Finding a good endocrinologist is one of the best things you will do for your thyroid health.
Searching for an endo (Endocrinologist)…
After my thyroid surgery, I was automatically referred to an endo by my medical insurance. The doctor was in Scottsdale, Arizona while I was located way out in West Phoenix. For my health absolutely it was worth driving the 40 miles each way to visit him, but with the pandemic and all the issues happening in 2020, I found it would be better to find one closer to me.
I did my research, I googled the best endocrinologists in Goodyear, Arizona or 15 miles from here, I looked at their Google reviews, I went onto my health insurance website and looked at reviews on there, I looked at the doctor’s website, checked out the endo and how long they had been caring for patients with thyroid issues and especially patients who had just had a thyroidectomy and would need lifetime care.
I didn’t know what I was doing. Hell, I didn’t get much of an explanation about what this would mean to me for the rest of my life. I needed someone who really cared about the future of their patients. This entire process has been very enlightening, like getting hit with a bat in the face and seeing stars. I finally understood that it is not up to the surgeon or the endo to tell you how something is going to affect the rest of your life, you have to find out for yourself. The information you receive about how you should take care of yourself and what’s coming next is about 1/3rd of the information you actually need. Use the power of the internet, find like-minded people, join support groups, and ask questions, so many questions. That’s the only way you will make yourself feel better.
So after a lot of research, I found the endo that I was certain was going to help me get through the first stages of my life without a thyroid in the best way possible. This endo has 5-star reviews, people just praising the way she changed lives and helped them through their situations. So I booked my appointment. I had my little journal ready to write down notes, I had questions I was ready to ask because I didn’t know what I needed to do to lose weight and that was forefront on my mind at the time. This was before I felt like shit, I still had hope I was always going to feel even half the amount of energy I still felt so I was genuinely naive about the whole thing.
The day of my appointment comes and I leave work early so that I can drive straight to the endo’s office and get there a little early to fill out paperwork. I get there and I notice the building is nice and I can tell this office has good visitation so that makes me feel even better about my choice to come here. Everyone looked happy and they were smiling, so I kept telling myself this is it. Only… I just didn’t feel right. I kept telling myself I was overthinking things which I always have the bad habit of doing so I shut off the voice in my head and waited until my name was called for my turn to be seen.
What the hell kind of endo is this??
After getting my blood pressure checked and being told that my heart rate was at 125bpm and waiting 10 more minutes, in walks a tiny lady who would be my new endo. The endo has a foreign accent and talks very fast so from the get-go I was having trouble understanding her. For privacy, I will call her Dr. Hollis. Dr. Hollis tells me about my blood tests and I know this because she is showing me the physical tests on her laptop although I can’t understand what she’s saying, I don’t know what any of it means, and she’s not slowing down to explain it either.
Then she stops and starts scrolling through my chart and I see her eyebrow perk up and she looks at me and says “you had thyroid cancer, why aren’t you taking care of yourself, your blood tests are unacceptable!” Holy Shit I almost had a meltdown in that room. It took everything in me not to get up and flip her off and walk out of that room.
I answered pissed off and if I could have chopped off her head with my eyes I would have. “I am here because I don’t know anything about my condition, and as my endocrinologist, you are here to help me figure this out right?” Wow, talk about a match made in patient/doctor relationship heaven. That conversation set the tone for a year of care from her. In that year, I saw her 6 times. She had my thyroid medication Synthroid dose at 175mcg, and to counter the heart rate I was on 25mg of Atenolol. She would not lower my dose of Synthroid because all she would tell me was that the “cancer would come back” if my dose was lowered.
When I can no longer ignore my negative relationship with my doctor…
In October of 2019, I met with the endo to review my latest set of blood tests and she gave me the grim news that it looked like cancer had returned. Can you imagine the horror I felt when she said that to me? My blood tests were showing something in my blood so I was probably going to go through radiation again and if that didn’t work I was going to have to have neck surgery and remove any lymph nodes left and any tissue that may be lingering in my thyroid bed. I mean it was just that cut and dry. Again, when I would ask her to explain things to me it would take extra dedication from me to sit and listen intently and ask extra questions about what I THINK she was telling me because she was hard to understand. She told me I would need to do another Radioactive Iodine Uptake Test and depending on the results I would need to do radiation. I stopped her before she could say anything else, I said no.
I told her I would not be doing any more radiation. I was done drinking poison only to feel worse. This was the good cancer it wasn’t supposed to ever make an appearance again. And here I am getting ready for round two. Nope. I was going to do things my way and I would come back to get the MRI in three months. She looked at me and said “ok”. So just OK. An endo who doesn’t try to tell you about why it would be dangerous not to do treatment and go nomad may not have your best interests in mind. Also, a doctor who pushes you to do a certain treatment and does not try to listen to the options you think might work may also not have your best interest in mind. Keep that in the back of your head when being “ordered” to do something.
My family was worried about me. They were worried that I had said no to radiation, but they were also worried if I did do it. They were stuck as I was stuck about this whole thing but I deserved a chance to try something else. I tried a holistic approach and dedicated the next 3 months to meditation and cleansing my body of toxins. I scheduled the MRI after 3 months and it came back cancer-free. No cancer cells showed up. It is February of 2021 and to this day I have not had to do radiation again and I hope to keep that going.
After that, I switched to another endo. When she told me that there was a great possibility that I would have to do radiation again, everything about her energy gave me NO HOPE. NONE AT ALL. I don’t need anyone like that in my life and none of you do either. I removed her negativity and surrounded myself with the help and love of those who believed in me. If your endo isn’t someone you can count on, I hope you have a way of finding one who is a blessing and not a burden to you.
Finding an endo that cares enough to stop me from giving myself a heart attack…
Again I looked for a year for an endo. My thyroid medications had refills so I wasn’t worried about getting those, but I knew it was probably time to get my blood checked again. I needed to make up my mind about an endo. I had found one that I was feeling good about, but after this nightmare experience, I was afraid of what I was going to walk into.
When I finally met my new endo, he was the complete opposite of what I had experienced. He took his time to answer my questions and took blood tests on the spot. I have a confession to make, because I was never able to get any help with the chronic fatigue I was experiencing, I started taking Armour thyroid along with my Synthroid. I did this all on my own out of desperation and didn’t think that I was probably killing myself. I told my new endo this and he was naturally alarmed. I had lost a great amount of weight, I couldn’t sleep at all, I was shaky all the time but the worst part was my heart. I was putting myself at risk of heart failure and I didn’t even know it. I felt really stupid.
He has helped me realize the importance of my situation, and I no longer take any medication without a prescription from him first. Finding this endo has helped me understand why my dose needed to be lowered and how keeping me at such a high dose was putting me at risk of death already. I am not 100% better but I do feel a lot better now. It’s a work in progress but now I have hope where before I didn’t. The doctor also explained to me that my situation with cancer is not one that will just disappear which was how it was explained to me before. I will always need to find ways to keep it at bay… that is my realistic future and that’s the type of honesty that your medical providers need to give you. Everyone is different and no situation is the same so although I don’t doubt my previous endo was and is great for her patients now, she was not the one for me.
Your endo is very important to your well being. The endocrinologist has the power to stunt your progress or make it grow by leaps and bounds so ask questions freely and openly, let him/her know how serious you are about your personal situation and that you want to be actively involved in getting better.
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