January 2026 Health Updates

Hi friends! I feel like there is SO much going on with my health right now, and writing really helps me for some reason. I also think it's helpful for people who are going through similar struggles, as when I read other people's health journeys, I feel less alone.

Disclaimer: I do vent a lot at the end of this post, FYI.

Previous Health Updates:

• A little bit of a life/health update from me (5 min read)

• Another little health update from me post-haemotology appointment (3 min read)

• More health updates from me because this situation is never-ending (3 min read)

• My Gastroscopy + Colonoscopy Experiences (7 min read)

PIN IT

PIN IT

January 2026 Health Updates (from Ash)

TLDR: still no real certainty as to what's wrong, IBD has been ruled out, the blood disorder ET is still likely, but we won't do a biopsy right now, and discussion regarding the POTS physio sessions.

I don't even know where to start with this one tbh.

Since my last little update, I had my procedure to check for IBD/Crohn's, and my colonoscopy/gastroscopy was mostly clear. The doctors found a little bit of inflammation, but they think this was caused by the bowel prep. I have an ultrasound booked in for February to check the small bowel to completely rule out IBD, so we don't think that's the cause of my health issues or crazy blood markers. The gastro said that often IBS is linked to things like dysautonomia (which, we'll discuss soon).

Regarding my haematologist and the specific blood markers (high platelets, high white cells, high red cells, high CRP - inflammation), I had a really nice experience with him for my last appointment, where he was super clear and concise in what he was telling me. And as many of you know, I've had a bit of a bad experience with him in the past, as he came across as a bit misogynistic. Anyway, the haematologist said I didn't have any genetic markers/mutation for thalassemia, but that doesn't rule it out completely. He also still suspects the essential thrombocythemia blood disorder (ET, sometimes people just say essential thrombosis), as my platelets are very high, and you can have this without a genetic mutation - i.e., triple negative. The plan is basically the same, which is to "watch and wait" to see if my platelets continue to go up, so we monitor all my blood tests whenever I do my iron level checks. If and when the platelets get higher, that's when we do the bone marrow biopsy, as it will give us a clearer picture of what's going on. If I do have ET, my platelets will likely continue to remain elevated and slowly go up. It would also explain some of the weird symptoms I get, like itching after showering, tingling in my hands and feet, nosebleeds, and fatigue. They do treat ET with aspirin because it's a blood thinner, but there isn't much point in trialling that out just in case there is something else going on. So it's just more uncertainty and waiting. It's very interesting when your own body becomes a research project.

In regards to the POTS/dysautonomia specialists, I still have an appointment with the doctor at the end of this year (where I think they give me a holter monitor for a few days and do tilt table tests and whatnot) but I've also been put into the dysautonomia physio programme where I see a physio for 8 sessions to to help with lifestyle modifications and safely exercising and building up tolerance. I have just been saying "POTS physio" because it's much easier to say than "cardiovascular and autonomic dysfunction". Anyway, I've had one appointment with the physio, and I am feeling a bit off about the situation. Most of the appointment time was taken up with a discussion of my symptoms, past medical history, past trauma history, and a lot of talk about me having a binge eating disorder because of my weight gain. I don't have an eating disorder - I actually think I have a relatively healthy relationship with food and tend to follow intuitive eating, not that I need to explain myself. I was also told that my GP didn't put on my referral that I have a slipped disc in my back, so she didn't believe me when I said I had that. I've also just checked the referral, and it clearly says "disc herniation," which is a slipped disc. 90% of the appointment was helpful as the physio was explaining why I find walking easier than standing still & why my body goes into adrenaline dumping, but at the end of the appointment, I did a few tests, and I felt uncomfortable.

These tests included a hypermobility test to check for EDS (the physio said I may have some hypermobility in my knees, but since she's not a doctor, she couldn't diagnose me). We then conducted a stand test to assess for POTS, and this is where the energy in the room shifted. The physio got me to lie down in the dark for 5 minutes to get a baseline heart rate and blood pressure, then I was to stand. I was told that if I felt dizzy at anytime during the stand part, to sit down immediately. I couldn't get through the test because I felt SO dizzy and nauseous, so I sat down. My heart rate only went up by 20 (for a POTS diagnosis, it's meant to go up by 30 BPM), but my blood pressure went up - and the physio was very focused on that. I've had my blood pressure checked a lot, and the only times it's ever been high are when I'm uncomfortable in a medical setting (i.e., white coat syndrome). Anyway, the physio was adamant that my GP needs to put me on blood pressure meds after one test. That made me feel weird. She also told me I wasn't drinking enough water (I drink so much water) and that I have to take specific electrolytes without glucose in them - they are disgusting. She also doesn't think adding salt will help me (I think because she's worried about BP, but I do find whenever I have a salty meal, I feel a lot better the next day).

I also tried to show the physio my heart rate changes on my app from my smartwatch, and she got annoyed at me and said, "Those are for healthy people, not you". Even though it clearly shows what I'm doing and where my heart rate goes up (i.e., when walking Benji this morning, it got to 140). In the end, the plan was for me to drink 3 L of water a day, add in these weird electrolytes, use a different app on my phone, and keep an energy expenditure diary. I'm happy to do that, but I bawled my eyes out driving home from the clinic. I felt a bit of imposter syndrome, and I don't know for sure if the physio was thinking this, but it did feel like she thought I was wasting her time.

I don't know if the physio realised that I was feeling uncomfortable at the end of our session and it's not like I can see a different specialist, as that's the only clinic that looks after this sort of stuff, so it'll be interesting to see what happens in the next session. I'm hoping that I'll feel more comfortable as time goes on, or I can figure out what she can do to make me feel more at ease.

I also learned a few things about the causes of dysautonomia and POTS, which can be things like past trauma, other undiagnosed health issues, GI issues - e.g, IBS/IBD, having a Type A personality, viruses like COVID-19, sleep issues, being female, past surgeries, and so many other factors - many of which I fit into.

That's really all there is right now. Hopefully, there's someone out there reading my story who feels a little less alone in theirs.

Thank you for reading xoxo

Ash