ITP

[Guest guest]

Janel,

Thanks for your answer reguarding ITP...About 3 yrs ago in a routine blood

test they found that I had low playlets....under 40,000...I too had a bone

marrow test and was told that the reason for the low playlets was some sort

of infection...They watched for about a yr....nothing really changed...they

did go up a little...I stopped going because I was caught up with Tyler who

is now just 17 and has PSC,AIH,Crohns,Rhuematoid Arthritis and also has low

playlets.....His stay at about 60,000...He was in the hosp. last year this

time because his spleen was huge...taking up most of his abdominal

caviety...couldn't eat or drink anything because his stomach was so

squashed...He was in hosp..2 wks..there was talk about taking it out but it

did start to get a little smaller...He had to wear a specially made spleen

guard for about 6 months (only slept with it off). It is still large but

isn't causing him any trouble right now....

I just had some blood work done and mine has gone back up in the 100's...

They do warn Tyler about feeling dizzy etc if he has been bumped in that

area...He is allowed NO contact sports..no bike riding,etc...doesn't make him

very happy..

Well thanks again for you info...

Luanne Ty's mom

[Guest guest]

Hi Connie,

I have been on synthroid for 20 years now, and when I went in yesterday, he

made me go for more blood tests, said my synthroid seemed a little high. I

have never attributed the thyroid problem to the hep because 5 out of 6 kids

in myfamily (brother and sisters) have either had high or low levels on

there thyroid tests, without having hep. I now have a neice who is on

replacement. I always considered it a family genetic fault. Diabetes also

runs in the family.

If I may ask, what were your platelet levels, before treatment and have you

been treated for the ITP.

Sue

suejacks@...

[Guest guest]

Hi Sue,

I am trying to remember. They were low, I was

having nosebleeds on a daily basis not to long before

I was dx with HepC . I had to go to the ER with one of

them (my BP was 42/36). I never want to do that

again(why, see next sentence). Have you ever seen

what they call a nose tampon if not believe me, you

don't want too. I remember 20-30 (I forget what they

are measured in), being the level before treatment and

up to 90 during. I really never paid much attention

to the level. It was just something that was always

being done. The reason I wonder about what that Dr

told me is, in November after I had been pulled from

tx in the begining of Oct/99, not be cause of blood

levels (lost job, no insurance). I went in for pre-op

bloodwork for the, Bilateral Carpal Tunnel Syndrome

surgery. My bloodwork showed my bleeding time,

greater than 3 times normal. They refused surgery

because they said once they were done and the Carpal

Tunnel was closed back up, I would be bled out through

the Carpal Tunnel. They said something was having an

aspirin type effect on my blood, that the Platelets

looked fine. But, now you have me wondering about the

Thyroid. My Thyroid, was fine before I was in the

Burn Unit 9/91-12/91, where I received the blood with

the Hep C. I never attributed it to the Hep C either.

But now that you said that, I wonder.

My eyesight was bad after the blood also. I was

nearsighted after the transfusion and still am. It

was kind of like an overnight thing, even though it

wasn't overnight. I noticed that I was afraid to

drive and attributed it to when I drove to an ER, in

shock. It finally dawned on me that I could no longer

see blocks away when I tried to drive.

One thing with the ITP I would know when the levels

were low because of the bruising (I am bruising bad

lately, but I am a big Klutz). Also, because of the

ITP my blood was monitored weekly, when I was on the

Combo. I was born with ITP (that is the reason it is

tagged Congenital), my daughter was also, and several

Neices and a couple of Nephews. I have no idea why it

did not show up in my Sisters and Brothers, just in

their kids. Also in my Neices and Nephews who are

close to me in age and older than me, their children

do not have it. Possibly could be the fact my Brothers

and Sisters, are much older than me. Your guess, is

as good as mine.

The Dr told me the tx messes with the Thyroid. Hope

I answered your questions..........Take Care, Connie

--- <suejacks@...> wrote:

> Hi Connie,

> I have been on synthroid for 20 years now, and when

> I went in yesterday, he

> made me go for more blood tests, said my synthroid

> seemed a little high. I

> have never attributed the thyroid problem to the hep

> because 5 out of 6 kids

> in myfamily (brother and sisters) have either had

> high or low levels on

> there thyroid tests, without having hep. I now have

> a neice who is on

> replacement. I always considered it a family

> genetic fault. Diabetes also

> runs in the family.

>

> If I may ask, what were your platelet levels, before

> treatment and have you

> been treated for the ITP.

>

> Sue

> suejacks@...

>

>

>

__________________________________________________

[Guest guest]

Yes I do, I have the rash over my entire body now.

New ones just showed up in places where there are skin

grafts. They were on my forearms before being

daignosed with Hep C. It looks like the cryo rash but

not as icky. Or like Measles, Prickly Heat, Roseola,

along that line. Do you have ITP?..I am sorry my

memory sucks, I am actually getting worried about

it.........Take Care, Connie

--- <suejacks@...> wrote:

> Hi Connie,

> I was wondering if you got little red bumps, I have

> a few, but not many. My

> doc got me in to see a hemotologist in 2 weeks. I

> was surprized it did not

> take longer.

> Thanks,

> Sue

>

>

__________________________________________________

[Guest guest]

Hi Connie,

My hepatologist thinks it is a possibility. He felt the way my platelets

dropped, 100,000 from one blood test to the next that it is not just liver

disease. He said with cirrhosis you would expect a gradual decrease. My

platelets had rebounded to 90,000, but are back at 47,000. New hepatologist

and very thourough. So I am off to a hemotologist in two weeks.

Thanks

Sue

[Guest guest]

It sounds like a good possibility that you do. The

little red spots I think are called pectiae or

something like that. Be careful do not cut yourself.

He has probably told you to stay away from aspirin

products.....Take Care, Connie

--- <suejacks@...> wrote:

> Hi Connie,

> My hepatologist thinks it is a possibility. He felt

> the way my platelets

> dropped, 100,000 from one blood test to the next

> that it is not just liver

> disease. He said with cirrhosis you would expect a

> gradual decrease. My

> platelets had rebounded to 90,000, but are back at

> 47,000. New hepatologist

> and very thourough. So I am off to a hemotologist

> in two weeks.

>

> Thanks

> Sue

>

>

>

__________________________________________________

[Guest guest]

Hi Pat,

I don't know a lot, but since my doc thinks there is a possibility I have

it, I started doing research. It is an auto immune disease, where the

immune system kicks into high gear, but recognizes the platelets as the bad

guys and destroys them. My first doc told me my low platelets were because

of the liver disease (cirrhosis). My new doc says the way the platelets

fell, does not indicate the low platelets is from my liver disease. He said

that liver disease would cause a slower decrease. Mine dropped quickly. He

is sending me to a hemotologist, and redoing ultrasound. It can also cause

a rash, of little purple dots.

Sue

[Guest guest]

Hi all...

I also was diagnosed about 4 yrs ago with ITP....Just was getting my regular check up and blood work done....I had spent most of the summer in pants all the time because it looked like I had been beat up...My legs were a mess....I have always bruised easily but this was crazy...When my doctor(she is really a nurse practioner..but I really like her)..confirmed with one of the head doctors in the group he asked if maybe there was some abuse going on...that is how bad I looked...My husband is a pussycat and would never even think to yell at me.....Once she convinced him that that was not the case they looked into the labs.....I was sent to a Hemotologist....He talked to us about the chance that I might have luekemia....I was scheduled for a bone marrow test and bone biopsy....They were both fine and continued to go to him for about a year having my Playlets monitored....They were 43,000 in the beginning....they finally did creep up...They are now about 150,000...

There was NEVER any mention of removing my spleen...He didn't even treat me with any meds because he said that alot of times it does correct itself with out help...just time...but if it didn't get better I would have started on prednisone...

So I quess this ITP thing is something a little more common....When I mentioned this to Tys doctors(the fact that I had ITP) they didn't seem real concerned...

I don't bruise as bad now and can wear shorts...to everyone horror..and short shelved shirts....and my poor husband is not being accused anymore...LOL...

Luanne Ty's mom

[Guest guest]

Of course, the most efficacious way of doing this is

to have treatment for the underlying condition.

Apart from that, there are some things you might try

after talking to your doctor. I tried vitamins K and

D3, and this seemed to bring up my modestly low

platelet count over 100,000.

Other things to ask your doctor about can be found at

www.itppeople.com. This is a general site for ITP,

not restricted to those with CLL.

This can be a very serious problem, and you need to be

under a doctor's care.

--- Bischoff <wllmbischoff@...> wrote:

> What treatments have been successful treating and

> getting PLTs back to normal for ITP in CLL patients

> ... Thanks

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[Guest guest]

what dose of D3 and Vitamin K are you taking? I read if you take

a high dose of Vitamin D3 you should be taking Vanadium too. I only

take a very low dose of both to play it safe. Maybe I am missing out on

the benefits as my Platelets stay in the 60s.

[Guest guest]

I had this immediately after my implant surgery recovery period. I was clueless about it and never saw a doctor for it. It lasted about a week or so and then went away. Little did I know it was a sign of worse things to come due to my implants.

http://www.nhlbi.nih.gov/health/dci/Diseases/Itp/ITP_WhatIs.html

What Is Idiopathic Thrombocytopenic Purpura?

Idiopathic thrombocytopenic purpura (ITP) is a bleeding condition in which the blood doesn't clot as it should. This is due to a low number of blood cells called platelets (PLATE-lets).

Platelets are also called thrombocytes (THROM-bo-sites), and they're made in your bone marrow (along with other kinds of blood cells). Platelets circulate through the blood vessels and help stop bleeding by sticking together (clotting) to seal small cuts or breaks.

Idiopathic (id-ee-o-PATH-ick) means that the cause of the disease or condition isn't known. Thrombocytopenic (throm-bo-cy-toe-PEE-nick) means there is a lower-than-normal number of platelets in the blood. Purpura (PURR-purr-ah) are purple bruises caused by bleeding under the skin. More extensive bleeding can create a three-dimensional mass called a hematoma (he-ma-TO-ma).

Purpura

The photograph show purpura (bruises) in the skin. Bleeding under the skin causes the purple, brown, and red color of the purpura.

People who have ITP often have purple bruises that appear on the skin or on the mucous membranes (for example, in the mouth). The bruises mean that bleeding has occurred in small blood vessels under the skin. A person who has ITP also may have bleeding that results in tiny red or purple dots on the skin. These dots, often seen on the lower legs, are called petechiae (peh-TEE-kee-ay). Petechiae may look like a rash.

People with ITP may have nosebleeds, bleeding from the gums when they have dental work done, or other bleeding that's hard to stop. Women with ITP may have heavy menstrual bleeding.

Bleeding in the brain as a result of ITP is very rare, but can be life threatening if it occurs.

In most cases, the body's immune system is thought to cause ITP. Normally your immune system helps your body fight off infections and diseases, but if you have ITP, your immune system attacks and destroys its own platelets—for an unknown reason.

Types of Idiopathic Thrombocytopenic Purpura

There are two types of ITP: acute (temporary or short-term) and chronic (long-lasting).

Acute ITP generally lasts less than 6 months. It mainly occurs in children, both boys and girls, and is the most common type of ITP. It often occurs after an infection caused by a virus.

Chronic ITP is long-lasting (6 months or longer) and mostly affects adults. However, some teenagers and even younger children can get this type of ITP. Chronic ITP affects women 2 to 3 times more often than men. Treatment depends on how severe the bleeding symptoms are and the platelet count. In mild cases, treatment may not be needed.

Outlook

For most children and adults, ITP isn't a serious or life-threatening condition.

Acute ITP in children often goes away on its own within a few weeks or months and doesn't return. In 80 percent of children who have ITP, the platelet count returns to normal within 6 to 12 months. Treatment may not be needed. A small number of children, about 5 percent, whose ITP doesn't go away on its own may need to have further medical or surgical treatment.

Chronic ITP will vary with each individual and can last many years. Even people who have severe forms of chronic ITP can live for decades. Most people with chronic ITP are able at some point to stop treatment and keep a safe platelet count.

[Guest guest]

I forgot to mention that there is a relation between Helicobacter Pylori, the

bug responsible for stomach ulcers, and which large numbers of the population

have without knowing it, and ITP. If one winds up with ITP, get checked for H.

Pylori. I had it without knowing it and got rid of it as part of the ITP

recovery. Then have family checked out also.

G.