Linear endocrine cells hyperplasia

Posted by eileenb1022 @eileenb1022, Aug 19 11:19am

Hello,
I don't know if this is the appropriate forum but it does have something to do with my question and I also couldn't find a gastro board. On June 2, 2022 I had a endoscope with biopsies for ongoing stomach problems. The fact that I was refused anesthesia is another subject but I had it done and a week later I got biopsy results on my portal no phone call. It said linear endocrine cells hyperplasia with the possibility of autoimmune gastritis. Dr said it required follow up but no need for concern. Since my follow up was over 2 months away I tried to call him they wouldn't let me talk to him. Several weeks later I tried to speak to the dr who was the head of the motility dept. He wouldn't call me back. Some gi manager called me question me why I was calling this dr. This morning I got off the phone with the complaint dept he was full of excuses too. I do have a appointment with a new gi but it's not until November 10. I'm worried that between June and November the hyperplasia can develop into a endocrine tumor or do you think I am safe until November? This person I spoke to this morning was totally unsympathetic. I learned online by other people who had this told me I was suppose to have these antibody bloodwork which this hospital never ever mentioned to me. This person this morning said I can't believe anything from anyone on the internet. I said what was I suppose to do when now dr would talk to me and I had no idea what these biopsies results meant. I just want to know if I'm safe until November. Thank you

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) group.

Hello @eileenb1022,

I can certainly understand your concerns. Your experience of having an endoscopy without anesthesia was uncomfortable indeed. I also had an endoscopy, without anesthesia, when my driver left the facility and was planning to return after the procedure to pick me up. My only course was to go through it without anesthesia or to reschedule, so I gathered up all of my courage and had it done. Did your medical team explain why they could not give you anesthesia?

The fact that you cannot get an explanation of your biopsy results seems difficult as well. Just being told that follow-up is required, but no need to be concerned leaves you with questions. Does your doctor have a PA or a clinical RN that can give you more information while you wait for your follow-up appointment?

I'm also wondering if you could share what symptoms led to this endoscopy.

REPLY

Hi and thanks for your response. I have 3 people including the doctor say how there is some shortage of anesthesia it's crazy this is the biggest hospital in the state. No all I wanted is some explanation of the results and I could not get it. I did speak to a nurse she just repeated what the report said so no help there. I also tried to talk to the dr who is the head of the motility dept he wouldn't call me back either. Some gi manager called me back and basically I think she was just trying to cover their behind. All she said as far as the anesthesia is some shortage and ir had to be reserved for the inpatients. Crazy all I wanted was a explanation. I was on some Facebook groups they told me I should have had some antibody bloodwork to confirm the autoimmune gastritis never even mentioned to me but what I was told on Facebook was hyperplasia could turn into cancer but no always but I have been told nothing from a medical professional. They wanted me to wait over 2 months for a follow up so I have a 2nd opinion appointment with new gi but couldn't get in until November 10. Not ideal I know but is biopsies ever wrong especially what this hospital put me through? I'm currently dealing with another issue my sinus dr referred me to rheumatology cause he suspects sjorgens syndrome I have all the symptoms but can't get in until February so sinus dr ran some similar tests for it and they all have been negative as far as my stomach issues it started with constipation and occasional burning and inability to eat I lived in the er. No pcp would help me I'm still dealing with that but basically took 6 months to find out it was my gallbladder then after removal still sick. So I ended up with this gi biggest issue was nausea and couldn't and still can't eat much. I'm so sick and scared. My husband doesn't know how to help me. Last dr waste of time fatigued, low b12, iron and ferritin dropping and last dr said I was fine. Going to new pcp on the 30th 3 hrs away in Boston as I feel I'm running out of options. How were your endoscope results?

REPLY

Hello @eileenb1022,

I'm glad that you posted additional information and I'm also glad that you have an appointment with another medical system. I believe that a second opinion will be a good move for you. In my experience, a new hospital system usually requests the biopsy slides and runs its own biopsy on the material. That way they can be sure that the results given to you are accurate.

You asked about my biopsy. I had several endoscopies prior to being diagnosed with NETs/carcinoid lesions in the duodenal bulb. I have had three separate surgeries for each NET. It is good to do the required follow-up as recommended. Even if you have to drive several hours to a good medical facility this will help you put your mind at ease. It is important to work with a medical team that you can feel comfortable with.

Have you lost a lot of weight with the nausea symptoms you have had?

REPLY

Hi Theresa,
I'm so glad you wrote back. Your right. I'm kinda hoping new gi will repeat biopsy as this other place that dropped the ball on me I don't have much confidence in. I am a little nervous. I don't even know much about this hyperplasia and possibly autoimmune gastritis. I'm kinda nervous though. One of my sons I had been estranged from, I talked to him this morning I told him what was going on he said he looked it up he thought hyperplasia could be genetic as my mo. Died from brain cancer. I just got more anxious. Can hyperplasia progress within the next few months,? I'm afraid of dying. I'm not even 55 and have a autistic son who is very close to me. But my appointment is Nov 10 at mass general in Boston which is a really good hospital but I'm afraid the appointment is so far away. I can be seen Sept 2 but I don't feel as confident there. I'd rather wait for mass general. Do you think I'll be safe to wait till then? Is it possible other place could be wrong I mean is biopsies ever wrong? Another thing last night I felt burning in my upper stomach first time in a long time. This morning I ate a muffin and my stomach kinda hurt afterwards as far as my weight which in recent yrs I struggled with. When I first got sick 14 months ago I was 272 this morning I was 246. I'm glad I have you to talk to.

REPLY
@eileenb1022

Hi Theresa,
I'm so glad you wrote back. Your right. I'm kinda hoping new gi will repeat biopsy as this other place that dropped the ball on me I don't have much confidence in. I am a little nervous. I don't even know much about this hyperplasia and possibly autoimmune gastritis. I'm kinda nervous though. One of my sons I had been estranged from, I talked to him this morning I told him what was going on he said he looked it up he thought hyperplasia could be genetic as my mo. Died from brain cancer. I just got more anxious. Can hyperplasia progress within the next few months,? I'm afraid of dying. I'm not even 55 and have a autistic son who is very close to me. But my appointment is Nov 10 at mass general in Boston which is a really good hospital but I'm afraid the appointment is so far away. I can be seen Sept 2 but I don't feel as confident there. I'd rather wait for mass general. Do you think I'll be safe to wait till then? Is it possible other place could be wrong I mean is biopsies ever wrong? Another thing last night I felt burning in my upper stomach first time in a long time. This morning I ate a muffin and my stomach kinda hurt afterwards as far as my weight which in recent yrs I struggled with. When I first got sick 14 months ago I was 272 this morning I was 246. I'm glad I have you to talk to.

Jump to this post

@eileenb1022

It appears that you have lost confidence in the current medical team, and in order to feel more at ease, it would be good to get another opinion. In order for you to have peace of mind, it might be helpful to be seen at Mass General in Boston. You can certainly keep the Sept. 2 appointment if you want more feedback from them.

Since you don't know for sure, what is causing your problems, I urge you not to take leaps into dying and thinking about your mom's unfortunate bout with brain cancer. I realize that it is not easy to put aside worrying if that comes naturally to you, however, worrying really does more harm than good.

As you wait for the upcoming appointment, what can you do to relax? Do you like to walk, see movies, read books, etc.? It really is important to keep yourself as free from stress and worry as possible.

Will you share with me something that you can do to help deal with worry and stress?

REPLY
@hopeful33250

@eileenb1022

It appears that you have lost confidence in the current medical team, and in order to feel more at ease, it would be good to get another opinion. In order for you to have peace of mind, it might be helpful to be seen at Mass General in Boston. You can certainly keep the Sept. 2 appointment if you want more feedback from them.

Since you don't know for sure, what is causing your problems, I urge you not to take leaps into dying and thinking about your mom's unfortunate bout with brain cancer. I realize that it is not easy to put aside worrying if that comes naturally to you, however, worrying really does more harm than good.

As you wait for the upcoming appointment, what can you do to relax? Do you like to walk, see movies, read books, etc.? It really is important to keep yourself as free from stress and worry as possible.

Will you share with me something that you can do to help deal with worry and stress?

Jump to this post

Hi,
yes i have lost confidence in my former medical team for a dozen of reasons. i am really looking forward to going to mass general. its just hard to wait and stay calm i was actually doing ok until i got my son worried. i never connected my moms condition to what i'm dealing with. it was my son's fear i know its two seperate issues. i guess i should be glad based on what i know its not cancerous at this point.and hopefully by november i know i will be in good hands. i was debating sept 2 but i think i will wait. i have more confidence in mass general. but yes i have had anxiety and health anxiety since my mom died. but i know i gotta think on the positives.
I will say things that relaxme are this may seem funny but certain shows, like the golden girls, i always watch them in the morning and at night in bed. they make me forget about myself, also impractical jokers, love them, im actually am going to see joe gatto live and a meet and greet next month. also when my husband takes me out or he always tries to take my mind off things. he said i'm going to be fine.
I just sent new GI office a message just to see if there are any cancellations, i know probobly not but doesnt hurt to keep checking in. i also asked if he had my biopsy slides. just want to know what he has in case i need to print out anything. thank you! see new pcp in boston next week too!

REPLY
@eileenb1022

Hi,
yes i have lost confidence in my former medical team for a dozen of reasons. i am really looking forward to going to mass general. its just hard to wait and stay calm i was actually doing ok until i got my son worried. i never connected my moms condition to what i'm dealing with. it was my son's fear i know its two seperate issues. i guess i should be glad based on what i know its not cancerous at this point.and hopefully by november i know i will be in good hands. i was debating sept 2 but i think i will wait. i have more confidence in mass general. but yes i have had anxiety and health anxiety since my mom died. but i know i gotta think on the positives.
I will say things that relaxme are this may seem funny but certain shows, like the golden girls, i always watch them in the morning and at night in bed. they make me forget about myself, also impractical jokers, love them, im actually am going to see joe gatto live and a meet and greet next month. also when my husband takes me out or he always tries to take my mind off things. he said i'm going to be fine.
I just sent new GI office a message just to see if there are any cancellations, i know probobly not but doesnt hurt to keep checking in. i also asked if he had my biopsy slides. just want to know what he has in case i need to print out anything. thank you! see new pcp in boston next week too!

Jump to this post

Great idea, @eileenb1022! I'm glad that you are being proactive in this matter. It sounds as if you are on the right road.

I agree that shows like the Golden Girls are relaxing. I have several sit-coms that work for me as well.

Take care. Will you keep in touch with other questions and concerns?

REPLY
@hopeful33250

Great idea, @eileenb1022! I'm glad that you are being proactive in this matter. It sounds as if you are on the right road.

I agree that shows like the Golden Girls are relaxing. I have several sit-coms that work for me as well.

Take care. Will you keep in touch with other questions and concerns?

Jump to this post

Hi yes i will. i appreciate you taking the time to write to me. im trying to set up to get b12 injections. the admin of my b12 defiency group on facebook told me some others too that injections can reverse hyperplasia. not sure how true that is. but my b12, iron and ferritan has been dropping. last 2 dr's have ignored it and said its fine. thats why im bringing all kinds of info to new pcp next week. she's in boston and i hope she will listen and pay attention. i was just looking at the pathology report from my endoscope is there anyway i could copy and paste it to you just to get your feedback. it might make me feel better as i know you have been through worse than me. thanks Eileen

REPLY
@eileenb1022

Hi yes i will. i appreciate you taking the time to write to me. im trying to set up to get b12 injections. the admin of my b12 defiency group on facebook told me some others too that injections can reverse hyperplasia. not sure how true that is. but my b12, iron and ferritan has been dropping. last 2 dr's have ignored it and said its fine. thats why im bringing all kinds of info to new pcp next week. she's in boston and i hope she will listen and pay attention. i was just looking at the pathology report from my endoscope is there anyway i could copy and paste it to you just to get your feedback. it might make me feel better as i know you have been through worse than me. thanks Eileen

Jump to this post

@eileenb1022

As I'm not a medical professional, I would not be very helpful in understanding your pathology report. It's best to leave that to the doctors. As you meet with the specialist, however, bring the report and a list of all of your questions. It helps to be well-prepared and doctors are more than happy to address concerns.

Continue to post and let me know of your concerns.

REPLY
@hopeful33250

@eileenb1022

As I'm not a medical professional, I would not be very helpful in understanding your pathology report. It's best to leave that to the doctors. As you meet with the specialist, however, bring the report and a list of all of your questions. It helps to be well-prepared and doctors are more than happy to address concerns.

Continue to post and let me know of your concerns.

Jump to this post

OK thank you. I did send a message this morning to new gastro dr. Just wanted to ask about possible cancelations again and what they got for reports so I will know what to bring. If anything. I'm trying to relax more and just trying to take care of myself best I can.

REPLY
@eileenb1022

OK thank you. I did send a message this morning to new gastro dr. Just wanted to ask about possible cancelations again and what they got for reports so I will know what to bring. If anything. I'm trying to relax more and just trying to take care of myself best I can.

Jump to this post

Sounds good, @eileenb1022 . Do your best to relax and be well prepared for your appointment.

REPLY
@hopeful33250

Sounds good, @eileenb1022 . Do your best to relax and be well prepared for your appointment.

Jump to this post

thanks. i will. thanks for your help…

REPLY
Please sign in or register to post a reply.
  Request Appointment