Friday, February 20, 2015

My endless search for doctors

When I got my original hypothyroid diagnosis - I lucked out and found an endocrinologist that was decent.

Granted, he was literally like, 90 years old and he was super cocky and claimed to be the ultimate thyroid expert every chance he could - but he seemed nice and knowledgeable and after starting on the meds he suggested I started to feel better.

I had always joked with my husband that I was going to be screwed cause this guy was so old, he was going to die and I'd have to start all over. (I know, I know - super terrible of me to say - but seriously - this guy was ancient)

I'm happy to report that he didn't die - but he did retire. In the most asshole way possible if you ask me.

See - when I started seeing him it was a private practice and everything worked and then he merged with some huge endocrinologist group or something and it all went to hell from there. I would show up for appointments that they confirmed the day before and they would have no record of my appointment in the system. Then they lost my files - then I had to wait one time for an hour and a half for them to take my blood.

It sucked - but I was feeling better and my appointments were spread out and I knew they were having growing pains so I let it go.

Then I noticed I was running out of meds and there were no refills left - so I called to get an extension and make an appointment. After they finally found my records in their system they informed me that they couldn't extend my prescription without seeing me first. I explained I had an appointment scheduled for the following week which they had confirmed recently and they informed me that my doctor had retired. No notice, no plans to call me and reschedule that appointment - no nothing. So I explained that I needed my medication and hadn't felt well lately and after talking to 3 different people they said they were sorry but I had to come in. I said - fine - when can I come in - they said - we don't have an appointment available until next month. (even though I had an appt. scheduled for the following week - I'm guessing I would have shown up and they would have said - OOPS sorry he no longer works here but we'd be happy to reschedule)

I hung up the phone and started to cry. I did call that practice back and leave a  few messages and they never called me back. (I still have to call them to get my records actually... add it to my list of things to do that I will forget about in 5 minutes)

 Now I was in a jam. I had almost no meds left and no doctor to see and my symptoms were acting up. So I started the miserable task of searching through my network to find an endocrinologist that might know something about thyroid disease that would see me immediately. I couldn't just go to any doctor because if they didn't know about thyroid disease they couldn't help me.

I asked around and got 2 suggested doctors. I made an appointment at one for a week later and had high hopes that soon I'd feel ok again. Off I went to this new - and highly recommended doctor.

Long story short (sorry I talk a lot) I ended up sitting in my car, crying like a high school girl whose boyfriend just broke up with her before the prom. I had forgotten my Medical ID card(thank you thyroid brain fog) and when I explained that to the receptionist she told me they wouldn't see me unless I had my insurance card. I offered to call them and have them fax something and she said they weren't allowed to do that. The doctor then came out and very rudely told me that she had never had a patient ask her to call the insurance company before(her exact words were something to the effect of, "that's ridiculous")  and that she would not see me because doctors offices don't do that.

I walked out and sat in my car and cried hysterically for 5 minutes.(boogers, tears, no tissues - it was not pretty)

I had 2 pills left - no doctor - and my symptoms were in overdrive because of all the stress.

Doctor number 3 might be the one that takes the cake for me. Also recommended. I knew from the moment I walked into the office and waited an hour after my scheduled appointment to be seen that this wasn't going to work out - but at that point -I needed them to take my blood so they could extend my prescription. Let's go bullet points with this one. Everyone loves bullet points right?
  • She jacked up my arm when she took my blood and then said something to the effect of my veins were problematic (my veins are huge - she was clearly an idiot who loves to torture people with needles as you could land a plane on mine)
  • She asked me about my symptoms and then clearly stared off into space totally ignoring everything I was saying and she kept asking the same basic questions all over again almost like talking to someone with alzheimers
  • She consulted my latest thyroid ultrasound and asked me if I had had a biopsy - I told her I had not because my last doctor said it was normal 
  • she then told me I should have a biopsy because my nodule was probably cancer
  • she then said, "but it's no big deal because people don't normally die from thyroid cancer"
  • we continued talking about the nodule and then she flipped the page in her records and said - nevermind the nodule is too small, you're fine
  • then she told me I should take half my prescribed dosage of medicine
  • on the way out - I tried to confirm that I should take half of a pill every day and she said, "no, you  take a half a pill every few days and the rest of the days you take the full one" (clearly I am an idiot for not being able to follow her directions)
I left that office knowing I would never be back and praying that the damn prescription would just go through  so that I could find a new doctor.

The prescription didn't go through. I had to call back 3 times until some nurse finally called it in the right way. And my arm was all bruised. I hate that doctor.

Then I started doing MORE research and found a doctor sort of close by that is known to treat symptoms and NOT lab results which is important for my particular situation. After getting an appointment  -  I sat there feeling hopeful and waited, and waited and waited. Once I saw the doctor he was great. Super attentive, listened to me and seemed super helpful. But I'm finding there's always a catch in these situations.

Doctor number 4 is great - except he's impossible to get a hold of. His office staff is rude, condescending and non-responsive. (there are countless reviews online that specifically reference how horrific his office staff is)

I mean - I have literally left messages for 2 weeks now that my symptoms are back and that I need to maybe switch meds and FINALLY got a nurse on the phone - talked to her and she was going to call me right back and it's been 5 days. AND I left another VM since that conversation.

Insert sad, dejected grumpy face.

Why is it so damn hard to find a doctor that
A) REALLY specializes in thyroid disease (not just what lab numbers point to what diseases but all the associated symptoms and best ways to treat them)
B)  Is easily accesible
C)  Is in my network
D) if they don't specialize - who will care enough to sit and talk to you and not be clearly hoping you will stop talking because he has 5 more patients waiting to see him and he has no time for you

I have had doctors tell me the symptoms are in my head. I had hives for 3 weeks straight and went to 2 doctors during that time and neither of them connected them to my thyroid/autoimmune system but they were happy to put me on Benadryl AND Prednisone and tell me they'd go away at some point.

So my search continues. I will continue to be poked and prodded and have my blood taken and analyzed all while taking this medicine that is supposed to be fixing me and crossing my fingers that my symptoms kind of go away on their own.

I am stuck in a vicious cycle at the moment which is that I know eating Gluten is making me feel worse - but I think I have to have gluten in my system when my blood work is taken so that we can see what it's really doing to me- so I'm scared to stop eating gluten again because then we can't do the blood work but I also want to stop eating gluten so I can stop being so damn tired all the time.  My understanding on Gluten is that it really needs to be in your system in order to test it with blood work - so it's not like I can eat gluten free until I see a doctor and then eat a slice of pizza on the way into my next appointment. So - I'm trying to make sure I enjoy this experiment as best I can = by eating as much of the glutenny goodness/ carby favorites as I can before I possibly get the notification that in fact, I need to give it up for the rest of my life - because with thyroid and gluten you have to give it up 100% - you can't cheat - ever or it can set you back weeks/months.

At least that's what the research says - because so far I haven't found a doctor who can tell me too much about it - so maybe I'll find a doctor who will say - it's not Gluten - the problem is you need to eat a cheeseburger every single day and get massages and pedicures weekly and you should NEVER NEVER NEVER do laundry again that will fix you right up.

(one can dream right?)

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