Follow up questions possible Gilbert’s - British Liver Trust

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Follow up questions possible Gilbert’s

Peejlady profile image
9 Replies

Hello everyone. I am hoping to come up with some questions to ask my dr when I get back into the office for my appointment. I tend to not ask the right questions and let them rush me out the door.

I had some blood work come back abnormal back in November. I was trying to figure out what my dry mouth was all about. Elevated bilirubin, fractionated, with direct in normal ranges and indirect elevated. Other LFT’s were within normal range. The dr ordered further blood tests which I think were ggt and a smear. Both those came back with normal findings. I have used alcohol over the last 10 years, and used more heavily in the last 2-3 years. My anxiety over the blood work has been through the roof causing more symptoms. I’ve had a trembling feeling, dry mouth, stomach cramps (not really any right side pain at all), my eyes are a little jaundiced. My dr hinted towards Gilbert’s and sent me home to come retest in 3 months.

I ended up going to the hospital for the shaking and they did more blood work and a Ct. no findings other than the elevated indirect bilirubin and small amount of fluid in my abdomen.

If you were me what questions should I go in prepared with. I’m wondering if an ultrasound would be good to help alleviate some of my anxiety. Also I’m curious to see if birth control could be causing a rise in my bilirubin I am on mirena iud.

Any gentle advice is greatly appreciated. I’m not looking for mean comments about my anxiety. Thank you!

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Peejlady
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9 Replies
MINTVCX profile image
MINTVCX

I think ultrasound is a good idea. You can confirm Gilbert's Syndrome with genetic test which your dr suspects based on your LFT. Good luck. GS is really not a big deal.

viapath.co.uk/our-tests/gil...

Fibro2021 profile image
Fibro2021

Аs I understand, a small amount of fluid in the abdomen was found on a CT scan? I wonder how your doctors explain it?

Peejlady profile image
Peejlady in reply to Fibro2021

That will be a good follow up question. I wondered if it was anything normal for women to experience that? The dr at the hospital didn’t say anything about it, but when I pulled up the report online it was noted on the Ct scan paperwork

chrisw740 profile image
chrisw740 in reply to Peejlady

A small amount of abdominal fluid in women, particularly during certain parts of the menstrual cycle is not necessarily a cause for concern.... but yes, definitely one thing to follow up on.

Ubwa profile image
Ubwa

Gilberts is usually benign, although mine seems to have made my liver more sensitive to damage from Alcohol. I was diagnosed I had it when I was 12 and it never bothers me until I started to drink heavily seemingly. But to echo others, best ask the professionals

Alibaba80 profile image
Alibaba80

I have been on birth control for many years and this has I think caused my liver problems. I have symptoms ( and had fluid under my liver) and very unwell. I pushed for a biopsy and have Nodular Regenerative Hyperplasia....my bilirubin is always elevated and other LFTs relatively normal...

Alibaba80 profile image
Alibaba80

I do not think abdominal fluid is normal in anyone's body...

chrisw740 profile image
chrisw740 in reply to Alibaba80

We all have tiny amounts of free fluid in our abdomen - it decreases the friction of the peritoneum covering all our abdominal and pelvic organs and helps to protect them.

This free fluid maybe especially observed in small volumes (during scans) in female patients around the time of menstruation.

In liver disease, portal hypertension and low albumin can mess with the process of keeping the amount of fluid just right and so ascites develops.

I'm only qualifying this so the original poster doesn't worry unduly.

Fibro2021 profile image
Fibro2021 in reply to chrisw740

Perhaps the doctors should consider extracting the mirena and then monitoring the bilirubin levels? Although the amount of the hormone is undoubtedly very small, it's possible that this is quite enough to compete with indirect bilirubin conjugation in a particular case. Sometimes a decrease in vitamin B12 levels can also lead to an increase in indirect bilirubin.

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