Health Update - Month 15
Posted by Mira on June 8, 2026 in stories
This month, my platelet count had significant drops, despite feeling great. I did a lot of research and found the root cause and made a decision to adjust my Doptelet dosage accordingly. Throughout the process, I learned a ton!
Contents
- How I Feel
- Body Weight
- Gym Performance
- Sleep
- Heart Rate (Resting Heart Rate & HRV)
- Skin
- Menstrual Cycle
- Autoimmune Update
- Learnings
- Next Steps
How I Feel
Overall I feel great — physically, emotionally, and mentally. I have no pain, no bruise, no nothing during my travel overseas right now, which has been a blessing. Especially I was climbing stairs, walking miles a day, and lifting my heavy suitcase. Everything has been fine.
In Texas, as we headed into higher UV days before the trip, I started to notice photosensitivity again — a stingy, aching feeling around the joints (knees, fingers). I felt the same thing on a sunny day in Barcelona. It's a small deal. I don't avoid the sun at all.
Body Weight
I continue to lose weight cycle by cycle — about 4 lbs over the last two cycles.
I'm still doing what worked in Month 14: cycle-based fasting, no snacks, eating until 80% full, prioritizing protein and fiber first, staying relaxed, no heavy workouts, and sleeping 8 hours.
Body Weight - Previous Cycle (Apr 14 – May 9) · -1.0 lb
Body Weight - Current Cycle (May 9 – Jun 1) · -3.6 lb
Interestingly, I noticed that eating more rice stalled and even slightly increased my weight — something I didn't observe with other carbs.
My current weight is at a point where I was right after high school if I recall correctly. Since my puberty, my weight had never been optimal, as I knew nothing about nutrition.
Gym Performance
I'm keeping my twice-a-week workout schedule (except during my period, when I switch to light walking only). It has been great.
While in Barcelona without gym access, I did push-ups and leg workouts in the room. Convenient and enough to stimulate the muscles.
Sleep
Sleep has been generally good this month. On Day 10 of one of the cycles, I had one poor night — I couldn't get into deep sleep and woke up frequently. Otherwise, sleep has been consistent.
When I tried to figure out the root cause, it turned out I did not eat enough before sleep. Then I ate a big breakfast the following morning and planned to have 3 solid meals for that day, and my sleep was back to normal.
I usually fast harder before ovulation, but this time I think my physical schedule is a bit ahead, as I see I am already getting water weight for 2 days. That means my body is ready to ovulate and then a big water drop whoosh.
Be gentle with your body and fast more lightly around ovulation.
Heart Rate (Resting Heart Rate & HRV)
My resting heart rate averaged 57 BPM in May, and HRV averaged 36 ms — very similar to last month. Both numbers remain stable with no major swings.
Resting Heart Rate — avg 57 BPM (May 2026)
Heart Rate Variability — avg 36 ms (May 2026)
Skin
No major skin issues this month — just a small pimple near my mouth. It was gone within a week.
While I'm in Barcelona, I have another small pimple on the left side of my mouth.
Clearly I'm getting pimples, not much, since I added more vegetables in my diet.
Menstrual Cycle
I had two interesting menstrual cycles this month, and I will detail in the ITP section below.
Autoimmune Update
ITP
This month was eventful — a heavy bleed, two blood draws, and a dosage change. I learned a lot.
Bleeding Episode
After reducing the dosage to 60mg every 14 days, I had a heavy bleeding episode:
- Days 1–2 — okay
- Day 3 — bleeding got heavier
- Day 4 — passed a large clot; was close to taking TXA, but put the pills back, talked myself through it, and waited. It stopped within an hour. Pretty amazing.
During the bleeding period I also felt fatigue, a slight knee numbness, and some inflammation-like feeling around the knees. Sleep was worse than usual.
Blood Draws
I did 2 blood draws this month.
| Date | Platelet Count | Notes |
|---|---|---|
| May 14 | 30k | Confirmed dosage too low; immediately up-dosed to 20mg every 3 days |
| May 21 | 30k | Still low — likely takes time to rebuild the reserve |
These blood results were not great, which made me a little anxious because of the upcoming travel. I heard people with low platelets could have problems with flying, such as bruising due to cabin pressure changes. But I also heard there are 2 kinds of people with ITP: easy bleeders and not. I don't think I'm an easy bleeder.
I have a theory that people who have ITP and other metabolic health problems, such as high blood pressure, are more prone to bleeding.
This is why now I see health is holistic. It is not just about weight, or a specific symptom, it is about how all systems in the body work together.
Barcelona Period
After arriving in Barcelona, I had another menstrual period. It was manageable:
- Day 1 — light
- Day 2 — medium
- Day 3 — medium; passed a clot in the morning (worried it might escalate, but it didn't — became very light by late morning)
- Day 4 — very light
I had originally planned a blood draw once settled in Barcelona but didn't get the chance to. The manageable period suggests my platelet count had recovered above 30k, but the one-time clot indicates it may not have reached 50k yet.
Up-Dose Decision
I increased the dosage to 20mg every 3 days and will hold it for a longer period to observe the effect.
The reason I moved back to this level is that this was previously the dose at which I had no heavy menstrual bleeding — making it a safer baseline. I'm traveling without my regular doctor's care, and I want a level that is both safe and able to handle some stress (menstrual period, exhaustion, or viral infection).
Theoretical effect of increasing from 60mg every 14 days to 20mg every 3 days:
| Time Period | Estimated Platelet Range |
|---|---|
| May 2026 | ~30k (exposed floor) |
| Late May 2026 | 40–60k |
| June 2026 | 50–90k |
| July 2026 | 70–110k |
| Aug onward | 70–120k (stable band) |
Overall, even though I experienced heavy bleeding towards the end of dosage reduction, I don't see this as a negative. It was an important data point for understanding the minimum Doptelet dose I need to reach.
Platelet Destruction Strength — Extrapolation Model
I asked an AI to create a visualization for my platelet destruction strength over time given my medical history. Here is what it came up with:
Dec 2024 ██████████ 10
Jan 2025 █████████ 9
Feb 2025 ████████ 8
Mar 2025 ███████ 7
Apr 2025 ██████ 6
May 2025 █████ 5
Jun 2025 █████ 5
Jul 2025 █████ 5
Aug 2025 ████▌ 4.5
Sep 2025 ████ 4
Oct 2025 ████ 4
Nov 2025 ████ 4
Dec 2025 ████ 4
Jan 2026 ████ 4
Feb 2026 ████ 4
Mar 2026 ████▌ 4.5
Apr 2026 ████▌ 4.5
May 2026 █████ 5
Ideally, I want to see the curve go down little by little. Now with my platelet count going down, it does not mean the platelet destruction gets stronger, it just means it is under the support.
Again, the up-dose is not a failure, but a test of boundary.
Long Term plan
Even though I reversed the direction and started to up-dose, this down-dose experience was so valuable. I learned so much about my platelet system.
At this moment, based on what I know, my goal is to keep the dosage at 20mg every 3 days for the foreseeable future, keep my platelet count stable at a safe level (above 50k), wait for my B-cells to renew and quiet down my immune system. Theoretically, I should see my platelet count go higher little by little, if God is willing, back to normal range.
Lupus
I still feel photosensitive — the inflammation around joints, that stingy feeling on a sunny day. I didn't actively avoid the sun. This may be something I need to live with the rest of my life. It kind of bums me out, but you know what, it is okay. I do not allow myself to live in fear in a dungeon.
This June also marks the 1-year anniversary of stopping HCQ. I was so proud of myself having the courage to stop the medication, and let my body heal itself.
The immediate benefits after stopping HCQ were
- my heart rate dropped from 70s and 60s
- my platelet count jumped
I would have never known these outcomes if I still blindly followed doctor's advice to take HCQ. I would have never know that HCQ was another factor that suppressed my platelet count.
Now my take is I know my body, I can feel my body, and I trust my body. My body will not be destroyed overnight. I do the right things for my body, and let God take care of the rest, not the doctors.
Learnings
The Platelet System Is a Threshold-Buffer System
This month I was a little shocked to see my platelet count drop to 30k after spacing out my Doptelet doses.
For a long time, I thought I could continue lowering the dose and eventually discover my "true" platelet level. But what I've learned is that my platelet system behaves more like a threshold-buffer system than a linear one. The lower the dose gets, the more sensitive my platelet count becomes to even small dosage changes.
A simplified way to think about it:
Available platelets = platelets produced by bone marrow − platelets destroyed by the immune system
Compared to last year, my platelet counts have been much more stable overall. That suggests immune destruction is likely less aggressive than during the acute phase of ITP — though it has probably not disappeared completely.
As I tapered Doptelet to very low levels, the medication's stimulation of platelet production also decreased. At higher platelet reserves, small dose reductions had little visible effect. But near my current threshold, even modest changes can have outsized impact — because there is less buffer in the system.
What surprised me is that the relationship does not appear linear. A small reduction in support can sometimes cause a much larger drop than expected. Once platelet production falls below a certain level, the equilibrium between production and destruction may become unstable, settling into a new, much lower equilibrium.
In that sense, the drop to 30k doesn't necessarily mean my disease is worsening. A more likely explanation is that I crossed below the level of support my body currently needs to maintain a comfortable reserve. By reducing the dose too far, I may have disrupted a previously stable equilibrium and exposed the true sensitivity of the system near its threshold.
The goal now is not to chase the highest platelet count possible, but to find the lowest level of support that keeps the system stable. If the current dose increase restores that reserve, the platelet count should gradually move back into a more stable range over the coming weeks — suggesting the underlying system remains improved compared with last year, but still requires some support to stay balanced.
Brain Body Connection
Like I mentioned above, I started to self-talk and listen to worship music and my heavy bleeding stopped itself. It was amazing experience and it was confirmed by science:
Expectations and positive self-talk can drive real physiological changes via brain-body pathways, including neurotransmitter release and stress reduction that support healing responses.
My theory has always been: The fact that there is such a thing as the placebo effect tells you that, your mind can talk to your cells.
Next Steps
ITP & Medication
- [New] Hold Doptelet at 20mg every 3 days throughout travel, monitor effect
- Continue avoiding gluten for now (!!!) until platelet count is back to normal range
Menstrual Cycle
- [New] Avoid fasting around ovulation, before my period
- Avoid stressful workouts before and during my period
- Get blood test done around ovulation to get the most accurate lipid panel
- Continue using organic cloth menstrual pads
Diet & Nutrition
- Have meals fit into the fasting schedule
- Increase fiber to feel full
- Keep pork intake low; focus on beef, fish, lamb, and eggs
- Continue eating complex carbs, vegetables, fruits, and nuts
- Continue avoiding screens while eating
Exercise & Fitness
- Keep strength training at 2x/week
- Strength training focus on pliability and flexibility
- Focus on body comfort over stats
General Health & Monitoring
- Monitor low heart rate and HRV
- Rinse the mouth after coffee and brush lightly, to prevent staining
- Eat clean, sleep well, and get regular sun exposure
