Brian’s difficult and frustrating path to multiple diagnoses, including Hashimoto’s disease (chronic lymphocytic thyroiditis), is an apt reminder this Thyroid Awareness Month that the small gland plays a huge and vital role. When the thyroid functions incorrectly, it may stymie both patients and healthcare professionals, as well. The same can be said for the pituitary gland.
Here Brian shares some of his experiences living with Hashimoto’s, Cushing’s disease (a result of pituitary dysfunction) and other conditions, and his opinions on the diagnostic process for autoimmune and glandular issues.
The Need to Shed Light on Thyroid & Pituitary Problems
[I want to] bring awareness to proper thyroid testing.
The endocrinology field is failing patients in getting the full functioning of the thyroid. Giving a patient a little pill for thyroid replacement when one is hypothyroid is one thing, but when a patient has Hashimoto’s, that little pill replacement doesn’t address the root cause of the hypothyroidism. The root cause being food.
The worst thing is the fact that 90-95% of those that are hypothyroid have Hashimoto’s. Hashimoto’s needs to be addressed by the foods one eats. Most medical doctors have no clue how to address this with patients, since everyone’s cause of the autoimmune condition is different.
I noticed my TSH (thyroid-stimulating hormone) tests over a number of years in which my TSH levels were all over the place. I had the test results in which my thyroid went from maxing out the test for hypothyroid and in six weeks I went into full hyperthyroid. I knew something was not right. I went to my PCP and he stated I possibly have a pituitary tumor.
The pituitary tumor affects TSH as well as my ACTH (adrenocorticotropic hormone), which causes my cortisol production to go off the charts. This usually lasts for three to five days. I feel like I am The Incredible Hulk the entire time.
The testing and understanding by the endocrinology field with Cushing’s is [also] very sad. Most [doctors] do not know enough about Cushing’s. They basically blow you off as not having the [pituitary] tumor because it is too rare, so they give idiopathic reasons and misdiagnose the patients.
I have nearly been killed twice because of the misdiagnoses I have experienced. I have had Hashitoxicosis (hypo and hyperthyroid at the same time) a couple of times [and] ERs do not know how to test me or what tests to run on me.
Finding Support, Staying Vigilant
My PCP has been my biggest support throughout this nightmare. I basically have been blown off by most [of] the medical community as “That is too rare to have” or “That is in your head, you need to see a psycho doctor.” And the list goes on with the excuses I have heard for my conditions. ([My PCP] just passed away from COVID-19. I am now without a primary care physician.)
My fourteenth endocrinologist believed in me having a pituitary tumor and [was] willing to run the many midnight saliva cortisol tests in order to get the diagnosis. My last MRI was [in 2020] in which the size [of the tumor] was down. I am not on any medications. I contribute the reduction of size to God.
I have other autoimmune issues including Raynaud’s syndrome [and] erythromelalgia. I have six stents, two in the abdominal aorta and the others in and around the heart. I have [also] just been diagnosed with antiphospholipid syndrome (APS), systemic lupus erythematosus (SLE) and Factor V Leiden, all clotting factors of the blood.
Self-advocacy and education into the condition(s) one has to deal with [is important]. Gain enough knowledge in order to better manage [your] medical health and safer treatments.
Become your own advocate for your healthcare. You know your body and with the current “15 minutes” with the doctor, you need to be ready for the appointment.
Lives with Hashimoto’s disease, cyclic Cushing’s syndrome, antiphospholipid syndrome (APS), systemic lupus erythematosus (SLE), Factor V Leiden, Raynaud’s syndrome, erythromelalgia