I Am More Than the Data

By Mary Lynn

1 min read

I had the unfortunate experience of seeing a different nurse practitioner today. I have hypothyroidism, which I am learning is common with psoriatic arthritis (PsA). I had the wonky thyroid first so I am used to its shenanigans.

I simply wanted my thyroid levels checked. I feel "off," so checking my thyroid function is always a good place to start. My family doctor wouldn't order a lab unless I was seen, so I went in.

Good grief, it was awful. My vitamin D supplement was increased by my rheumatologist in June. My vitamin D level is low normally, so I am taking more vitamin D now. I am on Prolia for osteoporosis. These things I felt were worth mentioning. Maybe one of those things has thrown off my thyroid.

This practitioner kept repeating, "I have read the data," as a means to discount any concerns that I had.

I wanted to tell her, "I am more than data, you silly woman. I know my body far better than you do." You have spent 5 minutes with me.

Instead, I bit my tongue and got my prize. Lab orders. I will never consent to be seen by her again.

Overall, I have had excellent health care providers. This was a reminder that not all of them are competent or even good listeners. I send out my support to anyone who has had to deal with clueless people in a white coat!

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Leanne Donaldson Moderator & Contributor
AAARRRGGGHHHH!!!! <inline-mention username="Mary Lynn" user-id="4513411"/>, I totally feel your frustration! And to think, in my experience, I usually expect a nurse practitioner to be a "better" listener than a doctor. I am so sorry you had that experience. 🙁 And I totally "get" what you mean about simply wanting to check your thyroid levels. I, too, have had a wonky thyroid for years before my PsA and it is always a pain in the rear end to try and rule its shenanigans out of the pain equation. And especially with the thyroid, we are always MORE THAN THE DATA 😀 What is low for one person is totally normal for someone else. I HEAR YA! Sometimes, when I've had an experience like that with someone, I write a review or have been contacted by the office to offer a "review" of my experiences. Maybe it is worth the time and effort to do so. If for nothing else than to possibly spare someone else a similar experience. I really hope you are able to get your current "off" feeling sorted out soon! Gentle hugs, and take care of yourself 😀 -Leanne (Team Member)
Mary Lynn Member
 Leanne, great advice to leave a review if it can benefit someone else. My husband says that I don't speak up for myself as much as I should when it comes to medical stuff. I fear becoming the patient they dread seeing so I tend to smile a lot and worry later. There is a healthy and polite way to advocate for ones self. Um...but I might need a class 😀
CommunityMember232 Member
The worst one I have with this is my rheumatologist. Numbers are good, yeah!! I find my patience is getting very short with this. I lost my mother, and have been in a flare since. I see her next week. I hurt like crazy, my hands have been stiff and hurting all day. I'm going to have my blood work done tomorrow, and I swear if everything is normal I'm going to lose it. And then we will talk about losing weight, yet again. I admit, my diet is pretty bad. I've been comfort eating a lot. 
1. Mary Lynn Member
 <inline-mention username="CommunityMember232" user-id="3305611"/> , I am fortunate that my rheumatologist does not rate my disease based on my labs. "Labs," he says "don't tell the whole story." At each visit he examines my hands, feet and ankles, elbows, etc. He is monitoring them for swelling and to see if his touch is painful to them. I am sorry for your loss. My Mother died 8 months ago and grieving along with PsA is a tall order. I wish you all the best at your next appointment. That you will be heard! 
2. CommunityMember232 Member
 <inline-mention username="Mary Lynn" user-id="4513411"/> Thank you, and I'm sorry for the loss of your mother too. My rheumatologist does a full exam. Externally, I don't have many symptoms. I also have fibromyalgia, so she also does trigger point exam. She did talk about adding Embrel, I on mtx only right now. But, she doesn't address the pain. I do see pain management, I have for several years. She didn't seem very happy about it, but that doesn't matter. He is a good Dr, overall I've been happy with him. I just feel stagnant with my rheumy.
Maia Member
 I am so relieved to find this current thread. I am newly diagnosed with psoriatic arthritis (less than 1 yr). However, I suspect I’ve actually had the disease for many years and simply went undiagnosed. I am now seeing my 3rd rheumatologist who has, I feel, finally provided me with an accurate diagnosis. But…I am unbelievably frustrated with her and could use some advice. I truly feel that my rheumatologist and NP are both very knowledgeable. However…it seems that once things (like med changes, lab orders etc) leave their hands and are turned over to their office/ admin team, they consistently drop the ball. They have a “policy” of sending scripts to a pharmacy other than my own simply to get insurance approval. I don’t understand this since I know for a fact that my pharmacy is very adept at working with my insurance. Once their “preferred pharmacy “ gets approval from my insurance…they then proceed to forward it to my pharmacy. Does this make sense to anyone? Is anyone else seeing red flags here or is it just me? It definitely delays me receiving my meds. And this most recent time when I needed to switch to a different biologic, things got completely confused. I’ve been waiting for over 3 weeks for “their” pharmacy to work things out with “my” pharmacy. They simply will not submit directly to my pharmacy - I’ve asked. Another issue - if I have my labs done at their office, it runs smoothly. But if I go to an outside lab, the script somehow gets lost and I always have to call them and remind them to email it to me. The last time I called, I was told that they had already sent it and I just needed to check my Junk file. Duh! Of course I’d already checked and … surprise surprise - it wasn’t there. My dr is very active in research. Mainly Phase IV studies. I’m starting to feel like a data point rather than a real living, breathing, person. So my dilemma- stay with a good doc who has a ridiculous support team, or take my chances with yet another rheumatologist? 
1. Lori.Foster Community Admin
 That's a really tough one, <inline-mention username="Maia" user-id="4600747"/>. Have you considered talking with your doctor about the issue? It's possible your doctor doesn't even know what is going on since the office staff handles most of that. I would be tempted to go elsewhere if things didn't improve, but I know it's hard to give up such a good doctor. I hope others chime in here. Best of all wishes. - Lori (Team Member) 
2. Mary Lynn Member
 <inline-mention username="Maia" user-id="4600747"/> , I can relate! I positively adore my rheumatologist. But his support staff drives me nuts. I find myself wondering, "How can they struggle this much with basic tasks?" I had a large hiccup with FMLA paperwork. My doctor did his part quickly, very quickly. Then his staff managed to lose it or misfile it. In this case no harm was done but it shook my confidence in his office. But because he is so caring and so knowledgeable, I will stay with him.

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