High LDH with ET?

Just an update: It's been nearly two weeks, and I have sent three messages thru the portal to the doc flagging this. I heard from the nurse last week. She said she would let the doc know. But nothing.

After 10 years of good care from this clinic, I am pretty disappointed and irritated. I spent the weekend reviewing other potential hematology oncologists in my vicinity.

Behind the scenes, this clinic was in a health care system purchased by the University of Michigan health care system, a behemoth in south central Michigan. Things do not seem to he going smoothly, and the constant upheaval in health care systems that you see in the US is another feature that causes patient worry and disruptions in care delivery.

Hoping I can scare up some answers this week.

This must be really frustrating.

"Things do not seem to be going smoothly" -- truer words were never spoken.

After 4th try yesterday, got a message this a.m. from the nurse that my note was sent to the doctor. We'll see ...

Well, nine months later with no response from hemo's office and continued high LDH and elevated alkaline phosphatase plus low RBCs, I saw the nurse at hemo's office for my yearly exam.

I expressed frustration with lack of response. Said I assumed that whatever was going on was not an emergency. Asked what I should have done to get response from them.

She said this should have been caught when LDH and alkaline ph were high again in May. Heads would roll, which is no consolation.

Ultrasound and more tests. If the root cause is not ET related, I will be referred back to primary care for further action. So, with holidays complicating things, I see a fairly long waiting period.

Husband and friends say I should have jumped on this sooner. I have always been a very assertive and proactive person. But when you feel tired for months, it's easier to let things slide. Now I feel stupid and ashamed on top of being worried. It is hard to be sick in America.

Hi @nohrt4me,
I sense and feel your frustration my CALR friend. I am blessed to still have no symptoms from whatever I have with my high platelets. I still choose just to take low dose aspirin for my high platelets. You definitely are not stupid. Honestly, I think you were wise not to get too concerned with labs earlier as mine fluctuate greatly as do my emotions. But if I had any symptoms, I might feel differently. Right now, I am just trying to figure out what Medicare Advantage Plan in my area might be better for me to try as I am very frustrated with what I chose my first time doing this once 65. Yesterday, I got a call from them saying that I could finally be scheduled with the hand surgeon to remote the “mass” in my right finger. Before they blew it off as an old injury and no big deal and no “mass”. I really want a new and different group to give me another opinion on what my finger issue is so I declined scheduling my “mass” removal with my current Advantage HMO. I still feel great and do not feel I need to change to a regular Advantage Plan with a Supplement. I have no pain anywhere, even my enlarged finger joint, and my usual tons of energy each morning. I just do not believe I am a sick person and I really am thankful I do not feel that way. Please remember the neuroplasticity of our brains and what we can achieve by knowing that. My daughter taught me that from her current psychology class. I know I am blessed to be busy helping her and myself learn lots of new ideas so I really do not have time to concern myself with possible unknowns of my health. Stay positive!
Happy Thanksgiving!

@1pearl Will have to go look up "neuroplasticity." Good luck with your Medicare shopping. We are on a new plan as of 2026, so trying to get these tests scheduled before the end of the year. As for positivity, that's harder to muster when you don't feel good.

Happy Thanksgiving to everyone here! I am thankful no tree branches came down in the high wind yesterday. Enjoying a nice cup of the "good" coffee this morning and hoping this dippy cat on my lap purrs away some of the brain fog and nausea. She is not too bright, but she has good vibrations.

Hi @nohrt4me ,
I hope you had a very blessed and peaceful Thanksgiving. That is great to hear you have a good kitty there. I love our kitty here whose name is Pearl. She often sleeps on the foot of our bed at night and always come to be with me in the morning when I wake up and take my BP and then have my coffee. My sister thinks she helps me keep my BP fine at home. Lately, I have not have doc appointments so my BP has been great! I know my systolic will be high when I go to dermatology appointment in early December if they take it. I am researching alternate Advantage Plans here and see that at least two might be a better fit for me. I am just not happy with what I chose initially at 65 and admit my mistake. The primary doc location is super convenient as close but other care is just not up to par, and not close either plus very limited.
I hope you are feeling better. I do understand how not feeling well could make it hard to be positive: I see that in my sister from her having so many aches and pains after chemo for TN breast cancer.
I am grateful for so many things today and for friends like you in this group too. It is always nice to have someone here to express my concerns who understands. I do feel blessed and I am thankful for that.

@nohrt4me

ET's a vampire on our energy. Our strength's squandered on manic cell production, our hearts struggle to pump our heavy blood, our immune systems battle our alien platelets. Who wouldn't be exhausted?

Don't blame yourself, Jean, give yourself a medal. You are doing a heroic (too heroic, I'd say) job of hiding your challenges from your husband and friends.

I am glad the NP finally took your numbers seriously. Can you get your ultrasound and other tests this year? Please keep us posted.

I prescribe daily cat and chocolate therapy for you.

@1pearl

Pets definitely lower our BP. I'd be lost without my fur babies.

Please don't fault yourself for your medical plan choice, 1pearl. ALL the plans are imperfect. Health care is a sick joke in this country.

I admire you for not jumping into surgery on your finger until YOU are satisfied that it's necessary.

Best wishes to you and your brave sister.

@janemc Ha! I'll take that cat-and-chocolate treatment. Flora (cat) thinks that's a good idea, too! I see on my doc's portal that the lab orders have been issued, so will go in next week for those. I have to check to see if any are fasting. Looks like nurse is covering a lot of bases, which makes me happy. Order for ultrasound is also there, but office has to sked that and give me the heads up on any prep. Will check in again here when results are back.