Question : Is it possible for a normal... - ITP Support Assoc...

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JennaShi profile image
18 Replies

Is it possible for a normal person to have consistent, low but not terribly low platelet count levels? I was told this by a Rheumatologist. Also a 40% platelet drop is normal.

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JennaShi profile image
JennaShi
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18 Replies
Ash24601 profile image
Ash24601

I’m here for the same reason, I was told that the “low” is my “normal” and as long as they don’t continue to drop I should be fine. I’ve started getting random bruises again though.

JennaShi profile image
JennaShi in reply toAsh24601

Its nice to meet someone in the same situation, although unfortunate. Have you tried graphing your platelets against any of your other results? This is how we found out that my platelets line up with my lymphocyte count and not thyroid levels.

Do you have a high MPV or have you by any chance?

exxxon profile image
exxxon

interesting Q .. I have been in a range of 65k / 85k for the past 11 years and they told me it was normal for me ( pure insanity ) in November I went into the low teens and now on meds to maintain the 45 / 50 range .. low platelets is not normal bro, its deadly .. jimmy ..atlantic city n j

jjjamesholder profile image
jjjamesholder in reply toexxxon

My platelets stay 35K to 45K per cubic millimeter of blood. Ten years ago I got down to 14K I had my spleen removed. Platelets stayed about 35K after that. I have an occasional drop down to a danger level of 14. I know I am down low when I see large bruising. Then I get a blood test. I take some prednisone and it goes up to above 35K then settles back down to 35K.

Last year I tried Promasca. Platelets went to 120K. I then started half a dose and Platelets went to 60K. I stopped taking Promasca and platelets went to 45K and stayed there. Promasca can have terrible side effects. Since I was staying at 45K I stopped taking Promasca and have been at 45K from then on. If necessary I will take promasca again, but the side effects can give you cancer. I live a totally normal life with 45K I would not get worried unless it went below 30K.

Of note, I eat pumpkin pie filling with cinnamon and honey. One heaping tablespoon a day. I think it helps my platelet count. I also drink Fiji water. Fiji water will flush metals from your body. You know that tin and sulfur will make platelets go down low, even cause ITP. Even the tiny amount of sulfur in prescription eye drops will lower platelet counts some.

A large dose of sulfa to combat an infection may have started my ITP problem. I was on a cruise ship and the only antibiotic they had was sulfa. After the cruise, I did not take the sulfa as required in many small doses. I did it too myself when I took a large dose of sulfa. Of note, our own behavior causes many of our health problems.

exxxon profile image
exxxon in reply tojjjamesholder

jjjames ... I am also holding 45 / 50 count with 50mg. promacta and 300mg danazol ... promacta works for me and no side effects .. doctors say it is safe and doesn't cause cancer .. stay with the promacta bro ... jimmy

jjjamesholder profile image
jjjamesholder in reply toexxxon

Glad the medications are working well for you. I like to take as little medication as I can. God be with you.

exxxon profile image
exxxon in reply tojjjamesholder

where did you see promacta causes cancer ?? jimmy

JennaShi profile image
JennaShi in reply toexxxon

I agree with you, were you able to find out that it was ITP then to confirm?

Gizyg profile image
Gizyg

Hello

I was told the same if platelet count is low but it's not going below 90000k or so it could be ur normal however very low platelets isn't normal

How low r your platelets?

jjjamesholder profile image
jjjamesholder in reply toGizyg

I believe low platelets avoid inflammation and clogging of blood vessels. I have only found one doctor that will agree with me on that. 90K is a comfortable level to live with. I am at 45K and doing fine.

JennaShi profile image
JennaShi in reply toGizyg

Hi, mine have not yet gone below 100,000. Now obviously its not as bad as those who responded and those on the group. Etc. however, I have noticed that my platelets drop when my lymphocytes spike. And we were able to graph this and I don’t believe this is normal or commonly seen in a “normal” person, as my platelets were normal and in range two years ago.

Gizyg profile image
Gizyg

mine are 100000 k

Depends what you mean by low & normal

Very low platelets was normal for me, like 7 to 20 platelets per unit of blood, but that meant I DID have ITP. But I didn’t require treatment (and those treatments they did try didn’t work) (Under haematology)

Fast forward twenty years, I now have another auto immune disease and the drugs for that are lifting my platelets count.(Under rheumatology)

I wouldn’t want you to take these drugs unless you really had to, they’re horrid!

JennaShi profile image
JennaShi in reply toalice_sportyauthor

Hi, glad to hear that the medicine you are taking is raising your platelets but am sorry to hear about your autoimmune diseases.

Referring to your last statement, I am not making a big a deal about it for medication. I simply want to figure out whats going on. I dont want to keep repeating myself, so to be more specific I posted a comment above that explains in more detail what is going on

alice_sportyauthor profile image
alice_sportyauthor in reply toJennaShi

No I don’t like medication either, but now I can’t avoid it.

Ltinny profile image
Ltinny in reply toJennaShi

I have lupus and started out with platelets of 111 which for lupus patients is expected. After about 10 years my count dropped steadily to a low of 37,000. At that point my rheumatologist wanted me to consider Rituxan. I refused. I had no symptoms except some bruises here and there, no nosebleeds, no bleeding gums or any other bleeding. She told me if they got to 30,000 I would need treatment. I'm already taking enough medications and didn't want to add more.

I tried papaya leaf extract and the platelet count still fell. I went to see a hematologist to rule out any other condition. It was just my own body fighting my platelets.

Out of anxiety and insomnia over all of this and other things, I started taking melatonin at night to help me sleep. I don't know if this was a coincidence or not, but after taking melatonin for 6 months my next platelet count was up into the high 80s. I continue with melatonin and my count last week was 113,000.

As well, even when my platelets were about 60, I had a tooth extracted and had no more bleeding than I would have otherwise. Just sharing my experience with the melatonin. It could be a coincidence, but they have continued to increase and not decrease.

Gizyg profile image
Gizyg

What do ur doctor say about ur low platelets

JennaShi profile image
JennaShi in reply toGizyg

Hi Gizyg, I guess it depends on which doctor you ask. My new problem as well as my past primary don’t know. Previous Rheumatologists claim its normal. However after graphing my platelet results with other results, we’ve found that they line up with my lymphocytes. Anytime lymphocytes spike, my platelets drop. Mpv has always been high and we don’t think that this is normal. My primary has said this is common in the acute phase of EBV, but I am not in the acute phase and I think she sees these things and agrees that something is going on.

Ive been referred to a hematologist of my choice with the diagnosis of “Thrombocytopenic disorder” with the hopes that he will be able to make more sense of this. We’ve also discovered that I have polyclonal gammopathy, and recently have tested negative for anti- platelet antibodies.

So ai guess after a long paragraph, to answer your question, she is not sure but we are hopeful for more information in the future.

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