I am writing on this very friendly forum with a hope to get some advice. Has anyone had a similar situation?
I am very worried and confused.
I am a 43-year-old woman. Some of my symptoms began manifesting approximately a year ago. I experienced rapid, unexplained weight loss unrelated to dietary changes, along with severe fatigue, brain fog, blurred and distorted vision, intermittent nausea, pale stools, a persistent sweet, musty taste in my mouth. Additionally, spider angiomas are present on my abdomen and chest, my palms are reddened, dry skin, nails are white with a thin pink band at the ends and fine veins have appeared on my abdominal skin, which were not noticeable before. My symptoms are getting worse. I have pain in the right upper abdomen, muscles waste, hands tremor, extreme fatigue, legs edema, gait problems, abdomen distension, shortness of breath, dizziness, pressure-like headaches and tinnitus. I am very tired and drowsy but I can't get good sleep.
I have been using oral contraception for about 17 years, as well as paracetamol and ibuprofen due to my back pain and occasional headaches. I was also a bit overweight and have been using regularly herbal extracts like green tea to help my metabolism.
I sought medical help and underwent various blood tests, including a liver panel, which consistently showed results within the normal range. Viral hepatitis has been excluded. Due to the detection of occult blood in my stool, a colonoscopy and gastroscopy were performed but the results were normal. Repeated FIT came back positive again. Fibroscan- F0. Liver ultrasound done few months ago says "slightly increased echogenicity and slightly heterogenous".
My normal life has stopped due to my symptoms and extreme fatigue. I will appreciate any reply/ advice. I don't know anymore what to do and where to look for help in identifying my health condition.
Thank you in advance.
Best regards.
Written by
Lin2024
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Gosh, the symptoms really do sound liver related. Bloods can be normal or relatively normal in the face of liver issues and the FIT tests are obviously a worry. The occult blood must be coming from somewhere. In your position I would be pushing hard for an MRI or CT scan of the abdomen so that the liver can be very thoroughly checked and other organs such as pancreas and spleen can also be checked. Wishing you well.
Thank you very much for your kind reply. I appreciate it. Sorry for my late reply but I was very drowsy and nauseous. Feeling horrible and hopeless. So it's possible to have liver disease even if LFT are not deranged. I have had single phase CT done but it didn't report anything back. It's hard for me to understand it because I feel pain in RUQ, heavy pressure in my chest and shortness of breath. I have lost a lot of weight and I have constant abdominal distension. My symptoms are very similar to liver cirrhosis symptoms ( as I red on BLT website) yet LFT are normal and CT scan says nothing. Wondering whether that could have been due to radiologist error? As I have mentioned my Fibroscan says FO but liver echogenicity and heterogeneity are increased. Are there any other liver diseases than cirrhosis, that could cause symptoms like mine but without affecting ALT, AST and bilirubin levels?
I will greatly appreciate any advice. My symptoms are unbearable. I don't know what to do anymore and were could I ask for help.
Your message reminded me of many other stories I’ve read here and my own journey to finding a diagnosis. I’d like to share my experience and offer support.
It’s easy to advise trusting your doctor and avoiding self-research, but in practice, that can be challenging. In my case, it took numerous tests and consultations with specialists before reaching the correct diagnosis. Initial diagnoses included irritable bowel syndrome (IBS) and depressive disorder. Eventually, my symptoms and complaints led to a preliminary diagnosis of liver cirrhosis at a local liver transplant center, based solely on clinical findings and my complaints. However, lab tests (including liver function tests), ultrasound, CT scans, and FibroScan didn’t show significant abnormalities. Even esophageal varices of grade 1 were noted by some specialists and missed by others. A turning point came when I underwent a laparoscopic liver biopsy. Only then was I diagnosed with nodular regenerative hyperplasia (NRH) and non-cirrhotic portal hypertension (NCPH). This provided clarity about my condition and ruled out unnecessary, potentially harmful treatments, such as psychiatric medications. Now, I manage hepatic encephalopathy (HE) with lactulose and L-ornithine L-aspartate, adding rifaximin during symptom flares. While my condition hasn’t significantly improved, I’m relieved it remains stable.
Have you already checked your blood ammonia levels as well as your bile acid levels after eating? Portal vascular Doppler could also help identify changes in portal hemodynamics. Perhaps if changes are found during these tests, this will help establish a connection to your complaints. In this situation, it is difficult to advise anything, but if we assume that your complaints may be related to the liver, as rightly noted in the previous reply, then your doctor should definitely expand the diagnostic search and include non-cirrhotic liver diseases in which both tests and imaging methods examinations are often uninformative. I assume that your GP may not be sufficiently competent in these matters, in which case it’s worth asking to be referred to a specialist in rare liver diseases.
My story is just one example of how complex and elusive liver conditions can be. I can’t offer specific advice, but I hope my experience helps. Remember to listen to your body and persist in seeking the right diagnosis.
I totally second this advice to keep pushing. You know your own body best, and your symptoms are worrying. In my own case I had much milder symptoms (nausea, bloating and debilitating fatigue plus random bouts of RUQ pain) for nearly a year before my Hep C was discovered. My own liver bloods were slightly elevated but the doctors were not that worried. In the end, after scans galore, endoscopy etc they did do the full liver panel because the only obvious clue was the slightly deranged liver bloods. I was fortunate to have private health cover so I could get all these tests because I am totally sure the NHS would have fobbed me off, since my symptoms were debilitating but not drastic and I had no red flags for Hep C in my history. I was lucky my Hep C was found when it was because it had not yet caused irreversible liver damage.
I have one piece of strong advice: stop the Ibuprofen !!! I ended up in the hospital with gastric bleeding caused by taking it regularly. There was an article about the hazards in the Washington Post recently. Maybe you can find it online. lana
Thank you all very much for your replies and advices. I truly appreciate it. I realise that nobody can give me diagnosis here- online and that I need medical evaluation which I am desperately looking for! The whole problem is that despite having symptoms and visible signs, which are liver related, my LFT are normal. Therefore I am having huge difficulties to get a refferal to a liver specialist. My condition is progressively getting worse. Brain fog, confusion, nausea, sweet musty taste, URQ pain, extreme fatigue, pain allover my body, leg swelling and numbness, hand tremors, fainting like spells... I have no physical strength anymore, bed-bound, unable to function. I believe that it can be a case of non cirrhotic liver disease which is possibly causing a portal hypertension but I am not a doctor, I can't refer myself anywhere. I haven't had ammonia test but my postprandial bile acids were above the range. I need help from an experienced hepatologist BUT how can I get a refferal if my blood results are normal and they do not point to a standard liver disease like cirrhosis. It's a vicious circle. Sadly it does looks like all what primary care doctors are able to recognise is cirrhosis BUT there are other serious liver diseases not only cirrhosis that can cause horrible symptoms, complications and death. All what I am asking for is medical help..I don't know anymore what to do, waiting in pain for something bad to happen I guess. Feeling hopeless and my suffering is impossible to bear anymore..Thank you again for all your helpful replies.. Wishing you well.
If you are based in the UK and can afford a private consultation then you can look for a liver specialist at your nearest private hospital and see them for some advice. Ideally you would be referred by your GP but if you are paying privately it is very unlikely your GP will refuse the referral. Even if you cannot get a referral from the GP it is highly likely a specialist would accept a self-referral.
Thank you for your kind advice. Yes, I am in the UK. I have had a phone consultation with the GP yesterday. I have asked for a referral to see hepatologist and it was a big NO because my liver function tests are normal. I have received instead... a pelvis ultrasound not even abdominal ultrasound (that I have asked for). RUQ pain, positive fit, nausea,sweet musty taste, pale stools, muscle waste, cramps, brain fog, drowsiness, extreme fatigue, spider angiomas,leg edema, skin pigmentation, hair loss, Terry's nails, gait problems, shortness of breath.. I can't understand how could pelvis problem cause symptoms like that...Waste of money and time..No logic in this at all. Devastating..Best Regards
I know you have asked my advice on the other thread you've been posting on and I do wonder what is going on in your case. You list a lot of symptoms - if cirrhosis were the cause of many of these then it WOULD be reflected in deranged bloods - things like the Hepatic Encephalopathy type symptoms come about due to increased toxins in your blood, oedema and fluid build up would usually come about due to reduced albumin and potentially deranged kidney function too. Obviously nothing on scans indicates cirrhosis but the increased echogenicity and 'slightly' heterogenous texture reveal that something is changing the texture of the liver.
What has your doctor said about these findings?
I would say that symptoms of decompensated cirrhosis don't generally come about when you have normal blood tests so they need to investigate other causes, hence, the pelvic scan which can be used to look at all manner of organs and for all sorts of potential issues.
I don't know of other issues other than the Nodular Regenerative Hyperplasia (as Fibro2021 has mentioned) that can lead to symptoms akin to cirrhosis but don't know anything it personally.
My experience has all come through supporting hubby through his journey from decompensated cirrhosis to recompensated to two times listed for transplant and now (hopefully) successfully transplanted.
I do know you need to be the squeaky wheel, have you put all your symptoms in writing to your doctors and asked the question IF it's not cirrhosis WHAT IS causing all these issues?
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