Aa
Brainstorming please - Why won't my blood clot?
I had my platelets tested and they were in the normal range, but my blood is most definitely not clotting properly.
I cut my thumb yesterday (tiny cut) and it keep bleeding quite profusely, relative to the teeny size of the cut, for 24 hours. Definitely not normal.
I am also having periods that last 3 weeks, then I get a week or 2 weeks off, then period again. The bleeding is heavy. I am eating heaps of liver and beef and also the blood test showed my iron reserves area bit low, but my red blood cells are in the lower end of normal range. So again, nothing explanatory there either.
And finally, I had my thyroid checked and that was also in range (I take a low dose of thyroid and wondered if the periods could be connected with needing a higher dose, but apparently not)
Well, anyone know anything about any of this?
The Lyme doc has ordered blood tests immediately and I'm waiting for the phials to come from Germany, meanwhile I am not very happy about this.
I really want this sorted out and so I need to know what is going on.
Hmmmmm.
I cut my thumb yesterday (tiny cut) and it keep bleeding quite profusely, relative to the teeny size of the cut, for 24 hours. Definitely not normal.
I am also having periods that last 3 weeks, then I get a week or 2 weeks off, then period again. The bleeding is heavy. I am eating heaps of liver and beef and also the blood test showed my iron reserves area bit low, but my red blood cells are in the lower end of normal range. So again, nothing explanatory there either.
And finally, I had my thyroid checked and that was also in range (I take a low dose of thyroid and wondered if the periods could be connected with needing a higher dose, but apparently not)
Well, anyone know anything about any of this?
The Lyme doc has ordered blood tests immediately and I'm waiting for the phials to come from Germany, meanwhile I am not very happy about this.
I really want this sorted out and so I need to know what is going on.
Hmmmmm.
Best Answer
Thank you for this information -- it sounds like others I have heard of with similar symptoms. Will pass the data along --
Hope you will visit with us again here.
Hope you will visit with us again here.
Hi,
I read your post and am sending this directly to you as the post is a couple of years old.
I will post it there as well.
In part you stated " I had my platelets tested and they were in the normal range, but my blood is most definitely not clotting properly.
I cut my thumb yesterday (tiny cut) and it keep bleeding quite profusely, relative to the teeny size of the cut, for 24 hours. Definitely not normal.
I am also having periods that last 3 weeks, then I get a week or 2 weeks off, then period again. The bleeding is heavy. I am eating heaps of liver and beef and also the blood test showed my iron reserves area bit low, but my red blood cells are in the lower end of normal range. So again, nothing explanatory there either.
And finally, I had my thyroid checked and that was also in range (I take a low dose of thyroid and wondered if the periods could be connected with needing a higher dose, but apparently not)
Well, anyone know anything about any of this? "
* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *
I may know what your problem is, or what part of it could be.
When you mentioned your period I took notice.
I had really heavy periods and not a lot of time between them.
You stated you bled a lot when you had a caesarian section.
So did I.
When I got cut I bled and bled.
However, I didn't go to the doctor until the day I bled thru 2 thick menstrual pads,my underwear, and my pants.
It had to happen at church, at a friend's mothers funeral.
Enough was enough.
My doctor didn't know what was wrong, as usual.
Many tests didn't show anything either.
Last among these tests was an internal ultrasound.
The woman doing the exam told me that saw nothing while doing the exam, but when she took the instrument out, I bled all over the exam table, I was lying on.
Really bled all over it.
I was now officially scared.
After this happened my doctor sent me to a gynecologist she knew, for suggestions.
He listened to my story and decided a biopsy might help.
When he did a pelvic exam he said, no need for you to have a biopsy, you have polyps.
They are benign growths that can grow inside the uterus and bleed a lot.
I had a couple, at least, that he could see sticking out of the uterus.
The entrance muscle was squeezing them and causing a lot of bleeding.
He told me almost every woman gets them if they live long enough.
Most are small and not a problem.
I was unusual to have these at my age.
I scheduled my surgery to remove them.
When it was over the doctor came to see me and told me I had small, medium, and large polyps, which is very rare.
All the interns had to see them so they could recognize them in the future.
Lucky me.
The good news is my blood work returned to normal, I suddenly had very light periods of normal length, and when cut I bled a bit, but nothing like before.
I doubt most doctors would think of this as possibly being your problem.
Probably because they think you just have heavy periods and haven't heard of this kind of polyps and the bleeding they can cause.
Anyway, this may be your problem or a part of your problem.
I certainly never knew about this kind of thing and neither did my female doctor.
I hope you have this checked out.
* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *
A bit more information follows.
Bleeding causes the main symptom of thrombocytopenia, which may materialize suddenly or over time.
A bleeding issue can also gush into view as heavy menstrual flow.
This could account for low or low normal amounts being present when you are tested.
For a quick summary of thrombocytopenia, what can cause, and help for it, go to the link below.
http://www.healthblurbs.com/thrombocytopenia-causes-low-blood-platelet-heavy-bleeding-symptoms-thrombocytopenia-treatment/
For a quick summary of what a heavy menstrual flow is, what can cause it, and some help, go to the link below.
http://www.healthblurbs.com/heavy-excessive-menstruation-and-painful-cramps-periods-causes-for-natural-relief-treatment/
* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *
For medical information on problems, information on medicine and interactions, well ... everything and more than you could possibly want or need is on the web site below.
www.drugs.com supplies information to doctors, other medical specialists, and regular people.
For those who want ALL the information, including pictures of pills in a pill identifier, who really made them and where (most in China and India), has your pill been recalled and how many times.
There are reviews of drugs, written by the people who took them.
www.drugs.com is much better than any of the other medical sites online.
I checked out a huge number of them, Wed MD, Harvard ..., lots and lots of then.
The one below is 1000 percent better than any other in content.
http://www.drugs.com
Once you try them the rest are history.
I read your post and am sending this directly to you as the post is a couple of years old.
I will post it there as well.
In part you stated " I had my platelets tested and they were in the normal range, but my blood is most definitely not clotting properly.
I cut my thumb yesterday (tiny cut) and it keep bleeding quite profusely, relative to the teeny size of the cut, for 24 hours. Definitely not normal.
I am also having periods that last 3 weeks, then I get a week or 2 weeks off, then period again. The bleeding is heavy. I am eating heaps of liver and beef and also the blood test showed my iron reserves area bit low, but my red blood cells are in the lower end of normal range. So again, nothing explanatory there either.
And finally, I had my thyroid checked and that was also in range (I take a low dose of thyroid and wondered if the periods could be connected with needing a higher dose, but apparently not)
Well, anyone know anything about any of this? "
* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *
I may know what your problem is, or what part of it could be.
When you mentioned your period I took notice.
I had really heavy periods and not a lot of time between them.
You stated you bled a lot when you had a caesarian section.
So did I.
When I got cut I bled and bled.
However, I didn't go to the doctor until the day I bled thru 2 thick menstrual pads,my underwear, and my pants.
It had to happen at church, at a friend's mothers funeral.
Enough was enough.
My doctor didn't know what was wrong, as usual.
Many tests didn't show anything either.
Last among these tests was an internal ultrasound.
The woman doing the exam told me that saw nothing while doing the exam, but when she took the instrument out, I bled all over the exam table, I was lying on.
Really bled all over it.
I was now officially scared.
After this happened my doctor sent me to a gynecologist she knew, for suggestions.
He listened to my story and decided a biopsy might help.
When he did a pelvic exam he said, no need for you to have a biopsy, you have polyps.
They are benign growths that can grow inside the uterus and bleed a lot.
I had a couple, at least, that he could see sticking out of the uterus.
The entrance muscle was squeezing them and causing a lot of bleeding.
He told me almost every woman gets them if they live long enough.
Most are small and not a problem.
I was unusual to have these at my age.
I scheduled my surgery to remove them.
When it was over the doctor came to see me and told me I had small, medium, and large polyps, which is very rare.
All the interns had to see them so they could recognize them in the future.
Lucky me.
The good news is my blood work returned to normal, I suddenly had very light periods of normal length, and when cut I bled a bit, but nothing like before.
I doubt most doctors would think of this as possibly being your problem.
Probably because they think you just have heavy periods and haven't heard of this kind of polyps and the bleeding they can cause.
Anyway, this may be your problem or a part of your problem.
I certainly never knew about this kind of thing and neither did my female doctor.
I hope you have this checked out.
* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *
A bit more information follows.
Bleeding causes the main symptom of thrombocytopenia, which may materialize suddenly or over time.
A bleeding issue can also gush into view as heavy menstrual flow.
This could account for low or low normal amounts being present when you are tested.
For a quick summary of thrombocytopenia, what can cause, and help for it, go to the link below.
http://www.healthblurbs.com/thrombocytopenia-causes-low-blood-platelet-heavy-bleeding-symptoms-thrombocytopenia-treatment/
For a quick summary of what a heavy menstrual flow is, what can cause it, and some help, go to the link below.
http://www.healthblurbs.com/heavy-excessive-menstruation-and-painful-cramps-periods-causes-for-natural-relief-treatment/
* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *
For medical information on problems, information on medicine and interactions, well ... everything and more than you could possibly want or need is on the web site below.
www.drugs.com supplies information to doctors, other medical specialists, and regular people.
For those who want ALL the information, including pictures of pills in a pill identifier, who really made them and where (most in China and India), has your pill been recalled and how many times.
There are reviews of drugs, written by the people who took them.
www.drugs.com is much better than any of the other medical sites online.
I checked out a huge number of them, Wed MD, Harvard ..., lots and lots of then.
The one below is 1000 percent better than any other in content.
http://www.drugs.com
Once you try them the rest are history.
Yes, Mum. I'll be better. :)
I think it was the bunch of somewhat rowdy guys on expense accounts who were running up the bar tab ... I won't tar the whole of Italy with that misimpression, henceforth. Promise!
Yes, glutathione .... need to get to the store ....
I think it was the bunch of somewhat rowdy guys on expense accounts who were running up the bar tab ... I won't tar the whole of Italy with that misimpression, henceforth. Promise!
Yes, glutathione .... need to get to the store ....
Now, Jackie, taking on the role of your Mum here...
You seem to be getting in to the habit of late nights lately, that is also NOT good for you. It wears out your adrenal glands, which will make you endlessley tired and brain foggy too.
But I also bet glutathione will help.
I'm surprised you met heavy drinking Italians, I've lived im many parts of Italy and I can tell you they are certainly the exception not the norm. The only part of italy where it's even considered socially aceptable to drink any significant amount is right up in the north eastern parts that border with Slovenia and, to a lesser extent, Austria.
Anywhere else, they'll open a bottle of beer (those little ones that hold less than a pint) and share it between 4 or 5 people. If there's anything less than 3 people to drink it they decide not to open it after all!!!
Whereas English people would have anything up to ten of those per person and be seriously obnoxious to anyone who didn't want to participate.
You seem to be getting in to the habit of late nights lately, that is also NOT good for you. It wears out your adrenal glands, which will make you endlessley tired and brain foggy too.
But I also bet glutathione will help.
I'm surprised you met heavy drinking Italians, I've lived im many parts of Italy and I can tell you they are certainly the exception not the norm. The only part of italy where it's even considered socially aceptable to drink any significant amount is right up in the north eastern parts that border with Slovenia and, to a lesser extent, Austria.
Anywhere else, they'll open a bottle of beer (those little ones that hold less than a pint) and share it between 4 or 5 people. If there's anything less than 3 people to drink it they decide not to open it after all!!!
Whereas English people would have anything up to ten of those per person and be seriously obnoxious to anyone who didn't want to participate.
Oh, you gave me a good laugh envisioning you 'watering' (drunkening?) the plants!
That's very interesting that you see less drinking in Italy than in the UK .... I always thought the emblem of Italy to be a nice glass of wine on the piazza. Or maybe the people I was working with in Italy just liked their drinkies a lot. Then again, when we all went out together, our employer was paying for the conviviality, so maybe that had some influence. :) I've found here in the US that there are people who are suspicious if one isn't drinking, as tho you're taking notes on what they say when they are 'in their cups'. You can see I'm still ill at ease about the situation. Ah well.
About a hematologist to test you for babesia ... yes, I think that's where I would go, IF it's an LLMD-type of hematologist and not a denier of all things associated in whatever way with Lyme. Since babs is similar to malaria, a hematologist should be able to acknowledge the infection without politics getting in the way, assuming the lab has the right chemicals or whatever to confirm the infection. I don't know if it's a matter of looking through a microscope or not, so don't know where the pitfalls in test technique may be. Rico may have some words of wisdom here.
I keep meaning to buy some more glutathione .... I had a little bottle of it a while back and finally started taking it one day, and when the little bottle ran out, I could see I was suddenly not feeling as sharp.... but until you said what you did, I didn't connect my lazy brain with lack of glutathione. Last I checked, it was a little expensive, but time to get some more.
I think I got myself calcium-deficient recently, and it was awful .... poor memory, aching joints, sore muscles. So I'm swilling milk again (as much as I dislike it), and it's helping. Maybe the glutathione will help too, so thanks much for mentioning that.
Well, it's the middle of the night again, and I've run out of steam here, so good night to all! Take care --
That's very interesting that you see less drinking in Italy than in the UK .... I always thought the emblem of Italy to be a nice glass of wine on the piazza. Or maybe the people I was working with in Italy just liked their drinkies a lot. Then again, when we all went out together, our employer was paying for the conviviality, so maybe that had some influence. :) I've found here in the US that there are people who are suspicious if one isn't drinking, as tho you're taking notes on what they say when they are 'in their cups'. You can see I'm still ill at ease about the situation. Ah well.
About a hematologist to test you for babesia ... yes, I think that's where I would go, IF it's an LLMD-type of hematologist and not a denier of all things associated in whatever way with Lyme. Since babs is similar to malaria, a hematologist should be able to acknowledge the infection without politics getting in the way, assuming the lab has the right chemicals or whatever to confirm the infection. I don't know if it's a matter of looking through a microscope or not, so don't know where the pitfalls in test technique may be. Rico may have some words of wisdom here.
I keep meaning to buy some more glutathione .... I had a little bottle of it a while back and finally started taking it one day, and when the little bottle ran out, I could see I was suddenly not feeling as sharp.... but until you said what you did, I didn't connect my lazy brain with lack of glutathione. Last I checked, it was a little expensive, but time to get some more.
I think I got myself calcium-deficient recently, and it was awful .... poor memory, aching joints, sore muscles. So I'm swilling milk again (as much as I dislike it), and it's helping. Maybe the glutathione will help too, so thanks much for mentioning that.
Well, it's the middle of the night again, and I've run out of steam here, so good night to all! Take care --
I've never actually been tested for babs, so I'll ask the doc about that. I don't know if it's v rare in Europe of else if he just didn't think I showed symptoms of it, but I'll certainly ask what he thinks.
Vitamin E is interesting as I do take that. I'll stop taking it for a while now and see if anything changes. I would guess vit E supplements coudn't cause this whole thin blood situation by themselves??? But could worsen an existing problem - right? Another one to ask Doc.
Ricobord, for oxidative stress you can get immense relief with Glutathione supplements. It's the king of all antioxidants and recycles most of the others (like vit E and c) in our bodies. It's a busy enzyme that also does lots of detoxing and, in many tick borne diseases, the liver cannot make the whopping amounts that we need, so we're chronically short.
I've tried many supplements but a lot are digested in the stomach into plain old amino acids and don't work. The one that really works is Jarrow Reduced Glutathione, I order mine on Amazon as there are several supplier there that offer good prices.
I really cannto recommend this strongly en ough. It's been a miracle worker for me, it gets rid of muyscle aches, dull headaces, brain fog, physical weakness and all the other problems of extreme oxidative stress within about an hour of taking it.
Jackie, I've been there with the alcohol thing. Iì've been totally unable to handle alcohol for years.
When I was working in London I had a boss who insisted on taking the team out for drinks ever Friday and being teetotal was not allowed. I became an expert on pretending to drink adn flicking things into potted plants. I think evert Friday night I must have watered the plants with about 20 dollars worth of alcohol just to keep my boss happy - who was paying for it all. Poor plants! Goodness knows how many of them I must have killed.
Luckily in Italy so many people are non-drinkers that you just have to say you don't want it and you get no hassle whatsoever. Being here has made me realise just how very obnoxious English people can be about booze.
No wonder we have a serious social problem with alcohol abuse.
Anyway, off to do more reading and make a doc's appointment.
Are we agreed that a hematologist is my best bet?
Vitamin E is interesting as I do take that. I'll stop taking it for a while now and see if anything changes. I would guess vit E supplements coudn't cause this whole thin blood situation by themselves??? But could worsen an existing problem - right? Another one to ask Doc.
Ricobord, for oxidative stress you can get immense relief with Glutathione supplements. It's the king of all antioxidants and recycles most of the others (like vit E and c) in our bodies. It's a busy enzyme that also does lots of detoxing and, in many tick borne diseases, the liver cannot make the whopping amounts that we need, so we're chronically short.
I've tried many supplements but a lot are digested in the stomach into plain old amino acids and don't work. The one that really works is Jarrow Reduced Glutathione, I order mine on Amazon as there are several supplier there that offer good prices.
I really cannto recommend this strongly en ough. It's been a miracle worker for me, it gets rid of muyscle aches, dull headaces, brain fog, physical weakness and all the other problems of extreme oxidative stress within about an hour of taking it.
Jackie, I've been there with the alcohol thing. Iì've been totally unable to handle alcohol for years.
When I was working in London I had a boss who insisted on taking the team out for drinks ever Friday and being teetotal was not allowed. I became an expert on pretending to drink adn flicking things into potted plants. I think evert Friday night I must have watered the plants with about 20 dollars worth of alcohol just to keep my boss happy - who was paying for it all. Poor plants! Goodness knows how many of them I must have killed.
Luckily in Italy so many people are non-drinkers that you just have to say you don't want it and you get no hassle whatsoever. Being here has made me realise just how very obnoxious English people can be about booze.
No wonder we have a serious social problem with alcohol abuse.
Anyway, off to do more reading and make a doc's appointment.
Are we agreed that a hematologist is my best bet?
Re babesia and malaria being similar.
I wonder if the tests for the two ailments show positive for each other ... that is, if a malaria test will show positive in the presence of babesia even it malaria is not present --- and if the tests don't cross-react, whether the labs and docs will think to test for them separately. Dunno.
I wonder if the tests for the two ailments show positive for each other ... that is, if a malaria test will show positive in the presence of babesia even it malaria is not present --- and if the tests don't cross-react, whether the labs and docs will think to test for them separately. Dunno.
Lots of great info above! I learned quite a few things. I had a wry smile at the "untreated infections" cause of low platelets. You're the poster child for that. ;)
A couple thoughts came into my head as I read it. I thought I'd pass them on for what they're worth, which could be nothing!
One is that it says above that an enlarged spleen can contribute to ITP. I learned at my LLMD appointment last week that my spleen is quite enlarged as it is busy killing Babesia parasites. While Babesia LOOKS like malaria and some of the same meds treat both, we don't really know how alike they are. But if malaria is linked to ITP, perhaps Babesia can, too.
Is it possible you have Babesia? My doc said that estimates in the US are that up to 10% of the population have asymptomatic, low levels of it. (I have no idea how common it is in Europe.) It can just hang out for years until symptoms show up. (It did in me for over 5 years.) My symptoms got worse and more apparent as the Lyme subsided.
The other thought is that I have the opposite problem, and my doc wants to thin my blood a bit. I have felt really fatigued and crummy since we started treating Babs, and he says I am retaining fluid and have oxidative stress. One of my new supplements is to help thin my blood a little bit, "in a good way."
And so I was wondering if you're on any supplements that could be thinning your blood. Some concoctions have obscure ingredients in them that can cause thinning. Vitamin E is also a known blood thinner.
I hope your blood tests show something useful! Keep us posted.
A couple thoughts came into my head as I read it. I thought I'd pass them on for what they're worth, which could be nothing!
One is that it says above that an enlarged spleen can contribute to ITP. I learned at my LLMD appointment last week that my spleen is quite enlarged as it is busy killing Babesia parasites. While Babesia LOOKS like malaria and some of the same meds treat both, we don't really know how alike they are. But if malaria is linked to ITP, perhaps Babesia can, too.
Is it possible you have Babesia? My doc said that estimates in the US are that up to 10% of the population have asymptomatic, low levels of it. (I have no idea how common it is in Europe.) It can just hang out for years until symptoms show up. (It did in me for over 5 years.) My symptoms got worse and more apparent as the Lyme subsided.
The other thought is that I have the opposite problem, and my doc wants to thin my blood a bit. I have felt really fatigued and crummy since we started treating Babs, and he says I am retaining fluid and have oxidative stress. One of my new supplements is to help thin my blood a little bit, "in a good way."
And so I was wondering if you're on any supplements that could be thinning your blood. Some concoctions have obscure ingredients in them that can cause thinning. Vitamin E is also a known blood thinner.
I hope your blood tests show something useful! Keep us posted.
I was just rereading what I wrote above, and thought to quote myself (ha):
I wrote above: "it would not be unexpected (I would think) for pregnancy to throw off blood chemistry too"
This is true. I was going to have an insurance company physical shortly after my daughter was born, and happened to mention that to my doctor -- he cautioned me to wait a few months so my cholesterol would fall after giving birth, otherwise I would likely failure the insurance company test. Why? Because Mother Nature has it worked out so that we mothers-to-be have extra cholesterol in our systems while the baby is gestating and later breast feeding, to nourish them and to aid in brain and eye and nervous system development.
That Mother Nature, she has a wise way about her. :)
I wrote above: "it would not be unexpected (I would think) for pregnancy to throw off blood chemistry too"
This is true. I was going to have an insurance company physical shortly after my daughter was born, and happened to mention that to my doctor -- he cautioned me to wait a few months so my cholesterol would fall after giving birth, otherwise I would likely failure the insurance company test. Why? Because Mother Nature has it worked out so that we mothers-to-be have extra cholesterol in our systems while the baby is gestating and later breast feeding, to nourish them and to aid in brain and eye and nervous system development.
That Mother Nature, she has a wise way about her. :)
I hear you and agree with your puzzlement. I think ITP [immune and/or idiopathic thrombocytopenia, how convenient they both start with "i"] is so multifactoral that once diet and passing infections are factored in, it's hard to tell what exactly *is* the cause ... and in fact, these may be multiple manifestations of different aspects of the immune system encountering different factors in the environment ... and so the multiplier effect makes it all difficult to chart out.
A hematologist (or possibly an allergist?) may be a good detective on these issues. Depends more on the doc's mindset than his/her speciality, as with many ailments -- so look around a bit if your current stable of docs doesn't seem to have a racehorse in residence.
A few quick comments on your remarks (it's well after 2 am here):
You say: "I have all the symptoms of thrombocytopenia, the bleeding and blood spots under the skin, easy bruising etc and even rectal bleeding, yet the blood test result showed them in normal range. At the bottom end, but still 'normal'."
Comment: There is no hard and fast level of 'normal', just a range that seems to work for many, but there are surely Bell-curve outliers, of which you may be one. What is a tolerable 'normal' bottom of the range for most people may be just too low for you, as an individual. I'd focus on what's going on with you rather than arbitrary cut-offs for 'normal'.
"So I think there has to be some other explanation of the non-clotting"
Comment: There may be, or it may be partly ITP and partly some other confounding factor. Mother Nature is nothing if not electic.
"I was reflecting on the genetic possibilities but realised this cannot be the explanation because I've had the problem coming and going over the years."
Comment: Ah, but it may be that you are just close enough to the supposed lowest demarcation of 'normal' that you stray back and forth over that invisible and arbitrary line depending on what else is going on with you physically. Like someone with bad arches: you might get away with wearing high heels sometimes, but probably can't run a marathon every week. Try not to view those cut off measures as hard and fast, because they are just approximations that in fact fit very few people exactly. Another example: 5' 5" may be average height for a woman, but precious few of us are exactly 5' 5", yet we don't despair over it unless we are 6' 5" or more, or 4' 5" or less. Lots of room between 4'5" and 6'5" without having to be exactly 5'5".
"Sometimes my blood clotting is normal."
Comment: This is good!
"Unfortunately it was NOT normal at the time of my caesarian and I hemorrhaged (yoinks!) but it's definitely not been a problem all the time."
Comment: Pregnancy, as you know, throws all otherwise standard measures out the window, so not surprising that things were off for you then, and it would not be unexpected (I would think) for pregnancy to throw off blood chemistry too.
"I was wondering about nutritional deficiencies that can affect blood clotting. The only one I know of is vitamin K, I don't know if that lowers platelets, which would bring me back to square one, or if it has some other mechanism."
Comment: Good question -- and a good one to ask the doc when you get there.
"I'm guessing from the lack of responses from the others that this isn't a typical Lyme disease problem???"
Comment: I do agree. It's only because of my family's experience over the generations, separate from our adventure with Lyme, that ever caused me to look into thrombocytopenia, and Lyme came well after the ITP adventure.
"Which was kind of What I had assumed/hoped it would be. Not exactly a solution but when you can blame everything on a single problem life seems a bit simpler!"
Too true! And that's a good spirit to take in figuring out what this might be so that you can deal with it most efficiently and with least disruption to your life. For example, if it turns out that eating X food tends to lower platelets, then avoid that food either mostly or entirely. Among the items named above as inducing ITP, there are several that may affect you personally:
-- alcohol
-- platelet-lowering meds (including over-the-counter medications), whatever those may be
-- aspirin and ibuprofen
-- rough sports
-- untreated infections
-- lack of vaccinations for measles, mumps, rubella, and chickenpox, which would tax your system
Just as one who is very fair skinned needs to stay out of the broiling midday sun, one who has platelet issues needs to take a few precautions too. If this turns out to be the case for you, I'm sure you can work around the stressors, for the benefit of you and those who love and need you.
It's a loss if you need to avoid alcohol, perhaps -- but it is so much better to have platelets!
(I personally don't metabolize alcohol very well, and it makes me feel like I am have the flu. After years of trying to keep up with everyone else and have a civilized drink when out and about, I finally gave it up and am much happier. I was working in Europe for some time when I was realizing all this, and it was quite charming to see the deep concern my European friends and coworkers had for me, urging me to see a doctor to 'fix' me so I could drink. But I was and am fine without the drink. When I go out now, I let the waiter pour me a half glass of wine for appearances sake, and just let it sit there untouched -- or I'll even fake a sip if it's strangers I am with. No one says much of anything, and if they do, I say 'Oh, just not in the mood.' So take care of yourself, and the rest will work out.)
All that is my long way of saying: find out what your body needs, and then give it just that. Those who care for you will understand, and those who can't see your good sense in this regard aren't really your friends anyway. :)
And be on the watch out for your children to have the same tendencies ... in case it's hereditary. Just like fair skin vs too much sun.
Now 3 am here! Off to bed. Be true to yourself, and the rest will work out for the best. J.
A hematologist (or possibly an allergist?) may be a good detective on these issues. Depends more on the doc's mindset than his/her speciality, as with many ailments -- so look around a bit if your current stable of docs doesn't seem to have a racehorse in residence.
A few quick comments on your remarks (it's well after 2 am here):
You say: "I have all the symptoms of thrombocytopenia, the bleeding and blood spots under the skin, easy bruising etc and even rectal bleeding, yet the blood test result showed them in normal range. At the bottom end, but still 'normal'."
Comment: There is no hard and fast level of 'normal', just a range that seems to work for many, but there are surely Bell-curve outliers, of which you may be one. What is a tolerable 'normal' bottom of the range for most people may be just too low for you, as an individual. I'd focus on what's going on with you rather than arbitrary cut-offs for 'normal'.
"So I think there has to be some other explanation of the non-clotting"
Comment: There may be, or it may be partly ITP and partly some other confounding factor. Mother Nature is nothing if not electic.
"I was reflecting on the genetic possibilities but realised this cannot be the explanation because I've had the problem coming and going over the years."
Comment: Ah, but it may be that you are just close enough to the supposed lowest demarcation of 'normal' that you stray back and forth over that invisible and arbitrary line depending on what else is going on with you physically. Like someone with bad arches: you might get away with wearing high heels sometimes, but probably can't run a marathon every week. Try not to view those cut off measures as hard and fast, because they are just approximations that in fact fit very few people exactly. Another example: 5' 5" may be average height for a woman, but precious few of us are exactly 5' 5", yet we don't despair over it unless we are 6' 5" or more, or 4' 5" or less. Lots of room between 4'5" and 6'5" without having to be exactly 5'5".
"Sometimes my blood clotting is normal."
Comment: This is good!
"Unfortunately it was NOT normal at the time of my caesarian and I hemorrhaged (yoinks!) but it's definitely not been a problem all the time."
Comment: Pregnancy, as you know, throws all otherwise standard measures out the window, so not surprising that things were off for you then, and it would not be unexpected (I would think) for pregnancy to throw off blood chemistry too.
"I was wondering about nutritional deficiencies that can affect blood clotting. The only one I know of is vitamin K, I don't know if that lowers platelets, which would bring me back to square one, or if it has some other mechanism."
Comment: Good question -- and a good one to ask the doc when you get there.
"I'm guessing from the lack of responses from the others that this isn't a typical Lyme disease problem???"
Comment: I do agree. It's only because of my family's experience over the generations, separate from our adventure with Lyme, that ever caused me to look into thrombocytopenia, and Lyme came well after the ITP adventure.
"Which was kind of What I had assumed/hoped it would be. Not exactly a solution but when you can blame everything on a single problem life seems a bit simpler!"
Too true! And that's a good spirit to take in figuring out what this might be so that you can deal with it most efficiently and with least disruption to your life. For example, if it turns out that eating X food tends to lower platelets, then avoid that food either mostly or entirely. Among the items named above as inducing ITP, there are several that may affect you personally:
-- alcohol
-- platelet-lowering meds (including over-the-counter medications), whatever those may be
-- aspirin and ibuprofen
-- rough sports
-- untreated infections
-- lack of vaccinations for measles, mumps, rubella, and chickenpox, which would tax your system
Just as one who is very fair skinned needs to stay out of the broiling midday sun, one who has platelet issues needs to take a few precautions too. If this turns out to be the case for you, I'm sure you can work around the stressors, for the benefit of you and those who love and need you.
It's a loss if you need to avoid alcohol, perhaps -- but it is so much better to have platelets!
(I personally don't metabolize alcohol very well, and it makes me feel like I am have the flu. After years of trying to keep up with everyone else and have a civilized drink when out and about, I finally gave it up and am much happier. I was working in Europe for some time when I was realizing all this, and it was quite charming to see the deep concern my European friends and coworkers had for me, urging me to see a doctor to 'fix' me so I could drink. But I was and am fine without the drink. When I go out now, I let the waiter pour me a half glass of wine for appearances sake, and just let it sit there untouched -- or I'll even fake a sip if it's strangers I am with. No one says much of anything, and if they do, I say 'Oh, just not in the mood.' So take care of yourself, and the rest will work out.)
All that is my long way of saying: find out what your body needs, and then give it just that. Those who care for you will understand, and those who can't see your good sense in this regard aren't really your friends anyway. :)
And be on the watch out for your children to have the same tendencies ... in case it's hereditary. Just like fair skin vs too much sun.
Now 3 am here! Off to bed. Be true to yourself, and the rest will work out for the best. J.
Thank you so much Jackie.
The thing that makes no sense to me is that I have all teh symptoms of thrombocytopenia, the bloeeding and blood spots under the skin, easy bruising etc and even rectal bleeding, yet the blood test result howed them in normal range. Al the bottom ebnd, but still "normal
"
So I think there has to be some other explanation of the non-clotting
I was reflecting on the genetic possibilities but realised this cannot be the explanation because I've had the probolem coming and going over the years. Sometimes my blood clotting is normal. Unfortunately it was NOT normal at the time of my cesarian and I hemorraged (yoinks!) but it's definitely not been a problem all the time.
I was wondering about nutritional deficiencies that can affect blood clotting. The only one I know of is vitamin K, I don't know if that lowers platelets, which would bring me back to square one, or if it has some other mechanism.
Anyway I'll come back to the thread to bounce more ideas off you if that's OK.
I'm guessing from the lack of responses from the others that this isn't a typical Lyme disease probolem??? Which was kind of What I had assumed/hoped it would be. Not exactly a solution but when you can blame everything on a single problem life seems a bit simpler!
Thanks so much again, Jackie.
The thing that makes no sense to me is that I have all teh symptoms of thrombocytopenia, the bloeeding and blood spots under the skin, easy bruising etc and even rectal bleeding, yet the blood test result howed them in normal range. Al the bottom ebnd, but still "normal
"
So I think there has to be some other explanation of the non-clotting
I was reflecting on the genetic possibilities but realised this cannot be the explanation because I've had the probolem coming and going over the years. Sometimes my blood clotting is normal. Unfortunately it was NOT normal at the time of my cesarian and I hemorraged (yoinks!) but it's definitely not been a problem all the time.
I was wondering about nutritional deficiencies that can affect blood clotting. The only one I know of is vitamin K, I don't know if that lowers platelets, which would bring me back to square one, or if it has some other mechanism.
Anyway I'll come back to the thread to bounce more ideas off you if that's OK.
I'm guessing from the lack of responses from the others that this isn't a typical Lyme disease probolem??? Which was kind of What I had assumed/hoped it would be. Not exactly a solution but when you can blame everything on a single problem life seems a bit simpler!
Thanks so much again, Jackie.
PS the list of topics within the wikipedia post are:
Contents
1 Signs and symptoms
2 Causes
2.1 Decreased production
2.2 Increased destruction
2.3 Medication-induced
2.4 Other causes
2.5 Comparing coagulation tests
3 Diagnosis
4 Treatment
5 Neonatal thrombocytopenia
6 Veterinary treatment
7 References
8 External links
Contents
1 Signs and symptoms
2 Causes
2.1 Decreased production
2.2 Increased destruction
2.3 Medication-induced
2.4 Other causes
2.5 Comparing coagulation tests
3 Diagnosis
4 Treatment
5 Neonatal thrombocytopenia
6 Veterinary treatment
7 References
8 External links
A broader article I've just found on wiki is simply on:
thrombocytopenia
Might be helpful to get the bigger picture.
thrombocytopenia
Might be helpful to get the bigger picture.
thanks so much Jackie.
I get going on some more reading up on all this tomorrow based on the info you've given.
I'll have to ask about malaria
I do wonder if there's a genetic thing going on with me as I have always had abnormal and debilitatingly heavy periods lasting 8 days.
Will call back in as I keep researching!
As always, thanks so much for your help and encouragement.
xxx
I get going on some more reading up on all this tomorrow based on the info you've given.
I'll have to ask about malaria
I do wonder if there's a genetic thing going on with me as I have always had abnormal and debilitatingly heavy periods lasting 8 days.
Will call back in as I keep researching!
As always, thanks so much for your help and encouragement.
xxx
I know enough about this topic to know it is complex -- someone in our extended family had ITP as a small child -- meaning immune thrombocytopenia aka idiopathic thrombocytopenia. There is a brief presentation on wiki:
http:// en. wikipedia. org / wiki / Idiopathic _ thrombocytopenic _ purpura
To my understanding, the "immune" version means the immune system has misidentified the platelets as invaders and goes about destroying them, thus lowering the platelet count and inhibiting clotting.
The "idiopathic" version, by contrast, means the docs don't know what is causing it, because there are so many possible places where the complex clotting chemistry and mechanisms can be disrupted. Sometimes it can be due to a passing virus, so I have read.
I have suspected that there may be genetic susceptibility to ITP [whether immune or idiopathic, I don't know], because there have been clotting and bleeding issues in our family. Generation 1 (great grandmother) and 2 (grandmother) were affected, generation 3 (mother) was not affected, but generation 4 (child, now adult) was affected at age 2. The docs who treated Gen4-child didn't go back to look at family history (and by the time Gen4-child had the symptoms, Gen1 and Gen2 had died), but I've still wondered about it.
The docs who treated the Gen4-child suspected that immunizations may have triggered the child's immune system to overreact, and I have wondered the same -- it used to be that 'jabs' (as the Brits call them, yes?) or 'shots' (as the Yanks call them) were fewer and more spread out over time. Now the immunization schedule is so condensed and there are so many of the jabs that it would not surprise me if an immature immune system overreacts and begins gobbling up platelets by accident, but this may not have been the case in your situation unless you've gotten immunizations lately.
The treatment for low platelets given to the Gen4-child in our family was a fairly short course (measured in weeks) of steroids, and it worked fine by temporarily suppressing the immune system so things could re-set. No recurrences in the decades since. Still not clear whether the cause was genetic, or immunizations, or a virus, or a combination, or something else entirely. I'm betting it was genetic AND immunizations.
Oh, and another historical observation: Gen2-grandmother, always had long (10 day) periods, with heavy flow, and perhaps Gen1-greatgrandmother as well, not sure. This definitely argues for a genetic basis, perhaps triggered into visibility by an infection in some.
And one more thought: is there malaria where you live, even at a low level? It can trigger thrombocytopenia, I think. Native Mediterranean populations may have, through the eons, developed some genetic defenses against it (as I think I have read), but if you are genetically not Mediterranean, it could leave you susceptible. Just guessing.
-----------------------------------------------------
So that's my background understanding of some of the factors that may be at play in your situation, fwiw. Your red blood cell count, while on the low end of normal, is still in the normal range, so if you are having bleeding episodes including heavy periods, heavy menstrual flow could account for the slightly low level of red blood cells through depletion. Why would you have heavy menstrual flow? Could be ITP, or could be genetic, if you have always had that tendency, or could be an endocrine (thyroid) connection (my Gen2-grandmother had lifelong low thyroid), so it's good to check that -- or it could be something else entirely out of my experience.
----------------------------------------------------------
To summarize: It's been a few years since I read up on ITP, so I'm not up to date on medical thinking and research, but with a slightly low red cell count but with noticeable clotting problems, the issue may be suppressed platelet production (in the bone marrow) or increased platelet destruction (due to an overactive immune system destroying the platelets too quickly) rather than problems with the red blood cells themselves.
There may also be larger endocrine issues at work in the background, as you note, since endocrine affects everything the body does. I would not necessarily let the doc ignore a re-evaluation of that aspect as part of the bigger picture.
What a messy message I've just written! I hope some of it is helpful, but remember, my medical license came out of a gumball (candy) machine. Let us know what you figure out -- best wishes -- J.
http:// en. wikipedia. org / wiki / Idiopathic _ thrombocytopenic _ purpura
To my understanding, the "immune" version means the immune system has misidentified the platelets as invaders and goes about destroying them, thus lowering the platelet count and inhibiting clotting.
The "idiopathic" version, by contrast, means the docs don't know what is causing it, because there are so many possible places where the complex clotting chemistry and mechanisms can be disrupted. Sometimes it can be due to a passing virus, so I have read.
I have suspected that there may be genetic susceptibility to ITP [whether immune or idiopathic, I don't know], because there have been clotting and bleeding issues in our family. Generation 1 (great grandmother) and 2 (grandmother) were affected, generation 3 (mother) was not affected, but generation 4 (child, now adult) was affected at age 2. The docs who treated Gen4-child didn't go back to look at family history (and by the time Gen4-child had the symptoms, Gen1 and Gen2 had died), but I've still wondered about it.
The docs who treated the Gen4-child suspected that immunizations may have triggered the child's immune system to overreact, and I have wondered the same -- it used to be that 'jabs' (as the Brits call them, yes?) or 'shots' (as the Yanks call them) were fewer and more spread out over time. Now the immunization schedule is so condensed and there are so many of the jabs that it would not surprise me if an immature immune system overreacts and begins gobbling up platelets by accident, but this may not have been the case in your situation unless you've gotten immunizations lately.
The treatment for low platelets given to the Gen4-child in our family was a fairly short course (measured in weeks) of steroids, and it worked fine by temporarily suppressing the immune system so things could re-set. No recurrences in the decades since. Still not clear whether the cause was genetic, or immunizations, or a virus, or a combination, or something else entirely. I'm betting it was genetic AND immunizations.
Oh, and another historical observation: Gen2-grandmother, always had long (10 day) periods, with heavy flow, and perhaps Gen1-greatgrandmother as well, not sure. This definitely argues for a genetic basis, perhaps triggered into visibility by an infection in some.
And one more thought: is there malaria where you live, even at a low level? It can trigger thrombocytopenia, I think. Native Mediterranean populations may have, through the eons, developed some genetic defenses against it (as I think I have read), but if you are genetically not Mediterranean, it could leave you susceptible. Just guessing.
-----------------------------------------------------
So that's my background understanding of some of the factors that may be at play in your situation, fwiw. Your red blood cell count, while on the low end of normal, is still in the normal range, so if you are having bleeding episodes including heavy periods, heavy menstrual flow could account for the slightly low level of red blood cells through depletion. Why would you have heavy menstrual flow? Could be ITP, or could be genetic, if you have always had that tendency, or could be an endocrine (thyroid) connection (my Gen2-grandmother had lifelong low thyroid), so it's good to check that -- or it could be something else entirely out of my experience.
----------------------------------------------------------
To summarize: It's been a few years since I read up on ITP, so I'm not up to date on medical thinking and research, but with a slightly low red cell count but with noticeable clotting problems, the issue may be suppressed platelet production (in the bone marrow) or increased platelet destruction (due to an overactive immune system destroying the platelets too quickly) rather than problems with the red blood cells themselves.
There may also be larger endocrine issues at work in the background, as you note, since endocrine affects everything the body does. I would not necessarily let the doc ignore a re-evaluation of that aspect as part of the bigger picture.
What a messy message I've just written! I hope some of it is helpful, but remember, my medical license came out of a gumball (candy) machine. Let us know what you figure out -- best wishes -- J.
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A search online for 'thrombocytopenia' will also pull up similar posts by the Mayo Clinic, the National Institutes of Health, and other mainstream heavyweights. Reading a selection of these (and none of them is terribly long) will give you a sense of where the focus of mainstream medicine is on the topic. Another layer down may or may not give you more diversity of opinion ... but sorting through the current positions of mainstream medicine (before moving on to less standard views) is where I would start to develop a list of issues to talk to my doc about.
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Thrombocytopenia
1 -- What is thrombocytopenia?
Thrombocytopenia is a condition in which the body does not produce enough platelets, one of the components of blood.
Blood is made up of three parts:
-- red blood cells, which carry oxygen throughout the body;
-- white blood cells, which help fight infection; and,
-- platelets, which stick together at the site of a cut or wound to form a clot to stop the bleeding.
People who have thrombocytopenia don’t have enough platelets to form a blood clot, and so they may bleed excessively when they are cut.
2 -- How does thrombocytopenia occur?
Blood cells (including platelets) are made in the bone marrow, the spongy tissue inside of bones. Certain factors may interfere with the body’s ability to make platelets, including:
-- disease or treatment for disease. For instance, diseases such as leukemia (cancer of the bone marrow and bloodstream) and lymphoma (cancer of the lymph system) can cause dysfunction of the bone marrow. Radiation and chemotherapy treatment for cancer can damage the blood stem cells that eventually become blood cells.
-- aplastic anemia, a disease that prevents the bone marrow from making blood cells
-- exposure to certain viruses, including Epstein-Barr and chicken pox
-- an enlarged spleen (an organ that stores platelets and helps the body fight infection). The enlarged spleen tends to trap platelets and prevent them from circulating in the bloodstream.
-- heredity (the condition is passed down from a parent)
-- exposure to toxic chemicals
-- taking certain medications, such as diuretics and certain seizure medications
-- drinking too much alcohol
Platelets may also be destroyed by the body because of an autoimmune disease (the body’s immune system attacks the body), such as idiopathic thrombocytopenic purpura.
3 -- What are the symptoms of thrombocytopenia?
The main symptom of thrombocytopenia is bleeding, either on the surface of the skin or inside the body. (In some mild cases of thrombocytopenia, there may not be any symptoms.)
4 -- Symptoms of thrombocytopenia include the following:
-- bleeding on various parts of the skin. You may have small red or purple spots called petechiae on your lower legs, or bruising that is purple, red, or brown (known as purpura).
-- bleeding that doesn’t stop on its own, such as a nosebleed or bleeding from your gums when you brush your teeth
-- heavier bleeding during menstrual periods
-- internal bleeding, such as blood in the urine or stool or bleeding from the rectum
5 -- How is thrombocytopenia diagnosed?
If your doctor thinks you may have thrombocytopenia, he or she will take your medical history and perform a physical exam.
During the medical history, your doctor will ask about any medications you are taking, if anyone in your family has had thrombocytopenia, and whether you have been exposed to any blood (including blood transfusions) or used any intravenous drugs.
During the physical exam, your doctor will check your skin for any signs of bleeding, small spots of blood (petechiae), or bruises (purpura). He or she will also press on your abdomen to see if your spleen or liver are enlarged. You may also have an ultrasound to see if your spleen is enlarged.
Your doctor may also order certain blood tests, including a blood count and tests to see if your blood is clotting correctly. You may also have a bone marrow biopsy. During a bone marrow biopsy, the doctor extracts bone marrow fluid and tissue with a needle and examines it for any abnormalities.
6 -- How is thrombocytopenia treated?
If your doctor feels that the thrombocytopenia is not a serious threat to your health, he or she may choose not to treat it.
Your doctor may decide to treat the thrombocytopenia by treating the disease or condition that is causing it. For instance, if you are taking a medication that is causing thrombocytopenia, your doctor may switch you to another medication. If the thrombocytopenia is caused by problems with your immune system, your doctor may prescribe steroids or immune globulin, or may arrange for you to have a blood or platelet transfusion in order to replenish the number of platelets.
In some cases, the patient may have his or her spleen removed in order to keep it from destroying platelets. Because the spleen helps the body fight infection, removing it may place the person at higher risk for infections.
7 -- Can thrombocytopenia be prevented?
While you may not be able to prevent thrombocytopenia, there are certain things you can do to lessen its effects, such as the following:
-- Limit your intake of alcohol, since alcohol slows production of platelets.
-- If you are taking any medications that may decrease your platelet count (including over-the-counter medications), talk to your doctor about switching to another medication.
-- Avoid medications that can thin your blood, such as aspirin and ibuprofen.
-- Try to avoid activities in which you might be injured and might bruise or bleed.
-- If you get an infection, talk to your doctor.
-- Ask your doctor if you should be vaccinated against diseases such as measles, mumps, rubella, and chickenpox.
© Copyright 1995-2009 The Cleveland Clinic Foundation. All rights reserved.
This information is provided by the Cleveland Clinic and is not intended to replace the medical advice of your doctor or health care provider. Please consult your health care provider for advice about a specific medical condition. This document was last reviewed on: 8/25/2009…#14430
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