Undiagnosed liver failure

[Motik]

Hello, My name is Ivo and I am from Bulgaria...I have some kind of subacute liver failure that cannot be diagnosed because of normal blood tests, normal ultrasound, CT scan. Biopsy is refused, because of normal results, Its been two - three months since the begining...Im 10 kilos down, my skin is peeling, extreamly weak, have some kind of HE. Ive been in several clinics these months with diagnose enlarged liver with gallstones. My head MRI is showing some kind of lesions, but the doctors said it might be MS. I spoke to a friend neurologist, he said these mri findings are not typical lesions for MS, its looks more like hepatic encelophaty...yet no diagnose. Im scared.. Please give me some advice.

[-JDN-]

Ivo,

Be sure to find out specifically what was tested in your blood work. AST, ALT, Bilirubin, Bilirubin Direct, Albumin and Alk Phos should be included in the panel. I would suggest that if they are all within normal ranges, request that they be repeated. Also, I suspect that liver problems would present in blood work prior to presenting as HE (BUT I AM NOT A DOCTOR AND YOU SHOULD NOT RELY ON MY SUSPICIONS ALONE). I suggest, if you have not done so already, keep a notebook/journal of signs and symptoms (date/time/description) to share with your doctor along with when you first noticed there was something wrong and how it presented. Be your own advocate. I do not know a thing about the Healthcare system in Bulgaria, but if you are able to get a second opinion, do some research and figure out how to get to someone who may take more interest in your case. Perhaps a hospital that does clinical research. Finally, stay positive. You can either go through this and be miserable or go through this and be positive. Stay strong!!

[Motik in reply to -JDN-]

JDN,thanks for the positive words. Im doing weekly blood tests.. I had medical interests once and im familiar with what blood tests are needed. I met few liver specialists since my problems started. All with the same opinion. Blood tests should show something... I am trying to get some doctors attention almost every day. You know damaged liver is causing much problems brain, vascular... Like in my case. I will try to seek for some doctor who is listening to me and my symptoms... Liver as we all know is silent and not complaining even if its badly damaged...My body is feeling broken (my heart rate dropped, my blood pressure dropped, I've lost my muscles I have strange aches, nausea, dizziness, hot flashes....etc) but im focused on survival . Its very scary because medical care in Bulgaria is not that good...

[Alibaba80 in reply to Motik]

I have these symptoms too. My blood pressure and heartrate are also always low. How long have you had these symptoms?

[Motik in reply to Alibaba80]

9 months already... when I wrote this post I thought I have some kind of acute liver failure...I didn't have much info about what was happening with me

[Alibaba80 in reply to Motik]

And are you still as ill now as you were?

[Str8jacket]

Sorry to hear what you're going through. Do you have a reason to suspect liver failure?

Don't know much to suggest other than keep getting evaluated, don't rule out the possibility it's something other than the liver, especially if you don't have a specific risk (hepatitis virus, alcoholism, etc.). There are many people here who have mentioned having cirrhosis despite normal bloodwork and scans. Can you find a private fibroscan?

Is lactulose available in Bulgaria without a prescription?

[Motik in reply to Str8jacket]

Hello Str8Jacket, thanks for the reply. Yes I did fibro scan few times... F0-F1 were the results. The fibroscan shows only the stiffness of the liver and now im trying to convince the doc that I need biopsy in order to figure out the real status of my liver. About the risk...yes I did have risk factor. At the end of January I was on a party with booze...and i get drunk and other tree days i felt very bad. I suspect that there was something else in the alcohol. Regarding the lactulose, yes we have free of perscription and im using it ..feel little better. Im also using LOLA....

For few months I was on medical exams and all other sickness/ diseases were excluded. I had an appointment with psychiatrist aswell. He said im mentally OK and should search for the physical reason for my sickness.

[Str8jacket in reply to Motik]

I'm not a doctor, but getting drunk once is not likely to cause chronic liver failure, maybe short-term hepatitis, which you can fully recover from (enzymes would have been high). Usually alcoholic cirrhosis follows many (10+) years of heavy drinking from what I have read. If it was HE, one would also expect lactulose and LOLA to help noticeably, I think. The fibroscan should be relatively accurate unless you have ascites/swelling. You have to keep going for tests until you find out what is wrong, but don't rule out other causes of your symptoms.

[Motik in reply to Str8jacket]

Its more lie subacute failure, Im just confused looking for answers

[Str8jacket in reply to Motik]

From drinking one time?

[Motik in reply to Str8jacket]

I suspect there were some kind of drug inside the alcohol as i mentioned above.

[Str8jacket in reply to Motik]

Did anyone else get sick?

[Motik in reply to Str8jacket]

I only knew one person from that party and she seems OK. I like that you are interested in my story.. I had much time to think about the whole story and the sickness, medical details..etc...and if you like I can share the details if any chat is available here

[Str8jacket in reply to Motik]

If you want answers from the community, best to share your info openly here for everyone. I don't really have more advice other than to keep seeking answers, and don't rule out any cause of your symptoms. Richard Allen seems to have a possible explanation for you. Seems like if the alcohol was poisoned, others would be sick too, you should be able to find out. Good luck, hope you get answers soon.

[Richard-Allen]

Good Morning Ivo, Sorry to hear of your ongoing liver problems. I am not medically qualified to say what this condition could be, but would like to offer a personal experience that should be considered just to rule out a possibility.

For eight years my wife suffered from an undiagnosed liver condition. One minute her liver enzymes would become high, and then a few weeks later return to normal. When they returned to normal, the condition was easily dismissed as being just a possible infection that was now all better. This rise and falling went on for several years. All additional tests and scans were refused, after all, everything was now looking fine.

My wife had her gallbladder some ten years previous, so gallstones was ruled out. Finally, after becoming concerned about this reoccurrence further tests were carried out.

After a few Ultrasound scans it was discovered, It was eventually discovered that my wife had some leftover gallstones that were becoming blocked and unblocked in the common bile duct.

Once a stone had become lodged in the bile duct, bile from the liver is unable to flow and can become blocked and infected. This then would cause the liver enzymes to rise and the liver to become unknowingly poorly. So, she was going to the doctor and having a blood test, that showed these high readings. Then, a few weeks later, this particular stone would become dislodged, and bile could flow once more. The liver would then repair any damage and all liver enzymes readings would return to normal.

This whole sequence of events would then be repeated, stone becoming blocked, liver enzymes rise and so on. She finally had an Endoscopic retrograde cholangio-pancreatography (ERCP) procedure carried out, where four left-over gallstones were finally removed.

I am not suggesting this is what is going on in your case, but some of these leftover stones can be rather elusive, and even an ultrasound scan can sometimes miss them.

You mention that you do happen to have gallstones so this may be relevant. Certainly, further investigation is required, in order the prevent possible bile infection and liver damage.

I hope this helps. Good Luck

Richard.

Gallstones in the common bile duct

[Motik in reply to Richard-Allen]

Hello Richard,

Thanks for the advice, I am feeling pretty well when someone believes .. Regarding the gallstones, doctors said that there were two of them, but the size was above 2 cm and cannot interrupt the gallbladder work and at this time there is no need of removal.

[Motik]

The worst moments in this situation are when your family doesn't believe, but believes in doctors pathetic opinion. When they think you are mentally NOT ok..there are pure evidences in all of my medical tests but every single doctor never took all of them in mind...to reach to reasonable diagnose...

The main concern that something is happening with my body.. and the only findings for the moment are some kind of brain lesions looking like hepatic encelophaty... My heart beat and blood pressure get lower like 90/50 and hr 50 bpm (they have never been lower before), and weight loss. But docs said it's ok, there is nothing to do with the liver....

[YummyBear]

Hi Motik, I'm sorry to hear about your health and how scared you are. The body is an amazing but complex piece of machinery in that it is unique to you alone. Consultants and Doctors are incredible but they don't know the answers to every condition. Millions of pounds are spent on medical technology and still they don't know all the answers. Blood tests and various scans are all they have to go on. Please rest assured that if your tests are normal, then please be positive. I've had liver disease for 5 years (without any adverse symptoms); it was diagnosed purely by chance after having a precautionary CT scan for an unrelated issue. I have no management, except monitoring 6-monthly with ultrasound scans and a yearly Endoscopy. Please be encouraged with the fact that by stressing over what your condition is, could exacerbate the situation and cause weight loss. In 1990 I had a stress-related condition which caused my face and right side of my body to become numb. This terrified me and after Scans and blood tests, nothing showed up; this helped me and 9 months later, I was fully recovered. Be positive and I wish you all the best, take care.

[Motik]

YummyBear, Every single minute I try to be positive and hoping for better days. Thank you for your story. God bless us all.

[Hidden]

If you had liver failure it would have been recognised and diagnosed by your doctors. Stop diagnosing yourself and looking for a donor.... this must be very stressful for your Mother. Think of the effect your worrying is having on your family.