Why didn't I think of that before?

I think I may have found a local Specialist familiar with ITP. (after 10 years)
Was reading about the Leukemia Foundation raising funds for temporary accommodation for people having treatment etc. I thought maybe they could point me in the right direction & they have suggested 1 Dr. specializing in thrombo issues. I'll ask my Dr. for a referral when I see her next. I'll keep you posted.
mj

I hope she works out! let us know how it goes!

Eventually got a Drs. appt., referral & rang for an appointment with haemotologist. "No, you have to post the referral, & based on our judgment of how urgent it is, we'll make you an appointment". Got a letter back with an appt. with someone else! . . Rang & explained I wanted 'what'shisname' instead - "Oh well, you'll have to wait longer, this IS a public hospital".
Well . . I've only been waiting 10 years so what's another couple of weeks! :silly: Have an appt. booked in January. Last count 2 weeks ago was 26, so still hanging in there.
mj

That sounds frustrating! At least you got an appointment. Let us know how it goes!

Great news. Saw new Dr. today, was worried about latest count as I've had a couple of very demanding weeks with family visiting & also not sure what kind of reception I'd get. (Here's a nutter who won't do as she's told)
But he was great & apparently my count Friday was . . . 55! Couldn't believe it. This sure is an unpredictable condition. More concerning was a low iron count.
We had a good talk about ITP/treatment in general, & he is happy to monitor me. AND 'spleen' was only mentioned as one option.
So very relieved & happy I have at last found someone to relate to. (apart from you guys of course)

mj

That's great, MJ!

MJ that is really great - both your new doctor and your count!

PS - Think we have a lot of us here who are a nutter & don't do what we are told

Hey Melinda I resemble that statement! Nutter #1 here!

So glad to hear about the appointment sounds like this doctor may just be a keeper!

Sandi, Melinda, Winnifred, thanks for your support.
New Dr. is the only one so far that hasn't made me feel silly or intimidated & that is saying something!
I am a bit concerned about low iron levels (he didn't say what they were) & need to follow up on that.
Cheers,
mj

You might just need to take some iron for a while. Did they check your ferritin levels?

Not yet - a few tests ahead.
I eat well generally, though not as much red meat as I used to. Just something else to keep me on my toes!
mj

I say draw a blank!



I mean forget out the blood tests ahead and enjoy the goodness of the situation count not bad decent doctor. Worry about the other stuff later!

MJ I agree, worry about the other stuff later - if your iron was really bad I would think the doctor would have said so or put you on something or done something.

Ahhh I think there are a number of us here that fit the #1 Nutter status

I normally wouldn't be too concerned, however my last bowel sample results came back 2 neg 1 pos, & I have been feeling very tired & struggle to get my breath when doing anything mildly strenuous.
So I will do a repeat sample & blood test & go from there.
It doesn't help that I have family history of bowel cancer & several other cancers.
mj

More test results - Iron levels 'satisfactory'
Platelets 28 (I'm convinced the last results were a mistake)

Faecal samples - 3 positive for blood
So I am bleeding somewhere . . .
Spent the best part of the morning learning about bowel cancer until it occurred to me that it could be anywhere internal. So Dr. appt next week to follow up & I assume more investigation.

Any one else had internal bleeding issues?
mj

MJ - it could be something as simple as hemorrhoids. Let the doctors figure it out.

Have been advised to have a colonoscopy to find source of bleeding & will have ivig to get platelet no.s up for procedure.
Bit brain foggy with too much to think about - a walk on the beach definitely required!! Or maybe a therapy session with the vacuum cleaner!
mj

Twice when my counts drop to zero I had blood in my urine and bowels. We assumed I was bleeding somewhere but did nothing just treated my ITP. Figured it was from the low platelets and no further issues after my counts went up.


Occult blood test - picks up blood in the stool. Question you did not have red meat for so many days before and during the tests right? because if not it change the results. That said the blood could come from anywhere. As our bodies do not digest it. So if you had a bloody nose or gums that bled or like me an ulcer who knows.

Best to get the colonoscopy and not worry unless the doctor says so. There can be many reason for it and some are simple and some are complex. Worrying can only make things worse!