Is ALP the same thing as ALK i.e. Serum Alkaline Phosphatase.? Also, my Serum Gamma GT is 156 and apparently the norm is 0-40. Does that seem very high please?
Also my Serum ferritin is 213 with a norm of 13 - 150. My AMA was 1 over 640.
I wish I understood what all this means,
I’m very new to this PBC lark. 🥴🥴🥴🥴🥴
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This taken from Health Research explains it better than I could so have just copied it here.
The ALK blood test, which is more commonly known as the ALP or the alkaline phosphatase blood test, is ordered by medical professionals to help detect bone disorders or liver disease.
GGT indicates liver disease and yours is elevated but it is the rest of the blood results that give the doctors an idea of what is going on.
The serum ferritin indicates the level of iron and yours is elevated as can be seen in inflammatory diseases such as ours
Your AMA is a good indicator to suggest PBC.
I am here assuming that you have had your diagnosis and a hepatologist/gastroenterologist is treating your condition.
If you can make a chart and write in these numbers as you start treatment and have further blood tests you will be able to see a reduction providing you respond to ursodeoxycholic acid. It is the big picture overall and best not to get to hung up on base line blood tests.
If I may suggest that you eat a healthy diet rich in vegetables avoiding salt and sugar, some also benefit from reducing wheat products. Avoid sugary drinks such as cola have lots of water to keep hydrated (this helps kidneys as well as liver) avoid processed meats such as ham as they have many preservatives. There is some research to show that up to 4 cups of coffee are good for the liver.
I cannot see from your profile which country you are in but I hope you have a good team around you. For most of us we lead a normal life the same for the rest of the community however some do not respond to URSO and fortunately there is now a second line treatment called Ocaliva.
Please also see pinned post on the right of this page PBC and Life Expectancy as I found this a good article to take away some of the worries.
Keep coming back to us, let us know how you get on.
I was diagnosed in 2006 but believe I had it for a good 10 years prior.
Many thanks for your detailed reply. I live in the south coast of the UK. Yes diagnosed by a gastroenterologist after blood tests for breast cancer. I think I’ve had it for years because every time I had a blood test I was told that my enzymes were raised and I was asked ‘ do you drink’. It’s ironic because I’m tee total because I also have Ménière’s, a balance disorder. Im having an endoscopy next week and I fibroscan in October. Am now on Urso and have made a list of all my. Blood results. Xxx
Thank you. I have joined the PBC Foundation but I don’t find it easy to use. I find this healthunlocked part very useful. I’ve got a fibroscan in Oct and don’t see my consultant until November. My GP isn’t very helpful. X
Where about do you live in the south. I live in Bexhill-on-Sea. My GP keeps saying,” your liver function is alright”, but how can it be if I’ve been with PBC? Xx
I'm over in Hampshire. I think there is a PBC Foundation group that meets in Brighton. If you check the Bear Facts magazine or contact the PBC Foundation directly then you can find your local co-ordinator. My last decent GP appointment (a trainee GP) told me my bloods were the best they had been and indeed on looking at them they are all good but I still have PBC. Make sure you always get your blood results so that you can see how you fare over the big picture. I have learned that it is your right to have a copy.
Are you still experiencing pain in the liver area or has the URSO started to make headway for you? When do you have your next blood tests?
You have had quite a lot going on of recent, it may be a good idea to get your vitamin B12/folate and vitamin D levels checked, magnesium and vitamins A & E & K can also be effected by PBC. Your GP may not do that for you so you may need to enquire if there is a private route locally to you. I know you can get your vitamin D checked easily with BetterYou.com. Some Nutritional Therapists can offer this service. You may be able to find a local private practitioner from the Institute for Optimum Nutrition.
Thanks, very helpful. I’m on calcium and vit D for osteoporosis. I do get liver pain occasionally, more blood tests in September which will be six months since last lot. The consultant did send me a copy of all the results. Xxxx
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