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Doctors think I have Gilberts Syndrome

Posted , 4 users are following.

mark11385
mark11385

hi all

So a few months back I was seemingly fit & healthy, running, cycling, crossfitting etc.

Went through a hugely stressfuL breakup, house love and then my mum got cancer.

After one 9mile race I had a a pale stool, went on doctor google and thought I had pancreatic cancer.

I Had CT scans of my pancreas, gallbladder and liver done and all came back okay apart from some focal fatty spar on a very small area of my Pancreas.

I was told my liver was okay but that they wanted a MRI & MRCP done to check that area in more detail.

During this my bloods were showing high bilirubin and hovering between 24 & 31 but all other LFTS were okay.

the MRI showed up some gallstones but all my ducts were okay and as they should be. No one ever mentioned to me that they were concerned about my liver.

I have pain in my upper middle and right and towards my back which could potentially be gallstones, my stool are relatively normal now but i was diagnosed with IBS a long time ago, so nothing is ever right there tbh

the consultant flagged Gilberts as a possible cause for the bilirubin being high, they checked the conjugated and unconjugated and it has been suggested to me that I do have Gilberts as a resukt of that test but the pain, fatigue still concern me slightly.

they are also checking me for Coeliac Disease due to my stools not being right.

i worry that I have liver problems, either fatty liver, liver failure or Cirrosis (sp?) but surely one of those three imaging test would show something going on with my liver from a visual perspective? my last blood test the lft's were all good and my bilirubin was 20. slightly above normal range but had come down. my urine is always totally normal unless i forget to drink, but I usually drink alot of water.

i'm trying to get reassurence from my GP but it seems to be hard to get any kind of resolution or comfort from them. I'm petrified I have Liver Cancer or I am going to die.

Everyone says that there are no symptoms with Gilberts disease, so if that is that case I am worried about what else is going on. i feel like i am jaundiced but a bilirubin of 20 wouldnt cause that surely, so is that just me being paranoid.

i'm also not very good at consistent eating and regularly fast or skip meals which ai have heard doesn't help.

thanks for listening guys

0 likes, 5 replies

5 Replies

  • Leeds6
    Leeds6 mark11385

    Edited

    hi. Sorry you have problems- gilberts is dull isnt it?

    Best advice is get a good "looking after your liver book". Diets etc...then find out by trial and error what works for you. eg for me spices esp cinnamon are not good. The stuff people write on here gives you other peoples experiences which help..

    But one of the key triggers is stress. Thats my worst one!!

    good luck

  • corey11443
    corey11443 mark11385

    Posted

    I started having symptoms when i turned 30. The pale stool and dull liver pain scared me to death.. try to stay out of your head because stress makes it worse. the fatigue was really bad, i could barely walk down stairs. im 32 now and only have a problem if i dont get enough sleep or drink to much.

  • corey11443
    corey11443 mark11385

    Posted

    I started having symptoms when i turned 30. The pale stool and dull liver pain scared me to death.. try to stay out of your head because stress makes it worse. the fatigue was really bad, i could barely walk down stairs. im 32 now and only have a problem if i dont get enough sleep or drink to much.

  • corey11443
    corey11443 mark11385

    Posted

    I started having symptoms when i turned 30. The pale stool and dull liver pain scared me to death.. try to stay out of your head because stress makes it worse. the fatigue was really bad, i could barely walk down stairs. im 32 now and only have a problem if i dont get enough sleep or drink to much.

  • JJ95650
    JJ95650 mark11385

    Posted

    For perspective, if my 16 yr old son with Gilberts could run just one mile or participate in activities five days in a row without needing a "bed day" afterwards, we'd be ecstatic.

    Be kind to yourself, take time to grieve, eat and drink with thoughtfulness and be methodical getting all the tests run to rule out what you fear. My mum passed of a rare type of liver cancer in 2018 ... plenty of diagnostics are available to pinpoint that.

    Seek peace ... and keep being diligent 😃

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