Did you know it can take a decade for patients to receive a Hashimoto’s diagnosis? In fact, that’s the average amount of time that passes from the first emergence of symptoms to confirmation of Hashimoto’s disease! Those years of uncertainty and frustration certainly take their toll on the mind – and all the while, autoimmunity is taking its toll on the body.
So what gives? Why does it take so long for so many of us to get a Hashimoto’s diagnosis? It’s not all that shocking when you consider how Hashi presents, how the medical community looks at disease, and the fact that there’s still so much we don’t understand about autoimmunity.
We wanted to dive deeper into why getting a Hashimoto’s diagnosis is so difficult and this is what we found:
Hashi Isn’t Hypothyroidism
But it sure looks like it! While Hashimoto’s is an autoimmune disease, it typically presents as hypothyroidism. It’s estimated that as many as 90% of all people with hypothyroidism may actually have undiagnosed Hashimoto’s thyroiditis. So even though the real problem is that your immune system is attacking your thyroid gland, all signs are pointing to a thyroid problem and doctors (like all of us) will look for the simplest way to explain your symptoms (i.e., your thyroid just isn’t working).
Symptoms Can Be Managed
Sounds great in theory, right? Your thyroid labs come back wacky, you get a prescription, and you feel better! But there’s a big problem with this approach. Doctors routinely treat the symptoms of Hashimoto’s instead of attempting to identify the root cause and the end result is that the immune system continues to attack the thyroid even while your symptoms are being managed.
Doctors Don’t Test for Thyroid Antibodies
Hashimoto’s is diagnosed by measuring thyroid peroxidase antibodies (TPO Ab) and thyroglobulin antibodies (TgAb) but in many cases your doctor won’t order those tests (or even a full thyroid panel) before testing TSH (thyroid stimulating hormone). And if TSH is within what a lab considers normal, most doctors will rule out thyroid problems entirely – so good luck getting a Hashimoto’s diagnosis!
Early Stage Hashimoto’s Is Invisible
The reason that antibodies can be present for years and years before elevated TSH will show in tests is because your immune system hasn’t destroyed enough of your thyroid gland to impede function to a degree that is clinically significant. But just because something doesn’t show in a lab workup doesn’t mean the early stage symptoms you’re experiencing aren’t real. And yet up to 45% of Hashi patients may be labeled hypochondriacs by friends, family, and doctors, too. How many of us have heard ‘It’s all in your head’?
There are So Many Symptoms
The thyroid gland does so much in the body that even a slight change in function can cause a baffling array of symptoms from fatigue to brain fog to weight gain to hair loss. And if any of the symptoms manifest with emotional changes, chances are you’re going to walk out of your doctor’s office with a prescription for antidepressants. Hashimoto’s symptoms are associated with so many other illnesses and doctors tend to want to rule out other issues before exploring the possibility of autoimmunity.
Inflammation Doesn’t Point to Hashi
But it’s still hurting you. Autoimmune diseases like Hashimoto’s can be symptomatic long before your body has attacked an organ to the point of no return because autoimmunity causes inflammation in the organ and in other parts of the body. You may not yet be hypothyroid according to your lab tests but that doesn’t change the fact that Hashimoto’s is having an effect on your physical self and your mental health.
There are No Hashimoto’s Specialists
Another reason that it can take so long to get a diagnosis (and then to find the right methods of treatment) is that there aren’t true autoimmunity specialists in medicine. Instead, various specialists who deal with one organ or one system of the body affected are the go-to practitioners for autoimmune diseases.
How long did it take you to get a Hashimoto’s diagnosis? What was the toughest challenge you had to overcome during the process?