Perhaps the only thing more frustrating than RED-S is trying to describe your situation to a doctor (or anyone else for that matter). In the early stages, you might not present many clinically obvious symptoms; you could just be feeling unusually fatigued or noticing subtle differences in your training. Of course you can distinguish between tired and tired, but how are you supposed to articulate that to someone who's looking at you like a picture of health with no abnormal test results to suggest otherwise?
Even if you know in your bones that something isn’t right, your doctor probably isn’t interested in getting to the bottom of the subtle underlying reasons why. It's not that they don't want to help (I'm sure they absolutely do), but until there is more research and understanding in this area it'll be rare to find someone who readily offers up the information you need. Despite the fact that this is a frighteningly common issue in sport, athletes still represent a small sub-set of society and many doctors won’t see athletes with RED-S or period problems very often.
If this is the case, it’s important (crucial) not to get disheartened and give up on exploring the issue further. I know from experience how easy it is to brush whatever you’re feeling under the carpet and let the absence of a diagnosis feed into your denial that something in your situation needs to change. But when this approach eventually becomes impossible, you’ll be right back where you started having wasted months or even years attempting to push through it.
Instead, if you decide to become an active participant in understanding your health picture and get to grips with what to ask and how to explain your situation, you'll get to where you need to be far sooner. Here’s my advice on how.
Specifically for females
When it comes to RED-S, one of the biggest red flags surrounds your menstrual health. If you’re on the Contraceptive Pill – this can be tricky to assess. Not only because the Pill works by suppressing your natural hormones, rendering it near impossible to know whether you would get them if you weren't on the Pill, but also because, for some desperately frustrating reason, doctors may well reassure you this is an acceptable substitute. Even if you’re not on the Contraceptive Pill and are experiencing menstrual abnormalities, you’re likely to be told this is normal for an ‘athlete like you’.
I can’t tell you how many doctors assured me my missing periods were nothing to worry about. Or encouraged me to go back on the Pill when I expressed worry about their absence. Perhaps yet more concerning was that there was no mention of the dangerous and potentially life-long consequences of missing out on these crucial female hormones when it comes to bone, heart, brain and reproductive health. You only have to look as far as other British athletes like Bobby Clay, Mary Cain and Jen Walsh to know that this is a serious issue with serious consequences, yet these ladies were most likely reassured that their missing menstrual cycle was ‘nothing to worry about’ at some point too. I’m not saying this to alarm you – I’m just trying to encourage you to take ownership over your own menstrual health now, whilst medical practices are still catching up with the science.
Just knowing there is a high possibility your menstrual health wont be looked into should help you prepare for ensuring it is. Note down how your menstrual health has been in recent months/years or how long you’ve been using the Contraceptive Pill. If you’re not on the Pill and are experiencing any menstrual dysfunction, it’s important to rule out any underlying reasons for it. Explain that as an athlete, you value your menstrual cycle as an important measure of overall health and would like blood tests to assess your levels of:
Luteinising Hormone (LH)
Follicle Stimulating Hormone (FSH)
Thyroid Stimulating Hormone (TSH)
Anti-mullerian hormone (AMH)
Testosterone (both free and total testosterone)
These are all important hormones (you can learn more about them here) and test results should give you and your doctor an idea of about your menstrual health status. Be aware that they may not be able to test them all and there are certain times to test for certain hormones – but your doctor should be able to talk you through this.
NB: If you are on the Contraceptive Pill, then most of these tests would be irrelevant since the Pill works to suppress these hormones. At this point, I would urge you to reconsider your decision to use the Pill. This discussion is way beyond the scope of this post but you can learn more about why it could be potentially detrimental to you here and here.
For all athletes
- Prepare for your appointment by pulling together a brief overview of your history, including training load, nutrition and any illnesses or injuries is important. It can be helpful to ask for input from your coach, physio or anyone else you might work with. Since your appointment is probably only 10 minutes or so, it’s important to keep this concise.
- Take some information with you. I would strongly suggest taking a copy of the RED-S clinical assessment tool to your appointment, found here. The chances of your doctor ever having heard of RED-S is slim, so the sooner you can present them with the details, the better. If your doctor isn’t willing to read it or learn more about research in this area, you may want to consider seeking a second opinion from some who is.
- Consider going privately. If you are at all able to afford a private practice, I would highly recommend seeking the medical support from the EN:SPIRE Clinic, found here. If you don’t relate to any references to eating disorders on the website, please don’t let this put off. Whether your REDS- situation has been created by disordered eating habits or by accidental under-eating, these clinicians will help assess your health picture before offering any dietary advice.They are leading experts in this area and I couldn’t recommend them highly enough for any athlete of any age, gender, sport or skill level.
- Make the most of what you've got: If you aren't able to afford privately and your doctor doesn't have the capacity to look into your problem further, you could ask to be referred to a sports medicine practices via the NHS. A sports medicine doctor is far more likely to a) know what RED-S is and b) be delve into it further if they don't.
- Bone health: If you’ve experienced any bone related injuries (e.g. stress fractures), ask for DEXA scan (measuring hip and spine density) to assess for signs of low bone density or osteopenia. This is a crucial indicator of RED-S and is one of the most important consequences to avoid or treat early. While your doctor might seem skeptical as to whether you need one, a scan should be available on the NHS to anyone considered by their GP to be at risk of developing osteoporosis. Ideally, one would be offered to athletes displaying symptoms of RED-S before they develop any bone injuries, but given the cost of these scans, this is unlikely.
- Remember you are not 'normal': If you’re experiencing prolonged fatigue, hair loss, or any other symptoms of low iron levels, it important to get it tested. This is best diagnosed through blood tests for ferritin, which will indicate your levels of stored iron. Typically, anything less than 15 ng/mL is deemed as ‘iron deficiency’. However, certain athletes require more than double the iron levels of less active individuals so you might still be deficient at a far higher level. So, I would ask your medical practice for the actual test result and keep a record of it yourself. From experience, I’d say you should be aiming for above 30-40 ng/ml. You can read more about this here and how it relates to RED-S here under the section titled 'Haematological'.
Finally, be aware that no matter how many RED-S symptoms you present to your doctor, they are unlikely to understand that the underlying causes of your issue surround an energy deficiency. Ultimately, if your problem is RED-s, then it's caused by under fueling for your training load - which may still seem to be a decent quantity of food for anyone else besides you. Your BMI may well sit within the 'normal' range. It may even be above the 'normal' range yet you can still have RED-S. But, unless you present a regular doctor with something more obvious like an eating disorder or severely low body weight, they are unlikely to offer nutritional advice.
- Be as honest as possible: The above point feeds into being as honest as possible with yourself and your doctor about your relationship with food. If you are certain you don't display any disordered eating behaviours (like those described here) then discuss the possibility that you're unintentionally under fueling. If you’re anxious about eating too much or gaining weight at the detriment to your sports performance, then mention it. If you’re not sure whether you eat enough to sustain your training load or menstrual cycle, then tell them. And, if you think you might have a full blown eating disorder or exercise addiction then be honest about it. You should never ever feel ashamed or embarrassed while talking to your doctor. I promise you, they'll have seen and heard far worse things than whatever you’ll come out with, so this is your opportunity to have a judgement-free conversation with someone who can potentially help you. Seize it.
Bottom line: Trust your instincts. Chances are, you’re an athlete who would be willing to push through most things if it meant continuing your training. If you’re willing to seek some help about your situation, then you need to be equipped with how best to gain the advice you need whilst avoiding further frustration. Arm yourself with as much understanding of your own health picture as possible and don’t give up if you don’t get everything you need from your first appointment.