Author Topic: Question about iron (Read 22493 times)

markl · « **on:** January 12, 2015, 06:58:42 pm »

Hello, I'm new here and was diagnosed HCV last month.

After some online research, I ordered the UltraNourish Liver shake formula, along with changing my diet to low salt and sugar, drinking lots of water, no alcohol.

Because of dental issues, I'm unable to chew a lot of food types very well, and wanted a vegetarian/high protein shake. After reading more, I found that it has 5mg iron/29% DV. Is this too much iron? I could tell a big difference in my energy level after a week or so. I've been reading that multivitamins with no iron are recommended.

I'm 54 male, DX HCV/Cirrhosis and had no clue till I started getting uncomfortable abdominal swelling. Jan 8 I saw the Gastroenterologist, about a month since DX from PCP. I'd had a CT and Echo done, the GE told me that it indicated cirrhosis, and that his "gut feeling" was that I would need a liver transplant sooner or later. He took blood for HCV genotyping and MELD tests, which I haven't heard back from. Scheduled an MRI and endoscopy scheduled for next week.

He told me to use a strict 2G sodium diet, which I've followed religously, and PX lasix and spironolactone. I'd already lost 10 lbs or so before my appt, and felt much better with more energy.

It was a shock that this could be so advanced with no other symptoms. I knew I'd put on weight, mostly gut but had never had the tight balloon feeling. I know I was less active, fatigued more easily since the past year or so which I attributed to age, stress, and poor diet. I've had occasional muscle cramps, which I've had since I was a teenager usually in toes or fingers - I have some degree of carpal tunnel which I never had treated. Some lower calf cramps, after heavy sweating from working outside.

Thanks for the info I've received here.

lporterrn · « **Reply #1 on:** January 18, 2015, 01:31:25 pm »

Hi Mark,
Sorry this reply is late - I just saw this post. Because you have cirrhosis, you may have different iron needs than the average hep C pt, so the best place to get this answered is through your doc. They should be testing your iron levels and have ruled out hemochromatosis, a common iron storage disease that causes liver damage. They may also tell you you need more iron since hemoglobin levels can be affected by cirrhosis - in short, there is no one answer that fits everyone. However, in general, the average hep C patient can tolerate that amount of iron.

BattleTheBeast · « **Reply #2 on:** January 18, 2015, 06:52:10 pm »

Hi markl,

Welcome, glad you are here with the Hep C warriors

I saw you mentioned you are having some dental issues and I have had them for years especially gum issues so I started Oil Pulling a while back.

Oil Pulling is actually swishing an oil in your mouth for 20 minutes. There is no pulling involved. I used Organic Food Grade Coconut oil and I started with about a teaspoon. It's a little weird at first but once the oil melts it's like swishing anything. It pulls bacteria from your mouth, helps with bad breath, whitens teeth and many more benefits http://draxe.com/oil-pulling-coconut-oil/. It's important that when your 20 minutes is up you spit into a garbage bin not the sink because it's oil and will potentially clog up your pipes. After you spit it out, rinse your mouth out really well and you can even swish some warm salt water. Then brush like normal. I know it may sound like a ton of work but it really isn't, just do it when you are going to sit down and be on the computer or watch TV, try not to swish longer than 20 minutes because you don't want all that bacteria you collected to stay in your mouth any longer than necessary.

It's not expensive but the benefits really are amazing and it's been around for a long long time. I use Nature's Way Organic and it's not too expensive, worst case if you can't stand doing the swishing you can use it for cooking or as a skin moisturizer

. My dentist even commented how much better my teeth and gums are looking and asked me what I am doing different.

Hope you get some decent news back from your doctor. I found out like you did, out of nowhere I got sick, dizzy, was a total mess, they thought it was my thyroid and was shocked when they figured out it was Hep C. Immediately I was sent to an Infectious Disease Doctor and had all the tests done, MRI, Ultrasound, Many Blood Tests as well as the FibroSure blood test. I had F4 (Cirrhosis) and a VL of 8.3 Million. I didn't have to get an endoscopy. I would make sure you are really happy with the Gastro, I certainly wouldn't be happy to have a doctor tell me without any back up testing that he had a "gut" feeling I would need a transplant, that's so not OK in my book. Don't let this guy scare you into anything and make sure you are totally on board with his treatment plan. 2nd Opinions are a good thing when it's something this serious.

Wait until you get on treatment and become undetected and all of the sudden you will realize just how "down" Hep C had you without you even realizing it.

Let us know how it's going and we are always here to support you and each other.

Mel

markl · « **Reply #3 on:** January 18, 2015, 06:54:24 pm »

Thanks for the replies, I wish I knew more from doc. Still waiting on results of genotype, MELD, have EGD & MRI scheduled next week. There's not much choice in my area for PPO, but the doc and clinic did the FDA trials for all the new Gilead treatments - he was confident about curing the HepC.

What is scary is he said I looked malnourished, and I can see some muscle loss in my face. I first found out after testing pos for Hep C Nov from my PCP, and had Ultrasound and CTI. I've lost 40 lbs since then, first switching to a mostly vegetarian diet and drinking only water and vegetable/protein shakes made with almond milk. Prior to this I had a horrible diet, mostly junk food and snacks, beer which I'd already tapered off and wasn't hard to quit completely. The gastro prescribed lasix and spironaolactone, which accelerated the fluid loss of the ascites. He also said low sodium, no more than 2g/day which I've followed religiously.

As for dental problems, it's mainly that I have hardly any left due to genetics and Tetracycline for ear infection as a child. I'd been planning to get some implant attached dentures, which is on the back burner now.

BattleTheBeast · « **Reply #4 on:** January 18, 2015, 07:29:56 pm »

Quote from: markl on January 18, 2015, 06:54:24 pm

Thanks for the reply, I wish I knew more from doc. Still waiting on results of genotype, MELD, have EGD & MRI scheduled next week.

Hey Mark,

Do you have a copy of the blood work results? If not, call them and tell them you are coming by to get a copy. They are your results and you should have a copy. I get mine from my doctor when I visit but I also get them online from LabCorp normally less than a week after a test. That will tell you most of that information.

I am not sure why he is having you do the endo before treatment if you aren't having issues, what's his reason for doing that test? I am a little bit concerned that this guy is more about pushing procedures but I could be way off base.

Some of the people on the forum are really happy with using their Gastro but I preferred going to a Infectious Disease Doctor (ID) because that's all they deal with is Infectious Diseases like Hep C so they focus on that. There's also a Hepatologist which is a Liver, Pancreas, GallBladder Specialist.

Mel

Lynn K · « **Reply #5 on:** January 18, 2015, 09:03:39 pm »

Mel
For a patient with cirrhosis and especially as it sounds like he hasn't had an endoscopy prior plus with ascities and muscle waiting symptoms he may have advanced cirrhosis so checking for the presence of enlarged varicies and if necessary treating them would be prudent for him. Enlarged varicies especially with red wale marks could indicate the danger of a potentially life threatening bleeding incident.

Grade 3 varicies have no symptoms until you have a bleed. So it is not just to run up a bill.

Patients with cirrhosis especially those need to be monitored by a hepatologist associated with a liver transplant hospital. We are not just fighting hep c but the advanced liver disease cirrhosis.

BattleTheBeast · « **Reply #6 on:** January 18, 2015, 09:29:04 pm »

Hi Lynn,

I do understand all of that, I have cirrhosis as well.

I personally think there should be a certain order to things, like knowing what your Blood Test results as well as other results before scheduling additional procedures.

I also don't think it's ok to throw out gut feelings about transplants to a patient just diagnosed without test results to back it up

Mel

Lynn K · « **Reply #7 on:** January 18, 2015, 09:40:51 pm »

I was not trying to say he needs a transplant his doc did which does kinda bother me is that what you ment?

The best advice I had was to move from my Gastro to a heatogist associated with a transplant center. Not to get on the transplant list at my stage but to be on their radar for one if I do need a transplant ever and more importantly they are best equipped for tracking a patient with liver disease.

His mention of muscle wasting was co cerning for me plus the ascities as that could be but I am not a doctor a sign of later stage cirrhosis so if I were a doctor I would thing a full work up would be prudent but yeah that remark about a transplant in his future seemed odd

BattleTheBeast · « **Reply #8 on:** January 18, 2015, 10:08:43 pm »

Yes, it really bothered me that a doctor would say that to him especially before he even had any test results come back. Then he said he looks malnourished? Wow, I would have been hysterical when I left his office, sheesh!

He mentioned he had lost 40 pounds since November by changing his diet and it made me think of Alton Brown from the food network. He dropped a ton of weight really fast and his face looked like a skeleton for a while. I know for me when I lose weight it's my face first. I sure wish it was my butt first!

It's all good, as long as he is happy with his Doctor and his treatment that's all the matters.

Mel

markl · « **Reply #9 on:** January 19, 2015, 03:30:13 pm »

An update, I dropped the lasix and spiro today. I think that it was too much in light of my better diet already working. I started in Nov after testing positive, eating much better and drinking lots of water. Within a week or so the pressure discomfort from ascites in abdomen was gone, although I still had a lot of fluid.

I was having severe leg, toes and hand cramps occasionally, after getting more into healthy foods these had pretty much stopped. After the lasix and spiro for a week and a half, I started having cramps again last night, after a pretty active day yesterday. I've been averaging intake of 1500mg of sodium or less per day, and I think the combo with the drugs was too much.

I'm hovering between 160 - 165 which should be an ideal weight for me at 5'10" doing daily cardio which I'm slowly increasing. I look pretty skinny with a small pot belly centered around my naval, which feels like fat to me. I hope the "burn fat/build muscle" will kick in. I used to workout in the gym several years back, and I had no problem losing weight and toning up.

Thanks again for all your replies,

markl

BattleTheBeast · « **Reply #10 on:** January 19, 2015, 05:00:29 pm »

Hi Mark,

Cramps could be a potassium thing too, your blood work should show if you have a potassium issue.

I have been really careful to follow the doctor's orders with medication and not just start or stop anything. Perhaps you can give the office a call and make sure it's ok to stop the meds. Don't want anything to happen to you.

Mel

markl · « **Reply #11 on:** January 19, 2015, 09:16:33 pm »

Quote from: BattleTheBeast on January 19, 2015, 05:00:29 pm

Hi Mark,

Cramps could be a potassium thing too, your blood work should show if you have a potassium issue.

I have been really careful to follow the doctor's orders with medication and not just start or stop anything. Perhaps you can give the office a call and make sure it's ok to stop the meds. Don't want anything to happen to you.

Mel

It was keeping me up at night, no matter if I took it in the am or pm. During the day, I don't need to urinate too often, and the color is good. At night, it was every 1 - 2 hours, larger amount and urine mostly clear. I'm staying on very low sodium intake, average 1500mg or less. I'm weighing daily, and will will watch for any gain or fluid retention.

In general, I feel better than I have in many years. I'm working hard to balance diet with proteins, veggies, a little fruit and yogurt for snack. I drink plenty of water with fresh squeezed lemon juice, and just got a juicer for vege drinks.

Thanks,

Mark

Lynn K · « **Reply #12 on:** January 20, 2015, 12:37:20 am »

I get horrible legs cramps for the last couple of years I have read that can be a symptom of cirrhosis ar maybe I am on diuretics Spironolactone for my edema and small amount of ascities I think that can also cause leg cramps.

I see you were taking spiro but stopped like Mel said you should check with your doctor about that. Why were you on spiro?. I have tried to stop a few times but my feet and lower legs blow up like balloons uncomfortably so making it difficult to bend my knees.

I have noticed since I started Harvoni I have had much fewer leg cramps than before treatment and they are much less severe.

Good luck

markl · « **Reply #13 on:** January 20, 2015, 04:36:46 pm »

Prescribed for ascites. I've dropped 45 lbs since November, about 20 lbs prior to getting the spiro/lasix from healthier diet. 25 lbs since starting the water pills on Jan 8. I'm 5'10" male, have gone from 205 lbs to 160. I started taking the pills again this morning, will see how it goes.

Quote from: Lynn K on January 20, 2015, 12:37:20 am

I get horrible legs cramps for the last couple of years I have read that can be a symptom of cirrhosis ar maybe I am on diuretics Spironolactone for my edema and small amount of ascities I think that can also cause leg cramps.

I see you were taking spiro but stopped like Mel said you should check with your doctor about that. Why were you on spiro?. I have tried to stop a few times but my feet and lower legs blow up like balloons uncomfortably so making it difficult to bend my knees.

I have noticed since I started Harvoni I have had much fewer leg cramps than before treatment and they are much less severe.

Good luck

markl · « **Reply #14 on:** January 24, 2015, 11:29:48 am »

I had the EGD yesterday, with these results:

LA Grade B reflux esophagitis
Grade II esophageal varices
Portal hypertensive gastropathy
Normal examined dudenum.

The GI was much nicer this time, and impressed with my fluid/weight loss. We had little time to talk in pre-op. I have requested copies of my other test results to be mailed to me, I know they've done MELD, genotype and a new viral count.

BattleTheBeast · « **Reply #15 on:** January 24, 2015, 11:48:08 am »

Hi Mark,

Sounds like the test went well and your Doctor was much more cooperative. Perhaps you caught him on a bad day before. Glad you asked for everything, you paid for it and it's yours

Results don't sound like they are ideal but they could be worse, hopefully with the right treatments and getting rid of the Hep C it will help. They are all related to the Cirrhosis.

Hopefully, the next step is that you can start your treatment and begin to rise from the fog we have all lived in for so many years.

Keep up the great work advocating for yourself! Learn as much as you can about anything the doctor says, knowledge will give you the power to handle all of it.

Mel

markl · « **Reply #16 on:** January 24, 2015, 09:45:51 pm »

Thanks Mel. To my knowledge, I've never had any bleeding episode, or blood in feces or urine. From what I've read, if it's stable after 2 years chance of bleeding is unlikely. Doc has scheduled another EGD in 1 year.

Lynn K · « **Reply #17 on:** January 24, 2015, 10:50:51 pm »

My first EGD was grade 1 so we checked again after 2 years. Grade 2. Checked again in a year Grade 3 so I had to have 4 sessions of banding. Now I am checked every year. I thankfully have never had a bleed.

markl · « **Reply #18 on:** January 25, 2015, 11:23:36 am »

Thank you Lynn, good to know I'm not alone. Are there any tips on diet you can share, I've run across a few things online about tomatoes, orange juice, spicy food....on no salt diet I've been using spices for flavor.

Lynn K · « **Reply #19 on:** January 25, 2015, 04:35:52 pm »

All I know is I have heard that what is called a heart smart diet could also be considered a liver smart diet.

I don't follow any special diet and am actually an example of what not to eat. You could ask about getting a referral to a dietician as you have cirrhosis. I don't believe blood in urine is a problem to us think that would be kidney disease. Our problem with cirrhosis is more of a gastrointestinal bleed. So if you are throwing up coffee grounds or black tarry stools that is a medical emergency. My upper endo is scheduled for 2/13 Friday. Hopefully the results will be boring no enlarged varicies.

BubbaT · « **Reply #20 on:** March 07, 2015, 12:10:39 am »

Hi everybody, mind if I jump in here?

Lynn what is banding? And why is it necessary?

And why is sodium so bad for people with cirrhosis ?

Lynn K · « **Reply #21 on:** March 07, 2015, 01:08:24 am »

Banding

Because of my cirrhosis and the scarring of my liver this causes pressure to develop in the portal vein the primary blood vessel passing through the liver. This is called portal hypertension. As a result of this portal hypertension it can cause the blood vessels up stream in the esophagus to enlarge dangerously. This is seen on upper endoscopy. Four years after being diaognosed with cirrhosis I was found to have grade 3 varicies which could burst and I could bleed to death. So I had repeated banding procedures performed they put small bands around the enlarged blood vessels which causes the tissue to die closing off the blood vessels. The can only do so many at one time so I had to repeat a total of 4 times to get them all. Have you ever heard of banding hemorrhoids? Kinda like that.

People with cirrhosis can also develop what is call ascities having a lot of fluid in the abdomen it can get so bad the person will look pregnant. This fluid can make breathing and eating difficult due to the pressure from the fluid. Also this fluid can become infected called SBP Spontaneous bacterial peritonitis. Salt can contribute to the development of this fluid so the first line of defense is salt restriction. I have a small amount of ascities and also lower leg swellng called edema this is also due to my cirrhosis. I take a duieretic call Spironolactone to treat this fluid retention.

Basically cirrhosis is not a good thing and something you don't want to have.

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