I'm about to turn 19, but I've never had a period on my own. I've responded somewhat to regular birth control, but even after taking it for a year and a half to see if it would regulate my period, nothing happens still when I stop taking it. I've had an ultrasound on my ovaries, a chromosome test, a bunch of bloodwork...and my weight is definitely high enough to support menstration (I've gained over 10 pounds since the summer).
The latest round of blood work showed that I'm hardly producing any hormones on my own. My estrogen, FSH, LH, and thyroid levels are all very low. So my doctor thinks that my pituitary gland is not giving out proper signals, and I'm having an MRI done over my spring break. In the mean time, I'm taking birth control to give my body at least some hormones, and just dealing with the other symptoms (like weight gain...).
I just don't know what to think of this new development...what could make my pituitary gland stop working right? A tumor? My doctor wouldn't really tell me much until she could get more answers from the mri, but that's in 3 weeks and in the mean time I'm getting a little nervous over here. Any advice?
first thing is DONT PANIC. yes i know easier said than done. the pituatory is responsible for endorcrinal function in the body so any problem with it will lead to such a manifestation peripherally = not just a tumor. there are a few different types of pituatory tumor.
neurological symptoms of tumor include: frontal headaches and vision problems which progresses to unilateral blindness because the pituatory lies close to the optic nerve. double vision leading to head tilting and dizziness. seizures and dementia-like personality changes are also observed.
hypopituatoryism leads to breast milk being secreted in both non-nursing woman and also seen in men (galactorrhea). periods can become irregular or disappear. weight gain is also a symptom. excess hair growth, acne and mood changes also occur. because the gland regulates homostasis within the body, the symptoms are broad. at the moment your doctor has just organised an m.r.i. other tests to be considered if a mass is suspected are X-ray, CT and a carotid angiogram
there are a number of possible outcomes to this so please try to wait it out and not panic. contact your doctor and express your high (understandably so) anxiety levels...
finally, if i recall.. you suffered with an e.d for a while? this would also impact on circulating levels of hormones. but the best thing for the moment is to wait and see the results of the m.r.i scan.
You are an eating disorder patient, right? Your bio lists 5'4" and 120 lbs -- are you still at this weight?
In fact, by the looks of it, you are still restricting calories and over-exercising although you consider yourself "recovered". You get by on less much less than 2000 calories a day (which would indicate real recovery) and are currently at around 1300 calories a day?
Has your doctor been made fully aware of your eating and exercise habits? I get the sense she may be assuming there is no relapse of an eating disorder (based on your feedback) and so is naturally considering less likely possibilities such as pituitary malfunction.
Your current weight is not sufficient to support menstruation because your leptin levels can no longer rebound to normal despite a BMI of 20. You are also not at a recovered weight because you continue to restrict and over-exercise to maintain the current weight.
You are suppressing your metabolism (as you suspect) and are in the middle of an active eating disorder and all the damage it causes.
Leptin is a hormone that acts a gating hormone for all the ones you had tested: FSH and LH among others.
Leptin is directly linked to your fat deposits in your body. However, we know that for many recovered ED patients leptin does not return to normal levels despite being weight restored.
As such, many ED patients have to shoot for the high-end of the healthy BMI range just to attain leptin levels that they once had at BMI 20.
Before you have an MRI, you may want to ask your doctor to check your leptin levels and also be honest with her about your calorie restriction and over-exercise.
It may be that you need to be at a BMI of 23-25 to generate leptin levels that help trigger all the other reproductive hormones to function normally again, as well as bring the thyroid function back in line too.
Fidget84's information on pituitary function is correct and she is right.
While your doctor is being thorough in ruling things out, your issue is not likely to rest with pituitary malfunction given that your symptoms are also easily attributable to the need for further weight recovery to be completely free from an eating disorder that has persisted in a sub-clinical way for the past 4 years.
Hope this helps. Best of luck!
oops didnt read the bio.. jus remembered the name
Lena, i think you should be very honest with your doctor about the extent of your restriction.
Thanks for the concern guys, and then sound advice from the first post, Fidget.
First of all, my profile is in need of another update, as this is the first time I've logged into CC in many months. For the last 2 and a half years, for the most part I've eaten at least 1800 calories on an average daily basis, and maintained a healthy bmi on this caloric take. Starting about 6 months ago, my weight started increasing out of nowhere, and I did attempt to restrict for like a week (when I made the bio). I just gained more weight, and now I'm back to eating a normal amount and dealing with the gain. I'm 5'4 and 125 pounds now.
My doctor knows all about my eating disorder, which was 5 years ago. This is part of the reason that we've just been waiting for a period to happen on its on for so long. I had blood work done a couple of years ago, and my hormone levels were low, but not as low as they are now (also, not as many hormone levels were tested), which we attributed to my body just needing more time to adjust to having been at such an unhealthy weight when I was 14/15. However, after several years of being at a very healthy weight, eating enough calories, and taking birth control, my doctor decided that something else was going on, and when she tested my levels again and more extensively, she found results which she didn't think had anything to do with my history.
I didn't mention the past eating disorder in the post because my doctor wasn't concerned about it. That's the answer I had been given for the past 5 years. You had an eating disorder (for a few months, at that...), which is why you don't have a period. Sorry for the confusion!
What I posted still stands I'm afraid, and your physician may not be aware that your BMI is not high enough to support adequate leptin levels given your ED history -- it's fairly recent clinical information.
Happy to provide you with background data and clinical information if you need it.
You may need a BMI of 24-25.
Thanks, Hedgren. I was probably a little quick to defend myself and didn't focus on what was important in your message.
I will ask my doctor about leptin. She has already admitted that if the problem is not something that is evident on an MRI, then it's out of her hands and she will refer me to a specialist.
So low leptin levels could affect the production of many other hormones, not just those related to menstruation? Could part of the reason I've been gaining weight so easily have to do with my body trying to restore leptin levels? If these levels correspond directly to fat deposits, should I be aiming for a higher body-fat percentage rather than just going by BMI?
I have a pituitary gland tumor. it's a prolactin-secreting tumor~prolactinoma is what the offical name is.
i was a professional dancer (so lots of ED issues, weigh-ins, criticism, you name it) and suddenly my weight rose. a lot. quickly. and my belly and boobs were swollen. i looked pregnant, although i wasn't. i went to the doctor, and when he asked me about my period, only then did it dawn on me that something might actually be wrong. i'd lost my period 2.5 years prior to this, and i thought it was because i'd been on BC, then gone off, then gone back on. my body was rather confused!
after a series of blood tests and three MRI's on my brain, they determined that my tumor was only 3mm in size. it only showed up on 1 MRI; it's so small, it's barely visible! but they know it's still there based on my bloodwork.
i take bromocriptine 2.5mg twice a day. one with lunch, one before bed. i've gone back onto BC to regulate my periods, because once they finally came back, the cramps were sooooo bad (it'd been so long without one!) that i was laid up for days until they passed. it's been just over a year of medicating myself and things are finally back to normal. i see my endocrinologist every 6 months and have bloodwork done every 3 just to make sure there aren't any changes. after 1.5 years of regular bloodwork (with the meds) i can go to every 6 months, having a yearly MRI done.
*there is a surgery that can remove the tumor, but infertility rates are high. i'm 32 and want to have children, so i think i might have the surgery after childbirth. but there is that option. i actually have a friend who did it; she's fine, but she probably won't be able to have children. personal choice.*
i know you must be scared, but i can honestly say, don't be. or try not to be. it WILL be fine!!! just be honest with your doctor and don't do any research online until you know for sure, and even then, don't do it!!! sometimes the information on the web can be too much for us to digest! if your doctor isn't concerned, then neither should you!!! good luck!!!
I just wanted to say that I think Hedgren has no idea what she is talking about. I want to see her medical degree because I think she has no right to tell you that at 5'4" and 125 pounds, you're weight is not high enough. That's ridiculous. If you're well within a healthy BMI and your doctor is not concerned with your weight, then I would not listen to hedgren. I was very angry with her post.
I had a very similar situation when I was 19 (I'm 23 now). I did not get my period for 9 months. I had an MRI, bloodwork, thyroid tests, and a bone density scan. Everything was normal except for the bone density. Since my body had not been producing estrogen, my bone mass did not build up and I was diagnosed with osteoporosis. I, too, was placed on birth control to get my body to create a period. I was on BC for a year and a half, and now I get periods on my own. I also lift weights and take additional calcium. My bone mass has built on its own and I no longer have osteoporosis, but osteopenia, the precursor to osteoporosis. While not ideal, my body is in a much better situation. I also have a family history of osteoporosis so I'm sure I would have gotten it anyway at some point.
Try not to worry. Added stress will only acerbate your problems. It sounds to me like you are taking very good care of your body and doing all you can to solve this conundrum with your period. My situation was very puzzling, since after a year of testing, my doctors could not figure out why my body was not producing estrogen (even after an MRI revealed my pituitary gland was functioning normally).
I know this post is very late coming after your original one, and I would like to know how you are doing now.
I am definitely not a doctor or anything, but this is an interesting post to me. I was told I had a pituitary problem a long time ago, but I was so young I hardly remember it. (~10 yrs?) What I do remember is that I had to take a pituitrophin supplement, which was explained simply that it would help me grow correctly. I hated taking it because at the time I thought I should just grow to whatever height I was supposed to be, but I am completely fine now. Since you say you are having pituitary problems, I wonder if you have ever heard of this supplement or been told that it can't help? Maybe they don't even give it to people anymore for all I know.
I think I only took the supplement for 1 or 2 years. My period didn't start until I was almost 16, and I am now 5'3" tall. When my period did finally start it was very sporadic, but heavy until the first time I tried birth control after 19 (depo provera).
At the same time as the pituitrophin I also took selenium supplement because my brother was taking that and we had it around, so we both took it.. didn't seem like it could hurt.
I am hoping to hear are doing well now.
Hey Lena - How did it go. Did they figure out whats wrong..Am in a very similar situation with symptoms and in the middle of blood work / mri etc.