High Platelets

Hi Ingrid077, I hope you get definite answers soon. I was diagnosed in June 2022 with ET JAK2, an MPN disease. Hematologist ordered labs and did a bone marrow biopsy. You might want to consider a consult with an MPN specialist.
Eileen

I ran high LDH for the first few years after diagnosis. Normal in the 5 yrs I have been taking HU. LDH + EGFR+ metabolic panel + CBC are just part of the routine blood tests. I think most hemos will run some or all of these tests more frequently when you first start HU to monitor its effects. Abundance of caution? Doesn't mean they think there are additional problems. I think as time goes on, anxiety goes down. Outside of a stroke or coronary/pulmonary thrombosis, none of what goes on with ET is an emergency. But it's anxiety making when you are first diagnosed.

Hi @mtnlife, we’re often our own worst enemies when it comes to all things medical. I don’t know why we tend to think of the most negative possible outcome but that’s just the way we’re built! That just feeds into the anxiety, when in reality most of what we fear never materializes. So i hope I can help tamper down your anxiety over the bloodwork and having essential thrombocythemia.

From the Mayo Clinic site:”Although there's no cure for essential thrombocythemia, treatments can control symptoms and reduce the risk of complications. Life span is expected to be normal despite the disease.”

Like you mentioned, the CBC is obvious because your doctor is suspecting a blood disorder, in your case too many platelets. So it stands to reason they’ll want a full peek at your blood levels; Red blood cells, white blood cells and the subtypes such as lymphocytes, neutrophils, etc., and platelets (size and amount)

You’re concerned because a metabolic panel and LDH test were ordered and not sure why. Basically, the comprehensive metabolic panel (CMP) is a series of blood tests that give your doctor a snapshot of your body’s liver and kidney function and electrolytes. That’s actually a fairly routine lab to run so it’s not out of the norm at all for your doctor, when trying to narrow down a diagnosis for you, to order these tests. They give a good picture of the function and health of your body’s operation. I have blood draws every 2 months for a CBC with differential, LDH, CMP, magnesium. Just routine.

The LDH is lactate dehydrogenase and that blood test can show if there is any tissue damage occurring in the body. Having an elevated amount doesn’t necessarily mean you have a medical condition. It can also be affected by an injury, disease or an infection, and even some medications. So the fact that yours was just slightly elevated isn’t anything to cause alarm.

We have to look at blood work from the perspective of our doctors. Those tests are a means of unraveling a mystery that needs solving. An example is if your red blood and white counts are normal but your platelets are high, then your doctor can dismiss certain other disorders and narrow it down to the platelets. If your LDH is high they may look for liver or kidney damage by ordering other tests to narrow that down. Our bodies are incredibly complicated and it’s amazing the amount of information our blood and cells hold. The only way to know is by sampling. So don’t be afraid if there are more blood draws in your future. They are essential to diagnosing.

From reading some of your previous replies, you’re already on a low dose blood thinner. If that is keeping your platelets from being sticky and causing blood clots, that may all that’s needed for you. There are other medications available that can help slow the progression and side effects of ET.

What are you fearing the most?

Just the hydroxy. i am still waiting to learn what the next step will be. My appointment originally scheduled for December 29 was postponed until tomorrow as my doctor had the flu. Anxiety is really getting to me. I have bloodwork scheduled before the appointment. I can understand why a CBC would be ordered, but why a comprehensive metabolic panel and LDH test at a follow-up? Mu metabolic panel is pretty normal, but the ldh test I had las month was slightly elevated at 288. I am resigned to a diagnosis of essential thrombocythemia but scared that it may be more serious than that.

I’ve had a high platelet count close to two years. They’re calling it Thrombocythemia they did some genetic tests yesterday and I haven’t had bone marrow done yet . I’ve started having problems from bleeding taking the aspirin . He said to stop the aspirin and we could take the platelets out with a machine that removes from your blood . My feet and hand turn all shades or red and burn like fire all the time or their cold as ice turning white or blue tingling . The haven’t felt well in very long time . The blood doctor thinks I have MPN or something like that . I am a smoker which is likely not helping this situation but I’m struggling to quit it’s a very strong addiction. I hope we will all be ok . This is very scary . Really it is . Looks like there’s no end to this will be an ongoing problem.

My Dr discussed Hydro and Peg, but when I asked what she would do in my case, she said Peg because while Hydro absolutely brings down platelet levels, Peg has the additional benefit in some patients to prevent the ET from going into the more dangerous fibrotic mode of the disease. Of course no guarantees and many folks are on Hydro for life with no new progression. I did see that word mentioned a few times in my bone marrow biopsy (which my Dr said I do not have at this point) so maybe the fact that my platelet levels were rising so fast made me a better candidate for a more aggressive treatment. My levels went from 600 to 950 in four months. So after my first month on weekly Peg injections, I came down to 900...I'm taking that as a win as it stopped the creek from rising. We'll see next month!

Most seem to start taking Hydroxyurea and low dose aspirin when first diagnosed with ET JAK2. This medication is inexpensive. What was your doctor’s reasoning?
Best wishes for your journey. Eileen

Younger people are turning up more frequently with MPNs, and research is giving this a lot of attention. Hopefully this will lead to better new therapies!

Eating heart healthy, maintaining a good weight, and getting regular exercise to maintain circulation is good for everybody, especially people with ET. Whatever can lower your overall clot risk is good.

But none of that will lower your platelets to normal levels. There are lots of scam artists out there willing to tell you otherwise to get your money.

Women in childbirth years are increasingly being prescribed Pegasys because it is safe to use while pregnant. HU is not. Maybe chat with your doc about this? It doesn't come up with us older ladies.

Hello. I'm 36 yo female. I was diagnosed with ET as well about 1.5 years ago. Today my WBC had come down to 11.4 and platelet count is 773. My doctor started me on HYDROXYUREA 500 MG today. I do have a history of DVT's so I have to take baby aspirin everyday. My doctor doesn't understand what caused this disorder as it went unnoticed for many years through another health care provider.

I've never been on chemotherapy in my life until today. I have had 2 blood transfusion in 2016. From what I'm reading as I research this medication and more about ET is that there is no cure and I'll have this disorder the rest of my life and it typically happens to people aged 60 or older but can happen to younger people. Has anyone made any changes to their lifestyle/diet and seen a decrease in the platelet count? Any suggestions?

I hope you will continue to update us on your experience with Peg. I hear it takes longer to work, though people respond at different rates to all these meds.

It took HU over a year to move my platelets from 800 to 400s. I am very stable and satisfied with things at the moment, but all of the oral meds for ET can stop working at any time, so would be helpful to know how Peg affects older people over the long haul.

One of the fellows I talked to in the UK was moved from HU to Peg at age 75. Over there, they get it free from the NHS if HU stops working, but mental health screening is done before Peg is prescribed, and patients receive anti-depressants as needed to alleviate side effects.

Thank you for posting!