Hemoglobin & Platelets

Hello,

I am new to these forums -- but VERY glad I have found them -- and relatively new to ITP. I was diagnosed about seven months ago in August of 2011, and I am still going through treatment to stabilize my counts.

I was first diagnosed after a routine blood test following my yearly physical. I got a call later that night from a lab tech who seemed to be panicking and directed me to get to my nearest ER immediately due to extremely abnormal results of my blood work. As a 25 year old girl who has never even broken a bone, who had never been hospitalized, who very rarely took any sort of medication (except for the occasional ibpruofun -- not allowed anymore), to say I was freaked out would be an understatement.

I ended up being hospitalized due to two abnormal counts -- a low platelet count and a low hemoglobin count. My platelet count measured in at under 3k, which I'm sure you are all MORE than familiar with what constitutes a good or normal platelet count and what does not. My hemoglobin count measured in at under 4. For those that don't know, hemoglobin is a protein in the blood that transports oxygen in the body, and a normal female has a count of 12 - 15. In the days leading up to my hospitalization, I was feeling incredibly fatigued (I almost passed out while on few mile bike ride with my parents, something that I could have done very easily on a normal day), which I initially considered to be a side effect of a cold I was battling but learned was actually a side effect of the low hemoglobin. In fact, every doctor or nurse that read my chart commented that they had never seen a conscious patient with that low of a hemoglobin count -- because my body was just barely circulating enough oxygen to keep my conscious. This did not do anything to help ease that feeling of being freaked out.

To treat the low hemoglobin count, I was given two iron infusions and one blood transfusion while in the hospital. Since leaving the hospital, my hemoglobin has steadily hovered around 12 but has not dipped below 10. My platelets, well, they like to be all over the map.

A low hemoglobin count is not something that is associated with ITP, and it has always been one thing that my Hemo considers an outlier with my diagnosis. However, since my hemoglobin counts have maintained good standing for the past seven months, he doesn't really worry about it. I, on the other hand, can't help but wonder about this from time to time. My Hemo said it was possible that I had ITP for quite a long time and experienced abnormal bleeding for quite a long time, which could have resulted in the low hemoglobin count, but he has said this in a way that makes me think it isn't the best explanation -- like, the chances of that really being the explanation would be rare.

So, I'm curious (and clearly, I'm a talker -- sorry for the long post), did/has anyone else experienced this? If so, have you received a better explanation about why? I'm looking for a little piece of mind -- if piece of mind can be had.

Thanks!

Hi,

So what was your actual red blood cell count? Were you killing those off as well as your platelets? Oteherwise a slow intestinal bleed for a long time could cause it. Did you have ferritin level, in effect the iron stores, checked too?

Had you had any vaccinations? I had a reaction to a vaccination last year whereby I was killing off my white cells at a pace. My haematologist said that he had also had a patient who killed off his red cells after the same vaccination. It lasted a year apparently and then corrected itself.

Ann,

Thank you so much for the response!

I'm not sure what my actual red blood cell count was at the time I was hospitalized and had the low hemoglobin. I'd start becoming familiar with what the various parts of a CBC were until I started going in for bi-weekly blood tests at the clinic and would receive a physical printout of my CBC results. In the hospital, I never received that (and never thought to ask for it). I did have a low ferritin level in conjunction with the low hemoglobin, and my Hemo eventually prescribed over-the-counter iron tablets. However, I'm currently not taking them, because I haven't had an issue with hemoglobin or ferritin levels since being released from the hospital and according to my Hemo, taking the pills within 48 hours of a CBC can skew the results of the CBC (in terms of your hemoglobin and ferritin levels), and since I get my blood tested twice per week, I would only be able to take the pill once per week to avoid that skewing of results.

I do know I was not experiencing any internal bleeding upon hospitalization. Before they diagnosed me as having ITP, which they were hesitant to due because they wanted a diagnosis that would explain both the low hemoglobin and the low platelets, they ran me through nearly a full day of testing -- tons of body scans, heart monitors, x-rays, etc. -- so they could effectively rule out the possibility of internal bleeding.

I have not had any recent vaccinations. The last one I had was the third HPV shot, which was maybe three years ago?

Thanks for the help!

Did you have heavy periods prior to being diagnosed? If so, that could explain the low hemoglobin. If not, I'd look for other causes.

You could ask if they ran a Coombs test. That test looks for red cell destruction and can indicate Evans Syndrome or Autoimmune Hemolytic Anemia.

www.merckmanuals.com/home/blood_disorders/anemia/autoimmune_hemolytic_anemia.html

www.evanssyndrome.org/

Twice during my 11-1/2 years with ITP, my CBCs showed low Hgb and Hematocrit, and I was given another blood test for iron and iron-binding capacity, which I flunked. The first time (in 2004), my docs ordered an endoscopy and colonoscopy to make sure I had no internal bleeding. I didn't. This last time (last Dec.), the docs decided the endoscopy and colonoscopy didn't need to be repeated, but I had a stool test, which I passed. Both these times, I took iron supplements, which I didn't like, but both times, my Hgb and Hematocrit returned to normal. We don't know what caused the drops either time. I did have a massive nose bleed in the fall, and I was told that could have contributed to the low iron counts. My hematologist didn't think the low iron was terribly unusual in an ITP patient.

I had a very similar experience, my hemoglobin was normal when my original CBC was done(where in I was diagnosed with ITP) I had a period which lasted twelve days, and my blood was drawn twice a day for four days while I was hospitalized, during this time my hemoglobin dropped.

On the day where I was released from the hospital I was told that I had auto-immune hemolytic anemia and ITP, the combination as mentioned by Sandi is called Evan's Syndrome.

My hematologist (different from the doctors who diagnosed me) said on my first visit that he will not 'refute my diagnosis' right now but thinks because my hemoglobin has returned to normal, that it is possible that all of the bleeding and having blood drawn caused my hemoglobin levels to dip.

In any case, I would ask about 'Evan's Syndrome' and see what the doctors think...

Best of luck!

I like your doctor. Blood draws twice a day equate to fairly severe haemorrhaging and could well affect the haemoglobin.

What has happened to you since. Did you have Evans or ITP?

Ann:
I like my doctor as well, he is very patient with my paranoia(I wasn't always like this, but I was only diagnosed a month ago)

Still unsure about my diagnosis, obviously I am hoping for just ITP...or you know, neither

I see him again on Thursday, I will keep you posted on what he says.

Do you have experience with Evan's Syndrome?

Thank you to everyone for your responses! I apologize for not responding sooner. I've been away from my computer on vacation for a bit.

Sandi - I did have heavy and long lasting periods prior in the few months prior to being diagnosed, but I thought that was associated with the low platelet count of ITP. I definitely could be wrong, though. Also, my Hemo did run a Coombs test. To my knowledge, he has not mentioned Evan's Syndrome or Autoimmune Hemolytic Anema, but I will be certain to look into both of those and ask about them at my next appointment -- even if just to further educate myself.

Karen & Daneila - It is nice to know I'm not the only person who has experienced the low hemoglobin count with ITP. Since I haven't had a hemoglobin issue since my initial diagnosis, I think it has kind of been put on the back burner -- as compared to the ITP. Daniela, you are definitely not the only one with the medical paranoia. I was diagnosed over seven months ago, and while mine has lessened some, it is still there. Clearly, I'm obsessing about a hemoglobin count I had seven months ago!

I really appreciate all of the feedback everyone has provided!

Hi Jessmeyer, I too faced a similar sutuation last week. For the first time in my life my HB went down to 5.
All my life I have been on 12 or 13.
I recieved 2 bottles of blood and one week of hospitalisation and I was fine.
i recovered . thank god

jessmeyer:
I am glad your hemoglobin has stabilized and also that your medical paranoia is beginning to subside.

Ann:
Yesterday my count was 224 and my hemoglobin was normal, the hematologist says he can't be certain about the Evan's or ITP debate because I'm currently receiving treatment for both.
I may relapse with just ITP one day or with a low hemoglobin, or both--that is the only way to tell...so here's hoping that we do not figure it out for a while!

I am tapering and hope to be off prednisone in three weeks, and I hope for a long remission for myself and all of you!

Daniela

I have both ITP and Hemolytic Anemia - which is like ITP for red cells. Typically it is a seesaw - if platelets are up, hemoglobin is down, and vice versa, with the exception of 2 years ago when it all got going at once. Platelets were 3K, hemoglobin was 7. I had a blood transfusion which my immune system gobbled up in a week.

I have had the same experience with my platelets and neutrophils. When one goes up the other goes down. Mine isn't strictly Evans. The neutropenia was due to a vaccination and I'm hoping that that has now actually resolved but it's hard to tell if it's just up while my platelets are down or if it's simply normalised.

Yeah, my hematologist has never said I have Evan's. I wonder what the criteria is. LOL, for my previous hema, I wouldn't be surprised if she'd never heard of it. She could be dingy at times. Still liked her, but I had to keep her focused.

Just wanted to share some info. I dont have hemoglobin issues but I have noticed a direct relationship between eating beets and my hemoglobin going up.

I get my blood drawn so often that I try to eat different things and see how they affect my counts. Beets have been very consistent in moving my hemoglobin up a few points. Maybe try to include some beets in your diet. They are not the best tasting vegetable out there but good for your health

What's beets? Can you point me to a picture?

Picture (sort of ) and recipes. They are the purple or very dark pink root vegetables, golf ball size or larger. Sweet flavor. I hate them but they are beautiful.
Erica
www.foodnetwork.com/topics/beets/index.html

I wish I could eat Beets. I physically can't. I wish I could.

To keep my iron up, I take Floradix, it's a liquid iron and it doesn't give me the intestinal/stomach issues that the pill form gives. It worked in 6 weeks for me, last time, I went from 8 to 10 hemoglobin.

It's expensive and tastes vile, but I put it in a little berry juice and take it through a straw. But anything that works for me, is worth it.

Ah beetroot. Beets tend to make me think of sugar beet and I knew it couldn't be that. Love beetroot and it's supposed to be good for vitamins and antioxidants and things. Don't imagine it does anything directly for the blood but I could eat a fair amount of it.

Now I'm hungry for beets! I might have a can in the pantry. Easter is coming too.

I LOVE beets, but Steven won't eat them so we don't get them!

I'm an adult with Evans Syndrome. We have a rather large support group going on Facebook . Our blog is located here . We are also in the process of bringing our main website back up (we were down because we got hacked), and when it's out there, you'll be able to hit us here . We are the Evans Syndrome Community Network. We consist of people all ages, from all over the world. If you need help, want to ask questions, or just want to lurk, feel free to join us.

~Peace~

Actually Palemoon Twilight, you're just a spammer. It's really annoying to come to the forum and find a million posts all saying the same thing. Off you go and spam elsewhere.

Ann have you informed admin - or clicked on the Report to moderator button?

I saw it. I deleted most of them, but left them where Evans was discussed. It did look like a valid link to an Evans support group, although I don't know why she had to overdo it with all of those links. Makes them look bad.