MDS: Can someone explain how or why platelets go up or down quickly?

Good morning, @hlmcneely. Platelets live for about 7-10 days and are frequently regenerated. It’s not unusual for them to fluctuate, even during the day. They do it all the time ‘behind the scenes’. We tend to notice more often if we’re having frequent bloodwork done, as in your case. There doesn’t appear to be a downward trend so your numbers are fairly stable.
Do you notice any prolonged bleeding from cuts or more bruising?

Thank you for your response. My symptoms are fatigue and bruising. bleeding not an issue. I have a televisit with the second specialist on the 6th of Oct. His advice was blood work every two months and the first one I saw Friday said he'd see me in three months. He is also the one that sent me to the 2nd specialist. I will revisit with him on this, but I guess then I will not be too concerned. Thank you again for your response.

Hollie

Hi Hollie, How did the televisit with the specialist turn out on Oct 6th? Did he have any more information for you about your platelet levels and symptoms?

It went well. He is having me see the original hematologist then I’ll see him. So every three months. Said he watches the ANC also. Hadn’t heard that before. So next blood work is 12/30 and we are still wait and watch

I too have been diagnosed with MDS. I was actually donating platelets before 2021. In June 2021 I had a heart attack and triple bypass surgery. My platelets, red blood cells and white blood cells all dropped after the surgery. Since then my red and white blood cells have been within a low normal range. Unfortunately, my platelet count is hovering at about 70. My hematologist/oncologist is having me get blood tests every 3-4 months. I have had a bone marrow biopsy and he tells me I will need another one. I am told they have done every test available to me. They said it is not genetic...that test was done too.

About one month ago, my kid brother (66) had a heart attack and 4 bypasses. He waited too long to go to the doctor. He is still in rehab. Lucky to be alive. He is also struggling with low platelets and an MDS diagnosis.

I was told MDS was an uncommon condition. Is it more common than I was led to believe? I have heard from two friends that they also have been diagnosed with MDS. Why are we not hearing more about this from the medical community? I am trying to learn as much as I can.

My hemo/oncol said platelet counts can vary from morning to night ?why? Of course inflammation or infections can affect our blood, but seems for most part still a mystery

Good morning, Bonnie, and welcome to Connect. My goodness, you and your brother have both had some serious medical drama recently! I’m glad you’re both doing well after the heart attacks…but now you’ve both been diagnosed with MDS.
Myelodysplastic Syndromes (MDS) is a condition where a defect in the bone marrow is causing blood cells (red, white or platelets) to not properly develop. They can appear abnormal, or dysplastic. Sometimes this miss-firing stems from an acquired gene or there are cases where it can be familial.
While it’s not common, the condition isn’t rare either. I think the reason we’re hearing more about blood conditions such MDS is our ability to share information on the internet. It’s not a newly discovered condition that the medical community is hiding from us. And now that you have been diagnosed you’re also more alert with the mention of MDS. I had AML and until I was diagnosed 5 years ago it wasn’t on my radar at all. Now I’m very attuned to AML, MDS and other blood cancers.

To help you understand a little more about what MDS is, here are a couple of informational articles for you:

MDS from healthline.com
https://www.healthline.com/health/cancer/mds-hematology
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From Mayo Clinic
https://www.mayoclinic.org/diseases-conditions/myelodysplastic-syndrome/symptoms-causes/syc-20366977

After reading through all the articles I’m sure you’re going to have a lot of questions and I’ll be honest, some of the information can sound frighting. MDS can be potentially serious. However, your hematologist is following you closely with blood work which will help them watch for any changes or progression in the disease.

Since this is all new for you, it often helps to speak to others who have the same medical condition. That’s what makes Connect so special. We’re all here for each other. I’d to connect you with other members who have MDS and a good place to start would be this discussion:

Living with MDS (with @momz @nbadry @rrivory @honeymae
https://connect.mayoclinic.org/discussion/living-with-mds/
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Myelodysplastic syndromes (MDS): When do you need to start treatment?
https://connect.mayoclinic.org/discussion/mds-2/

Has your hematologist oncologist talked about possible treatments in the future?

they turn over fast like in a week...

Good morning Bonnie. I too have MDS. I was diagnosed last year, but believe I have had it since 2020. MDS is indeed rare. You can find the facts at MDS-foundation.org ( https://www.mds-foundation.org/what-is-mds/ ) The foundation is focused on the disease and you can find tools there to calculate your risk, which you need to know.

I do not see how you and your brother can not be genetically linked. Have you both updated your DRs with the info? I don't know anyone else living with MDS. You know so many people with the same disease. Did you all grow up in the same area. Some experts think exposure to Benzene may cause our disease.

I am exploring chemical exposure. I was stationed at at least 3 bases where I was likely exposed to chemicals. I may never know, but do to the rarity of the disease I think it possible.

My husband also has mDS. He was considered mild but his levels are very low(platelets 24) and his rbc hovers around 8, when it gets to 7.6 he gets a transfusion. His doctor called it a blood disorder that can become leukemia. I’m surprised at how many people you know that also are diagnosed with it. Is it becoming more commonplace and what is causing the uptick? I sure wish I had the answers. The doctor is recommending another biopsy of the bone marrow. Best of luck to you.
Kathyt