Consultant update
Posted , 4 users are following.
Hi everyone I had my consultant appt yesterday to get my results of my MRI on my pancreas. I got my results online 2 days prior which stated "no abnormalities found in the pancreas" but have a 3.5cm duodenum diverticulum which is a pouch attached to the duodenum. Obviously I did some research on the internet to ask questions.
I saw a different consultant a woman who runs the gastro clinic and I said it would of been nice to see my usual consultant since he knows my case and she turned on me! Said I was acting aggressively wen she was the aggressor!
She then started giving me the results from 6mnths ago and got angry wen I pointed it out.
She then told me my results were normal but didn't mention the duodenum diverticulum. wen I asked her about it she told me it wasn't relevant and if I got my results online wat am I doing here. She then said the diverticulum is common and nothing to worry about.
My friend who was with me mentioned my severe anxiety disorder and said she didn't know when it's clearly on my notes because at first she didn't seem interested in answering my questions until we mentioned my anxiety.
My elastase-1 has been low 5 times the 5th time it was zero. Said it was possibly bacterial overgrowth and not EPI as my pancreas was normal.
I did mention the stomach cramps I still get that radiates to my back and she'll discuss whether to give me a MRCP which is wat they should of given me the first place. I phoned the department requesting an MRCP and was told no.
Even though I mite not have EPI she's given me 40000mg 3 times a day and 25000 with snacks 3 times a day. This seems quite high is this normal??
I didn't ask all the questions I wanted to due to her aggressiveness I ended up going home in tears!
0 likes, 6 replies
Shortie79 eagle33050
Posted
I believe you have a right to a second opinion. This consultant seems rude and that's not what you need, you need someone that will listen to you and answer all your questions. As for the dosage, that's not high. I didn't even have EPI but they prescribed me Creon to keep my pancreas working at a normal rate. My dose was 60,000 for meals and 20,000 for snacks. I would journal your symptoms so you can see what may trigger your pain and it might help the doctors get a better picture. It helped me when I was trying to get a diagnosis. I still journal my symptoms to see how far I have improved, if at all.
I really can't believe she asked you why you were there if you got the results online … umm you're not a doctor, nor do you specialize in the hardest organ to diagnose. I think I would have gone off on her! Screw her (I know I'm not being nice) but this is your health and how would she feel if she was in your shoes. Doctors should be empathetic and listen to their patients. So sorry you had to deal with someone that clearly doesn't care.
I hope you're able to see another doctor and get a MRCP. Good luck and keep us updated.
eagle33050 Shortie79
Posted
She kept saying it's her clinic and why would I prefer seeing a junior consultant but she took wat I said the wrong way.
Tbh I would of said something but too scared she weren't going to give me my results if I did.
She didn't even review my notes before I went in and didn't know why I was there!
She questioned why I would want to see the same consultant wen she didn't have a clue about my history. I wasn't there just for my results but to discuss my Elastase and whether to up my dose of Creon as I was only on 10000.
I'm hoping to have an MRCP that you mentioned to me as I still don't feel rite. Waking up early in the morning with cramps that radiates to the back and last few days a lot of blood in my stools. I only just got my blood results back which showed very low vitamin D, lymphocytes, ferritin, low iron which was 9 should be between 10 and 200 I suppose it's not too bad and a few others which were low. I'm not in severe pain but don't feel rite expecially the blood which I've got many times before.
And for her not to mention the small bowel diverticulum in my opinion is wrong it might not be relevant to her but it is to me as it can cause severe complications. it mite be rare but it can and has happened. It probably wouldn't of developed if this was sorted out 2yrs ago. My Elastase was low at 90 but i only noticed this recently once I could see my results online. I was told it was normal and the pain I was Getting was Ibs.
Goes to show to always check your results yourself.
I have another appt scheduled and if she's rude again Im going to complain. I shouldn't be going home in tears.
I'm not an aggressive person so for her to say that was very upsetting. Anyway thanks for the reply and I did check your message to see wat dosage your on so thanks for that and if it wasn't for you I wouldn't be "hopefully" having an MRCP.
Anyways hope all is ok with you and feeling better x
Shortie79 eagle33050
Posted
It doesn't sound like she's an expert in the pancreas. There's many doctors who specialize in GI but not the pancreas. Even my GI thought my symptoms were IBS related after my MRCP revealed I had two ducts. I asked to see a pancreas specialist and that's when I was diagnosed with CP. My GI dismissed pancreas problems because my blood work didn't show anything and I was considered too young. Luckily the pancreas specialist knew a ton more. It's going to take time but she sounds like she's judging you and that's not what doctors are supposed to do. Sorry you're dealing with this but I hope you get answers soon.
eagle33050 Shortie79
Posted
thanks. I'm now worried about my iron levels. just got my other test that revealed my transferrin sats being extremely low and I'm still having a lot of blood in my stools. my anxiety don't help 😦 i know your going through a lot so i appreciate all your help you've given me.
vedawms eagle33050
Posted
I agree with Shortie79. I think you need to look for a pancreatic specialist. y
You also need to get some help for your anxiety.
You mentioned blood in your stools. I don't know if you discussed that with your doctor today, but that would be enough to send me to the ER.
I, too, had problems getting diagnosed. The ER finally diagnosed me after years of chasing my tail. I would suggest going to the ER and see if they will take a look. You might even get your MRCP.
I'm sorry that you had such a lousy visit. We have all been in your shoes.
Take care of you!
susan676 eagle33050
Posted
You can try a patch form of iron and b-complex. There are some brands sold online for bariatric patients. Also see if you can get a lab for retinol binding protein. People with pancreatic diseases are often low in fat soluble vitamins and vitamin A is particularly important to blood.You can take sublingual forms of D to get that working right. When I was diagnosed with PEI I found a paper online that talks about the various nutritional problems involved.
Blood in your stools is not right, you need to find another doctor. If you research, look at the work by David Whitcomb at University of Pittsburgh. One of his papers says that you can have symptoms for 5-10 years before the damage to the pancreas becomes irreversible and obvious on imaging. They are trying to develop diagnostic criteria for this pre-pancreatitis type condition so that it can be treated early but that is still very much in development.