Author Topic: I want my hemoglobin back! (Read 21214 times)

KimInTheForest · « **on:** November 03, 2015, 11:02:42 pm »

… and my ferritin too, please.

I am now 14 weeks post-treatment (after 12 weeks of Harvoni+Riba).

The good: My red blood cells are finally back up to the level I started treatment at, which was 3.9 TI/L (reference range: 3.50-5.00). And I have been feeling really good the last couple of weeks.

The bad: My hemoglobin is still below normal. After 14 weeks of no ribavirin, my hemoglobin has only climbed from 99 g/L at EOT to 107 g/L. (Reference range: 115-155) I started treatment at 119.

The ugly: My serum ferritin is plummeting, even though I have been taking daily iron supplements for the past 9 weeks, resumed eating red meat (after years of vegetarian diet), and am separating my tea-drinking from iron-rich meals or supplements so there is no blockage of iron absorption from the tea.

Is my serum ferritin dropping because my body is trying to use it to manufacture hemoglobin? That is the only reason I can think of. Do any of our nurses here know? Lucinda?

My serum ferritin results:

Week 5 post-tx: 29 mcg/L (ref range: 15-180)
Week 9 post-tx: 41 mcg/L (after 4 weeks of daily iron supplement)
Week 14 post-tx: 21 mcg/L (after 5 weeks of a stronger daily iron supplement)

kim

KimInTheForest · « **Reply #1 on:** November 03, 2015, 11:38:56 pm »

At the risk of looking like I am talking to myself… I will say that I have managed to answer my own question with a bit more google-searching. And yes, serum ferritin can decrease when the body is actively involved in increasing red blood cells and hemoglobin. So even though I am taking in (and absorbing) more iron than I have in years, my ferritin is decreasing for that reason: lots of RBCs being built… which is a good thing.

I am now thinking I might want to double down on my iron supplement, since clearly I am not getting enough into my body to keep up with demand for rebuilding RBCs & Hgb.

I found this link to a really good article with lots of info clarifying distinction between ferritin, hemoglobin and iron, and how they inter-relate.

http://www.runningwritings.com/2011/11/ferritin-hemoglobin-and-iron-deficiency.html

cheers

kim

Mugwump · « **Reply #2 on:** November 04, 2015, 04:46:20 am »

Try toasted malted barley. It is a very fast way to get iron into the system. In fact many heavy ale drinkers in the UK are told to back off the consumption of barley malt specifically if they have iron overload.

Of course you do not want to go out and drink gallons of a stout, but essentially this is what you need. I would suggest going to a brew shop and buying some pre made malted barley in powder form for use as a food.

It works well in pancakes, muffins, coffee cakes and a whole host of biscuits etc. The other good ol' standard is Swiss Ovaltine which is now only available from China because our production of barley malt seems to be all going into the beer industry and we no longer eat healthy the way we should.

To me this makes more sense than say going out and eating Polar Bear liver LOL which is so high in iron that it is toxic or taking supplements which are very hard to quantify and can also result in toxic levels of iron in the blood.

Then again some liver from a good butcher will also have more effect than just red meats, but if you have been a vegetable terrorist for quite a while, liver might not be very appealing. I know that my wife will not eat it regardless of how well I cook it.

KimInTheForest · « **Reply #3 on:** November 04, 2015, 02:38:43 pm »

Thanks for that suggestion Eric! I would have never thought of toasted malted barley - nor would I have known where to buy it. I'll go looking for that.

cheers,
kim

Cal · « **Reply #4 on:** November 05, 2015, 06:14:13 pm »

Km,
That really is a worry, what is your Doctor saying about it? Cal

KimInTheForest · « **Reply #5 on:** November 05, 2015, 09:08:27 pm »

Quote from: Cal on November 05, 2015, 06:14:13 pm

That really is a worry, what is your Doctor saying about it? Cal

I haven't seen my doctor yet about this, Cal, but will call and make an appointment tomorrow.

kim

Cal · « **Reply #6 on:** November 05, 2015, 10:17:39 pm »

Kim,
I would. Get some answers. Cal

beto · « **Reply #7 on:** November 06, 2015, 12:00:22 pm »

Kim-

It is very well documented that vitamin C aids Iron absorption and metabolism, in the gut. I used to have the opposite issue "high" ferritin iron. Folks with high iron (as w/hemochromatosis) are told to not take vita-c or, not to take it within 2 hrs of eating, especially iron rich foods. Therefore common sense might consider taking C with meals especially iron rich foods meat or veggie and yes, as said above, liver and organ meats are highest (since you are eating meat). From what I have studied on the subject, the C even helps with the "non heme" vegetable sources. My two cents. Now go take a walk in the forest

beto · « **Reply #8 on:** November 06, 2015, 12:04:32 pm »

Kim-

It is very well documented that vitamin C aids Iron absorption and metabolism, in the gut. I used to have the opposite issue "high" ferritin iron. Folks with high iron (as w/hemochromatosis) are told to not take vita-c or, not to take it within 2 hrs of eating, especially iron rich foods. Therefore common sense might consider taking C with meals especially iron rich foods meat or veggie and yes, as said above, liver and organ meats are highest (since you are eating meat). From what I have studied on the subject, the C even helps with the "non heme" vegetable sources. My two cents. Now go take a walk in the forest

KimInTheForest · « **Reply #9 on:** November 06, 2015, 12:16:29 pm »

Thanks beto. I have been taking Vit C with my iron supplement for that reason, and eating Vitamin C foods with my iron-rich meals. And I have been walking in forest.

kim

beto · « **Reply #10 on:** November 06, 2015, 12:38:11 pm »

Kim ...you are prob an expert on the subject for what you have gone through. It is "getting better all the time" . Your bod is just takin' it slow.

KimInTheForest · « **Reply #11 on:** December 03, 2015, 02:54:54 pm »

FINALLY!

At 18 weeks post-treatment (4 months EOT), my hemoglobin has finally climbed back up to the very bottom of the reference range used by my lab: 115 g/L.

(My Red Blood Cells had returned to normal range 4 weeks ago.)

My serum ferritin, however, is still dropping - presumably because my body is still grabbing it up to make more hemoglobiin and red blood cells.

My ferritin is now down to 19 mcg/L
4 weeks ago it was 21 mcg/L
9 weeks ago it was 41 mcg/L

Anything between 15-50 is "Probable Iron Deficiency"

I am eating red meat daily, and eating foods high in Vit C with my iron-rich meals, and taking an iron supplement plus vitamin C pill daily, and separating tea consumption from iron consumption (because the tannins in tea bind non-heme iron and make it unavailable to the body).

I think "patience" is the keyword here. I just have to let my body do what it needs to do to continue to rebuild my Hemoglobin and Red Blood Cells, and then my ferritin will stabilize (hopefully at a higher level).

kim

ricpark · « **Reply #12 on:** December 03, 2015, 04:40:55 pm »

Good news Kim, a little more time.
rich

KimInTheForest · « **Reply #13 on:** December 03, 2015, 08:42:10 pm »

Quote from: ricpark on December 03, 2015, 04:40:55 pm

Good news Kim, a little more time.
rich

Thanks Rich! I hope you're doing well these days post-treatment.

kim

Lynn K · « **Reply #14 on:** December 03, 2015, 11:59:57 pm »

Great news Kim

The scale my lab uses is 11.1 - 15.9 g/dL I am going to hazard a guess if mine was converted by multiplying by 10 that would be similar to your lab at 111 to 159 being reference range maybe they use g/cL.

Anyway mine for reference has been 13.8 which guessing again woudl be about 138 on your scale.

I have never had my iron tested by any of my doctors. That is weird you have that tested and I don't. Now I am curious where I am on that scale. Is that a separate lab test from CBC? I don't see ferritin on a CMP either.

Anyway hope you are feeling better
Lynn

What type of doctor do you see?

KimInTheForest · « **Reply #15 on:** December 04, 2015, 12:36:25 am »

Hi Lynn. Yes, I asked specially to have my serum ferritin tested post-tx because I felt so crappy and knew something was wrong. That's when I discovered how low I was in iron - and probably had been for a long time, maybe several years.

You're right that it isn't part of the normal CBC. Chances are, with your hemoglobin being so squarely in middle of normal range, and also with your swift 10-day recovery to get you hgb (or was it your red blood cells?) back into the normal range after ribavirin, that you aren't low on iron. I think if you were low on iron, your recovery from the hemolytic anemia would have been much slower, as mine has certainly been. But it never hurts to have serum ferritin checked - just to know what's going on. Some people here have the reverse problem of dangerously high iron.

And you're right, my hemoglobin numbers differ from yours by factor of 10 because of different units.

For my iron test, I am just seeing my GP. I have been seeing 2 different liver specialists before and during and post-tx. Neither of them seems concerned by my low iron and slow recovery of my hemoglobin and RBCs. But I will say I am finally feeling good. I guess getting my hgb back into normal range did it.

kim

Lynn K · « **Reply #16 on:** December 04, 2015, 02:01:03 am »

yeah it was my HGB

It went down to 9.7 so they dose reduced from 1200 mg to 1000 mg and I hung in at 10.1 with 10 being the min they wanted to see.

So I dragged myself to the finish line and yeah after 10 days my HGB was within normal range just a tad lower than before treatment and now solidly back to where it has been for a while my normal.

What test is for ferritin levels? Is it a separate test or part of a panel of tests like the CBC?

KimInTheForest · « **Reply #17 on:** December 04, 2015, 02:32:57 am »

Quote from: Lynn K on December 04, 2015, 02:01:03 am

What test is for ferritin levels? Is it a separate test or part of a panel of tests like the CBC?

It's just called "Ferritin" on my lab results, and is listed under "chemistry" under the heading "Chemical Investigation of Anemias and Iron Overload". It is a separate heading from the Hematology that has the CBC. I don't think a ferritin test is standard. It is only run if you or your doctor request it. I have also heard it called "serum ferritin" - I guess to distinguish it from tests for ferritin levels elsewhere than in blood. But on my lab results it just says ferritin.

I think Iron Binding Capacity is also important. But that test isn't being done on me. I am going in every 30 days for a ferritin test while it is so low.

kim

beto · « **Reply #18 on:** December 04, 2015, 11:58:56 am »

Of course I would end up chiming in on the ferritin question. Not standard, however, lots of physicians are adding it sometimes with a full iron panel. Yes binding capacity is important as is transferrin for some. Generally, for men over 40 and postmenopausal women to test for high iron and of course in the case of suspected anemia.

Hepatitis of every variety can, and often, create a temporary hemochromatosis. I had phlebotomies during my later hep C years as, my iron and ferritin especially was very high. I knew of many others that did plebs to lower ferritin numbers and ALT/AST went down with it. Ironically, perhaps for some Heppers the higher iron was helpful, that is until the virus was stopped by our little friends in the orange uniforms (I mean harvoni pills not the guys that 'come to take you away'

, I have also heard that hep keeps cholesterol down for many only to rebound.

My doc did a ferritin on my first tx labs. The drop was dramatic for me and a welcome number. For people like you guys that have tendencies the other direction (riba or not from riba) may find it to be an important test. But, Kim your right; hemoglobin and RBC and platlets are likely all that is needed for anemia.

Lynn K · « **Reply #19 on:** December 04, 2015, 04:01:52 pm »

Thanks Kim

Man with all the tests I have you would think I am tested for everything but apparently not. I used to get iron shots when I was a kid because they said my iron was low but I hear that was a common practice back then in the very early sixties.

So whenever I hear something about iron I guess my ears perk up. I know high iron can be a problem for people with cirrhosis but I have no idea where I am on that score. I am one of those post menopausal women Beto mentions nay e I should ask my general practice doc on my annual to check my iron.

But right now still trying to figure out how to and if I should get a chicken pox vaccine. They did not have the vaccine when I was a kid and I never had chicken pox.

Ah well best to all

Philadelphia · « **Reply #20 on:** December 04, 2015, 04:15:23 pm »

I'd like my platelets back. They're low - 70. Have been low and have bounced around a little for years due to complications from hep c, but still low, along with a low INR - 1.5. My HB is still only 112 and the so called normal range starts at 115 for me, so low too.

My specialist says everything else looks good and is thrilled by enzyme markers such as alt and ast, but says platelets and INR are a sign that my liver is still struggling on some level. Yeah, I have cirrhosis.

KimInTheForest · « **Reply #21 on:** December 04, 2015, 11:01:45 pm »

I hope your platelets and INR rebound for you Philadelphia! Now that you are cured, it is certainly possible as the damage starts to reverse itself.

kim

KimInTheForest · « **Reply #22 on:** March 10, 2016, 05:13:32 pm »

UPDATE: Well I have FINALLY figured out how to increase my serum ferritin from its long-term near-anemic level of 20 (reference range = 5-247). I just had to start taking a REAL iron supplement, the kind that is kept behind the counter at a pharmacy because it could be dangerous if misused, not a health food store iron supplement.

Once I started doing that (upon advice of my liver specialist), my serum ferritin quadrupled in 18 days! from 20 up to 86. I will continue to monitor it at 30-day intervals so I don't get too much. But at least that is one thing solved.

The amount I am taking (on doctor's advice) is 300 mg of ferrous fumerate 2x daily. And it is certainly getting the job done! Whereas my 6 months of daily red meat eating, reduced tea drinking, and health food store iron pills plus Vitamin C did ZERO to budge my iron.

Just to re-iterate: do NOT take an iron supplement unless you know for a fact your serum ferritin is seriously low and your doctor advises it.

cheers,
kim

beto · « **Reply #23 on:** March 10, 2016, 06:33:16 pm »

Good to hear Kim...hope it does the trick with all those symptoms you've been having. Funny because for years, I had to watch my iron overload and high ferritin numbers during the long bout with the illness. Then the Harvoni took it down in four weeks (I have written a lot about this). Anyway I got to thinking. It is known that pathogens love an iron rich environment. Lately there have been a number of speculative posts regarding HCV as potentially altering the Chemistry of the host to suit its needs (far fetched idea for many...but dig). What if our iron levels had been affected and somehow the virus lended a hand in absorption of iron over decades. Our bodies own regulating and metabolizing of iron might get used to the over active iron sustaining environment. Next thing you know, Hep C gone in a blink. Perhaps, and I am reaching on this one, some of our post TX issues have to do with our bodies being unresponsive to iron processes and taking a long time to recover that process. Pretty cool idea 'hey." The "hey" is cause you are Canadian.

KimInTheForest · « **Reply #24 on:** March 10, 2016, 06:42:12 pm »

Haha! That's funny about the "hey", Beto. because afaik... what Canadians say is "eh!". Millennials (And maybe Gen-Xers) say "hey". But what do I know. I am actually American, and it took me many years of living in Canada before saying "eh" even sounded remotely normal....

Yes, I have been following that theory on these forums about Hep C actually altering the host's chemistry to suit its needs over the years. I think there is some truth to that, which could go a long way to explaining the prolonged problems some of us have post-tx... With the sudden removal of Hep C from our bodies, our bodies need to alter back to a state they haven't known for 40+ years or they will have too much of this, too little of that...

It's fascinating and mysterious.

kim

HazelAustralia · « **Reply #25 on:** March 10, 2016, 08:51:15 pm »

Thanks for the tip about the real iron and getting ferritin levels checked Kim. I'm glad to hear that your iron levels are shifting in the right direction. I'm so literally tired of being anaemic - I've just finished treatment and my haemoglobin remains at 9. I was planning (after 40 years of being a vegetarian) to start making bone broth - it was the closest I could think of to being red meat enough, marrow-containing and I was also thinking that I could more of less disguise as vegetable soup or risotto or whatever. Just looking on here for some tips and found them!

KimInTheForest · « **Reply #26 on:** March 10, 2016, 10:14:28 pm »

Good luck Hazel. I too had been vegetarian for many years, so it was with great reluctance that I returned to eating red meat in the (mistaken) notion that it would help pull me out of my severe iron deficiency. In fact it had no effect on it whatsoever, after 6 months. At Else's suggestion I made a bone broth, and I have really been enjoying that. I think it is very healthy for many reasons - lots of minerals and nutrients. So I will probably keep that tradition alive. Maybe roast an organic chicken every week and make a broth out of all the bones and carcass.

But really, the trick to increasing low iron is just to get a strong enough iron supplement. The pharmacist wouldn't hand it to me until I confirmed that my iron was indeed very low and my doctor had told me to do this.

kim

Else · « **Reply #27 on:** March 11, 2016, 11:52:13 am »

Kim, I'm so glad they figured that out!!! Be judicious with that new energy that's coming your way.

KimInTheForest · « **Reply #28 on:** March 11, 2016, 02:30:19 pm »

Quote from: HazelAustralia on March 10, 2016, 08:51:15 pm

Thanks for the tip about the real iron and getting ferritin levels checked Kim. I'm glad to hear that your iron levels are shifting in the right direction. I'm so literally tired of being anaemic - I've just finished treatment and my haemoglobin remains at 9. I was planning (after 40 years of being a vegetarian) to start making bone broth - it was the closest I could think of to being red meat enough, marrow-containing and I was also thinking that I could more of less disguise as vegetable soup or risotto or whatever. Just looking on here for some tips and found them!

Hi Hazel. Be sure your iron (serum ferritin) is actually low before you start taking an iron supplement. If you simply have low hemoglobin from treatment that involved ribavirin, that does not mean your iron is low. Taking iron pills in that situation could hurt you by putting you into an iron overload situation. Just wanted to mention that since some people may not be aware that low hemoglobin from hemolytic anemia caused by ribavirin has nothing to do with iron levels in your body. But maybe you have also had your blood iron level tested?

all the best,
kim

KimInTheForest · « **Reply #29 on:** March 11, 2016, 05:16:51 pm »

Quote from: Else on March 11, 2016, 11:52:13 am

Kim, I'm so glad they figured that out!!! Be judicious with that new energy that's coming your way.

Thanks Else! I would love to start feeling that new energy anytime.

kim

Philadelphia · « **Reply #30 on:** March 12, 2016, 04:37:15 am »

good to hear you are feeling better, Kim!

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