Hepatologist Appts

[gwillistexas]

Good Morning. I’m just curious how many of you see your hep once a year? I’m still stage 2 fibrosis ( by fibroscan & biopsy), but I’m not really okay with once a year. Your thoughts?

[Ktltel]

Morning,I see my hep via telehealth (zoom) once a year. But I have Labs every 6 months, and an MRE, and ultrasound once a year. I use my patient portal to keep in touch with the hep nurses about anything pertinent. If I start having more symptoms, or I feel like something's up, I can schedule another telehealth appt. or, an in person appt. if I need too. I just sort of play it by ear. If I was very PBC symptomatic, I'd probably schedule myself twice a year for sure. In December of 2021, my MRE showed that I was in the high-end of stage 1. I missed last year's (2022) MRE. We changed insurance. This year I'll have it again in the Fall. We will see how much I've progressed. My labs last month were good. Only elevation was my Alk-phos (160). How about you? How are your numbers looking?

Stella❤️

[gwillistexas in reply to Ktltel]

Thank you Stella. I guess once a year is normal when we’re not having issues. I just like to feel more connected. Although I can get in touch with either he or his NP with questions or issues. I have been seeing him once a year, with a visit with his NP at 6 months. I was scheduled to see him February 24th but he was on his way home from a liver meeting so it was a phone call only. Lasted maybe 10 minutes. It was uneventful in my opinion. Then I saw he has me scheduled to see his PA in August with a repeat lab because my Alk phos was up to 160. So I won’t see him till next February. I’m actually getting a second opinion on things next Wednesday with a hepatologist who will do his own fibroscan that morning.

[Ktltel in reply to gwillistexas]

I was told my 160 Alk-phos wasn't bad. They said that can happen from Inflammation in our bodies as well. The major PBC numbers to watch is our Bilirubin and Albumin. Keep track of those as well. Please keep me posted. Let us know how you are doing.

Stella❤️

[gwillistexas in reply to Ktltel]

Yes, bilirubin and albumin are perfect. I’ll let you know. 😊

[Ktltel in reply to gwillistexas]

Excellent!!😊❤️

[butterflyEi]

I'm in the UK. Pre-Covid I was seeing the specialist each year which I found for me was enough, since 2020 I have had telephone consultation. In between I have asked my GP to run blood tests just to make sure I am staying on track. However there was a time when I had no consultations or tests for about 5 years. I like it better when I have annual consultations with the specialist. Hope you are keeping well.

[LorraineLouise]

hello.

Yes seeing the Hepatologist once a year seems to be the norm. We usually get labs, ultrasound and or MRI scans every six months. I was diagnosed with PBC back in 2016.

This is the schedule that I have been on ever since.

wishing you the best in your journey

lorrainelouise

[gwillistexas in reply to LorraineLouise]

Thank you. I have labs often. My internist does labs every 4 months, rheumatologist every 6 months and hep once a year unless something is off. So my labs are watched closely. Maybe I’m not sure what I expect from my hepatologist. My rheumatologist was surprised that I’m only seen once a year by my hep. My internist is who diagnosed me in 2017, so he changed my labs from once a year to every 4 months. I guess all considered I’m in good hands. 😊

[LorraineLouise in reply to gwillistexas]

yes sounds like it. I to see my rheumatologist every six months. Sometimes I feel like my only social life is medical appointments.🤦‍♀️

Yet we are still here! And I have more good days and bad. So I am very grateful.

Just curious. Do you have rheumatoid arthritis as well? If so, do you take azathioprine for it? My rheumatologist put me on Asia thigh. Praying to help with my joint pain. And since being on it. My liver enzymes have gone into the normal range. Which they haven’t been there, in 10 years.

just wondering,

lorrainelouise

[gwillistexas in reply to LorraineLouise]

No arthritis so far. I have limited schleroderma, reynauds and he keeps close watch for others. Yes, I’m grateful as well for not having any issues. I feel great. 😊

[LorraineLouise in reply to gwillistexas]

I’m so glad you are feeling great. That’s all we want. Is to not suffer in our lives.

Best regards to you.

lorrainelouise

[gwillistexas in reply to LorraineLouise]

Thank you. I wish you well 😊

[gwillistexas in reply to LorraineLouise]

I also see a hematologist because of a high IgM. He watches my blood protein as well. So far so good. I understand what you mean about our social life. Never dreamed drs would run my life. But we’re thankful for them. 😊

[LorraineLouise in reply to gwillistexas]

exactly!!!

[Readlots in reply to LorraineLouise]

Hi Lorraine, I havePBC and autoimmune hepatitis. I’m on Azathioprine for the AIH, so I’m not surprised that it’s helping your LFTs.

[LorraineLouise in reply to Readlots]

yes bonus for me. Helps my rheumatoid arthritis, and Liver as well.

Thank you! For your reply.

lorrainelouise

[VeeWat in reply to LorraineLouise]

mri with contrast?

[CKH73]

I tend to visit the hepatologist only when my numbers are out of wack or if I feel I need to have additional tests done. My PCP does my blood tests and medication refills. I have had PBC for over 20 years…

[HealthyChik]

Hi,

My labs are good, so I only see my hepatologist’s PA at my yearly appointment. I feel like that would change if I develop any problems and I’d likely go back to being scheduled with him. I know there are way sicker people, and I think they prioritize frequency of appointments that way. My primary can keep tabs on my labs and I’d definitely go back if something changes. I’ve had PBC for several years and I’m stable, so I’m not sure what I’d gain by going multiple times. However, when first diagnosed, I asked for an appointment every 6 months and he was agreeable. Finally told me I was the healthiest person he had seen all day and to go live my life. I took his advice and don’t stress over it too much anymore. I know he’s only a phone call away. But do what makes you comfortable. We are all at different places and it’s so important to have a doctor that you feel comfortable with and have confidence in. Best of luck😊💕

[gwillistexas in reply to HealthyChik]

Thank you 😊.

[Yankeerose3]

Good evening, I see my hepatologist every 6 months..I always get blood work and an ultrasound few days before going. I use to alternate and get an MRI as well. When I had the ultrasound in March, a cyst was found on my pancreas so GI Dr drained it and now I'll have to have it tested yealy. Also, treating me for EPI. I question if the weekly injection for diabetes didn't cause the issues with the pancreas

[gwillistexas in reply to Yankeerose3]

Hi there! I’m sorry about the cyst. Hopefully you won’t have any more problems like that. I have an uncle with diabetes but have no personal knowledge of it except my sons dad was diabetic. I’ve learned a lot about it through the years. I’m actually grateful that I’m well enough I don’t need to be seen but once a year. I see my other drs at least 6 months so I should not be so hard on my hep, lol!

[Yankeerose3 in reply to gwillistexas]

True. If blood work is in the normal ranch then they tend not to worry so much but keep a yearly check on it but bw sure to see your doctor or go to the ER if you start having complications

[gwillistexas in reply to Yankeerose3]

my internist runs full labs every 4 months, including CMP, vit d and b 12. So he catches anything that is out of normal range. 😊

[Yankeerose3 in reply to gwillistexas]

You got a good dr there. That's great he stays on top of it and he'll catch it if things change so no need to go more often than once a year until there is.

[gwillistexas in reply to Yankeerose3]

yes ma’am, you’re right. 😊

[Stub007]

I am usually in touch with my gastroenterologist once a year. This year I referred a suggestion to him from my endocrinologist: You might get an upper right quadrant ultrasound.

The gastroenterologist’s response was whether I wanted to do that, I am also stage 2 and 84 years old and my last test showed no cirrhosis, just some scarring. I told him that it was up to him. He ordered the scan and it showed nothing new. For most of the four years since my diagnosis, I thought, based upon what his PA told me, that my condition is stage 3; it’s not—-it’s a TWO.

Before the results were in, I told him that I wanted to know two things: at what stage am I and upon what does he base his response. When he told me, I felt that I had a new lease on life.

I can only speak for myself. For my age, I am active and rather healthy, and I’m not worried about my PBC.

All the best,

Don

[gwillistexas in reply to Stub007]

Hello and thank you. I am 68 and overall I feel very well. I tell people i feel 30 in my heart and mind, lol! I only had one ultrasound and that was at diagnosis, and I’ve been surprised I’ve had no more. My yearly fibroscans have stayed steady with stage 2 fibrosis and that’s been for 6 years. I’m scheduled for one Wednesday so we will see. My hepatologist has only been concerned one time and that was my elevated ast so I had a biopsy. And it also showed stage 2 so I suppose I have no complaints. Where are you from if I may ask.

[VeeWat in reply to gwillistexas]

how elevated was the ast?

[gwillistexas in reply to VeeWat]

I’ve been looking for my lab results but not finding it. It was 3 years ago. I’m thinking it was in the 40’s.

[Stub007 in reply to gwillistexas]

I am in southeastern NC: Wilmington.

[gwillistexas in reply to Stub007]

I’m in Texas.

[Stub007 in reply to gwillistexas]

Texas is a huge state, but I have a high school classmate who lives in Cleburne.

[gwillistexas in reply to Stub007]

I think that’s about 140 miles East. I’m in Tyler.

[Twojer]

hi Gail

I had been seeing a hepatologist at Mayo Clinic in Florida once a year. When covid hit it changed to in person once every two years along with a fibroscan and bloodwork with a telehealth every other year. I had to change hepatologists this year due to an insurance problem. I see my gp every three months or so and she runs CMP-14 and I forward them to my hepatologist. It took 4 years but my liver enzymes are now in a normal range.

I noticed you said you see a hematologist because of elevated IgM. I recently was tested when I wanted to get a penicillin challenge done to see if I had outgrown my allergy. I had elevated IgM but low IgG. The allergist who ran the test said I could get infusions but it sometimes causes blood clots. She said she couldn’t order the infusion. I would need to get my hepatologist to do it but when I sent the results to him he said it was out of his area. I don’t know if I should get someone else to look at it or not.

Linda

[gwillistexas in reply to Twojer]

hello. I just read your post. I am at work so I will reply this evening 😊

[Twojer]

👍🏻

[gwillistexas in reply to Twojer]

TGIF!💃. I never knew they could do an infusion to see if you’re still allergic. I was allergic in my younger days and I refuse to take it or any drug in the penicillin family. I have several drug allergies. As far as the IgM, my IgA & IgG were normal. My rheumatologist sent me to the hematologist because my IgM was really high. Hematologist watches it because it can be an indicator for multiple myeloma but so far he’s not been alarmed. He also watches my protein and my light chains. It gets pretty deep. I see him once a year.

[Twojer]

Thanks for the info.

there are not that many antibiotics I can take. I usually end up having to take a mega broad spectrum. I am also allergic to sulfa drugs and cephalosporins. I have an identical twin sister and she’s not allergic to penicillin. I asked my gp if I could do a penicillin challenge. She sent me to an allergist. She said sometimes people outgrow their penicillin allergies. The penicillin challenge was not the infusion part it had to do with the low IgG.

I went in and they pricked my skin with a needle with something on it. Then I had to sit and wait for 30 minutes or so. There was no reaction so she said I was not allergic. I have not as yet tried taking penicillin but will make sure I have Benadryl handy just in case.

[gwillistexas in reply to Twojer]

same here for sulfa. Keflex, codein. I usually take doxycycline with no issues. Broad spectrum. My drs say im difficult, lol!