remember I have always had an irregular period. When I was a teenager, I never thought that I might not be able to have a baby, or it didn't sink in.

    I remember when I was 14, I was so scared because my period would not come on but every 3 months. I knew that this wasn't normal. What made it even more awkward is that I was raised by my dad, and my "mother" has never been in my life. So I had to ask my dad to take me to the doctor. He called a gynecologist and made an appointment. Now me being 14, I was very scared, I didn't know what to expect going into the doctor's office. I had some lady, and I remember sitting in there waiting and when she came in she just asked me a bunch of questions about my period. She told me that i could get cancer if my period didn't come on or something of that nature. She gave me two options, i could take birth control or take some pill that will make your period come on. Well at the time I thought birth control would make a woman infertile, so i chose the other pill. I was prescribed these white pills, and I took a blood test that day as well. Well, my dad was taking all the calls from the doctors and what not, as I was only 14. The blood test came back and I went to the doctor again, and the lady said i was not producing enough female hormone...whatever that means. She then referred me to get an MRI. Well I did that, and I remember I went in this scary dark machine, that made all these scary noises. It was horrible.

    A week later the results came back normal. My dad at this point was irate. He, being a single parent, did not like spending all this money at the doctor when it appeared nothing was wrong. So I'm not sure if I was supposed to go back to the gyno, but I remember they wanted me to get another MRI the next year and my dad was like "heck no your not going", so I didn't go. Well, the white pills seemed to be working for a while, my period was back to normal for a while.

    I only remember one time where my period hurt so bad i thought i was going to pass out. I was in a math class in high school, and i had a male teacher. I was hurting so bad I felt dizzy. I had to ask the male teacher for a pass to the bathroom, and it seemed like an eternity for him to write it. Ugh, finally I was at the bathroom, and I just sunk down on the dirty floor, hurting bad. I stayed in there the rest of the class. It never hurt that bad ever again.

    Another minor detail is I remember in high school, I became obsessed with getting on the internet at lunch, and for a few years, I wouldn't eat lunch, I wouldn't eat until I went home because I used my lunch break to get on the computer. I was at my skinniest at this point of my life. I did this until one day I almost passed out at school, I almost blacked out but I got up and made it back to a classroom to lay down. After that i started eating lunch!

    Well senior year, I started working at mcdonalds. This is when my weight problems started. After I graduated I didn't go straight to school, I worked at McDonalds for 3 years, and I was so poor, but I didn't go hungry because I always had something to eat. I wasn't really paying attention to my weight. I didn't really care.

    Eventually enough was enough of that place and I found a new job working in a factory. My period was still irregular but I didn't worry about it much.

    My weight was at 200 lbs at this point.

    Well I didn't realize anything was wrong until last year my period was being irregular again, coming on every 3 months. I went to my new gyno, a man, and got a blood test. I also started taking birth control to make my period come on. The blood test revealed elevated thyroid levels, so he started me on medication for that and referred me to an endocrinologist.

    Now, in my town, there is only one endocrinologist. I had never heard of this type of doctor before. When the nurse on the phone told me had i ever been to an endo, i was like "no what's that?" and she told me it was a doctor that dealt with kidneys. I thought, "what does my kidneys have to do with irregular period?" Boy I had no idea what I was about to get into. I had a choice to go to the one in town or go to one 2 counties away. I chose the one in my town!

    Well, I went to the endo, and he upped my dosage of thyroid medication (after seeing results of a new blood test). That was a normal visit. The next visit was when all the drama started to begin.

    The next visit was when he laid it all on me. I hadn't lost any weight, so he threw that in my face again. And then he told me he was putting me on metformin to help me lose weight. He upped my thyroid medication again.

    I only lost 10 pounds from the metformin. I read on my paper from the previous visit that i had high glucose. He didn't explain that to me in the visit, just said he was prescribing the metformin to help me lose weight. Correct me if i'm wrong but isn't hyperglucose type 1 diabetes? He was happy about me losing weight.

    I had a few visits of him just upping my thyroid and now all of a sudden he started talking about my prolactin levels are still high and he constantly asks me am I taking my thyroid medications. What does prolactin have to do with thyroid medicine? Prolactin comes from the pituitary, which he didn't even explain to me, I googled. Well eventually it came down to me having to take an MRI, which i did last week. Haven't met my deductible yet for my insurance. Well the MRI came back normal.

    So why are my prolactin levels still high? This is what I will ask when I go.

    My doctor is a very busy man. He sort of gets on my nerves. I feel like just a number. He will come in, not even say hi, and its like he wont even try to understand me. I know he has a million patients because he is the only endo in town. I can't afford to drive all the way to another doctor really. He comes in and looks at the computer and then will not really explain things to me. I end up googling stuff to find out. I get a print out at the end of each visit, and there will be things on there that he didn't tell me about, like symptoms of pcos and pituitary hyperfunction. Like, all he talks about during the visit is eating healthy and losing weight. He doesn't explain things to me. I remember he asked me is there a history of hyerthyroidism in my family, and I told him I don't know. Its like he didn't want to take no for an answer. He doesn't understand that families are dysfunctional. I don't know my mother or anyone on that side of the family, and im not close to my dad's family, neither is he really.

    I try not to make excuses, but he don't understand how hard it is to quit cold turkey and stop eating junk and drinking sodas. He talks to me like I can just quit and lose weight. I have tried a million times to start exercising and eat healthy foods, but I feel stressed and soda and candybars make it better.

    I am currently enrolled full time in college, 5 classes (so i can keep getting financial aid) and working fulltime...I don't really have time to exercise, but I try to make small changes, like parking my car far away so i can walk.

    I didn't realize I had so many problems, and I feel like I don't understand, how do I get the doctor to stop treating me like a number? I cant afford to go far away to see a new doctor.

    I feel so lost and like i have no control over my own body. I feel like, since when did it come to all this? Why can't i be normal. And i realize that it will be hard to have children most likely. By the way, my endo also always asks me each visit when I am going to have children, and i always tell him not now, i mean, it says on his computer i am taking birth control!

    I guess I'm just looking for some peice of mind. I have always been the only girl in my family, and the only girl I know who has these kinds of problems. Its like i have to just sit here and think about it myself and no one understands.

    *sighs*

    :confused:
  2. floorbyfloor

    floorbyfloor New Member

    I have similar health concerns...

    Wow, I'm so sorry that you have so much going on and you can't find good doctors. I have VERY similar health conditions as you, but I have fantastic doctors. Before I get into the heatlh stuff, can I make a suggestion? I have had health problems all my life, so I have had some bad doctors along the way. One way I've found to deal with them is to start a list of questions/topics that I want to talk about with the doctor at my last appointment. I keep it close by at all times so if questiosn pop up I can jot them down. Sometimes I rewrite the list to be more concise before I have my appointments. I've found that this way I never forgot what I want to ask my doctor, even if they're a doctor that likes to get me in and out of there. I think my doctors like that they know I'm going to bring my list every time, which shows I am being proactie on my health. Plus, they can just sit down with me and quickly go over each question. This seems to take less time than if i went in unprepared and didn't have any questions in particular that I wanted to discuss. This may help you a lot.

    As for the Metformin, that is for diabetes, but it's for Type 2 diabetes, not Type 1. Type 2 is the kind you generally get from weight, lack of exercise, or advanced age (although not always). Type 1 is the type that there is no known cause for at this point (only about 25% of cases are genetic, the others, who knows). In Type 2 diabetics, your pancreas still produces some insulin; in Type 1 diabetics, the pancreas has totally stopped producing insulin and you MUST take insulin, there is no other treatment for Type 1. With Type 2 a lot of times you can avoid having to take medications (like Metformin) by losing weight and exercising (but again, not always). FYI I have Type 1 diabetes.

    Oh, and an Endocrinologist is not a "kidney doctor" so that nurse was wrong. An Endocrinologist deals with disorders of the endocrine system (in other words, basically deals with disorders of the various hormones in your body). Prolactin, thyroid, and insulin are all hormones, which is why your Endocrinologist is taking care of these issues.

    Similarly to you, I also have elevated prolactin levels, but no pituitary tumor. My Endo. said that sometimes some people just have elevated prolactin levels without a known cause, but it's important to get periodic MRI's to make sure that you don't just have a pituitary tumor that is too small to be seen on an MRI that is growing. I should note, I also had irregular periods all my life. I didn't get my first period until I was 17, and only had 1. I didn't get my 2nd period until I was 19. This was probably related to my prolactin levels. I easily get monthly periods with the right medications though.

    Also similarly to you I have a thyroid condition. I have hypothyroidism, which means my thyroid doesn't produce enough thyroid. I am on Levothyroxine for this. It's a very safe medication (even in pregnancy). Your post said you are making too much thyroid, but I'm guessing you actually aren't producing enough if you are overweight. People who produce too much thyroid are generally SUPER thin (although not always once they get it under control). It's more likely if you have Type 2 diabetes and elevated prolactin levels that you have hypothyroid, meaning you don't produce enough thyroid.

    So pretty much all of your health problems stem from your endocrine system, which is somewhat common for people to have multiple issues with their endocrine system rather than just 1. It is VERY important that you keep seeing your doctor because if you don't, I PROMISE you, it WILL get worse. I'm not trying to scare you, but endocrine problems shouldn't be ignored. They are VERY easily treatable, but you have to make sure you do the right things.

    I know that you say you are having a hard time losing weight, but you have to. Metformin isn't a weight loss drug either. All Metformin does is make your blood sugars better, which prevents your diabetes from progressing. I'm totally not trying to harp on you or anything because even though my diabetes is different than yours, I also have a hard time losing weight because of it. Perhaps you can ask your doctor to give you a referal to a dietician. This helped me a lot, and I can proudly say I am not well within my suggested BMI for my height and weight. I wasn't always though. One thing my doctor said to me that helped me too was that diets don't work, you have to commit to lifestyle changes. In other words, you can't give up certain foods for a short period of time, lose the weight, then go back to your old habits. You have to permanently choose to eat better. Now, that also doesn't mean that you can never have cake or pie again, it just means you have to have it maybe once a month instead of once a week.

    I questioned whether I should include this next thing I'm going to say in my post or not, because I don't want to scare you, but decided I would because this was something that meant a lot to me and my health. Please don't think this will happen to you, and know that you can 100% avoid this if you take care of yourself. So basically when I was 14/15 I didn't like to take care of my diabetes the best I could. I gained about 20lbs. and wasn't monitoring much of anything with my health that thoroughly. Welll, at the time my best friend's father was just about to retire. He and his wife had saved all their lives to build a porch on the back of their house and put in a pool. Soon after those were built, he retired. About 3-4 months after retiring, her father was diagnosed with Type 2 diabetes. He was older, so he was kind of set in his ways and just didn't want to deal with it, so he didn't. In turn, this made him very sick and weak. Well, one summer day he ended up stepping on a nail that wasn't nailed down properly on their newly built porch. He ended up with a bad cut on the bottom of his foot, but he didn't think much of it. Well, since he wasn't taking care of his diabetes, he ended up with nerve damage in his foot, so he couldn't tell the cut was getting infected (I encourage you to look up the possible effects of having diabetes that you don't take care of). Finally his wife noticed how bad his foot looked and they went to the doctor. The doctor told him it was infected and gave him medicine, etc. to try to treat it. Well, he now knew he had a bad cut on the bottom of his foot, and even though it was infected, he woudl pick at the scab. This ended up making the foot get more infected, to the point that he ended up having to get his foot amputated. Unfortunately, even after his foot was amputated, they hadn't gotten all of the infection, as it had spread up his leg (btw diabetes makes it harder on your body to heal if it's not well controlled). So then they tried to treat the infection in his leg, but it was too far gone, so they amputated his leg. Now his health was really bad because of the infection, and he still wouldn't take care of his diabetes, so his kidneys became infected (which happens to diabetics who don't take care of their blood sugars). So now he has to be put on dialysis, and he's even weaker. Sadly, the infection now was running rampant throughout his body and his other leg ended up getting amputated. STILL he didn't take care of himself and withing 1-year of retiring and being diagnosed with diabetes he was dead. I couldn't believe it. This was the kick in the butt I needed to start to take care of myself because with diabetes, you can't turn back the clock. Once the damage is done, it's done. I didn't want to be 40 with failing kidneys, neuropathy, blindness, etc. and look back and say, 'if only I'd taken better care of myself when I was younger.' From that point forward, I took the best care of myself that I could. I still indulge in treats (food and otherwise) once in a while because I like to live life, but it's a treat. It makes it more special that way too. I feel good and I don't have to worry about going blind or losing my feet to this disease. Again, I hope this doesn't scare you, but rather encourages you to take action on your health. Since you don't seem to have good support from your doctor, I would suggest contacting your local American Diabetes Association for resources. They're great.

    If you do want to have chilldren, it is IMPERATIVE that you take the best care of your body now as you can. If you don't, you can prevent yourself from being able to have a successful pregnancy in the future. However, if you lose a little weight and take your meds. you shouldn't have any worries about fertility. I always knew I wanted to have children, but knew it would be hard (literally the 1st question out of my mouth when I was told I had Type 1 diabetes was, 'can I still have children?'). However, by taking care of myself and having my diabetes, thyroid, prolactin, and Fibromyalgia (something else I have, but is not related to the endocrine system), I am now happy to say that I am 5-weeks pregnant. I had to see a fertility doctor, and work very closely with my other doctors, but a lot of that was mainly just to make sure I was healthy and okay to have kids (although it did take us a while to get pregnant).

    I know it can be hard to have all these health concerns, but there's a lot worse things to have. Plus, having Type 2 diabetes is a LOT easier than having Type 1 as long as you take care of it (otherwise you may lose all ability to make insulin too, which would make it similar to having Type 1). If you have any questions, please feel free to contact me. I know it's always nice to have support from people who are going through what you are.

    I'll end by saying that you CAN live a totally normal life if you put yourself in the driver's seat of your health. Don't let doctors short-change you, and insist that you get the care YOU DESERVE.
  3. teresaunseen

    teresaunseen New Member

    thank you so much for replying. It makes me feel better.

    But I wonder why my doctor wouldn't just come out and tell me that I have diabetes. I am going to make a list of questions like you said, and the first question is going to be do I have diabetes.

    You are right I am going to have to be prepared and force him to listen. He did actually say he was going to refer me to a dietician but when I got out to the billing people the woman asked me did I want to be reffered or something..and I said no because I wasn't sure if my insurance would cover it, and they don't unless its for diabetes or something.

    So i guess i will try to get him to refer me again. And i will see if he can make it be for diabetes treatment so my insurance will cover it.

    I just hope he will get me on the right thyroid medicaiton this time. He claims I have hyperthyroidism. And im on the medicine to lower the thyroid. So i will ask him how is it i have the prolactin and weight gain when i have hyperthyroidism.

    I am also very constipated and i hope he will get me a prescription for suppositories because i have a bad anal fissure.

    Your right, I need to take control instead of sitting here and wondering why me.

    Its just, the exercise I dont know how I am going to incorporate it into my day, like an hour a day, because I am so busy with work and college.

    I have started doing little things like parking far away, and taking the stairs instead of the elevator.


    Reading your reply has made me realize that I need to take control. I will let you know the update of my doctor appointment. I go on monday. He is going to talk junk to me probably because I gained 2 pounds.

    I think I am going to start using my fitness pal app again. I have always tried using it then give up. Its very hard when you have to go through this alone. But it helps to have sites like this to have support.
  4. floorbyfloor

    floorbyfloor New Member

    I'm glad that I could help. Definitely let me know how things go. I'm sorry that you hae so few options for doctors where you live. I know how hard it is to take control of your health when your doctors won't give you the support you need. Perhaps even if your doctor won't give you the official diagnosis, maybe he will give you the pre-diabetes diagnosis (which may actually be the diagnosis). Your insurance would likely still cover a dietician that way because they would (or should) know that a proper diet is the best way to fight type 2 diabetes (and prevent pre-diabetes from becoming diabetes). I know a lot of times when my doctor's office submits for a referral to a dietician or another type of doctor, they also take care of the insurance issue for me. In other words, they contact my insurance ahead of time to make sure it's covered. If your endo. won't do that for you, then once you get the referral to the dietician you can ask the dietician's office to make sure your insurance will cover it before you actually have the appointment. Most doctors and dieticians will do that becuase they want to make sure they are going to get paid. Let them know that you can't afford it otherwise. Just because you get the referral doesn't mean you HAVE to go if your insurance won't cover it, ya know?

    As for the weight thing, I've also been in the situation of gaining a weight when I was supposed to lose it. I try to listen to what they're saying, but at the same time I try not to stress about it too much before appointments because then I tend to cancel appointments that I needed to go to, etc. Once I started listening to what they were saying but also knowing that the doctor doesn't know what it's like to live my life, guess what? I was able to take the weight off. Of course, that wasn't the only reason I had extra weight on me, but it helped not to stress about what the doctor was going to say. I think they kind of have to say those things, ya know? When I finally got my thyroid under control and had a doctor I really liked say to me that I had to stop focusing on dieting and instead focus on lifestyle changes something finally clicked. The main way I lost weight was to make changes like you are (parking far away, never taking elevators, etc.) and focusing more on what I ate (eating whole grains instead of floury stuff, eating brown rice instead of white, eating more fruits and veggies) along with allowing myself to have foods I enjoyed every other day (but only 1 serving of sed food) I lost the weight. I'm not a toothpick, but my BMI is a 22, which is healthy. Honestly, I think that's the best way to lose weight. I still want to eat the foods I like because I do enjoy foods, but I've found I'm just as happy if I have 1 bagel a week and cookies once or twice a week as I was when I would pig out on them. Changing my relationship with food after working with a dietician was a change that has stuck for years now. Also, exercise through lifestyle changes doesn't even seem like much work, but it makes a good difference. Once you see a dietician and your meds are adjusted properly, I bet the lifestyle changes you are making along with the diet changes will help you lose weight more easily then you'll even realize. Also, you sound like you're really busy, and that is probably the best thing I had going for me with losing weight because I wasn't just sitting around snacking and thinking about food.

    I wish you the best of luck and hope that you get your health stuff taken care of in a way that makes you feel like you are being treated properly. You really sound like you want to be healthy, and once you are, pregnancy in the future and continuing health will be much easier.
  5. teresaunseen

    teresaunseen New Member

    Well I went to the doctor and he didn't fuss me out like i thought. He asked me: "what happened to losing weight, the holidays?" and i nodded and he just casually said that spring was approaching and for me to try to lose weight then.

    He also gave me another prescription to help lower my prolactin level...called cabergoline. Man that pill makes me tired as crap. I learned the hard way, i took half a pill before work and I was so tired.

    He also upped my thyroid medication again, this time to 88mg.

    I still feel tired. And i noticed that alot of hair is in my hair brush. I can't wait til he gets my medicine right so i can feel right.

    I've also been super constipated or something. I asked the doctor for suppositories and he told me to take colace. I did but i still feel constipated. I dont know if i have an anal fissure, or a hemmroid. The last time i had a bowel movement it felt like it wouldn't come out and i was massaging my stomach and rocking back and forth to get it out lol.

    So that is another problem i am worried about on top of all the other crap.

    *sigh*

    I also feel like i can't concentrate in my class and i read online that trouble concentrating is a side effect of hyperthyroidism.
  6. teresaunseen

    teresaunseen New Member

    oh yeah i forgot to add i also asked the doc do i have diabetes and he said no, he said i was taking the metformin for poly cystic ovary syndrome. He said it will help prevent diabetes dowm the line. how the heck did i end up with PCOS? idk.
  7. floorbyfloor

    floorbyfloor New Member

    I'm glad that the doctor didn't stress you out. It's often a lot easier to lose weight in the spring, like your doctor mentioned, so I wish you luck with that. I know it's a lot easier for me to do things like park my car further back in the lot when it's nice out. Like you mentioned previously, making small changes like that will help a lot with weight loss.

    I'm also really glad you don't have diabetes. As for the PCOS, if you lose weight, that will often make the PCOS go away. Often times, PCOS is associated with being overweight, but it's not neccesarily the cause. A lot of times PCOS can cause weight gain, and vice versa, so it's kind of this horrible cycle. However, being on Metformin can often help with the weight loss, which in turn helps the PCOS symptoms go away, and vice versa.

    Taking Cabergoline can make you tired at first, but it goes away. I was on it until I got pregnant. If I wasn't on it, I never would have gotten pregnant because it's next to impossible to get pregnant with your prolactin levels being high. I generally took the Cabergoline at night, which was nice when I was first on it since I have problems sleeping and it did make me sleepy. In the end I wound up only taking 1/2 a pill once a week because my levels normalized so much.

    Thanks for the update. Again, I'm really glad that your doctor didn't stress you out and it sounds like you got a lot of your questions answered. If you have anymore questions, I'll keep checking this thread. I hope you stick around this board...there are a lot of great women on here who can offer a lot of great support. I wish you the best with everything, especially your health.
  8. ankit

    ankit New Member

    Your story is very sad, But you have to maintain hope. I'm suggestion you a clinic First Step IVF, who is best in fertility and reproductive health issue problem and here you will find the experienced doctor and these have high success rate.
  9. calisy

    calisy New Member

    Yours is such a long story indeed. Sorry for what you have been through. Having parents that are not always here for you can be complicated. Now that you were raised single handedly. They say that a daughter always needs her mother in some point I life. I do not know of what happened with your mother but I can say you have made it all that long. It is too late to quit now dear. I understand how complicated the situation seems like. But do not give up. Keep on going to the doctor. He is the o0nly one ion town so I guess he is busy. And since you cannot afford to g0o off town you have to tick to that one. All you have to do it to try hard and accomplish whatever he tells you. He has no time to be sympathetic with you. He is just doing his job. And from the explanation, he seems a busy doctor too. Since we cannot change his schedule you have to work on yourself. You got only yourself to adjust and not the doctor. So work to lose the weight. Then when you will be financially goo, you can try other clinics. I understand how hard it is going to be for you. But take heart dear. I hope all these will one day be of the past.

Share This Page