Low platelet count - how low would make you worry

[hepcandme]

I recently had 2 surgeries - my platelet count the first time was 70 (early December) . This last time, a week ago, it was 59

During both procedures, my surgeon gave me platelets intravenously during the surgery so clearly she was concerned with the low number. I always think of normal as around 140 but is 59 Too low? Below 50?

Have people monitored platelet levels exclusively while on treatment? How do you tell if they are dropping? Do you feel or have symptoms of anemia?

I'm done with the surgeries, btw
Thank you to everyone for their support and thoughts

[keepingOnkeepingOn]

Last count my platelets were 43. That was 3 months ago. I'm waiting on the recent labs being uploaded into my system so I can check them. I hope they go up.
Still not able to eat eggs, salt, coffee and other things I like. I guess it will be never. I am concerned about my platelets. BUT I have had no nose bleeds this winter which is unheard of for me. So we'll see. I hate this virus and what it did to my system. I hope it never comes back. I'm thinking I'll relax about it after a year of being rid of it.

[1bucky]

Hello,
50,000 is the cut off point at my hospital. The last biopsy I had my platelets were 49,000 but my INR time was perfect so the team agreed to go ahead with the procedure. One thing I learned from my IDS is that it is difficult to get a true and accurate platelet count when a person has an enlarge spleen that is trapping/destroying platelets. Some platelets are large or irregular shaped and this causing a problem because the labs are counting perfectly shaped ones. According to my IDS the INR time is more important.

Bucky

[Livelife777]

Hi guys.   Regarding my statement a rise of 40 points on the platelets after SVR.  That # is reflected after several years post Tx, not immediately. It honestly takes many years ( up to 10 or more) for the ravages of Hep C to become significant if at all.
If we are one of the lucky ones the platelets will gradually rise.  Patience is a virtue and I plan on sticking around to find out!
.....Ki,

[alico222]

Ho there..
Just wondering if you ever had liver biopsy with platelets at 117 or 100 , and it was ok?

This is my position..
I'm in uk due to have a biopsy with platelets just over 100.. And quite frankly I'm scared!!!
Scared of a bleed!!!

Anyone's experiences welcome!
Thanks
Alico

[flyinlynn]

Oops typo

1000 Mg not 100 Mg

[flyinlynn]

I hope my platelets rise 40 points post treatment that would have me in normal range lol.

That was my concern in the first place and my hesitancy to take Riba as the same thing happend when I was taking Riba and interferon. The thought was th edrop in HGB was from the combo but it seems it was from the riba

My platelets continued to fall to 9.3 after 3 weeks on TX with riba.

I only have Riba Pack 600/600 so all pills are 600 Mg. As of last Friday my instructions were to take 1 each 600 Mg a day while wating for express scripts to send Riba Pack 600/400.

I called them several times as I am now under dosing and it really should be a divided dose as well.

I finally called my inside contact at express scripts today and the new script is being shipped over night. I will have it sometime tomorrow.

Based on my somewhat dramatic drop in HGB in just 3 weeks I kinda think 100 Mg may be too much also but we shall see.

Feeling better on 600 Mg a day and kinda curious to see my HGB test result from this past Tuesday 2/17 after being on the 600 Mg for 5 days at that point.

Should know soon
Best to all the warriors
Lynn

[Livelife777]

Linda.  I just read an article pertaining to Platelet Counts post SVR for Cirrhotics.  It was an older study but one that should have similar responses based on current Tx.
It did indicate that on average platelets rose post SVR 40 points.  
Hope they are wrong!
.....Kim

[Livelife777]

Lynn.   So sorry for the delayed response as I just now noticed your question.
Seems you have a significant drop in Hmg and at only the 2 week mark. Mine never dramatically  dropped until week 8-10 and the lowest it went was 10.2.
My team at Mayo assured me that they would slightly rise week 10-12 and were not concerned.  They were right as they rose to 10.6.
Yours on the other hand are somewhat worrisome as they dropped so quickly.  You may have to unfortunately decrease your dosage as being to low can be dangerous.  Keep in mind the stats Howie showed us regarding SVR and reduction.  In the final analysis it was not relevant to outcome.
The hardest time on Tx was when my Hmg was teetering on 9.  The fatigue was pretty overwhelming and I couldn't get out of bed for days.  Think its best you cut the dose even tho I understand how invested you are in curing.
Wish I could say otherwise.  Let me know what you decide.
.......Kim

[michniak]

The reason I posted here was because of the low platlet discussion, I didn't realize that my story didn't belong because it was 'post' treatment, I see what you are saying.  However, I would like to add when my Mom was sick, following the Solvadi Olysio I was looking for answers everywhere... I had only wished I could find something in a 'currently on treatment' forum...as I was looking for help.  Please accept my apologies if I have upset anyone, that is not my intent... but I do believe by posting my story, that I may help someone.  Is that what these forums are all about?... discussions. ... and to seek out answers and experiences from all kinds of people?  Again, I am deeply sorry if I upset you.. not my intent.  

[michniak]

a complication of Solvadi / Olysio... which resulted in her failing health.  Just wanted to clear that up, thanks.

[flyinlynn]

Hi Kim

Very thankful you posted that. I just go my 2 week on Riba results and while my HGB fell from 13.7 before riba to 10.3 after just 2 weeks so I am officially anemic my platelet count jumped from my usual 80-90 range to 143 highest I had seen in 5 years.

I figured it was not a real thing just due to the riba thanks for giving me a warning it will fall back again so I don't get my hopes up too much to have them knocked down again.

Did you also become anemic on riba? If you did how long till your HGB and RBC counts got back into normal range?

Thanks
Lynn

[Livelife777]

Michniak I'm so very sorry for the loss of your mom.  I know how sad it is to lose your best friend.  Im sending you peace and comfort.

Need to also make a comment on platelets and Tx.  This is my own personal experience, and may not reflect others.
When I started Sovaldi/Riba (1,200 mg) in Jan 2014 my platelets were 125.
Previous to then they had always been below normal, but never less then 100.  During my 12 weeks of Tx, my platelets went up into the 200 range.  At one point they actually reached 268 and I was ecstatic.  For me it meant that my cirrhosis was reversing and my liver was healing the injury of Hep C.
4 weeks post Tx my bloodwork showed that my platelets were 118.  It was devastating to say the least as to me it signified the virus was returning even tho I was still UND.
In my situation as it was further revealed, the Riba was responsible for the sudden surge in platelet count.  It seems that once Tx is over your platelets will then return to where they were prior to starting Tx.  Unfortunately the high platelet count during Tx was only a reflection of the meds I was on.
This may not happen to others but felt the need to share as it was a real let down and a very scary confusing time.  Since Tx was so new, no one had answers as to why this occurred until others came forward with the same experience.
It's been 1 years since I started this journey.  My platelets today are holding steady at 134.  Am hoping the trend continues upward as the virus was eliminated and am now cured.  Only time will tell if regeneration will occur without Hep C in my life and also in yours.
As always, my best to all.
......Kim

[dontworry_behappy1]

The person who posted this question has/had serious health problems. She
is looking for answers concerning her upcoming treatment and current status.
______________________________________

You are taking away from her thread that can help many people and I'm asking you to post where you can get the help you need.  "hepcanme" has
hepatitis C and recently cancer.   This is her thread.  

I will post this final response.  Below is your own statement concerning you
mother's health status.  Your mother's doctor seems to have been speechless that his longtime patient had Waldenstrom.   Before you continue to want to kill the messenger you really need to take the time to
read what Waldenstrom does to your body.   Your mother died from a massive stroke as a complication from her failing health.   She had Hepatitis C which also brings on addition health issues.  Your mother died
of Cancer which could have been the results of having Hepatitis C.
  
Your mother's doctor was aware of the extraheptic illnesses brought on by Hepatitis C.  You might want to look that up too.  Hepatitis C rarely kills....its the other stuff you can get as a result of having Hepatitis C.   I do understand your frustration.  But you mother would have still progressed to Waldenstrom in the natural process. Which would have contributed to her massive stroke that resulted in death.  The people posting on this forum are looking to treat there Hepatitis C and hope of a cure.  These current new medications are doing that.  I too have been cured of Hepatitis
C and reduced my chances of dying of liver cancer and a whole bunch of
blood related illnesses.  

Below is your own words

michniak  
Nov 09, 2014
To: Dbzc2
My Mom was on Solvadi/Olysio.  She was 80.  Her doctor put her on it in April.  She was in remission from Lymphoma.  6 weeks into treatment she got really sick. 12 weeks she was sicker and couldn't walk.  The doctors couldn't find out what was wrong.  We were hysterical going to doctors, blood test, bone marrows, scans, nothing was coming up.

End of July she collapsed at home and was hospitalized.  They found blood viscosity, her blood was thick, etc, etc.  She had plasmapheresis and platelet transfusion and was discharged.  She had weekly blood draws and had bi weekly platlet transfusions cause she could not keep her platelet count up. She was bleeding from her gums and nose all the time.  It was horrible.  She couldn't sleep, she needed a walker, she no longer drove.  When we look back at the summer now we realize she was not getting better, in fact she was dying :(

In October she was hospitalized again and needed plasmapherisis.  On October 6 she was diagnosed with Waldenstrom, a type of cancer.  She was so excited to finally have a diagnosis.

That same night, while still having the port in her neck for the plasmapheris, she had a massive stroke to her brainstem.  We all rushed to the hospital and were able to see her awake for a little while trying to talk, etc... she was aware of her right side being paralyzed, etc.. it was a nightmare.   She started to 'fall asleep' we thought but really she was losing consciousness.  

She died 10/13/14.

We are in a lot of pain and grieving and we have come to believe in hindsight that yes this medicine compromised her auto immune system so much that another form of cancer returned.  At 80 years old she never rebounded.  Prior to treatment she was an active and independent 80 year old.

We are heartbroken and mad.  Why that doctor put her on Solvadi and Olysio at 80yo we will never know.  I've been kicked off of forums telling my story.  Noone wants to hear the truth of my Mom.  I'm sorry we don't have a positive experience to share, but perhaps when I was desperate looking for answers on the forums and saw a story like Mom, we would have had more information and could have saved our Mom.

These drugs are not to be messed around with.  I'm so glad to hear what your sister wrote about the auto immune being compromised.. it gives us validation that this in fact happened to our Mom.

Thank you.

Please post on the Post Hepatitis C Forum if you wish to continue

Here is a link to your thread.

http://www.medhelp.org/posts/Hepatitis-C-Post-Treatment-Issues/Post-SO-since-June-27th-and-all-is-not-so-great/show/2296388

You might also what to post on the below referenced link


http://www.medhelp.org/forums/Grief--Loss/show/12

[michniak]

the reason I posted on this was because my mother's condition was sever, due to her low platlets.  I never knew anything about this until she got sick, and this ultimately was the reason for her fatal stroke.  low platlets = thick blood = stroke potential.  that's why I am here... to help others, so no one has to live through what we did with our mom.

not here to cause problems.. not here to blame... her to help.  i'm hoping in my story that can be achieved.

[michniak]

no one knows for sure what caused her illness after taking Solvadi / Olysio.  All we know is that as of January 2014, her lymphoma was in full remission, and we were never told she had sever cirrohosis.  Her hep doctor put her on Solvadi / Olysio and not really looking into it, we just trusted him and said sure.  Biggest mistake of our life.

I

[Dee1956]

Thanks for the reminder that there is a difference between anemia and low platelets. I often forget. :)

[Dee1956]

Linda the good thing about treating is they will keep a close eye on your platelets while you treat. Mine were tested every week while on Incivek.
Lynn I am so happy to hear you platelets are so close to normal for the first time in years. Despite being on tx you are doing great!  You go girl :
Mic . I would like to express my sorrow to you again over losing your Mom. I am so sorry.  I still remember the woman that came on here to say she lost her husband during Incivek.  It was a shock

[AugustineMama]

I have pretty low platelets and eventually though I probably have cured the hepC as I was 12-week EOT UND my platelets continue to go down; at 85 now and I also have enlarged spleen. I was told this goes hand-in-hand with stage 4 cirrhosis also which is where I am at . Too early for transplant, but just hoping something kicks in and liver bounces back some, even though they are not very assuring that it will. I will still hope though.

[dontworry_behappy1]

I was so moved by your story that I went back and read your posts.  The reason your mother's doctor treated your mother's Hepatitis C?  I'm no doctor but have experience with blood cancers.  

Your mother was in remission from Lymphoma (a cancer that has been connected to Hepatitis C).   Getting rid of the Hepatitis C could have benefited your mother.

Your mother died of waldenstrom. Which is a rare cancer.   Sure this was hard to detect and she was on hepatitis C treatment which caused confusion.

I'm really sorry that your in so much pain.  But your mother was also 80 years old and has past health issues with her blood.   The doctor's did find out she had another health issue while she was on treatment.  

I hope this helps you have peace.  

[dontworry_behappy1]

Sorry about your mother.  As "flyinlynn" posted... there are many causes of low platelets.   The problem with drug therapies is there are many side effects that can happen.  These are new drug therapies that still has an unknown possibility.  I personally treated with Incivek that has been taken off the market.  That didn't happen before many treated with this very toxic therapy.
Some people had horrible side effects and even a few people died.  This is very sad.  But many were cured of Hepatitis C with Incivek.   They also found that a much smaller dose of Incivek would have worked.   So we all were given a overdose to cure our hepatitis C.  

Again,  I want to say how sorry I am about your mother.  It's extremely hard to
go through the loss of a mother.  I lost mine at 20.   From batched cancer treatment and I too watched in horror.   I know how difficult this is for you.  But there is always a chance that things can go right and be ok.....and always a chance things can go terribly wrong.   In the cause of our mothers that's exactly what happened.  It doesn't happen to everyone but why did it have to be our mothers?  I'm living today because my mother came before me and forged the way for breast cancer to stop killing women at an alarming rate.
I watched her suffer more than any could imagin.  I know your pain.

My mother asked that her body be donated to research.  As she wanted to at least leave someway to help us in the future.   She did....I'm a 15 year breast cancer survivor.

Michniak,
Not everything is absolute.  Things always don't go as planned.  Everything is not always as it appears.   We are all of different makeup and sometimes the effects of drugs work differently on your body.  There is weaknesses that set you aside from others.   But at the same time there are others who are cured and are living proof these drugs do work.  

If you read what "flyinglynn wrote the causes are many for low platelets.  I have never got over the loss of my mother.   What the medical profession did to her.  But did they really know what was happening at the time?   No they didn't!   It wasn't till years later that breast cancer became a cancer that we would survive.   The women who posted this thread is proof of that advanced technology in the treatment of breast cancer.   She recently survived breast cancer.  

Respectfully Sorry For Your Loss

[flyinlynn]

Dozens of causes of low platelets

What Causes Thrombocytopenia?

Many factors can cause thrombocytopenia (a low platelet count). The condition can be inherited or acquired. "Inherited" means your parents pass the gene for the condition to you. "Acquired" means you aren't born with the condition, but you develop it. Sometimes the cause of thrombocytopenia isn't known.

In general, a low platelet count occurs because:

The body's bone marrow doesn't make enough platelets.
The bone marrow makes enough platelets, but the body destroys them or uses them up.
The spleen holds on to too many platelets.
A combination of the above factors also may cause a low platelet count.

The Bone Marrow Doesn't Make Enough Platelets

Bone marrow is the sponge-like tissue inside the bones. It contains stem cells that develop into red blood cells, white blood cells, and platelets. When stem cells are damaged, they don't grow into healthy blood cells.

Many conditions and factors can damage stem cells.

Cancer

Cancer, such as leukemia (lu-KE-me-ah) or lymphoma (lim-FO-ma), can damage the bone marrow and destroy blood stem cells. Cancer treatments, such as radiation and chemotherapy, also destroy the stem cells.

Aplastic Anemia

Aplastic anemia is a rare, serious blood disorder in which the bone marrow stops making enough new blood cells. This lowers the number of platelets in your blood.

Toxic Chemicals

Exposure to toxic chemicals—such as pesticides, arsenic, and benzene—can slow the production of platelets.

Medicines

Some medicines, such as diuretics and chloramphenicol, can slow the production of platelets. Chloramphenicol (an antibiotic) rarely is used in the United States.

Common over-the-counter medicines, such as aspirin or ibuprofen, also can affect platelets.

Alcohol

Alcohol also slows the production of platelets. A temporary drop in the platelet count is common among heavy drinkers, especially if they're eating foods that are low in iron, vitamin B12, or folate.

Viruses

Chickenpox, mumps, rubella, Epstein-Barr virus, or parvovirus can decrease your platelet count for a while. People who have AIDS often develop thrombocytopenia.

Genetic Conditions

Some genetic conditions can cause low numbers of platelets in the blood. Examples include Wiskott-Aldrich and May-Hegglin syndromes.

The Body Destroys Its Own Platelets

A low platelet count can occur even if the bone marrow makes enough platelets. The body may destroy its own platelets due to autoimmune diseases, certain medicines, infections, surgery, pregnancy, and some conditions that cause too much blood clotting.

Autoimmune Diseases

Autoimmune diseases occur if the body's immune system mistakenly attacks healthy cells in the body. If an autoimmune disease destroys the body's platelets, thrombocytopenia can occur.

One example of this type of autoimmune disease is immune thrombocytopenia (ITP). ITP is a bleeding disorder in which the blood doesn't clot as it should. An autoimmune response is thought to cause most cases of 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. Why this happens isn't known. (ITP also may occur if the immune system attacks your bone marrow, which makes platelets.)

Other autoimmune diseases that destroy platelets include lupus and rheumatoid arthritis.

Medicines

A reaction to medicine can confuse your body and cause it to destroy its platelets. Examples of medicines that may cause this to happen include quinine; antibiotics that contain sulfa; and some medicines for seizures, such as Dilantin,® vancomycin, and rifampin. (Quinine is a substance often found in tonic water and nutritional health products.)

Heparin is a medicine commonly used to prevent blood clots. But an immune reaction may trigger the medicine to cause blood clots and thrombocytopenia. This condition is called heparin-induced thrombocytopenia (HIT). HIT rarely occurs outside of a hospital.

In HIT, the body's immune system attacks a substance formed by heparin and a protein on the surface of the platelets. This attack activates the platelets and they start to form blood clots.

Blood clots can form deep in the legs (deep vein thrombosis), or they can break loose and travel to the lungs (pulmonary embolism).

Infection

A low platelet count can occur after blood poisoning from a widespread bacterial infection. A virus, such as mononucleosis or cytomegalovirus, also can cause a low platelet count.

Surgery

Platelets can be destroyed when they pass through man-made heart valves, blood vessel grafts, or machines and tubing used for blood transfusions or bypass surgery.

Pregnancy

About 5 percent of pregnant women develop mild thrombocytopenia when they're close to delivery. The exact cause isn't known for sure.

Rare and Serious Conditions That Cause Blood Clots

Some rare and serious conditions can cause a low platelet count. Two examples are thrombotic thrombocytopenic purpura (TTP) and disseminated intravascular coagulation (DIC).

TTP is a rare blood condition. It causes blood clots to form in the body's small blood vessels, including vessels in the brains, kidneys, and heart.

DIC is a rare complication of pregnancy, severe infections, or severe trauma. Tiny blood clots form suddenly throughout the body.

In both conditions, the blood clots use up many of the blood's platelets.

The Spleen Holds On to Too Many Platelets

Usually, one-third of the body's platelets are held in the spleen. If the spleen is enlarged, it will hold on to too many platelets. This means that not enough platelets will circulate in the blood.

An enlarged spleen often is due to cancer or severe liver disease, such as cirrhosis (sir-RO-sis). Cirrhosis is a disease in which the liver is scarred. This prevents it from working well.

An enlarged spleen also might be due to a bone marrow condition, such as myelofibrosis (MI-eh-lo-fi-BRO-sis). With this condition, the bone marrow is scarred and isn't able to make blood cells.

[hepcandme]

Lynn, congrats!

You're swimmin in platelets. That is so awesome!

You go girl!

[JimmyMose]

My personal opinion is I don't agree with the way you tell your story.
Maybe describing the details and saying something like.  So far in my opinion because no other cause has been found for the low platelets that caused a blood disorder that caused my mother death.   It began after she started tx with Sovaldi and Olysio,  the treatment providers weren't that concerned so my best guess so far it was Sovaldi and Olysio treatment and or the failure of the treatment providers to stop tx sooner that caused her death.

I might agree that there should be a medical investagation into the cause of her death.

I will not respond further in this thread about your case.

[flyinlynn]

Well as this medicine is saving my life I will.

Sorry for you loss of your mother but her experience was not that of the majority of patients.

How old was she did she have advanced liver disease or other health conditions that also could have caused her passing or maybe an increased sensitivity to Sovaldi?