Platelets

[Guest guest]

In a message dated 7/21/03 10:25:40 AM, Helen@...

writes:

<< Let me know what you want to do. Our health care system is so different to

yours that I am not really sure if we would be able to coordinate the

results but we can try! >>

Sounds like you may be a force for change? I find it hard to believe that you

cannot get your own health information.

I think the database would also be a great idea. We do not need all of the

data but would encourage all to enter what they have. We could also develop a

form that they could take to the Dr. to have the information recorded.

We still need to think about this some more. I would prefer to use Filmmaker

Pro as the database as I know that one very well and it can be set up on the

Internet.

We will need to give every one a code that they choose as their own ID so the

data will be confidential.

Here would be some basics.

Your code number which you can select and will be unique.

Age, gender

Age of onset of HTN.

Age of Dx of low K K

A box for a narrative of how the diagnosis was finally arrived at and the

trials and tribulations that occurred in getting to the right diagnosis.

What meds and dose worked and didn't

Family history of HTN, low K

Describe problems with cramps that you have had:

How many times a night do you get up to urinate. How long has this been a

problem?

Do you: eat licorice every day? Use any licorice flavored products such as

medicines, chewing tobacco or snuff.

What happened to your BP during pregnancy?

Detailed family pedigree with ages and causes of death as far back as

possible.

Do you have any short fingers?

What was your renin test results?

What were your blood and urine aldosterone results?

The narrative history would be the most interesting as they can be very

profound as I am sure you know.

Lets keep thinking on how to do it. Can you keep track of these suggestions

and I will think of more. We can also organize them better.

I will speak to colleagues as well.

Thanks CE Grim MD

[Guest guest]

Original Message:

-----------------

Dr Grim wrote:

<snip>

Sounds like you may be a force for change? I find it hard to believe that

you

cannot get your own health information.

<snip>

I can only change the system if I can get enough MPs and MSPs and Welsh

Assembly Members and Northern Ireland MPs passionate enough to sponsor a

private members bill through Westminster and so change the 1947 Health Act!

It has been tried in the past but with no real changes as the Dr always has

the get out that disclosure of information could harm the patient. If we

want our records here in Scotland we have to get a court order - and the Dr

can turn round at any point and say disclosure would not be in the

patient's best interest and that is that! I already got one order for my

last lot of notes but not all of them were sent to me as you know. That

left me in the position of no notes so no evidence to use in a medical

negligance claim so no claim.

Under the Data Protection Act you do have a right to see your computer

records unless it would not be in your best interests to have such records.

You also have to pay to look at the records!

Just found out the Dr who messed up has " retired " (he didn't want to answer

the BMA questions at the inquiry) which is sort of good news but leaves the

nearest Dr for that isolated community 20 miles away so that is not such

good news for them. There is talk of appointing a salaried GP but that will

take time.

Helen

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[Guest guest]

And here I thought the British system was good in many respects. At least everyone can get care I assume. Is Scotland different?

May your pressure be low!

CE Grim, BS (Chem/Math), MS (Biochem), MD.

Professor of Medicine and Epidemiology

Board Certified in Internal Medicine, Geriatrics and Hypertension

Published over 230 research papers, chapters and reviews in the area of high blood pressure: epidemiology, history, endocrinology, genetics and physiology.

[Guest guest]

nne,

My platelet count is 31. It is my understanding that as the spleen enlarges and the cirrhosis progresses this causes the decreased platelet count. Check with your doctor. The only thing they tell me to do is I take Vitamin K (RX only) upon Hepatologist order and be very careful with shaving, always wear seat belt, basically be smart about putting yourself in a situation where you will be injured or risk bleeding. I have to have 6 month EGD's and bandings for the varices and there was talk about being given platelets by the transplant center but the Hepatologist said it wasn't needed. Ask your doctor. I think it is just progression of the enlargement of the spleen.

.

[Guest guest]

Thanks, . I'm not as worried about it now. I emailed my PCP about it, and my gastro happened to be at her office when she read the email, so he called me. He says he doesn't usually get concerned until it goes down to about 50. He didn't have my chart with him and couldn't remember if my spleen was already enlarged or not. I was wondering about Vitamin K. My gastro said he would talk to me more in March when I have my next endoscopy, and after he's reviewed my chart. Guess I was mainly wondering how long it takes to get down low enough to be a problem and what they would do about it. I was at 289 about a year and a half ago, and now I'm down to 90. Do you think that means the cirrhosis is definitely progressing?

Thanks for your information.

nne

Re: [ ] Platelets

nne,

My platelet count is 31. It is my understanding that as the spleen enlarges and the cirrhosis progresses this causes the decreased platelet count. Check with your doctor. The only thing they tell me to do is I take Vitamin K (RX only) upon Hepatologist order and be very careful with shaving, always wear seat belt, basically be smart about putting yourself in a situation where you will be injured or risk bleeding. I have to have 6 month EGD's and bandings for the varices and there was talk about being given platelets by the transplant center but the Hepatologist said it wasn't needed. Ask your doctor. I think it is just progression of the enlargement of the spleen.

.

[Guest guest]

Hi, My daughter (PSC & UC) has had to be infused with

platelets the last 2 times before she could be scoped and banded.In

July her platelets were 22,after infusion the jumped to 44,she was

scoped,then after 6 hours they dropped back to 41.In Oct. they were

51,Dec.-37,Jan-39,after infusion they bumped backed up to 41,then she

was scoped & banded.

She is scoped every 6 months, & has labs every 2 months.From what her

Hep. has told me it is the portal hypertension that causes the

platelet problem.I know there is a shunt procedure that they can do

before transplant sometimes that buys you more time,which makes the

blood flow better to the liver,and usually your labs improve with the

better blood flow.The Docs have talked about that a couple of times,

but then things usually settle down for -she is not a textbook

case,I have been told from her Docs,but is anybody?Usually what ever

can go wrong,usually does!!

-'s Mom

[Guest guest]

nne,

My GI and Hepatologist have differing opinions on Vitamin K. When I take it I don't bruise as bad and for me it's more for the psychi than anything. Your spleen gobbles it up so quickly it really doesn't do much long term good. (Building up platelets.) Just keeps the bruising at bay and for me it make me not worry so much. I know the counts are going to be low until the new liver but If I don't look like a road map all the time I mentally feel better. Cirrhosis is progressive. The only true way to tell is liver biopsy. Nothing we can do to stop it but take our meds and hope for the best. If it bothers you I'd ask.

[Guest guest]

I've gotten back some blood tests and for the past few months I notice that

my platelets are elevated. Last time I took a blood test two days after

bursting a hemmorhoid, so that could explain why it was 100 points above

normal. But now it is very high normal. Just finished taking antibiotics for

a sinus infection which still seems to be around (by my WBC which are 8.3,

I'm normally around 6). Could it be from that? I take vitamin E (400 units)

and ginko biloba every day. but I also take iron supplementation.

Any natural suggestions to lower my platelet count before going onto

something like aspirin? I remember reading about bromelain...

Judy

[Guest guest]

Hi Judy,

Grape Seed Extract has antiplatelet activity. Ken has some

references on this page

http://lassesen.com/cfids/supplements/grapeseed.htm

There are others that may also have antiplatelet activity, I believe

garlic and ginseng, but I don't have any references handy for those.

Laurie

[Guest guest]

Dear Dorothy,

Before you consider of think of treatment, you must do some more research, I

know many people with CLL live with lower platelets, 147 is a very good

number, I should not use that as the only reason for considering treatment.

I only started treatment, because my bone marrow was saturated with

lymphocyte cells, my HB did not hold and eventually got down to 6 and my

platelets did the same thing and were down to 16.

It is more important to understand why the counts go the wrong way than

simply the counts going up or down.

An off topic parallel: you have damp coming out of your floor, well there is

always a reason, maybe a water pipe is damage and water filters through, so

mending the damp patch does not sort out the problem just treating it, but

researching and finding out why it happens will go to the root of the

problem. I feel this is a simplistic way of looking at it, but has got some

truth.

regards

Chonette (UK)

dx 10-02 (aged 57)

starting first around treatment.

Low doses chlorambucil/rituximab

no side effects at all on first round, due for blood test tomorrow after the

first week, do not know what to expect.

" I have so far had no treatment. I have a feeling that

> I might have to decided whether to start treatment or not when I go in

> the next time, unless my platelets go up.

> Dorothy

> Age 58 "

[Guest guest]

Hi,

What a good metaphor, Chonette. I went through exactly the same thing with

similarly low HB and platelets -- and 3 years after Ritux/Flud now live

with a platelet count that swings up and down. I truly believe that the

decision to treat is based on how you feel combined with the numbers. For

some reason (chinese medicine? no other choice with a 5-year-old with a

broken leg?) I adapted to low counts until they became symptomatic -- that

is, huffing and puffing up slight inclines, lots of bruising, ongoing

infections, etc. -- which led me to the MD and discovery of CLL/SLL. I'm

not saying I recommend waiting that long; I was ignorant. But knowing what I

do now, I do believe that, with drug resistance a reality, I may not be as

lucky next time around with remission, so I'll try to keep as healthy as

possible and put treatment off as long as possible.

I wish you all the best! And Chonette, I'm hoping your counts are changing

for the better!

Marietta

<html><div><BLOCKQUOTE dir=ltr style= " MARGIN-RIGHT: 0px " >

<P align=center><FONT face= " Verdana, Geneva, Arial, Sans-serif "

color=#33ccff><EM><STRONG>Marietta Brill <BR></STRONG>cell: 718-938-8712

<BR></EM></FONT></P></BLOCKQUOTE></div></html>

----Original Message Follows----

From: " Chonette " <ch@...>

Reply-SLL-CLL-edu

<SLL-CLL-edu >

Subject: Re: platelets

Date: Tue, 31 Jan 2006 10:54:39 -0000

Dear Dorothy,

Before you consider of think of treatment, you must do some more research, I

know many people with CLL live with lower platelets, 147 is a very good

number, I should not use that as the only reason for considering treatment.

I only started treatment, because my bone marrow was saturated with

lymphocyte cells, my HB did not hold and eventually got down to 6 and my

platelets did the same thing and were down to 16.

It is more important to understand why the counts go the wrong way than

simply the counts going up or down.

An off topic parallel: you have damp coming out of your floor, well there is

always a reason, maybe a water pipe is damage and water filters through, so

mending the damp patch does not sort out the problem just treating it, but

researching and finding out why it happens will go to the root of the

problem. I feel this is a simplistic way of looking at it, but has got some

truth.

regards

Chonette (UK)

dx 10-02 (aged 57)

starting first around treatment.

Low doses chlorambucil/rituximab

no side effects at all on first round, due for blood test tomorrow after the

first week, do not know what to expect.

" I have so far had no treatment. I have a feeling that

> I might have to decided whether to start treatment or not when I go in

> the next time, unless my platelets go up.

> Dorothy

> Age 58 "

[Guest guest]

My boys have always had normal levels of platelets.then started running

on the high side.. got up to 506 - we were told not to worry about them. I

do know that platelets can increase (or decrease) b/c of infection.

Inflammation can also increase platelets. If you go to

www.shwachmandiamondamerica.org <http://www.shwachmandiamondamerica.org/>

and click on " community " (make sure your pop up blocker is off-then click on

the blood forum. I have links and info there about high platelets, if you

are interested.

Peace Be With You,

Pattie

Don't let your past dictate who you are now, but let it be a part of who you

will become.

_____

From: [mailto: ] On Behalf Of

jmfritze

Sent: Thursday, March 23, 2006 7:11 PM

Subject: Platelets

Is it common for our PID kids to have high platelet counts? Ana's

have always been through the roof, just wondering.

Sorry I don't have more to contribute.

Ana 14 mo

_____

[Guest guest]

> do know that platelets can increase (or decrease) b/c of infection.

>

Patti,

I will check those sites out. Ana runs around 700+ all the time, has

since she was four months old. No one seems to think it is a big

deal. It just seems weird to me.

Thanks

[Guest guest]

> do know that platelets can increase (or decrease) b/c of infection.

>

Patti,

I will check those sites out. Ana runs around 700+ all the time, has

since she was four months old. No one seems to think it is a big

deal. It just seems weird to me.

Thanks

[Guest guest]

Macey's had this. We were also told not to worry.

Ursula - mom to Macey (10,CVID) and (13)

http://members.cox.net/maceyh

Immune Deficiency Foundation http://www.primaryimmune.org

Pediatric PID email list

Modell Foundation http://jmfworld.org

[Guest guest]

Macey's had this. We were also told not to worry.

Ursula - mom to Macey (10,CVID) and (13)

http://members.cox.net/maceyh

Immune Deficiency Foundation http://www.primaryimmune.org

Pediatric PID email list

Modell Foundation http://jmfworld.org

[Guest guest]

All of it depends upon the reason for the low platelets. Since

chemotherapy can damage the bone marrow cells, low blood counts might be

the result of the treatment and not the disease. If the low

platelets are the result of the chemotherapy then he would not be a stage

IV.

At 08:40 PM 1/14/2008, you wrote:

I

don’t understand the message below. My husband just completed chemo

and they told him he is in complete remission. After chemo,

however, his platelets dropped. It has been 3 months since chemo

and his platelets are still only at 90. Based on the below, does

that mean he is in stage IV CLL?

,

Nothing new. Physicians have moved toward cytoxan in place of

chlorambucil because it seems gentler on the marrow. I am not sure I

understand the significance of a drop in platelets from 184 to 162.

Remember that normal is still normal (and anything above 150 is

normal)

and 100 is the cut-off used for stage IV CLL. Perhaps your oncologist

also noted something else.

Rick Furman, MD

Gale Senter

Vice President Finance

23521 Paseo De Valencia Suite 200

Laguna Hills, CA 92653

(949)465-0161

(949)586-0470 (fax)

[Guest guest]

I'm interested in this too, Lilian, as mine fell from 199 to 147.

What is the normal range for platelets anyway?

Hope somebody knows!

Tracey

>

> Does anyone know if low platelets (below the range) signify anything.

>

> Lilian

[Guest guest]

'A low RBC count may indicate anemia, bleeding, kidney disease, bone

marrow failure (for instance, from radiation or a tumor),

malnutrition, or other causes. A low count may also indicate

nutritional deficiencies of iron, folate, vitamin B12, and vitamin B6.'

http://www.labtestsonline.org/understanding/analytes/rbc/test.html

Luv Bella

>

> Does anyone know if low platelets (below the range) signify anything.

>

> Lilian

>

[Guest guest]

Well I should imagine that it means your body doesn't heal as quickly.

When you cut yourself or have an operation, anytime the skin is broken

platelets rush to the spot and grow threads of new tissue to cover the

wound and protect it from infection. They also push out any foreign

bodies that might be in the wound. Very clever thing the human body!!

When it works properly that is!!!

Day 2 of Armour, by the way folks feeling more confident all the time!!!

Glynis

>

> Does anyone know if low platelets (below the range) signify anything.

>

> Lilian

>

[Guest guest]

Sorry, got that wrong. Here is the correct info.

http://www.netdoctor.co.uk/diseases/facts/thrombocytopenia.htm

Luv Bella

>

>

> 'A low RBC count may indicate anemia, bleeding, kidney disease, >

>

>

> >

> > Does anyone know if low platelets (below the range) signify

anything.

> >

> > Lilian

> >

>

[Guest guest]

The range for platelets (according to the lab that did mine) is 150 - 450. Mine is 129. Does anyone think the doctor should have picked up on this? I see yours in just under the range Tracey.

They are so quick to pick up on low TSH, but seem to ignore everything else which is low.

Lilian

I'm interested in this too, Lilian, as mine fell from 199 to 147. What is the normal range for platelets anyway?

[Guest guest]

Lilian, have you had your platelet count done for previous blood

tests? If so, are the results also around the 129 mark?

All my previous results show my platelet count staying consistently

in the 180s and 190s, so the drop down to 147 does stand out.

As a matter of interest, I did used to experience a lot of

unexplained bleeding, very poor wound healing, and very slow

clotting (during the time I was being CO poisoned)- and that was

when my platelet count was higher. It is odd that all those symptoms

are much less of an issue now, yet my platelet count is so much

lower.

I shall ask the toxicolgist what it could mean and report back here.

Tracey

> The range for platelets (according to the lab that did

mine) is 150 - 450. Mine is 129. Does anyone think the doctor

should have picked up on this? I see yours in just under the

range Tracey.

>

> They are so quick to pick up on low TSH, but seem to ignore

everything else which is low.

>

> Lilian

> I'm interested in this too, Lilian, as mine fell from 199 to

147.

>

> What is the normal range for platelets anyway?

>

>

>

>

>

>

> ---------------------------------

> Support the World Aids Awareness campaign this month with

for Good

>

[Guest guest]

You never miss the water until the well runs dry. Same with platelets.

Sometimes they are misunderstood, but I think it is safe to say that you

can live with little to none, as Skip has already proved that. He has defied

every law about CML there is and he keeps going and says after he receives

any blood products, he feels well. He just has to stay away from people.

As many of you are aware, my Ariad is on hold because of my platelet counts.

Tomorrow I get a CBC and will know something about what direction they are going

in. I am really afraid I will not be able to stay in this trial and there are

no more.

What I probably have according to my local doctor is a clone. Now if anyone

knows anything about clones, now is the time to talk and get my full attention.

He has also suggested that I give up all the CML meds for a better QOL, & to

just let him monitor me. I told him I thought that would be an open invitation

for me to pick up a mutation.

I would appreciate some feedback from anyone in the group who can offer some

information pro and con about the possibility of doing this and if they would be

open to it if their doctor suggested it.

Carpe Diem,

Lottie Duthu

[Guest guest]

Hi Lottie: I cannot give you any feedback on this, but I know whatever you

decide to do will work for you. I always think of Skip when I am having some

type of problem, and how he has survived.

So many people might not agree with me, but positive thinking and Faith should

be our first choice. IT can be so hard at times, when nothing is going right to

have that great Faith to keep us going.

Lets pray your CBC is not as bad as you or they think, and that you can get back

on the Ariad Trial. If you can't, something else will work out. Your always

there to support everyone else, and I am sure there will be plenty of prayers

going out for you tonight.

With everything that has been going on with me, I am also trusting God for

this one. I got so fed up with everything, and I finally

LET GO AND LET GOD. Let us all know how you make out with your test.

>

> You never miss the water until the well runs dry. Same with platelets.

Sometimes they are misunderstood, but I think it is safe to say that you

> can live with little to none, as Skip has already proved that. He has defied

> every law about CML there is and he keeps going and says after he receives

> any blood products, he feels well. He just has to stay away from people.

>

> As many of you are aware, my Ariad is on hold because of my platelet counts.

Tomorrow I get a CBC and will know something about what direction they are going

in. I am really afraid I will not be able to stay in this trial and there are

no more.

>

> What I probably have according to my local doctor is a clone. Now if anyone

knows anything about clones, now is the time to talk and get my full attention.

He has also suggested that I give up all the CML meds for a better QOL, & to

just let him monitor me. I told him I thought that would be an open invitation

for me to pick up a mutation.

>

> I would appreciate some feedback from anyone in the group who can offer some

information pro and con about the possibility of doing this and if they would be

open to it if their doctor suggested it.

>

> Carpe Diem,

> Lottie Duthu

>

>