High LDH with ET?

Posted by nohrt4me (Jean) @nohrt4me, Feb 11 8:58am

Awaiting a return message from my chemo after a big spike in my LDH on at my regular blood check this month. All other results looked fine. LDH went from 180 to 300 after being around 180 for the six years I've been on HU. (I am 70 yo with ET CALR x 16 years.)

LDH was in the 300s before I went on HU, and, at the time, wasn't something docs were worried about. However, any big spikes/drops warrant a call to the office.

Will respond to this message when I hear back. Just wanted to get this issue on the board in case anyone else runs into this.

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Profile picture for nohrt4me (Jean) @nohrt4me

@loribmt Thanks. I still feel crappy, tho. More fatigue, abdominal discomfort, night sweats, mild nausea that hits at 4 pm on the dot like when I was pregnant--stuff their needles and zappers can't measure.

So I almost hope the ultrasound shows something so I don't have to whine about vague cruddiness and have them wave it away as age and write "fussy and delusional old bat" in my chart.

Sorry for my bad mood. These weather changes make things worse.

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@nohrt4me

Dry winter air making breathing even harder
Delightful GI effects of HU
Possible spleen enlargement, even if minor

. . . could all be making you feel tired and icky.

These issues are all very real, even if the silly muggles in white coats aren't aware.

As you always say: Drink lots of water!

I would add: Eat apples! Shake a leg! Snuggle your kitties!

That your blood work is reassuring makes me very happy.

REPLY
Profile picture for nohrt4me (Jean) @nohrt4me

@loribmt Thanks. I still feel crappy, tho. More fatigue, abdominal discomfort, night sweats, mild nausea that hits at 4 pm on the dot like when I was pregnant--stuff their needles and zappers can't measure.

So I almost hope the ultrasound shows something so I don't have to whine about vague cruddiness and have them wave it away as age and write "fussy and delusional old bat" in my chart.

Sorry for my bad mood. These weather changes make things worse.

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@nohrt4me. You have me chuckling a little this morning with your comment about having ‘fussy and delusional old bat’ on your health chart! I remember making some offhanded remark to my doctor during an exam last year. We had a good laugh but then I asked if my being a cantankerous old curmudgeon will be noted on my permanent record. Never skipping a beat, he replied, “Nope, I’ll note that a tongue depressor should be used to avoid lacerations with that sharp tongue!” 😂

I’m really sorry to hear you’re still having those symptoms, vague cruddiness or not, it’s still out of the norm for you. So it’s understandable that you’re concerned. And morning sickness like clockwork…sure you’re not? LOL Tis the season for miracle births…just sayin’.

With your continued elevated liver numbers, are you by any chance taking any supplements that could be irritating your liver? I think I mentioned before somewhere in the forum that I had to stop taking my daily multivitamin because the Vit A got my liver’s undies in a bunch and sent my LDH, Alk phos all a twitter. Sometimes simple, seemingly innocuous actions can cause issues. Just a thought.
Anyway, my friend, good luck with the ultrasound tomorrow. Hope it yields answers for you!

Leaving with a parting joke from Maxine:
“They say you should listen to what your body tells you. Mine just points and laughs!” Ain’t that the truth…LOL.

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Profile picture for Lori, Volunteer Mentor @loribmt

@nohrt4me. You have me chuckling a little this morning with your comment about having ‘fussy and delusional old bat’ on your health chart! I remember making some offhanded remark to my doctor during an exam last year. We had a good laugh but then I asked if my being a cantankerous old curmudgeon will be noted on my permanent record. Never skipping a beat, he replied, “Nope, I’ll note that a tongue depressor should be used to avoid lacerations with that sharp tongue!” 😂

I’m really sorry to hear you’re still having those symptoms, vague cruddiness or not, it’s still out of the norm for you. So it’s understandable that you’re concerned. And morning sickness like clockwork…sure you’re not? LOL Tis the season for miracle births…just sayin’.

With your continued elevated liver numbers, are you by any chance taking any supplements that could be irritating your liver? I think I mentioned before somewhere in the forum that I had to stop taking my daily multivitamin because the Vit A got my liver’s undies in a bunch and sent my LDH, Alk phos all a twitter. Sometimes simple, seemingly innocuous actions can cause issues. Just a thought.
Anyway, my friend, good luck with the ultrasound tomorrow. Hope it yields answers for you!

Leaving with a parting joke from Maxine:
“They say you should listen to what your body tells you. Mine just points and laughs!” Ain’t that the truth…LOL.

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@loribmt I did ask about the Vit A, and the nurse said I've been taking the mutivit for 5 years with no problem, so she didn't think that was it. But if they don't find anything on the ultrasound, I think I'm gonna try going off the multivit and see what happens when I'm due for my next blood check in March.

I slept for 11 hours last night and I feel mentally better today.

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Profile picture for janemc @janemc

@nohrt4me

Dry winter air making breathing even harder
Delightful GI effects of HU
Possible spleen enlargement, even if minor

. . . could all be making you feel tired and icky.

These issues are all very real, even if the silly muggles in white coats aren't aware.

As you always say: Drink lots of water!

I would add: Eat apples! Shake a leg! Snuggle your kitties!

That your blood work is reassuring makes me very happy.

Jump to this post

@janemc Thanks for the reminder to drink water. I do sometimes forget when I am feeling cruddy, and hydration really makes a difference. And sleep.

REPLY
Profile picture for nohrt4me (Jean) @nohrt4me

@loribmt I did ask about the Vit A, and the nurse said I've been taking the mutivit for 5 years with no problem, so she didn't think that was it. But if they don't find anything on the ultrasound, I think I'm gonna try going off the multivit and see what happens when I'm due for my next blood check in March.

I slept for 11 hours last night and I feel mentally better today.

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@nohrt4me it might be worth a try stopping the vitamins for a period of time as an experiment. My doctor didn’t think it would be the mutlivitamin either but that was the only thing that I had added on a daily basis to my routine. So he asked me to stop, ‘just to see’ and the next tests, numbers dropped back to where they were. Started the vitamin again, retested, numbers were up…so now I’m off them completely.
My liver has been very sensitive for the past 6 years since all the chemo and transplant so it doesn’t take much to have it react. As we age, our livers and kidneys aren’t as efficient and apparently the Vitamin A wasn’t being eliminated and increased to a more toxic level.

So happy to hear you managed to sleep for 11 hours!! Wonderful!! Hugs!

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So: Upshot is that LDH and alkaline phosphatase are high but may be trending downward, so hematology wants to watch and wait. The ultrasound showed no enlarged spleen, two very tiny liver cysts that are nothing to be concerned about, normal kidneys--basically nothing cancer-y that hematology is worried about.

The most likely cause of abdominal discomfort and nausea is ... gall bladder. Imaging wasn't very good due to gas bubbles, so it's on to the primary care doc after Jan 1 to see what she says.

Honestly, this was a surprise, but I'll take it, since gall bladder is a pretty easy fix nowadays.

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