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Liver & Pancreas Disorders Message Board
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Old 10-08-2007, 04:49 PM   #1
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chicojeff HB User
What Else To Do?

HELLO,
MY PROBLEM STARTED AROUND JULY 4TH AFTER DRINKING HEAVIER THAN USUAL. I BECAME NAUSEATED, WEAK AND DIZZY LIKE I WAS GOING TO PASS OUT. TO MAKE A LONG STORY SHORT I AM 42 YR OLD MALE, HBP FOR TWO YEARS, AND A DRINKER FOR 15 YRS. NEVER HAVE BEEN SICK A DAY IN MY LIFE. SINCE THIS SPELL I HAVE BEEN TO THE ER 5 TIMES, ALL THEY WANT TO DO IS TAKE MY INSURANCE CARD, BLOOD TEST, CHEST X-RAY, AND EKG.
ALL THEY WOULD TELL ME WAS MY LIVER ENZYMES HAD A LITTLE BUMP(ELEVATED). i DID NOTICE SOME BLACK IN MY STOOL. WENT TO GASTRO AND HE PERFORMED UPPER AND LOWER GI. I HAD ULCERS. I TOLD HIM HOW MUCH I DRANK, AND THAT I THOUGHT IT WAS MY LIVER BUT ALL HE WOULD TELL ME IS TO STAY OFF THE ALCOHOL AND EAT PLENTY OF FRUITS AND VEGETABLES. THE FEELING FAINT IS WHAT THREW ME. I HAVE HAD MRI, MRA,EEG, FROM A NEUROLOGIST. RESULTS WERE NORMAL. MY CARDIOLOGIST GAVE ME A ECORDIOGRAM, AND A NUCLEAR STRESS TEST, ARE WERE NORMAL. HOWEVER MY BLOOD PRESSURE MEDS HAVE BEEN CHANGED SINCE MY ORIGINAL ONES STARTED TO MAKE MY LEFT LEG SWELL.
I FINALLY RECIEVED A COPY OF MY BLOOD TEST FROM 4 MONTHS AGO WHEN MY SYMPTOMS FIRST STARTED. MY AST AND ALT WERE IN THE 100'S.
NOW THEY ARE DOWN TO NORMAL WITH DIRECT BILI, ALK PHOS. I WENT TO A DIFFERENT GASTRO FOR A SECOND OPINON AND HE TOOK NEW BLOOD TESTS, THE THING THAT I NEVER HAVE SEEN ON MY OTHER BLOOD TEST
THAT SHOWED UP ON THIS ONE IS FERRITIN. THE SCORE IS 489.5 THIS HAPPENED TO ME ONE OTHER TIME IN MY MANY BLOOD TEST WITH GGT 114 THE NEW DOC DID NOT CHECK GGT ON THIS TEST. I RAN BY THE DOCS OFFICE TO PICK UP THE COPY OF MY RESULTS. I DO NOT HAVE MY NEXT APPT. UNTILL THURSDAY FOR HIM TO REVEIW WITH ME. DOES ANYONE KNOW
1) HOW BAD IS MY FERRITIN SCORE.
2) HOW DO I GET IT DOWN
3) WHAT ARE THE GOOD FOODS FOR MY CONDITION.
THANK ,
CHICO JEFF

P.S. I STILL HAVE THESE SYMPTOMS AFTER 4 MONTHS WITH NO ALCOHOL.

 
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Old 10-08-2007, 06:51 PM   #2
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Stefarina HB User
Re: What Else To Do?

Hello,
First of all, I would make sure you go to any of the doctors that have run tests and request copies of all the test results, if you have not previously requested copies. It is your right to have the results. I have become vigilant about getting and keeping copies at home so I have a record and have the results to ask questions about in this type of forum or to take to a new doctor's office.

If your ferritin level was in the 480's I would suspect that you have iron overload also called, Hemochromatosis. This condition dramatically effects the liver as well.

Please update your post once you have seen your doctor and let us know what their opinion of the results may be.

Best of Luck to you,
Stefarina

 
Old 10-08-2007, 09:05 PM   #3
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FLFLOWERGIRL HB UserFLFLOWERGIRL HB UserFLFLOWERGIRL HB UserFLFLOWERGIRL HB UserFLFLOWERGIRL HB User
Re: What Else To Do?

chicojeff--My husband is 54 went to his PCP for a routine check up to make sure everything is ok. Told the doctor that he wants everything that INS pays for checked. His liver enzymes came back high don't remember how high I think it was 62? Anyway, the PCP doctor did a test for Hep-C and said that he was positive. We were floored and to say the least not pleased. He sent us to a GI doc. As soon as the doc came in the room he said this doesn't mean that you have Hep-C, we were devastated at that point and in disbelief. He checked the Ferritin and it was almost 3,000 the range is 10-291
He then tested for HH and did DNA testing, he tested positive for the double gene of HH, this makes my children automatically carriers. That is why the Ferritin is so high these stores are fully loaded with iron along with the Liver and other organs. Ultrasounds and Catscans were ordered and found normal result other than an enlarged spleen. He is now on a schedule for bloodletting once a week. It took his whole life to build the iron in the organs and it will slowly be released. This takes a long time.

Your numbers are up to the point that you would probably have to do bloodletting. After you get the Ferritin down in range, then you have to do a maintenance bloodletting maybe on a yearly basis, not sure. But your numbers are not that bad you will probably have to do maintenance the rest of your life if you have HH. You will have to have all the others tests that I mentioned as far as blood goes.

We were lucky to catch it in time. The doctor said that when the iron is out the spleen will go back to normal. Thank God that he went to the doctor or he would have died from it. The doctor said that he just had a guy ome in a week prior to us and he had to have a liver transplant. We have a son that is being tested for it right now. He has a 50% chance of having HH.

The doctor said that he is not concerned about the diet. Iron is in almost everything that we eat. He absorbs it 3X more than a normal person. I will tell you he was taking a vitamins with iron in them, along with OJ which increases the absorption rate. This is very BAD! He has discontinued that program. I just wouldn't eat red meat for a while that really ups the iron load fast. And as far as drinking say good-bye to the alcohol or to your liver and your life. You cannot drink, your liver is already overloaded with iron. Maybe that is why you got so sick iron and alcohol combo. My husband doesn't even drink, that might have killed him. I think that I've answered your questions. I have posted more about HH on the blood disorders board if your interested. Good luck with your follow-up and keep us posted. FLFLOWERGIRL

 
Old 10-09-2007, 12:27 AM   #4
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theprice HB User
Re: What Else To Do?

Black stools mean blood in stools, but ulcers can cause this. Why do General Practitioners always refer patients to Gastro Intestinal doctors for liver problems - Hepatologists are the liver specialists - SEE ONE. For all the doctors you mentioned, you have not had a liver evaluation done right yet. If one has liver disorders - from any cause - simple proteins found in fruits, vegatables, rice and especially pasta are recommended. Limit complex proteins found in red meat especially to 4oz per meal twice a day. More can turn to amonia in the blood adding to feelings of ill health.
See this web page for ferritin test info - and also search the major search engine for ferritin for other sites of information:
[url]www.labtestsonline.org/understanding/analytes/ferritin/test.html[/url]
Bloodletting sounds archaic as does a doctor that says he's not concerned about the iron in your diet - take YOUR doctor's advice instead.
Good luck and God Bless.

Last edited by theprice; 10-11-2007 at 04:06 AM.

 
Old 10-21-2007, 02:46 PM   #5
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chicojeff HB User
Re: What Else To Do?

Hello,
Thanks, everyone for the responses. Stepharina, I did go to all the doctors and hospitals to retrieve copies of all my test. I now have my own personal medical folder. Boy is it thick! Flflowergirl, I am glad to hear that your husband was able to catch the HH in time and is doing good. Theprice, blood letting may sound archaic but it is the quickest way to get your iron down.The drugs that are on the market take to much time and they are not as effective. I donated and felt almost instant relief. To much iron is not a good thing. Excruciating paint in you muscles, joints and pressure in your head. Not to mention what it does to your heart, kidneys, pancteas, gallbladder and thyroid.
On my follow up with my second Gastro on my ct and ultra sound, he took a more extensive blood test. Ferritin is still high, all others are either normal or negative. We are still waiting for the result of the HH gene.The results were all normal on my ct. The ultra sound showed a gallstone verses polyp. The doctor wanted perform another GI to see what was originally done and to check for more ulcers. I agreed and the procedure was done Friday. He said that my ulcers were all healed up however my esophagus has some irritation.
As far as the iron goes. Living in the south, we can Bar -B-Q 11 months out of the year. I was looking at my pit (smoker) yesterday and noticed the metal is flaking on the inside of the lid. Do ya'll think that the metal could have fallen onto a briskit and I could have poisioned myself and wife. She does have nausea palpitations and severe headaches. They cannot find her cause. I told her she needs to have the Dr. test her ferritin level. Iron posioning may not effect her as bad do to the fact of the menstral cycle. What's your opinon?


God Bless,
Chicojeff

 
Old 11-04-2007, 08:33 AM   #6
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Stefarina HB User
Re: What Else To Do?

ChicoJeff,
Not sure about the iron on the BBQ, but it wouldn't hurt for your wife to get her ferritin levels checked. It is such a simple test. Glad to hear you are feeling better after donating blood.

It amazes me that so many doctors do not check ferritin. I have been anemic for a year or more and the doctor's were only checking hemoglobin and hematocrit. Only because I was having some liver issues did the GI doctor order ferritin thinking mine would be very high. What a surprise to find mine is a 4!

Best of luck to you and your wife. Keep us posted on your progress.
Stefarina

 
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