I am due to go back to see my Hepatologist this week and have been trying to write a list of all the questions I would like to ask her (as I know my mind will go blank as soon as I walk through her door!).
So far, I have come up with these:
1. Blood test results (comparison from ones taken in Nov 2018 to Sept 2019)
2. Fibroscan results (from scan done in March 2019)
3. DEXA scan result (from Osteo scan done in March 2019)
4. How often will these tests be repeated?
5. Strange pain (like a stitch) in my right hand side ribcage ... is that related to liver/PBC
6. Ask whether it's possible to have a prescription for URSO for more than one month's worth.
7. Ask whether different brands of URSO can cause side-effects (stomach cramps etc)
Are there any other general questions that I should be asking? Any suggestions would be much appreciated.
Thanks
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Yellow_fish
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On the urso, not sure why you are being prescribed for only one month. Doctors can write you a 3 month supply at a time & allow at least 1 refill on the 3 month supply.
Though if you are newly diagnosed, they might just give you one month to see how it goes.
I would ask for copies of all the tests you did if you don't already have them. It is a good practice to have copies for yourself. You are entitled to them. My hepatologist gives me copies & tells me you should have a copy.
that is a really good list, as ninjagirlwebb says ask for copies of your blood test results although it may be that you need to ask your surgery for them. As to the URSO I get mine prescribed for 2 months at a time, but I think this is something your surgery can adjust rather than it being a specialist responsibility but keep it on your list. You know how it goes in the NHS! On the PBC Foundation web site I think there is a video of a patient interview with Prof. Jones you may like to watch it before your appointment and see if it throws up anymore questions relevant to you also the Foundation's compendium has the EASL guidelines in easy read format which may also give you some different ideas.
Reading @ninjagirlwebb's answer to you it shows up the differences between medical services in the USA and UK.
If you would like to share after your appointment please do update us.
I’am in the UK, I get three months supply at a time now but it was originally only a month at a time. I wonder if this has anything todo with prescription costs as I don’t pay now. It’s worth keeping the question for your consult though. Hope all goes well.
Hi Candy12 - I have asked my surgery if I can have more than one month at a time but they flatly refused! So I thought if I asked my hepatologist, she might be able to do perhaps a 3 month one and then repeat prescriptions might follow suit. It seems a bit silly that I have to request my medication every month ... one more thing to remember (or forget)!!!
That's one way to see and feel it Ninja! Thank you for empathising. After regular exposure to the system for a while now I take it as a reflection of the speaker and be grateful for the hedzup on their small capacity. If I took everything to heart that I'd heard since I had PBC I'd die of despair. "You're too old to even be on the transplant list". And "we can't run around for the likes of you" from the pharmacy assistant who decided I was an alcoholic. (I didn't correct her because it just adds to the idea that such a person doesn't have the same value as another). Sometimes I change provider. Sometimes if I have the energy and concentration to address the behaviour assertively, I do so. But I have learned for sure not to take it personally.
Sorry to take so long to update this post! I had every intention of doing it straight away as much as a way to keep a bit of a diary for myself, as well as to update those of you who might be interested!
So, I had a good appointment with the consultant. My blood results indicate that I am responding to URSO - which is a good thing.
I asked for a print out of my blood test results - which was duly obliged, so I now have my January and September numbers to compare.
I will share them here, as I am still trying to understand the different elements of the results and what they show. The consultant was very good and pointed out the ones that appear to be the key ones - but it's a lot to take in in the 10 mins that I was sat there and so I don't altogether understand exactly what they mean - so if anyone is able to offer some additional information, I would be all ears!
So here goes:
ALP: Jan 2019 = 310/Sept 2019 = 117
GGT: Jan 2019 = 410/Sept 2019 = 81
Fibroscan: March 2019 = 6.3
DEXAscan: March 2019 = no numbers given but told it showed I have thinning bones.
I have been advised to take multi-vitamins A D E & K (over the counter) and the consultant has said that they are going to write to my GP to request Calcium on prescription.
All in all, it looks quite positive (I think!). I have come a long way in how I feel about things since my diagnosis in Feb this year. The way I received my diagnosis sent me into a complete spin (I received a copy of a letter sent by my consultant to my GP which just said I was PBC positive - with no other information on the letter ... which is to be expected as it was just a copy of correspondence between my consultant and my GP. But of course I then Googled it ... and wow I guess you can perhaps imagine how I felt when I saw some of the results!)
I have found some really useful information on this forum and have been lurking for a while, but I think I am now happy to contribute a bit more and also find out a bit more about what the future might hold for me (having had my head in the sand since Feb!).
Thanks for all the support you have given me so far!
ALP: Jan 2019 = 310/Sept 2019 = 117 (This is a good response to urso & depending on the reference of the lab is probably normal or close to it.) Happy for you!
GGT: Jan 2019 = 410/Sept 2019 = 81 This is also an indication that your liver no longer shows signs of injury. Doctors usually don’t test ggt again post diagnosis. The item key for diagnosis, but not for monitoring post diagnosis.
Fibroscan: March 2019 = 6.3
Results are measured using kiloPascal’s (or kPa) and range from 2 to 75. The normal range for a FibroScan is between
2 to 7 kPa. The average normal result is 5.3 kPa.
Your liver doctor/NP will explain these results to find out how much scarring you have. Your result will vary based on what liver disease you have.
Scarring has 4 stages:
• F0 means no scarring
• F1 is mild fibrosis
• F2 is moderate fibrosis
• F3 is severe fibrosis
• F4 is cirrhosis or advanced fibrosis
DEXAscan: March 2019 = no numbers given but told it showed I have thinning bones. If you have a copy of the report, it will give you details of how you compare to the average person. Thinning bones is medically referred to as osteopenia. Yes, increasing calcium will help. Also make sure your vitamin D levels are adequate as D helps calcium absorption.
I think you can be at ease with your results. Hope this helps.
Hi ninjagirlwebb thanks for your reply! I am sure my hepatologist mentioned some of those things but it all flew past so quick I didn't get a chance to write it all down. Your explanations are clear and very useful!
Are you in the UK @ninjagirlwebb?
I had planned to ask my Hepatologist how many PBC patients she has - as from what I can gather on this site, it is a fairly rare thing?
She hasn't been able to tell me what might have triggered it (I had rhumatic fever when I was 5 - wondered if this might have anything to do with it).
You’re welcome! I know how things are so blurred at appointments because it is kind of nerve whacking. Think that you will calm down after the first few appointments & then can start to process & note all the info the doctor gives you. It just takes time.
I am in the US. My hepatologist told me I should see him every 3 or 4 months. I prefer to see him every 3 months & just check in with him.
Unfortunately, there is not a lot of research on what exactly triggers pbc so we don’t know & our doctors are not able to tell us. Yes, it is a rare condition that most general doctors are not aware of its existence.
Good news is: 1) that we have a definite diagnosis, 2) that it is discovered early in its progression, 3) that we respond to urso, 4) we have accessible/affordable healthcare. These are our blessings.
Given your results, you should go out, have fun & celebrate!!!
@ninjagirlwebb - thanks, yes that's a great idea ... although I turned 50 a couple of weeks ago and have been treated to quite a few celebrations already ... albeit without any alcohol involved!
Take care and I'm sure we will meet each other again on another post somewhere!
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