Lman - curious what you decided to do!

I got two bracelets from Amazon. On front has my name and ITP low platelets and no BP cuff (because of lymph removal.)
On the back has hubbys name and phone and my blood type and dr. I wear every time I leave the house.

Count now 5. Avatrombopag reinstated at 20mg on alternate days 

Sorry It's been so long since I replied if anyone reads this I did not have ITP, I had aplastic anemia(bone Marrow Failure). I had to do a bone marrow transplant in February, Right now my Platelets are around 200. This forum was a big help during my early diagnosis. Promatca helped to hold platelets transfused until I got my bone marrow transplant. I'm waiting for other blood counts to continue to rise as I type this. It's going to be a tough journey but thank you everyone here for your help the last year.

Hello ITP forum.  I am so happy that this group exists.   I am new here and working on research with my sister.   She has become a medical mystery.  She has a low platelet count, most of her platelets are immature and her blood will not clot.  She has almost died twice in the past 2 years before we realized that she had this issue (whatever it is).  The issue has developed over the past 2-3 years.  When you look at all the many cancer and non-cancerous clotting deficiency diseases, she has some symptoms but not enough of any pattern to have a diagnosis.  She has had loads of tests, including factor tests and bone marrow biopsies, multiple times.  Four different doctors at different medical centers have given up on her, including Moffit in Tampa.  Her arms all full of bruises from simple pressure, and her blood will not clot.  She has been ruled out for MDS.  She ‘may’ have ITP but has only a couple of the symptoms.   I am here asking advice.  When your case is not clear cut, where do you turn?  We are in the Tampa/St Pete area of Florida, and hunting for a Hematologist or any other doctors who will engage
with the puzzle and stick with it.    I even wonder if she had a reaction to the Covid vaccine, but who can help prove anything? We feel caught in the medical machine, but with no answers.  Can anyone offer advice?

Talk about a roller coaster - any thoughts on why your count jumped before?

What do your doctors mean when they say only a couple of symptoms of ITP?  ITP generally means low platelets.  I was diagnosed because of bruising.  I had 3 small bruises in the same area where I had gotten shots after a surgery back in 2004 so my doctor sent for blood work.
Can't answer the Covid question.
Hopefully someone else will chime in with more advice.

OMG mrsb!  That's quite a drop!  I wish your doctors could find something that would put you in your safe zone.  You certainly are having a rough go of it right now.
I hope things even out for you soon, mrsb.

Hi, I mean the list of symptoms that you find on internet searches.  She only has the top 2 and none of the others
How does one get a definitive diagnosis of ITP?  None of her doctors said she has this 'disease' if it is considered to be a disease.
And how is it treated if she does?

Bruising
Prolonged bleeding from wounds
Visible red or purple dots
Spontaneous nosebleeds
Bleeding gums, often during dental work
Blood in urine or stools
Unusually heavy menstrual flow
Feeling tired or fatigued

What is your sister's platelet count??  Mine were 11k and dropping when diagnosed back in 1989.

One doesn't have to have everything thing you listed to have an ITP diagnosis -  I had the red dots on torso, I had bruises all over, none of the others you mentioned.  Platelet count is what counts.

ITPer does have immature platelets because their platelets are being destroyed in the spleen or other blood cleaning locations in the body. Immature platelets are large. 

Isn't there a Mayo Clinic in Florida?   Isn't Moffitt just for cancer patients? 
      From the Mayo Clinic:
Is ITP considered a bleeding disorder?
Immune thrombocytopenia (ITP) is a disorder that can lead to easy or excessive bruising and bleeding. The bleeding results from unusually low levels of platelets — the cells that help blood clot.Feb 25, 2021



I hope your sister can be diagnosed with whatever it is she has and be on the road to recovery.

My count was 31 yesterday. Be interesting to see what happens tomorrow but doubt I'll get the result before Tuesday due to the 4 day  Easter weekend. I shall continue on my cocktail of Fostamtinib, Avatrombopag and weaning off Pred. 

Hi,
I've been having stomach problems for a couple years now and decided to try a natural treatment plan prescribed by a private gp who is also specializing in gastroenterology. Can such supplements lower your platelet count  A LOT?  I know f.e. ginger can lower it somewhat, but I'm not aware it would be dangerous? My counts have been holding up between 100 & 150 without ITP meds lately, but they have been as low as 13 before and it is still unclear why they decreased or increased, increase could be high CRP... Now I realize I need to find a doctor who can help me with this in person, but maybe some of you can give me their opinion in the meantime. I keep getting referred to the next to the next to the next, I can't afford paying a lot more private.
F.e. I'm guessing my hema could check my platelet count more often if it is necessary, but she says my platelets have been pretty high, she won't check them more than a couple times a year. She didn't take the treatment plan into consideration though, her opinion was I shouldn't waste my money. The reason I decided to try this treatment plan is I have had diarrhea and been throwing up almost daily for 2 years and nothing so far really helped to stop this completely, so why not try this.

The private gp said I should keep checking my platelet counts, while on the following supplements:
- broccoli complex
- oregano oil (says on the package because of menstruation inducing effects not recommended during pregnancy, does it have to do with platelets?)
- neem (500mg)
- ginger (that might be the issue? 500mg/ day?)
- some prebiotics ("Prebioma Sensitive")
- some other things that are not an issue (l-glutamin etc)

What a yo-yo rebound!  Better than 5 though!  I hope they keep climbing, but not too high!

Target count is >50 which is fine by me. 

Hi, and thank you for the reply

Her platelet count can hover close to normal or be lower than normal, but never extremely low
The platelets she has are not mature, are lower by percent than they should be and do not function properly
Moffitt did say she did not have MDS, and her symptoms otherwise do not suggest any obvious blood cancer.
That is why everyone seems to give up on her.  The symptoms do not fall in a neat pattern.

We have studied all of the prescription drugs she is on and none seem to affect platelets.
My question is what would cause platelets to not mature and not function properly?

My son was diagnosed in October 22 with ITP. His platelets were 23000. He started with dexamethasone and IVIG. He did not respond. Was given Nplate and responded and released from hospital. The N-plate stopped working. To make a long story short, he has been hospitalized for two months. His platelets are anywhere from 2000 to 12000 with the 12000 being short lived. He is currently on Doptelet and Fostamatinib (3 weeks) with no response. He also had a partial splenic embolization (post 1 week). He receives daily platelet and red blood cells (low hemoglobin). Platelets are not working. He also has a GI oozing causing bloody stools. 

Doctors have reached out to associates at other hospitals with no additional answers.

any help would be appreciated.

@Reeves29928  Not sure if it helps but I have ITP for the past 4 years and my platelets have always been in  the 20K range. I have tried ivIG once but the count dropped after 3 weeks . After that I didn't want to go for any more treatments,  In my case I felt that the treatments and constant blood count checks were making the condition worsen even more. As a mom it should be really tough for you, please try not to worry too much. As soon as they figure out something that works for him just to maintain at the 25-35K range , this will all be behind him.  

Most of us with ITP don't know what caused it.  That's why it was called "idiopathic" when I was first diagnosed.  Now it's called "Immune".
For me personally, it has never bothered me to not know what caused it.
Have you found a hematologist yet?

Thank you for your kind words. Doctors have run out of treatments. This morning platelets were at 3000. Praying for a miracle.

I had blood work done 5 weeks ago and saw the doctor yesterday.  Platelet count is good and I don't even ask the number any more.
We've also been trying to regulate my thyroid.  Yesterday, he said he was sending me for an ultra sound because he thinks I have a cyst on it. He even felt my throat which he has never done before!  According to my sister, who works for a doctor, I could be waiting for the ultra sound for 6 to 9 months.  We shall see how long it takes for me to get an appointment.

i to get a few skin tags i want to get removed my count is 23 is this a good idea .that count is normal for me 
thanks 

pdsa.org/conventional.html 
@Reeves29928 There are lots more treatment options see the link above. 

Have you considered the over-the-counter skin tag removers?  My husband has used them in the past.

You need to see a haematologist who is experienced in treating ITP because it's not normal protocol to do platelet transfusions for ITP. In fact it can make the situation worse as it makes the body do everything it can to eliminate the new platelets. Good luck.

i thought of it but because of my itp i decided not to

Count now 134. Avatrombopag reduced to every 3rd day
 

Wow!  That's a good count, but I know you're more comfortable in the 50 range.
Happy Easter!

Hello, sorry I missed this email this week.  Because she has some symptoms and no doctor (including 4 major medical centers) has said that she has ITP, we don't want to assume that ITP is the answer.  Idiopathic makes it sounds like the doctors know something when they really have no answer.  I had Idiopathic sinusitis for years until one doctor finally figured it out.  I came to this forum hoping that others might have physician recommendations or may have a similar experience and even possibly a direction that we could follow. We are all in the same or similar boat looking for any guidance or clues that others may have figured out.  Thank you all for at least replying.

Thank you for your response. We do have a benign hematologist making the decisions. They are transfusing platelets due to the GI bleed. They do not last long but they are buying time waiting for something to work.

Do you know the number of her platelet counts?  Like mine were 11,000 & dropping when diagnosed - since then they have been all over the place, going in the normal range a few times.   We like to see numbers.

What do you mean by "lower by percent than they should be" ?