Diagnosed with ITP but confused?

Hey everyone,

My name is Gretchen, I am 24, and I got diagnosed with ITP recently even though my platelets are not REALLY low...Usually around 115-130 range. But my MPV level was 12.4 recently. What does that mean?

I guess my anxiety about ITP comes from the KNOWING my platelets can go lower than they have. The diagnosis was based on my past platelet counts over the past few years. I did have one doctor tell me years ago that my platelet count was 200 and I should see a hematologist. I thought she meant 200,000 so I did nothing. But I've never seen that paperwork so I don't know. I've had my platelet count change in one day, is this normal? In the afternoon it was 130 and then in the evening (I had to go to the ER for severe abdominal pain, my platelets were at 160??)

Hello Gretchen, the MPV is the mean platelet volume which shows the size of your platelets. 12.4 is high so it shows that your platelets are big.

Your count is good, hope it stays that way for you.

Having trouble replying. How does Q Reply work?

Anyways, so my numbers on Fri were 160 and the MPV was 12.4. Both are good right though? A High MPV isn't bad right?

So...what do I do with my dx? When my doc said it was 117 he said we only worry if it goes below 100. Well, how would we know that though? I don't go there regularly enough to monitoring it...

Yes platelet counts can very! I had my blood drawn, and they tested two vials at the same time because apparently there can be a difference. I can't remember exactly why this is ... something about the platelets accumulating together which can make it look like there's more platelets in one sample then is really accurate? One of my vials said 40k while the other said 50k. So yup, it's normal to have different readings!

I know what you mean about the anxiety. Ever since I learned about this, I worry all the time about my platelets lowering. It's almost an obsession. I've read this is pretty common (for us to obsess over every blood test and every bruise/bleed) I know I check my body every day for bruises- what for? Just to get myself worked up? I think the stress that comes with this makes things worst. We just have to stop and breathe!


I cross my fingers for you and hope that everything works out!

Hi Gretchen! I'm gretchen too! A bit older than you though!
I'm really new to this ITP too. Your counts are good. I'm not sure about the size though. Looking forward to hearing more from you.

Does it usually start off with mildly low numbers and then plummet or could my pt count stay around the same?

Hi Gretchen! Nice to meet you! What's your story?

Gretchen:

Hello. Your platelet count is great! Let me give you a little bit of information. A normal count is usually considered to be 140,000 to 450,000. If someone is a little below that, it's not a worry. Most hematologists consider a count over 30,000 to be safe, meaning that most daily activities can be carried on as usual and no treatment is needed. A lot of people even go lower than that before they treat; 15,000 to 30,000. As you can see, you are doing fine.

When talking about platelet counts, a count of 200,000 IS 200 or 200k. The lowest is 1,000 or 1 or 1k. The only thing lower than that is zero.

Platelet counts jump around a lot, so you will see varying results. Platelets are constantly being made and destroyed, so the numbers can change. Also, the numbers can change depending on where you get the count done. The automated analyzers can be calibrated slightly different than another which can make a difference.

Don't worry about the MPV. None of us do.

Last, most people with ITP get symptoms when counts are low, and that can be a clue. Common symptoms are deep purple or black bruises without injury, little red dots called petechiae, bloody noses, blood blisters, etc.

Hey there,

Yeah I am happy that the results were 160 but I also wonder if your platelets elevate with stress? They were at 117 and then I had that crazy abdominal pain and suddenly it goes up again. Could they be related? Just wondering!

Im actually asking that because I have been so incredibly tired lately. I slept from 8am on Saturday to 8am today and that was after a few hours of sleep on Friday night in the ER and I'm already tired and was by 10am today. I've been barely making it through the day and I wonder if my pt count is going up and down somehow. I got to my doctors and laid down on the table and closed my eyes and the doctor was worried about how I'd get home because of how pale and tired I was. She said low pts dont cause fatigue so that's not it. (but it was at 130 then anyways)

I get worried about leukemia too but my WBC is staying lower these days. For awhile my WBCs were around 10 and my platelets were low but now my WBC is usually around an 8 which is better. I have this leukemia-phobia. My grandma and her mother died at 52 (both at the same age) of leukemia before I was born and when I was told that it stuck in my head.

As you can see by the numerous dats below I've not been feeling well lately...

WBC Normal: 3.8-10.4/RBC Normal: 3.80-5.10/PT Normal: 150-450

04/30/10 WBC 9.2 RBC 4.71 PT 161 MPV 12.4 (ER Readings)
04/30/10 WBC 8.4 RBC 4.54 PT 131
03/31/10 WBC 7.6 RBC 4.54 PT 117
12/07/09 WBC 9.4 RBC 4.79 PT 170
11/20/09 WBC 8.3 RBC 4.68 PT 154
11/17/09 WBC 11.5 RBC 4.53 PT 160
11/02/09 WBC 8.9 RBC 4.68 PT 133
09/18/09 WBC 10.0 RBC 4.53 PT 147
06/17/09 WBC 8.4 RBC 4.75 PT 136
07/26/08 WBC 9.5 RBC 4.29 PT 147
05/06/08 WBC 14.1 RBC 4.74 PT 133
10/25/07 WBC 11.3 RBC 4.74 PT 170
10/12/07 WBC 9.0 RBC 4.46 PT 155

Hey girl!

Like you, I am 24...I've had ITP for a little over a year. Your numbers look GREAT...I'm kind of confused why you are so worried! Your platelets are not even that low. Many people wouldn't even treat with platelets that high! Your WBC and RBC counts look good too, so why the worry? I know exactly how you feel however, I went through that whole fear myself a year ago! Take a deep breath! I am still wondering why your drs. are thinking of treating...As for the fatigue, going in the ER would be exhausting enough! Take a deep breath! It will all work out! If you have ANY questions, don't hesitate to ask! :0)

Natalie

Hey Natalie, the dr isn't going to treat it...he just says that its consistant with ITP even though its not too low. Not really sure about all of this honestly. I just know that I've been so sick for a few years now...I had three surgeries and a few skin biopsies since 07'.

Ovarian cystectomy May 07
Appendectomy and ovarian cystectomy Aug 08'
Gallbladder out Mar 09'

I've had on and off mild fevers for years now. I've been dxed with dysautonomia (POTS), Asperger's Syndrome, ITP, and IBS.

Doctor's are amazed at how sick I keep getting. Paralysis attacks to leg pain to fevers and vomiting for no reason... In 08 I had so many ER visits they were started getting suspicious that I was making it up but I'd show up with severe pain and 103 fever and they couldn't find the cause. When they finally did a HIDA Scan of my GB and it came back severely abnormal they thought they'd fixed me but I wound up in the ER AGAIN on Friday after over a year of no ER visits with excruiating upper abdominal pain and upper back pain that they could not identify. Pancreatic levels were low, K levels too low but that's about it...so..I'm just exhausted of all of this! I want to feel like 24! I feel like I'm 105 years old health wise...

I've had a colonoscopy, endoscopy, cystoscopy, Brain MRI, Abdominal MRI, 10 Abdominal CT scans, and soooo many blood tests.

So many times I want to say I GIVE UP I"M NOT GOING TO A DR ANYMORE and then I get so sick I had no choice but to go to the doctor. 15 doctors have examined me so far and so far I'm getting nowhere or so it seems. The dysautonomia is really screwing things up. Sorry to vent but it's been a crazy ride and I thought it was over...

Have you ever had any Lupus tests? Not saying you have it, just asking.

I'm not sure. What tests do they run for that? I've had a LOT of tests lol

I've been tested for lots of stuff and I have access to some of that online so here is what I know from online:

EBV - past but not present exposure
ParvoB19 - past but not present exp
CMV Antibodies - past but not present exp
Toxoplasma- Neg
Lymes- Neg
H pylori- Neg
Occult Blood - Neg
ANTI-NUCLEAR AB - Neg
Monospot- Neg
Genprobe- Neg

IGG1 431 (382-929 normal)
IGG2 400 (241-700 normal)
IGG3 80 (22-178 normal)
IGG4 112 H (4-86 normal)
IGG 951 (694-1618 normal)

**CRP HS 6.6 (0-3 normal)
CRP 3 (0-9 normal)
TSH 1.030 (0.270-4.200 normal)
TT3 175.1 (80-200 normal)
FT4 1.38 (0.93-1.70 normal)
**Cort AM: 25 (4-22 normal)
Vit D 31 (30-99 normal, previous test 3/31 result was 22)
**Pancreatic Amylase 22 (25-115 normal, 4/10)
**Pancreatic Lipase 62 (73-393 normal, this result 4/10 previous test 11/08 was 188)

CD3% 65
ABS CD3% 1522 (578-1850 normal)
CD4% 39
ABS CD4% 922 (350-1100 normal)
CD8% 22
ABS CD8% 522 (193-685 normal)
CD4/CD8 Ratio: 1.8 (.84-3.0 normal)

ESR/SED Rate: 2 (0-15 normal)

ANA, dsDNA, C3 and C4, SED rate, Anti-Sm, Anti-Ro, and a few others.

Yep had the CD3 and CD4 and Sed rate and I think the ANA is the same as the anti-nuc antibody right?

Yes, it's the same.

Is it worth it to get the other tests if these have come back the way they have?

Wow Gretchen, that's a lot of crazy stuff you've gone/are going through! I wish I could help somehow, but I have no clue! The fatigue would be enough to make me go crazy. I have some, but I still manage to get through the day. I just constantly feel like a bump on a log! I was discovered I had ITP in February when I visited my gyn for female bleeding problems. I had a BMA and my marrow is fine, so alls I have, for now is ITP. And that's the way I want it to stay! I don't know about all those tests you've had but have they checked for Mono? Can't wait till they get it figured out for you!

Probably not if those tests have been done recently.

Well see the issue is that my primary is also a hematologist apparently. I've never met him. The NP talks to him for me. I kind of want a doctor who will actually talk to me but he's "too busy" I guess.

Wow Gretchen Thats a lot to deal With. I'll be praying for you. On a lighter note 24 seems to be a popular number on this board! I'm 24 too, been diagnosed with ITP for 16 weeks now. If it's any encouragement at all take heart in the fact your platelet numbers are good! mine hover between 0-3k and steroids last around 10 days in my system.

Hi! Wow I guess it is a lucky number. I found this site so randomly too lol...

But what I dont get is how I got diagnosed with ITP if my pt ct is usually 115-160 I know its "low" but...he said it doesn't matter how mediocre-low it is, its still low and its still ITP basically..so..eh..

Well, technically it is ITP, but it could also just be your norm. The reference range is only that - numbers that are the "norm". Falling below the norm is not necessarily a horrible thing as long you don't continue a drop. Many people live with counts in the 60's and 70's and have been at those levels for years. They just monitor a few times a year and live normally. Hopefully, that will be the case for you. If not, you treat and deal with it.

I'm glad you found us.

Random thought but my A1C was 5.7 a couple years ago and I have incontinence, my last urine ph was 5.5, frequent urination, weight gain... They have found protein in my urine before but didnt think much of it but they do a lot of urinalysis on me and always find blood in my urine but no infection Also abnormal readings of ULEG and UBLG and I dont know what those is.

Doctors say thatMy mother has "reactive hypoglycemia" but says now drs have found that everyone has that?

Could this/is this an ITP thing?

No - not TP related. Blood in urine, maybe, but mostly that happens with low counts.

Hi-

You sound much like me- lots of pain in upper right side and upper back. Lots of blood tests, etc.....

I was told that a past EBV infection can REALLY mess things up. That little bugger may be the cause of much of it. It can be linked to platelet issue and cancer and all sorts of pains. It's rather common but some of us have more problems.

Are you RH negative by any chance?

Hmm...yeah i didn't even think about that. they just said I had a past EBV virus and I dont anymore. They were SURE it was mono for the millionth time this time but the monospot is always negative because almost every two weeks to once a month I get very tired and achy and have flu like symptoms with vomiting, mild fever, abdominal pain, and sleep and sleep and sleep and it doesnt seem to be anywhere near my period either. I have light periods but thats only because I've been taking so much ibuprofen and so instead of REALLY heavy bleeding for 3-4 days I have heavy bleeding for 1 day and then about 5-7 days of lighter bleeding.

The doctors seem to think I'm making this up but if they could only be in my shoes for once theyd understand. the other weekend when I suddenly had excruiating upper abdominal pain and had to rush to the hospital (my fiance didn't know what else to do since I had pain in my left arm too) only to find nothing visibly wrong. This is exactly what happened with my gallbladder a couple years back. I'd get violently ill with a fever of 101 and upper abdominal pain and the doctor on call would say go to the ER. I stupidly did but didn't know what else to do since nothing would stop the pain. Well then they did a HIDA scan of my gallbladder after several normal CT scans and a normal ultrasound they found my gallbladder to be severely dysfunctional and the surgeon said when he took it out it looked like it had been inflamed over and over and over again but all of those CT scans had shown no inflammation. Weird huh? I had to have emergency surgery to have it out. After that things seemed to be improving. No more crazy pain until two weeks ago and my gb came out over a year ago and this time the pain was on the LEFT side. Now I know that ITP and the spleen are related and that the spleen is on the left side and that some of the pancreas is on that side but so is the left kidney.

I feel like a Dr. House patient with no Dr. House. I feel like I should have earned a medical degree by now. Three surgeries and 12 procedures in 2 years...UGH...

What's your story? How were you diagnosed with ITP? When did your upper right sided pain start?

That's a really good way of putting it, being a Dr. House patient with no Dr. House. Dr. House remains fictional but his patients do not.
Erica