My 2 1/2 year old daughter, McKinley, is one year post MUD transplant for AML. She is on Mepron and recently had a clean BMB. Today she had labs done in the clinic and we got a call right away to head back there for more labs on Monday. Has anyone else had this? Any ideas?
ALT = 878
AST = 599
LDH = 361
Any reassurance is greatly appreciated!!
Those aren't good numbers, I don't guess. The first two numbers are liver enzymes. Those numbers wouldn't be for an adult, anyway and I suspect not for children either.
I don't understand exactly what LDH is, but it seems it could indicate any number of things but that they need to do tests to diagnose what an elevated level means. I wish I understood that better.
As for reassurance, we all run into things we'd rather not during the course of treatment and recovery. That in no way indicates we're not going to come out smelling like roses. We often do.
I do know that elevated numbers can indicate a lot of things. A lot of times they just have to check further under the hood to rule out some of the less than good causes so they can move forward expecting the whole thing to clear up as recovery goes on.
Please keep us informed.
I hope this was just a blip on the radar screen and it all goes away soon. I know it's tough to avoid reading stuff into the tests, but about every time I did I was wrong. After over eight years I've decided to just let my doc tell me what it means. Maybe you can learn something from my experience?
Not being a doctor, I cannot say for sure, but these combinations of high ALT, AST, and LDH are indication of some kind of disease, it could be liver or kidney. In my own fight I've encountered several time where my numbers were not optimal at one point, then back to normal at the next check up. If this is an isolated test, I wouldn't put too much emphasis on it. Check with your doctor to see if he'd like to rerun the tests, it could be that it's worked itself out by now.
My LDH has gotten as high 800's. And even then, they continue to monitor, but nothing was done based on the blood results alone.
Best of luck, and let us know how it goes,
Well, clinic on Thursday didn't go as we hoped. McKinley's liver numbers climbed once again. So the theory is she had a virus that irritated her liver (even though all the virus labs came back negative) and Mepron (which she's been on for over a year) is further aggravating the situation. So they are re-sending the virus tests in case she picked up a different virus in the last week and stopping Mepron. She will have an ultrasound of her liver and have her levels checked again on Tuesday. If her numbers go down we wait and see, if not we schedule a liver biopsy......stay tuned.....really hoping it is as simple as just stopping the Mepron.
Her labs over the last couple of weeks....
1/6 1/9 1/19
AST 599 ...... 375 ..... 1008
ALT 878 ....... 665 ...... 797
LDH 362 ....... ??? ....... 716
On a brighter note we got the official call yesterday that McKinley's Make-A-Wish in GRANTED!!!
Thanks for checking in with us,
This is my first time posting ever, my son now19 had a MUD for AML PIF in early 2008. He's been doing well with issues GVHD etc. he has a limited range of motion in his upper body, which improved a lot through PT and Gleevec. He is no longer able to straighten out his arms, but not a big deal. Also his hair never came back, he still looks bald.
We have had elevated Liver enzymes for a long time, since June of 2011. After 2 Biopsies and Ultrasound he will be treated for autoimmune Hepatitis. The thought of having him on Inuram more than scares me, I was wondering if anyone has some feedback.
I've been living with high ALT, AST and phosphates since my SCT back in '04. At least that's how long we know they've been high. Turns out I have a minor and unrelated liver disease so we don't really know how long they've been high. We probably never would have found it without my SCT.
My numbers did go down from pretty darned high to just a little over the limits over the past years and some of that has to do with treatment I received for it. Guess I'm just writing to say we can live with somewhat elevated numbers. No one's worried much about this liver thing, though we do image it once a year just to keep track of it.
Also, the liver disease has made my spleen swell a little and that has blocked the smooth transport of my blood cells, especially my PLT and I run low PLT all the time. So, if he starts showing low PLT, that would be a place to start looking as to why.
Hello Tex and thank you for responding. His numbers have been elevated for 1.5 years...we have had 2 ultrasounds and 2 Biopsies both not showing anything conclusive. They detected a few cells for autoimmune Hepatitis and some minimal scarring, we held off on the treatment this summer. However back then his numbers were lower, in October his AST was only 160 ALT 366 and 162 TBILI 0.5
In Novemer they sky rocket to AST 581. ALT 1067. And ALK 223 TBILI 2.0. The numbers came down to 454,196 and 273.
His Ferritin was around 1700 and we we know he had a huge amount of Transfussions, but they are focused on autoimmune. He nerver had Liver issues until 3+ years after Transplant. He has some GVHD but it effects his range of motion and did the skin at one point. The range of motion was the worst and effected his upper body, that's why he was on Gleevec, but that was discontinued last in early January due to the Liver.
So the only meds he took was Synthroid .....he started Prednisone 40mg daily in mid Nov, the next med to add would be the Imuran . So my heartache is the possible side effects of Imuran.......autoimmune Hepatitis is a expected to be a life long treatment . His BMT docs haven't had another patient like him, we joke about him doing everything different, but I am beyond nervous with this treatment plan. He's doing good, going to college finally found a job and like it, living life as best he can. March will be his 5 year mark for Remission and Transplant :)...as far as his blood work it looks good PLT have been between 300 -400 for years.
You know, I'm beginning to suspect that transplant replaces really bad autoimmune issues with a whole mess of other ones which, hopefully, aren't that bad. Sometimes that's more of a judgment call (hepatitis is better than cancer, right?) My liver issue is whatever the heck it is but I have picked up Celiac disease, likely from my donor, which is autoimmune. It sucks, but there you are...we're alive when we wouldn't have been otherwise.
My phosphates spent a good time in the mid-250s. I never had ALT or AST counts anywhere near that high (November counts). Good they started trending down.
I wouldn't think that a ferritin count of 1,700 would produce much of an issue but they decided to start leeching me from 1,000 when they discovered my liver issue. So that might be something they want to address at some point. To me the bottom line would be to take a look at that liver afresh without any attempt to tie it to his transplant. My liver issue is freestanding...it would be there even if I'd never had AML/SCT.
Is he seeing a hepatologist? If not, it might be time.
I absolutely agree with sometimes replacing "issues" or as I say sometimes stopping one evil for another. Yes autoimmune Hepatitis is better than cancer, BUT the possible side effected can bring other malignancies right back.....
So this is why I struggle so much, yes we have been seeing a Hepatologist ( actually 2nd, since first was not comfortable taking on his case) at a Specialty Transplant and Liver Failure Clinic, which are supposed to be #1 in TX.
I agree that it his is probably unrelated, but we do not have a positive or conclusive Biopsy, so what if this is more than 1 issue? I do wonder about the combination of things. Overall he's done we'll in the last five years, we had our ups and downs just like everyone else. He certainly is a Miracle, he received Salvage Chemo before his Transplant and did well for what he's been through. He's already on 40 mg Prednisone to which they will add Imuran sooner or later (waiting for testing to see if his body can get rid off it) . I guess I have to see the next Bloodwork and if his counts continue downwards accept that this is it?
Sorry if I seem cavalier about being cured. Some of the stuff I'm dealing with can cause future cancers and I understand the attitudes that fact can bring. I guess I kind of look at it from a live to fight another day perspective.
I guess the biggest thing is that he has done well over the last five years. That should signal a tendency to be able to fight this stuff off. It gets old. God, it gets old. But it also makes us tough bastards that are hard to take down.
You know, I've rethought my response to the ferritin level. They were concerned about scarring at 1,000 with a active liver problem. You might want to check if they think it's a good time to do some draws to get his count down.
that is the best way to look at it for sure, luckily my son has a very upbeat attitude. While I know that he has truly come a loooooooong way and could be worse, it does get old, there is so much more you want for your children.... Anyway he has been on Prednisone for almost 4 weeks, his numbers are better, yet I'm not convinced autoimmune Hepatitis is it. We will see his Hepatologist this coming week and I will ask more questions, again.
He feels better(more energy) since taking the prednisone, but his numbers are still high. He's had different things going on in the last few years...limited mobility(not able to straighten his arms) and muscle spasms, I do believe the liver issue might be totally unrelated but also think there is more than one thing going on or causing this. He has food allergies now he hasn't had before, we met his Donor and he did not inherit it there. The reason why I am so worried about the Imuran is bc of family history on both sides. I will ask about the ferritin level. He's been fighting a cold for weeks now, not to bad really, but he just can't shake it and his suppressed Immune System does not help. I am just a Mom with a gut feeling, I know worrying doesn't help, but I guess thats what I do. Hopefully we will find some more answers, this has been going on for 1.5 years. On the other hand he has his big 5 year mark for Transplant/Remission coming up in March:)
it does get old
Lord, do I hear that. Apparently my SCT just opened the door for a lot of auto immune issues to move in. I've got to talk to my onc about that the next time I see him. Anyway, I don't know that I could recap all of the stuff that's been dx'd with me since my transplant. I'm like a walking medical book.
So, you have my absolute sympathy. It seems that blood cancer and a transplant should be enough for one lifetime but it just doesn't seem to go away for all of us, But I have lived to fight another day a number of times, so far. And I hope to be very old when I lose that ability. I hope the same for your son.
Are they resisting giving him a biopsy? I had to argue with my docs for almost two years to finally get a biopsy of my liver. They thought it was too invasive. They finally sent me to my hepatologist and she said, hell, yeah, let's get a biopsy!
About his allergies, I wonder if his donor does have allergies but has a strong system that fights them back. It might be that he can do this while your son's immune system isn't there, yet. It's not quite five years old. Whatever, you might take him to an allergist. Also, check the EOS on his next CBC and see how they're doing.
I do think your thoughts about this being more than one thing are quite possibly right. One thing I've found out is that things don't tend to happen in a vacuum. We started out trying to figure out why my PLT were low and, of course, assumed it was SCT related. That finally led us to another issue that had been dogging me, my high liver enzymes. But it was only after they'd looked at both issues individually that they were able to connect the two. It took a lot of money, a number of tests and a very long time to sort it all out.
Please keep us informed about what you find out.
I really do not have any news....we went back to his Hepatologist a month ago and are scheduled again next Friday. One thing I learned again is follow your gut!!! It turns out, that he is of course(sarcasm) one of the few, who cannot take the standard treatment for autoimmune Hepatitis. But regardless of that, his Liver enzymes were supposed to go back to the normal range and did not, therefor without the positive Biopsy and without the positive effect of Prednisone, they are weaning him of the Prednisone. So at the moment he continues to be a Mystery Diagnosis. This has been going on for 1.5+ years, we are at the 2nd Hepatologist, who said we could get another opinion...not sure where to go. We do like his Doc, they are supposed to be top notch in TX and asked her to reach out to her network, we followed up with his BMT right after and they do not have any answers either. So for now his counts are better, elevated but better....should they rise again we will go for the 3rd !!! Biopsy, but so far they have nothing.
He's doing good though, in college and working part time. Next month is the Huge 5!!!!! You know how big that step is, our Miracle has come a long way. AML M1 Primary Induction Failure with CNS Involvement, March is his Remission and Transplant Anniversary
I think it's autoimmune, but which one??? He's been testing positive for Sjogrens for years, no symptoms, just dry eyes and his ANA has been high for a long time.
One thing that he has had for at least a year is this fatigue, a lot more when his enzymes go up. His joints bother him more often, but overall he can't complain. If they come up with something new, I will let you know. I have read a lot on this board, but don't seem to find someone active with similar issues. Except you, you have your share of medical mysteries as well. Hope all is going well for you and thanks for listening.
It took over five years to figure out what was up with my liver enzymes. It could be there were a number of things early on or that one issue followed the last but we finally settled on a name for it, anyway. Knowing the name helps so much just knowing someone has seen it before, if nothing else.
I'd keep pushing for a biopsy if they won't give you one. I can't remember what part of TX you're in but, for some reason, as I was reading your note, the words Scott & White in Temple popped into my mind. That is not a clinic that I think about often but I remember my mother-in-law was having some kind of mystery issue and she went there and they got her straightened out. I think most Texans know of them but S&W is kind of the Mayo Clinic of Texas. You might check out their web site and/or give them a call. I don't know if they could help but I'd certainly ask.
At any rate, minus the occasional off day, it's good he's doing well and I'm glad to hear it. The fatigue might be a lifetime shadow that follows him around. A lot of us are slammed with it, though most young people do better.
You know, whatever else I face, I have to remember that without the transplant I'd have been dead at least five years and probably more by now. If I die today, I've had a helluva bonus. Not that I'm suggesting such a bleak approach, I'm just saying, things could always be worse. Perspective is a true gift.
Please keep us updated if only to say, "no update." And keep fighting The Man.
we go to Methodist in SA, but do have his Endo at S&W. His 1st Biopsy was ordered by the BMT at Methodist, after the numbers kept going up and down they wanted us to go see a Hepatologist. We started out at S&W (which is closer), however that Doctor was very nice, but not comfortable or experienced enough for his case (her words). So we went with our BMT's suggestion to see someone in SA at there Specialty Transplant Hospital (Liver/Kidney) and had Biopsy #2 last summer. At our last appt his numbers were improved but they are already climbing again, we had labs done last week....
So we now have seen a total of 4 Hepatologist, 3 out of the #1 rated Texas Hospital. At our last visit in the beginning of March we were told that he is a medical Phenomenon....this doc spend 2+ hours looking at the numbers and shaking his head. I was relieved with the labs at the end of Feb, but now we are back at 162 AST/378ALT and 157ALK. Those numbers have been up and down for 21 months, never back to normal. Now he did order a GGT which is also sky high at 1200+ not sure if that gives them any clues.
So I assume we see his Doctor next time, she had an emergency and we were running late after having tire issues on our way there. She was reaching out to her network in the US to see if someone else had a simular case, but so far there is nothing. So I still have nothing new to share, we just move on I guess, he's doing pretty good. The fatigue is getting worse again, that's usually what happens when the enzymes are on the rise. There are more blood test ordered and pending, to see if the fatigue comes from the Hypothyroid or any other hormonal issues? He also has had High Cholesterol for a while, we were always told has to do with the Liver, but I don"t think so. This runs in the family, but none wants to start treating yet, that could be another issue on the liver. I am pretty certain Biopsy 3 will be not to far out, which is fine but so far nothing came back on the first 2.
Hope you are doing well!!!!!
Sometimes these stupid boards just lose messages for awhile. There are times when something pops up three days to a week after it was posted. But this is the LLS and this seems to be the type of software and service they're okay with on these forums. I'm sorry you had to write it twice but do appreciate the information.
I wouldn't be surprised to learn that a lot of his fatigue is caused by the continuing fluctuations in his endocrine system. That's got to take a toll on a person's energy and focus. I'm sure as heck not suggesting a dx here but it could be a factor.
Does the pathology from his biopsies show any abnormalities at all? If not, well, I'm totally stumped. Then again, if a doc at S&W doesn't want to risk messing with him and other docs don't know what's going on, the fact I'm stumped isn't exactly surprising, is it? But it does seem as if there should be something showing up on the pathology reports.
As I understand it, cholesterol,does originate in the liver. My family has a history of it, too and it recently became something they thought needed to be addressed. A cardiologist wanted to put me on a statin, probably Lipitor. I reminded her of my liver condition and she and my hepatologist got together and decided to put me on a cholesterol med that binds it in the stomach. I figure that helps control any contributions to my cholesterol from food. Don't know what that does with my body's tendency to produce excess cholesterol. But it's something. I'll find the name of the med if you'd like so you can ask the docs about it. (I have the generic and no clue what the trade name of the med is.)
Well, since ya'll had already done what I suggested, they must've been good ideas. I'm sorry you hadn't already found answers. Please keep us updated as you learn more. And we're here if/when/however often you need to vent.
Funny you used the word stumped....that is exactly what his BMT Team said before they referred us. His TSH and F4 seems ok, so I don't think it's the thyroid. He's been on meds for the last 3 years, so it seems they found the dose that works for him. As for the Biopsies, no nothing abnormal, he had some cells you find with autoimmune hepatitis, but nothing conclusive.
That is why they started the high dose prednisone when his enzymes went over 1000 in Nov. if you have autoimmune Hep. The Prednisone is supposed to bring down the enzymes, which did not happen, so he was taken off the meds.
Now you can have autoimmune hep without the positive Biopsy, also sometime Prednisone does not bring down the numbers.....and then there is the Pill called Imuran...used for the treatment . Well they did a test and Patrick can't break it down like most...less than 5% have that issue. So there is a lot of speculation, no answers and unless we have something conclusive, I don't want him to be treated. He's always been the different rare case, he's doing well, but his body has taken a beating and unless they are sure I don't want any more try this or that.
Next Monday the 25th will be HUGE, 5 years out of Transplant. Patrick is the perfect example of NEVER give up.....AML Primary Induction Failure, CNS involvement! Salvage Chemo, achieved Remission about 2 weeks before his Transplant........So ther is always HOPE!!!!With all he's been through, he's doing we'll, going to College and working and enjoying life as best he can. As his Mom it's very hard to not be able to fix this, but you know it gets frustrating. So sometimes I try not to worry about it, because I can't change it. I will let you know if we find an answer. His BMT said a while back, patients who struggle with chronic GVHD for years tend to have autoimmune issues. I did run into an article on that a while back.
You might just ask specifically if the pathologist is looking for signs or nodular regenerative hyperplasia. This is apparently an autoimmune liver condition that is showing up in a higher (than general) population among BMT/SCT patients. I think it's especially relevant if your son had Busulfan as a conditioning chemo. It might be they're simply not testing for it as it's not a common condition.
That's the name of my liver condition and the long journey to getting it dx'd is how I've become versed on the subject.
Time flies, it's already been a month since I last posted here. Well I did ask about the NRH and there are no signs of that. Usually it shows up in the Biopsy, but the bloodwork would look different. By now we have met with 4 adult Hepatologist and his case was also represented to a pediatric one by his BMT Doctor . No answers, his enzymes continue to be elevated with little change. We went this past week and there is no rhyme or reason to his case. I know his BMT Docs set down and made a chart of the last 2 years of his enzymes and it's up and down. We decided for the 3rd Biopsy, which will be peformed at the end of May, to make sure there are no changes in his Liver. Maybe they find something, but mainly to make sure his Liver is not getting worse. He had a little scaring at previous 2, but it wasn't bad, we just need to stay on top of this. One of his Doctor mentioned there is a world class Doc at Baylor, if we wanted another opinion, but I think we have enough for now. One of the the assumptions/guesses is toxicity, this is what they thought in the beginning and this is what my son thinks it is, but how long should it last??? Or maybe that's a guess they come back to since no one has answers.
Now his BMT Team is currently doing more testing to see if he has a Immune deficiency. On one of the many test ordered, they noticed that he does not show protection from one of his shots. He did complete the 1st year of re-immunizations, hasn't done the 2nd yet.....and we are 5 years out. Anyway he did not show any protection from the Pneumonia Vaccine, so he just had another shot and they will re-test. He also had to repeat the Hepatitis shot last year at double dose. So now BMT is wondering if his B cells are working correctly. That has nothing to do with Liver, but something they came across and since Patrick has a lot of colds and catches anything easy they wondering. I do know they wanted him re vaccinated asap. We just continue to test everything possible out there. He's doing well, I say the Fatigue is the biggest thing, but can't complain. Hopefully you are doing well too!! There is not much going on, but that is good just trying to enjoy Life as best we can.
The only thing I remember about my blood work was that I had high liver enzymes (bilirubin was fine) and my PLT were really low. I keep seeing "hematologist" but haven't seen "gastroenterologist" or "hepatologist" represented in the list of docs you've seen. Whatever else, a hep might be able to bring some new eyes to the situation. If it's not NRH, it might be any number of autoimmune or liver issues.
I just keep thinking back to all of my hem-oncs and even the gastro at the Hutch kept telling me it wasn't anything they could find. Turns out it was staring them in the face but they didn't know enough about it to recognize it.
Good hunting and keep us posted.
Has it really been that long since I posted? Anyway Patrick is doing well, liver number are still high around the same numbers they have been for the last few months. We decided on another Biopsy as he is now on break from College and we wanted to make sure there is nothing going on internally that we are missing. This was done last week Thursday and we will have a follow up in 2 weeks. Haven't heard anything yet, which is good, as long as no one calls :). Anyway I will let you know if they find something this time.
Hope all is well with you.
Things are just fine out west. For now anyway, fire season's a comin' and we've already had one or two small ones. And we just had our last snowfall a month ago.
I'm very happy for ya'll. Doing well, feeling well, that's what we fight to feel one more day in our lives. When we get there on a regular basis, that ain't nothing but great.
I hope the biopsy reveals something. Even when it's something you don't want, it seems it's always better to know what it is. Something's causing those enzymes to run high and it's better to know what it is. My liver issue is supposedly not life-threatening (then again, my doc's still kind of young and she might not be telling me all of it...who knows?). Anyway, if I hadn't found it and continued my life as it was, it could have become a serious issue.
So stay with it.
Glad everything else is going well, though. Please keep us informed.
Sorry it is taking me so long to update, we were out of town and the Hubby is getting ready to go overseas and I have another teen going of to College soon. The Biopsy results came in and again 3rd time, nothing conclusive, some scarring no diseases detected, but we do have toooooo much Iron. They finally send a sample to the Mayo Clinic and he does have the transfusion induced Hemochromatosis. I asked about this last year and I'm irritated that this hasn't been dealt with till now, we started phlebotomy 2 weeks ago. He's been twice and is supposed to go weekly as long as his HGB will stay above 11. Not sure if he will be able to have it done this coming week, since it's dropping and he needs some kind of energy for Camp Discovery (he is a Camp Counselor) for the kiddos now. We will see how it's going. I do know his Ferritin fell already from almost 2400 to 2144. He is getting tired a lot faster now.
We do have one new issue and that is itching, which I hear is common with Liver issues. Now his Doctor is still not convinced that this is the culprit of his high liver enzymes and they still linger at 212/457/242 but I guess it's a start. The frustrating part for Patrick is the itching, he takes a Zyrtec in the morning and a Zantax or Benadryl at night and can barely control it. I sure hope as his iron level goes down this itching disappears and the enzymes return to normal. It's only been 2 years (sarcasm).....you know as his Mom I'm always worried about what's around the corner and I sure hope we can reverse all this. But I'm glad we have something to start with now.
I hope all is well on your end
When I think "it's only been two years," I'm not thinking sarcastically. It's only been two years and many of us wind up adjusting to new things, fighting GVH and trying to find what our new normals are in living and in CBCs at the two year juncture. They didn't seriously begin to address my liver issues until around year five when I started jumping up and down about it. At that, it was a slow process.
A ferritin level of 2400 is high but not terribly so. Maybe Kelly will jump in and remind us what his levels were. And he was by no means the worst we've seen. The enzyme numbers you quoted back are high but, again, really not dangerously so.
The itching could be liver. It could also be neuropathy, allergies (remember, he will get his donor's allergies if it was an allo), medication or any number of things.
The more time I get between me and my SCT as well as the more time I spend on these forums, I begin to get a different perspective of time. He's been through one hell of a lot of trauma over the past few years. It would be nice if the body always bounced back but sometimes it doesn't.
Frankly, there are still a lot of areas where medicine hasn't figured out what's going on or what to do about a situation. My hepatologist gave me a little lecture to remind me about that a short while ago. So, it's not like I don't understand the impatience, I get there too.
Some things take time. It sucks but they do. I'm beginning to think it might take the rest of my life to get some of this stuff in order. Then I remind myself because of my SCT I have a lifetime in which to do it. Whatever happens to me today is more than would have if I'd not taken these risks.
I think it's great that they haven't simply dismissed the liver issues and, instead, are acting on them within what, to me, is a far shorter time than they did so with me.
I think it's great he's counseling at the camp. What a marvelous opportunity to get back into life and do something with it that's important. I hope he has a great summer.
I'll be looking for the next update...whenever it comes.
I understand it takes time to get answers, however when I'm talking about 2 years, it's of 2 years of elevated enzymes....to the point that he went above 1000 and we clearly established at our last visit, even though he has had those for 2 year non stop.....his liver will not be able to take it for 10 years. Iron overload is very common and they should have tested for it last year with his 2nd Biopsy!!!!
I am fully aware how,far he has come and do know there is a price to be paid called long term side effects......just frustrated that they did not ad this test last year. He's not text book, never been obviously and it frustrates me that it took 3 Biopsies to get to this answer, this was considered 2 years ago that's when they should have tested.
I do know how blessed he is AML primary induction failure 5+ years Remission, as a Mom I will never stop fighting for my boy :)
I'm talking about 2 years, it's of 2 years of elevated enzymes
I understand that. I'm saying that, with me, it was five years. Having a response where they're willing to take action on the liver after two years ain't the worst possible scenario. I'm not even sure five years were.
But my point was to be glad you got a response this quickly. Liver damage isn't anything to sniff at and ya'll are getting on it much earlier than I was able to. All in all, you could be where I was, being told that the enzyme numbers, while high, are not that high and biopsies are too invasive to warrant one over this minor increase.
On another thought, yours is the third post I've replied to this morning. It's the second one from a caregiver. Both of the posts from caregivers point out that their charge isn't textbook. I don't get this example handed to me every day so I'm going to take advantage of it.
None of us are textbook. We don't move predictably from point A to point B and so on. Frankly, if we were predictable, I think the docs would be able to figure out the exceptions better. Thing is we're all over the map with responses. The docs spend a lot of time scratching their heads because there is no firm pattern of recovery.
I think it's great to fight and it's a mom's primal duty and nature to protect her cubs. However, in this game it's not always easy to recognize victory.
I think you've won. Whatever led to it is in the past. Get ready for the next fight and hope it doesn't come.
HI, This is the first time on the board, I have heard the mention of Ferritin.
On my Sept Labs, my Ferritin was somewhere around 1000.0. The range was 10.0 to 106.0. At the end of my primary doc’s office visit, he was suppose to give me all my labs. When I got home I looked the labs up, on their internet Portal and noticed the Ferritin lab jumping out high, the primary doc, didn’t give that page to me with the high Ferritin. Also he told me my GFR was >60, but right belowed that, it says Creatine Clearance 53 range <60, Chronic Kidney stage 3. Below <60, 59 is the cut off between stage 2 and stage 3. The CML doc argues the line that say GFR >60 is 60, and the rest (creatine Clearance 59, stage 3) doesn’t count is inaccurate, because it is part of an equation based on weight and age and creatine clearance. My kidney specilist argues that GFR is creatine clearance and it is with a small fraction of being accurate.
Any how one of my liver counts the Bilirubin was a point high.
Here was the sum total of the argument, my cholestral and ldl being a little high, but my good cholestrol HDL being in the fifties, which is suppose to be good, as long as it is over >40, my total ratio which is 5 which is good, in range, and they want to put me on cholestrol medicine.
I said Cholestrol medicine is hard on the liver and muscle loss, among otherthings. My arguement; my kidney filter are in stage 3 chronic kidney disease, my Bilirubin is 1 point over the range, and my Ferritin, which is a protein cell that hold iron storage, when the liver has to much, is high at around 1000.0, it should not be over 106.0. Anyhow I took some supplement a couple of months ago, one of them being Bromlain for inflammation, and the Ferritin went down to 145 so primary doc said don’t worry about ferritin, it’s down but the range is 10.0 − 106.0 so it is still high even with the supplements. Also primary doc said it was caused from Inflammation. That seems to be my whole probably, had my good bladder taken out because bile duck was damage to much inflamation, kidney filters to much inflamation, and now liver to much inflammation. That seems to be the magic word of my problem from all the docs is to much inflammation. My guess that would be from the Gleevec for CML so I got the CML to lower dose from 400mg to 300mg back in Sept, so I think between the supplement and lower my gleevec dose the Ferritin has went down.
This is the first time any of my doc have mentioned Ferritin and did not give me that lab report. Also I noticed on the CML and Primary doc internet portal, that all the GFR kidney creatine clearance, had been deleted or were left out. Also I was locked out of the internet portal to see my lab, and it took me nearly three weeks for someone to reset me. The technical support group said it was my doctors fault, and they should reset me, and the doctors said they had nothing to do with it, In the end the technical support group reset me, so I can get in to look at my labs reports. By the way do they do not post PCR/FISH on their medical portals. This all tends to make me think it was done on purpose, since we are argueing over my labs, and they are not giving all my labs to me, and locking me out of the portal, and trying to get me to take cholestrol med’s, that are evening more damaging to my liver and other organs.
Am I losing my mind? My new primary doc got pretty ruff in his attitude with me and went right back at his throat. I am not stupid I can read the reads and the warning notes. We ended up on a poor note and told the desk I was not coming back. So now I still have a CML doc, a kidney doc, a cardio doc and I can go to a outpatient clinic if I get sick so I guess maybe I don’t need a primary.
After having said all that, what about my Ferritin is it part of over loading iron in the liver and body?
I would assume that the high Ferritin and high Bilirubin Total, is from taking the 400 ng Gleevec for CML. The Ferritin level has went down to 145, since I have been taking Bromlain supplement for inflammation, and lowered my Gleevec to 300 instead of 400. I think I started the Bromalin Nov 10 and lowered the Gleevec to 300 in Sept. I do not know what my Ferritin was before Sept 2013 because I have never seen it on any of my lab reports and just happen to see it on the Internet portal, so I assume they have just not been telling me. That upset me because what else do they not tell you. There is a health care bill of rights.
Sorry I probably ramble and did not put this in good chronological order. I just saw someone had post about the liverer and mentioned the Ferritin.
Thanks for any insight, on any of the above,
Wanted to respond yesterday pam, but it required too much thinking.
Most of the folks on the transplant forum have high ferritin levels due to multiple transfusions. And i suspect that there is some degree of inflammation due to the transplant, gvhd, etc. Most of us have been treated with phlebotomy over several months, couple of years in my sons case, and a few have had chelation with iv meds which tends to work faster.
I am not a doctor and really dont know much about the liver but with my sons experience i did learn a few things.
It would have been interesting to have a baseline ferritin level to compare with because truthfully that is a significant drop in level which makes me wonder if it was an error, if it was some sort of infection/inflammation or if there was some sort of correlation to your leukemia at that time. I do know that my sons oncologist told us that ferritin is an acute phase reactant and elevates in cases of infection or inflammation. How quick it can return to normal, i really dont know. Sons oncologist also told me that it is not a true test of iron storage, it only reflects what is in the blood at that time. There is an MRI specific for iron overload deposition, which my son did have, but i truthfully doubt the physician would order one in your case considering your current blood level and the cost of an MRI, unless there were symptoms of iron overload that he was concerned about.
Leukemia patients are complicating patients, transplant patients are basically unchartered territory for many if not most gp/family docs.Heck, the same goes for the specialists. Unfortunately that puts us in a position to stay on top of things, often trying to find the missing puzzle piece. I know noting about gleevec but this article may be of interest to you.
Wishing you the best in putting your puzzle pieces together and hope you are having a wonderful holiday season.
Most of the folks on the transplant forum have high ferritin levels due to multiple transfusions.
That's what I was going to say. I saw this yesterday and thought it was too much thinking and reading as my eyes were wearing down.
Frankly, I didn't know you could develop high ferritin through other means than transfusions. But I don't presume to know much about the whole thing.
Thanks for the link quote
That pretty much says it all. I am glad I pushed the doc to lower my Imatinib, Gleevec. He wanted to raise it back up but I said no. I think the ferritin went down, because i Lowered my Gleevec and in November started taking inflammations supplement called Bromelain.
I still do not understand how to read the numbers on the labs
My Ferritin in September was 160.0 the range was 10.0 to 106.0. Dec 13 my Ferritin was down to 145.0. still over the range of 106.0.
I was reading about it causing inflammation and being in your organs. Makes me wonder if that is why my Kidney filters are failing and in stage three. The kidney doc said ithe kidney filters had inflamation due to high blood pressure and to eat low sodium. I told him I have been on blood pressure pill since 1997. As far as the sodium, my sodium and potassium run a little low on my labs. So I really just think they don’t want to say it is due to the Gleevec. That is what my cardio doc said. He said if you went off your meds for 2 months and inflammation goes down and you go back on the Gleevec and the inflammation goes back then I would say the cause of your problems is the Gleevec. I said docs won’t admit that and he said if I gave that drug to you and it caused those problems I probably wouldn’t either. Of course no one was in the room to hear him say that.
I don’t want to change drugs the newer drugs for CML are having a lot of problems with fatalities of the heart. Took one drug off the shelf and had to revise the warning and the guidelines.
So I will just stay at a low dose even though my Leukemnia cells may be higher then what they like, at least they are stable and no mutations.
Thanks for listening. It really is getting to me when they hid information from me. Then talk to me in a hateful manner. I think I held my own pretty darn good, but it took some Grace from God not to break down. I felt like hiding in a dark cave somewhere. Here I am trying to be cheerful for the holidays and it is hard.
My son has had labs drawn at 2 different hospitals and various labs. From my experience, i have never seen ferritin levels interpreted other than the way they are written. It appears to me, and again that is without knowing your lab or looking at your lab reports, that your ferritin level is 145. That may be the reason why they did not seem to get all that concerned.
As tex said, his doc did not get worried with ferritin levels of 1000, and my sons hem-onc doc as well as transplant physician, were pretty much on the same page. The average ferritin level on the transplant forum from excessive blood transfusions, i would venture to guess is probably around 2,000 with the exception of kelly who had a ridiculously high level of 26,000 or something like that warranting IV chelation. Hematologist oncologist deal with patients with primary hemachromatosis which often times have ferritin levels much higher than many transplant folks on this forum. These docs are used to high numbers so when they see 1000, they dont seemed to get too upset and while i dont know the cut off range of when iron deposition starts or damage occurs, most literature i have read, suggest higher levels than 1000. In previous threads on this forum, folks have mentioned not being treated for high ferritin unless it got to a certain level, in my sons case 2,000 was the magic number.
It seems like you are trying to stay on top of your health and looking closely at all the details, much like me. And i understand your frustration with how certain physicians treat you. I actually did fire one of my sons specialists for the very same reason. Following trends along with keeping a journal of doc appointments and changes in medication, health, labs etc. seems to help me. But do remember, ferritin levels can increase for various reasons including a change in the leukemia status. In that particular case it may not be the gleevec but the leukemia increasing the ferritin. The whole picture has to be evaluated.
Wishing you the best.
It seems that in September, you were 54 points over the top of the range and in December you were only 39 points. Is that where you're having difficulties? I don't think most docs would do anything about that in most circumstances. If they did, it would probably take only one phlebotomy to do this.
In fact, one reason for their reluctance to do anything is probably that you can't predetermine how much ferritin they will draw out in one procedure. They took mine down over 200 points in my first one. Of course, they wouldn't put you into negative counts. But they might not see any practical difference between 145 and 106.
I hope this helps, Pam. Let me know.
Hi Tex, Tried to do a reply from my IPAD but button was dead. Anyhow laptop is working OK.
Sorry I got confused on the labs range. The range from this lab, for Ferritin was 10.0 − 106.0, and my Ferritin was 160.0 in September and in December the Ferritin was down from 160.0 to 145. I saw others posting here with Ferritin numbers of a thousand or more, so I thought the way you read it was maybe like reading white white blood cells exp. 3.0 − 10.0 would be a range of three thousand to ten thousand, but I guess that is not the case on Ferritin levels. Seem those getting blood transfusion can have ferritin as high as 2400 +. I have never had a blood transfusion of any kind.
What upsets me is my new primary doctor had promised me, at intial consult, that he would give me all my labs and go over All of them. So I went to my next visit, having had my labs prior to the visit. He went over what he thought was important and handed the labs to me on the way out. Well he did not go over the labs that were out of range, especially creantine clearance that was 53 chronic kidney stage three, that is what it said on the report. Also he did not mention or give me the lab report on the Ferritin. Anyhow when I got home, I logged onto their internet portal, and saw the Ferritin. I was shcoked that is that high and I don’t ever remember seeing any Ferritin labs and I was dx in 2005. Not only did he not give me the hard copy or mention my Ferritin was high, but none of my GFR kidney desease was mentioned on their internet portal. I Have had labs at this corrporate clinic since March 2012. Then the next week, I was locked out of their internet portal, where I could not see any labs, but could pay bills and make appointments. Took me two weeks to get them to reset my access. But I went back to the doctor office and made them give me the paper labs that I did not have. So the next time I got a hard copy of my labs for my visits and my questions in order, and things went sour, I mean we really bumped heads. I held my own pretty good to the end and then I just hung my head and cried, he still had no mercy, kindness, or compassion, on me.
It seems to me that my doctors including my previous primary, do not want me to have, or know my lab results, at least not the ones that indicate anything wrong with liver/kidney, etc. They are concerned about my cholestrol levels, of which I don’t want to take any more toxic drugs, you help one problem but you trade it for a dozen other problems. These TKI for Leukemia are toxic enough in themselves with adding no more. It does not make sense to me to kill Leukemia cells if you are going to kill the kidneys and liver, especially at age 66 years old, my organs are old and they can’t take this standard dose, but they don’t seem to care if they take you to the edge of death or have a poor quality of life. I don’t want to be their guinea pig, for these drugs that are far from a cure and feel like a slow poinson. The body is like a machine and you mess with one thing and messes something else up, that is the way I see it. . This summer I left my old primary doctor of 13 years and paid for my medical records. I went thru 13 years of medical records and there were things; like free standing fluid in the stomach cavity. I forget the name of it, but a mass of enlarged blood vessels, my gall bladder removal was due to inflammation and dammage to the bile duct tube. Seems my problem is inflammation everywhere. I have a stack of reports, I need to put in order and file, so I can easily find them, they are a mess. I guess I am more upset about them, docs, withholding information and when I find out about a lab that is out of range, no one seemly wants to take the time to explain it to me. Then I am left to look it up, on the internet or other places, then the docs don’t like that either.
Now they want me to sign a paper where they have access to all medicare information to any health care treatment I have, in any state. I called and they said, so If and when I travel they will know everything from Medicare. Well I am planning on going to Florida and maybe moving there and I would like to find a new team of doctors and I don’t care for the doctors up north here in Indiana, to know anything. So I called Medicare and told them NO.
I have decided since I have been on Gleevec since 2005 and have all my labs now and have went thru them and understand them the best I can. I pretty much know how things are working with my treatment of CML and Gleevec. So I think I will not go back to the doctors for six months. As for primary or any other docs, they all go along with whatever the CML doc says. My old primary doc and kidney doc said I have 3 stage kidney desease but the CML docs says the lab report are not accurate because they are based on factors like your age, weight and creatine clearance. So CML doc seems to call the shots. I even talked to the new primary doc about that. I asked him to oversee all the doctor reports and he said he would not rule over my CML doctor nor did he want to interfere with the other docs. So the long and short of it the CML doc rules not the primary.
I am a mess. I think I need a break from all docs and all labs, and just take my Gleevec, and supplements, go to Florida and forget about all this. My TKI refills are good for another 4 months. So nobody will be wondering about me at least for 4 months.
I don’t know how you all, Transplant patients, keep it to together and figure things out and have doc’s that will work with you and tell you all your options or treatment and what is really going on. I don’t think most CML oncologist are like that.
Yes I think if we could sell our home here in Indiana for a decent amount, our area took a hit a few year ago but housing market coming back up. I think I could survive much better in sunny Florida. You know like a Florida Orange Tree!! Yes I was in Florida for the whole month of May and came back with my massage therapist and others saying Florida was good for me health wise.
Okay, just to make sure we're completely clear, when we talk about ferritin being 1000, it is as if we're writing it 1000.0. We aren't truncating the number in any way like we do for our WBC. So, you're 145.0 is 145, not 1450.
Doctors' offices are a mess. I know you've found a lot of results you weren't originally given but I would suspect the reason you didn't get some numbers was because of clerical error instead of intent to conceal information from you.
I think a PCP has value as one to coordinate communications between doctors in some circumstances. On the other hand, asking a PCP to comment on treatment except when there are obvious conflicts is like asking a hose painter to comment on a mater artist. The education and talent generally lies on the side of the specialist. However, since we actually see our specialists, it's also kind of on us to give them complete information as to our other conditions and treatments.
Still, nothing ever excuses rudeness in a doctor, especially a doctor with a seriously ill patient. This guy needs to be fired so whether you move or not, find a new PCP in the area. (And try FL in August before you make too much of a commitment. )
I understand you're at a point I think many of us get to. You seem to be ready to kick ass and take names of anyone hanging around the area right now. That happens. There's only so much frustration a person can take and there's a lot of it that just comes with the diagnosis.
Try to take some deep breaths even if you don't feel you need them. You're just swimming through a river of gators at the moment (something to get used to if you move to FL) but the waters should clear shortly. Just keep moving forward.
>>You're just swimming through a river of gators at the moment (something to get used to if you move to FL) but the waters should clear shortly. Just keep moving forward.<<
You are so.... Funny, made me laugh, this early afternoon. It's only 19 degree here in Indy In, but a bright sunny day. Its around 80 * In Florida. Thinking of looking to go there soon..... I hear you about checking Florida out in August. I imagine my eye glasses would fogged up, and my hair would friz and probably have soaked clothes from the perspiration. We usually travel for a month early spring or late fall. Florida is noted for their luv bugs and of course gators, Really got to watch the gators, you will find them about anywhere. Got to check the pools before you jump in.
Bless you for reading my long, wordy, mangled notes. Trying to put so much data in and remember detail in chronological order is hard to do, let alone cipher it, and a clever end note to follow. Your pretty good at making one feel good in the end. Thanks. Frustration is putting it mildly. When you see your organs taking a hit and noone seems to be concerned but me. I want to thru some cold water on them and say, to many folks I know on kidney dyalsis and dying and I don’t want to be one of them. So it like take your pic what you want to die of. Kidney, pancreas, liver failure is not one of them. Seems like there should be a happy medium to find a drug that does not destroy the rest of your organs in the process of killing the leukemia cells.
Just wondering though, what made my Ferritin come down from 160.0 to 145.0 from Sept to Dec. Was it lowering the dose of Gleevec, the Supplement Bromelaine, I starting taking in Nov for inflammation. The PCP did say the high Ferritin was from inflammation, but he didn’t say why the inflammation, just don’t worry about it!. And the kidney doc did say my Kidney GFR damage was from Inflammation. I did have my gall bladder removed from the bile duck tube being dammage or inflammation if you will. So the common denominator and killing off my organs seems to be inflammation. One of the links above talked about Gleevec causeing High Ferritin as well, from some desease, don’t recall the name of it. But the onc wanted to raise my Gleevec back up, I just said no, didn’t mention why, I was to worn out to debate anything, just no worked OK. But I think the inflammation and stomach fluid and the side effects is really from the side effects of Gleevec and not the CML. I read a report yesterday, listing all the side effects, from the Leukemia drug, TKI’s, and science research said they are trying to focus on drugs that have less damage to our organs and still have optimal response, still no cures in sight. It did mention by far that Gleevec was the safest, but the other drugs were faster and better response. At 66 years old I’m trying to stick with the low dose of Gleevec. Gleevec to become generic sometime in 2014, so I know there is also a big push to move on toward the newer drugs, especially the newest Bosutinib approved by FDA Sept 2012. They don’t study these drugs very long and not on very many patients. Makes you feel like a guinea pig and sometimes the damage is irreversible. So thinking outloud, I think I will stay with the lower dose Gleevec, inflammation and all. Just not going to get away from the side effects on any of the drugs. The other drug Bosutinib they had to pull it off the shelf for awhile, it had to many fatalities, FDA put new warning and restrictions on it, now its back on the market now. Just never know what fatal side effects, what one may have the newest and latest drugs.
I don’t know how you transplant patients keep up with trying to put the puzzle together and what is the best direction to go.
Thanks for your insight.
I don’t know how you transplant patients keep up with trying to put the puzzle together and what is the best direction to go.
I don't know either. But what else are you going to do, y'know? If you don't keep putting one foot in front of the last, you fall on your face. That hurts. Better to run off balance as far as you can.
I wish I had a clue how inflammation can lead to iron build up but I don't. With AML/ALL/Transplant patients, etc. we get so much red blood over the course of our tx that it builds up somehow. I guess the body doesn't process iron out very well.
If you have ascites, I would definitely want to know why. I have it and it's because of my liver disease. I'm not sure why but somehow my liver excretes fluids which then "weep" into my abdominal cavity. I have to take Lasix and another water pill every day to keep that at bay but so far, so good. It's not an issue at the moment.
I hear what you're saying about how it seems you're choosing what you're going to die from. In a sense we have to sort all that out before transplant as it could be the transplant which does us in. But here's my quick guide to making that decision. Go for the one which is most likely to kill you the latest.
One thought I have is that you might want to be seeing a gastroenterologist. It sounds like you might want someone taking a good look at your innards.
Pam, I think it's good to have a PCP. I've gone without one for years as I had a team of specialists monitoring so may things, I felt I was in enough hands already. However, recently developing a relationship with a PCP has been a good thing for me. I have someone watching the things other docs weren't, the daily niggling things like glucose, BP, etc. My other docs noted this stuff but really didn't deal with it.
I'm not suggesting you return to this knucklehead. It's still a good idea to have a primary doc. Hire 'em and fire 'em until you find the right one for you.
Here are some things I've found that might help. First, while statins are hard on the liver, there is a cholesterol drug that works in the intestines to remove the bad stuff, not the liver. It's called Cholestipol. I use it because I have liver disease and my cholesterol is a touch high.
Second, a ferritin count of 1000 is not considered very high in normal circumstances. I had a ferritin level right there. My hepatologist (liver specialist) didn't think anything of it until a transplanter pointed out that with my liver disease, 1000 could be problematic. I've had phlebotomies and gotten my ferritin down into the 300s. I have so many tests and other things going on, I put that on hiatus awhile and my doc doesn't seem to be overly concerned. She just told me to get back at it when I was up to it.
So, even with liver disease my liver specialist didn't originally find 1000 to be a troubling count. It's only because of the disease she had second thoughts. At that, she's not that upset that I'm not taking care of this quickly. It's been over a year and she shrugs.
Based on the info on the streets, you had more than every right to be concerned. Given the best thoughts of my "medical team" it's not as big a worry as other counts being out of range.
My guess is you've stumbled into a medical Twilight Zone where you're seeing information that they're seeing but you're interpreting it differently and the docs don't realize that. This is where a good doc will slow things down, back up and make sure we're all on the same page. Apparently this is not a strong suit in some of your docs.
Thus, you might want ti recommence the conversations or get new docs. But everything I know -- which is admittedly not much at all -- indicates this isn't a huge concern. But, again, I want to say I understand completely how you would figure it is. I would do the same thing except I got into the whole conversation in a different door and with a doc who loves to draw diagrams, lists and explain things. I've really done a good job formulating my team with docs who like to educate. I think it's really helpful to those of us with multiple, long-term health issues.
Actually I do not know how to read the numbers for the Ferritin. the lab report says Ferritin Range is 10.0 to 106.0 mine was high at 160.0, that was in Sept. Does that mean 1600 or 1060. A couple of weeks ago my labs report said the Ferritin was down to 145 instead of the 160.0 . I started taking a supplement in November, called Bromelain, it is suppose to help with inflammation. Plus I lowered my Gleevec so maybe the both of them helped to bring the Ferritin down. I don’t know whether I should be worried except the primary doc withheld the report from me. I found it on the internet portal.
For example your white cells range may be 3.6 − 10.6 meaning three thousand to ten thousand. So I am not sure if the 160.0 is one thousand six hundred or one thousand sixty. I am confused how to read the numbers.
I think my new primary doc, being probably about 60 years of age, and a little difficult french accent, is sometimes hard to understand. Is not a doc like yours. I think he is probably detailed, but doesn’t like to explain or be challenged. He can be quick to be rude in a bad way. Had me in tears. My husband was with me, a quite gentle man and it even upset him. The doc kept walking out of the room and coming back. He would answer my question with well why don’t you just look it up on the internet. Or he would say since your daughter gave you these supplement why don’t you ask her. It just went on and on, it didn’t matter what I asked, he was very angry and belittle me. He said he didn’t have time for this and went running out of the room, then he would come back up in my face. Like I didn’t appreciate what they were doing for me, and how dare me. It was awful.
In Sept he went over my labs at least the ones he wanted and he was suppose to give me all the hard copy paper labs. But when I got home I logged onto there internet portal, and compared what he gave me to what was on the portal. He never gave me the paper with the high ferritin. I don’t ever remember seeing any Ferritin reports, so I never knew it was high. Also none of the GFR creatine clearance stage three were listed on the internet portal went back two years. Then someone locked me out of internet access took me three week and a lot of complaining to get back in. It make me nervous when they fib to me or down right lie or withhold some of my lab reports. to I have a kidney doctor so I do not how to read the creatine clearance stage three, I do not what it means. I’m sure my kidney doctor is very smart. But these two docs, the primary IU and ONC IU tell me the creatine clearance third stage means absolutley nothing. Well I have two docs who totally disagree with that. I should have been diagnosed with CML in 2002 not 2005. After diagnoses in 2005 I went back to doc and got my last CBC which were 3 years prior, my platelets were almost 100,000 high and my granulyte were off. My primary doctor never told me and didn’t even run another CBC for three years. That why I always ask for my labs, and I find they still withhold lab report from me.
It give me aniety. After walking out of the primary docs office and having an appointment the next day with the oncologist, I was just to worn down, to ask much of anything. I felt like I had been beaten to a pulp.
I tried to get in as many doctor appoinment in 2012 as I could, so I could get a breath of fresh air for 2014. I think I will just take low dose med’s and not go back for 6 months instead of the three months, I don’t think I can take their sarcasm anymore, they wear me out.
I have never had a blood transfusion to make my Ferritin high. My hemglobin sometimes runs a little below range. I don’t know what the difference is between low hemolglobin and people who have to get iron infusions and me who has low heemoglobin and yet high ferritin. It is complicated. The doc did say it was from inflammation, but what is the source I would assume it was the Gleevec. LIke the inflammation to my kidney filters and gall bladder bile duc.
I had a MUD transplant in 2009, with significant skin and liver gvh following a year later. My LDH was in the 500's but is now 164. I think that happened naturally, although I took a statin for about 6 months. As for the the high liver numbers, I continue to have those. I'm on a drug called Ursidiol (sp?) for that, but last year I had a liver biopsy that showed no disease. They're treating it a gvh of the liver and say it will resolve eventually. My doctor's biggest concern right now is weaning me from prednisone.
My liver enzymes were high after chemo and the stem cell transplant had to be postponed until they got lower. My wife found this site and we started eating some of the foods on it and my liver enzymes dropped dramatically.
Whether it was due mainly to eating those foods or if they naturally fell, or a combination of both, we can't tell, but we continue to eat this stuff.
We don't do a "liver cleanse" we just add the foods on the list to our diet.
Nice contribution, Jim. We're generally wary about "natural healing" stuff around here but there's nothing wrong with eating better. Except broccoli and cauliflower. I wouldn't give you a dead rat for those.
Never think of beets anymore. This is the second reference I've seen in 24 hours. Should probably re-introduce them to my diet you thing? Someone trying to tell me something here?
Thank you Jim for your reply, we have been researching and trying to make better choices with food. Of course this is a Teen, so there is still a lot off improvement needed. I can't get him to eat some things, so we tried natural smoothies and fruit drinks as well as eating more apples and green things, lots of raw colorful things are the best. We didn't have Liver Issues during his Cancer Treatment or Transplant years ago, they started after being on Gleevec for chronic refractorary GVHD with scleroderma features, but he hasn't taken those in almost 15 months. We just don't know and try to make better choices, next Monday will be his 5 year Anniversary and we have been trying to get to the bottom of his Liver issues for almost 2 years.
I am curious as to how your team ruled out cGVHD. My liver numbers are similar because of GVHD (ALT 393, ASP,149, AST,171). When I was finally tapering off the Prograf my liver numbers spiked so then my Prograf dose was increased and I went back on Cellcept. I will find out in a few weeks after my next blood draw if my liver is responding. Hopefully they won't decide to put me back on prednisone. GVH is always the first and most likely suspect with any allo transplant patient. Those of us that have GVH are like the illegitimate stepchildren in the Hem/ONC clinic. The cancer is gone but we keep coming back with pesky problems. There is no organized discipline addressing cGVHD. There should be. The fact that several liver doctors couldn't explain suggests that because GVHD is so rare , no one has seen it before. Outside my clinic, my dermatologist, dentist and primary care doc all have had no prior experience with cGVHD. It's an example of Occams Razor. The most obvious answer is often the right one.
What they have told me repeatedly is that they can't actually dx GVH without a biopsy. I mean, that's all any of us thought we were dealing with. I kept pushing for a bx and they were loathe to do it.
Through both a CT and MRI they could tell my liver looked more cirrhotic than a target of GVH. That's what finally convinced them to do the bx.
So, while the simplest answer is often, maybe usually, the correct one, following that logic can sometimes lead us to overlook the real problem by settling for a (incorrect) dx too soon. Thus, the actual problem isn't addressed and the actual situation can deteriorate.
Liver bx's are obviously dangerous. The guy originally scheduled to do mine looked at the images before getting started, saw I had water on my liver and decided to pass it to another doc with a better touch in that arena. I mean, they don't like to fool with it. But knowing what I know, I would insist on one should any other liver abnormalities show up.
Now Patrick is 5+ years post Transplant and Remission, he never had Liver Issues in the first 3 years (that I know of). He does have chronic refractory GVHD. Now to answer your question, over the last 2 years there were 3 different Biopsies performed and all 3 of those ruled out GVHD. This is the first thing his Transplant doctor suspected even though it would be a very late onset, the other was iron overlaod. When he first had elevated enzymes they thought it might be from the Gleevec he was taking for the refractory GVHD (he is not able to straighten his elbows/limited range of motion), so it was discontinued and his enzymes came down a little but jumped back up. Then he started treatment for autoimmune Hepatitis with Prednisone, but that wasn't working either. His Biopsy showed a mild hepatitis, however never was conclusive. Since we are talking about a new Immune System it obviously can overreact and in his case, the saying "oh but it's Patrick" he's always very different.
Now this last time the Biopsy was sent to the Mayo clinic and there is a conclusive Iron overload due to the Transfusions, so he started phlebotomy for that. We only been twice, since his veins blew at last attempt, we will try next week again and hope this will be the answer. We won't know if this was the cause until further down the road. His enzymes were all over lowest ALT was about 300 something highest over 1000. He does have severe itching since May that gets harder to control we hope this will disapear as he gets rid of this excess iron.
I hope your next blood draw will get you off the nasty Prednisone. When was your transplant and for what? I certainly understand what you mean when you say that no one outside your specialty docs understands cGVHD. We haven"t even been released back to Oncology from his Transplant Dr. 5 years later but that's ok, he's doing pretty good for the regiment he received.
Cant help but think the issue is more than iron overload. We have had plenty of folks on the forums with elevated ferritin levels, being chelated or phlebotomized, including my son who has been phlebotomized monthly for 2 years now, but i dont recall any consistent link to elevated liver enzymes especially at levels less than 3,000. Not saying it is not possible, just i dont recall seeing it.
With the level of gvhd that your son has and has had, it really sounds to me, like some sort of autoimmune hepatitis or gvhd response. Wish kelly would pipe in, his ferritin was ridiculously high at 16,000 and he was getting desferol and phlebotomy every 2 weeks if i recall correctly.
While it seems to be fairly common for transplant folks that have had aml to have high ferritin levels due to the number of transfusions received, ferritin is also an acute phase reactant protein and can elevate due to acute illness as well as inflammation such as autoimmune type disorders or gvhd.
Has your son had an MRI specific for iron overload? The mri is supposed to be more conclusive and specific as to how much iron deposition in the liver as well as spleen, bonemarrow, and heart. Maybe it could give you some added insight as to what is going on with that liver. My son had one about a year ago, it had never been mentioned prior to that because although the hospital is a big hospital and routinely did mri's, they had not acquired that particiular mri machine for iron overload. Just a thought.
Hoping you all can get to the bottom of this.
Mike, your comments about recognizing and diagnosimg cgvhd....spot on.
Cant help but think the issue is more than iron overload.
I agree. However, the extra iron could exacerbate the problem if there's something else going on in the liver.
In most cases they would worry about a ferritin count of 1000. With me and my liver disease, they did get concerned about the extra scarring the overload could bring.
If it's creating more damage, I think it could raise already elevated enzymes a bit higher.
Merry Christmas!!! Just figured time to update...Pat is doing well, he has had 16 Phlebotomies so far and his Ferritin is down to 80 from 2400+. He still has elevated liver enzymes, hangs around 4 times the norm. He did have a scan a few months back of the liver and heart looking for Iron overload, luckily nothing on the heart. We continue to see the Hepatologist every 2 months. Still don't know why or what but we might never. He is doing well that's all that matters
Glad to hear this. I love good news. I trust they're keeping an eye on his liver beyond his ferritin and enzyme rates. So, if they ain't found nothing, that sounds pretty darned good to me.
Hope you had a great Christmas (sounds like it) and that 2014 is the best year yet.
Thank you for responding mamawarrior . I often due wonder if there is something else going on, but Pat actually is doing pretty well considering everything. He works about 30 hours a week and is a College Sophomore doing the best he can. As far as the iron specific MRI, the Hospital we go to in San Antonio has this machine and his NP mentioned last month in an e-mail. We have an appt on Tuesday with his Transplant Doc, will have the MRI and also added the Liver Failure and Transplant Clinic due to his itching. So far he's had 4 phlebotomies and he is going weekly, says he feels relieve as soon as he gives blood, tired the following day, but better after that. However there was a lot of itching last week where he even begs to give blood..., which has me a bit concerned. His labs look ok and Ferritin is coming down as well. I guess we will see what info we get out of next weeks visit, sure hope to get some answers and resolve the itching.
Hope your son is doing well, how old is he? Patrick will be 20 in the Fall and was 14 when he was diagnosed with AML M1 PIF.