Hi all. When I last visited KCH for a 6 monthly consult the doctor ordered a load of blood tests (naturally). I just tend to wait for the results and see how things are going. Well I didn't get details of the results and ended up going to my GP to see if they'd been advised (seems inordinately difficult to get them out of KCH which I'll speak to them about at my next appointment). When I eventually got the details there was a new one on the list i.e. AFP. As is my norm I immediately went online to see what this was and once I managed to get through all the articles on pregnancy (definitely not relevant for a 57 year old woman!) I saw it was a test for cancer. Panic very close to the surface at this point. Trying to find out what the 'acceptable' range or maximum is was pretty difficult. My result showed a level of 6. From what I could see that's fine - 10 was the point at which I should be concerned. I've since tried to relocate the site where I saw that but to no avail. Can anyone direct me to where I can get some reasonable, non-scary information? Many thanks. Adele
Test for alpha fetoprotein: Hi all. When I... - PBC Foundation
Test for alpha fetoprotein
Hi AdeleMalcolm
I had this blood test done regularly while waiting for diagnosis. I think it can also be an early indicator of changes in different liver diseases (not necessarily cancer) and anything under 10 is normal. I found this link which confirms safe levels. Try not to worry - easier said than done I know, but as they say no news is good news.
urmc.rochester.edu/encyclop...
Hope this helps
Thanks Angel_b. I've an appointment with my GP tomorrow so no doubt he'll advise the same. Stay well. Adele
My consultant also ordered this on my last but one visit. It's like getting blood out of a stone getting them to give results of blood tests. I still don't know what the result was even after my last visit.
I shall be speaking to my gp pronto. I'm getting tired of being treated like i have no brain.
Sorry about the rant. Touched a nerve there. At least I know what the normal range is. When i get the result.
Thankfully you know your result. And that's good.
Hello LindyRich.
If you have registered online for your GP surgery by now every patient in England anyway (not sure about Scotland or Wales) can access their records online (I could from late last year) and the blood test results are on there. I didn't even bother contacting my GP surgery January for mine, was going to wait a week and then check online (but one of the admin staff contacted me). I used to ask for a print out but I can do my own now.
If it is a hospital consultant blood test result, ring his/her secretary (I did after my disgnosis December 2010 to ask about some mention of Vitamin D in his letter to me, to me 'a bit low' didn't mean a thing so his secretary mailed me the results).
Hi Peridot
Thats a good idea. I did register online and set my password up and could see my repeat prescriptions and appointments but not test results. Then it went kaput. I couldn't get into it anymore. And at the time i was feeling pretty crook so i couldnt be bothered with it. Your just reminding me has urged me on to go and sort it out. Watch this space LOL.
Thanks for the reminder.
Hope you are feeling ok 😊
Hello again LindyRich.
Sounds like you need to contact your surgery to request the info again for you to get online. If you forget password on mine, if you have no mobile number on record have to speak to the staff in reception in person to get the info to get back on.
I've popped an NHS link on here regarding the GP records online. I know that from sometime alst year everyone in England anyway had to have access to their medical records if they wanted and they include blood test results. I know I had to sign a form at the surgery for the request of adding my medical records to what I could already use (booking appts., etc).
nhs.uk/NHSEngland/thenhs/re...
Ahh! That last sentence. Thats what i didnt do. I did the rest. Now i know that I'll get it sorted.
Im glad it was mentioned
Thanks again
Hi LindyRich. I just don't understand why it's so difficult to get information out of the hospital. I have no problems with my GP practice and at least you don't end up playing telephone ping pong! I think the NHS is great when it works but levels of investment or lack of will impact on more and more of us. I'd gladly pay more tax to improve it. Good luck with your GP.
Thank you 😊
I have had this test a number of times over the last 8 years , I think it's a fairly common test in anyone with liver issues.
It's all about routine monitoring and being proactive and knowing your normal base line range is a good thing , then any variations can be tracked for any early changes that may or may not occur.
I wish my GP had , had some early tests of liver functions, then it would have been easier to judge how long I may have had PBC for, as it is I was dx 8 years ago but feel it's more likely to be 20.
Thanks Candy12. It is reassuring that it's a routine test for us PBC folk. I've got details of all my blood tests to talk to my doc about this morning incl my rubbish cholesterol. No doubt this is all going to become quite routine for me. Stay well. Adele
Hi AdeleMalcolm, don't be alarmed-- they usually do this test once a year. It doesn't sound nice because it is a 'tumor marker' test. I feel better when it's done because it is an early warning sign, then action can be taken. There are certain cancers that PBC sufferers may be more prone to--think blond blue eyed people more prone to skin cancer, as an example--doesn't mean you are getting cancer. Next time you see the specialist , ask him what tests are being done on an annual basis, every 3 or 6 month basis, etc , so that you can take a more informed role . Sometimes whoever filling out the order for your blood work may forget one of the tests,-- it's happened to me & I've reminded them to add the test. I also get copies of ALL tests to compare to previous results. Have a good day!
Thanks Belliver. I agree it's better to stay informed a d to take control... definitely on my wavelength!
Hi Adele,
I am at KCH, London as well. AFP is part of their routine liver tests. KCH only would contact you in regards to your blood tests if there are any concerns, otherwise they will discuss bloods on your next appointment. They usually send out a visit summary including blood results shortly after your visit 😀.
I have been at KCH now for a few years and I am really satisfied with the treatment there.
Thanks littledragon23. I did get letters after my first couple of visits but nothing the last time. No doubt just an oversight. Early days! Like the docs there too.
Just Diagnosed
Blood test tomorrow
LIVER TRANSPLANT FOR SEVERE ITCHING 
Pain all over
