Low Platelets: Diagnosis to be confirmed

cathy07
This was my first post also (oan10429)
I don't know what has caused my ITP.
Remember, NO one has to feel low tech. Read the internet from good sites (Mayo Clinic, John Hopkins, Cleveland Clinic) Lots of information. I don't know your husband's conditions are but there is lots of help out there. Be as patient as you can. My wife is so compassionate. Be as understanding as you can. If I understand your comments right you have ITP too. Again, patience, understanding, compassion......hopefully you get doctors who are compassionate too and listens to your concerns. We are also not alone. WE will get help

I have been researching everything I can get my hands on.
We wont have a definitive conclusion until the bone marrow culture comes back in another w
week.
God Bless you

I’m waiting to get a diagnosis for the last 2 years I’ve been having a hemoglobin issue & low red blood count & low oxygen. The beginning of the year I fainted & my teeth went threw my mouth. I’ve been having kidney stones & surgery. The first ER missed it. I had sepsis & my blood pressure just drops. They had me on wrong meds & I got sepsis again in a week but this time was put on correct antibiotics & Kidney stone was found blocking severely infected kidney. This week I ho to ER due to pain in kidney & infection & stones again. Bloodwork came back with low red & white count low oxygen & liver count high. I also have pain in hands feet, knees & hips. Trouble breathing & sick to stomach & rash on face. How to I get a Dr to listen & help me???

Hello, @rbsunshine. My goodness, you’ve been through the wringer with all of these symptoms and no diagnosis. Having consistently low red blood counts and low oxygen along with fainting tend to be signs of anemia or possible other blood conditions.

Sepsis is quite dangerous so it’s a relief to hear you’re on the right antibiotics this time. But with your kidney issues, elevated liver enzyme numbers, low blood counts and other symptoms, it’s difficult to understand how you’re not getting any followup care.

Usually when a patient is released from the ER they are instructed to see their primary care physician within a week of discharge. Do you have another appointment scheduled?
What has your primary doctor said about your low red blood count?

@rocketman
I just read your post regarding ITP. I realize it was from Oct 2022, but was wondering what your results have been since then. My husband has ITP. He was hospitalized when his blood test gave a platelet count of 1 (one.) Hosp released him when they got count up to 152, but it continued to drop again. He also took the 4 infusions of Rituximab. 3 wks ago it was 36, this wk platelets are 46. He'll continue with blood tests, but his next oncologist apptmt is not until Oct 2023, unless count drops more. This is nerve-racking, to say the least.

auntkk
I have since been diagnosed with Aplastic Anemia and have been treated with ATZ , cyclosporine and Promacta.
(Treatment started February 1-5, 2023) All my blood levels crashed shortly after being told I had ITP only.
The treatment appears to be working after receiving the ATZ, Cyclosporine and Promacta.
After 9 weeks my blood count levels started to raise. My blood test results are starting to go into the normal range with Platelets rising from 12k 3 weeks ago to 87K, WBC from 1.8 TO 5.3, hemoglobin from 7.4 to 10.8, RBC from 2.1 to 2.8, neutrophils from 0.3 to 3.18. Hoping for continued improvement.
You are your best advocate for your health, find a competent Dr. I went through 3 Dr's before I even got a diagnosis. I would not wait 5-6 months for another blood test. It only took 2 months for my blood cell levels to tumble below normal.
In November I was given Rituximab, Prednisone and Promacta but there was no change in my blood cells or Platelet levels. Platelet transfusions only last 3-4 days. Platelet levels below 10 are critical and below 5 can be fatal if you get a brain bleed. You need weekly blood tests (CBC) to monitor Platelet levels and blood cell levels.
You need a definite diagnosis. I had two bone marrow aspirations and bone biopsies. It took the right Dr to determine my diagnosis.
My current Dr is exceptional, but I had to keep searching till I found a Dr with the knowledge I needed to find my diagnosis. She was at Mayo but is now at Moffitt in Tampa.
Good Luck, best wishes for a recovery and treatment.

Hello auntkk,
I have TTP and believe it differs from ITP. When my platelets drop it is because my body stops making platelets due to an enzyme shutting down . The enzyme is AdamsT13 that completely shuts down and it is like my body attacks itself not producing platelets. My first episode was in 2009, I have reoccurring TPP since I have had 5 (2009,2014,2016,2018,2022)total episodes. The first time my platelets dropped to 6,000. I was treated with Rituximab x4 and prednisone the first 4 episodes. The Drs usually test for my level of AdamsT13. I also have Plasma Pharisees (frozen plasma exchange) daily while in the hospital. My first hospital stay was 18 days due to platelets up and down. The second time I was hospitalized about 2weeks total after sending me home after a week of treatments I relapsed. The last 3x it has only been about a week stay. This past December I was not treated with Rituxin due to high incident of death related to COVID concerns for being unvaccinated. After the week in the hospital I’ve still continued to have platelets in the 200,000 range. I have been told TTP is usually a one and done thing! Prayers answered🙏 Hope this is helpful. Blessings always, Lou Ann

Oh, I pray that you're problem is "one & done" for sure! Thanks for that info. These blood problems are new to us, but I read what I can to learn about it. My husband has always been pretty healthy with the exception of knee replacements & an episode of melanoma on a mole on his arm, where he had Mohs surgery to remove it. Per the doctors, this ITP came a few months after covid at the end of Dec 2022. Believe me, we had no idea that his platelets were at 1,000 until the PCP dr called to tell him to get to ER immediately. We pray this clears up & goes back to normal so he won't have to take major meds.
Thank you for responding back to me. God bless & trust that you get totally healthy.

@rocketman
Thanks for your info. Other than my husband's platelets, all the other blood test results have always remained normal. Due to shortness of breath & fatigue he had a stress test this week & thank God, his test result is good. He'll get another blood workup on the 25th, then monthly if this one is better than 46. We're believing he'll continue to improve, & of course, we'll move ahead if necessary.
Thanks for listening to me! I keep digging for info!

Good morning auntkk,
I remember the Dr”s call to go to the ER! I hope your husband has gotten some answers. I’ll pray that COVID has not caused any continual complications and that these low platelets issue is resolved quickly. God bless!