New to site - trying to research/figure out things

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.

Hi

Sounds like you don't have ITP which is what we all have, as when we have a low platelet count we have a high MPV. We have a problem primarily with over destruction of platelets whereas you simply don't produce enough. It may be just normal for you and of no concern. Let's hope so.

As for the bone marrow biopsy, I had one a couple of years ago and found the whole procedure was fine. Let us know how you get on.

Deb:

I'm confused as to why you were hospitalized with counts that high. What symptoms did you have? Most don't even treat out-patient with counts in the 40's and up.

Ann is right about the bone marrow biopsy....not as bad as it sounds. 20 minutes and a band-aid.

Thanks Sandi and Ann.

Until about 2 months ago they had called it ITP and my platelets would average between 90 and 120. Other than constant feminine bleeding, petechia that would show up across my chest and neck, along with enlarged lymph nodes, and general weakness (can't really give massage anymore I get extremely worn out - same with working full time) there were not many other symptoms except when I got sick.
In 2005 the first time I went into the hospital my platelets were in the 60's, I had a petechia rash across my chest arms and neck, was having difficulty swallowing (assumed pharyngitis but they said it was inconclusive along with various other things they were testing for), had been bleeding vaginally since Sept 09 when I first found the low platelets, and had a number of other symptoms.

This recent time, going in on 12-31 and getting out of the hospital on 1-2 I again had problems swallowing, had a lot of pain in chest area (petechia rash again), had a temp of 103, platelets went down to low 40's, and was kept in semi-isolation as wbc, rbc, platelets, and similar were extremely low. Was tested for a number of bacterial and viral infections but everything came back negative. However the fever went down and the petechia went away so on the 2nd was released with platelets in the low 50's - still had the cough and chest pain. That is also the first time my MPV went down first below 8 then lower to where they have stayed in the 66-6.8 range.

Until August 2004 my platelets were always between 250-350 even when I was sick with strep throat or healthy. From researching and reviewing both siblings, parents, and other family except for those who had some pretty bad stuff going on no one has had low platelets. And those who did have some rough stuff going on never went below 70 except one Uncle who had around a 100 average for awhile, got a diagnosis, then because of radiation and other therapy had his drop to 30's.

I have tested negative for lupus which my sister has, my thyroid level are within normal ranges, liver enzymes have been off since Oct 2004 but a full liver panel comes back just a few points off or within range.

It is the constant vaginal bleeding (no not hemorrhaging nor anything that looks like either pretty blood or even old blood this is well not pretty or normal) that really stands apart.

If you know any other forums that deal with low mpv and low platelets please let me know. Yes I am going to be seeing and talking to my two doctors (Hematologist and gynecologist) but trying to do research and see if there is anything else to check for. One person mentioned zinc, calcium, and copper levels and well I don't know.
Sorry.

Yes, I'd talk to your GYN or ask the hemo about possible platelet function problems. It's unusual to have continuous bleeding even with low counts, let alone counts where yours have been.

Oh I am. Just 6 yrs later, things getting a bit worse, and well yes I do finally have good doctors but over the years I have learned things go much better and with more success when I can go in with research and proper questions.
Sadly it isn't easy to find material on low platelets and low mpv and especially when adding vaginal bleeding to the list.

Thanks and again if anyone knows a different platelet disorder group or such it would be greatly appreciated.

You're welcome here! I'd just hate to see a diagnosis missed. Keep at it.

Thanks Sandi.
Just frustrating when things aren't right but they aren't wrong enough.

Deb, USF has a benign hematology clinic. If you have not been seen there, I would recommend getting a second opinion at that clinic. Teaching Hospitals are where you find the doctors who are able to keep up on research, because they are responsible for teaching the next generation of doctors, not just seeing patients.

I saw specialists with USF Physicians group and others for a number of years... lol not to be rude but they were the ones that said my low platelets (around 70) would cause my bleeding (uhm no, you have to be a lot lower than I to have the abnormal bleeding I experience). They are also the people who constantly said I should do Birth Control even though it raised my blood pressure, I have migraines, caused rapid weight gain, oh yeah and uhm heart disease does run in my family.


Yes I do know USF can be amazing for a lot of people; unfortunately I tried to deal with them for four years and got nothing. Plus surprisingly (or not) they are actually more expensive.

I don't want new doctors I finally have doctors I like. Yes some things do not make sense - but then my history generally doesn't. From low mpv and low body temp to high c-reactive, mildly high blood pressure, and low platelets things just don't fit into a box. Normal thyroid though they refused to check the 'free' levels though I asked and had money. Sorry just a lot of bad feelings when it comes to USF regarding medical be it physicians group, resources in the area, to student health services.

More than anything else I am trying to find more research and information so that when I go to a doctor I make the most of that visit. I do not have a lot of income, I do not have insurance, and I do not qualify for any type of medical assistance because I make a little bit too much. Therefore I work to make sure every minute of my appointments is quality and I have the right questions.

I think I found a forum though that deals with bone marrow disorders and another site that deals with the low body temp where I am learning about other tests to check/double check if I desire. Granted the best I read is that the BMB would do a lot to rule out some bad stuff and rule out or show something like an anemia.

Just as an update...

I have my BMB scheduled the end of July now! I managed to get one of the teeth I needed removed extracted!

The hysteroscopy to ideally find out why I am bleeding is on hold until I either find a different doctor, different hospital, or come into a lot of money. I do not have the $10,200 or the 60% of that which would be required upfront. It really sux but oh well what can one do.

I will be meeting with an endocrinologist this week so hoping something more might be learned.

Just wanted to chime in and say good luck. The cost fo Healthcare really Sucks.