I am still lurking. Was sent to gastro with positive mitochondrial antibodies, have had a liver biopsy the week before Christmas. Yesterday i got a letter for an mri of my liver.
I have had no results. When i saw gastro, all of my bloods had gone back to normal, i had raised ast, bilirubin, low white cells etc but then normal and have had none since.
Hard to know how to find liver biopsy results, and no one seems to be able to give me results.
Its such a pleasure waiting so long!! Would rather know one way or other so i can oroperly adapt.
I am not a big drinker, but i stopped completely before Christmas but was a way with the girls at the weekend. If i knew i had PBC i would definitely give it up to give me the best chance. Just frustrating
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Podiatristkaty
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You have a right to see any and all test results. At least here in the States you do. Just from experience, ... Biopsies are "not" the gold standard for diagnosing PBC. Many doctors still do them to rule out other issues. Also, no harm in having an MRI or an ultrasound, I think we've all been there, but having an MRE (magnetic resonance elastography) will accurately show if there is any fibrosis in your liver. It's over 90% accurate in staging PBC if you have it. An MRE is done using the same equipment as an MRI, but the MRE software must be added to the MRI equipment in order for the MRE to be performed. Not all hospitals offer MRE. This procedure, performed very much like an MRI sees the liver differently, it shows it in color coded layers. Google MRE. It's really amazing.
I sure hope you are in the clear. But, if not, ask to have an MRE in order to get an accurate baseline in starting your PBC journey. I hate to go on, but hopefully this will add impetus to my statements above...
In Oct. 2016 I presented with elevated alk-phos and positive AMA-M2 (anti mitochondrial antibodies). My doctors did SEVERAL tests, including an ultrasound and "a biopsy." My results were (from the biopsy) "mild fatty liver" that's it. All other tests were normal. BECAUSE my hepatologist had other PBC patients, he knew elavated alk-phos plus a positive AMA-M2 meant PBC. His diagnosis was... and I quote, "No PBC. You have mild fatty liver. However, your positive AMA-M2 plus your elavated Alk-phos are strong indicators you may develop PBC." So, about 2 months later he started me on URSO anyway. It was on this forum that I learned that biopsies don't accurately tell the "whole story." To quote.... "They take a very small sample from a huge organ. What if they take that small sample out of a healthy part of your liver. They'll miss finding the PBC."
That information haunted me for 2 years. And in 2 years my liver enzymes fluctuated even on URSO. They slowly climbed. I learned about MRE on this forum from others. I hunted down a facility that did them and had one. My results put me in "early stage 2." That totally surprised me. Just 2 years earlier my doctor, off of a biopsy result said all I had was mild fatty liver! So, two things came to light..... I DID have PBC, and I was NOT responding to URSO as good as they hoped.
Tomorrow I start Ocaliva. I'm still on URSO too. What I will do from now on though is, have an MRE once a year to accurately monitor my PBC progression. And just to let you know, I feel basically pretty normal. Slight fatigue, a few liver aches when I eat badly. I DO NOT drink. Not even special occasions. I baby my liver. My vice is Chinese food 😩. I love to cook and eat!!!
I fear I'm a fast PBC progressor. I don't know only having had one MRE last year. I'll have another in October this year. Hopefully starting Ocaliva will help. We will see. ❤
Hi. I am in the same boat you were in. Positive AMA M2 and slightly elevated ALP that has been declining in its own. I’m being monitored on suspicion of PBC. Out of curiosity, how elevated was your ALP initially?
I had my thyroid removed and immediately following my ALP was 240, then 204, then 189, and a month ago 161. I have no symptoms and no other abnormal results. Some have said it’s curious that it’s declining without meds because with PBC it typically stays high or climbs. I’m not quite sure what to make of it.
Liver enzyme exam. Liver function tests check on the health of this organ. Not only does the liver play a role in the chemical process that develops thyroid hormones, but untreated hypothyroidism can cause problems in liver function over time. Additionally, sometimes people with hypothyroidism also have liver problems that need attention. The results of a liver panel test can't diagnose a condition, but the pattern of results along with symptoms will help your doctor decide on any next steps. This blood test can look at alanine aminotransferase (ALT), alkaline phosphatase (ALP), bilirubin, albumin, total protein, gamma-glutamyl transferase (GGT), lactate dehydrogenase, and prothrombin time.
Pamcakes...interesting about your thyroid. I had party thyroidectomy when I was in Jr high. When I was 23 the remaining portion became overactive & I had to take a dose of radioactive iodine to kill it. I recently saw a hepatologist. He believes my absence of thyroid contributed greatly to my developing PBC & that I’ve had PBC for many years. I knew PBC can affect the thyroid but never knew the thyroid could cause this.
I asked my endocrinologist whether there are any clinical associations between the thyroid & liver issues. She said there was no direct link that she knows of.
I will also ask my hepatologist this question & see what his view is, though he has said to me thyroid issues are very common in people with pbc. There might not be a direct cause or effect but the liver plays a role in developing thyroid hormones. The body is very complex so more research is needed. Unfortunately pbc is rare so research is not as rampant as other conditions that are more prevalent.
It’s interesting because my hepatologist told me that as TSH goes down, ALP goes up. However in my case the opposite was true. When my TSH was 33, ALP was 240...as my TSH has gone down so has ALP. My TSH is now in normal range so I’m curious what my ALP is. In Jan, my TSH was 11 and ALP 161. It’s so frustrating that I’m not following the textbook answer on this but I’m hoping it means I don’t have PBC yet. As I have a positive AMA M2, I know it’s only a matter of time.
Per my endocrinologist, the Alk phos factor in thyroid conditions are bone related and not liver related. Alk phos is not specific to the liver. When it is flagged as abnormal in the labs, it can be either bone related or liver related. Therefore when doctors try to isolate the cause, they will also test for ggt.
Did your doctor test for ggt? Gamma-glutamyl transferase (GGT) is an enzyme that is found in many organs throughout the body, with the highest concentrations found in the liver. GGT is elevated in the blood in most diseases that cause damage to the liver or bile ducts. This test measures the level of GGT in a blood sample.
Normally, GGT is present in low levels, but when the liver is injured, the GGT level can rise. GGT is usually the first liver enzyme to rise in the blood when any of the bile ducts that carry bile from the liver to the intestines become obstructed, for example, by tumors or stones. This makes it the most sensitive liver enzyme test for detecting bile duct problems.
Here are some of the things the endo told me:
1) when the thyroid is hypo (tsh is high), the cholesterol goes up and you can feel or are more sensitive to cold
2) when the thyroid is hyper (tsh is low), alk phos goes up because of the bones
Hope this helps.
Hope you find your answers. I know how frustrating it is.
Yes I knew pbc could affect the thyroid but he says it can go the other way also. I’m not sure I buy it but I’ll definitely ask my other hep when I see him. Still waiting for Vit A results. Sent msg this afternoon. 😊
I had a similar elongated process and only had a diagnosis after 8 months and on Urso after a year. I think we all assume it should be straightforward but in cases of rarer conditions it can be more challenging. I had CT scan, MRI, nuclear scan, 2 biopsies and a surgical biopsy. For the reason given above they wanted to ensure that they were able to sample the potentially damaged part of my liver. I also had a fibroscan so if you are referred to a liver specialist hospital it's likely you will have this.
I however presented with unusual symptoms (cross over of conditions) and they wanted to rule out anything more sinister, I was under an MDT so had weekly updates but even then they couldn't provide any definitive answers for months.
The positive is that I had a thorough check up! Do you know the consultant you are under? Are they a liver specialist or Gastro? You could phone his/her secretary and ask for an appointment to update on current results.
All patients in the Uk have a right to see results from any tests they have had. Bloods that yo-yo are so confusing and different consultants seem to vary about levels which is so confusing. Eat healthy keep fit and minimum alcohol or cut it out completely give your liver an easy time. Good luck
Technically/ Legally those results are yours, if you request them they have to give them to you.
You can ask if faculty has a Portal and get it going, then you can see all testing results at all time. I have 4 Portals set up, don’t have to bother with the Physicain unless questions..
Medical records or tech support should be able to set you up.
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Thyroid Biopsy Tomorrow
Liver Biopsy Negative can it still be PBC?
So confused, would love your opinions
Long road and still no diagnoses
Really ticked off
