I have recently been on the forum and would like to introduce myself and tell everyone my story. probably this is something that I can still do for some benefit to others.
I am doctor MD from Ukraine. I got to this forum for the same reason as yours. Two years ago, I noticed changes in well-being, although some symptoms appeared much earlier (I noticed, Terry’s nails appeared since 2014). My sleep began to be disturbed. Double vision appeared and intensified. My gait changed and I began to feel a sharp weakness, twitching in the muscles throughout the body. There was an aversion to tobacco (and I sometimes smoked) and the taste in my mouth changed. My stool was getting less colored. The skin has become more pigmented, but I do not tan. For half a year I lost 35 pounds of weight. There are other symptoms that I will not list, so as not to waste time. According to the symptoms, I suspected of alcoholic cirrhosis and liver failure of the last stage. I have been drinking alcohol for a long time. These were moderate amounts but regularly enough (several times a week).
I turned to my colleagues for help, went through laboratory examinations, ultrasound, CT. They did not show much change. With fibrogastroscopy, varicose veins of the esophagus of the 1st degree were detected. Several times I did fibroscan and liver elastometry in different medical centers. Аll these examinations typically showed minor fibrosis (7-8 kPa).
No one doctor in Ukraine diagnosed me in an end stage liver failure because I have no cirrhosis. But, I have all the symptoms of this condition. I had 4 liver biopsies, but our pathologists could not say anything. These were the best pathologists in our country. I sent histology photos to Belgium. Only in Belgium I was diagnosed with Nodular Regenerative liver Hyperplasia (NRH) and Non-Cirrhotic Portal Hypertension (NCPH).
I read a lot of special medical articles about this conditions and learned that such patients not develop cirrhosis. Unfortunately, doctors do not know this well. Sometimes, but not necessarily, they develop Incomplete Septal Cirrhosis (ISC).
The whole difficulty lies in the fact that patients with NRH and ISC at the same time have good biochemical parameters in some cases, even in an end stage liver failure and Fibroscan does not show cirrhosis.
I’ts believed that this occurs infrequently but no one knows for sure. I don’t need any advice. I know everything myself. I just wanted to say that the liver is not a very simple organ and alcohol is a very dangerous substance!
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Ocean_ovna
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Thank you for sharing what you have,very very interesting. Its the same with my husband, hes got all the signs of cirrhosis and yet not been officially verbally told hes got it. His scan results came back normal,his bloods normal, that was last year and not been to the drs since ,(but hes had signs of it for many years), He has got worse the last few weeks and is showing all the symtoms of end stage liver failure.
Thank You for reading my message and it aroused your interest. I hope it can help You. I was far from thinking that I was the only patient with such problem in the World. I think such patients are actually enough, but the problem most likely lies in the "Survivorship bias" paradox known in science en.m.wikipedia.org/wiki/Sur...
I would like to add to what I wrote above. I wrote my post on the forum, as I learned from read special medical articles that in the UK there is at least one professor pathologist from Birmingham who deals with the problems of morphological diagnosis of Incomplete Septal Cirrhosis and related liver diseases. Perhaps in the future this will change the diagnostic approach to such patients.
Once again, all the best to You and Your husband, Lyn.
Hi Ocean. I was very ill for 5 years leading up to transplant. NAFLD, HCC leading to cirrhosis, TACE, 3 years daily chemo followed by liver failure and then thankfully transplant. I had Terrys Nails, and still have them to a small extent at almost one year post transplant (they are starting to grow normally now and the unsightly appearance is growing out ) They look nothing like your nails. I am not a medical expert in any way but your nails look fairly normal to me. Have you had your nails diagnosed as Terry's Nails? Regards Alf.
I thought that too Alf, Terry's Nails are described as:- Terry's nails is a physical condition in which a person's fingernails or toenails appear white with a characteristic "ground glass" appearance without any lunula. The Lunula is clearly present in the picture shown ergo not Terry's Nails.
Yes Katie, Mine have been opaque for years. you couldn't see through them at all, hence not being able to see a lunula even if it was present. It started growing out about 4 months or so ago but it's still a case of half and half. Alf
Terry nails are not used in medicine as a diagnostic criterion. But their presence in the patient can help the doctor in the subsequent diagnostic search. Terry's nails are not necessarily white nails. According to Holzberg's specifications in 1974, they can be pale pink, with or without a lunula, on the top of the nail there is a strip from 0.5 to 3 mm brown, light brown or pink. Once again, doctors do not now diagnose terry nails but can use them as "tips". Take a look here are a lot of nice pictures fordevr.com/terry-nails-pic...
Hi Ocean. Thank you for the good luck wish I've looked at all the pictures and in all honesty I still can't really see why you think that you have Terrys Nails. The people with perfect nails (especially toe nails) are in a very low percentage. I have seen a lot of imperfect nails as a friend of my wife and I is a beautician and she paints peoples nails. Often having to build up damaged nails before they are lacquered. She does before and after photo's to show other customers her expertise. If you were to put the picture of your toe nails amongst these photos then I would pick your your nails out as being in the normal range. Nothing would stand out to make me think that you might have Terry's nails. I think that you are worrying yourself unnecessarily over your toe nails. All the best with everything. Alf
I don’t worry about nails at all, obviously you inattentively read my post. I have a confirmed biopsy result and this is more important information in my opinion.
I think the gold standard for a diagnosis of liver cirrhosis is definitely a liver biopsy with more than one sample!
As you rightly said there is an underlying cause of your portal hypertension that caused your stage 1 varacies but maybe not related to any significant liver damage!
Could be some other medical conditions that caused your portal hypertension.
Hi Ocean. Yes I've read your posts but cannot comment on the other aspects of your health. I just thought that as a sufferer of Terry's Nails that I just might put your mind at rest on that point. I hope that the other health problems improve for you. Alf
Ocean that’s not really a very polite thing to say to Alf. Seriously. I think maybe check Alf’s comments (and his past history) before making statements like that, please?
I did not want to make any impolite statements for Alf. I'm sorry if that looked like that. Maybe some English phrases I don’t know enoughm. I respect his opinion and his hystory. At the same time, I would not want the problem of "silent patients" to drown in the nails.
You jumped into the Ocean with both feet. Terry's nails or not. Lol.
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I've looked at all the pictures and in all honesty I still can't really see why you think that you have Terrys Nails. The people with perfect nails (especially toe nails) are in a very low percentage. I have seen a lot of imperfect nails as a friend of my wife and I is a beautician and she paints peoples nails. Often having to build up damaged nails before they are lacquered. She does before and after photo's to show other customers her expertise. If you were to put the picture of your toe nails amongst these photos then I would pick your your nails out as being in the normal range. Nothing would stand out to make me think that you might have Terry's nails. I think that you are worrying yourself unnecessarily over your toe nails. All the best with everything. Alf
Answers at last and amazing good news!
How fast can f2 fibrosis progress f4 cirrhosis?
Compensated Cirrhosis Fibroscan
Liver Cirrhosis
