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  #1  
Old Thu May 26, 2011, 03:39 PM
DebJM78 DebJM78 is offline
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Low platelets (since 04) and low mpv with bleeding

Hi my name is Debbie. I have dealt with low platelets since August of 2004. I have been hospitalized twice once when they went into the 60's range and then the start of this year when they went down to the 40's. In addition to this I have dealt with feminine bleeding once from Sept 04-Dec 06 and again now since the end of Dec. 2010 though this time it was darker, stranger, and just well off.
I have at least one tooth and in a sense more than one that must be removed sooner than later. Because of the platelets I was referred to a jaw surgeon who is a specialist but they won't remove the tooth unless I have release from my hematologist. Well most recent two tests have platelets back down in the 70's and a mpv of 6.6 and another of 6.8.
Next week I go in to a gyn who is doing and ultrasound and possible biopsy.
Then on June 7th I have my meeting with the hematologist to discuss things including a bone marrow biopsy/aspiration.

My rbc and wbc all but twice have been in normal range, absolute levels normal, lymphocyte percentage tends to be a few points high unless I am sick in which they drop below. My b12 is 269 and iron levels are fine. Just kinda lost and .... my sister has lupus but I have tested negative. I have extended family (aunts, uncles, cousins, etc) that have had bone and/or other types of cancer and well I can't help but be concerned.


So that is basically me...
Trying to learn about the bone marrow biopsy/aspirations and also figure out what the low platelets and low mpv might be.
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  #2  
Old Thu May 26, 2011, 09:39 PM
DanL DanL is offline
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Debbie,

thank you for sharing your information. having lower than normal platelets can be disturbing. many of us on the forum have low platelets. i have been livimg with counts between 20k and 35k for about 1 year now. the important considerations are how well your platelets function and whethher or not you experience serious bleeding events, which it sounds like you may have over the last several years. most medical procedures are safe at above 70k platelets according to literature, though dental work can be done at lower numbers. platelet transfusions are an option for medically necessay procedures.

A bone marrow biopsy, while uncomfortable, is not typically a difficult procedure, and it provides the doctor with a wealth of information in a short period of time - like 2 weeks. if you have already been tested fo lupus and other auto-immune diseases, then the bmb makes a lot of sense. this can rule out or diagnose many different issues. knowing the answer has provided me with more peace than the several months of uncertainty i faced early last year. I wish you great health and great luck.
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  #3  
Old Fri May 27, 2011, 09:25 AM
Marlene Marlene is offline
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John had surgery to repair a torn quad tendon. At the time, his platelets were in the 30's so they transfused platelets prior to and during surgery. He ended up getting some red cells after but then his HGB was only up to 10 at the time and he had already lost some blood from the torn tendon. Even when his platelets were at 8K, he did not experience serious bleeding.

Both our docs say the 50K is the level at which you can have surgical procedures.

You may want to find out what your clotting time is. There are other factors involved with blood clotting.

Your B12 level, is at the low end of normal. According to more current thinking, a level of 500+ should be the target for "normal" levels.

If they haven't already check, ask them to check your Vitamin D & K, folate, B6, zinc, and copper.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #4  
Old Fri May 27, 2011, 01:47 PM
DebJM78 DebJM78 is offline
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Dan L - Thank you so much. The uncertainty is what does bother me the most. I am so tired of hearing "inconclusive", "nope not thus", and 'well just not sure yet". I work to be positive and not get stressed with health issues practicing meditation, working to eat healthy, and similar. When it doesn't make things improve it gets frustrating.
The Jaw Surgeon says because of how deep the root of my tooth goes (likely will loose a false tooth in the process of removal as well which isn't fun) he wanted to see 100 level plus the Hematologist giving permission.

The hematologist at first said that the bmb might be ok to wait to do till I get sick again as based on my past my platelets will be that much lower. But now there is some debate because of the mpv- but other stuff is within normal or acceptable ranges.
Sorry in part for the rant it just gets frustrating the not knowing and paying out of pocket. Good or even bad to know would be better.


Marlene I know that my Iron, Vit D and Folate are very good (well just above the average/center of the reference ranges). I do know my osmo calcium tends to be low normal to low. I am not sure about zinc or copper however. I will definitely talk t the Hematologist about getting those checked.

I will talk again to the Hematologist and the Jaw Surgeon because from what both of you are saying they shouldn't really be concerned. I suppose the jaw surgeon just wants to be careful with the depth of the root and the Hematologist is being careful but yeah. I ultimately need a bunch of teeth pulled but can only afford one at a time and barely that. I do know this tooth is really bothering me; ever since it spasmed again this past Friday I have had a constant headache/pain near my left eye and the very small hard well I assume lymph in front of my ear has been very tender. I have found some of the trigger points on the roof of my mouth that help drain sinuses but they only barely alleviate.

Thank you very much for both your responses.
~Deb
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  #5  
Old Fri May 27, 2011, 01:49 PM
DebJM78 DebJM78 is offline
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My clotting time is within normal limits when they tested it a couple months ago.
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  #6  
Old Wed Jun 1, 2011, 02:05 AM
mscrzy1 mscrzy1 is offline
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Have they mentioned Idiopathic thrombocytopenic purpura (ITP)? Just curious.
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36 yr. old, dx SAA in Jan 1996, treated with ATG in Mar. 1996, off cyclosporine Sept. 1996, last blood transfusion in Aug. 1997, slow decline in counts again November 2010, AA and current count decline thought to be caused by lupus, currently taking 400mg Plaquinil
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  #7  
Old Sun Jun 5, 2011, 11:55 PM
DebJM78 DebJM78 is offline
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That was what they talked about back when I first had the platelets drop. However with ITP the MPV levels are high or at least higher end of normal. My MPV has been low since Dec. unfortunately before that I don't have many records since 2008. As far as low the norm range for the lab starts at 7.5 and mine have been between 6.6 and 7 - so a bit low (can't find much on what really is or isn't low). With low it points to a production problem instead of a destruction problem as is the case with ITP.

I have kinda given up trying to find any more research online for now. At least until after the visit with the Hema this week. He needs to give me clearance/release for the teeth pulling but also for a d&c w/hysteroscopy.
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  #8  
Old Sat Jun 25, 2011, 07:50 PM
DebJM78 DebJM78 is offline
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BMB end of July... now waiting fun

I got one of the teeth pulled that I needed removed. There are a bunch more but they will be waiting till sometime this fall.

The BMB is scheduled at the end of July. I have an apt with the endocrinologist this coming Thursday.

I can't afford the hysteroscopy so that bleeding well for now is going to continue.

Got a membership at a gym though so that I can well either get a bit more fit or have more understanding of why I have such difficulty with things as well as keep better track of energy levels.
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  #9  
Old Fri Jul 29, 2011, 04:12 PM
DebJM78 DebJM78 is offline
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One week to go!

Bone Marrow Biopsy/Aspiration was definitely painful!! It also took a lot longer than the 30min that was expected. The dr had a bit of a time getting into the bone...as he said I have dense strong bones!
First thought was I always knew I was "big/strong boned" haha... next though is that if my bones are nice and dense/strong than I would have thought that I wouldn't have so many problems with teeth and also that my calcium levels would average higher than the borderline low that they do... then again being female and bleeding for 3 years in the past, 6 months this year, and still some excess bleeding now it makes sense...

One week and I should be learning what is happening... hoping and praying for any result that isn't 'inconclusive' or fully 'normal' - would be nice to have something more specific to look at, understand, and know where to start for making it better.
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  #10  
Old Fri Jul 29, 2011, 11:40 PM
lindy lindy is offline
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Deb

Thanks for the update.
Hope you get a better insight when your BMB results are out.
By the way how are your counts (RBC, WBC, PLT) now?
Hope they are stable.
Good luck!
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  #11  
Old Sat Jul 30, 2011, 06:11 PM
DebJM78 DebJM78 is offline
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Platelets are hovering between 66 and 78 which in consideration of "others" is good. But, for me that is about 40-50 below what my old average was (115-125). My MPV is also still running with levels of 6.6 and 6.8 though my clotting factors are fine.

WBC, RBC, HCT, HGB, MCV, and RDW are all still in normal ranges which again helps to decrease chance of anything major. My Lymph % is still running 2-10% above normal. Creatinine and Calcium borderline low but not below normal for a few months. Globulin low and A/G Ratio high. Total Billi, AST, and ALT high.
My B12 when it was checked a couple months ago was at 269 and the range provided was 200 to 1200. C-reactive was 1.5 with range <.8 so almost twice as high.


I was put on Metformin for my glucose levels as I finally got a fasting number above 120. It isn't giving much in the way of side effects.

While after the transvag. ultrasound things stopped for a week or so well now problems are back though different. It is brown and occasionally clotty pretty much every day just not as heavy as before the transvag. Still don't have money or likelihood of it for awhile to get a hysteroscopy (camera procedure) to take a look inside. But if something comes up from the bone marrow biopsy who knows it could shed some light.


Did get to talk a bit more with the hematologist though about liver enzyme levels when I went in for the biopsy. My endocrinologist said that the diabetes explained the high levels along with my weight. The thing is that my highest liver enzyme levels was back when I first got sick in 2004 and at/after my hospital stay in 2005. At that point in time I wasn't even pre or borderline diabetic and at least for the 04 readings was only about 20-30lbs overweight. So, I asked the doctor if there was anything that could have been the initial cause of the thrombocytopenia and the liver enzyme levels that would have stayed with me... He knows i test negative for the Hep A, B, and C but as he said there are other variations beyond these that could have done something though it is hard to be sure as with testing negative well.. yeah. But does have me now looking in other directions for possible clues. He also said it should be fine for me to have Milk Thistle Tea especially if I am doing less than the "therapeutic" dose but if levels do improve perhaps do that - basically keep monitoring.
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  #12  
Old Mon Aug 1, 2011, 09:57 AM
lindy lindy is offline
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DebJM78

Thanks for sharing.

Just wondering how long you had your old average holding at 115-125 before your current count of 66-78? Was your MPV also at level 6.6-6.8 when your platelet count was 115-125?

Hopefully when your BMB results are out you will get a clearer diagnosis.

As for myself my platelet count is hovering close to 100. Other counts are normal so hematologist monitors my blood count once every 3 months.

Take care!
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  #13  
Old Wed Aug 3, 2011, 11:24 PM
DebJM78 DebJM78 is offline
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Past and tomorrow

Well... tomorrow I learn the results plus before then going with my sister who has Lupus to her apt. with a surgeon about mitral-valve repair/replace so even outside of my wonderment about results am nervous for my sister.

Unfortunately reading through lab tests going back to 2004 only one time is MPV measured and that level was 7.4 with range 7.5 to 11.

My platelets from Sept 04 until Jan 05 ranged between 65 (when in Hospital Jan 05 - in 70's Sept/Oct 04) and 105 (Nov/Dec 04) but then a month or two later went up to 116 and then basically from then until 2009 I wavered with results between a low of 110 a high of 130 but mostly resting between 115 and 125 or so.

I don't really have any labs from 2010 as without insurance and without any strong visible problems other than occasional petechial rashes (for some reason they occur around platelet count of 100 but not often above or below that???) and then the bleeding issues that started the end of Dec along with getting some virus or something which had me in the hospital and platelets down to 45 then they made their way up one time to 95 and then slipped back down to the 60's then hovered around 70 the past few times though one reading did have an 81.

Will post tomorrow about my results... One of the students at the college where I teach told me about her experience a few years ago with NHL and then of course knowing my Uncle had low platelets for a few years and it developed into NHL... course my blood work doesn't point to anything that major I don't think however at least from my reading even if I go by a different labs range for mpv (7.0 instead of 7.5 for low) my 6.6 is still low which points to bone marrow so.... Yeah I know stop thinking, get sleep, and *smile*

Last edited by DebJM78 : Thu Aug 4, 2011 at 10:32 AM.
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  #14  
Old Thu Aug 4, 2011, 03:56 PM
DebJM78 DebJM78 is offline
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Partial Test Results from BMB

Well some of the test results are not back yet....

As for what is back:

Cytogenetics Analysis in which I am "apparently normal female with no evidence of an acquired clonal abnormality"

And Flow Cytometry showed no NHL, Leukemia, increased blasts, no monoclonal B-cell population, or aberrant T-cell. However a mild left-shift was present within the myeloid cells but as it is mild is inconclusive of anything.

The rest of the results should be in by Monday. Those results will include updated CBC and CMP but also the results for tests of anemia, metabolism, and various tests about megakaryocytes.

In the meantime from reviewing medical stuff and discussion am going to have a month or two with some b-12 shots and see if that will improve b12 levels a bit, improve liver function, and via those things possibly improve platelets.
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  #15  
Old Fri Aug 5, 2011, 12:07 AM
lindy lindy is offline
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BMB results

No expert but results seem ok so far.

Just wondering if your RBC & HGB are normal why do you need B12 shot?
Perhaps B12 will help with platelet count. Keep us posted. Thanks.
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  #16  
Old Thu Sep 1, 2011, 04:04 PM
DebJM78 DebJM78 is offline
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Sorry for long delay...

I actually jut got all the rest of my results back though it was because I was busy not because they did not get them in. My sister had open heart surgery a week ago and before that there were a number of apts and since as she has lupus and a number of other problems that complicate things.


Onto the results

With the CBC that was done at the time of the BMB:
Platelets were at 84 (so higher than the 70's range I had been in but still much lower than my old average).
MPV (mean platelet volume) is still down at 6.8


The Morphology Analysis showed:
Hypocellular marrow with intact trilineage hematopoiesis
Iron stores are significantly decreased
Mild Poikilocytosis (spherocytes present)

Flow Cytometry (as I already mentioned in a previous note)
Normal just with the mild left-shift within myeloid cells


-----------
I am taking the b12 shots, metformin, and a multi-Vit with 100% dv Iron...

Next blood tests are not till October so will know then if this is working blood wise. I know since taking the b12 shots by energy and focus has been much better and I am not getting as many headaches.
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  #17  
Old Wed Sep 7, 2011, 10:24 AM
lindy lindy is offline
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Thanks for the update Deb.

Good to hear results seem fine. Hope those B12 shots will improve your counts in the next blood test in October.

Take care!
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  #18  
Old Fri Oct 28, 2011, 07:49 PM
DebJM78 DebJM78 is offline
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Just had a new cbc and cmp done and now have to go back to hematologist not only because of suggestions by endocrinologist but because while my sister was recovering from open heart surgery there were some complications that resulted in knowledge of some genetic issues. Something called Factor 2 and Factor 5 were both mutated and her hematologist suggested that with my low platelets I should get it checked.....never heard of these before so...

CBC:
MCH slightly above normal (which it has been at or just above normal for years but never have heard anything to it meaning anything)

Platelets are back down to 72 (this lab cbc didn't include mpv though)

Lymphocyte % was a few points high (counts are always normal other than when in hospital but except when in the hospital my percentage are almost always high).

Globulin slightly low (this is usual that it is either the low number or a tad below again no comments ever been made).

A/G Ratio is high (again this is usual result for me)

AST back up to 54 (maybe metformin but then I have had off/on high levels for years just not this high in awhile)
ALT back up to 83 (highest its been since Feb 2005 which was a spike up from average - which is still elevated).

Triglycerides are now up at 314 and HDL is only 38 (other Cholesterol levels are very normal and good).

A1c is down to 5.7 from the 6.1 it was back in July which is great.




I will be talking to the hematologist (on request of endocrinologist) about doing iron levels since the BMB showed depleted and/or decreased (different parts of BMB) for Iron and checking to see if the b12 shots are helping and what that level is now.
Plus will be talking about those Factors.
No clue why platelets are back a tad lower but then I also do not know a lot of other things either.
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  #19  
Old Tue May 1, 2012, 10:20 AM
JoaquinM JoaquinM is offline
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Quote:
Originally Posted by Marlene View Post
John had surgery to repair a torn quad tendon. At the time, his platelets were in the 30's so they transfused platelets prior to and during surgery. He ended up getting some red cells after but then his HGB was only up to 10 at the time and he had already lost some blood from the torn tendon. Even when his platelets were at 8K, he did not experience serious bleeding.

Both our docs say the 50K is the level at which you can have surgical procedures.
I had liver surgery 15 years ago, to remove an adenom the size of a fist, caused by the continuous tetosterone intake for 15 years after SAA (treated with horse ATG).
My platelets count was at 44K and the surgeon indicated vitamin K injections in a week period (I believe they were 2 shots), then retest for platelets. They went up to 55K and I was operated the next day "to still get them fresh". They used a laser scalpel to reduce bleeding, I didnīt need any transfusions at all, not before, during or after surgery. Before surgery I "donated" my own blood in case it was needed during surgery, and they didnīt use it either (it was the first blood unit to be used if needed). The tumor tested as benign, but it was just about to turn into a bad one, they removed it just on time.
Because the adenomīs cause was most likely the steroids intake for so long (they compared it with bodybuilder diagnoses to make a parallel), I had them completely removed from one day to the other, and my platalets count dropped from 45K to 30K. I have been living with those low levels since then, 15 years ago.

Kind regards,

Joaquin
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  #20  
Old Fri Jun 15, 2012, 09:24 AM
DebJM78 DebJM78 is offline
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Updates.... and passing of sister

I had forgotten about this forum... well a lot has happened since my last post.
My sister who is 18years older than me passed away in part from breast cancer and through the process learned just how many cousins and aunts have had cancer of some kind or another as well as other platelet issues.

As for me...
Most recent test platelets are back up to 82 from 37 a couple months ago.
However my IRON levels are being odd.

In February: low TIBC (215), high Ferritin (255), low end normal UIBC (153), general Iron good (62), and Iron Sat % ok (29).

Well now (June 13th): Tibc (333), Ferritin (16), UIBC (309), general iron low (24), and Iron Sat % low (7), and first time getting it a reticulocyte that is just at end of high normal (3.0).


Well, without going back to my bone marrow biopsy the doctor is now asking me to go on an iron supplement.

However, with all that has been going on I did go back to my BMB last year and read where it said I had "Zero Stainable Iron" in one part and "iron stores significantly decreased" in another part.

So, definitely going to be working at increasing leafy greens, artichokes, apricots, eggs, some meat, and taking an extra iron supplement.

Also now scheduling a mammogram so.... le sigh
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Old Fri Jun 22, 2012, 09:42 PM
DebJM78 DebJM78 is offline
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Question Gyn apt... $$... planning things??

Well....had a basic screening that really was uhm basic summary that the gyn didn't particularly like.... and addressed other issues.

Gyn on Thursday said that he wants me to have, within six months, a diagnostic mammogram with ultrasound. It shouldn't be too pricey so that is good. Hoping that my sisters Brac Analysis will suffice because I don't have the $$ for that especially with the other stuff...

On July 10th I go in for a uterine/endometrial biopsy along with ultrasounds. Not sure on price but I believe it is affordable.

However.... he impressed much more seriously this year than last year that he really wants me to have the Hysteroscopy with DNC. The problem is that the charge is roughly $12,000 with $6,000 upfront. I don't have anywhere near that amount especially since I lost one of my adjunct positions because of the school no longer being made into a new entity. Not sure how I am supposed to come up with the money but with everything that has happened with family I do believe i need to. Le Sigh!


He was glad to hear I was on an iron supplement and said that the menorrhagia is having some effect but I also know I have been having that since 2004 and it is not as bad as it used to be (well depending on how you look at it).
He also, upon seeing other family history, wants me to go back and ask the Hematologist to do the genetic screening of Factor 2, Factor 5, and MTHFR.
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  #22  
Old Mon Aug 27, 2012, 07:59 PM
DebJM78 DebJM78 is offline
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Updates....

Platelets went down to 30 for a couple weeks then up to 117 six days later and then down to 90 five days after that....
MPV remains low except when the platelets were at 117 and the MPV value was normal for the first time that I have been keeping records.

I am on Iron now for the anemia and still do the b12 shots once a month...

Beyond the up/down of platelets these days did have a D&C with Hysteroscopy after an endometrial biopsy didn't look so great....

Complex hyperplasia without atypia plus from the colposcopy I have both chronic and acute cervicitus.

Fun times...
I am going on provera to help with the hyperplasia. Beyond that I have other things to start really working on and figuring out.
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  #23  
Old Tue Aug 28, 2012, 06:39 PM
Ruth Cuadra Ruth Cuadra is offline
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Deb, I'm very sorry to learn of your sister's passing. From what you've written about her, it sounds like you were a tremendous support to her during her illness. I hope your memories of her in happy, healthy times are comforting to you now.

You mentioned back in June that you were going to start taking iron supplements. Do you know if they have helped to improve your iron levels?

There is a correlation between low platelets and low MPV. MPV, as you probably know, measures the average size of platelets. It is high when there is destruction of platelets (as in ITP and myeloproliferative diseases) and low when there is impaired production (as in aplastic anemia and MDS). Did you ever get an official diagnosis from your hematologist following your bone marrow biopsy?

The presence of an infection, as you seem to have with the cervicitis, can also cause your platelet count to drop. I took Provera for a long time before, during, and after my transplant to stop my bleeding when I had little blood to spare. I hope it helps you as it helped me.

Regards,
Ruth
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