HELp so many other health issues I put this site on the back burner

[faithsr]

I was diagnosed with hep c in the 90's after a blood transfusion in 1980, up and down roller coaster, never did tx due to 1a variant geneotype. My virul loads were never horrible and I lived semi normal life mostly fatigue. About 2006 I had been extremely ill and was diagnosed with hereditary hemochromatosis, I was adopted at birth so no family history. Saw a hemotologist ended up being bled out after phebotomies for 4 wks. to trick my organs into releasing some of the iron stored in the organs which was literally poisoning me to almost death. Finally had 2 yrs. of feeling pretty good, then here comes problems again. Blood pressure goes up in Dec. 2011, I had been having subtle symptoms since fall, falling and very trembly. Jan. went to my original internist my sodium was 126 and my potassium ws really high blood pressure would stabilize for about a wk. then go up again. He's got the bp under control after doubling med and adding one, took me off aldactone which I had been on for about 16 yrs. due to a huge amount of water rention. In about 3 months I went from 135 to 180, this was about 15-16 yrs. ago it took 2 yrs. to get this off. Everything was going along until the iron overload completely out of control. Now the ferritin seems to be stable, but the roller coaster with the sodim and potassium has been horrible. I had lost 10 lbs. and was so disoriented I have not driven the 35 miles to my Dr. in 4 months until about 2 wks. ago. I'm finally feeling better but now after being taken off the aldactone for about 3-4 months I'm feeling like the pillsbury dough boy. In the last 6-8 wks. I have begun swelling, the last month it's terrible, I see my Dr. Tues. he's never given me an accurate diagnosis as of yet for the reason of this issue, just blood work every 2 wks. I don't know if he's still eliminating maybes or what but I will definitely ask Tues. Any input on this would be appreciated. What is new in Hep C tx, since I'm 1a I've been very hesitant to go through with Tx due to having so many other health issues. He did mention a new protocol and I don't know what it is and how effective it is on 1a genotype. PLEASE HELP anyone that this makes any since to. As of now my I'm clueless.

[jules2551]

Hi and welcome to the club!  I too have hemacromatosis and have been doing phlebotomies also.  You have to get your iron down in order for tx to be successful.   Otherwise you will relapse.  So talk to your Dr and get this under control.  Also have you had your Ferritin checked?  Mine was through the roof so you might want to ask him about it.  

Have a great day!
Jules

[ceanothus]

I don't have much to add to Hector's excellent reply, but since you are new here and don't have the background on the forum members I just wanted to assure you that Hector really knows what he is talking about. None of us on the forum are doctors, but we do have some members who are very knowledgeable, and Hector is one of them.

The one thing I will add is that yes, there are new treatments available, with protease inhibitors added to the interferon and ribavirin, and the success rates are now quite good even for genotype 1A. However, you really do need to have a good team going over all of your problems before deciding when to treat and what needs to be taken care of first   Good luck, and keep us posted

[HectorSF]

I am glad that you realize you are not getting the medical help you need. That is the first step in making a positive change.

You don't mention why you have water retention. Do you know? Do you have kidney or heart issues?

First and foremost you need to see a doctor who is qualified to treat your hemochromatosis.  Not properly managed hemochromatosis can lead to serious liver disease, heart disease, arthritis, and diabetes.

The best doctor for you to see is a hepatologist at a liver transplant center near you. They specialize in liver disease. Electrolytes are a common issue that hepatologist are experienced in, as patients with cirrhosis of the liver that they treat need diuretics to manage fluid retention. Should they need further expertise they can always consult with other doctors depending of the cause of your electrolyte balance issues. For example if your have kidney or heart problems that is causing your water retention. They work in teams so they can best manage all the issues a patient may have.

Sodium and potassium balance requires the proper use of diuretics. It seems your current doctor does not have the knowledge or experience to do this. Improper dosing of diuretics can cause falling and trembling, as you mentioned. Although many people think that "water pills" are safe drugs they are very powerful and can really cause problems. High sodium levels can also cause dizziness when you stand up or change positions, severe sweating or fever; vomiting and diarrhea. High level of potassium can cause nausea, a slow, weak, or irregular pulse or even cause you to collapse, when your heartbeat gets too slow or even stops. So an electrolyte imbalance is a very dangerous thing and needs to be managed properly.

I have cirrhosis of the liver and have been taking diuretics for 3-4 years and at first has some of these issues before find the right combination of 2 diuretics. I take Lasix and Spironolactone.

"he's never given me an accurate diagnosis as of yet for the reason of this issue, just blood work every 2 wks. I don't know if he's still eliminating maybes or what"
Please get a referral to the transplant center have your doctor tell them you have hemochromatosis and they will accept you. There you will find the help you need.

Please get some medical help now before more damage is done.

Hope this helps...
Good luck!

Hector