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My Thyroid Disease Journey And Finding The Right Endocrinologist

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Sebastian Kern, Contributor
Thyroid Nation

Greetings my fellow Thyroid Thrivers… Long time, no speak.

It’s been a while since I last checked in. In fact, it’s been so long that I don’t actually remember when the last time was. Ironically, as I sit here and write this, I got a Facebook notification that today marks two years since I was honored with the title of Thyroid Thriver here on thyroidnation.com.

It’s Been A Crazy Ride

Two years, how crazy is that? Sometimes it feels like it was ages ago, and yet, at other times, it feels like it was just yesterday. Either way, it’s been a crazy ride ever since. And in the name of full disclosure, although my Thyroid Thriver story was published two years ago, I was diagnosed a few months prior to that.

When I look back over the last couple of years, I can’t help but think about all I’ve been through, both good and bad. As we all know, this journey we call Thyroid Disease is an absolute roller coaster, and if you are anything like me (and chances are if you’re reading this, you are), you sometimes wonder when you will be able to get off this ride.

I’ve Seen At Least Ten Specialists

For a long time, I thought that the “conductors” of my thyroid ride were the doctors. And to be more specific, I’m referring to the endocrinologists. After all, they are the ones who have gone to school and learned everything there is to know about thyroid disease, right? Boy was I wrong. If I told you that over the last two and half years, I have seen at least ten different endocrinologists, and that each one gave me a different story, would you believe me? Somehow, I think you would.

Believe it or not, my original diagnosis of Hypothyroidism did not come from an endocrinologist, but from my primary care physician. She also was the one who had originally put me on Synthroid. It wasn’t until a few months later, when I wasn’t feeling any better, that my PCP finally recommended I see a specialist.

The Endocrinologist Spent Five Minutes With Me

I remember that first experience so vividly, I can tell you what I was wearing. The woman I met with literally spent five minutes with me. It actually took longer to fill out the intake paperwork. She did not ask me a single question, and basically shut me down every time I opened my mouth. After taking my blood, she told me I should lose weight and see a psychiatrist. That was it. I basically paid so somebody could be rude to me for no other reason than she believed she was the expert, and I needed her.

A week later, I got a call from her practice with my blood results. Turned out my Synthroid dosage was too high and I was going from Hypo- to Hyper-. They (again not the woman I met, but her service) lowered my dosage significantly in one shot (a major no-no, as it’s supposed to be done gradually), and scheduled me for another appointment three months later (again, a no-no as any dosage change should be monitored at least six weeks afterwards). They also officially diagnosed me with Hashimoto’s.

At some point before my follow-up appointment, the woman I met with had a baby. Wonderful news for sure, except for the fact that she went on an extended maternity leave. We’re talking over six months. I only learned this because my follow-up appointment was cancelled due to the office not having a covering endocrinologist to take over her cases.

While looking for a new doctor, my Synthroid prescription needed to be refilled. So I called her service, which ended up prescribing the generic version by mistake, and I had a severe allergic reaction. It took me going back to my primary care physician to figure out what the problem was, and she was able to rectify the issue by switching my prescription to Levoxyl, which I was told had less side effects. Needless to say, that experience left a very poor taste in my mouth. But I had no choice but to find a new endocrinologist, and fast.

And find them I did. In a period of about 5 months, I met at least 4 different specialists, each of whom gave me a different song and dance. There was the one who told me that she didn’t believe in checking T3 or T4 levels, and the one that said there was never a need to check thyroid antibodies once you were diagnosed as Hashimoto’s because “it was a done deal.” And of course, the male endocrinologist who didn’t do any blood work because most insurances would not cover it. I even had one who told me she couldn’t be bothered to speak to me, and all questions should be directed to her staff. She just signed off on everything.

Finally, Someone Who Listened To Me

By that point, I was fed up with shelling out copayments for terrible doctors, and losing all hope. On the insistence of a parent in the office I work for, I made an appointment with yet another endocrinologist. I wasn’t expecting much walking in, but all that changed when she brought me into her office, sat me down, and asked how I was doing. I was in complete shock to have somebody who wanted to hear from me, and actually listened. We sat for a good thirty minutes talking about what I was feeling, my past history with my medications, the direction she wanted to take in my treatment, and all the different tests she was recommending for me. I walked out of that appointment so excited to have finally found a decent endocrinologist.

For about six months, things were going well. I was very happy, my numbers were improving, and my endocrinologist actually listened to me. She didn’t mind that I did research on all things thyroid, and was even willing to add T3 to my drug protocol at my request, just to see if it made any difference (side note: it really didn’t help that much). But unfortunately, my insurance plan at work changed, and my favorite endocrinologist was not under the new plan. So just like that, I had to find someone new.

Because Of Insurance, I Had To Find Someone New

Under my new plan, there were only seven thyroid specialists: four in one practice, two in another that required a referral from a specific doctor, and then one in her own private practice. I started calling around immediately so I wouldn’t lose any momentum in my recovery. I managed to get an appointment with one of the four in the single practice around the same week I was due to meet with my former endocrinologist. I was actually looking forward to it. BIG MISTAKE… BIG… HUGE!!!

What happened next I wouldn’t even wish upon my worst enemy. For starters, the doctor sat on her cell phone texting with her daughter about summer vacation the entire time I was in her office. She didn’t want my medical history, and gave me a whole speech about how she didn’t take on clients who did their own research and asked a lot of questions. She also informed me that she didn’t believe in T3 medication and refused to refill my prescription. When it came to blood work, she only tested TSH levels, because “that’s all that really mattered,” and she didn’t give patients their numbers. I was not to ask any questions or she wouldn’t keep me on.

I knew almost immediately that she was not the right fit for me, but for some idiotic reason, I allowed her to take my blood. Now, just to drive home how bad that appointment went, as I walked out and reluctantly paid my copayment, the receptionist gave me the number to the other endocrinologist on my insurance plan who had her own private practice.

A few days later, I received a call from that office telling me that my thyroid levels were so bad, the doctor was recommending some kind of radiation test and possible thyroid removal. Being diagnosed as Hypothyroid/Hashimoto’s, I found that kind of odd because from what I understood, that was usually done with patients diagnosed as Hyperthyroid or with Graves’. She also recommended seeing a specialist because there were signs of Leukemia. Naturally, I lost it after hearing the news. Especially since she gave me this whole speech about how she only tested my TSH level.

We set up a day to do the radiation test, which I only remember because it conflicted with my cousin’s wedding. I also remember being told what to expect during the test and afterwards, and starting to consider where my dog should go for the few days afterwards, while I was “radioactive.” In my mind, I figured I would be like Chernobyl, and I remember my aunt and I laughing at how absurd I sounded. I was truly in panic mode. In the end, I found out that I was given the wrong test results, and I was fine. Needless to say, I was less than thrilled, and I never had anything to do with that person again.

With that whole fiasco behind me, I turned my attention back to getting a new endocrinologist, and with only one left in my network, I made an appointment to meet with her. The appointment was nothing to write home about.  She took me off the T3 medication because she felt I had too much thyroid hormone, and it was causing me to break out and lose my hair. My TSH came back at the higher end of “in range” (even though I felt terrible), and I was told I was fine. At that point, I felt completely stuck, and knowing my body by that point, most certainly not fine. I was miserable.

It's important as patients to do the research and advocate for ourselves Click To Tweet

Lucky for me, something amazing happened shortly afterwards. I received an email from my former, and favorite, endocrinologist saying she started taking my insurance… FOR ME! How amazing is that? I was completely overjoyed, and immediately made an appointment to see her again.

It turned out that not only was my TSH “out of range,” but my T3 and T4 levels were off as well. She recommended quite a few supplements, and we started back on the road to optimal (at least for me). Since then, we have continued to work together, and once again, my input is listened to and valued. My endocrinologist, upon my insistence, even allowed me to start taking LDN, which I have come to learn is very experimental to thyroid doctors, and not freely prescribed. She even went as far as to find a pharmacy that was willing to take my insurance and fill the prescription.

Thyroid-Nation-Brain-Fog-Brain-Awake-Front-Page-AdI’m happy to say that at this current date and time, I feel great. And that is partially due to my endocrinologist. I have to say that I’m rather lucky. I know of people who have been living with thyroid disease longer, and have had to deal with far more terrible doctors than I have. Many people don’t get the option of picking their endocrinologists. They are limited by where they live, or who is in their insurance plan’s network (if they even have insurance). I’m sure you will all agree with me that living with any kind of Autoimmune Disease truly suck, and it helps to have someone in your corner as part of your medical team. After meeting with a bunch of terrible doctors myself, I’m forever grateful for my endocrinologist, and for finding a good match.

Dealing with all the different specialists that I have, I learned a lot. I came to realize that doctors/endocrinologists/specialists are human, plain and simple. They are flawed and do not have all the answers, no matter how much they want you to believe that. The reality is the world of medicine is constantly evolving, and these doctors need to be on top of the times. There are different medications out there, and if the ultimate goal is to actually heal people, maybe it’s time to think beyond Synthroid. Maybe it’s time to start listening to their patients and what they are feeling instead of following a guideline that is antiquated and unrealistic.

Doctors/Endocrinologists/Specialists can also be rude and stubborn, but then again, so can we as the patient. After all, the money they are getting paid comes out of our pockets. So in essence, they work for us. I think it’s important for us as patients to remember that we have voices, and the right to open our mouths and say that we don’t agree with the services being provided to us. And if the option is available, we also have the right to a second (or third or fourth) opinion. Our health is ultimately in our hands. Never allow any kind of doctor make you think otherwise.

Before I go, I would just like to say that I am no thyroid expert. I have never claimed to be, nor will I ever. Many people would like to tell you what foods you can eat, or what medications and supplements to take, or how you should live your life while dealing with thyroid disease. I will never do that. We are all on our own journeys. What I do is my business, and it doesn’t have any affect on anyone other than myself. The same can be said for all of you. All I can do is relay my story, and what I learned along the way. Some people may find it long and boring, while others will completely relate. Either way, I thank you for taking the time to read this.

So as I sit here today, I have finally come to realize that I am the “conductor” of my own thyroid ride, nobody else. It’s important as patients to do the research and advocate for ourselves because the bottom line is, nobody else will. We need to demand the best, and not be satisfied until each of us finds that amazing doctor that treats us with the respect that we deserve.

My hope is that one day, more doctors will truly care about their patients and their health more than they do about the money and being right. Until that day comes, my big mouth and I will continue to fight the fight. I encourage all of you to do the same.

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About the Author

Sebastian-KernSebastion Kern was diagnosed with Hashimoto’s Thyroiditis and Hypothyroidism in March 2015, at the age of 41. He is a blogger and creator of Baztards.com, a website geared towards empowering people and looking for the positive in any situation. Sebastian lives on Staten Island with his 2 adorable dogs, Jack and Gus-Gus. Check out his Thyroid Thrivers story, here.

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Questions or anything to add about your thyroid doctor/endocrinologist? We want your thoughts, please. You might just help someone else in need.

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