How this aspiring endocrinologist manages her Hashimoto’s and prolactinoma

Design: BOOST Thyroid.

Design: BOOST Thyroid.

Hashi & Me is a series of stories for people with Hashimoto’s told by people with Hashimoto’s and other thyroid problems. In each piece, one of us will share our experience with Hashimoto’s, our personal findings and tips. We believe one person’s experience can be useful for others, especially for newly diagnosed people.

This week, meet Dulse from Southern California. She’s aspiring to study endocrinology and practice in the field of functional medicine.

How and when did you discover you had Hashimoto’s? Tell us your story.

My diagnosis was a complete surprise. In late March of 2018 I was diagnosed with hyperprolactinemia and in May an MRI confirmed the presence of a prolactinoma (a pituitary gland tumor).

I was then referred to an endocrinologist and I didn’t get an appointment until September of that year. Meanwhile, I think I began to suffer from symptoms, such as consistent low blood pressure, and minimal weight gain then sudden weight loss. By September, I noticed my hair began falling out, my hands would tremble, and I had lots of anxiety.

I thought maybe they were more side-effects of my medication treatment, but they weren’t. My endocrinologist ran two series of labs and in the first it revealed that I had high antibodies for Hashimoto’s. I addressed this with my endocrinologist at my follow-up appointment and strangely he brushed this off, in fact he didn’t even go over any of my test results that had several red flags. That was my last visit with him and I requested for a new doctor.

In the meantime, now that I had an official diagnosis, I began to do my research and read on about Hashimoto’s. It scared me. I read about preventive care and making the appropriate dietary changes. I immediately eliminated gluten, soy, and dairy and that incited my first major autoimmune flare that lasted over a month. I was terrified because my body was being affected in every way imaginable! I have been very symptomatic ever since and my body is now super sensitive to many foods and it flares up if I push it too hard physically. 

In February of this year, I met a new endocrinologist at a pituitary clinic at a hospital. He was very attentive and took his time to explain the situation with my hyperprolactinemia and prolactinoma. He sat with me for almost an hour. He did, however dismiss my Hashimoto’s symptoms and refused to retest my antibodies. He did a physical check of my thyroid and felt some nodules and ordered a thyroid ultrasound. He then listened to my heart and heard abnormalities, so he ordered an echocardiogram. It feels like the beginning of a long, never-ending nightmare—with symptoms from various conditions.

What did you learn since? Do you have some tips or findings to share with other Hashimoto’s people?

I have learned so much and I still have a long way to go. My biggest tips for other people with Hashimoto’s is to begin educating yourself on nutritional therapy; reevaluate your quality of sleep, management of stress, use of everyday products, lifestyle choices, and relationships with yourself and others; and be your biggest advocate, always.

What does your day with Hashimoto’s look like?

It really depends. My symptoms vary, but some common ones for me are: fatigue, joint pain, brain fog, anxiety, depression, and food sensitivities. I’ve learned to ration out my energy when needed and allow myself to just rest and sleep. I don’t push myself physically when I don’t have to. On a good day (when my symptoms are moderate), I’ll be very productive with my day, I feel happier and my mind seems clearer, and I want to be around people.

What was the biggest struggle and biggest victory you experienced?

My biggest struggle thus far has been finding quality healthcare and doctors who will listen. My primary care doctor, neurosurgeon, and endocrinologist all took me very seriously for my pituitary tumor, but when it came to my Hashimoto’s diagnosis, I didn’t feel heard. It’s made me feel invalidated and worthless—and until I can afford a functional medicine doctor, they’re all I have right now. 

But I would have to say my biggest victory yet is learning how strong I am. My willpower to keep going when I feel like giving up. I’ve also learned to listen to my body and I’ve reconnected with my intuition.

What advice would you give to someone newly diagnosed to ease their first steps with Hashimoto’s?

You will be okay if you try. Do your research. It will require a lot of work, patience, and strength. You will have to reevaluate many aspects of your life, but you don’t need to do it all at once, so don’t stress. There are so many resources online nowadays and so many people to connect with. Remember that what works well for you, may not work for someone else—bio-individuality.

Hashi and meClar McWeeney