NolronCO,

I think most of us on here would tell you that we were all scared and uneasy with our initial diagnosis. I can appreciate and respect your concern. While I recognize my levels were not at the same levels as yours, if it's any consolation after each phlebotomy I feel like years are being added onto my life! Hang in there and get started on your treatment plan. It gets better! There are a lot of great testimonials on this website that should put your mind some what at ease. Lots of success stories!

Thank you.

I just wanted to let you know that I'll be sending positive thoughts your way as you face your initial appointments next week. You are fortunate to have caught it now and hopefully things continue to improve from this day forward. Best wishes!

Thanks again. Regardless, It's better to deal with this now than have ignored it for another 5 yrs..

How did your tests go? Have you started your treatment? Best wishes!

Not too bad. My Hemotologist doesn't seem too worried about liver damage because I have NO symptoms and I'm 45 instead of 60. (no joint pain, arthritis discoloration, etc.) Also, I had a good USound in June.
I will be doing weekly phlebs. She thinks an MRI to check Iron values would be more appropriate than the liver biopsy. The GI and Hemo doc. know each other and she said she'd discuss with him and they'd get back to me. I haven't heard anything this week from either.

Did my first pleb yesterday in 6min 45 sec. No issues. The reality is, no matter what the state of my liver, the only thing I can do now is the Pleb's. So, that is what I'm going to do.

That all sounds pretty promising! I am a 35 year old female which I think also was to my advantage at diagnosis-caught it while I'm still "young" I had joint pains and a multitude of other symptoms. I felt just awful and was convinced there was something seriously wrong with my body. I know this sounds a bit dramatic, but I seriously did start to wonder if I was dying because there were so many things that just didn't feel right. I was relieved when I was diagnosed and found out what my treatment was. I'm envious of your phlebotomy success, but I am also SO happy for you! Mine don't go quite so fast nor smoothly and sometimes afterwards, they knock me on my ass and I'm completely wiped out of energy. I've found so far that working out on a regular basis helps ease my worries when I go to get a phlebotomy. I don't work out on the days before, the day of, or the day after though. Any phlebotomy tips you want to share? Best wishes on the MRI! Glad things are looking up for you!

Thanks again. Just did another phlebotomy today. Dr.s are talking to decide biopsy vs. MRI. Just keep taking it a day at a time. Sorry to hear the phlebotomies are tough for you. I'm just happy to be doing something proactive.

Hi NoIronCO,

I was thinking of the issue with your liver and possible biopsy option.

My HH was diagnosed following an ultrasound on my gallbladder, following a suspected gallstone problem. The ultrasound picked up darkening on my liver and I was sent for blood tests and subsequently a genetic test for HH

The blood tests picked up raised ALT levels although there was concern to reduce them, they were not worryingly high. The ALT readings have gradually reduced over the 15 months since I started treatment so problems with my liver no longer a concern and the gastroenterology consultant has discharged me from that department.

I was not offered a biopsy because it is invasive and the ALT levels were not sufficiently high for there to be a concern about fibrosis of the liver (which precedes cirrhosis).

I hope your ALT levels do not indicate fibrosis or cirrhosis and you don't have to have invasive investigations to establish this.

Christine

I had the liver biopsy today. Not something I'd like to do again, but it wasn't terrible. Now I wait. As far as the enzymes go, they have been normal every year until about 6 Mos ago. I did have a normal ultrasound in June, and only the ALT enzyme was elevated (67,40 normal then 55). Ferritin was pretty high (2281), which is probably why the GI doc wanted to do the biopsy. Hemotologist didn't think it was necessary, but had to refer to the GI docs recommendation to establish a condition "baseline". Praying for good news. Thanks.

NoIronCO,

I've been thinking about you and hoping it was going smoothly for you. I haven't had to have a liver biopsy so far. I hope yours went well. The bright side is hopefully it's behind you now and your results are promising. Whatever they may be, at least you will know the details and will be able to treat it from here. My liver enzymes were rather high themselves when initially diagnosed. For me the culprit was two prescription medications I was on that turns out weren't a "need". My hematologist took me off of pretty much everything including birth control, and advised me to use ibuprofen and Tylenol sparingly because he said they are actually kind of hard on your liver. I saw a saying the other day that helps me in situations like this, it said "Anytime you find the humor in a difficult situation, you win". Maybe this will help ease your mind...

Best wishes,
Laughalittle

Thanks.. It is interesting how everyone seems to present differently with this disease with varying degrees of damage or no damage. Yes humor will help! I sort of compare this to something like diabetes, which is very treatable but could have complications. Still no word on my biopsy, but I'm hoping that since only my ALT was elevated and was only just out of range, any damage is minimal. If you (or anyone else) wants the straight story on the biopsy, I'm happy to give you a play-by-play. The worst part was all of the pre and post prep/waiting.

After a stressful week waiting, my biopsy results came back today. No Fibrosis or Cirrhosis, just some inflammation and minor fatty liver spots. (probably not unusual for a 45 yr old)

I feel very blessed! Also did phelbotomy #6 today.

Waiting for results was WAY worse than doing the biopsy. Good luck with your treatments!

That's GREAT news!!! I'm very happy for you! Hopefully that helps put your mind at ease some. I completely agree with you-we could be dealing with something much worse and is manageable. Are your numbers responding to the phlebotomies? Mine aren't now. I've had 2-3 since my previous labs, just got new labs and my numbers are up. Could always be worse! Congrats again on the great news!

Fortunately, they are for now. As of about 2 weeks ago I was at 1000 (vs. 2100 at diagnosis) after 4 phelbs. Hoping now since I've done 2 more I am under the "danger zone". I have seen on here that they don't always go down incrementally, and will bounce around a bit. Also, I think the lower your numbers go, the harder it is to shed the last amounts. Seems a lot like losing weight! The last pounds are the hardest.