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dropping hemoglobin when platelets drop

  • pam_dayton@hotmail.com
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11 years 11 months ago #41333 by pam_dayton@hotmail.com
dropping hemoglobin when platelets drop was created by pam_dayton@hotmail.com
I was wondering if anyone else has experienced a drop in their hemoglobin when their ITP flares? I have asked several health professionals and they say b/c they are drawing too much blood from me or it is the prednisone; I have only had blood drawn 2 times per week and only 2 small vials at a time; i am not aware that prednisone can cause anemia and find it hard to believe that you can drop your hemoglobin from blood draws?

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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11 years 11 months ago #41336 by Sandi
Replied by Sandi on topic dropping hemoglobin when platelets drop
That is a very typical thing with Hemolytic Anemia or Evans Syndrome. When one goes up, the other goes down.

Drawing blood should not affect any counts. Who on earth said that? Prednisone can cause white cells to go up or down but red cells do not normally drop.

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11 years 11 months ago #41337 by pam_dayton@hotmail.com
Replied by pam_dayton@hotmail.com on topic dropping hemoglobin when platelets drop
I did a quick calculation and would have to have lost almost 1000 ml to drop my hgb from "blood loss"-blood draws; that is certainly NOT the case; I'll keep asking :unsure:

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11 years 11 months ago #41340 by lwinning
Replied by lwinning on topic dropping hemoglobin when platelets drop
Hi Pam,

Back in 1998, I was diagnosed with TTP - Thrombotic Thrombocytopenia Purpura which caused low platelets and low hemoglobin (PLT 10, HgB 7). My LDH and Retic Count were also elevated. I was treated with high dose Prednisone which didn't bring up either count, and then hospitalized for IV Solumedrol and plasma exchange for 5 days. This worked -- and I have not had a recurrance of the TTP since.

I have had recurrence of ITP, though, and my hemoglobin has remained fine (13-14).

~Lauren

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  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
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11 years 11 months ago #41341 by dru
Blood draws or prednisone do not drop your hemoglobin. How low is your hemoglobin? If it is just a slight bit down it might not mean anything. If it is alot down, like under 10 they should do a retic count and LDH like Lauren mentioned.

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11 years 11 months ago #41345 by pam_dayton@hotmail.com
Replied by pam_dayton@hotmail.com on topic dropping hemoglobin when platelets drop
Hgb is 10.6 right now, not worrisome but seems unusual with ITP; hematologist is ordering LDH and retic count; you guys are one step ahead!

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11 years 11 months ago #41346 by Vdeutsch85
Replied by Vdeutsch85 on topic dropping hemoglobin when platelets drop
I was actually wondering about this. I've been having low hemoglobin for the past 4 months. My counts had been arounfd 150-160. Well my doctor said let's keep an eye on it since you are menstuating. Well it didn't go up the next time and he put me on iron supplements. Well I got checked yesterday my high was 13.5 and my platelets were 368. I'm dropping down to 12.5 mg of Promacta. I think it may have something to do with it. My friend has had a similar expereince. I wish there were studies on it.

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11 years 11 months ago #41349 by Ann
Blood loss from menstruating is known to be a cause of iron deficiency anaemia so why not constant blood draws? Blood draws twice a week is a lot as is two vials each time. That along with menstruating, if of that age, is a heavy blood loss.

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11 years 11 months ago #41370 by pam_dayton@hotmail.com
Replied by pam_dayton@hotmail.com on topic dropping hemoglobin when platelets drop
RBC's in normal range; Hgb down to 9 (down another 1 gram in 4 days; I don't have periods any more

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11 years 11 months ago #41373 by Vdeutsch85
Replied by Vdeutsch85 on topic dropping hemoglobin when platelets drop
My doctor was thinking that my low hemoglobin may have been from mensturation. However, he told me to keep an eye on it. Well I had 2 more CBC's where my hemoglobin was low where I was not on my period so my doctor ruled out theory. He put me on iron supplements. I went for CBC's on wed, which was the last day of my period and my hemoglobin was 13.5, which was the highest it's been in months and my platelet count was the highest it's ever been. ( reducing my Promacta since I was at 368). I wouldn't be shocked if there is a correlation between the two factors.

I went back into my CBC files. I was slightly low in hemoglobin for about 7 months. I think we all overlooked it since it wasn't critically low and my platelets were so low. When I brought this up to my local hema ( my specialist was the one that saw it) he said it was because I wAs a woman and that women have periods and that's why my hemoglobin was low. Knowing my own body, I knew my periods are light so I thought it absurd.

My new hema is a woman ( I moved to Phoenix) and she seemed genuinely concerned about it which I appreciate. She was very happy with the results and was wondering the same thing does having a higher hemoglobin level positively affect platelets?

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11 years 11 months ago #41380 by Ann
Hospital acquired anaemia (from blood draws) is real..

bloodjournal.hematologylibrary.org/content/122/21/1700

Did you also have your ferritin (iron stores) checked?

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  • Sandi
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11 years 11 months ago #41383 by Sandi
Replied by Sandi on topic dropping hemoglobin when platelets drop
You'd think they would have to draw a heck of a lot of blood though.

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11 years 11 months ago #41391 by Vdeutsch85
Replied by Vdeutsch85 on topic dropping hemoglobin when platelets drop
Ann,

I don't think they did check. I will ask next time. I have been doing monthly draws just 2 vials. I don't know if that would be enough to bring down my iron. I can ask about that as well.

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  • Sandi
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11 years 11 months ago #41395 by Sandi
Replied by Sandi on topic dropping hemoglobin when platelets drop
I don't think monthly draws would affect red cell counts. My Mom has had daily draws for a few months and her CBC is fine. She needed her INR tested daily for Coumadin level checks.

I've also had a lot of blood draws at times, sometimes 20 vials at a time. I didn't notice any problems. The body replenishes blood pretty quickly. I guess there are circumstances where too many blood draws might cause problems, but it probably doesn't happen often.

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  • Sandi
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11 years 11 months ago #41396 by Sandi
Replied by Sandi on topic dropping hemoglobin when platelets drop
Hey Dru - question for you. I know very little about AIHA, and I was curious about your comment that steroids do not affect the Coombs test. AIHA is caused by antibodies that target red cells, right? And if steroids are used as treatment and they work by destroying antibodies (like with ITP), wouldn't that then affect the test results?

I have been trying to determine how AIHA antibodies would be different than other autoimmune antibodies, and can't find anything. Over the years, the only test result that I've come across that steroids won't affect is the Lupus Anticoagulant. Usually when I don't understand something, I want to know the answer because it will drive me crazy if I don't get it.

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11 years 11 months ago #41397 by Ann
Sandi, you are right. Steroids can give a false negative for the Coombs test.

It says so here..

www.vcahospitals.com/main/pet-health-information/article/animal-health/coombs-test/295

I know it's an animal site but still.. LOL.

I had a positive Coombs test once, never did find out what it really meant.

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  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
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11 years 11 months ago - 11 years 11 months ago #41398 by dru
Sandi,
Yes you are right, if the prednisone put you in remission then you would have a negative coombs test. But I was responding to Pam who seems to not be responding well to prednisone so not in remission.

Last year I was on prednisone for 9 months and coombs was positive the whole time, the prednisone kept my hematocrit up enough so i could function, but it was never normal and i continued to have cell destruction and symptoms.

I think the very frequent blood draws as well as womens periods can affect hemoglobin levels somewhat. It is just much different than hemolytic anemia because it goes just a little low and stays more stable. Pam was talking about her hemoglobin being 10.5 which seems a little lower than itd be from blood loss...just my opinion based on 15 years of hemolytic anemia.

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  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
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11 years 11 months ago - 11 years 11 months ago #41399 by dru
Well that post by Ann makes sense too even though it is about animals. Hemolytic anemia is much more common in dogs than people. Somehow not a comforting thought for me :)


So i guess I have to ammend what I said and say that for me prednisone does not affect coombs test.


Sandi,

I guess, like in ITP it shouldnt matter that much whether the coombs is positve or not. Im not sure if it is done in titers like with ANA, i have always been just told positive coombs or negative. My dr told me the important counts are hematocrit, hemoglobin, and retic count. The retic count tells how many new rbcs you are making. My coombs was positive for a year after my splenectomy despite having all normal cbcs.

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  • Sandi
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11 years 11 months ago #41400 by Sandi
Replied by Sandi on topic dropping hemoglobin when platelets drop
Thanks for the article, Ann!

Anyone: Does the Coombs have titers or another measurement? The words 'positive' and 'negative' are pretty black and white, but could steroid use cause the antibody measurement to go down but still be present, or positive?

I'm thinking of the ANA as an example. Anything over 1:80 is positive. A person could have a titer of 1:1280 which is high, use steroids for a few weeks, get measured again, and be at 1:320. The titer would sill be positive, but lower and not as alarming. Some people don't think to ask the titer and generally, they are just told if they are 'positive' or 'negative'. The titer does matter though as it is taken into consideration for diagnostic purposes and disease activity.

Antibody tests for ITP don't mean much as far as the diagnosis or treatment, not like it does for AIHA. I've had an ITP antibody test and all I was told was that the result was 'a critically high presence of antibodies'. Did it matter? Not really. I guess if steroids had dropped the number of antibodies, however they were measured, it didn't really matter as long as platelets went up. I wonder if it's the same for AIHA.

I'm sort of just thinking out loud here. If anyone has any thoughts, feel free to speak. I'm curious.

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  • Sandi
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11 years 11 months ago #41401 by Sandi
Replied by Sandi on topic dropping hemoglobin when platelets drop

dru wrote: Well that post by Ann makes sense too even though it is about animals. Hemolytic anemia is much more common in dogs than people. Somehow not a comforting thought for me :)


I kept coming across animal sites too and couldn't find anything about humans. I don't know why I skipped over the dog info...just didn't see it as reliable and was determined to find something about people. Well that didn't work out so the dog info will have to do. I believe it would apply to humans too. We'll take it!

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  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
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11 years 11 months ago #41402 by dru
When I first had hemolytic anemia in 1999, the internet was not so sophisticated. The only online info I could find was from vet sites, mostly about dogs.

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  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
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11 years 11 months ago - 11 years 11 months ago #41403 by dru
Pam


9 is pretty low, when do ypu see the dr again? Are you having symptoms, tired, short of breath? Of course all that prednisone could be masking some symptoms.

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11 years 11 months ago #41407 by pam_dayton@hotmail.com
Replied by pam_dayton@hotmail.com on topic dropping hemoglobin when platelets drop
Lastest labs; plt=5-no change with 3 weeks of prednisone and rituxiab x 3 doses;Hct/Hgb and RBC Count continue to fall slowly; peripheral spear shows spherocytes;elevated Retic Count, Normal LDH and Iron Studies. I did read somewhere that prednisone is recommended for 4-6 weeks (but thought I also read that if you have not repsonded within 7-10 days, it is unlikely that you are going to respond; hematologist did agree to decrease down to 40/day for now;

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  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
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11 years 11 months ago #41414 by dru
Im glad you are getting to decrease the prednisone. It is good you are on rituxan treatments too as you mentioned they worked before. Rituxan can take a while to work. For me it helped with my ITP within a few weeks but took much longer with the AIHA, i didnt get any response until 8 weeks after the last infusion.

Has ypur dr been able to give you a definate diagnosis? Glad you can decrease the prednisone, 40mg is still a high dose.

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11 years 11 months ago #41431 by pam_dayton@hotmail.com
Replied by pam_dayton@hotmail.com on topic dropping hemoglobin when platelets drop
I am slightly symptomatic with the anemia; it is better this time (dropped from 13 to 6 in a week with my first episode-this time from 13 to 9 in about a month); no diagnosis yet; good to know the
rituxin can take a while; I was getting discouraged; it seems like it is best to be very patient with this disease and try to not get caught up in the numbers...learning every day

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  • dru
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11 years 11 months ago #41435 by dru
Yes, it can be very distressing. I had a recuurence of ITP in February 2013-and 3 months later my hemolytic anemia relapsed after 13 year remission from a splenectomy.

I was pretty much freaking out all last summer, my mental state made much worse by the prednisone. I was either on my couch or at the dr office for all of August. By the middle of Sept I was able to get back to work tho still had and even now have achy joints and muscles and easy fatigue.

Maybe your hemoglobin counts are not dropping so fast because of the prednisone. So your doctor wont call this hemolytic anemia?

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11 years 11 months ago #41456 by pam_dayton@hotmail.com
Replied by pam_dayton@hotmail.com on topic dropping hemoglobin when platelets drop
He said my direct coombs was negative (but I was on prednisone); the first time this happened to me, my direct coombs was positive (obviously not on pred at that time); last time they said something about my bone marrow bx not showing any signs of hemolytic anemia? since it is a RBC destruction process, would it make my bone marrow bx abnormal?

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  • Sandi
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11 years 11 months ago #41457 by Sandi
Replied by Sandi on topic dropping hemoglobin when platelets drop
ITP doesn't make the bone marrow show abnormalities, so I wouldn't think AIHA would either.

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  • dru
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11 years 11 months ago #41458 by dru
As my doctor explained it to me after my bone marrow biopsy, my results showed that my bone marrow was extremely hyperactive(I cant remember the term she used). I was making an extreme amount of reticulocytes. She said that was another indication that it was hemolytic anemia. So it is not exactly abnormal, but just working overtime.

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  • Sandi
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11 years 11 months ago #41461 by Sandi
Replied by Sandi on topic dropping hemoglobin when platelets drop
Dru:

Many doctors say the same thing about over-production of megakaryocytes and ITP. It's now known that it's not true. It may be true for AIHA, but I don't know for sure.

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