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Not being able to see an actual gastro doc at Mayo
I wrote before but I had an appointment with one of my other docs at mayo yesterday. Extremely concerned about my condition and asking why I am not yet on a feeding tube for nutrition. Told me to call and ask to get an appointment with an actual doc there and not just the NP. I been told this twice. They say there is nothing they can do, it is up to the gastro dept. My hepatologist even wrote them herself. had zero luck. So again, at their suggestion, I called and explained and again was told it is not possible to get an appointment with one of the doctors and I have to keep seeing the NP, who seems a bit over her head and is not listening to my other actual docs there. In the meantime I am eating less than 300 cals a day for months. Looks like I have to leave Mayo and find someone else. I was in hopes they all worked together as a team and one doc would get with the others and collaborate on how to treat my condition. This has not been the case. Not one of the docs I see even knows what the other is saying or doing. Is this normal? I am so disappointed.
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I didn't have great luck at Mayo Rochester so I had my gallbladder and colon surgeries at the U of M / Fairview in Minneapolis. I highly recommend them.
I’m glad you were helped, but I am shocked at Mayo’s failure to help,you.
They told me they can send a note, and they do, but it is up to the Gastro and they have no say. 🙁 It is ok, I am in waiting for a response from the OPX. If it doe snot help, I will go to the university.
What was your experience that made you move on? Care to share?
I go to Mayo jacksonville. My gastro there is not hearing me and my primary care doc needs Mayo to input. I am having new flare ups and labs show insulin levels and pancreas are elevated but my doc at Mayo has me only seeing his nurse. I am getting no answers to my issue nor is she explaining to me or looking into it.
I went through patient experience once over stuff like this and all that happened was the doctor was at one video appointment after and he said she is as good as him and all I need is to see her.
Thing is she drops the ball and does not get it.
I do NOT want to be scolded by those two again. is it possible to see a new gastro if mine is dropping the ball and my situation is complex? Or will I have to answer to them as to why I did it and be stuck uncomfortable with them?
High insulin levels is not something that should continue to go on unchecked and she just says nothing but yep, that would be your pancreas and is not doing a thing about it. Not even discussing it with me or sending it to a different person. I am frustrated and do not want to go back to them but they are the only docs that understand what I have. It is complex and I am scared! Thanks everyone. Any advice would be appreciated!
Hi, @gastrogirl. I can relate to your issue.I have 20% function in my only remaining kidney, am diabetic, and have gastroparesis. I wasn't exactly impressed with my local GI "help."
A GP diet conflicts with a renal diet and conflicts with a diabetic diet and a renal diet also conflicts with a diabetic diet so I have to do a balancing act with meals and have to make some compromises.
Fortunately, my PCP is very well versed in treating Type II diabetes and has a good understanding of GP. He said it's common for someone with GP to have fluctuating blood sugars and has helped me design a tummy-friendly diet with a workable insulin regimen.
However, I am a bit surprised that your insulin levels are high instead of your blood glucose readings being high. In my case, my GP diet tends to elevate my blood sugar one day and drop it the next. Most likely this is related to absorption times as slow food movement delays nutrients getting into the bloodstream even though insulin is still being produced and rapid gastric emptying can dump a lot of glucose into the blood in a shorter time. Perhaps your PCP can help you with your situation even without input from your gastro peeps?
Are you diabetic and do you take insulin? If your PCP can't help, would you consider seeing an endocrinologist?
Hope you find some answers soon.
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2 Reactions@gastrogirl, regarding a referral to a new gastroenterologist, that is something that you can request through the Office of Patient Experience.
I agree with @kamama94 that it might help to see an endocrinologist. Might you ask Mayo for a referral to an endocrinologist?
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3 ReactionsI am not diabetic. My A1C is good. My blood glucose is good. I have autoimmune gastritis and my stomach lining is all eroded and abnormal cells. So they are unsure why the issue I am having is occuring because when not in a flare up my CT and MRI look good as well as my labs. But I have flare ups where the pancreas acts up. Thanks for your input. I appreciate it.
I did office of patient experience asking once and I wanted to see a doctor and not a nurse practioner because she seems a bit stumped by me. It put me in an unfortable situation where during my next appointment the doctor was there but I was told there was no need to see him because she works for him and she is good enough. I was embarrassed and it was awkward.
The thing is that she always tells me one thing and then suddenly, if the doctor gave input, everything she said changes and she goes back on it. I want to go right to the source because many times the doc is not involved except during seeing scans and whatnot.
I asked to see an Endo today and she told me no. She can not make a referral because all my e=test I had done at mayo looked good. But what about the ones my ER and primary just showed you? Seems I get nowhere with her. I would contact them at patient experience again but I have anxiety about it since it may not work and then things with her would be more awkward than ever. But I have fatty liver, autoimmune atrophic gastristis, gastroparesis and POTS so I think seeing the doc and not the nurse would be what I need.
Thanks every so much for the input and advice. It means a LOT to me.
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1 ReactionI go to Jacksonville campus. I was self referred. Been over two years now and I multiple gastro issues including one super rare one.
I have only seen the NP and never the doctor. I went to patient experience to ask abpout seeing an actual doc or possibly changing teams so I see a different NP. Mine drops the ball a LOt and seems overwhelmed by me. I am too sick to hand hold. There is no communication with my other docs.
Patient experience scolded me and told me I am self refered so I am lucky to even be at Mayo. Self referred can never see a doc and never change to a new NP! You get ONE and if you are not happy with your care then go elsewhere and leave! I was in tears!
So my question is, does anyone else see a doc who self referred? has anyone ever changed teams and how?
I need advice. I am just not a good fit with my NP. They said gastro docs only do procedures. But everyone I know who goes to mayo sees a doctor? Maybe because they were doctor referred? Any HELP on this please??? I do not want to leave Mayo but I do not know what else to do since I got scolded.