I must admit, I have come here partly to vent, partly for anecdotal advice. Please bear with me...
My husband is 23, and six months ago began feeling strange pressure in his URQ and bloating. Eventually we went to the ER for some quick tests (yes we have insurance, no this is not cost effective). They did an abdominal CT (normal findings) and complete bloodwork, noting the only abnormality to be elevated total bili, at 2.0. Platelets were 136k, but they did not note an abnormality (I've always read 150 is low end but whatever).
When DH's (very mild) symptoms didn't subside months later (April or so), and due to the elevated bili, we decided to visit a GI, who gave in to doing a CBC, LFTs, and an ultrasound. What do you know, his bili has increased to 2.9 total and 1.0 conjugated(!!). The GI admitted this was not normal and NOT Gilbert's/anemia, but all liver enzymes were within range--on the low end even. Ultrasound was normal. Also, DH's platelets had dropped by about 8k to 128k. (Still not flagged as out of range for this lab, but this worried me and still very much does.) Also, albumin was slightly elevated at 5.2 but total protein was normal. GI did not test INR; DH has never been diagnosed with or shown signs of IBD.
So, what does the good doctor do? He refers my husband to a liver specialist. Okay, I get it. This case sucks. The man has barely any symptoms. But isn't it negligent to not screen for PSC in the meantime when he has an obviously increasing level of CONJUGATED bilirubin with no known cause? The problem obviously is that we are now still waiting to even hear back from this "special specialist," let alone meet with His Royal Highness. By dumping the case, our GI has cheated us out of like four weeks of testing.
So no, we are nowhere close to a diagnosis of PSC, and obviously I don't want to be. Still, I'm worried sick--conjugated hyperbilirubinemia is never normal. I guess my question is, has ANYONE heard of a similar situation (PSC diagnosis with such low grade abnormalities), and am I overreacting to what I perceive as pure laziness on the part of the GI? (Could he not have just ordered the $%#@ MRI while we wait?)
Thanks for reading.... This is a fantastic community and I admire everyone here so much.
My only abnormality is bili about 2 (and colitis).
My GI sent me to get MRI. At first, radiologist did not see anything in the images, but my GI also looked the images and they discussed the images over phone and concluded that it is psc.
So I think MRI makes more sense than liver doc in early phase.
Thanks very much for your insight. What caused you to be screened for PSC, was it the bili or the UC? I am assuming you were diagnosed in the very early stages then. What has your progression been and have you since showed signs of more full-blown PSC?
Any help is appreciated!
Ted said:
Yes.
My only abnormality is bili about 2 (and colitis).
My GI sent me to get MRI. At first, radiologist did not see anything in the images, but my GI also looked the images and they discussed the images over phone and concluded that it is psc.
So I think MRI makes more sense than liver doc in early phase.
Hello…by your summary, assessment, and questions, I’m wondering if you are a nurse, or other healthcare professional… I’m a nurse, and had quite a time processing the diagnostic process, and the literature. Here’s some of what I learned about the strategy of diagnosing, and navigating the doctors…
PSC is deemed rare, though new theory is emerging that it’s more common. Therefore, not on the radar, and deemed worthy of specialist territory. Most doctors if ever they see it, may only have seen it a handful times, and presentation can vary greatly.
another reason it’s specialist territory is that there are many conditions to be ruled out, and potential complications to assess.
to promote continuity, and avoid duplicative efforts, and get the most accurate, and thorough, evaluation, a specialist is best.
this a hard one to know…there is nothing to be done urgently until an emergent blockage happens where an intervention can help.
there is no treatment or cure yet, symptom management is limited.
ruling out other diseases, and evidence of strictures from sclerosing is obvious on MRCP, versus MRI.
more obvious PSC symptoms are signs of generalized infection from pooling bile, night sweats, itching worse at night in early stages. Bili can be elevated, but more often alka phos
Specialists are difficult to see quickly because they are fewer, and they are busy with the more urgent, and advance, and transplant patients.
All very serious, alcohol, hep A, B, or C, or PBC…and other possibilities…but few with urgency until levels get higher, and complications arise. In which case, you go to ER, and will get a specialist.
time does matter to you both, and in some condition management…you could try 2 things, ask GI specialist to order MRCP, but may not work as there is protocol leading up to that, and try calling liver specialist office to get on cancellation call list.
once MRCP is ordered call immediately to make appointment to get the authorization process triggered more quickly.
in the meantime change anything that isn’t liver friendly, meds, diet, no ETOH, minimize stress, etc…
I’m sorry you are having to experience the illness, and the wait, and worry. I hope this helps.
Just the fact that your GI is referring you to a specialist might indicate that he/she sees that this diagnosis warrants someone who is more familiar with the specifics of diagnosing liver disease. I’d go with it and respect the GI for sending you on. I believe the good doctors are the ones that don’t have big egos and recognize when another doctor would serve you better. And yes, instead of sending you on for tests that might need to be repeated (ie:MRI and MRCP can be done at the same time, records can be at one facially: a huge convenience long term). It is good that you are on top of managing your care. This is important… but the anger won’t serve you. Asking questions in a calm manner would be best. Call the doctors office and ask those questions you have. See if there is good reasoning. Learn through your questions. It seems too that elevated LFT is pretty standard. I know 4 weeks sounds long and it is frustrating not knowing. Welcome to the world of PSC. Not knowing how things will go with any of it is the name of the game. There are lots of lessons to be learned about life in all of this. Patience while staying vigilant is one of them. I go through this lesson daily dealing with my husbands PSC. It is difficult and I empathize with you greatly. Best to you and your husband.
Thank you so much for you reply. It's funny you should ask if I am in healthcare. I'm earning my BSN right now, so not registered yet, but I'm very familiar with all these labs--it really helps!
I appreciate your advice so much. There are many conditions to be ruled out, and I know we'll appreciate the help and eyes of a specialist when we get to that point. We eat well with very little ETOH--completely cutting it out now, of course, while we wait and see.
Thank you again, Windward.
Windward said:
Hello...by your summary, assessment, and questions, I'm wondering if you are a nurse, or other healthcare professional... I'm a nurse, and had quite a time processing the diagnostic process, and the literature. Here's some of what I learned about the strategy of diagnosing, and navigating the doctors... 1) PSC is deemed rare, though new theory is emerging that it's more common. Therefore, not on the radar, and deemed worthy of specialist territory. Most doctors if ever they see it, may only have seen it a handful times, and presentation can vary greatly. 2) another reason it's specialist territory is that there are many conditions to be ruled out, and potential complications to assess. 3) to promote continuity, and avoid duplicative efforts, and get the most accurate, and thorough, evaluation, a specialist is best. 4) this a hard one to know..there is nothing to be done urgently until an emergent blockage happens where an intervention can help. 5) there is no treatment or cure yet, symptom management is limited. 6) ruling out other diseases, and evidence of strictures from sclerosing is obvious on MRCP, versus MRI. 7) more obvious PSC symptoms are signs of generalized infection from pooling bile, night sweats, itching worse at night in early stages. Bili can be elevated, but more often alka phos 8) Specialists are difficult to see quickly because they are fewer, and they are busy with the more urgent, and advance, and transplant patients. 9) All very serious, alcohol, hep A, B, or C, or PBC..and other possibilities...but few with urgency until levels get higher, and complications arise. In which case, you go to ER, and will get a specialist. 10) time does matter to you both, and in some condition management...you could try 2 things, ask GI specialist to order MRCP, but may not work as there is protocol leading up to that, and try calling liver specialist office to get on cancellation call list. 11) once MRCP is ordered call immediately to make appointment to get the authorization process triggered more quickly. 12) in the meantime change anything that isn't liver friendly, meds, diet, no ETOH, minimize stress, etc.. I'm sorry you are having to experience the illness, and the wait, and worry. I hope this helps.
Stephen, thanks so much for your reply. The ambiguous part is that my husband really doesn't have other symptoms right now. He's continuing work, workouts, etc. like normal. In fact, six months ago I kind of dismissed his complaints because they were so mild. (We females get bloating and cramps at least once a month, if you know what I mean!) But when the bili just happened to come back so high, I switched into survival mode, and now I want answers.
On the one hand, I know I'm having a pretty strong reaction to a situation that is still unclear. I think it's just scary when I'm VERY aware of the possibilities and it almost seems like the GI hadn't even considered this one before sending us on...
Stephen said:
Yes, I think your GI was a little negligent here by not testing for PSC. It's a tough disease to nail down but who knows why he didn't follow through. The waiting is very hard when you want a diagnosis. I am hoping when you do get in to see your liver specialist he or she does a complete review.
Have you considered calling them and getting on the cancellation list ? You never know, you might get in earlier.
Other than the bloating and strange pressure in his URQ, how is your husband feeling ? Any fatigue ? Chills, nausea ?
Hi, Dolphin! Thanks so much for your words of advice about stress and anger. I know how right you are, and my incessant research hasn't necessarily helped that situation. The GI doesn't seem nearly as worried as I do, which is both nice and frustrating, but I could probably take a page from his book...
Was your husband diagnosed with elevated LFTs?
Dolphin5 said:
Just the fact that your GI is referring you to a specialist might indicate that he/she sees that this diagnosis warrants someone who is more familiar with the specifics of diagnosing liver disease. I'd go with it and respect the GI for sending you on. I believe the good doctors are the ones that don't have big egos and recognize when another doctor would serve you better. And yes, instead of sending you on for tests that might need to be repeated (ie:MRI and MRCP can be done at the same time, records can be at one facially: a huge convenience long term). It is good that you are on top of managing your care. This is important... but the anger won't serve you. Asking questions in a calm manner would be best. Call the doctors office and ask those questions you have. See if there is good reasoning. Learn through your questions. It seems too that elevated LFT is pretty standard. I know 4 weeks sounds long and it is frustrating not knowing. Welcome to the world of PSC. Not knowing how things will go with any of it is the name of the game. There are lots of lessons to be learned about life in all of this. Patience while staying vigilant is one of them. I go through this lesson daily dealing with my husbands PSC. It is difficult and I empathize with you greatly. Best to you and your husband.