I've been referred to a hepatologist due to having elevated ALP, GGt on and off since 2018 and a recent positive AMA test (although my GP has said this isn't the usual one for PBC, I'm assuming this means not M2?) but have been told the wait is a year so I've booked to see a private consultant who specialises in autoimmune liver disease. I'm 35 so I've been a little concerned about this and whether it is PBC or not hence why I've booked private.
I was wondering if anyone could give me some guidance on what to expect when I see the consultant, what tests he will be likely to order and if there are any good questions for me to ask him before I see him on Monday?
Thanks 😊
Kirsty
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kirstm85
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Hello, I didn't get seen privately, but I can tell you about my first meeting with NHS consultant. I was sent into another room for a fibroscan before I saw him (like an ultrasound that drums against your side), but I don't think that's standard, and height and weight measurements. In the appointment he told me he was diagnosing me with PBC now, but I'd had it a long time. He explained what it was and how it causes damage. Then he talked about the blood tests and scan my GP had done, and what they meant. He took a thorough history, not just liver stuff, but anything important with my health and medicines I've taken, and took details of my husband and kids' names and ages. He asked about any and all symptoms and their severity. Then he told me about the medicines I need to take and why. I was asked if I had questions. I asked about diet and taking painkillers. We finished up with him telling me what tests I needed doing next. Later I wish I'd asked how frequently I'd be monitored and how best to contact them. Mine was quite advanced at diagnosis, so the further tests I had was more in depth blood tests, an endoscopy and a bone density scan.
I hope the appointment goes well. Write your questions down and take it with you. If you can, take someone along for support and to help you remember things later. Check whether you are allowed first though. Let us know how you get on.
Thank you very much for your reply. It sounds like your doctor was very thorough. I hope mine is just as thorough as yours was! I'll make sure I post on here to let you know how the appointment goes x
I am in the US. My primary care doctor sent my history to the hepatologist and also spoke to him about me before my appointment. He recommended the hepatologist to me as they taught at the same medical school and were affiliated in the same hospital system at the time.
So I suggest you gather your labs and let him/her take a look. I would highlight the abnormal items so that they are aware.
My hepatologist ordered a whole slew of liver specific labs. He went over every test with me and what it was and how we will work to figure out my condition. Drew me a diagram of how he would go about the diagnosis. Very scientific. Made me a copy of it and said we will check off each of these items. I asked questions as he explained to me. Think my appointment was 45 minutes. Told me he had all the time in the world and to relax and discuss my concerns. I was his last appointment of the day at 3 pm.
When the labs came back, he wanted a liver biopsy so that I can get definitively diagnosed. They will know what special tests to do depending on your situation and prior labs.
After diagnosis, these are the things he orders to monitor me:
fibroscan, sonongram, vitamin D levels, bone density tests along with labs: comprehensive metabolic panel which includes the liver labs, cbc and platelet count, thyroid labs, and cholesterol/lipid labs.
Do you leave your doctor’s office knowing not much more than when you went in? Do you want to know more about your liver disease and what’s going on inside your body?
Below is a helpful list of questions other PBCers have suggested asking your doctor at the next appointment. You have the right to know what is going on inside your body, so don’t be afraid to ask. Your doctor is there to help YOU!
Patient questions to ask your doctor:
1. What are my:
Blood tests results
Biopsy result
Disease stage
Other medical test results
1b. Please explain the results in layperson’s terms.
2. Will we continue the same schedule of:
Medications
Treatments
Lab tests
2b. Will changes be made
3. At the present time, would you recommend
any changes in my:
Diet
Lifestyle
Job-related activity
Recreational activities
4. Would you be willing to refer me for:
Second opinion
Further medical testing
Dietary guidance
Physical therapy
Any other outside assistance
5. Will you send copies of my medical
records to my other doctors?
6. Will you give me copies of my labs and
medical tests?
7. How many patients with PBC do you
treat?
8. What are your thoughts on alternative medical therapies?
9. What symptoms or associated diseases might I expect from my liver disease as it progresses?
10. Will you support me when the time is appropriate to file for medical disability?
11. Is your office staff prepared to assist me when the time is appropriate to be listed for transplant?
12. Are you willing to refer me for participation in research studies for PBC or associated diseases?
13. May I leave some materials with you to distribute to your PBC or other autoimmune liver diseases patients? For example: PBCers information, American Liver Foundation, research agendas, fundraising sponsorships, local support groups and contacts.
14. How do you feel about support groups?
14b. Can you recommend a support group for PBC?
Questions the caregiver or support person may want to ask the doctor:
1. As the caregiver or support person, what can I do for the patient?
2. As the caregiver or support person, what type of daily assistance will the patient need from me?
3. How can I help the patient with:
Treatments
Emotions
Physical changes or pain
Financial support
Other
4. What changes might I expect:
Physically
Mentally
5. Would you recommend counseling for the:
Patient
Family
Caregiver
6. Is it necessary to apply for medical disability at this time?
great list of questions... this support group thru The PBC Foundation is where we are right now. I hope you find help, support, and encouragement from so many others who understand what's like to have this misunderstood disease. Use reputable sources --dont' google. Many great articles from the Mayo and Cleveland Clinics, American Liver Foundation, Canadian PBC Society, and of course right here from The PBC Foundation.
Also have a look at the web site, lots of useful information on there, the web address is at the end of the document. Good luck at your appointment let us all know how you get on.
Hiya,I would probably expect them to order more bloods and potentially an ultrasound and fibroscan. If there is still uncertainty after all that then potential liver biopsy I would imagine. They should provide information about the disease, lifestyle, symptoms and symptom management. Do you have any physical symptoms?
If you are diagnosed then please do become a member of the PBC Foundation, they are a great support to us PBC patients and families.
I was diagnosed with it at 33 so relatively younger than most.
Thank you for you reply. What has life been like since your diagnosis?
I've had two ultrasound scans, one in 2018 and one in December last year and both came back as normal. The doctor is getting my scans sent over so they don't have to be repeated (luckily this keeps the cost down!).
I don't really have much in symptoms apart from tiredness and on and off joint pain. When I was pregnant last year I was incredibly itchy though especially my legs and would scratch them till I bled but this was never seen to and this lasted until a few months after my son was born. I never made a connection back then though.
I think I'm just in a head space where I either want PBC completely ruled out or fully diagnosed so I can then start treatment early if needed and not have the question hanging over me all the time.
A positive AMA test along with elevated liver enzymes (liver panel) is usually sufficient for a diagnosis of PBC. Labs should be repeated every 3-6 months according to the Standard of Care. Are your liver enzymes elevated? Have you had a AMA drawn? You are right about once a diagnosis is made, then treatment with Urso is so important to start. I hope you can get answers soon. Let us know.
Sorry I can’t help much: My primary care doctor referred me to a gastroenterologist on the basis of two different (types) of tests being “high “; the specialist ordered a liver biopsy, which confirmed PBC.
Well I saw the private specialist on Monday and he seemed pretty certain I have PBC although he said he would do a few blood tests to confirm. He suggested I become a member of the PBC foundation for information. He was incredibly informative, understanding and very much interested and has referred me to himself as an NHS patient which I am so happy about and means I won't be paying a fortune for tests and treatment!
So although not brilliant news, definitely a positive experience and I feel I am in good hands!
Thank you to everyone that replied to my initial post, I appreciate the support 😊
Hello, I hope that you are doing well after your recent diagnosis. May I please ask you how elevated was your ALP and what other tests were ordered in addition to ALP to confirm the PBC? My ALP was 132 in December and it went up to 174 in May of this year. I have been referred to GI but the appointment is not until August 24th. Thank you!
My ALP was originally 150 odd back in 2018 but they couldn't find a cause. This was along with ggt which was near 200. In December just gone both my ALP and ggt were 190 which prompted further tests from my GP. He tested for Antimitocondrial antibodies along with other autoimmune antibodies and the AMA level was 100iu/ml.
I was referred to GI but my GP didn't state on the refferal letter that I tested positive for antimitocondrial antibodies so I was told the wait was over a year. When I saw a private specialist he said he could pretty much say there and then I had PBC. he wants to check my ALP again and do a fibroscan (I assume to check for liver damage) but I'm waiting to hear for these tests. Sorry I don't have much more information on what the next steps are.
I asked my GP about AMA test but he thinks that it is not required maybe due to my ethnicity and alcohol history. My other liver markers are in the range, it is just the ALP...I'm worried but I can't do anything until I see the GI on August 24. Don't be sorry, I appreciate your time and reply! Thank you
I know this sounds like a daft question but has your doctor checked your ggt as this can give doctors an indication on whether its your liver or bones. I think raised ALP alone indicates bone disease and ALP and ggt indicates the origin is liver. I say this but I'm no doctor!! And I'm pretty sure a doctor would have checked this.
They checked the GGT back in December when my ALP was 134...that time my GGT was well within the standard range. I don't think he checked GGT in May when my ALP shot up to 174. The ultrasound following the high ALP showed no gallstones..so now I'm just hoping to sty positive for next 2 months and then see the GI. I do have fatigue, no energy and weight loss...God knows what is. I was so stupid to take my health for granted....
Raised ALP by itself can’t be attributed to bones. There is a more in depth test, alk phos isoenyzme to give a fractionalized % of bone, liver or gastric (stomach). It measures whether the % is abnormal in any of the 3. The hepatologist can order this test if deemed necessary.
I agree that there is at least a sense of relief once a definitive diagnosis is made and proper treatment is started. Getting the right care makes all the difference.
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