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New to ITP 5 months 2 weeks ago #70074

  • HLTaylor82
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This has been kind of a rollercoaster for me. In early September I had a misscariage at 9 weeks. I went In to see my Dr 2 weeks later. She discovered my platelets were at 55,000. Went for a blood draw a few days later and they were up to 70,000. I had my first period post misscariage and bam they are down to 38,000. Primary care sent me to the ER. They didn't really do anything besides bruise me and do another CBC to confirm low platelets. ITP has been thrown around by all Drs. I had an appointment with the hematologist 2 weeks ago she put me on a 4 day dose of dexamethasone. Platelets went up to 170,000. She says to me she's pretty sure I have ITP. She said all of my blood work looks good to her besides the plateletes. She did a blood smear cbc and said it's all pretty unremarkable. She mentioned that it's possible that ITP came on from a stress reaction to the misscariage. I went back this last Tuesday to see if the plateletes stayed up they did not. They dipped to 38,000. They put me on another 4 day dose of dexamethasone due to period starting again. I'm scheduled to get a bone marrow biopsy on Tues. I'm really scared and freaked out. If they think it's ITP why do the biopsy? My concern is trying to safely have a baby with ITP. Ive spent the past few weeks just in tears because I wasn't expecting any of this after a misscariage. I was hoping the steroids would just fix everything and was so hopeful then the platelets dropped again. I've seen there are options for medicine but they aren't safe for pregnancy. I've seen I can get my spleen removed but there isnt a 100 percent chance that will work plus it's a major surgery. Just wanted to share my story and try to get some hope

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New to ITP 5 months 2 weeks ago #70080

  • sleev-les
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I'm new as well. 1 month on the 17th. I've read a ton of info on this site and currently on Prednisone. Splenectomy is the last thing to try. There are a ton of different treatments out there and just have to find what works. For me, I've had to get it in my head that patience its key while you go through the motions. I've got myself on a path and my life is going to be fine. You'll get through it as well. I had a bone marrow biopsy as well. They want to make sure nothing is wrong there. It was actually painless for me, but all depends on how your doctor performs it. I wouldn't freak out as normal numbers with ITP aren't necessarily going to be a thing. Safe numbers are the target. My hema wants me to stay above 50k, but even when I crashed to 16k I just bruised. Still clotted. Work with your doc as they will be the ones getting you through this, but don't let it eat at you. I started down that path, but quickly pulled myself out of it. Good luck and I'm sure you'll find the right treatment. There is a ton of knowledge on these forums and this site in general.
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New to ITP 5 months 2 weeks ago #70081

  • HLTaylor82
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Thank you so much! It's all been a struggle since September. First the misscariage and then this. It's been hard. It's good to know it's not as scary as my mind tells me it is. I'm really freaked out for the biopsy tomorrow but hoping it all goes well. I'm concerned if I'll be able to have kids with this condition now.
Glad to hear the spleen removal is kind of a last case thing as I really don't want to do that first.
Thank you so much for the reassurance

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New to ITP 5 months 2 weeks ago #70084

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
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HL
ITP can be either a platelet production or a platelet destruction or both.

A bone marrow biopsy should indicate if it is a production problem and is nothing to worry over. Quite frankly I found it preferable to having a tooth filled.

Here in the UK we can have a test that shows if the platelets are being destroyed in the spleen. Mine were but I refuse point blank to have a perfectly healthy organ that is doing its job properly removed. Don't even think about splenectomy at this stage. It is not without risks.
Latest guidelines ashpublications.org/bloodadvances/article/3/22/3780/428877/Updated-international-consensus-report-on-the (weird looking link but it works) state "If possible, splenectomy should be deferred for ≥1 year to allow for remission"
There is no guarantee a splenectomy will work anyway because the Reticuloendothelial System takes over the job of the spleen ergo platelet destruction may well continue. A good description here www.creative-diagnostics.com/the-reticuloendothelial-system.htm

Sleev-les has given you sound advice. It takes a while to get your head around it. I was way out of my comfort zone when I was diagnosed. As a renal specialist nurse my knowledge of haematology was limited. This site was a godsend for putting my mind at ease.

There is no reason why you cannot have a baby just because you have `ITP. I'm well past childbearing age but I have met ladies at the ITP clinic who have had children without any problems. Haematologist and obstetrician need to work together to monitor you during a pregnancy.
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New to ITP 5 months 2 weeks ago #70085

  • HLTaylor82
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Thank you so much! I've been so freaked out since she said bone marrow biopsy! Knowledge definitely is power. Hoping we get some good results and this is easy to start getting the numbers a bit higher. Body responds to steroids but once I'm done with them they dip again.
This page has already been so very helpful

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New to ITP 5 months 2 weeks ago #70086

  • gozorakgogo
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mrsb04 has been a fountain of comfort to me...once I accepted what she was saying. I too was freaked out by the hospitalizations, by the Fall Risk band they had on my arm and not letting me out of bed, by the reactions of some of the DR's in the hospital who made it seem that I was at serious risk of brain bleeding, and the worst of all my own uncertainty about it all. With time I realized that really low counts(sub 10) are not fun for me because more than anything I have zero energy because of the anemia. I am out of commission when Im at that point. I havent been at that point however since early August. Initially I thought that any count under 100 was bad news and serious. I quickly learned here and from my Hemo(once I had one) that is not true. Not at all. Even down as low as 30 its fine so long as I deal with the fatigue. I have finally reached the point that I honestly dont care what my level is when I go in every week for a check and my Nplate injection. One week its at 386 the next week its at 168 and then back up over 200. I have fortunately responded well to Rituximab and Nplate. That was not the case with Prednisone and I am thankfully off of that.

Hang in there. It will get better. I wouldnt worry about the bone marrow biopsy result. They opted not to perform on me because very early on when the platelet transfusions and IVIG failed to do anything boosting my levels no more than a day or two meaning its primarily a problem of platelet destruction instead of production. The Nplate does stimulate the production of platelets so there may be an issue there as well but not because of anything a bone marrow biopsy would pick up on or be needed for.

I cant speak to your concerns regarding pregnancy and I am so sorry for you misscariage
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New to ITP 5 months 2 weeks ago #70087

  • HLTaylor82
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Thank you for all of the information!
I did well with the steroids but once I stopped taking them my numbers dropped again. Th Dr thinks the misscariage caused the itp but we will see.
I'm worried about the biopsy but all of the comments in here are making me feel so much better about it all.
I am learning that this is a very frustrating disease where you see your numbers go up and down constantly. I'm just ready for a treatment plan.

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New to ITP 5 months 2 weeks ago #70088

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
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Gozo
Thank you for those kind words. I have always firmly believed in educating patients and encouraging them to increase their awareness so they can take an active role in their treatment.

HL
ITP can indeed be frustrating and counts can swing about. The fact that you respond to steroids is good. Although that are horrid and no one wants to be on them longterm they are useful for a short course to get counts up if they go far too low. This is know as rescue therapy. My count always drops if I have a virus but comes back up again with a quick rescue.

Treatment is rarely instigated if count is above 30 unless the patient is symptomatic. The aim of treating ITP is not to normalise platelet count but to get it to a safe level. Doctors appear to be more bothered about counts where as patients are more bothered about symptoms. My target count is set at 50. Purely for the fact that when it plummets it is usually to singe figures then I have nosebleeds, become anaemic and have to take iron supplementation. If I could maintain a count above 30 without any meds I would be delighted.

Also be aware that medications can take time to work, don't get disheartened if you do not see an immediate effect.

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New to ITP 5 months 2 weeks ago #70091

  • gozorakgogo
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Out of curiosity I wonder what kind of platelet level swings within the "healthy" range a person without ITP or low platelet levels would experience as normal. I am assuming that even in a "healthy" person platelet levels swing up and down within the "healthy" range. and perhaps even outside that range from time to time.. Since healthy folks dont have their platelet levels constantly checked they would have no idea of what the normal level swing might be. They would have no need to know anyways.

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New to ITP 5 months 2 weeks ago #70092

  • HLTaylor82
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I'm also very curious what the swing of platelets are. Mine were 98 today after a 4 day dose of dexamethasone. But for someone who only gets blood tests once a year I'm curious how much it changes

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New to ITP 5 months 2 weeks ago #70094

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
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My suggestion is:- if a normal platelet count is 140 – 400 can we assume that counts could swing between these 2 levels?

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New to ITP 5 months 2 weeks ago #70099

  • midwest6708
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mrsb04 wrote: My suggestion is:- if a normal platelet count is 140 – 400 can we assume that counts could swing between these 2 levels?

Mine never did before ITP. My count was taken once a year and was generally in the 230s.

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New to ITP 5 months 2 weeks ago #70100

  • MelA
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My count was taken once a year and was generally in the 230s.

No ones count stays the same all the time, ITP or not - so we don't know what our count is in-between the times we take it, but it isn't going to stay the exact same count.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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New to ITP 5 months 2 weeks ago #70101

  • midwest6708
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Of course I know it's not static. Illness, drug therapies, diet... Lots of things can effect temporary changes. I'm just saying that my personal "normal" was somewhere around 250, no more than 30k above or below that for at least 10 years. I believe that everyone has one spot within a lab range that's their normal, no matter what the test is. The range is just the high and low between which 95% of the population falls... Not that anyone can place anywhere within those limits and have that be considered normal for them, you know?
Eventually, in 2006, count came in at 156. Just a one-off in anybody else's world, right?
But in 2007 it was at 79k. Doctor didn't mention the low flag, and I didn't notice it either.
Finally, in 2008, it came back at 51 and 30 on the recheck. That's when I was diagnosed.

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