I am trying to understand why I cannot be seen by an endocrinologist.
That was the first line of a message sent to one of our channels, from a woman who had five thyroid nodules found in October, TI-RADS two to four, and a history of stage 3 invasive ductal carcinoma. The rest of the thread was variations on the same theme, and one line that was not a question at all: be persistent, I feel like no one cares.
So let me answer properly whether you need a referral to an endocrinologist, because the system is doing exactly what it is designed to do, and it is not designed for you.
Key takeaways
- With an HMO plan, you need a referral. With a PPO, the insurer lets you choose, but many specialist practices still insist on one. With a direct care practice, no referral is required.
- The majority of our direct care patients found us, decided they wanted to be evaluated, and arrived with no background information. We start from scratch and collect the data we need.
- A normal TSH tells you about thyroid function. It tells you little to nothing about a nodule.
- TI-RADS guidance may say do not biopsy a nodule until it reaches 1.5 centimeters. In a very high risk patient, such as one with prior chest radiation, I biopsy at a smaller size.
- Garden variety hypothyroidism can usually be managed by a primary physician. Hyperthyroidism, thyroid cancer, nodules that need a biopsy or ablation, and nodules pressing on other structures belong in endocrinology.
When do you need a referral to an endocrinologist?
A referral depends on how you are paying. In an insurance based system, probably yes. With an HMO plan, definitely yes. With a PPO, the insurer lets you choose who you see and when, although many specialist practices still refuse to see anyone without a referral. With a direct care practice, no referral is needed at all.
If you are coming to a direct care practice, which is what we are, you do not need a referral. You bring your information, labs and scans, and you book an appointment. The majority of our direct care patients found us, decided they wanted to be evaluated, and arrived with no background information at all. We start from scratch and collect the data we need.
Access to a specialist is your right. It should not require jumping through bureaucratic hoops.
If this is the question you came in with, it is the one we answer in your first hour here. New patients are seen within two weeks and you do not need a referral. Call or text (817) 380-4880.
Why is it so hard to get in to see an endocrinologist?
The first reason: There is a big shortage of us! A waiting list might be longer than a year to be seen.
It is hard to see a specialist because the house wants to keep its money. The United States runs an insurance based, interventionalist medical system. Insurance tied to your job is playing a game in which it spends the least possible on you, because the statistics say you will change jobs in a few years and stop being its problem.
At the same time, reimbursements are being cut across every specialty, year after year. If a clinic wants to keep paying its staff, it has to see more patients to break even. So the overwhelming majority of clinics, primary and specialty, are forced to run a mill. The room has to turn over every ten minutes.
That produces a very consistent experience. You walk in, you say, “I have this problem.” They say, “You need this medication,” you are handed a follow-up card for next time, and you walk out. Five minutes. You do not understand your condition, you do not know what to do about it, and you are frustrated.
That is not how the therapeutic relationship was designed to work. It is why we built our practice the way we did. Someone arriving with uncontrolled diabetes, or a cluster of thyroid nodules, or a pituitary tumor, is frustrated and scared and wants to feel better. We have the luxury of time to sit down and talk about what the condition is, what we are going to do about it, and how we fix what needs fixing.
Does a thyroid nodule need an endocrinologist?
Not every thyroid nodule needs an endocrinologist. It depends on what the nodule is made of. If it is a cyst, a fluid filled sac, it carries no cancer potential and nobody needs to follow it closely. A TI-RADS 4 or 5 nodule, a nodule that needs a biopsy, or a history of radiation exposure is a different matter.
The woman in the first message was not describing cysts. She had TI-RADS scores from two to four. A two is not a concern. A four is moderately suspicious. And she had had radiation therapy for breast cancer. Radiation to the chest can scatter to the thyroid, and that raises thyroid cancer risk over time.
That is how I got thyroid cancer. I had chest radiation as a child, and ten years later I had thyroid cancer.
So should she see an endocrinologist? Yes, because I take a very specific history about radiation exposure and other clinical risk, and that history changes the plan. The TI-RADS guidance might say do not biopsy a nodule like this until it reaches 1.5 centimeters. In a very high risk patient, I biopsy at a smaller size. That is just good thinking, and it only happens if someone takes the history.
When does a thyroid problem need a specialist?
Garden variety hypothyroidism can be managed well by a primary physician, and most of the time it does not need us. Hyperthyroidism is different. Graves’ disease, toxic nodules, and the rarer causes make many primary physicians uncomfortable, and they tend to refer. Thyroid cancer, nodules that need a biopsy, and nodules considered for radiofrequency ablation should be seen by endocrinology.
Simple thyroid nodules, small and uninteresting, can be followed by a primary doctor with ultrasound. If they grow or become a problem, send them to endocrinology.
And if you have a large nodule pressing on other structures, with swallowing problems, voice changes, breathing problems or radiating pain on that side, you probably need endocrinology and may need an ENT surgeon as well. Sometimes a benign nodule that is simply in the way can be ablated and shrunk to relieve the pressure, without surgery.
Read more about what an endocrinologist treats.
Can a thyroid nodule cause neck, jaw and ear pain?
Yes, a thyroid nodule large enough to press on a nearby structure can cause referred neck, jaw and ear pain. Hypothyroidism or hyperthyroidism on their own would not be expected to cause it. A normal TSH tells you about thyroid function. It tells you very little about a nodule, so a normal result does not rule this out.
An oncology nurse wrote that her primary physician would not refer her because her TSH was normal, and that she was now developing left sided neck, jaw and ear pain. If you have obstructive symptoms, radiating neck pain, voice changes, swallowing changes, or a feeling of pressure and fullness when you lie down at night, talk to an endocrinologist. That is a reasonable thing to ask for.
How do you ask for a referral, and what if the answer is no?
Ask your primary physician directly: what about a referral to endocrinology? I think I could learn something useful. In many insurance plans the primary physician is quite literally a gatekeeper, and in most cases that works, because there is a lot a primary doctor can manage. Complex endocrine problems are not usually among them.
There is a reason the specialty requires an extra two to three year fellowship and a different set of board examinations. So it is entirely reasonable to ask.
If the answer is no, your remaining option is outside the system: a direct care practice like ours. People come to us all the time for prediabetes because they know their family history and their primary doctor does not think a referral is warranted. They come anyway, because they do not want to fall behind. Prediabetes is the best possible time to be seen and to be aggressive about treatment.
Where this leaves you
The system is doing what it was built to do, and it was not built for you. With an HMO you need the referral. With a PPO you might. With direct care you do not, and you get an hour instead of five minutes. Prediabetes, nodules with a radiation history, hyperthyroidism, and anything pressing on your neck are all reasons to stop waiting for permission.
See your own numbers, not a guess. There is no referral and nobody standing between you and the appointment. Bring your records, or bring nothing, and book directly. A new consultation is an hour, $400, includes the first follow up, and the whole thing can be done by video if you are in one of the seven states we are licensed in. To book your consultation, call or text (817) 380-4880.
Frequently asked questions
Do you need a referral to an endocrinologist?
With an HMO, yes. With a PPO, usually not required by the insurer, although many practices insist on one. With a direct care practice, no. You book directly and bring your records.
Why will my doctor not refer me to an endocrinologist?
Usually because the plan makes the primary physician a gatekeeper and the problem looks manageable from their chair. Ask directly. If the answer is still no, a direct care practice does not require the referral.
Can a thyroid nodule cause neck, jaw and ear pain?
Yes, if it is large enough to press on nearby structures. A normal TSH does not rule this out, because TSH measures function, not the nodule. Obstructive symptoms are a reason to see an endocrinologist.
When should a thyroid nodule be seen by an endocrinologist?
When it is TI-RADS 4 or 5, when it needs a biopsy, when it is growing, when it is causing pressure or voice or swallowing symptoms, when ablation is being considered, or when the patient has a history of radiation exposure or a family history of thyroid cancer.
When should you see an endocrinologist for prediabetes?
As early as possible. Prediabetes is the best possible time to be seen and to be aggressive. People come to us for prediabetes because they know their family history and their primary doctor does not think a referral is warranted. They come anyway, because they do not want to fall behind, and a direct care practice needs no referral.
What is direct care?
A practice that contracts with the patient rather than with insurance companies. No referral, no network, and visits long enough to explain the condition and the plan. You bring your information and book an appointment. The practice collects the data it needs from scratch.
Related reading
- TI-RADS score explained: what the number on your thyroid ultrasound means
- Radiation and thyroid cancer risk: why chest radiation changes the plan
- Normal TSH and still tired: what the test does and does not measure
Dr. Lindsey M. VanDyke, DO, FACOI, FEAA, is dual board certified in internal medicine and in endocrinology, diabetes and metabolism. She founded the Advanced Institute for Diabetes and Endocrinology in Mansfield, Texas, a direct care practice where new patients are typically seen within two weeks and no referral is required.
In person in Mansfield, or by video in Texas, Oklahoma, New Mexico, Colorado, California, Oregon and Washington.
Book your consultation. Call or text (817) 380-4880.