My celiac doctor fired me- which canceled my enteroscopy - advice ? It’s so upsetting

[Samantha Jones]

Hi- I’ve seen my celiac doctor since 2017. We had a wonderful relationship. In May 2019- my iron dropped by 50% and my ferritin tripled - inflammation. My celiac antibodies are still trending down. I couldn’t get the doctor to see me. Finally he did. When he did he started ordering a lot of tests. Turned out I had a GI bleed. Anyway - we also did a capsule study. And then onto a enteroscopy with flow cytometry. He sent me a letter stating I asked too many questions and was questing his wording. I didn’t understand. So I am firered from the whole GI department at Johns Hopkins. And my enteroscopy was sceduled in August for 11/4 and they told me today bc I called to confirm something that the test is canceled and I’m fired. Advice ? Obviously I have to find a new doctor. But the enteroscopy is looking for cancer. Ugh. I am so upset. 

[cyclinglady]

I am sorry that this happened to you.  I have had some of my doctors discharge patients when did not comply with their medical advice.  I have not heard that asking too many questions could cause a discharge.  

https://www.verywellhealth.com/can-my-doctor-fire-or-dismiss-me-as-a-patient-2615017

I hope you find another doctor soon.  

[Samantha Jones]

Yes- it says t in the letter. That I questioned his wording. I didn’t understand some of the words l- so I asked. What is most distressing is the enteroscopy is a very important test and for him to have another GI doctor at Hopkins  cancel the test is wrong. I could Have taken those results and moved on. But now it will take months to start over etc. and to have that test done an even longer time. So I guess you just have to say nothing. 

[cyclinglady]

I am so sorry.  Can your PCP doctor help assist you?  

[Samantha Jones]

I don’t think so. They know each other because they both work for Hopkins. But it’s done. The stress from all this mess and trying to heal. I just don’t believe he would do this. It’s because of the lab values he missed and I had to keep asking to see him. He acted very weird on a conference call saying “is anyone in the room with you ?” So weird. 

[Misfit Reindeer]

That's a huge red flag, Victoria. Don't blame yourself, just focus on addressing the problem. What are the first steps you need to take? It seems like you should find a new doctor.

I wish you the best of luck.

[Awol cast iron stomach]

Suggestion: can you contact your insurance company and find a new list of potential doctors? I wish you luck this sounds very stressful. 

As other mentioned a Dr this adverse to treating you for whatever reason is probably doing you both a favor. It is hard to see that some times when going through it.

Bare with me on the long story:

One of my ob/gyn I swear during my pregnancy began to treat me terribly verbally rude etc. I told people I felt she didn't like me or didn't want to deliver my baby. you can't really change Dr easily after a certain point in pregnancy. I considered it , but was too far along for another practice to take me on. She scheduled a vacation during my delivery date coincidence? Her staff told me the day I set up my last appointment I would be seeing/meeting the other Dr As my Dr would be out of town the week of my delivery. I was surprised and said if I knew earlier I would have liked to have met the other Dr before was it an impromptu trip? No response.

I felt like a hot potato being passed to her partner. As I was contracting before my due date and dilating . My Dr said it's false labor go home the nurse's face showed concerned based on my observation.

It was only after, during the pregnancy with my second child, with a new set of  Dr's many blanks were filled in. These Dr's read my medical reports, monitored me , when I began to contract and  dilate early, they checked the fetus' lungs, planning my NICU delivery, I met our NICU team  before so that he was delivered safely, and care was taken to avoid another uterine inversion! A uterine inversion!!!!????!!!!

My first labor delivery had gone badly compared to my sisters' stories. I found out why only during my second pregnancy and pending delivery. I had a uterine inversion, they didn't tell me, and I also in my pregnancy with my daughter had a horrible rash which the nurse called my irritated Dr about I was told "to stop being such a baby, it was just a PUPPP rash. " I realize how later this is the rash I know to be DH. 

So some lessons I learned :

1. if a Dr doesn't want to treat you any longer once you get past the shock and awe try to realize there maybe a reason ( divine intervention, their uncomfortable/unknowledgeable, scared etc)

2. Sometimes life sends the right Dr when you least realize it and the wrong Dr was busy

3. Nurses are golden, be kind to them, on more than one occasion over the years a nurse advocated for me (carefully , respectfully, as they are talented clinicians themselves to a Dr if I didn't have the knowledge of my !medical file or the ability myself)

My daughters delivery went bad and it was another missed misdiagnosis of my gluten intolerance/celiac, however she was alive, so was I, and I retained my uterus to have my son likely because my Dr's partner delivered me that day not my Dr.

Interesting end point:

years after I had my son, I googled my daughter's ob and found she had since been sued for malpractice. I again thanked God for our good fortune, hugged my daughter, and thanked the universe her partner delivered me that day. My celiac was still at this time undiagnosed.

Good luck finding a new Dr he or she maybe the one you don't think you want, but you need.

Best wishes

 

 

Edited November 29, 2019 by Awol cast iron stomach
Added and fixed errors

[Whitepaw]

Sounds like abandonment, which is not legal or ethical. Since it was in writing, I assume their lawyer was involved to minimize risk of lawsuits.  Maybe call and ask why they wouldn't at least let you have this test, and a referral elsewhere, given the risk of untreated cancer and the wait to get in to see someone to start over.  Or have an attorney draft a letter to ask them this. 

[NNowak]

I’m terribly sorry this happened to you. Unfortunately, I feel most of us can relate. In my opinion, the larger a healthcare system grows, the less healthcare is given. These docs and nurses are expected to see a certain number of patients daily, thus time is limited with patients and charting is done while in the room during that limited time frame. Actual patient care is hard to find. So those of us in crises are shooed along through the system. I have my own story, too.  I’ve been in crisis for 3 years with symptoms going back to my last pregnancy in 2006. Finding a different primary care and gastro has been extremely helpful and the docs are finally running tests. It takes a long time regardless of the circumstances, but you have to make sure you have the right professionals on your team and that you understand what is happening. Asking questions is not a reason to be discharged. I feel the doc had other issues at hand and was trying to reduce liabilities. Perhaps going outside of Johns Hopkins will find you a provider that can take the time you need for an accurate diagnosis. Count your blessings. 

[kanucme2019]

So sorry this happened to you but it may be a blessing in disguise.  Sounds like he has some ego complex and wouldn't have been a very good doctor anyway.  And canceling the test sounds a little suspicious too. Probably he had something to do with it. I wouldn't want to have any test done there if that happened to me and I would have fired him if he treated me that way.  I have always ask my doctors a lot of questions especially if I don't understand something or I need to know the risk or alternatives.  Never have they been rude or say I ask too many questions.  This is your life not theirs and you have the right to know and understand what is going on and why this tests are being done.  If a doctor doesn't want to discuss anything for any reason, then it's time to find one who will.  They are out there.  Good Luck.