Saturday, April 5, 2008

My Hypothalamic Amenorrhea Story... the long version

I started thinking about trying to conceive towards the end of my graduate studies. I had a job lined up, and wanted to get pregnant after about three months, so I would be there for about a year before going on maternity leave. It’s funny how when we first start thinking about it, how we imagine that we can plan things so precisely.

I was already exercising what I now know was a lot; playing volleyball, ice hockey, biking, playing squash, lifting weights – all things that I really enjoyed doing. Then I read somewhere that fertility would improve with weight loss, and a group of my friends was going on a diet, so I decided to join in. I had little love handles, and had always felt I was a bit overweight (136-ish, at 5’5.5”), so I thought I was doing a good thing. Getting healthy. Preparing my body for pregnancy.

I started limiting myself to 1500 calories a day. And didn’t add on any extra for all the exercise I was doing – in fact, I found I was pleased with myself when my net calories each were around 800. I started losing weight very quickly – in fact I was down about 12 pounds in a month. I found losing weight quite addictive – I loved the way I looked, I loved the feeling of control. So I kept going. All the way down to 120. By the time I got there, we had decided that we were ready to start trying to get pregnant, so I stopped taking the pill.

My primary care doc had told me the year before at my annual checkup that it was quite normal not to start periods right after getting off the pill, but if I did go off and didn’t get one in three months, I should come and see her. I was already expecting that I might not get my period right away because I’d always been irregular. I didn’t get my first period until I was 14, and after that I would bleed around 5-6 weeks apart, for 8-10 days each time. Unfortunately I never kept track, so I really have no idea how long my cycles really were at that point. At around 18 I went on birth control, then Norplant (and got no periods at all on that, which was great at the time), then birth control again, so no idea what my natural cycles were like. In any case, I didn’t have any sign of anything after three months off the pill, so I went to see my PCP again.

She wanted to try a course of Provera to see if it would bring on a bleed – which of course it didn’t. Interestingly, she didn’t think my weight loss / exercise were the cause of my lack of periods, but did allow that it wouldn’t hurt to cut down a bit, and gain a few pounds. Around the same time I started reading the blog of a friend who had gone down a similar route in terms of losing weight – she had taken it a lot further than I had and was definitely much too thin – but she was writing about how she was having night sweats, and waking up starving in the middle of the night – symptoms I was beginning to experience as well. She also wrote about a study that was done on a group of men in the army in the mid 1950’s, where they were limited to 1500 cal / day diets, and exhibited many symptoms similar to victims of starvation. That, along with some behaviours that were definitely not me (like skipping one of my two daily glasses of milk, which I love) made me realize that the path I was on was in fact NOT a healthy one. I started to realize that my caloric restriction was not the best thing for my body, but had a hard time letting go of the calorie counting I had been doing. I was definitely on the edge of having an eating disorder, but the wake-up calls I was getting helped me not to go that route.

I went to see a nutritionist, and she helped me with some ideas to add some fat back into my diet. Switching from skim milk to 2%, having a handful of nuts (I particularly liked smoked almonds) for an afternoon snack in addition to the Kashi that was my standard practice), and starting to cook my foods with a bit of olive oil instead of just dry in the non-stick pans helped me at first to up my calories to around 1800.

In the meantime, the Provera of course did not work (it rarely does in someone with hypothalamic amenorrhea, which was the diagnosis I would later receive), and my PCP referred me to an ob/gyn for further testing. She first had me go on the pill for a month to make sure that I could get a bleed – that the reason I didn’t bleed with the Provera wasn’t that my cervix was blocked. I personally thought this was rather asinine as I had been getting bleeds up until a few months previously when I was on the pill, but she said we had to make sure. So back on the pill I went. And did get a bleed.

The other thing she did was to check my hormone levels – FSH, LH, estradiol, progesterone, and a few others. When the results came back, she said that they looked like hypothalamic amenorrhea to her – my FSH was normal, e2, LH, and progesterone were also, but definitely on the lowest end of the normal range. She said that a few more tests needed to be done for a definitive diagnosis (although diagnosis of hypothalamic amenorrhea is more one of exclusion of other possibilities, as there are not fixed criteria that define the condition), and referred me to a reproductive endocrinologist at the IVF clinic at the hospital.

Around this time, I started looking online for more information. I was hoping to find other people who had been diagnosed with HA to get some idea of what I was in for in terms of trying to get pregnant, but didn’t find much of anything. There was quite a bit of medical literature on the topic, but nothing from someone who had actually gone through it. So I decided to start my first blog, http://noperiodbaby.blogspot.com, hopefully to help those who came looking for such a thing after me, as I had.

The next test in the battery, ordered by the RE, was an MRI to check for a pituitary tumor; another possible cause of the low-normal hormone levels and lack of a period. That, fortunately, was negative. A few more hormone levels were taken: testosterone, 17-hydroxy-progesterone, DHEAS – those were all normal, indicating, along with the fact that my LH/FSH ratio was less than the 3:1 typical in PolyCystic Ovarian Syndrome (PCOS) all ruled out that condition. So what we were left with was hypothalamic amenorrhea. Which my RE said was very treatable with injectible ovulation induction medications – in fact, of all the possible conditions one can have that cause infertility, HA is among the easiest to treat, as almost all women with HA are quite fertile once they actually ovulate.

My RE agreed with my PCP and OB that I didn’t need to gain weight or reduce exercise (which I already had to this point, by about 50%), but the medical articles I was reading suggested to me that they might be wrong on this. So I finally managed to give up counting calories, and continued to put on more weight, one or two pounds a month.

In the meantime, I had also made an appointment with Dr. Corinne Welt; first author on a number of papers about hypothalamic amenorrhea, to get her take on my situation, and also to see if there were any clinical trials she was running that I could participate in.

My next appointment with my RE, and my appointment with Dr. Welt had to wait for a while though – we were going on vacation, a nice long one. The vacation meant more food, no calorie counting, and a lot less exercise than I was used to. And lo and behold – I got my period!!!!!

I was SO excited. Particularly because my sister and I had been planning on getting pregnant together, and on our vacation she was announcing her pregnancy to all the relatives we were visiting, with me just sitting mutely by, wishing so hard that I could be making the same announcement.

When we got back from the vacation, I was right around cycle day 14 (CD14 – the first day of your period is CD1), which is when normal people ovulate. I had my appointment with Dr. Welt, right when I got back. She was wonderful – covered all the options with me: wait and see if I would get my cycle back on my own, try Clomid (although she said that it does not work in the typical hypothalamic amenorrhea patient), injectibles (she very strongly recommended either Repronex or Menopur as they contain both FSH and LH, as opposed to something like Follistim or Gonal-F which contain FSH alone – in patients with HA, we do not make much of our own LH which is needed to help our eggs mature), or the gonadotropin pump. The latter option seems to me to be the optimal – it mimics a natural hormone cycle in which the FSH levels rise and fall on a 45 minute cycle, and almost always results in ovulation of only one egg, as opposed to the injectible medications which are much harder to control and more often result in multiple ovulation and therefore multiple conception. Unfortunately it is not readily available in the US (although it apparently is in England and Canada), but I might be able to access it through a clinical trial she was running. It would also be a lot less expensive – our health coverage unfortunately did not cover infertility treatment, so if we were to do the injectibles, we would be paying out of pocket.

Based on the fact that I was CD14 on a natural cycle, Dr. Welt thought that an ultrasound was appropriate (my first experience with a transvaginal u/s) – and we saw a 13mm follicle. I was *thrilled*. Dr. Welt said that normally once a follicle gets to around 12mm, it will grow at about 2mm/day, and ovulation is just around the corner.

My next appointment with my other RE was just two days later, which theoretically was perfect timing to see my follicle had grown. Unfortunately, it hadn’t – still sitting there at 13mm. After I found out we were ineligible for the clinical trial of the gonadotropin pump (my husbands sperm results were not normal – he had a low morphology percentage), we decided to move forward with what the RE thought was the best course of action, the injectibles.

I wish, knowing what I know now, that I had remembered that my cycles were always longer than normal, and waited a bit longer before making that decision. We all know that saying about hindsight though.

So after three weeks on birth control pills so that I could get a bleed before proceeding, we jumped into injectibles. Unlike a fair number of RE’s about whom I’ve heard since then, my RE was very conservative, starting me off at a dose of just 50 units (2/3 vial) of Repronex. (She originally was going to prescribe Follistim, which is their normal ovulation induction drug, until I asked about whether it would help to have a drug with the LH as well, as Dr. Welt had suggested was crucial – she agreed that it probably was a good idea and said we would go with the Repronex. I had to remind her and the nurse a couple more times too.) She said that normally in women with HA once we reach the threshold where we respond, we respond very well to the injectibles, to the point where it is very easy to overstimulate. Her goal was only to have one mature follicle, to reduce the chance of multiples or even twins, as those pregnancies carry a much higher risk than a singleton pregnancy.

The protocol we followed for each of my injectible cycles (except one, which I’ll get to below) was to start at a low dose (subsequent cycles we started at 75 as I didn’t respond to the 50 or even 75). I would take a low dose for 3-4 days, then come in for an ultrasound and bloodwork (estradiol, e2) to see how things were going. We’d usually keep my dose the same for another 2-3 days, until a second u/s and b/w showed no progress, at which time we’d increase by half a vial at a time. Keep going in for u/s and b/w every 3 days or so. On most of my cycles I would start to show some response once we got to 1.5 vials, or 112.5 units. Like most women with hypothalamic amenorrhea, I was on the injectibles for much longer than an average woman, taking the meds for 13-21 days before I finally got to the point where I had a follicle ready for triggering. At that point I’d take a shot of Ovidrel (human chorionic gonadotropin; hcg, which is like the natural luteinizing hormone (LH) that normally causes ovulation. I’d take the shot at night, then go in for an IUI (intrauterine insemination) 36 hours later.

After my first cycle, where I was particularly hopeful, I got my period only 10 days later, meaning a nine-day luteal phase (LP), the period during which the egg fertilizes and implants (if fertilization occurs). A normal LP is 12-14 days, and there is some research to suggest that an LP shorter than 10 days can be detrimental to achievement of pregnancy, so I pretty much begged my RE to prescribe progesterone during my next LP to help with that.

One of the unfortunate side effects of the ovulation induction medications is that there are often follicles which continue to grow and produce estrogen – they don’t contain eggs, but the estrogen they are producing is detrimental to future cycles, these are called cysts. And of course, as is quite common, I had one. Which meant that I couldn’t do another cycle right away. So back on birth control pills for me. My RE prescribed me something different from what I’d used before, a low dose pill, which made me gain about five pounds in the space of a week. Ugh. Just what I needed – not only was I not pregnant, I was getting fat. I would come to realize later that was actually a good thing, but at the time I just felt like crap.

On my second cycle, I started at 75U, slowly bumped up until we got to 112.5U, at which I responded, and everything seemed lined up. Unfortunately, this cycle was also a Big Fat Negative (BFN), but with the progesterone I didn’t get my period until 16 days after my IUI which was a big improvement – chance for an embryo to snuggle in there, if we managed to make one.

My one really bad cycle happened on the third cycle, when we started at the dose to which I responded, the 112.5 units. I responded right away, which one would think was good – but in fact it meant that too many follicles were developing at once. So my RE reduced my dosage, which then meant my e2 plummeted, we did my IUI only 12 hours after the trigger shot because they were afraid the drop in e2 meant I was ovulating earlier than I should based on the trigger shot, and basically the cycle was crap. So I am definitely in favor of starting low and slowly moving up, to allow only one or at most two follicles to become dominant.

My fourth and final cycle we went back to the 75U starting dose, everything seemed perfect again, I even got my RE to agree to 2 IUIs which some research (although not all) shows increases your chances – but still a BFN. At this point, given that 90% of women with HA will be pregnant within three cycles of ovulation induction, it seemed that it was time to move on to the next step of IVF. Not covered by our current insurance, but we would be able to switch to a different insurance come Jan 1 (10/31 was the day I got my period after our fourth try), so we were in a holding pattern until the insurance took effect.

A friend had loaned me her Clearblue Fertility monitor, and I decided what the heck, I may as well amuse myself during the two months I had to wait, and see what happened. I had, by this point, gained about 20 lbs over my lowest weight, as well as cut my exercise by over 50%. I was no longer doing 2-3 activities per day with no days off, but rather only one, and taking at least one day off during the week. I had also started seeing an acupuncturist around my third injectible cycle. Who knows exactly what it was that did the trick, but after about a month of using the monitor every other day (I didn’t want to waste the sticks), I actually got a positive!!!!!!! I was so freaked out that I might have missed my ovulation (I was taking my basal body temperature every morning as well, and it was up a bit that day), I made my husband do the deed right then and there, at 5:30 in the morning. I got another positive OPK the next day, negative the following, and a temp rise the day after that. So I actually ovulated all on my own!!! And then two weeks later I got the absolute best surprise ever; a positive pregnancy test.

I remain firmly convinced to this day, from my own story as well as others I am now familiar with, that it was the weight gain and cutting exercise that helped get my body to a place where it was no longer in starvation mode and not suppressing my ovulation. I have now been in contact with 50+ women who have also had HA, and through that contact it has become clear to me that just as the medical literature says, keeping one’s body in a constant energy deficit by exercising too much and eating too little, or just having body fat that is too low, is sending signals to your reproductive system that it cannot afford the extra calories that are needed to sustain another life inside you.

It astonishes me the number of doctors who have said that it is NOT a woman’s weight or exercise (and particularly the combination of the two) that is causing the amenorrhea. In most cases (there are a few exceptions, which seem to be in women who were significantly overweight to begin with, then went to the other extreme) when we give up our super skinny “healthy” ideal, and become truly healthy (BMI in the 22-23 range), we DO ovulate and cycle on our own.

When I was gaining my weight back, my personal mantra was always “Do I want to be thin, or pregnant?” I would repeat it to myself on days when I would feel bad about the weight I had gained back (and so much of it is the self-flagellation that is instilled in us by society, I am quite convinced that no-one looking at my from the outside would have called me anything other than thin to normal, even when I was at my heaviest). Once I had achieved my goal and was in contact with other women going through the same thing, I would remind them.

If injectibles are an option, and they work, great. I do still think, though, that gaining some weight to get into the normal BMI range of at least 19.5-20 before getting pregnant is a good idea for the health of your baby – thinner women ARE more likely to have underweight babies, as well as to have miscarriages. But if injectibles are not an option for whatever reason, gaining weight and cutting exercise WILL work. And the more quickly you can gain the weight and cut the exercise, the more quickly your cycles will return. I have heard of doctors saying to people with HA, “You could gain 50 pounds and your cycles still will not return” – they are WRONG.

So many of us have the fear – what I if get “fat”, and I still don’t get my cycle back – you WILL. And gaining weight will also help put your body in a place where you can respond to the less invasive and much less expensive option of Clomid.

In a recent spate of positive pregnancy tests among women I know with HA (22 in total), 50% were from a combination of weight gain and Clomid, either a standard protocol or extended. Another 25% were completely natural, just from weight gain, exercise reduction, and a measure of patience. And the other 25% were from injectibles.

And of all the women I know with HA, all except one who had issues with ovarian cancer in addition to HA, have gotten pregnant over time. Not everyone in the time scale they would have desired, but every one has managed to get pregnant. Pretty damn good odds.

So if you’re in the same boat, please, take some time to read through the articles, research and stories we’ve collected here, and take some heart from the statistics. Whether you decide to go the natural route (weight gain and exercise alone), to try the latter with Clomid, or to move on to injectibles, you will be able to get pregnant. And despite what your doctors may say, the weight gain / exercise reduction WILL work. For me it took 1.5 years, which included the four failed injectible cycles, a couple of months on birth control for various reasons, a total of 23lbs of weight gain (which my 19 month old son and second pregnancy are well worth), a 50-60% decrease in exercise (running seems to be the worst in causing HA, most women who have regained their cycles have had to cut out their running entirely). I do believe that if I had been more patient after I had my first natural AF which was 8 months after I went off the pill and started the process of recovery, I would have been pregnant naturally within a year.

7 comments:

N. Wong said...

Thank you for your very insightful and inspirational blogs!

Though my doctor has not yet determined that hypothalamic amenorrhea is to blame for my absent periods (I have been without my "CB" for just over a year), I am certain that HA is the cause.. and I am now locked in a very frustrating waiting period as I anticipate my lab results and am engaged in my 10day progesterone challenge..

I am earnestly trying to go the natural way of regaining my period--weight gain and limited exercise. How long, roughly, should I expect until my cycle returns to normal? I've been eating like a mad woman in hopes of expediting the process in the past few days :-)

N. Wong

NNaz said...

Thank you thank you THANK YOU SO MUCH for sharing your story - I particularly appreciate that you shared the positive stats on other women you know with HA - thanks for the hope!

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Christa1214 said...

Hi,
Thank you so much for writing about your experience with HA. Its really nice to know Im not alone. I was able to conceive with injectables in about a year time and now I am hoping to have a second child. My son is 14 months old and we just weaning 1 month ago but still no period. How long after your first baby did you cycle return?

kishorvarmaganapathiraju said...

Thank you for the information of HA.

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