Got Diagnosed with a Hormonal Imbalance…Now What?

Being diagnosed with a hormonal imbalance can feel overwhelming. Questions, doubts, and fear of what this diagnosis ‘means’ long-term can flood our minds, leaving us feeling like we don’t even know where to begin. Some patients find in the doctor’s office that their minds have gone blank as they have received a different diagnosis than they expected (or at least hoped). No matter how you ended up with a positive diagnosis for a hormonal imbalance, know that your feelings are 100% valid. There is no right or wrong response to this kind of diagnosis. Navigating a hormonal imbalance is a journey, one in which you can  figure out what works and leave what doesn’t, and get to know your body in light of this diagnosis. 

With that being said, we’re going to suggest some steps you can take right now to understand more about the condition you’ve been diagnosed with, potential questions to ask your doctor and other specialists, as well as useful resources you can lean on during the highs and lows of navigating a hormonal imbalance. Let’s dive in. 

Research your condition 

Whether it’s PCOS,  a thyroid disorder, Hashimoto’s, or another condition that can be affected by your hormones, sometimes we have an idea of what it generally encompasses (and have often lived through several symptoms) but, as Socrates wrote, “you don’t know what you don’t know.” That’s why researching your condition using high quality resources can be useful in not only helping answer some high level questions, but also in noting some more difficult-to-answer questions you may want to bring to your primary care doctor.

Here are some resources that are useful in getting a high level overview of a hormonal condition, its symptoms, and potential treatment options: 

• National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)

• Founded in 1950, the NIDDK is part of the US’ National Institute of Health and it receives federal funding from congressional appropriations. 

• Endocrine Diseases page: If you scroll down, you’ll see a box titled ‘Endocrine Disease Topics,’ and you can click on the type of hormonal imbalance you have been diagnosed with for a more in depth view of this condition and its long-term implications. 

• Johns Hopkins 

• Johns Hopkins Medicine is a great science-based resource for information on the human body and how it functions

• This page on the endocrine system as a whole is a helpful one-pager that explains what the endocrine system does and what the key players are in a well-functioning system.

• Healthline 

• Healthline is evidence-based, linking the studies that it references in the body of its articles, so you can easily look up and dig deeper into resources. Healthline can also be useful for quickly comprehending the causes, symptoms, and treatments relating to diseases, as well as seeing some of the latest scientific research collected and summarized in one place. 

• Whichever search engine you use, type in “healthline [your hormonal imbalance/condition]” and you will likely get a page on your hormonal imbalance pop up on the first page of results.

Write down your thoughts and questions 

You may already have had a pen and paper (or an online document) for you to take notes as you were researching. If not, pull up your preferred method of note-taking and write down the most pressing questions that came to your mind as you were researching. 

Here are examples of common questions that might be top of mind: 

• What are treatment options for [hormonal imbalance]?
• What are the side effects of these treatment options? 
• Which, if not all, of these treatment options are covered by my insurance? 
• How will this condition affect other aspects of, or my overall, health?
• What are the long-term risks of this positive diagnosis?
• Will my fertility be affected? Can you give me percentages on how many women struggle to get pregnant as a result of [hormonal condition]?

Be sure to also make note of the following from your research: 

• Treatment options that you believe are an especially good fit given your lifestyle; you can give this feedback to your doctor and you can work together to decide on a ‘first port of call’ before other treatment options.
• Preferences given your values and medical history.

Make a follow up appointment with your primary care doctor 

Unfortunately, because of strains on the healthcare system that span way beyond the scope of this article, sometimes appointments with your doctor can feel rushed. And you may be wondering how you can get all those questions answered in the level of depth that you need in such a short space of time, nevermind walk through a treatment plan you’re comfortable with. 

That’s why we recommend a few things to make the most of your doctor’s appointment. 

• Research as much as possible beforehand 

• As an example, if you have been diagnosed with PCOS, and hair loss is a symptom you struggle with, then researching the most effective treatment options beforehand could be a good idea. Common treatments include: birth control, spironolactone, topical minoxidil, PRP. From here, when you get to your appointment, you 1: ask your doctor more in depth questions about the treatment(s) you’re most interested in, and 2) ask your doctor what they think is the best option to start with given your medical history, family history, and current medications. 

• Write down your most pressing questions beforehand 

• Having your questions written down ahead of time will save you from worrying about forgetting a question that you really want to hear your doctor’s answer to. 

• Write down your doctor’s answers + the decided treatment plan

• Because doctor’s appointments can be so full of information, as well as unfamiliar terms, and they don’t always last as long as patients might like, be sure to: 1) write down your doctor’s answers as they are speaking, 2) jot down any unfamiliar terms so you can return to them later in the conversation for further explanation, and 3) so that a week or so from now, when you might want to take action on something your doctor said, you don’t need to rely about it being fresh in your mind - it’s right there on the page!

• Ask for a specialist referral, if necessary 

• If you want to speak with a professional who specializes in hormonal disorders, then a referral can mean your primary care doctor and specialist work together to create the best possible treatment plan for you.
• That being said, referrals can take different forms, depending on whether you need emotional support, nutritional support, or something else. 
• Specialist referrals you may want to consider asking for include: 

• Registered dietitian: this is a highly regulated profession. Registered dietitians need to complete a master’s degree from an accredited university, complete a supervised practice program, pass a national exam, and get licensed by their state. (Note: the term “nutritionist” is not protected; anyone can call themselves a nutritionist, while a registered dietitian is a protected term, meaning only those that pass those requirements we spoke about earlier can call themselves this).
• Licensed therapist: a licensed therapist is someone who has an undergraduate degree (often in the social sciences), a graduate degree (or above) in something like counseling, marriage and family therapy, or social work, completed hundreds of hours of clinical training in internship during their degree program (the number of hours varies by state), completed thousands of hours of clinical practice post-graduation (also varies by state), applies to their state licensing board with proof of their hours and degree, and passes a licensing exam. This article gives a great breakdown of the different types of therapists and requirements to become one. What’s important to note is that a licensed therapist is a protected term in most states (while, for instance, being a ‘life coach’ is not). 
• OB/GYN: This is a type of doctor that specializes in both obstetrics (working with pregnant women and delivering babies) and gynecology (involving the female reproductive system, and treating things like STIs all the way to chronic pain). 
• Endocrinologist: according to the National Cancer Institute, this is a doctor who has “special training in diagnosing and treating disorders of the endocrine system (the glands and organs that make hormones)” and this includes diseases such as “diabetes, thyroid, adrenal, and pituitary gland problems.” Figure out what follow ups will look like 

• Will you regularly get blood work done every 3 months? When will your next check in be, to measure how effective the decided treatment plan has been? What does ‘effective’ mean - how will this be measured? 

Don’t be afraid to turn to ongoing resources

Like we said at the beginning of this article, being diagnosed with a hormonal imbalance is a journey. It can be filled with highs and lows, frustrations, hope, and moments of gratitude. That’s why we’re listing some resources that could be helpful in navigating this journey. 

• Infertility 

• Support groups: 

• This resource directory from Johns Hopkins Medicine includes links for support groups that focus on infertility, individuals that have faced multiple miscarriages, and have experienced ectopic pregnancy, to name a few links that could offer community and support.  

• Allara blog, Fertility category

• Therapy

• Tips for Finding a Therapist 

• Created by Mickey Atkins, a Licensed Clinical Social Worker - in the video description, she includes links for a therapist directory with a focus on inclusivity and serving those with marginalized identities, as well as a Black-owned therapist directory for BIPOC providers to connect with BIPOC clients. 

• Tips on Caring For Your Mental Health (Outside of Therapy)

• Created by Mickey Atkins, a Licensed Clinical Social Worker - advice from a licensed social worker on low-cost ways to care for your mental health in your general day to day. 

• Nutrition

• Allara’s Nutrition Evidence Library
• Allara blog, Nutrition and Diet category
• Find a credentialed, registered dietitian through the Academy of Nutrition and Dietetics here, or have a built-in care team, complete with registered dietitian and OB/GYN or Women’s Health Nurse Practitioner who will create a personalized care plan based on your unique bloodwork and diagnosis through Allara.