Does anyone know any studies which point to menses starting after the proper nutrition is reached?
Not exactly what you asked for, but here's a post by IrishUp on a related topic:
The emerging understanding is that the endocrine imbalances caused by malnutrition, can be severe and enduring. The truth is that some small minority of patients do not regain normal menses, and we do not really understand why. The VAST majority of people will resume (or start), but the process of getting there can be arduous. My impression from the clinical literature is that it is often more complicated when the AN interfered with menarche - the normal start of menstruation.
Rhian, my understanding of working within the NHS system, is that you may have to agitate pretty loudly to get the work up and medical services you need to fully evaluate this. The lack of normal periods in a teen/ young adult who should be having them is really quite serious and has long term health implications including osteopenia/osteoporosis, impaired fertility (for those who want children), and elevated risks for cardiovascular disease and some cancers. All of these have important implications for both longevity and quality of life / future functionality. I underscore these points, because it seems to me that this particular issue is often given short shrift by clinicians. It is absolutely 1000% a problem that merits priority treatment in the here and now - early disability due to brittle bones is common in women with a prolonged history of amenorrhea. It's something that really should be more aggressively prevented than is often currently the case, IMO. This is not just a "lady bits problem".
The unknown can be confusing and overwhelming. My personal strategy is to get as much good information as I can, and from there try to start with obvious things about which I have some control, and systematically work towards the more complicated that requires more support. The very first thing that needs to be done, is a full medical workup including bone density scans. Ruling out anything undiagnosed is the first order of business, as is understanding her baseline bone health.
Assuming that there is nothing otherwise unusual going on, the thing that is highest on the Likely Suspect list, is persisting latent or low-level (subclinical) problems regarding anorexia. The most obvious and common culprits, and those that might be the most straightforward to address (though not necessarily *easy*) are these:
1. She is not eating or absorbing enough overall calories;
2. Her diet does not have a high enough fat and high-quality protein content;
3. Her activity level is too high;
4. Stunting due to amenorrhea and malnutrition.
I will link to references and further reading on these points, and they are not discrete seperate problems, but frequently overlap to a high degree. I'll leave you to read more in depth at your own pace, but I'll do my best to briefly outline the major issues. Let me start with #4, because it sounds like your d is at very high risk for this, given the history you relate.
#4. I have written a longer post here, and indeed that whole thread is worth a read. But basically, most women grow to full adult height after they start menstruating. Malnutrition severe enough to stop that process from happening, is also severe enough to stop long-bone growth, and without the normal hormone functions, resumption of the normal growth pattern is much much less likely to be happening. The problem is, the body really WANTS to be the size, shape, and body composition it is genetically programmed to be (the embedded link has a fuller discussion of stunting and catch-up growth in the setting of AN). So one thing that is highly probable, is that your D's body is looking for a lot of extra nutrition still, in order to fuel catch-up growth. Biologically speaking, your d's body might be getting plenty of fuel for the size she IS, the problem is, the size she IS, is short of where her genetic blueprint is meant to be. Catch-up growth happens well into the 20s, and we see it on the forum here over and over again. If there is a genetically delayed growth pattern in your family, that might also be interacting with the malnutrition history.
The take-home point is this: as long as she is not within the shape and size range her genetics are programmed for, her body will stay in Starvation Mode, and she is unlikely to spontaneously enter menarche (first period) under such conditions. Leading us straight into
#1, 2 & 3. There is a complex interaction between sustained nutrition, previous starvation, and hormone function. We don't understand it all. This thread has a terrific discussion, including links to resources.
- Many people with AN remain hyper-metabolic for many many years. This in turn means that what looks like enough food, is actually NOT enough for them.
- Many people with previous malnutrition often seem to have altered sensitivity to the content of lipids and (animal) proteins in their diet - they do not do well as vegetarians (although pescetarians and ovo-lacto seems to be fine. Animal proteins have micrionutrients that are not found in plant sources, or not absorbed easily from plant sources).
- Many dietary recommendations for AN history shoot for a 30/30/40 ratio of percentage of calories from proteins, fats/lipids and carbohydrates (respectively). Being low on the protein side has negative implications for muscle and bone mass, being low on the lipid side does seem to interact with hormone levels.
- There is a lot of data that suggests that people who had malnutrition as children, that interrupted puberty (amenorrhea counts), may need to maintain bodily lipid compositions and or a weight up at the top of their range. Thus it is often the case that what looks like weight restored, is actually somewhat too low.
- Many people with malnutrition histories are extremely sensitive to activity levels, and frankly, there is emerging science that running / "endurance" activities in particular are contraindicated for people who do not maintain normal menstrual cycles.
These things suggest that in the interim, while you are sorting out whether or not there are other medical issues, there are steps you can take to "conservatively manage" what is going on. You'd probably need to commit to these for at least 6 mo, and nothing here will be harmful in the long run if it turns out they are non-contributory. In your shoes, these are what I would try:
1a. Seriously try upping calories.
1b. Shoot for another 15lbs or thereabouts. If you go for this, aim for 300-500 extra calories per day from where you are.
2. Attend to the nutrient ratio and aim for 30% from protein, 30 from fats.
3. Make sure that the daily eating plan does not have prolonged stretches (>4hrs when awake) without at least a snack.
4. Consider abstaining from all vigorous activity until you understand more about what might be going on medically, and you have a chance to see whether there was any further growth waiting to happen.
I say a 6mo commitment, because a starved body takes a while to be convinced that the famine has ended. A head's up: prepare for some distress and resurgence of ED. Human growth is kinda "out then up". That is, when you up the calories and she DOES need the extra, it's going to show up as a roundy middle. This adipose deposit redistributes very quickly when there is vertical growth (and a little more slowly if there isn't - but it will redistribute to her genetic blueprint body-type within about a year). Most people with AN find roundy middles to be triggery. ED will like as not, pop right back up.
This is not a reason NOT to push weight up - although that is what a lot of clinicians (and parents) do. But the distress is not the pathology, the ED is. The distress indicates that latent ED is not as "gone" as we all would have hoped. It is feedback that SHE needs more support (and that you are on the right track). So plan for how you can help her through this. I know that there may not be a lot of support for this initially from your medical resources, but it will be worth it to maybe give them some of the resources I've posted in links, and discuss. They may also be more moved to be supportive if the bone density or other medical workup is abnormal. Let us know if we can help brainstorm with you.
More resources on nutrition, endocrine function, and activity:
Dr. O'Toole on Weight Restoration 2.0
Dr. Katzman on Why is Food Medicine