Dreaded Itch! Does a high Billirubin count ... - PBC Foundation

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Dreaded Itch! Does a high Billirubin count cause this due to bile being leaked into the bloodstream? If not what causes the itch to start?

Jtxx profile image
Jtxx
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Jtxx
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13 Replies

Hello Jtxx.

Well I originally started with the itch (the fatigue and tiredness probably commonly overlooked tho' part of PBC), that was what prompted me to go to the GP.

I've so far had a within normal range bilirubin count on every blood test so it can't be this.

The theory as I've read is perhaps due to bile salts in the bloodstream enroute back to the liver after the digestion process as the liver apparently breaks down 'old' bile also.

Figures in a way as I'm perfectly fine during the day, almost always have since I orig started itching 2010 that coming to the end of the day we've had food at intervals thoughout the day.

I know some nights I don't itch and this is what I can't figure out. I can't help wondering if there is something that I eat (or drink) during the day that somehow 'dilutes' or slightly alters it's pH if that is the right terminology to use.

Jtxx profile image
Jtxx

I remember reading somewhere that someone did not eat for one day and the itch did not happen so the bile in the blood seems a logical reason (at least to to you and me). Thanks for that info. X

SamT profile image
SamT in reply toJtxx

Hee hee Jtxx. Funnily enough one day I literally did not have time to eat until the evening. I felt bloomin' marvelous all day but lousy after I had eaten. Think I might mention starvation to my specialist today as a potential cure... lol!

in reply toSamT

That's what I said to my husband SamT when he was worried I hadn't eaten all one day. That it might be the cure for PBC!!! Not eating for one day isn't going to do much harm at all, certain cultures do it for religious reasons and I think it can give the body a bit of a rest at times, a day fast.

in reply toJtxx

Don't know if you are referring to me Jtxx (have mentioned on this site) but since I started with the itch in 2010 and since diagnose that yr., I think I've had 3 occasions where after so many wks I've felt so tired I've not got up of a Sunday and only had water in the day, no food nor urso. I found I didn't experience the itch that evening and for a few days later but what is the puzzle is that the following day I had no itch I had been eating as normal! Work that one out, bizarre this PBC...!!??

I had new pot's, caulie and a little pork chop with a light gravy last night and then a ruddy good scratching session before I went to sleep ( at 4am) if thats any help.

Maybe we should start compiling lists of what we eat to see if there are any similarities

XXX Linda

in reply to

Hello again Linda, I think an overload of fat can cause more itching. My theory (tho' can't vouch for it or I'd have the answer for us all as how to cope best with PBC), is that if the gallbladder releases bile when we eat anything containing fat then maybe the more bile we release the more has to be carried back in the bloodstream to the liver, hence the itch for a lot of us.

I was ok last night actually, not too bad, no disruptive sleep and I had sim to you for tea last night - steamed carrots & cabbage (greater quantity on plate), no MSG instant noodles and a very tiny piece of belly pork of which the fat I cut out (I'm not much of a meat eater, my husband likes tho'. We do eat a lot more chicken and fish in the wk tho').

I used to think that days I ate an orange/clementine that caused more itch but I've discovered that days I don't I can be the same so back to the maze.....

Hi Peridot, well I have only has porridge today up to now and my ankles are starting to party :o)

donnathompson profile image
donnathompson

Hi all i always thought i suffered from prickly heat is this like the itch you all talk about or is that something different..xx

Jtxx profile image
Jtxx in reply todonnathompson

I used to suffer from prickly heat years ago but only when I was sunbathing. Think it has something to do with the suntan lotions being too thick and stopping your pores from breathing therefore causing a rash. Don't anymore. Thought prickly heat was only linked to sun exposure? x

donnathompson profile image
donnathompson

Thanks jtxx for the reply i will check with the specialist next week, I have really sensitive skin so was just assuming it was prickly heat.xx

in reply todonnathompson

Hello donna.

No definitely not prickly heat when you have the itch.

I have since about mth 8 (on mth16 now) of the urso my itching changed with an improvement. I started having evenings without any itch (that was when it was prevalent and was informed it was called 'cyclical itch' due to the timescale have it), then it gradually increased to more than 2 nights minus itch to graduate to 5. In the last 10 days I had 5 itch free evenings, then 2 that weren't too bad at all and now just gone another 3 with virtually zero itch but last night, the slight itch felt a bit different, not as persistent as normal so cant' help wondering now if mine is going to diminish even further.

Skin is definitely more sensitve with PBC I have found and for me certain clothing materials have changed over the last 2yrs too.OK wearing a bra for me all through the day yet come the evening I can find myself taking it off as it starts to irritate.

donnathompson profile image
donnathompson

Hi thanks for the reply be glad when ive been to the hospital,then will hopefully be able to get on with life.xx

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