Well that is much better mrsb !!
Hope that new count is just as good or even better!!

What does your hematologist say??

Don't know what my count was, it was not 23k though but I've had a melanoma removed from forearm, a biopsy & then MOHS surgery on my nose, a couple things frozen all in the past 3 years.  My only problem was due to the thin arm skin from prednisone & age, one of the stitches tore the skin.  

Cindy can you get into an endocrinologist sooner??   I'd much rather have a specialist than a regular MD take care of something that isn't their norm!   My endo always feels my neck/thyroid area when I see her.  

I've been on thyroid med, oh gosh has it been since 2002?   Anyway we have to tweak my med every so often, and I pay a lot since I have to have the brand name not the generic. 

That is a long time to wait for an ultra sound - and here I thought waiting a month to see a physical therapist was bad.
I'm sorry - is there a cancellation list they can put you on to get in sooner if someone cancels an appointment?
Hang in there - I know it isn't fun if the thyroid is out of whack!

You did not see this new gp/gastroenterologist in person?

A wise doctor told me many years ago:   "Nothing is non-toxic to everyone"
I say that goes for natural stuff too - natural doesn't mean it is ok for everyone.

i do not have a hematologist and now they have laser removal just not sure if it will affect my itp

Mel, the pandemic really messed with our medical system.  Plus we have a Premier who doesn't want to pay the nurses what they are worth.  Just a few months ago, the nurses went on strike for a couple of weeks over asking for a one percent wage increase and our Premier said no.  Then he gave himself and the party a 5% increase.
Cathy says even getting into a specialist can take a while.  She has the same issues when she books appointments with specialists.
Our wait times for almost everything is behind right now.  Things are starting to get better, but it is slow.
This is my 3rd doctor since having thyroid issues.  The one who diagnosed me couldn't believe I walked into his office under my own steam.  He said most people with counts as low as mine were would be in the hospital.  I was under control for a long time.  It's just the last couple of years that it's acting up this bad.

Who has had a blood blister in their mouth from low platelets??

tonymarinello
What count are you defining as low?  If mine is in single figures I always get oral blood blisters.  

Oh Cindy I am sorry!  Do you mean you are hypOthyroid now?  (low counts would mean hypERthyroid - and when I'm hyperT I could have danced a jig & done cartwheels going into the office)

You didn't have to change brands of your thyroid med right?  

Shame on Mr. Trudeau, the nurses are the backbone of medical care and are not paid enough for what they do!!   But it did not surprise me to hear he gave himself a 5% increase.

Hello All .  . . I am a ITP patient for 13 years. And I was recently (January) diagnosed with AML (Acute Myeloid Leukemia). I am on Vidaza and Venclexta treatment for the last three months and my bloodwork has gone down drastically. I get transfusions 2 times a week for platelets and once a month for hemoglobin. All of doctors and "experts" say you really cannot raise platelets (or any blood counts by eating differently)  by eating differently. Is this true. And , if so, what can I do to raise my platelets. They are constantly in the teens and 20's.. . .sometimes single digits.  My white blood count is .7 (That's point 7 not the whole number seven) and my hemoglobin is 8.6.

Right now I seem to be yo-yoing.  Too high one test, too low the next.  Right now I am on Sythroid, but have also been on Levothyroxin.  I've been on the Synthroid for years now.  The doses change of course.
It's not PM Trudeau who doesn't care.  Like you guys in the States with State Governors, up here we have Provincial Premiers.  Joe Biden is your President and Justin Trudeau is our Prime Minister.
Trudeau tried to give the Provinces extra money toward the health care system, but our Premier said no, we didn't need it.  This is the same man who took my care giver extra money away when his party got in to run my Province.  Shortly after that, he gave himself a raise.  I didn't take mum in to get money; she had already been living with us long before that program was put in place, but it did help.

I've had them with counts below 30.

I haven't found anything I ingest makes any difference in my platelet counts.  
Wishing you well in dealing with the recent diagnosis.  

i havent found anything to raise my count either (23) good luck 

tonymarinello
Sorry to hear about the diagnosis of AML.
There is no definitive proof of food raising platelet counts.
Have your medics considered TPORAs to try raising your platelet count, and iron infusion for your anaemia? 

I wanted to provide a quick update since my posting 6 months ago. (I am not sure if I am doing this correctly.) As a caution, I do not have ITP. I have CTP, a cycling platelet disorder of unknown origin. However, some of my problem overlaps with ITP. Since I last posted, my cycling platelet problem continues unchanged. I am supported by platelet transfusions when my count is under 10 and falling. During the past six months, I met with a doctor from one of the teaching hospitals close to me. Without getting into a lot of detail (other than my situation is not cancerous), he made a suggestion that I try a low dose of methotrexate which I have started today. (I did come across one article: "Methotrexate as a Promising Treatment for Immune Thrombocytopenia", that deals with a few refractory ITP patients that were treated with methotrexate with good results. Methotrexate doesn't seem to come up in discussion on the ITP website so I assume that it is not used often?). Platelet boosting drugs are still off of the table for me due to my high platelet peaks during my 7 week cycle. Also, I was taking Amicar as a backup when I was low in platelets. I lost insurance coverage for the drug. He suggested that I try TXA and the TXA has worked great (for me). That is pretty much where I am currently.

I appreciate having the opportunity to post to this board. I realize that my situation is different than ITP. However, there are people that visit this board in search of information that might apply to them. In my case, I was able to link up with another individual with CTP. An exchange of information between our doctors helped establish my initial care program. I am thankful. 

I was diagnosed in 2012, was on watch for several years. In 2016 platelets at 4. Steroids ineffective. Started Nplate and simultaneously treated an H Pylori infection so not sure which treatment worked but I went into remission.  Consulted with Dr David Kuter who suggested taper Nplate after 6 months. Have been in remission ever since with platelets in 200 range. Are NSAIDS contraindicated for life? I’m having surgery and protocol is to take NSAIDS for pain unless contraindicated.

I asked my haematologist this just today. He considered it fine for me to take them, and I'm currently at 120

Thank you so much for answering my question. I also finally heard from my Dr. I had asked because I am having major surgery and surgeon wants me to takes NSAIDS postop for pain. I was told OK to take them for short term such as post surgery or occasional such as for headache. Shout out toPDSA for making this forum available!

In 2017 I had both of my hips resurfaced which differs from THR in that they femoral head is capped with the ball and stem rather than removing the femoral head. Acetabular prosthesis is essentially the same as THR. About a year until full recovery but I was doing pretty much all of my normal activities at 6 months.  I was diagnosed with ITP in 2011, took steroids for about 3 months and went into remission until Nov of 2022 when I relapsed.  I had normal CBCs for 5 years post surgeries. All the information I've found says there's no link between metal or polyethylene joints and ITP.  

A count above 800 is not what I want.!!!!!!
Avatrombopag on hold. Weekly bloods continue 


If anyone knows how to move a topic  into the correct category please let me know. This should be in Treatments General not Newly Diagnosed 

Seriously mrsb your count is above 800??
You are a mystery woman for sure - what is going on, bless your heart!!!!!!!!!!!!!!

[I'd click on Report to moderator below, it is above the Quick Reply  Reply  Quote buttons - as them to move this to the Treatments General section]

Thanks Melanie I have done as you suggested. 
Consultant thinks I must  be extremely sensitive to Avatrombopag. Now taking baby Aspirin until count lowers  

OMG, mrsb!  That's a high number!   It's sad that your doctors are having such a hard time finding something to keep you in your safe zone. I bet they are getting just as frustrated as you.
Fingers crossed that number comes down, but not too low.

Hello all - Wondering if anyone has experience with Doptelet they would like to share.  
I've taken Promacta in the past -  worked a bit for me keeping me 30-60 range for 2 1/2 yrs until it didn't - tried Tavalisse but unfortunately did not work.  Heme wants me to consider Rituximab or Splenectomy now - have avoided both of those options - then noticed small 44 pt study abstract that stated Doptelet works in many even after Promacta failure. 

What is the range of your count now?
Why does your hematologist feel a splenectomy will work?   

After 21 years of remission, my ITP is back.  The treatment that worked really well for me was Prosorba column.  However it went off the market in 2007.  So far nothing has worked to get my counts up.  Not prednison, IVIG, Promacta or Doptelet.  Just had my second treatment of Rituximab and will be starting  NPLATE on Friday.  Anyone out there who also had success with Prosorba and have suggestions on something that has worked well for them since Prosorba is not around anymore.  Thanks

Karen

Anyone know of any research being done on how the gut microbiome relates to ITP in adults.  I did see some research being done with Kids with ITP and the gut microbiome at CHOP but was wondering if anyone knew of research being done with adults.  Thanks,

Karen

Hi MelA  -Count is 23 as of this week. (which is symptom free for me and close enough t o 30 that it keeps me calm)  went low as 9 and 15 in Feb and March while on Tavalisse.  I have made it clear to Heme that I'd like to leave splenectomy as last option but was open to rituximab. Honestly don't know his rationale yet. He is top in field like many, but I usually wait 45 min to get to talk talk to him for 20 min. (not sure if that is same everywhere but common with specialist visits in the states) I have fear of increased risk of infection for both those options that, for me, weigh against remission chances. So I guess the answer is I don't know why he feels splenectomy will work.  He sched initial consultation and I have visit with surgeon later this week just to get info on procedure.

I was kinda hoping to recycle a Promacta like drug before trying Ritux or splenectomy or maybe do wait and watch for awhile.  I've been more than 7 years under 50 now so my comfort level with wait and see seems higher than Heme doc.

   

Eltrombopag eventually failed me but Avatrombopag in conjunction with 100mg Fostamatinib twice a day works for me so well I'm on  a break from it to bring my count back down from above 800. I was only taking it once every 3 days this time.