Anyone else out there tired of feeling like you’re last on the list with your doctor or specialist? If so, I FEEL you and this is why I wanted to write a little note for us - the ones who are taking our health into our hands. This is also for you, the patient who is beyond frustrated with your care or current situation. I’m here to tell you you are NOT alone and also…
YOU HAVE THE POWER TO CHANGE THIS!!!
No, I’m not making this up - I’m simply reminding all of us that we are our own advocates for our health. Put it this way, when you go to the doctor you are one of many patients your doctor will see that day. However, for you, that is your only doctor, the person you trust who you want and need to be on the same page with for your health. Not too much to ask, right? Actually, in some cases it can be and I write this with the experience of someone who has had to “fire” doctors because they didn’t fit my health strategy.
Finding the right team is essential for your own path. If it wasn’t for my GP, Endo and the natural health practitioners I saw in LA when I lived there I wouldn’t have gotten myself to the point where the SIX NODULES I was diagnosed with on my thyroid disappeared. That’s right… they went away.
Guess what? I chose not to do RAI.
My first endo was insistent, calling me everyday after my diagnosis to get me booked in for RAI. I was honestly frightened and I felt alone, and to be honest he was pushy! I was exhausted and having them call me to get me booked in for RAI got to be too much after 8 days of daily chats - this being after my request to be left alone so I could make a proper decision.
I don’t know about anyone else’s experience with RAI, but at the time when I was told it was in my best interests to do it it scared me to kill off an organ and it didn’t sound good for the environment - I was advised to get my RAI done, then not go home but to go to a hotel where I could sweat out the treatment. This didn’t sit well with me. I didn’t feel this was right for me but the more questions I asked the more I was told that this would fix the problem they were seeing now.
You guys, i didn’t want a band-aid or a “quick fix” I wanted to get to the bottom of the problem and by this point I knew I needed doctors who would work with me to try other options first before deciding on the XXX pick. This is when I began to change my lifestyle, look at the way I was taking care of myself differently and I continue to do so to this day. I like to call it my “Forensic Health Audit” and it’s usually every 3 months where I take stock and see what is working, what isn’t and see if there is anything I can do to make it better.
I’ve also moved countries and can report, that after 5 years of searching since I moved to New Zealand I have FINALLY found my support team. I’ve got a GP who gets it, a naturopath who loves seeing my small successes as much as I do, and I’m meeting my new Endo in just a few weeks. But I had to make this happen - I was with a doctor who forgot about me, who argued with me about my T3, T4 and TSH tests and who didn’t take my quest for living with Graves Disease seriously. I went to her with issues around anxiety and she overprescribed meds that heightened the issue.
I want to come off meds this year and made it my decision to start to slowly taper them off. Don’t you love it when your idea is the one that works? Yeah… It gave me great pleasure to let that doctor know I was leaving. and I’m happy to share with all of you that as of this date I am on track to come off my pills (Carbimazole) before 2019 ends… fingers crossed!
All of this is a little long-winded but we need to be reminded that we aren’t alone in this BUT we do have to stick up for ourselves during our treatment. Don’t just want to do a quick fix, but dig in and let’s figure out what else you can do to get your thyroid feeling better!
And yes, for you, it could involve RAI. Just because this is working for me doesn’t mean it will for everyone. I know folks with Graves Disease who chose to be vegan as part of their strategy, others did RAI and it worked out best… we are individuals and all we can do is keep the conversation going!
Tell me about your journey so far and how it’s been in the comments. We can all learn from each other!!