The doctors are stumped. We are bummed. Here we are, nearing retirement age, and all we want for Christmas is his good health back!
My husband (age 58) is not a diabetic. He is not overweight. Never has been. He has only ever been an occasional social drinker. When I say occasional I mean maybe 2 or 3 beers on the weekend if we go out to dinner with friends, but not a drinker in our house, and we don't go out with friends much. He's never been a soda or sweet-tea drinker. Not a sweets-a-holic, but did enjoy dessert after dinner a few nights per week.
About two years ago he cut out drinking and carbs unless it was from a vegetable because foods like rice, crackers, bread, beer, pasta, cereal, corn, gluten made him feel like crap. They became not worth consuming because they made him itch or have to spend too much time on the toilet the next morning.
As the doctor was questioning him about how long he's had high cholesterol, he remembered that he almost didn’t get to play high school football because his cholesterol was elevated all the way back then - 40-some years ago! Who knows how long it was elevated prior to high school because who checks their cholesterol in elementary school?
Here is where your jaw will hit the floor and you will feel so much better about YOUR numbers because, “Wow, that guy is way worse off than me!”
Fibrosis Score 0.93 = F4 Cirrhosis [ Range 0.00 - 0.21 = Normal ]
Steatosis Score 0.95 = Marked or Severe Steatosis [ Range 0.00 - 0.30 = Normal ]
NASH Score 0.50 = F4 Borderline / Probable NASH [ Range 0.00 - 0.25 = Normal ]
Bilirubin 3.4
GGT 901
ALT 276
AST 210
ALP 926
CHOLESTEROL TOTAL 635
GLUCOSE 102 (99 or less is Normal)
Everything else on this test is Normal.
He does not have Hepatitis.
Even a Calcium CT Score came back with 0,0,0. No build up or blockages.
They did a Lipid Panel breakdown and while his cholesterol is through the roof, his Triglycerides are normal. His Concentration and Particle Size were, and I quote, "The best we have EVER seen, I mean we never see numbers this good. We just don't understand it. Go see a specialist."
5 doctors later, the current doctor thinks this could be Hypercholesterolemia.
My husband still works a 40-50 hour work week in sales and management. His work requires travel by air which he still does. He mows our acre yard with a push mower. He does all of our gardening and yard maintenance. He cooks and he grocery shops because he likes to. On really perky days he even bicycles 20 miles on an old fashioned peddle bike (not an e-bike). I don’t know many healthy liver people who do as much as he does.
His biggest complaints are the itching. He itches like a _____ (rhymes with ditch), and not being able to eat an occasional carb.
Well very high LDL can be caused by some genetic issue (regardless of weight or life style). There is somethig like below. But of course is it a long shot.
"Familial hypercholesterolemia (FH) is a genetic disorder characterized by high levels of low-density lipoprotein (LDL) cholesterol in the blood. This condition is typically caused by mutations in genes involved in LDL receptor function or other genes related to cholesterol metabolism. While FH primarily affects cholesterol levels and increases the risk of cardiovascular disease, it can also have implications for liver health.
In FH, the accumulation of LDL cholesterol can lead to the formation of fatty deposits in the liver, a condition known as hepatic steatosis or non-alcoholic fatty liver disease (NAFLD). NAFLD is characterized by the build-up of fat in the liver cells, which can cause inflammation and liver damage over time. In some cases, this can progress to more severe liver conditions such as non-alcoholic steatohepatitis (NASH) and even liver fibrosis or cirrhosis.
It's important to note that not all individuals with FH will develop liver damage. The risk and progression of liver-related complications can vary among individuals based on factors such as the severity of FH, additional risk factors (e.g., obesity, diabetes), and lifestyle factors (e.g., diet, exercise). Regular monitoring of liver function, cholesterol levels, and appropriate management of FH, including lifestyle modifications and cholesterol-lowering medications, can help reduce the risk of liver damage and associated complications.
If you have FH or concerns about liver health, it is essential to work closely with a healthcare professional who can provide guidance, perform appropriate tests, and recommend an individualized treatment plan to manage FH and monitor liver health."
Hi there, thank you for taking time to reply. The doctor did mention he thought that’s what it could be. I mention that in my write-up above, but I don’t expect anyone to read all that! Doc ordered a CT Calcium Score and it was all 000. We are waiting on the blood results now. Thanks again!
Yes, it can. He was negative for that however I wonder if since he was taking supplements to clean his liver of the results of that test may be inaccurate.
His symptoms tend to fall more under Bonze Diabetes (Hemochromatosis) and he came back negative for that as well.
He seems like he lead a very healthy lifestyle . I’m not a doctor but this seems genetic to me . I would have siblings tested to see what their results are. We just lost a family member from cirrhosis because he didn’t know he had a genetic disorder that made his blood too thick and he needed frequent blood draws and he would have been fine. I don’t know where you live but Cleveland clinic is very good at figuring out complicated cases. I wish you all the best.
Thank you for replying. You may be on to something. He is the youngest of 5 and the female siblings are all fine. The eldest brother has passed away from colon cancer. Ironically the youngest son of the eldest brother who passed away just graduated High School and he has high cholesterol. Seems like it affects the youngest males of the family. My husband’s blood is not thick. His prothrombin time and INRband other numbers on that test are all normal. His body does build up Ferritin though so he has to get that drawn out regularly. All great points you made. Thank you!
My maternal grandmother had primary biliary cirrhosis...my mother and at least 1 other sister dx but I suspect out of 14 others have it ...my oldest brother ...myself as well as my youngest brother all have it ...so definitely hereditary in our case ...
I’m sure this probably has nothing to do with his illness, but when you said he itches so badly, it reminded me of myself 20 yrs ago when I itched all over and scratched myself till I bled-I had an overactive thyroid-hyperthyroidism.
I have been diagnosed as NASH, F3 Fibrosis. It is definitely hereditary in my case. My sister that is 7 years older had a liver transplant about 7 years ago. When my numbers went through roof, her liver transplant physician agreed to start seeing me. In his words, "By the time I started treating your sister, it was too late to save her liver. But we have a chance to save yours". I tell you this because I think it is critical for you that you start to work with a team that REALLY specializes in severe cases. I would try to start working with a hepatologist and with your age, even consider recommendation to a group that mainly specializes in potential transplant patients. If your condition worsens, you are young enough to be viable for a transplant.
I just visited my physician a few days ago for my 6 month checkup. He always goes through a battery of questions about potential changes/side effects in my health. One of them is severe itching, not in a specific location. I do have some dermatitis issues, but it is in a specific area so he was not worried. But yours sounds like it is possible the itching is linked to liver issues. Just remember you are your best advocate. Find the best potential team of physicians to work with and get in to see them. It can easily take 4-6 months to get an appointment. Be sure to get a contact like an MA or PA on the team to send your tests into. Confirm they receive them and review them. They might try and get you in sooner. If you can get referred through your existing doctor ask for it.
Good luck and continue to push for the best possible care you can receive.
...It took me 4 different doctors to confirm I had cirrhosis ...my Mom who has been gone for 10 ...saw her Dr for the 4th Dr ...confirmed my suspicion ...all the rest were wishy washy and sure I didn't have it ...I have no faith in Doctors ...
Others have given good advice on what this could be. I would say that your husband may benefit from drinking 3 cups of coffee a day for his liver. For his high cholesterol, some people have had luck eating oatmeal (if he can tolerate it) or red yeast rice. I know they're both carbs, so his doctor would have to agree to the diet change. By the way, you were spot on to wonder how many people with healthy livers could be as physically active as your husband. Few can. Studies have found that your ability to do strenuous aerobic exercise declines as liver disease progresses. So, the fact that he can be so active is a great sign. Chin up!😊
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
I survived the Unimaginable, therefore, I can do the Impossible
Decompensated cirrhosis of the liver 
LIVERFASt Results
Stoping NASH/ Fatty Liver before Cirrhosis.
Help me understand 
