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  #1  
Old Fri Dec 20, 2013, 10:22 PM
edbk35 edbk35 is offline
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Join Date: Dec 2013
Location: Severn, MD
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Referred to a hematologist and I am freaking out...

I went to the doctor for routine blood work in early Oct. I was diagnosed with type 2 diabetes in late March 2012 and have blood work done every 6 months. At this appt. she ordered a CBC in addition to my A1c test along with B12 and vitamin D. My D was low. My platelets came back 109. Everything else was normal. She wanted me on 1000 mg of vitamin D and to recheck in 3 months. She had me come back in mid Nov. to repeat platelets. She also did a liver function test. This time platelets were 96. The liver function was normal. She had me return 4 weeks later which was Dec. 12th. Just got those back and my platelets were 77. I got this lovely news on my 25th wedding anniversary. I now have an appt. with hematologist on Dec. 27th. Vitamin D had only slightly improved so she is putting me on prescription vitamin D.

SO NEEDLESS TO SAY... I feel like a ticking time bomb expecting my platelets to be even lower by my appt. in another week. Any tips? advice? I have read a ton online and it all scares me.
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  #2  
Old Fri Dec 20, 2013, 10:50 PM
Diver down Diver down is offline
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Join Date: Oct 2013
Location: Miami FL
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Too early to be freaking out. My platelets have been as low as 17...docs don't really begin to worry about bleeding issues until closer to 10. At 17, I've had not problems. Low platelets alone can be many things that are treatable and not so bad. So try to relax and not necessarily assume it will be something terrible and they've figured out what's going on. Good luck.
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  #3  
Old Fri Dec 20, 2013, 10:50 PM
Kathy S Kathy S is offline
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Location: Leesburg, Fl
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Thumbs up

Unfortunately you are in the same situation that many if not all have been in here , including being scared. It is a real blow to hear someone tell you there is a major problem when it is not expected. It does not sound as though you have had a Bone Marrow Biopsy yet. Do not start jumping to conclusion until there is some valid reason, you have enough time to think things out once you see the hematologist. As you have seen on here there are many who never expected to hear the results of test they heard. My husband went in for what was thought to be just a sinus infection and when we got hit with a reality check pretty quick. Life does not stop and it will take time to get your mind around it. Six months ago my husband was not able to walk from one room to another without being out of breath and dizzy. He was not able to drive for over two months. Today he is doing very well and we have learned as others here to take one day at a time. It is life changing, but don't let it define you. God Bless and know there is a reason for everything that happens and know that you are not alone here.
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Kathy,wife of 69 year old male with DX June 2013 with MDS= RAEB 2refractory with Extra Blast Very High Risk WBC 1.9-RBC 2.29-HGB 8.1-PLT 32-, as of Aug 2013:. BMB 12/4/13= WBC 5.57/RBC 4.86/HGB 15.5/HCT 42.8/RDW 49.6/PLT 188. 3% blast.BMB 4/11/14 WBC1.6,PLT12,RBC2.6,HGB9.2
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  #4  
Old Sat Dec 21, 2013, 11:28 AM
Whizbang Whizbang is offline
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Location: Central NJ
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edbk35,

My numbers were all VERY low all at once, having just low platelets can indeed be a sign of low vitamin D... my vitamin D was at 30 which was border line for vitamin D, and can be linked to low platelets...

Also if you are taking medication for your type 2 diabetes, it might be likely that it may be affecting your platelet counts...

I would not be freaking out just yet, as a 77 platelet count by itself, is not that low, and as noted, your not going to possibly bleed out until well below 20...

Other tests, and possibly a Bone Marrow Biopsy may be needed to diagnose any condition you might have...

here were my counts when I was diagnosed... all were low...
Code:
Component  Standard Range  6/14/2013
RDW-CV     11.6-14.4 %     18.1
RDW-SD     35.1-43.9 fl    59.1
HGB        13.7-17.5 g/dl   8.0
HCT        40-51 %         23.3
PLT        150-400 K/ul      70
RBC        4.63-6.08 M/uL  2.57
WBC        4.2-9.1 k/ul     2.0
NEUT%      34-68 %           46
NEUT       1.8-9.0 K/uL     1.0
Best of luck to you...
__________________
Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
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  #5  
Old Sat Dec 21, 2013, 02:59 PM
edbk35 edbk35 is offline
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Join Date: Dec 2013
Location: Severn, MD
Posts: 5
Quote:
Originally Posted by Whizbang View Post
edbk35,

My numbers were all VERY low all at once, having just low platelets can indeed be a sign of low vitamin D... my vitamin D was at 30 which was border line for vitamin D, and can be linked to low platelets...

Also if you are taking medication for your type 2 diabetes, it might be likely that it may be affecting your platelet counts...

I would not be freaking out just yet, as a 77 platelet count by itself, is not that low, and as noted, your not going to possibly bleed out until well below 20...

Other tests, and possibly a Bone Marrow Biopsy may be needed to diagnose any condition you might have...

here were my counts when I was diagnosed... all were low...
Code:
Component  Standard Range  6/14/2013
RDW-CV     11.6-14.4 %     18.1
RDW-SD     35.1-43.9 fl    59.1
HGB        13.7-17.5 g/dl   8.0
HCT        40-51 %         23.3
PLT        150-400 K/ul      70
RBC        4.63-6.08 M/uL  2.57
WBC        4.2-9.1 k/ul     2.0
NEUT%      34-68 %           46
NEUT       1.8-9.0 K/uL     1.0
Best of luck to you...
Here are mine from Oct.

WBC 6.1 range 4.5-11.0
RBC 4.85 4.20-5.40
HGB. 14.9 13.0-16.0
HCT 45.3 36.0-47.0

Vitamin D 21.1 range 32-100
B12 464 range 191-980

NOV: platelets 96
Protime: 10.4 seconds range 8.4-11.04
INR 1.0 range 0.8-1.2

I am on no meds at all including no diabetes meds. I take a probiotic, multi vitamin and 1000 mg vitamin D
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  #6  
Old Sun Dec 29, 2013, 11:54 PM
edbk35 edbk35 is offline
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Join Date: Dec 2013
Location: Severn, MD
Posts: 5
Update

I went to the appt. on Friday. He thinks or is leaning towards ITP. He said my blood work looks good except for the platelets. He did a physical exam and said that was good. So I go in on Jan. 23rd for lots of blood tests including a warm platelet count. He is also going to look at my blood under the microscope. He did mention possibly having the bone marrow biopsy too. UGH... That does not sound fun!!
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  #7  
Old Mon Dec 30, 2013, 10:23 AM
Whizbang Whizbang is offline
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Join Date: Aug 2013
Location: Central NJ
Posts: 299
edbk35,

Have them check your Vitamin D level also... Low vitamin D can contribute to low platelets counts...

Also are you on any other medication / supplements???

Do you take a lot of OTC medications? Many pain killers can lower blood and or platelet counts also... I was taken off PepcidAC (Dr. said it affects platelets), as my platelets have been trending lower lately... and I'm also borderline Vitamin D deficient...

Best of luck...
__________________
Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
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  #8  
Old Fri Jan 3, 2014, 11:51 AM
edbk35 edbk35 is offline
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Join Date: Dec 2013
Location: Severn, MD
Posts: 5
Question

Quote:
Originally Posted by Whizbang View Post
edbk35,

Have them check your Vitamin D level also... Low vitamin D can contribute to low platelets counts...

Also are you on any other medication / supplements???

Do you take a lot of OTC medications? Many pain killers can lower blood and or platelet counts also... I was taken off PepcidAC (Dr. said it affects platelets), as my platelets have been trending lower lately... and I'm also borderline Vitamin D deficient...

Best of luck...
I am low on D. My primary doctor just put me on the prescription D once a week dose. I tried over the counter D for 3 months and it only changed a itsy bitsy amount. I am on NO meds... Do take Tylenol occasionally. I asked Hematologist about low D and platelets but he said it doesn't cause it. However I have read online it can be linked.
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  #9  
Old Sun Jan 5, 2014, 07:49 PM
Cheryl C Cheryl C is offline
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Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 843
My Vit D was very low and my personal experience is that taking Vit D regularly will result in some improvement in platelet levels. My platelets are still not normal but have improved by around 10%. I find that taking it regularly also helps me sleep better.
__________________
Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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  #10  
Old Sat Jan 25, 2014, 08:41 AM
edbk35 edbk35 is offline
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Join Date: Dec 2013
Location: Severn, MD
Posts: 5
Update

I went to the lab at the oncology group this past Thursday and he tested my platelets right after the test was drawn. He also did ten other blood tests. THEY WERE ALL NORMAL!! My platelets were 160. In Dec they were 77 at my regular doctor. He even looked at my blood under a microscope and said all was good!! He e plained that whenever I have a CBC at a place where the tubes aren't tested right away... This will probably happen again. My blood clotted by the time it was tested. Giving false LOWS. I was so happy to get this news!! I wish everyone here the best of luck.
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  #11  
Old Sun Jan 26, 2014, 05:53 PM
Cheryl C Cheryl C is offline
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Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 843
That's really interesting! I didn't realise that haemolysed blood would give lower counts.
__________________
Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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  #12  
Old Mon Jan 27, 2014, 08:58 PM
Chirley Chirley is offline
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Join Date: Oct 2007
Location: Logan City Australia
Posts: 1,100
That happened to me once too. I was having Vidaza and had my routine blood test out of my port. The haematologist came and told me I needed a platelet transfusion. I was a bit shocked, my platelets had never been much below normal before. I asked for a second blood test and the platelets came back just below normal and I didn't need a transfusion. Turns out the blood had clotted a little on the first test.
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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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