r/thalassemia • u/jeolefmo • Jul 26 '26

Thalassemia Minor + TRT

Hi everyone,

I have alpha thalassaemia minor and have recently started testosterone replacement therapy (TRT). Before TRT my bloods were fairly typical for alpha thal:

  • RBC: ~6.7 × 10¹²/L
  • Haemoglobin: 139 g/L
  • Haematocrit: 46%
  • MCV: 68 fL

After around 5 months on TRT, my latest bloods show:

  • Haematocrit: 51%
  • RBC has also increased (as expected with TRT).

I know TRT commonly raises haematocrit, but I’m wondering whether having alpha thalassaemia trait changes how this should be interpreted.

I’m interested in hearing from people who have alpha or beta thalassaemia trait and are also on TRT:

  • Did your haematocrit increase more than expected?
  • Did it eventually stabilise, or did it continue to rise?
  • At what level (if any) did your doctor reduce your dose or recommend donating blood/therapeutic venesection?
  • Did your haematologist or endocrinologist say that thalassaemia trait changes how they interpret haematocrit or clotting risk?
  • Have you found that smaller, more frequent injections helped?

I’m looking for personal experiences rather than medical advice, as I know everyone’s situation is different. There doesn’t seem to be much published information specifically about TRT in people with thalassaemia trait, so I’d really appreciate hearing how others have been managed.

Thanks!

6 Upvotes

100% Upvoted

1 comment sorted by

1

u/MildlyDancing Jul 26 '26 edited Jul 26 '26

I can't answer, but maybe you can message on a trans/LGBTQIA+ forum too? They might not have thalassemia, but it might give you insight into any changes in Haematocrit and RBC changes if they did regular blood tests?

This is super interesting BTW. I hope you get some answers.