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Your first endocrinologist (often referred to as an endo) visit can seem daunting, so the below information covers what to expect from your first visit and the sorts of questions you may want to ask.
It is worth bearing in mind that a lot of people with hypothyroidism state very little help from an endocrinologist (myself included) but I do think it’s worth every thyroid patient seeing one if they can, so that they can decide for themselves if an endocrinologist could be beneficial to their care.
What To Expect
You’ve likely been waiting for a while to see the endocrinologist, as most healthcare systems work on a waiting list basis, so it’s not uncommon to be a little anxious about the day finally approaching. Try not to be.
So, what does an endocrinologist do on the first visit?
When you are called in to your appointment with the endocrinologist, they’ll have just read your medical records to gauge an idea on why you’re coming to see them. Hopefully, your doctor has gone in to good detail about this also, so the endocrinologist knows what to expect.
They should check your most recent test results and give you their opinion on what they suggest these show. They should ask how you are feeling and, of course, ask how they can help.
This is your opportunity to explain just how you’re doing, living with thyroid disease (and any other conditions you have). Don’t hold back, be completely honest, and discuss at great detail how it is affecting your life and what you want to change or what you want to gain out of this appointment. Prior to the appointment, make a list of your symptoms so you can show the endocrinologist.
In my experience, I found that the endocrinologist down-played a lot of what I had to say, but he did agree to run a lot more testing.
You may find that the endocrinologist performs further testing for you too, which may or may not be conducted on the same day; such as blood, urine or saliva tests. They should then send the results to you and your regular doctor through the post within a month. This further testing can include thyroid tests, vitamin levels and tests for other conditions, diseases or general health.
A physical examination may also be performed; it is not unusual for the thyroid gland, located in your neck, to be examined, as well as the abdomen for the adrenal glands. Do bear in mind though, that most endocrinologists only recognised Addison’s and Cushing’s disease and not ‘adrenal fatigue‘, which many thyroid patients have alongside hypothyroidism.
They may take your blood pressure, pulse, feel your hands or feet to gauge your body temperature or circulation and take your weight and height measurements. Due to the physical examination possibly requiring you to remove clothing for ease, you may want to request a same-sex chaperone be present or take a friend or family member with you. Ask ahead of the appointment if these examinations will likely be done, so that you can prepare yourself. Not all endocrinologists perform these examinations but there is a chance they may.
If you do take someone with you, have them explain to the endocrinologist how they see your thyroid condition affect your life also, as this is further evidence provided by someone who sees you much more often than the endocrinologist. The longer they’ve known you, e.g. a parent, long term partner or close friend, the better, as they tend to be taken more seriously by a healthcare professional over a new partner or neighbour for example.
Try not to take children if you can, so that you can focus entirely on yourself and what you need to explain to the endocrinologist, rather than keeping a child entertained. Make notes of what you want to mention or ask and take it in with you so you won’t forget anything.
You’ve likely been waiting for the appointment for a while, so you want to make the most of it. Most importantly, make sure you ask everything you want to at the appointment and don’t feel too disheartened if it doesn’t go as well as you’d hoped e.g. the endocrinologist doesn’t offer the kind of help you’re looking for in your thyroid journey.
What To Ask
The below are some suggestions on what to ask the endocrinologist at your visit:
- What their opinion is on your latest blood results. Do they agree with your thoughts? (Optimal levels, for example. You want a doctor who will work to get you optimal and not just ‘in range’.)
- Will they give you further testing? i.e. a full thyroid panel (TSH, Free T3, Free T4, Reverse T3, thyroid antibodies TPOAB and TGAB) and vitamin levels (D, Iron, Ferritin, B12, Folate etc.)
- Do you have Hashimoto’s or will they test you for Hashimoto’s? What do they know about Hashimoto’s and the treatment/management for it? (It’s important to know if your hypothyroidism is autoimmune.)
- Do they recognise adrenal fatigue (note: it is more accurately referred to as hypothalamic-pituitary axis dysfunction) as a real condition and do they test for it? If so, is it via saliva? (Bear in mind that most conventional doctors don’t recognise this condition, which is a crucial part to many thyroid patients’ puzzles.)
- Do they think you could have any other underlying health conditions or problems? Will they test to check?
- What thyroid medication options do they consider? Would they consider changing your type of medication or adjusting the dosage to get you feeling better/closer to optimal? (There’s not just T4 medication, there is also T3 and NDT.)
- What are the next steps in improving your health and getting you closer to better health? What do they have planned for you now?
Many people find the best success with private endocrinologists or functional medicine doctors/functional medicine practitioners, but there are some good endocrinologists out there too. Read more about the different types of medical professionals here.
Go in open-minded and knowing what you hope to gain out of the appointment.
Best of luck!
Have you seen an endocrinologist? Share your experiences in the comments below.
You can click on the hyperlinks in the above post to learn more and see references to information given.
Rachel Hill is the highly ranked and award-winning thyroid patient advocate, writer, blogger, speaker and author behind The Invisible Hypothyroidism. She has two books: ‘Be Your Own Thyroid Advocate‘ and ‘You, Me and Hypothyroidism‘. Her thyroid advocacy work includes authoring books, writing articles, blogging and speaking on podcasts. Rachel has worked with The National Academy of Hypothyroidism, BBC, The Mighty, Yahoo, MSN, ThyroidChange and more. She is well-recognised as a useful contributor to the thyroid community and has received eight 2020 WEGO Health Award Nominations.