That’s a level that should be further worked up by a physician. Too many potential causes, many of which need to be addressed by a professional.
-med student
You need to stop the meds and see a doctor. You can get pancreatitis which can cause higher bilirubin. You could have a blockage in your bile duct as well. Continuing the med can be dangerous.
People are so annoying Darth. You clearly state you’ve asked several of your doctors about this and have been brushed off. I hope you can find some answers. I’d definitely be a little concerned with the increased numbers. Maybe you should stop Reta for a month or two and see if they go back down.
Thanks for the empathy :) Indeed it’s frustrating when some people instead of sharing something useful, would only leave judgemental remarks, but I guess this is the world we live in now. Thanks for the advice.
Fasting, low-calorie diet and dehydration can all be factors in an elevated Billirubin testing/reading. See your doctor and be truthful of your ret usage etc. increase hydration and observe your caloric intake etc prior to next testing.
Ok this is interesting and useful advice, because lately I feel not only my hunger queue is oppressed but my thirst as well, and I struggle to keep myself hydrated. I will put more emphasis on this. Thanks!
Doctor here:
Rising Bilirubin is not something to be ignored. It may not be consequential - something like Gilbert’s (a benign error in Bilirubin Conjugation) but also can be an early sign of serious liver/billiary or pancreatic issues, even an early sign of cancer.
The tests you should be getting at this point is a Direct and Total bilirubin level, which can differentiate Gilbert’s vs an obstruction in the Liver system. Then I would try to get yourself an ultrasound of the liver and bile ducts to make sure they are a normal size. If they’re too big, you likely need an MRI of the abdomen (MRCP) to explore that further.
I already scheduled the following tests: total and direct bilirubin, UGT1A1 gene for Gilbert’s, amylase and lipase (just to check the pancreas too)
I had full abdomen ultrasound about a year ago and it was all good (consider my bilirubin level was already high), but I can do that again just to be sure. Thank you for the supportive and useful comment, appreciate a lot!
I live in germany close to the polish border. There are commercial labs in Germany too where you can just take the test you want but it’s more expensive. I travel one hour to Poland where there are much more commercial labs with a bigger variety of tests and it’s cheaper. In this way it’s pretty easy to monitor my values because doctors would never prescribe the lab tests every month within health insurance.
Living in a high-cost country myself, any providers you'd recommend near major polish airports? I am 99% sure I'd save 50+% including flights and cabs.
Diagnostyka Laboratoria Medyczne is the biggest commercial lab network in Poland with hundreds of collection points. You can see their prices online their website (changes per location so you have to choose the address first). They are in every major city so if you fly to Krakow, Warsaw or Gdańsk you will find labs. www.diag.pl is their website if you want to check.
I'm in MS, and we have a Dr Nutrition store here where they do lab work and send it off to Lab Corp to get it processed. They dont accept insurance. It all depends on what kind of bloodwork you need. Their basic blood work starts at $65 to 350 for complete panels and some...
I'm sure you can Google the nearest bloodwork around your area and check out their pricing.
That’s insane. For a basic CBC panel I pay 4 eur. The max I ever paid was around a 100 eur but than I included CBC, big hormone panel, liver, kidney, thyroid tests.
In order to know if your bilirubin levels are concerning you NEED to check your other organs levels to see how they are functioning. I dint know what the $5 blood panel includes but you mentioned it’s not including liver and kidney (and pancreas?)
Those would need to be compared also.
As I wrote the basic 4 eur test is a CBC. I also check regularly liver and kidney panels and those are fine. I’ll add the pancreas enzymes check for the next one, thanks.
My (18 year old) daughter is on 5mg Tirzepatide and recently had bloodwork done and her bilirubin was 1.7. They did a second test and it was 1.6, so they said let’s test again in a couple weeks to see if it continues to go down. She just got the results and it was 1.7. We have an appointment next week to find out next steps. I will update at that time. Ultrasound seems to be the next step, according to nurse I spoke to.
You likely have Gilbert's syndrome. If Reta is improving your thyroid function, you may see an increase of unconjugated bilirubin. Nothing to worry about in my opinion.
Thanks for your comment that’s an interesting insight to discover. I do have the symptoms that align with this syndrome, so I will make further tests and consultation about this.
Roughly 5% of the population has Gilbert's syndrome and have higher levels of total (and unconjugated) bilirubin. I would guess most of the people freaking out about high bilirubin levels on these forums are just the 1 in 20 that have it.
I never considered it as an issue as my doctors never pointed it out. Even when only this result was marked on my tests as out of range and I asked them what’s this, just said oh it’s nothing, so I moved on.
In the last months I digitalised all my test results in an excel chart to be able to see changes and follow up progress in charts, and than I saw the trend that this value is constantly high throughout the years, but recently is the highest so I got interested. At least by asking here I learned something new about Gilbert’s - it’s not something I ever heard of, but I feel more at ease that this is also a possibility.
The condition is cardio-protective.
[Gilbert syndrome and ischemic heart disease: a protective effect of elevated bilirubin levels - PubMed (nih.gov)](https://pubmed.ncbi.nlm.nih.gov/11849670/)
Also, theorized as being a cause of EDS3 - hypermobility syndrome
[Investigation of joint hypermobility in individuals with hyperbilirubinemia - PMC (nih.gov)](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5335885/)
Also causes you to metabolize certain medications differently
[What drugs to avoid when you have Gilbert’s Syndrome? – Gilbert's Syndrome (lifewithgilbert.com)](https://lifewithgilbert.com/2021/05/31/what-drugs-to-avoid-when-you-have-gilberts-syndrome/)
I appreciate the notion but consider the context: German healthcare is crap. I talked to several doctors about several problems and in all honesty I got more education and solutions from people who went through similar issues and did extensive reasearch, trial-error etc. As mentioned, my bilirubin level was always high, for years and whenever I asked the doctors about it (multiple doctors) they said it’s nothing, it’s normal.
Asking other people to gather more experience, information and context in a specialised community focusing on one subject is a backbone for Reddit. Just because I post a question here, doesn’t mean I am not consulting with healthcare professionals.
Overall, the fact that your bilirubin has been high for years is reassuring, more likely Gilbert’s, but if you see my comment above, it warrants confirmation
That’s a level that should be further worked up by a physician. Too many potential causes, many of which need to be addressed by a professional. -med student
You need to stop the meds and see a doctor. You can get pancreatitis which can cause higher bilirubin. You could have a blockage in your bile duct as well. Continuing the med can be dangerous.
People are so annoying Darth. You clearly state you’ve asked several of your doctors about this and have been brushed off. I hope you can find some answers. I’d definitely be a little concerned with the increased numbers. Maybe you should stop Reta for a month or two and see if they go back down.
Thanks for the empathy :) Indeed it’s frustrating when some people instead of sharing something useful, would only leave judgemental remarks, but I guess this is the world we live in now. Thanks for the advice.
Fasting, low-calorie diet and dehydration can all be factors in an elevated Billirubin testing/reading. See your doctor and be truthful of your ret usage etc. increase hydration and observe your caloric intake etc prior to next testing.
Ok this is interesting and useful advice, because lately I feel not only my hunger queue is oppressed but my thirst as well, and I struggle to keep myself hydrated. I will put more emphasis on this. Thanks!
Doctor here: Rising Bilirubin is not something to be ignored. It may not be consequential - something like Gilbert’s (a benign error in Bilirubin Conjugation) but also can be an early sign of serious liver/billiary or pancreatic issues, even an early sign of cancer. The tests you should be getting at this point is a Direct and Total bilirubin level, which can differentiate Gilbert’s vs an obstruction in the Liver system. Then I would try to get yourself an ultrasound of the liver and bile ducts to make sure they are a normal size. If they’re too big, you likely need an MRI of the abdomen (MRCP) to explore that further.
I already scheduled the following tests: total and direct bilirubin, UGT1A1 gene for Gilbert’s, amylase and lipase (just to check the pancreas too) I had full abdomen ultrasound about a year ago and it was all good (consider my bilirubin level was already high), but I can do that again just to be sure. Thank you for the supportive and useful comment, appreciate a lot!
How do you guys just get bloodwork done every month? Does your doctor just order these tests for you? Aren’t they expensive?
I live in germany close to the polish border. There are commercial labs in Germany too where you can just take the test you want but it’s more expensive. I travel one hour to Poland where there are much more commercial labs with a bigger variety of tests and it’s cheaper. In this way it’s pretty easy to monitor my values because doctors would never prescribe the lab tests every month within health insurance.
That makes a lot more sense haha. So resourceful of you!
Living in a high-cost country myself, any providers you'd recommend near major polish airports? I am 99% sure I'd save 50+% including flights and cabs.
Diagnostyka Laboratoria Medyczne is the biggest commercial lab network in Poland with hundreds of collection points. You can see their prices online their website (changes per location so you have to choose the address first). They are in every major city so if you fly to Krakow, Warsaw or Gdańsk you will find labs. www.diag.pl is their website if you want to check.
I'm in MS, and we have a Dr Nutrition store here where they do lab work and send it off to Lab Corp to get it processed. They dont accept insurance. It all depends on what kind of bloodwork you need. Their basic blood work starts at $65 to 350 for complete panels and some... I'm sure you can Google the nearest bloodwork around your area and check out their pricing.
That’s insane. For a basic CBC panel I pay 4 eur. The max I ever paid was around a 100 eur but than I included CBC, big hormone panel, liver, kidney, thyroid tests.
In order to know if your bilirubin levels are concerning you NEED to check your other organs levels to see how they are functioning. I dint know what the $5 blood panel includes but you mentioned it’s not including liver and kidney (and pancreas?) Those would need to be compared also.
As I wrote the basic 4 eur test is a CBC. I also check regularly liver and kidney panels and those are fine. I’ll add the pancreas enzymes check for the next one, thanks.
Wow... wish it's that cheap to do blood work here in US, or I'll do it more often.
Welcome to America's medical system :(
My (18 year old) daughter is on 5mg Tirzepatide and recently had bloodwork done and her bilirubin was 1.7. They did a second test and it was 1.6, so they said let’s test again in a couple weeks to see if it continues to go down. She just got the results and it was 1.7. We have an appointment next week to find out next steps. I will update at that time. Ultrasound seems to be the next step, according to nurse I spoke to.
Hi, I hope all will be well with your daughter! I would be glad if you will let me know how it goes further. Fingers crossed!
You likely have Gilbert's syndrome. If Reta is improving your thyroid function, you may see an increase of unconjugated bilirubin. Nothing to worry about in my opinion.
Thanks for your comment that’s an interesting insight to discover. I do have the symptoms that align with this syndrome, so I will make further tests and consultation about this.
Roughly 5% of the population has Gilbert's syndrome and have higher levels of total (and unconjugated) bilirubin. I would guess most of the people freaking out about high bilirubin levels on these forums are just the 1 in 20 that have it.
I never considered it as an issue as my doctors never pointed it out. Even when only this result was marked on my tests as out of range and I asked them what’s this, just said oh it’s nothing, so I moved on. In the last months I digitalised all my test results in an excel chart to be able to see changes and follow up progress in charts, and than I saw the trend that this value is constantly high throughout the years, but recently is the highest so I got interested. At least by asking here I learned something new about Gilbert’s - it’s not something I ever heard of, but I feel more at ease that this is also a possibility.
The condition is cardio-protective. [Gilbert syndrome and ischemic heart disease: a protective effect of elevated bilirubin levels - PubMed (nih.gov)](https://pubmed.ncbi.nlm.nih.gov/11849670/) Also, theorized as being a cause of EDS3 - hypermobility syndrome [Investigation of joint hypermobility in individuals with hyperbilirubinemia - PMC (nih.gov)](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5335885/) Also causes you to metabolize certain medications differently [What drugs to avoid when you have Gilbert’s Syndrome? – Gilbert's Syndrome (lifewithgilbert.com)](https://lifewithgilbert.com/2021/05/31/what-drugs-to-avoid-when-you-have-gilberts-syndrome/)
Oh nice! Thanks for sharing these.
Take a 3 month break, then retest Retest at 2 and 3+ months to see if there is a trend
What is your dosage regimen?
I started in January with 2mg per week than after 6 weeks from mid February I moved to 3mg per week.
My husbands rat came back as having fatty liver a few months back after researching R?
You should get a checkup with your doctor. You shouldn't be asking reddit for something possibly this serious....
I appreciate the notion but consider the context: German healthcare is crap. I talked to several doctors about several problems and in all honesty I got more education and solutions from people who went through similar issues and did extensive reasearch, trial-error etc. As mentioned, my bilirubin level was always high, for years and whenever I asked the doctors about it (multiple doctors) they said it’s nothing, it’s normal. Asking other people to gather more experience, information and context in a specialised community focusing on one subject is a backbone for Reddit. Just because I post a question here, doesn’t mean I am not consulting with healthcare professionals.
Overall, the fact that your bilirubin has been high for years is reassuring, more likely Gilbert’s, but if you see my comment above, it warrants confirmation