Healing ITP: My Path to Understanding and Recovery
Posted by Mira on April 30, 2025 in stories
Immune Thrombocytopenia (ITP) is an autoimmune condition that causes your platelet count to drop, sometimes dangerously low. Before I was diagnosed, I had never even heard of it. When I finally was, I realized how wild and unpredictable this disease can be. It throws your life into a swirl—full of ups and downs like a rollercoaster. Because ITP is rare, it can feel isolating. Sometimes it seems like no one really understands what you're going through.
I'm writing my story in case you’ve stumbled across this post looking for answers, encouragement, or simply someone who gets it. Maybe what I’ve learned so far can help you in some way.
(At the time of writing, my ITP isn’t cured—or, as doctors would say, not in remission yet. But I’m still on the journey, still learning, and I hope one day I’ll be able to update this paragraph with good news.)
Contents
When It All Started
August 2024
In August 2024, my family and I returned to the United States after visiting 10 countries across Europe and Asia. We felt healthy and full of energy—after all, we were still young. That’s why we decided to take on such an adventurous trip.
Shortly after we returned, my menstrual period began, but this time it was different. I started passing large blood clots—something I hadn’t experienced before. I’d had smaller clots in the past, but this felt unusual. I assumed the clots would stop, but they didn’t. As the days went on, I began feeling more and more exhausted. Eventually, I decided to see my family doctor.
My doctor prescribed tranexamic acid (TXA) to help stop the bleeding, and it worked. I thought it was just a one-time issue, something that would pass. However, I continued to feel incredibly tired, so I took a few weeks to rest and recover. At the time, I didn’t realize it, but I was severely anemic due to the blood loss. It was only later that I understood the extent of what was happening.
Octorber 2024
My menstrual period became heavy again, and this time, it was unbearable. I could barely leave the house—every hour, my pad would be soaked, and I had to change my clothes because the blood would stain everything. I continued taking the tranexamic acid (TXA), but it took a long time to show any effect. Eventually, the bleeding stopped.
But one morning, I woke up feeling utterly drained. My husband found me barely able to speak and rushed me to urgent care. There, we learned that my hemoglobin had dropped to 8 — dangerously low. They immediately sent me to the ER for an emergency blood transfusion. That was the moment I truly understood the severity of my anemia, which was caused by heavy blood loss.
When I asked the doctor at urgent care what might be causing the bleeding, she just shrugged and suggested it could be perimenopause. Perimenopause — yet another new term I now had to research.
In early October, I had my annual exam and blood test. My doctor briefly mentioned that my platelet count was low—around 20k (normal range is between 150k and 400k)—but didn’t seem overly concerned about it. Unfortunately, I didn’t fully grasp the significance of this at the time, and I didn’t think to ask more questions.
At that point, neither my doctor nor I connected the dots between my low platelet count and the heavy bleeding. My doctor referred me to an obstetrician/gynecologist (OB/GYN) to look into potential issues with my uterus.
He also prescribed ferrous sulfate to help boost my hemoglobin, and asked me to recheck hemoglobin in 2 months.
November 2024
The OB/GYN appointment had a long waitlist, so I wasn’t able to see anyone right away. My visit was scheduled for December, which meant I had to get through another cycle without knowing what was going on.
In November, my menstrual bleeding was once again extremely heavy. I relied on TXA to help manage it, but just like before, it took a long time to work. I felt helpless, stuck in a cycle I couldn’t control, still unaware that something deeper—like my platelet count—might be playing a role.
December 2024
I finally saw the OB/GYN in December. After an ultrasound and a thorough check, the doctor told me there was nothing structurally wrong with my uterus. But she offered several options to control the heavy menstrual bleeding: birth control pills, an IUD, or even a hysterectomy.
I was surprised. These were all interventions I had avoided my whole life—I’d always preferred a more natural approach. The idea of removing an entire organ to stop bleeding felt drastic to me.
Curious and a bit unsettled, I started doing my own research and talked to a few relatives. To my shock, I discovered just how common hysterectomies were. Many women saw it as a routine solution. It felt almost normalized, like cutting out the uterus was just another medical option—no big deal. But to me, it was a big deal.
After taking ferrous sulfate for two months, I went back to my family doctor to check my hemoglobin levels. When the results came in, he told me everything looked good—my hemoglobin was back to normal. He didn’t mention anything about my platelet count, even though hemoglobin and platelets are reported together in the same Complete Blood Count (CBC) panel.
Later, my husband looked over the results and asked, “Why is your platelet count 16k?” I had no idea what that meant, so I called my doctor. He told me the lab had flagged the result as “clumped,” meaning the platelets might have stuck together and given a false reading. He asked me to repeat the test. I also asked him whether the low platelet count was causing my heavy menstrual bleeding, and he adamantly said no.
I went in for another blood draw. Then, at around 3 a.m., I got a call from the clinic’s on-call doctor. She said she had been paged because my new lab result showed my platelet count was 13—alarmingly low. It was low enough to trigger an emergency alert. She warned me to be extremely careful and told me to go to the ER if I experienced any bleeding or bruising.
After hearing the news, I was terrified. I woke up my husband in a panic and told him we needed to go to the ER immediately.
At the ER—for the second time that year—I didn’t stay long. The doctors diagnosed me with Immune Thrombocytopenia (ITP) and prescribed a high dose of dexamethasone for four days before sending me home. At the time, I thought ITP was just a simple condition, something that could be fixed quickly.
What I didn’t realize was that dexamethasone is a powerful steroid meant to shut down the immune system—its purpose was to stop my body from attacking my own platelets. No one explained that clearly to me, and everything felt so new, so overwhelming. I had no idea this was the beginning of a long and uncertain journey.
They told me to follow up with a hematologist in a few days. I left the ER with a prescription in hand, thinking I’d be better in no time. I was wrong.
Surprisingly, while I was on dexamethasone, my period came—and for the first time in months, it was normal. No heavy bleeding, no large clots. It was an eye-opening moment. I realized my family doctor had missed something important: my heavy menstrual bleeding wasn’t just a gynecological issue—it was directly linked to my low platelet count. He hadn’t caught the warning signs. When platelets are low, your blood can’t clot properly, and that explained everything I had been going through.
January 2025
January 2025 was a rollercoaster. I was on high-dose dexamethasone twice, each time for four days. After each round, my platelet count rose to around 70k — which was encouraging — but then it would drop back down to around 20k. It felt like a constant battle, and I was terrified.
My hematologist dismissed my questions about what could be causing this illness, so I started doing my own research. I bought books, including The Immune System Recovery Plan by Susan Blum and Metabolical by Dr. Robert Lustig. I began learning that there are many types of autoimmune diseases — and ITP is just one of them. A common trigger for autoimmune diseases, I discovered, is leaky gut.
From The Immune System Recovery Plan and some YouTube videos, I also learned that vitamin D deficiency is often linked to autoimmune conditions. I asked my hematologist to check my levels — and sure enough, my vitamin D was extremely low at just 13 ng/mL. The doctor prescribed vitamin D3, 50k IU per week for two months. However, that dose was too high for me, and I couldn’t sleep. I switched to a daily dose of vitamin D3 with K2, 5k IU per day.
My hematologist also found that my ANA marker was elevated and suspected that I might have lupus, which could be the underlying cause of my ITP. He referred me to a rheumatologist for confirmation. When I saw the rheumatologist, he confirmed the elevated ANA and diagnosed me with lupus. It was another shock — and a wave of panic. Before this, I had no idea what lupus was. After just a few Google searches, I quickly realized that lupus is another serious autoimmune condition and many people have to live with it for the rest of their lives.
I hit the bottom of my life in january. The fear of these new diagnoses scared me that I could not think of any other things. It was surely the darkest moment of my life. One moment i was healthy and traveling around the world, and the next moment I was bedridden with a life-threatening illness.
February 2025
March 2025
Someone from an ITP Facebook group suggested that I get tested for an H. pylori infection, which is often linked to ITP. I did some research and found that connection confirmed. I took a breath test, and it came back positive. The GI doctor immediately prescribed antibiotics to clear the infection, and I took them for 14 days.
During this time, my platelet count dropped to 40k. My hematologist increased my dose of Doptelet to 40mg per day. But my platelets didn’t bounce back to the 80k level they had maintained before the antibiotics.
He suggested IVIG again to quickly boost my platelets. But I refused. I wanted to wait and see what my body would do once the antibiotics were out of my system.
April 2025
The antibiotics were finished by early April, and by the end of the month, I took a stool test that confirmed the H. pylori infection had been cleared.
My platelet count began to improve, and my hematologist reduced my Doptelet dosage to 20 mg per day. At this point, I was eager to see if my platelet count would continue to improve with the lower dose (20 mg).
I also followed up with my rheumatologist. Through a blood test, he confirmed that my lupus was improving, but it was hard to determine whether my immune system was improving on its own or if it was the effect of the HCQ.
May 2025
The platelet has been steadily improving in May. When the Doptelet dosage was reduced to 20mg per day from 20mg/40mg on alternate days, my platelet count tanked quickly from 168k to 96k. My hematologist suggested I increase the dosage to 20mg/40mg on alternate days again, but I refused. I wanted to see if my platelet count would continue to improve with the lower dose (20 mg), and also wanted to compare the number with the numbers before the antibiotics when I was also on 20mg of Doptelet.
I'm glad that I followed my instincts and kept the dosage at 20mg per day. My platelet count has been steadily improving ever since.
My white blood cell count was also improving, from 2.9k to 5.5k, which is a healthy range.
June 2025
I was traveling overseas in June and maintained a strict diet—avoiding eating out, cooking at my Airbnb, and focusing on meat intake—while doing weekly blood draws. I had them done in Japan, outside of my home state. The results were good.
Starting June 11, I stopped taking HCQ. I suspected it was causing side effects such as muscle pain and, most notably, photosensitivity. I’ve heard that stopping HCQ can lead to lupus flare-ups, but I was willing to take the risk. I had no symptoms before the lupus diagnosis, aside from blood markers that resembled lupus. Ironically, after starting HCQ, I began experiencing symptoms—despite curing my H. pylori infection and maintaining a very clean diet.
On June 13, I received a great test result: my platelet count was 208k, which is the threshold for reducing my Doptelet dosage. I was so happy. I’ll reduce it to 20 mg, three times a week, and monitor whether my platelet count changes after this adjustment.
Diagnosis
On December 27, 2024, I sat in the hematologist’s office for my follow-up. My platelet count had risen to 78k— an encouraging sign that the high-dose dexamethasone had worked, at least temporarily.
I had hoped to explain how I ended up here: the travel, the exhaustion, the unexplained bleeding, the emergency room visits. But before I could say much, the hematologist handed me a single sheet of paper—my treatment plan. He didn’t seem interested in my story. He was focused only on the protocol.
The paper listed a step-by-step protocol: first-line treatment, second-line treatment, and if neither worked, the final option—splenectomy. Removal of the spleen.
I was stunned. Up until that moment, I still believed ITP was a minor, manageable issue. Now, I was reading about the possibility of permanently losing an organ. The gravity of it all hit me at once. This wasn’t going to be a quick fix. This was going to be a long road.
Treatment Journey
The healing journey has been long and often frustrating. While doctors focused on managing my condition with medications—possibly for the rest of my life—I couldn’t accept that as the only answer. I never stopped searching for the root cause of my illness. I don’t believe this happened because of bad luck or genetics alone. Something triggered it, and I was determined to find out what.
Vitamin D Deficiency
Starting in the new year, 2025, I began reading everything I could about ITP. I learned it was an autoimmune condition, so I dove into podcasts and books about the immune system. One thing kept coming up: Vitamin D deficiency is often linked to autoimmune diseases. I asked my hematologist to test my levels—and sure enough, my Vitamin D was extremely low, just 13 ng/mL.
I started digging into medical papers to see if there was a connection between Vitamin D and ITP. And yes, there was. I began supplementing with Vitamin D3 + K2, and within two months, my levels rose to a healthy 74 ng/mL. I noticed improvements in my energy and mood—but my platelets didn’t return to normal. So while Vitamin D deficiency may have played a role, it wasn’t the root cause of my ITP.
First Line Treatment (Dexamethasone and IVIG)
Dexamethasone is a corticosteroid that works by powerfully suppressing the immune system. It can rapidly boost platelet counts, which is why my hematologist prescribed it—four days at a time, at a high dose, twice. Both times, the pattern was the same: my platelet count would jump to 70k or 80k within days, only to crash back down below 20k shortly after.
My hematologist told me that for some patients, dexamethasone can be enough to restore platelet levels to normal. But for me, it didn’t stick. While I was on it, my face puffed up and turned red. When I stopped, I experienced a prickly pain all over my back. It was miserable. Every time, I told myself, I don’t want to take this again.
Alongside dexamethasone, my doctor also gave me IVIG—an infusion of antibodies designed to temporarily boost platelet levels. It’s a very expensive treatment. Honestly, I’m not even sure it worked for me. It always seemed like the dexamethasone did the heavy lifting.
Once, when my platelet count crashed to just 2k, I had to go to the ER for the third time. The doctors gave me another round of high-dose dexamethasone and IVIG together. It was another desperate attempt to bring my platelets back up.
Dexamethasone only works for a short period of time. It doesn't address the underlying cause of my ITP.
Second Line Treatment (Doptelet)
Doptelet is a tablet that stimulates the production of platelets in the bone marrow. My hematologist prescribed 20mg per day while I was in the hospital after my platelet count dropped below 2k. Since then, my platelet count has started to rise and stabilized around 80k.
For the first time in months, I was able to have a normal menstrual cycle—no heavy bleeding, no clots, no fear. I haven’t noticed any side effects from Doptelet. For me, this drug has been life-changing.
But I also know Doptelet is only treating the symptom—low platelet count. It doesn’t address the underlying cause of my ITP. And I’m still determined to find out what triggered it in the first place.
Preparing for Last Resort Treatment (Splenectomy)
My hematologist mentioned that if neither dexamethasone nor Doptelet worked, the final option would be a splenectomy—removal of the spleen. It would be the last resort. I understood that he was being cautious, wanting to prepare for the worst. He suggested I meet with a surgeon to discuss the procedure and begin getting the necessary vaccines.
Both the hematologist and the surgeon assured me the procedure itself is relatively straightforward. In most cases, removing the spleen leads to a rise in platelet count. But they also noted that patients with lupus tend to have less success with splenectomy, and they don’t fully understand why. Splenectomy also carries risks—most notably, a higher susceptibility to infections after the spleen is gone. That’s why my doctor insisted I receive all the required vaccinations beforehand.
Personally, I believe the spleen plays an important role in the immune system. It has a reason to be part of the body, and I don’t want to remove it unless it’s absolutely necessary. It is the last resort that I don't want to take.
Lupus Diagnosis
My hematologist ordered a panel of autoimmune marker tests, and the results came back positive for lupus. He referred me to a rheumatologist, suspecting that lupus might be the underlying cause of my ITP. I was stunned—one autoimmune disease felt like more than enough. Now I was facing the possibility of a second.
At the rheumatologist’s office, more blood work confirmed that I did, in fact, have a mild case of lupus. I had been experiencing occasional joint discomfort, but no flares from sunlight, and I’d never had the classic butterfly rash on my face. The rheumatologist prescribed hydroxychloroquine (HCQ), a medication commonly used to manage lupus. Since HCQ takes time to build up and take effect, I started it right away, hoping it might also help stabilize my platelet count.
Carnivore Diet
One weekend in February 2025, I made handmade noodles for two days, and over the next few days, my platelet count dropped to 2k. Sometimes my hands felt numb or tingly after eating. From reading books, I also learned that most autoimmune diseases are triggered by a leaky gut. I realized that food could be a major factor in my autoimmune condition. To control the food factor, I chose an extreme elimination diet — the carnivore diet — instead of trying to figure out which specific foods were triggering my condition.
H Pylori Infection
In one of the ITP Facebook groups I joined, patients shared their experiences, symptoms, and tips for managing medications. I connected with a woman who had been managing her ITP for years. We often chatted about Doptelet—how to take it, what to expect. Once my platelet count became stable on Doptelet, she suggested I look into Helicobacter pylori (H. pylori). She told me that many ITP patients had tested positive for this stomach bacteria.
I was skeptical at first—I had never had any gastrointestinal issues. But I made a mental note to ask for a test at my next GI appointment. Eventually, I took a breath test for H. pylori. And to my surprise, it came back positive.
Now I had another possible path to find the root cause of my ITP.
My GI doctor immediately prescribed Talicia, a combination antibiotic, to eradicate the H. pylori bacteria. I followed the treatment for 14 days. To my surprise—and my hematologist’s—my platelet count dropped to 40k during the course of antibiotics. Concerned, he increased my dose of Doptelet to 40mg per day. But my platelets didn’t bounce back to the 80k level they had maintained before the antibiotics.
He suggested IVIG again to quickly boost my platelets. But I refused. I wanted to wait and see what my body would do once the antibiotics were out of my system.
Then something unexpected happened: three days after I finished the antibiotics, my platelet count rose to 50k. A week later, it jumped to 126k. Two weeks later, it climbed to 236k.
Then I asked my hematologist to reduce my Doptelet dosage to 20 mg per day. My platelet count dropped to 96k over two weeks, then rose to 126k — higher than the 80s-level I had before starting the antibiotics, even when I was also on 20 mg of Doptelet. This was a very positive sign that treating H. pylori was helping my platelet count!
Platelet Counts Over Time
- 12/18/2024: 16 (Family doctor visit)
- 12/20/2024: 14 (Family doctor visit, recheck)
- 12/21/2024: 22 (ER visit)
- 12/27/2024: 78 (after 1st round of Dexamethasone)
- 01/02/2025: 14
- 01/08/2025: 82 (after 2nd round of Dexamethasone)
- 01/17/2025: 42
- 01/20/2025: 33
- 01/27/2025: 32
- 02/03/2025: 13
- 02/10/2025: 48 (after 3rd round of Dexamethasone and IVIG)
- 02/14/2025: 2 (hospitalized)
- 02/15/2025: 22 (on Dexamethasone, IVIG and Doptelet 20mg)
- 02/16/2025: 44 (on Dexamethasone and Doptelet 20mg)
- 02/17/2025: 99 (on Dexamethasone and Doptelet 20mg)
- 02/20/2025: 136 (continue Doptelet 20mg from now on)
- 02/24/2025: 112
- 02/27/2025: 81
- 03/03/2025: 93
- 03/06/2025: 80
- 03/10/2025: 73
- 03/17/2025: 89
- 03/24/2025: 49 (after starting antibiotics for H. pylori)
- 03/27/2025: 77 (increasing Doptelet to 40mg/20mg on alternate days)
- 03/31/2025: 40 (increasing Doptelet to 40mg every day)
- 04/03/2025: 37
- 04/07/2025: 47 (after finishing antibiotics for H. pylori)
- 04/11/2025: 126
- 04/17/2025: 236 (reducing Doptelet to 40mg/20mg on alternate days)
- 04/24/2025: 214 (reducing Doptelet to 20mg every day)
- 05/01/2025: 168
- 05/07/2025: 96
- 05/15/2025: 123
- 05/23/2025: 138
- 05/30/2025: 126
- 06/06/2025: 148
- 06/13/2025: 208 (stopped HCQ 2 days ago)
- 06/19/2025: 182
- 06/29/2025: 132
(to be continued...)
