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TOPIC: Need Advice Please :(

Need Advice Please :( 4 months 3 weeks ago #66127

  • Carcamoc10
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Hi all! So I have a question about low platelet levels and hospitalizations. I was diagnosed in December and since then, I’ve been sent to the ER by my hematologist once a month. He usually does it if I’m under 20K, but we have been unable to stabilize my levels at all and I bottom out very frequently. I don’t even have a baseline number yet because of this. My question is at what point can I refuse to go to the hospital for treatment? I usually have very bad experiences at hospitals and it causes me a huge amount of stress. For reference, even when I’m under 10K I don’t have any serious bruising or bleeding...usually I’ll have a few petechiae and the occasional blood blister in my mouth in addition to some fatigue. I’ve seen here it’s more about treating when there’s serious symptoms as opposed to really low levels, but my hemo doesn’t seem to have that same attitude towards it. And it’s difficult because it’s not even feasible for most people...it is a ton of money each time and how many more times am I gonna get sent?! Sorry for the rambling but I had labs drawn today and I already know I’m low again and I’m gonna get the phone call in the morning to head to the hospital, but I really don’t want to do that! Any advice would be greatly appreciated, has anyone had to have this convo with their hematologist? I just want to feel like I’m in some control of my life again :(

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Need Advice Please :( 4 months 3 weeks ago #66130

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My hematologist in the San Francisco area does not worry about my counts and has never sent me to the hospital even when my platelets were at 1. He is my third hematologist and the most easy going. When he was on vacation his nurses tried to send me to the hospital for a platelet transfusion- I refused saying that I didn't need it, My counts were 7 and I was just fine, and platelet transfusions don't work for ITP. Once before Xmas, my family doctor tried to make me go to the hospital with platelets of 6 and I refused. She was very upset saying it was a medical emergency, I had to be strong- its hard standing up to an authoritarian domineering doctor! But often doctors try to "over-treat" ITP with too many strong drugs, transfusions and hospitalizations. You have to get to know your body, some people do have bleeding problems, but I never have. I can be very low without symptoms and over the years I have come to trust that I am okay. The treatments can be more dangerous than the ITP, so I take that into consideration.

I am older than you are so that makes it easier, I know very well that I don't have to do anything I don't want to do. PLUS I respond to prednisone so I have it on hand and can take some to boost my counts up. I would probably look for another hematologist. Or try to work out some kind of agreement with your doctor, such as, you won't go to the hospital but you will ... come to his office for treatment, or whatever you are willing to do. Good luck! Its very common to not agree with the doctor when it comes to ITP.

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Need Advice Please :( 4 months 3 weeks ago #66133

  • mrsb04
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I completely agree with poseymint's comments.
Treat the symptoms not the count. It's your body and you know it better than anyone else. If you are asymptomatic what is the point of going into hospital.
I spent 1 night in hospital 5 years ago on the day I was diagnosed. I've never been in again.
Once a junior doctor tried to persuade me to go in with a count of 6. I declined as asymptomatic, and like poseymint I keep 5mg pred tablets for rescue remedy, so I took 10mg of Pred for the next 2 days, followed by 5mg for 2 days and went back to my (then) normal dose of 3mg. Platelet count was fine on retest.
I am lucky to have a laid back haemo who encourages self management of symptoms. When I was going to Australia for a holiday I asked her what was the lowest count she would let me fly with and she said anything above zero.

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Need Advice Please :( 4 months 3 weeks ago #66134

  • Carcamoc10
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@ mrsb04: Is you taking the prednisone when you’re low something your hemo told you to do? I’m just curious as mine hasn’t mentioned this as an option for rescue! But that sounds amazing the way your doctor trusts you to know your body!

@ poseymint: Yeah, my last appointment I told my hemo I was really not trying to head to the ER anytime soon even if I was low, so he basically said that was fine and we could do IVIG in office for anything under 50 but over 10...he did say anything under 10 he would be more comfortable treating it urgently at the hospital. The way he explained it is that’s what he would tell his favorite cousin to do. Which, I understand...but at the same time, I also am someone who’s very aware of her body and symptoms. So if it ever comes to that, honestly I’m thinking about just refusing to go to the hospital and he’ll have to figure something else out. Of course I’m gonna keep mentioning that I don’t want to deal with hospitals anymore and if he doesn’t budge, then I’ll know it’s time to find a new doctor!

Thank you so much for your advice, I really appreciate you taking time to share your experiences! For today, I checked my patient portal for my labs and am at 15, it was written in notes that orders for an IVIG drip were sent electronically but I haven’t received a phone call yet! But I’m fine with that as it’s usually done at my doctor’s office. Anyways, thanks, hope y’all are doing ok :)
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Need Advice Please :( 4 months 3 weeks ago #66138

  • mrsb04
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carcamoc10
Yes Haemo told me to do it if I think count is low. So many doctors want to treat counts not symptoms. I consider myself very lucky with this haemo.

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Need Advice Please :( 4 months 3 weeks ago #66139

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My hematologists have also been more relaxed--even when my platelets were 3K, no one suggested I go to the hospital. Then I was doing prednisone without problems, so I just upped my dose, and my body responded. What treatment plan do you have? I'd talk with the doctor and tell him what you've told us. It would save you and the medical folks time and money if you both agreed that you would be treated outside the hospital. The ER docs know lots less about ITP than your hematologist. (I think ER docs know less about ITP than I do!)

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Need Advice Please :( 4 months 3 weeks ago #66140

  • mrsb04
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You are right there Karen.
I think most doctors other than haemos know less about ITP than the those of us with it. My previous GP and my new new GP admitted they hadn't a clue about it.

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Need Advice Please :( 4 months 3 weeks ago #66143

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@ mrsb04: So true, I hope to get to that point with my hemo!

@ karenr: My treatment plan is Promacta 75mg daily and wait to see if the Rituxan I did a few weeks ago kicks in and at least stabilizes my levels! I was informed there’s a shortage of IVIG right now and that’s why they’ve been sending me to the hospital every time I bottom out, since they’re able to get it more successfully than doctors offices! But even then, I just can’t keep doing this...it’s a strain on every level and does not last even an entire month as I’ve seen. And as you’ve mentioned, the doctors at the hospital are very clueless about ITP and I don’t trust them almost at all.

The doctor’s office actually called my husband up today to tell him I need to head into the ER and he told them I’m not going in because I don’t have any serious symptoms. They scrambled to get another plan together which I’m not even sure how it’s going to play out just yet. But I figure now rather than later is good to find an alternative to the hospital!

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Need Advice Please :( 4 months 3 weeks ago #66144

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I would consider Dexamethasone instead of prednisone since you don't need to taper it off.
ITP is an illness not very well understood and the symptoms not very well investigated. Many doctors to be on the safe side will over dose you, will send you to hospital, to forbid you to do sport, to flight etc... without scientific evidence just because a suspicious guess and of course....not to be blamed if something happens.

Sorry you got ITP diagnosed in December. I was last September.

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Need Advice Please :( 4 months 3 weeks ago #66146

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@ grouchomarx: How is dexamethasone administered? Is it a pill or intravenous? I don’t know if I’ve ever been given it, but I don’t remember my doctor specifically using that as a rescue! I can ask about it though, because he seems to not like how I responded to prednisone so he doesn’t have me take it anymore. And what has your hemo had you do since September? Were you able to find something that works for you?

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Need Advice Please :( 4 months 3 weeks ago #66152

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Dexamethasone treatment is also a corticoids but of different kind. More powerful thou. Usually the patient takes just 4 pills of 40 mg in 4 consecutive days (colloquially called dex pulse) and you forget about it since it doesnt need tapper .
For me prednisone was a nightmare even at lower dose. I put on weight, I was agitated, didn't sleep well, depressed and according to my doctor some people have even psychotic events. For Dexamethasone was less invasive.

I suggest don't get high Hopes to return to over 100.000 count if DeX pulse put you over 30.000 you are already a winner for now since this is usually the limit between being medicated or not. An medication is the worst part if itp. Over 30.000 you might also be able to do almost everything you are doing.
I have posted in another thread my DeX pulse results so far.

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Need Advice Please :( 4 months 3 weeks ago #66153

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@ grouchomarx: 30K sounds like a dream right now haha...but yes I will bring it up to my doctor and see why we haven’t tried that yet! Thank you for your response, hope you’re doing alright! :)

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Need Advice Please :( 4 months 3 weeks ago #66154

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I am glad it helps. I was 9000 last September and my counts are barely over 30.000 now but without bleeding or petechiae. :) Good luck and dont hesitate to ask anything.
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Need Advice Please :( 4 months 3 weeks ago #66155

  • Lman
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If you don't use any treatments for 6 months , you're in remission ! for me , counts are not important . symptoms are ...
I wish I was as lucky as you are :( if you are still looking to get treated , maybe we could swap our baseline platelet count ? :P you get treated and I'll enjoy the +20k .
And I shall ask a "naive" question . do you believe anything specific you have done has helped you climb from 9k to 30k ?

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Need Advice Please :( 4 months 3 weeks ago #66157

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Lman. The DeX pulse did its job for at least 3 months I guess but I don't know if it will work much longer.
Regarding the what I did change part of your question. I recognize that i have been ignorant with what I have, made me take aspirines, ibuprofen, diklofenac in heavy doses the months before. Drugs forbidden since it makes platelets count down.
I prefer not to treat without symptoms as you recommend. The fear is the cerebral hemorrhage as you know. The big fear for all of us. I just don't know how realistic is this possibility for a healthy person. According to my doctor if you don't have petechiae nobody is at risk, since before brain hemorrhage you almost always have other signs.
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Need Advice Please :( 4 months 3 weeks ago #66159

  • mrsb04
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I'm not sure NSAIDs make platelet count drop but they certainly affect the clotting mechanisms thus increasing bleeding time.

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Need Advice Please :( 4 months 3 weeks ago #66164

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Good that Dexy brought your counts up for 3 mos! That is a good response. It seems to be a good choice for some people. But...
I tried a low Dex Pulse once- 200mgx4 days and had "psychotic events", I was hearing voices and unable to sleep for 2 nights. I was a total wreck. I recall not wanting to get near the other mothers at my son's school for fear of what I would say- something crazy. If I ever take a Dex pulse again, I would not drive a car. On day 5 after the 4 day pulse, I was very depressed. So 5 days of misery for about a week of higher counts. For me, it was not worth it.

I think it was given to me with Rituxin, they are sometimes given together. Rituxin boosted my counts to around 25K for 6 mos, enough that I was able to taper off of prednisone. Everyone is different with these drugs. I've tried to measure the risk of bleeding vs risk of side effects from treatment. You can't really know, I use intuition a lot of the time! Wouldn't tell my hemo that. I try to avoid permanent loss or damage from treatments, so I still have my spleen. My favorite drug is Nplate. Most people seem to find something that works for them, but it is a bit of trial and error.

I don't have bleeding symptoms even at very low counts of 1 or 2K. I believe there is something else compensating for the lack of platelets- there is some research on micro-particles, fragments of platelets that aren't counted in a CBC but are still doing the job. Good luck finding your answers!

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Need Advice Please :( 4 months 3 weeks ago #66165

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Hi Poseymint, That is really curious about not bleeding at such low counts. I know there are a number of people who are asymptomatic or have few symptoms. I have been wondering why that happens, just haven't looked into it. Do you have any other information about this?

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Need Advice Please :( 4 months 3 weeks ago #66168

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@ b2h: I’m also really curious why I’ve been at 1K and not had as much as a nosebleed or bruise on my body. I show the doctors the few petechiae I get and they seem underwhelmed. I’m just trying to understand when we should treat with urgency!

Coincidentally, I had dealt with ITP for almost a year before I was diagnosed & did not have any bleeding issues. I was very clumsy with a knife but I never had an issue with prolonged bleeding. I did used to get bruising after my workouts, but have been more careful not to use too much weight since then and it is no longer an issue!

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Need Advice Please :( 4 months 3 weeks ago #66169

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Did you ever ask your hematologist why you are asymptomatic? Were you diagnosed by a blood test done for something else? I suppose despite lack of bleeding one should still be careful especially when in the single digits, though I have read about people who simply stay in the single digits, don't treat and live a full life. I really have no idea since I have lots of bleeding when my counts drop. I'm tied to doctors and infusion centers.
ITP varies so much from person to person...

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Need Advice Please :( 4 months 3 weeks ago #66170

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@ b2h: I’ve never asked why I’m asymptomatic because in my research after getting diagnosed, I saw a few articles mention that not all patients at the same low count will have the same symptoms. But I suppose I’d be interested in hearing his thoughts on why. And I was diagnosed after going to my gp about the bruises and she ordered a full blood work up which showed my platelets at 8K. I do worry about internal bleeding, though, which is why I’d still like to find a treatment that works for me! I can’t imagine just not doing anything about it and carrying on with life like everything’s fine! So how low do you get before you start bleeding? That sounds pretty scary :/

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Need Advice Please :( 4 months 3 weeks ago #66171

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I guess it doesn't really matter why. It's more important that you have a good treatment plan and hematologist that you trust. Hopefully, you'll have that soon. It takes time.

For me, it’s more annoying than scary. Around 40 I start to have symptoms, but nothing to be too concerned about. Then, as counts drop the symptoms increase. In the 20's and lower I really don't feel well and don't look great. However, everything is relative. Compared to you, I bleed a lot, but compared to others I hardly bleed.

Internal bleeding is definitely not good and I agree hospital stays are no fun. Fortunately you haven’t had any gastrointestinal or other bleeding, but if you do it’s treatable.

You are still new to the diagnosis, so getting a feel for how it affects you will be important as well as how you react to different treatments and life in general. Once you know more about yourself with the ITP this part of your life will be much easier. And you will then know how much to do or not do, what to refuse, what makes a good doctor etc.

Just remember there is never one right answer or one wrong answer. There are always multiple options and one is not necessarily better than another. It all depends on you and that moment in life. There's good support and advice here.

How’s it going with the Promacta?

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Need Advice Please :( 4 months 3 weeks ago #66172

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@ b2h: That’s something I hadn’t really thought about since it’s mostly been dread that this is going to affect me for the rest of my life (which I know only time will tell). But it’s definitely the bright side then that, as you mention, the longer I have this condition the more I’ll get to know how to manage it in the way that’s best for me.

As for the Promacta, I’m kind of wondering why I’m still on it as my counts are all over the place! I feel like the times my counts have been higher it has been because of IVIG and the occasional platelet transfusions! I don’t really feel like the Promacta is working, especially since I’m on the highest dosage pill (75mg) I also completed 4 rounds of Rituxan almost a month ago and we’re waiting to see if I respond to it. Nothing yet though!

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Need Advice Please :( 4 months 3 weeks ago #66173

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I’m glad to hear I’ve eased your heart a bit.

Sounds like the IVIg is the only thing working, which is great for now since you haven't figured out what works as an ongoing long-term treatment. I don’t know how long you need to wait before you consider Rituximab failed or not. For me, mabs work almost immediately. I’m not sure why you have been given platelet transfusions… perhaps due to the concern and pressing need to treat since this is new for you. I do know many medical professionals often offer platelet transfusions (especially in a hospital setting), but only because they do not understand ITP. They mean well.

You haven’t exhausted your list of treatment options yet so don’t worry.

For how long have you been taking Promacta? For me Promacta did nothing to help. Nplate, however, works very well. You may want to try that next.

Are you going to see your hematologist soon to talk things over?

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Need Advice Please :( 4 months 3 weeks ago #66174

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I’ve heard the Rituxan can take 6-8 weeks to see results, but I’m also aware that it may not work for me, statistically speaking. And I respond well to the IVIG, I’ve had it done alone a few times and it brings my counts up even without prednisone during. I’m not too elated about it though because it is more of a rescue than a solution. I’ve gotten a few platelet transfusions but you’re correct that it’s been ordered by the hospital when I’ve been admitted. And I’ve actually been on the Promacta since the beginning of this year. I started at 25mg and everything was going great, levels were steadily rising and when I hit 300K my hematologist cut the dose in half, which made me crash. Haven’t responded to it the same even when increasing the dosage, hence the current 75mg I’m currently on. My next appointment is on the 18th, which is kind of too long to sit on this question so I may call tomorrow and schedule an appointment for this week! I’m also still waiting to hear back about my game plan for treatment with the crash I’m dealing with right now, so a lot of things are kind of up in the air :(

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Need Advice Please :( 4 months 3 weeks ago #66177

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Unfortunately we are facing an illness that is badly investigated. Yes we don't die of it and our symptoms are bearable. Besides the pharmaceutical industry is earning millions at our cost (at insurance pocket I presume). Therefore, why to investigate and find a cure (they will lose money) or just to investigate how dangerous or not can be our daily activities.
Some basic facts such as is it dangerous or not to fly with a count below 30K are missing. It would suffice to run an analysis (a brain MR before and after some flights) to put en end to this uncertainty. The same applies to "cardio" exercises etc...

One of the reasons why some people might not experience bleeding or bruises can be related to the fact that we probably have more Platelets than the test states. The main reason is due to the calibration of the testers. It seems the tester machines in lab counts platelets up to one maximum size. We all produce a proportion of bigger platelets that cant be measured in lab and some people might have a bigger proportion of "biggers" than others. Once again it would be very useful to have a real count for ITP patients. Carcamoc imagine they tell you, you actually have 15 or 20K more. Wouldnt be great? Well, not even that info we get for sure...

As for me, bruises and petechiae, there are the last of my concerns (I dont intend to win a beauty legs contest), even bleedings, if not too excessive, are not in itself a terrible concern. i dont have them anyways. What is the biggest concern is the brain hemorrhage and this is an area left without investigation. How realistic is to have a brain hemorrhage? (I dont mean by hitting your head only but by going to gym, having sex, taking a hot shower, jogging etc...) Many doctors just to be on the safe side will forbid you many things just not to be blamed after. Well, for me and until a cure is found I demand investigation on the risks or not risk my daily life has.
Indeed, if you are on your 80' and the most risky moment of the day is when you make popcorns to return to your sofa to see the next chapter of walking dead your life will be fine with the current knowledge of ITP. But If you get diagnosed with ITP on your 20' or 30' with a healthy sexual life, where practicing american football was the best moment of your weeks, it is unfair you dont have answers. Because answers over risks or not risks are much much easier than to find a cure at the moment.

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Need Advice Please :( 4 months 2 weeks ago #66182

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Carcamoc, Some people use IVIg on a regular basis as a long-term treatment plan. If you respond well to it, that could be an option.
Sounds like you have a plan. I hope your next appointment goes well and you are able to get some clarity.

GrouchoMarx, So you know, if platelets are low they are counted manually. If you are waiting for your lab results and they are taking longer than usual, this is often the reason why. Also, giant platelets when seen are noted.

I am not saying there are never errors nor variations from lab to lab...

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Need Advice Please :( 4 months 2 weeks ago #66183

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I just remembered a doctor I had years ago told me about sticky platelets causing counts to be incorrect. If platelets are too sticky, the count will be low even though there are enough platelets in the body to stop bleeding. Could be one reason why some don't bleed much.
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Need Advice Please :( 4 months 2 weeks ago #66185

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@ grouchomarx: Yeah, it makes it scary because we’re only beginning to understand this illness! I feel overwhelmed sometimes because how do I know that everything that’s being done isn’t just another money grab? :( I guess I’m just going to have to trust my gut feeling and find another doctor if I no longer feel like I see eye to eye with my hemo.

@ b2h: I would consider IVIG as a treatment only if everything else does not work. I don’t want to be tied to doctors offices and infusion centers, if there’s a chance something else will work better! But only time will tell...I actually made an appointment at another office to see another hemo’s opinion on my treatment plans! Hopefully it will help put me at ease!

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Need Advice Please :( 4 months 2 weeks ago #66187

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b2h wrote:
GrouchoMarx, So you know, if platelets are low they are counted manually. If you are waiting for your lab results and they
are taking longer than usual, this is often the reason why. Also, giant platelets when seen are noted.

Can't tell you the # of times my platelets have been manually counted - usually it was when the CBC was done at an outside
facility that had the tubes of blood sent out to their lab, and the one & only time I allowed a finger stick/slice.

Also don't think just because you have a low count you can't get a stroke - when us ITPers would gather here there was a lady
who had a stroke with a count around 5k.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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