Hemolytic Anemia

[CureSeeker]

When I first started treatment with Sovaldi and Ribavirin, the Ribavirin caused me to become anemic - severely anemic.  During the last couple of weeks of treatment I told my hepatologist that I felt like the Riba was killing me...at any rate...

12 weeks post treatment, I am still waiting for my hemocrit to get back in order, but I showed and felt improvement with the anemia immediately. 

Not all anemias are the same.  When I first became anemic early in treatment my GP told me to eat liver.  Later, the hep doc told me hemolytic anemia is not caused by an iron deficiency.

What a relief.  I hate liver, lol.  Sadly for some of us - we just have to ride it out while on treatment, and after treatment we can look for cures to specific problems as they arise.

If you research hemolytic anemia, you will see no suggestions of iron supplements, because it doesn't fix a problem centered in your bone marrow.  Your spleen becomes the villain that traps and destroys your red blood cells.

Here's one site that discusses it - but it lists all the causes and not just certain medications like Ribavirin or certain conditions like Hepatitis or Sickle Cell Anemia.

http://www.healthline.com/health/hemolytic-anemia#Overview1

Too much iron can be bad for our livers, so it would probably be a good idea to find someone knowledgeable - maybe a hemotologist - to consult to fix a problem.

Sometimes it just requires giving your body the time to eliminate the drug that caused the issue in the first place.  I've read estimates that range from 6 months to more than a year when it comes to my Ribavirin.

This has been a Public Service Announcement by Your Local Nuts and Berries Girl and Vitamin/Supplements Chemistry Project Board.

[KimInTheForest]

Hi CureSeeker. I too took a long time for my hemoglobin and red blood cells to get back into the normal range after my 12 weeks of Harvoni+ribavirin. 14 weeks post-tx before red blood cells were back at bottom of normal range, and 18 weeks post-tx for hemoglobin to get there. So yes, it does take some of us much longer than others to recover from the effects of the ribavirin.

In my case I actually was iron deficient, which did not help. Not from the ribavirin but from separate circumstances. I probably had been iron deficient a long time before starting treatment. Although ribavirin does not cause iron-deficient anemia, I think anyone who cannot speedily rebuild their hemoglobin and red blood cells after ribavirin should have their serum ferritin checked in case it happens to be deficient as mine was. (But don't take iron supplements unless you know for a fact that you are iron deficient.)

B12 deficiency can also slow the body's ability to manufacture red blood cells. So it is worth getting a B12 test and, if necessary, taking B12 sublingual tablets to bring your B12 up to a better level.

There were a couple of studies done that showed that anti-oxidants (Vitamins C & E) or foods rich in carotenoids would slow the onset of hemolytic anemia while on ribavirin, and lessen the degree of hemolytic anemia. I don't know if those substances would help rebuild red blood cells post-tx. But they might.

Good luck. And you're right - it does just take time for the body to sort itself out and clear the ribavirin post-treatment.

kim

[Royeri_78]

These are very informative things which everyone should know about Anemia. Thanks a ton for sharing complete details. I am working at an acupuncture clinic and have treated various patients. It’s among natural ways to treat such health problems.

[CureSeeker]

Thanks Kim.

I'm glad you found it helpful, Royeri_78.


I had a scare right after treatment ended.  I had the tiniest of wounds that was leaking like a sieve.  My blood was thin as water and a lighter than its normal burgundy color, and the pinhole size wound would not stop bleeding for 48 hours.  You can imagine how scary it is to think, "What if I sustained a significant wound??!!", since this insignificant one was causing such a problem.

Not wanting to have it cauterized, I did a little research, after applying a spot bandage, and wrapping that in an ace bandage around my thigh to hold constant pressure.  It made sense to me, since I knew the Ribavirin was the source of my hemolytic anemia, to see if it affects the bloods ability to coagulate, and I found evidence that it did.

I found a site that said Ribavirin can block the bodies absorption of Vitamin K.  Vitamin K is essential for blood coagulation.  So, I used a vitamin D3 complex in combination with a vitamin K complex. 24 hours later, I was coagulating again.  YAY!

Here's an article from Mercola.com about Vitamins D & K:

http://articles.mercola.com/sites/articles/archive/2011/03/26/the-delicate-dance-between-vitamins-d-and-k.aspx

They are miracle vitamins, albeit, vitamin D isn't really a vitamin, lol.

I can't stress enough how much people NEED to consult their doctors before doing anything that involves upsetting their medication doing its job. 

I'm NOT a doctor, and take full responsibility for experimenting on myself - but, ANYONE else should be responsible enough to at least consult their doctor before taking chances with their health.

What helps one person can be harmful to someone else.  Be safe!

[HazelAustralia]

Hi all,

I've also been looking at ways to build up my red blood cells. On a separate but related note, I wondered if people may be interested in this article, about chronic disease related anaemia. For me, it spoke about how what was happening before the treatment, the treatment itself and the period post-treatment can have such complex (and fascinating) interactions. But also, that I want to be very confident that my GP is checking each part of my overall iron and responding to that picture. It's a very important time for us, post treatment. Anyway, I hope someone finds it of interest and I would be interested in any of your responses, critical readings or other:
http://www.irondisorders.org/anemia-of-chronic-disease

Best,

Hazel

[KimInTheForest]

Hi all,

I've also been looking at ways to build up my red blood cells. On a separate but related note, I wondered if people may be interested in this article, about chronic disease related anaemia. For me, it spoke about how what was happening before the treatment, the treatment itself and the period post-treatment can have such complex (and fascinating) interactions. But also, that I want to be very confident that my GP is checking each part of my overall iron and responding to that picture. It's a very important time for us, post treatment. Anyway, I hope someone finds it of interest and I would be interested in any of your responses, critical readings or other:
http://www.irondisorders.org/anemia-of-chronic-disease

Best,
Hazel

That is a very interesting article, Hazel. Thanks for sharing it. I printed it out. It doesn't seem to fit my profile of iron deficiency and anemia. But I am going to ask my doctor to test me for more than serum ferritin, which I have been getting done monthly since finishing treatment because I am taking 600 mg of iron daily and getting no increase whatsoever in my serum ferritin. (It is just 20 ug/L; ref range: 5-247.) My hemoglobin has been correspondingly low, and I am quite anemic but cannot pull out of it. I am going to ask for the transferrin test, iron binding capacity, and total iron saturation, and maybe that C-reactive protein test. Maybe with all of this info, we can pin down why I cannot absorb or retain iron. (I had the fecal ferritin test and that came back negative, fortunately. So at least I can rule out iron loss from a GI bleed.)

I just want to remind anyone else reading this thread that the hemolytic anemia induced by ribavirin is NOT iron-deficient anemia, so iron supplements should not be taken for that. It could be dangerous. But in my case, I had BOTH the hemolytic anemia from the ribavirin AND iron-deficient anemia from unknown cause, hence the iron supplements in my case.

Wellness to all,
kim

[CureSeeker]

Hi all,

I've also been looking at ways to build up my red blood cells. On a separate but related note, I wondered if people may be interested in this article, about chronic disease related anaemia. For me, it spoke about how what was happening before the treatment, the treatment itself and the period post-treatment can have such complex (and fascinating) interactions. But also, that I want to be very confident that my GP is checking each part of my overall iron and responding to that picture. It's a very important time for us, post treatment. Anyway, I hope someone finds it of interest and I would be interested in any of your responses, critical readings or other:
http://www.irondisorders.org/anemia-of-chronic-disease

Best,

Hazel

Thanks Hazel, that's a fine complimentary article to the subject matter. 

[CureSeeker]

... in my serum ferritin. (It is just 20 ug/L; ref range: 5-247.) My hemoglobin has been correspondingly low, and I am quite anemic but cannot pull out of it. I am going to ask for the transferrin test, iron binding capacity, and total iron saturation, and maybe that C-reactive protein test. Maybe with all of this info, we can pin down why I cannot absorb or retain iron. (I had the fecal ferritin test and that came back negative, fortunately. So at least I can rule out iron loss from a GI bleed.)

Hi Kim,

I'm sorry this is such a worry for you.  I think the healthiest thing we can all do is not worry too much about anything.

From what you have posted, you may not have the highest serum ferritin on the planet, but at 20, you don't seem to qualify for deficient either, from what I have been reading.  Being low on the scale doesn't mean you are technically too low.  From the photos I have seen of you, you aren't a 15 year old, nor do you seem to be a particularly large female in either height or girth, but photos can be deceiving.

There are plenty of other conditions and deficiencies that mimic the symptoms of anemia.  Heck, stress and non-optimal diet can mimic the symptoms of anemia.

The following tests are used by doctors in the US to determine if someone is anemic. 

Laboratory Test Value -

Ferritin <15 ug/L
Serum transferrin receptor concentration (TfR) >8.5 mg/L
Transferrin saturation <16%
Mean cell volume (MCV) <82/85 fL*
Red cell distribution width (RDW) >14%
Erythrocyte protoporphyrin (FEP) >70 ug/dL

* <15 yrs/>15 yrs of age

Source: Centers for Disease Control and Prevention. Recommendations to prevent and control iron deficiency anemia in the United States. Morb Mortal Wkly Rep 1998; 47:1-29.

I would have them all done, then take the findings to a well-recommended hematologist.  Someone that specializes in the study of blood and blood diseases, if you aren't currently seeing one.

The best iron you can get comes from meat.  Heme-iron is the easiest for our bodies to absorb naturally and is obtained from meat.  Because of this fact, a vegetarian diet containing non-heme iron isn't optimal, if someone suspects they have an iron problem.

I'm also not sure you are that far ahead of me in treatment to have fully cleared the effects of ribavirin remaining in our systems.  I know I haven't.  I'm no longer anemic by hemoglobin, but my last tests showed my hemocrit was still a bit off.  I'm taking it slow.  My six month labs are coming up next month.

I feel a lot better overall.  My brain is back on point, and although I do get fatigued a bit, it really doesn't compare to the fatigue I experienced before or during treatment.

If the results come back that you are adequate for your height and weight, then that gives you peace of mind, and allows more attention and energy to be focused on your Mom.

Best wishes, Kim.  I hope there is nothing really wrong with you, but as I said, there are a cornucopia of issues that mimic anemia, so a blood disorder doesn't HAVE to be one of them.

Btw, you may very well have a serious problem, and I'm no medical professional, but piece of mind in regard to one's health is priceless.

There is an old saying, "No matter what, we ain't getting out of it (life) alive, so you might as well be happy!"

I hope you can find a place that is comfortable and you can be happy, even if its only momentary.

Peace, CureSeeker.

[KimInTheForest]

CureSeeker: The "reference range" for any lab test does not denote either "normal" or "healthy", although doctors rather sloppily will often interpret it that way. It just means that if you fall outside of the reference range you may need a trip to emergency. Having a serum ferritin of 20 for months or years on end is not healthy for anyone. It guarantees sub-optimal health. My goal is not simply to survive and stay out of the ER ward. All of us should be aiming higher than that. My goal is to thrive and achieve optimal health. My extremely low serum ferritin (which is keeping my hemoglobin below the reference range, since my body does not have enough iron to manufacture enough hemoglobin) will absolutely have to rise before my health improves. And believe me, it is no fun living with the symptoms of anemia, which are with me every day and have been for close to a year now.

kim

kim

[CureSeeker]

You are the expert of you, Kim.  I personally wouldn't have it any other way.

My thread is specifically about hemolytic anemia, which as you are well aware, a lot of people who take ribavirin, or drugs that contain ribavirin, suffer from. 

I'm sorry if my suggestions may have disturbed you in some way.  I'm a Sagittarius - we seek knowledge.  We long for wisdom.  One trait Sag's have is being blunt and honest, and its not a trait that will endear the Sag to many people, lol.

I welcome anyone's contribution to this thread, but, the undeniable main focus of my thread is to allow people who are suffering from hemolytic anemia to understand that taking iron in response to that diagnosis will not help them and could harm them.

My own GP made that same mistake.  I didn't even understand there was a difference in anemias before my hepatologist discussed the results with me long after my visit to my GP.

Have a nice night.

CureSeeker






 

[KimInTheForest]

I welcome anyone's contribution to this thread, but, the undeniable main focus of my thread is to allow people who are suffering from hemolytic anemia to understand that taking iron in response to that diagnosis will not help them and could harm them.

Yes, which is why I add that caveat to everything I post about iron deficiency here on this thread and elsewhere. Ribavirin-induced anemia (hemolytic anemia) has nothing to do with iron deficiency, and people should not take iron pills for hemolytic anemia. I have already said that twice on this thread. I always say that so people don't run off and start popping iron pills for hemolytic anmeia. But they may also have iron deficiency anemia compounding their hemolytic anemia, in which case they DO want to take iron pills. So it is important to investigate the full nature and cause of one's anemia (as I have done and am continuing to do in my case), in order to treat it properly.

kim

[CureSeeker]

But they may also have iron deficiency anemia compounding their hemolytic anemia, in which case they DO want to take iron pills.

Well, I don't agree with you here, Kim.  If someone has a problem they DO want to tell their doctor.  There are numerous conditions, like Crohn's Disease or even benign polyps (just 2 of many examples), that can be THEIR problem, and have nothing to do with a true iron deficiency.

I am happy you and your doctor have come to the conclusion that iron supplements are the best route for YOU to take.  I am not making any effort to change your mind on that, but I think you would agree that everyone is different.

Certainly anyone suffering from properly diagnosed iron-deficient anemia, with their doctors recommendation, should DO as you are doing.

And anyone who isn't suffering from that, shouldn't.

[KimInTheForest]

Certainly anyone suffering from properly diagnosed iron-deficient anemia, with their doctors recommendation, should DO as you are doing. And anyone who isn't suffering from that, shouldn't.

The only way to know one has iron deficient anemia is with with proper diagnosis involving blood tests and a doctor. So really, anyone who knows they have iron-deficient anemia has a case of "properly diagnosed iron-deficient anemia". That part goes without saying, it seems to me (although I have many times said on these forums: don't take iron pills unless  doctor tells you to).

kim

[CureSeeker]

Kim,

As you are clearly very focused on iron-deficient anemia, and clearly feel your views on it hold extreme value to the Hep C community, perhaps you would like to make a thread on the topic?

I'm sure everyone would find your experience with that issue very helpful.