New with NASH: Recently diagnosed thru... - Living with Fatty...

Living with Fatty Liver and NASH
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New with NASH

Tootser
Tootser

Recently diagnosed thru fibrosure-NASH test and CT scan with Stage 3 fatty liver disease with very enlarged liver and sleen, major blood vessels in area enlarged and lymph nodes around liver enlarged. Had been experiencing what I thought to be IBS sx's for past 3 months---lots of gas, bloating, diarrhea after just about everything I eat. Lost 20 lbs during this time. When I went in to my doc, my HgbA1C was a whopping 8.0, when previously I was considered pre-diabetic at 6.6 and am not on any meds for diabetes So, in all reality, I am very sick, I have felt the fatigue, low-grade fever and now recently L upper quadrant pain/ fullness which extends around to my mid back.

My question is, how come it still takes 4-6 wks to get to see a GI Doc when I have been referred by my primary care doc to see a specialist?

I am concerned what damage the elevated HgbA1c is doing (have blurred vision already) and what the effects of a very enlarged spleen area. I am being very cautious to avoid any type of infections.

Did you have to wait so long to see a GI Doc too? I am just freaking out that this diagnosis is really doing damage to my body while I have to wait so long for an appt!

I can honestly say I have learned more about NASH just by skimming the Internet than anything else so far!

Need your help...SOON!

Thanks in advance,

Tootser61

9 Replies
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nash2
nash2Administrator

You should try to get a referral to a hepatologist as most gastro docs are not well trained in liver disease. There are few treatments so diet is likely to be your best bet. Here is a link that might help you get started fattyliverfoundation.org/na...

Tootser
Tootser
in reply to nash2

Thank you, I just made an appt with a hepatologist.

Skip the GI and get yourself a hepatologist preferably connected to a transplant center. Not that you will need it..but with those symptoms I wouldn't mess around.

Tootser
Tootser
in reply to rebel5009

Thank you, I did just that, have an appt with hepatologist scheduled but it's a month out, finding it hard to deal with the pain from my enlarged spleen. Did you have symptoms of irritable bowel with your liver problem? I do, so I'm uncomfortable from the loose stools even with following the NASH diet guidelines. Just feel miserable and the fatigue doesn't help!

rebel5009
rebel5009
in reply to Tootser

Yes Irratible Bowel Syndrome for yrs. before. Once I started the meds it all but disappeared..Not sure which one did it but I take Rifaximin and Omeprazole along with diuretics and Propanalol.

But...my guess is that it is the beloved Lactalose..which regulates BMs and prevents HE (hepatic enchepalopathy)from getting worse. Don't worry if you don't get all this yet...you will..

Go to MayoClinic.com and start researching. Be prepared for your hep appt. and make lists so you won't forget to ask.

Good Luck and let us know how you are doing.

There are tons of good people out here to help. Never be afraid to ask anything...I am here to share what I know to help you.

Tootser
Tootser
in reply to rebel5009

Thank you for your help. I have been doing lots of research on the Web to gain as much possible knowledge prior to seeing the hepatologist. Also requested a referral from my primary care doc for a consult with a dietician. I am seeing her the day prior to the hepatologist.

Cats2018
Cats2018
in reply to Tootser

Yes, I had IBS for 3 years prior to diagnosis of NASH in May 2018. I’ve also had the extreme fatigue. Glad you have an appt with a hepatologist. My Gastroenterologist actually is the one who referred me to a hepatologist for a FibroScan & now I remain under the care of the hepatologist. Good luck

Tootser
Tootser
in reply to Cats2018

Thanks for the info!

The excessive burden on the healthcare systems is one of the readons for the long wait fir appointments. Unfortunately, this situation is set to get worse. You are very lucky to have had all the right investigations. I didn’t get any of them prior to seeing a consultant ... in my case an Endocrinologist.

During that waiting period, I chose to change my diet to reduce sugar and carbohydrates. I also increased my exercise plan and started to feel better after a few weeks. The liver is an amazing organ and will regenerate given half a chance, good luck.

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