I have controlled hashimotos and supposedly conteolled hypothyroidism, stomach problems (need aid of other acids to ecen break down food I eat.. like soup!) food allergies, yellowing knees and skin on top of feet and around mouth, extreme fatigue, biting sensation on skin, all hormonal imbalances that lead to depression etc but have learned how to ride that wave and not go there, fogginess, aching joints, stiffness, aching muscles, and more minor stuff. I live off applecider vinegar and dandelion tea not ao much.. and yellowing decreases and eventually goes away, but no other sypmtoms..but if i stop having them irs back in a few days/week. I have varicose veins starting to show their ugly heads and aching limbs, numb and tingly alllllllllll the time and can't stand for more than 10 mins without aching.
I had tests done but no idea what.. i think other auto immune diseases that are usually linked, and had ultrasound done.
No scaring found, but found fat on liver (I'm not overweight and can't understand how that's there when I've been relatively healthy and movey my whole life) but they did see and say that my spleen is larger than average.
And that was the end.
I just feel, in my boonness that I'm not to something but that it's probably too early to detect.. but yet again, i have no idea at all abiut this. Only my gut intstic.
Have you thought about getting a 2nd opinion from a GI or internal medicine doctor? What do your other doctors think? Do not search any more on internet. It will drive you insane.
I usually just try to get my doctors’ perspectives as they are the experts. I will though research things when they tell me what they think. So it would be a guided search.
I sincerely hope for you that you do not have PBC to add to your other problems. You do not say which country you are in so it makes it a bit more difficult to point you in the right direction, however for a diagnosis of PBC you will need bloods tests and possibly a liver biopsy which can be arranged by a hepatologist or a gastro enterologist. After diagnosis those who have PBC are usually given ursodeoxycholic acid to help with bile flow.
This is what European guidelines are for diagnosing pbc. The audience for this material are doctors.
The EASL has issued the following recommendations, with grade of evidence and grade of recommendation following each one in parentheses. The evidence and recommendations have been graded according to the grading of recommendations assessment development and evaluation (GRADE system).
1. Take a detailed history and administer a physical examination when evaluating patients with biochemical tests that suggest cholestatic liver disease (III, 1).
2. Ultrasound is recommended as the first-line non-invasive imaging procedure to differentiate intra- from extrahepatic cholestasis (III, 1).
3. Performing serologic screening is recommended for antimitochondrial antibodies (AMA) and PBC-specific antinuclear antibody (ANA) by immunofluorescence in all patients with unexplained cholestasis (III, 1).
4. Imaging by magnetic resonance cholangiopancreatography (MRCP) is recommended in patients with unexplained cholestasis. Endoscopic ultrasound can be an alternative to MRCP for evaluation of distal biliary disease (III, 1).
5. Consider liver biopsy after serologic screening and extended imaging in patients with ongoing unexplained intrahepatic cholestasis (III, 1).
6. Consider genetic tests for inherited cholestatic syndromes in patients when clinically appropriate (III, 1).
7. In adult patients with cholestasis and no likelihood of systemic disease, a diagnosis of PBC can be made based on elevated alkaline phosphatase (ALP) and the presence of AMA at a titre >1:40 (III, 1).
8. In the correct context, a diagnosis of AMA-negative PBC can be made in patients with cholestasis and specific ANA immunofluorescence (nuclear dots or perinuclear rims) or ELISA results (sp100, gp210) (III, 1).
9. Liver biopsy is not recommended for the diagnosis of PBC, unless PBC-specific antibodies are absent, co-existent autoimmune hepatitis (AIH) or non-alcoholic steatohepatitis (NASH) is suspected, or other (usually systemic) comorbidities are present (III, 1).
10. AMA reactivity alone is not sufficient to diagnose PBC. Follow up with patients who have normal serum liver tests who are AMA-positive with annual biochemical reassessment for the presence of liver disease (III, 1).
11. Therapy in PBC should aim to prevent end-stage complications of liver disease and manage associated symptoms. (III, 1).
I have taken this from the British Liver Trust web site. You may have a similar charity in Australia and they may have a page more relevant to you for your country.
"Doctors can tell whether you have PBC on the basis of symptoms and a range of tests, including blood tests.
Antibody test: Most people with PBC have something in their blood called antimitochondrial antibody (AMA). An antibody is a chemical made by the body to attack an ‘invader’. Though doctors are not really sure why, the presence of AMA in your blood is an important sign that you have PBC.
Liver function tests (LFTs): This type of test is performed to gain an idea how the different parts of your liver are functioning. The Liver Function Tests are made up of a number of separate examinations, each looking at different properties of your blood.
In PBC, doctors will be looking for increased levels of both alkaline phosphatase (ALP), an enzyme released into the blood by damaged bile ducts, and the immunoglobulin IgM. The liver enzymes alanine transaminase (ALT) and aspartate transaminase (AST) are also monitored, although these are a measure of any leakiness or damage relating primarily to liver cells rather than the bile duct cells.
Ultrasound scan: This is used to check the condition of the bile ducts and to rule out the possibility that your symptoms could be a sign of a different liver problem.
Liver biopsy: If tests show you have PBC you may need a liver biopsy to see how serious the condition is."
hope this helps you
PaigeR, I'm in Australia (NSW Central Coast)
I've been diagnosed with PBC for 29 years now and from what I've seen in all the support groups I belong to, is, diagnosis now is pretty much the same as it was years ago.
You actually only need two of these three tests to get a diagnosis of PBC - my diagnosis was based on the two blood tests alone, the biopsies (I had two five years apart) were done to establish rate of progression - Ursofalk was not approved for use here in Australia at the time.
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