- Your First Visit With an Endocrinologist for Hypothyroidism: What to Expect
- Preparing for Your First Visit
- Next Steps
- What To Ask
- Have you seen an endocrinologist? Share your experiences in the comments below.
- Written by Rachel, The Invisible Hypothyroidism
- What is endocrinology?
- How and Where Can I Find an Endocrinologist?
- Making the Most of Your First Trip
Your First Visit With an Endocrinologist for Hypothyroidism: What to Expect
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The time you spend in the exam room is critical, especially if you suspect a diagnosis is hypothyroidism. From your first visit to an endocrinologist, you can get a better understanding of the condition and begin to determine an appropriate thyroid treatment plan.
Hypothyroidism is a condition that results when your thyroid gland doesn’t produce enough thyroid hormones, which regulate your metabolism and energy level. Endocrinologists specialize in diagnosing and treating glands in the body and the hormones they produce. These doctors have completed additional medical training to become experts in this medical specialty. Endocrinologists can also choose to subspecialize within the field of endocrinology, so you might want to look for one who specializes in thyroid problems.
Your family doctor will likely refer you to an endocrinologist if he or she feels you need one. You also can check your local listings for endocrinologists in your area, or search the websites of specialty associations such as the Endocrine Society or the American Thyroid Association.
Preparing for Your First Visit
There’s no best time of day to schedule an appointment for hypothyroidism, says Stephanie Lee, MD, PhD, associate chief of endocrinology, nutrition, and diabetes at Boston Medical Center and an associate professor at the Boston University School of Medicine. The early hours of the morning (from 3 a.m. to 5 a.m.) are the only times that can affect blood tests for thyroid function. So, any time during normal office hours is okay.
Your first visit with an endocrinologist will likely involve a lot of questions and a few tests. Be prepared to answer questions about your medical history, including:
- Do any family members have thyroid disease?
- Have you ever had thyroid surgery?
- Have you had any cancer treatment that could have exposed your thyroid gland to radiation?
- Are you taking any medications? If so, what are they?
- Do you have any other health problems?
“We ask about all symptoms, even symptoms that seem unrelated, like changes in weight, skin, hair, or menses,” says Hossein Gharib, MD, an endocrinology professor at the Mayo Clinic in Rochester, Minn. “These very non-specific symptoms can be important because they can provide us clues.”
You can help by coming prepared with any questions you may have, and any additional information about your health history that will help the endocrinologist correctly diagnose your problem, Dr. Lee says. For instance, pregnancy can cause postpartum hypothyroidism, so be sure to tell your doctor about any recent pregnancies. Also, tell your endocrinologist about any autoimmune diseases that you or your family may have had because autoimmune disorders can cause thyroid disease.
It’s also important to discuss any gastrointestinal issues you have because these can affect the amount of medication you’re prescribed to treat your underactive thyroid.
At this first visit, your endocrinologist will also perform a physical exam to check your thyroid gland and look for symptoms of a thyroid problem, such as dry skin or a slow heart rate. You will probably have blood tests, too, to determine whether your body is low on thyroid hormone.
If it’s especially difficult to determine what’s causing your hypothyroidism, your endocrinologist might order follow-up tests to rule out other diseases that could be affect the production of thyroid hormone. These diagnostic tests could include an ultrasound, MRI, CT scan, or a needle biopsy.
Doctors typically won’t prescribe thyroid medication until a second blood test conducted at a later appointment has confirmed that you have hypothyroidism. Your doctor will wait until the cause of your illness has been confirmed before starting a treatment program.
My first ever visit to an endocrinologist was two weeks after being diagnosed with diabetes. It was an oddly comforting visit because it was in fact where Dr. Kumagai told my wife and me that I had Type 1. Long-time readers of this blog may remember that prior to that first visit, the doctors who’d determined I had diabetes — no real stumper with an HbA1c of 14.5% and a blood glucose level at my initial doctor visit of near 450 mg/dl — well, they weren’t sure whether I had Type 1 or latent autoimmune diabetes in adults — LADA.
But enough about that. Unless, of course, you want to read my diagnosis story, in which case you can return to the early days of my blog, to my first endocrinologist visit, in my three-part kickoff series, “A Diabetes Neophyte’s Prologue”.
This past Monday I had yet another endocrinologist visit. Now, if I recall correctly from something I heard early on, we (people with Type 1 diabetes) are supposed to have quarterly checkups by our endocrinologists. I don’t know if you go to your endo four times a year, but I go when I’m told to go.
And yet, Monday’s visit did not follow a March visit. It had been five months since my previous visit. Why? Well, simply put, that was when Dr. Kumagai said he wanted to see me again.
I don’t question this man’s judgment. I’ve discussed before how much my wife and I admire Dr. Kumagai and all he does for us, and what he’s done with the Family Centered Experience program at the University of Michigan. And it’s in no small part that the good care I’ve received since my diagnosis has helped me build such a great foundation of self-management.
Back in January, Dr. Kumagai was not worried about my numbers, even though I was — even though, at the time, my HbA1c was higher than it had been in the previous 18 months (6.9%), and I’d put on a few pounds. (And by the way, I wrote about that visit.)
Because my self-management has been pretty consistent since my initial diagnosis, I assume that it isn’t necessary to hit the 90-day mark each and every time. The world won’t crumble.
Still, in early May it began to feel as if I was missing something. The three-month visits are nice… hmm, how to put it — kicks in the pants, or mile markers, or patrol cars sitting out there checking my speed. Knowing there’s an upcoming HbA1c reading provides that slight nudge to help me get past the moments when I might possibly stray from the path of diabetic righteousness. Knowing that I’ll get a cholesterol check, that my blood pressure is going to be measured, that I’m going to be weighed: these events sit in the back of my mind and help to keep me focused.
Oh, sure, we don’t want to live our lives worrying that our level of control will disappoint or satisfy our doctors. That’s not healthy. It’s not healthy to perform the constant, daily, ongoing management of diabetes for someone else (well, maybe family and loved ones, sure; but a doctor: not really, no. For ourselves first of all, yes!).
I’m saying, though, that for me, to have those assessment opportunities, as well as having an endocrinologist who, although I see him maybe a total of an hour each year, I consider a friend, and whose opinion of my level of care is important to me — well, it’s all part of the bigger picture of doing everything I can to make my way through life complication-free.
And this time my HbA1c was back down to 6.2%. I also took off about 10 of those winter pounds, and with the running happening consistently now (three times in the past week), I’m hoping it continues to go down. My blood pressure was 116/72. And I hope that the cholesterol test comes back with some good numbers.
My next appointment is in September. Three months away. What a relief.
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.
See further tips on how to get the most out of your medical appointment here.
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!
You can click on the hyperlinks in the above post to learn more and see references to information given.
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What is endocrinology?
The human endocrine system consists of a number of glands, which release hormones to control many different functions.
When the hormones leave the glands, they enter the bloodstream and are transported to organs and tissues in every part of the body.
Share on PinterestEndocrinology refers to a medical focus on hormones. Hormones shape the body and drive its systems.
The adrenal, or suprarenal, glands are located on top of the kidneys. They are divided into two regions. The right gland is triangular, and the left is crescent-shaped.
The adrenal glands secrete:
- corticosteroids, the steroids involved in stress responses, the immune system, inflammation, and more
- catecholamines, such as norepinephrine and epinephrine, in response to stress
- aldosterone, which affects kidney function
- androgens, or male sex hormones, including testosterone.
Both men and women have some androgen, but men have higher levels. Androgens control the development of characteristics associated with males, like facial hair and a deeper voice.
The hypothalamus is located just above the brain stem and below the thalamus.
This gland activates and controls involuntary body functions, including respiration, heart rate, appetite, sleep, temperature, and the circadian cycles, or daily rhythms.
The hypothalamus links the nervous system to the endocrine system via the attached pituitary gland.
Ovaries and testicles
The ovaries are located on either side of the uterus in females. They secrete the hormones estrogen and progesterone.
These hormones promote sexual development, fertility, and menstruation.
The testicles are located in the scrotum, below the penis in males. They secrete androgens, mainly testosterone.
Androgens control sexual development, puberty, facial hair, sexual behavior, libido, erectile function, and the formation of sperm cells.
Located in the abdomen, the pancreas is both an endocrine gland and a digestive organ.
- Insulin: Important for carbohydrate and fat metabolism in the body
- Somatostatin: Regulates endocrine and nervous system function and controls the secretion of several hormones, such as gastrin, insulin, and growth hormone
- Glucagon: A peptide hormone that raises blood glucose levels when they fall too low
- Pancreatic polypeptide: This helps control the secretion of substances made by the pancreas
Diabetes and digestive issues can result if there are problems with the pancreas.
- These small endocrine glands located in the neck produce parathyroid hormone, which regulates calcium and phosphate in the blood.
- Muscles and nerves can only operate safely and effectively if these chemicals are at the correct levels.
Pineal body, or pineal gland
This is a small endocrine gland located deep in the brain. It secretes melatonin and helps control the body’s sleep patterns and moderate levels of reproductive hormones.
An endocrine gland attached to the hypothalamus at the base of the brain.
It is sometimes called the main endocrine master gland because it secretes hormones that regulate the functions of other glands, as well as growth and several other bodily functions.
The anterior, or front, pituitary secretes hormones that affect sexual development, thyroid function, growth, skin pigmentation, and adrenocortical function.
If the anterior pituitary is underactive, it can lead to stunted growth in childhood and underactivity in other endocrine glands.
The posterior, or rear, pituitary secretes oxytocin, a hormone that increases contractions of the uterus and antidiuretic hormone (ADH) which encourages the kidneys to reabsorb water.
The thymus is an endocrine gland located beneath the breastbone, or sternum.
T lymphocytes, a type of immune cell, mature and multiply in the thymus gland early in life. After puberty, the gland shrinks.
The thymus gland plays a role in the immune system, which protects the body against disease and infection.
A butterfly-shaped gland located just below the Adam’s apple in the neck, the thyroid produces hormones that play a key role in regulating blood pressure, body temperature, heart rate, metabolism, and how the body reacts to other hormones.
The thyroid gland uses iodine to create hormones.
The two main hormones it produces are thyroxine and triiodothyronine.
It also produces calcitonin, which helps strengthen bones and regulates the metabolism of calcium.
Below is a 3-D model of the endocrine system, which is fully interactive.
Explore the model using your mouse pad or touchscreen to understand more about the endocrine system.
The American Association of Clinical Endocrinologists (AACE) also has an online “Find an Endocrinologist” database. Be sure to select “Thyroid Dysfunction” under the category “Endocrine Focus” when conducting your search.
When you may not need an endocrinologist
The majority of people with thyroid disease in the U.S. are hypothyroid, usually due to Hashimoto’s thyroiditis, an autoimmune condition. Most are diagnosed and treated by primary care physicians, general practice doctors, gynecologists, internists, nurse practitioners, physician assistants, or other practitioners.
For straightforward hypothyroidism, most practitioners should be knowledgeable enough to order a thyroid stimulating hormone (TSH) blood test, interpret the results, make a diagnosis, and prescribe the conventional treatment: a levothyroxine drug such as Synthroid or Levoxyl.
There are three situations when you should consider seeking out a practitioner with a more broad-minded approach to thyroid diagnosis and treatment:
- If you have thyroid symptoms and/or risk factors, or a personal or family history of autoimmune disease, but your TSH test result falls within the normal reference range, and your current physician will not consider further testing (antibodies, Free T4, or Free T3).
If you have thyroid symptoms and/or risk factors, and your TSH, antibody levels, Free T4, and/or Free T3 are within the range but not optimal, and your physician will not consider making a diagnosis or trying a thyroid treatment.
If you’re being treated with levothyroxine for your hypothyroidism but still don’t feel well, and your doctor says there are no further testing or treatment options beyond levothyroxine.
You can usually find more broad-minded thyroid care from among a variety of different types of health care practitioners, including:
- physicians who practice functional medicine
- holistic and integrative physicians, including medical doctors (MDs) and osteopaths (DOs)
- licensed naturopathic physicians (NDs)
- gynecologists and practitioners who specialize in hormone replacement treatment (HRT)
- menopause and bioidentical hormone experts
You may also find it beneficial to explore whether available internists, primary care doctors, nurse practitioners, and physician assistants have a personal interest in thyroid diagnosis and treatment.
In addition, here are some other sources to help you in your search for a more broad-minded practitioner:
- American College for Advancement in Medicine – Integrative Physician Finder
- The American Association of Naturopathic Physicians (AANP) “Find a Naturopath” Database
- Lifescript’s Doctor Finder: Doctors Who Treat or Diagnose Hormonal Imbalance
- American Osteopathic Association Database
See more helpful articles:
How to Find the Right Thyroid Doctor: 9 Tips
How to Advocate for Yourself with Your Doctor
Top 10 Ways to Find the Best Thyroid Doctors
You can also save on costs by finding a provider that is in your insurance company’s network. You can contact your insurance company by phone or perform an online search to determine if an endocrinologist is in network. This is also a great way to start your search for a good endocrinologist also.
How and Where Can I Find an Endocrinologist?
There are many ways to find an endocrinologist near you; let’s break it down here!
Your primary care physician may refer you to an endocrinologist, so please feel open to ask your doctor questions about the different endocrinologists in your area. Your doctor may be able to tell you if one endocrinologist starts many patients on insulin pumps or if another office is active in clinical trials. Ask your doctor which endocrinologist he would recommend you see and why.
Another good source is any friends or family members you have that already see an endocrinologist. Word-of-mouth is an excellent way to find a new office; chances are, if they’re good enough for your picky Aunt Bessie, you will love them!
Don’t forget the old fashioned way to search; using our phone books to look for an endocrinologist is still an option you can use. If you have access to a computer, you can do an online search. Also online, most local hospitals normally have some type of physician search feature where you can search for a new physician by their specialty. Some hospitals even offer this service by phone, so if you do not have access to a computer, you can call in and they can assist you in finding an endocrinologist near you.
There are many online searches that will help you find a local endocrinologist. The American Association of Clinical Endocrinologists has a search of its members where you can even specify diabetes as the endocrine focus of specialty and The Endocrine Society is another great online search.
One challenge many people with diabetes face is communicating about their treatment and goals with family and healthcare providers. The Hormone Health Network launched DAILY (Diabetes Awareness Information for Loved Ones and You), an interactive tool designed to enable patients with diabetes to communicate better with their healthcare team and loved ones. It offers a number of resources to help with goal-setting.
Amy Tenderich provides other great tips such as ensuring the endocrinologist works with a Certified Diabetes Educator. Because you will be spending more time with the CDE, this relationship will be very important to your diabetes management.
Some other important information you may want to think through:
- Not all endocrinologists’ offices accept new diabetes patients; managing diabetes patients can be very time consuming for an office and its staff. If the office is too small, they may not be staffed adequately to provide enough care that patients with diabetes would need. Your first step when you finally find an office you are interested in will be to call and see if they are accepting new patients with diabetes.
- Next, once you have determined that they are accepting new diabetes patients ask what the wait time is for a new patient appointment. Some offices are booked for months in advance, so if you need to see an endocrinologist urgently, you will need to take this into consideration when making your decision. Your primary care physician may be able to expedite the process, so always let them know if you are unable to secure an appointment within a reasonable length of time. If they are unable to assist, they will be able to refer you to another endocrinologist.
- Next, make sure they accept your insurance or Medicare plan. Not all offices participate with all health insurance plans, so ask at that very first call.
- If you are pregnant or plan to become pregnant, ask if they treat diabetes patients who are pregnant. If you have been diagnosed with Gestational diabetes, ask if they treat and manage patients with Gestational diabetes throughout their pregnancy.
Making the Most of Your First Trip
Here are some things to keep in mind.
Ask questions and write down all your questions
If you are pregnant, this may warrant a consultation with the endocrinologist where you sit down and have a conversation with them regarding how they would manage you and your unborn baby throughout your pregnancy. Come armed with a list of questions such as how closely would they work with your obstetrician, if you had to go on insulin, would the endocrinologist take responsibility for providing the dose adjustments, etc…
I believe all patients seeing any doctor should come to the visit prepared with a list of questions. You have a couple of symptoms you have been meaning to report to your doctor or something important you want to discuss and what happens as they walk into the room? Your mind goes blank! If you have a list of questions or specific issues you would like to discuss written down, it makes it much easier to remain focused during the visit.
How many of you ask your significant other when they get home from their doctors’ visit how it went and their reply is always, “fine”. You then proceed to ask them specific questions related to perhaps their blood pressure or blood glucose levels, but they aren’t able to provide you with any specific answers.
The best offices I educate in provide a great solution to this age old problem! Most offices provide patients with a full record of everything that occurred during that day’s visit…all the numbers such as weight, blood pressure, blood sugar, and any lab work that was reviewed during the visit. The plan or your goals are also clearly written out so you understand exactly what is expected of you until your next appointment. We will review goals more in a moment, but if you do not understand something, this leads to my next very important point.
Be curious and be honest
It is so important to ask questions when you don’t understand something. Have you ever heard the saying, “there is never a stupid question”? There certainly isn’t when it comes to your health. Your doctor will know you are an active participant in your healthcare when you do ask questions. I cannot stress enough the importance of asking questions, especially if you do not understand exactly when and how to take your medications.
Not every office provides written instructions nice and neatly like the wonderful offices I have the pleasure of seeing patients in. If you do not receive written instructions, especially for how to take a new medication, then please do not be afraid to ask for them.
Over the years, I have seen thousands of patients with diabetes. Of these thousands of patients, there have been countless that did not fully understand how to take their medications and were afraid to speak up and ask the doctor. Some patients couldn’t read the instructions and were ashamed to tell the doctor they couldn’t read and simply needed everything read out loud to them. Some weren’t provided the written instructions or lost their written instructions.
Some of these patients just couldn’t even hear the doctor’s instructions due to being hard of hearing and didn’t want to ask the doctor to repeat the instructions more loudly. My mom was ready to stop going to see one of her doctors for this very reason (sorry Mom); luckily, that doctor had hearing problems of his own too and ended up retiring recently!
In my experience, some of these patients have gone home and actually taken the medications incorrectly. Some have just gone home and hoped they would figure it out on their own. When they were unable to figure it out, instead of calling the office for the instructions, they do not start the medication at all.
They return to the office two or three months later and have to make up an excuse as to why they didn’t start the medication. They may say they couldn’t afford it, or they lost the prescription, or that the pharmacy said they never received the prescription. My favorite patients are just honest about everything!
It is so important to be honest with your physicians. I can’t tell you how many times I have seen a patient right after they have seen the endocrinologist and they divulge information to me they have not provided to the physician. Many times it is crucial information that the doctor needs to be aware of such as regularly skipping doses of mealtime insulin or not checking their blood glucose level prior to taking their mealtime insulin. Often times the doctor will have made medication changes based on limited information which can have dangerous consequences.
Luckily, if the patient is being seen by a Certified Diabetes Educator, we can do an assessment to determine what the real issues are and report back to the physician. The take home message here is be honest with your doctor because the only person you will be hurting by not being entirely truthful is yourself. We are all on the same team and we are all rooting for you!
Lastly, you will want to set goals. Whether you are working with your endocrinologist or a Certified Diabetes Educator, you will set goals to work on until your next appointment. These goals should be measurable and achievable; I’ll give you some examples to explain.
- I will lose 5 pounds in the next month
- I will start walking for 15-30 minutes 3 days per week
- I will stop drinking all regular sodas and fruit juices within the next month
Set goals at each appointment and work towards these goals between appointments.
If your doctor doesn’t set goals, you can set your own goals! It will help keep you accountable and keep you on track. Remember, you are the one in charge of your health and you can manage your diabetes! Just remember, TheDiabetesCouncil.com is here to help you every step of the way!
This article was reviewed for accuracy by Glenn Sebold from AACE (American Association of Clinical Endocrinologists).
We would also like to thank Sarah Hart-Unger (Board Certified In General Pediatrics And Pediatric Endocrinology By The American Board Of Pediatrics) for taking the time to review the article. Sarah Hart-Unger is a pediatric endocrinologist at Joe DiMaggio Children’s Hospital in Hollywood FL.
TheDiabetesCouncil Article | Reviewed by Dr. Sergii Vasyliuk MD on September 24, 2018
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Last Updated: Friday, September 28, 2018 Last Reviewed: Friday, September 28, 2018