Terrified and confused and don't know where to turn!!

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scared37
New Member


Date Joined Dec 2008
Total Posts : 13
   Posted 12/8/2008 4:27 AM (GMT -7)   
Hello, (I appeciate your patience as I have to describe my background)
 
My name is Dave and I don't know where to turn.  I am 37, am Obese for 4 years (6'4'' 280) and have Metabolic Syndrome (A1c 6.3, LDL 150, HDL 33, Trig 199, Total Chol 230. BP 125/80) since 2006.  I don't drink or smoke/use drugs.  But I eat.
 
For the past 3 years I have had Neuropathy in my left foot (just tingling), since 2006. 
 
Over the past year my symptoms have seem to have worsened as I am now having twitching everywhere, Neuropathy in both hands (tingling and pain) as well as my foot, pain in my feet when I walk etc.  I have also felt Right upper abd pain for the past 6 months and light brown stools/also dark sometimes.  It also feels as though my muscles are a bit weaker, but I can't say for sure as it isn't totally noticeable.  I also cutmyself shaving and it took 30 min for the bleeding to stop (although this could be from taking asprin everyday).
 
I had a CT Scan of the Abd in Feb 2007 (Fatty Liver, enlarged) and one in june 2008 (came back normal, but I am not sure if it said Fatty liver again).
 
The real puzzle are my liver enzymes.   I am worried about NASH or Cirrhosis but my liver function tests have been normal the past 3 years on several occasions.
 
Jan 2006 AST/ALT normal
Jan 2007 full liver tests normal (also Esoph Endoscopy, no Varicies)
Feb 2007 full liver tests normal (the month of the fatty liver)
Jan 2008 AST/ALT normal (also Esoph Endoscopy, no Varicies)
June 2008 AST/ALT normal
Sept 2008 Full liver tests, normal
 
I went to the GI in Sept of 2008 and he said he doesn't think I have NASH yet but if I don't change my ways, I could develop it.  He felt my abdomen and doesn't think I have NASH or Cirrhosis yet and doesn't want to do a Biopsy at this point.
 
My ? is (and I really appreciate your patience)
 
1. If I had Nash or Cirrhosis, wouldn't something be off with the liver tests?  I mean I know they can be normal sometimes and things can still be wrong, but everytime over 3 years on 6 tests?
2. My GI doesn't think I need a Biopsy at this point as he doesn't think I have NASH based on exam, history and liver tests.
3.  Can this much Neuropathy be caused by slight Diabetes?  Additionally, if my liver was causing this much Neuropathy, wouldn't I have some MAJOR other symptoms closer to ESLD? (The NLA told me your Neuropathy that would be caused by your liver would be in addition to some MAJOR other symptoms like Acities, Varacies, distended Abdomen etc., not just on it's own)
 
Thank you for your help!
Dave
 
 
 
 
 
 
 
 

lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 12/8/2008 5:14 AM (GMT -7)   
Dave
After 20- years of seeing Dr.s for hypertension. Being checked every 6 mo. for labs. being poked on my stomach (was never over weight 'till now'. My liver tests were always normal. Even after having my gallbladder removed.
Never had any symptoms. *till two Years ago" when I ended up in hospital with major encepalopathy. Which is still my major prob. I was finally diagnosed with cryptogenic liver disease , which is similar to NASH. Now I am told I have to have had the disease for many years to be at the point I'm at.
Sorry I can't really offer you any consolation. Except get a second opinion. I do have the neuropathy, which I am on medication for. Other than that and the lactulose for the short term memmory loss.
Read other posts . The member here have been extremelly helpful . Some one is bound to have some advice for you.

Good Luck !! Keep Posting
june

scared37
New Member


Date Joined Dec 2008
Total Posts : 13
   Posted 12/8/2008 7:54 AM (GMT -7)   

June,

Now you really have me scared.  Did you have the Neuropathy for 20 years?  If you don't mind me asking, did you have anything else? (were you a drinker, HEP C?, etc.). Do you have Diabetes?

Dave


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/9/2008 1:23 PM (GMT -7)   
Hi, Dave.  I just wanted to welcome you to the forum.  As far as I know from June's postings, she only started having encephalopathy 2 years ago.  I agree that you should probably have a 2nd opinion from a hepatologist (not a GI doc.)  While liver enzyme levels are not always an indicator of what is going on, I do think that at this point you probably do not have significant liver disease.  Get a second opinion--it's the best way to go right now, for your peace of mind.  Are you trying to watch your diet?

Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


scared37
New Member


Date Joined Dec 2008
Total Posts : 13
   Posted 12/9/2008 2:22 PM (GMT -7)   

Hi Connie,

Thanks for replying to me and the welcome.

I am so fearful and terrified right now I don't know what to do (I did go on the anxiety forum and they have been VERY helpful).  My anxiety disorder has gotten me in this mess (my drug is food).  I have always liked bad foods, but I didn't really let myself go until about 4 years ago when I became Obese. (I was 245, i am now 280).  I don't drink (although I did in college, but socially).

The fear is driving me to the straight and narrow.  I have not had a bad/large meal in 8 days, and started a workout program this morning.  I just hope it isn't too late as I have an 18 mos old daughter that needs me (I had a really bad dream last night regarding my wife and I dying and she having no one)

We do not have Heptologists in Orlando, FL believe it or not (or they are not with United Health Care) and this dr has an excellent reputation.

I did talk to a very good Dr. (Hep, liver transplant specialist, GI) on Med Help named Schiano.  He agreed that while the tests are not 100% predictive, he did agree with you regarding the fact that if I start losing weight and Excersise, my liver should be OK and that there isn't significant damage.

He did say though the only way to know for sure is through a biopsy or some Fibrosis test that I prob don't have access to.

It is just frustrating as the GI/Hep protocol for Biopsies are only if the liver enzymes are elevated due to the risks (unless there is major Cirrhosis Symptoms, Varicies, Enceph, Acities, etc). 

So here I sit in limbo hoping that the 90% figure is true (only 10% of people with Normal Enzymes have serious damage), but not knowing for sure. 

I guess it really doesn't matter as I would probably treat it(Fibrosis/Cirrhosis) with Excersise and not knowing my fate like June17 anyway.  But easier said than done. 

I guess none of us really know our fate....from 10 year olds to my 90 year old grandmother who is healthier than I.

Dave


pix
Regular Member


Date Joined Mar 2008
Total Posts : 134
   Posted 12/9/2008 7:02 PM (GMT -7)   

Dave!  Hi!  You can't really control what is happening in your liver, but you can control what is hurting your liver, which is your weight and activity level.  You mentioned a workout--are you getting help with exercising?  I am an American College of Sports Medicine personal trainer,so I might be able to answer some questions and give support.  I'm sure we aren't supposed to sell ourselves (so to speak) on a forum, so I'm just saying I might be a support as you work towards being healthy.  (I also have autoimmune hepatitis and chron's disease, so I'm not an outsider... tongue )  (and sarcoidosis, just for good measure turn )

Pix


scared37
New Member


Date Joined Dec 2008
Total Posts : 13
   Posted 12/9/2008 8:18 PM (GMT -7)   

Thank you, Pix, I really appreciate your support.  I am REALLY sorry you have all those ailments and I hope that you are able to fight them off a long time.

I am now trying to eat less animal protein (as I have been reading it can increase Ammonia levels) and I am working towards getting healthier based upon having fibrosis or worse.

I am doing a modified weight watchers (26-30pts/day, no animal protein, no refined sugars carbs

Trying to stick to whole wheat/grain carbs with high fiber, fruit and veggies. 

Starting a workout of 20min/day on treadmill 3 times per week with Weights the other three days taking one day off.  Also, I am giving myself one meal a week to eat what I want for Psych purposes.

7 years ago, I actually lost 45 pounds and got down to 190, 6'4'' and was playing basket ball everyday.  but the anxiety took over and over the past 6 years I have gotten up to 280 which is why I am here now.

I am just worried that I am losing weight too fast as I have already lost about 7 pounds in 1 week.  I only want to lose 2-3 as I have heard losing it faster can actually scar your liver more.

I am open to any other suggestions.


lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 12/10/2008 2:04 AM (GMT -7)   
Dave,

You are welcome to ask me any question, I don't mind. No I do not have hep C, nor was ever a drinker, I do not !!Yet!! have diabetis , but the posibillity is very high since out of the 9 sibilings, living , my younger brother and I are the only ones who do not have it, So I am being monitored for that as well as many other ailments. I am truly praying that you get good news. You've started off well by dieting and exercising.

My only son is you age and I pray he has his dads genetics and not mine.
MY family genetic ****.
 
     idea   Nuropathy is a more recent problem. I'm hoping it doesn't mean I have diabetis.
I went to an endocrinologist today who is doing blood work to find out is anything has
changed  .It really was not a good time to go for blood work , I had only had 2 cups of
sweetened coffee and a few sweetened breath mints. But she wanted it anyway.

Post Edited (june17) : 12/10/2008 2:33:52 AM (GMT-7)


scared37
New Member


Date Joined Dec 2008
Total Posts : 13
   Posted 12/10/2008 5:32 AM (GMT -7)   

June17,

I just sw a good Hep dr. at medhelp He thinks my liver will be OK as long as I lose weight and eat well.  He doesn't really know for sure as the liver enzyme tests are not 100% predictive, but it is better than high enzymes and also to make you feel better, people with low enzymes like yourself, have a better chance of making it and can live a longer life and can wait longer till transplant (which is why your meld score is so low).

He thinks my symtoms (Neuropathy, twitching, st memory, dry mouth, etc) may be Sdjornes (sp?)Syndrome and suggested I get tested for that and not related to my liver.  My diabetes is very low and he doesn't think the neuropathy would be caused by that as my A1C is only 6.3 and Neropathy usually strikes at 8+.

I guess this is how I would react if I had fibrosis/cirrhosis anyway (diet/excercise, etc.).  Additionally, some advice (which I am sure you already know and has scared me into dieting).  I read a story of a man at the Atlanta Liver Center who weighed 500+ pounds about your age, 57.  He went to the hospital after not feeling well for about 5-7 years with Bleeding Varicies and encelopothy (sp?).  He had all the horrors, Diabetes, Chol, Triglicerides, BP etc and his meld score was high and they were talking transplant right away.  He never drank, no hep, so was diagnosed with Cryogenic Cirrhosis due to NASH.

The reason I am telling you this, and the hope I am trying to hold on to, is that after he went to the Atlanta Clinic and lost like 200 pounds, his Meld score went way down, and he is no longer getting a liver transplant.  Additionally, all his other problems went away (diabetes, etc) and now he is just living is life.

I have read SEVERAL stories as this.  It seems to me that I suspect (and again I am not a Dr., just do much research) that your cirrhosis is due to something other than NASH/NAFLD as every single story I have read from people who have this, and all the research I have done suggests that Nash/NAFLD almost never exists without diabetes (and Diabetes for many years).  Almost never.  They are directly related. NALFD causes diabetes and diabetes increases the progressoin from NAFLD to NASH and then to cirrhosis.

If you have been thin your whole life, without diabetes, it may be something else that caused it which, when you figure it out, may help you treat it. The only time cirrhosis exists without diabetes is in cases of alcohol, hep, and other things.

Again, I am not a Dr., but I have been obsessed on the subject and have very high anxiety and have done lots and lots of research trying to figure out what I have.

I hope that helps...


pix
Regular Member


Date Joined Mar 2008
Total Posts : 134
   Posted 12/10/2008 1:16 PM (GMT -7)   

Hi, scared! 

 Your workout sounds great, especially the treadmill.  How out of breath do you get?  Do you have weights "n stuff?  Loosing 7 pounds isn't bad, much of that is water at the beginning, anyhow. How can I help?  Do you want to keep track of things with me?--weight loss, exercising?  Also, as you get more fit, (which isn't the same as loosing weight, by the way...) I can help advance the exercises so you stay challenged. 

I think that it is best to focus on positive things rather than lab results and disease signs.  When I was first diagnosed with stuff, I would research tons, and just get more and more worried.  Then a friend suggested that I do the "patient thing" and let the doctor do the "doctor thing"--that I should concentrate on health (eating well, exercise, taking good care of my mental health), and let the doctor figure out when to get labs and what medication to give. 

We here at healing well are all on your side, against the illnesses and fear.

Hang in there!

pix yeah


scared37
New Member


Date Joined Dec 2008
Total Posts : 13
   Posted 12/10/2008 4:11 PM (GMT -7)   
Thanks Pix, your words are very encouraging and I will do just that, focus on the working out and eating and let the dr do the rest.
 
You are really nice and I really appreciate your help!
 
Dave

lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 12/11/2008 2:37 AM (GMT -7)   
Dave" You really have done your research well. I do have cryptogenic liver disease. I don't always say that because no one understands what eaxactly it is . Not even the doctors, thats why it is hard to diagnose, in my opinion my liver was damaged by severel things, I a severe case of hep A when I was about 8, after my son was born I had a gallbladder infection plus infected apendix which had to be removed . Leaving me with about a 6 inch scar. Later I developed a chronic pain under my rib. Went to Dr. They had just come out with MRI at the time , so they used it and saw an area that looked suspicious. Dr. told me it was simply scar tissue caused by surgery. Said lots of people had it and I would just have to live with the pain. Then I got arthritis and started taking mega doses of tylenol for pain because pres. meds didn't work. I also had a really bad fall on my right side and broke a few ribs probably doing further damage. So this was on going for at least 20 years. That's what I think.
Dr. disagree with me and say cryptogenic is in a league of it's own sort of like NFLD or NASH. Anyway I was told I must have had it for many years to be this bad. But I never had elevated liver tests. Having hypertension since I was 28 , I was tested regularly. Never had symptoms . STill don't (thank god) except for my days of fog when I have to load up on lactulose.
I am glad your condition is not bad. Take Care. june

PS> I rarely have time to check spelling , grammer , or anything else. NO EXCUSES (((( JUST ME)))))

exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 12/11/2008 10:12 PM (GMT -7)   

Pix

I like your posts.  You could be a wealth of help for us on this forum.  Do you know what vitamin is good for stress.  I think I need it to get through this next year or two.  Also on the exercise side.  What exercise is good for that skin that flaps under your arm when I wave.  I am totally serious.  Thank you

 

JoAnn


pix
Regular Member


Date Joined Mar 2008
Total Posts : 134
   Posted 12/12/2008 11:45 AM (GMT -7)   
Hi, JoAnn.  I will be pleased to give any advice I can.  I do know about exercise, but we don't get specfic training in nutrition, so I would just be telling what I have learned if I answer a food or vitamin question. Vitamin C is good for stress because it can strengthen your immune system.  Another good stress buster is --not kidding--what I call a "mental health walk"-- just 10 or 15 minutes, go outside and look around--  in your mind, instead of worrying, planning, ruminating, just notice what you are seeing  "hmmm..clouds!  There is a tree.  Here are some flowers.  oops, a crack in the sidewalk..a house is over there."  When you start thinking about other things, gently stop yourself, and go back to just looking around.  Try it and see!!!
:-)  
 
As for the flaps, some of it is part of getting older, and some of it is a weak triceps muscle.  To tone that, go on line and get a description of a "triceps dip" and "triceps kickback".  These are great, and if you try them, I can try to answer any questions you have about them.   Push ups are good, too, and they exercise more muscles at once.
 
Pix yeah

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/12/2008 11:04 PM (GMT -7)   

Dave, I just wanted to tell you how terrific I think it is that you are seriously dieting and exercising and determined to lose weight to save your life.  You are right--your child needs you!  Seven pounds lost in a week is not a lot when you have much to lose.  Obese people lose weight rapidly in the beginning and then hit a plateau.  In my case, I just have about 10 lbs. to lose, and it's best if I do it @ no more than 2 lbs. a week.  It's not a health matter...I just feel better when I'm thin, as I'm only 5 ft.  A difference of 5 lbs. is a size on me.  But 10 lbs. is much harder to lose that 100, I swear!

There are sooo many health problems that accompany obesity, that it only makes sense to try to get it under control.  Are you taking anti-anxiety meds?  I know that antidepressants generally cause weight gain...which makes me MORE depressed, so I no longer take them. 

I hope you will continue to check in with us.  You are an inspiration.


Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 2/20/2009 1:50 AM (GMT -7)   
Dave
Good to hear you are keeping up the diet. I had hoped to start exercising to loose the 20 pd. gained . During the past few months of foot surgery. Am posting. Give me A Break.

Read you may be able to help me. june

pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 2/20/2009 4:24 AM (GMT -7)   

Dave,

 

You mentioned in a post that Orlando, FL does NOT have any hepatologists.  I wanted to correct this.

 

Florida Hospital South has a BRILLIANT Liver Transplant Team and United Healthcare does cover them. 

 

Florida Hospital Transplant Center

Suite 542 South Tower

2501 N Orange Ave

Orlando, FL 32804

Phone (407) 303-2474

Toll Free (866) 913-7851

www.fhtransplant.com

 

Trushar Patel, MD

Internal Medicine/Hepatologist

 

Should you ever require their services (and I hope you don’t), your GI or Primary Care doctor would need to send a referral to United Healthcare for approval.

 

My husband received a lifesaving liver transplant on January 21st, 2009.  This after being turned down by Shand’s hospital in Gainesville.

 

Penny

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