Is ZYNTEGLO really able to help Thal Majors keep their Hb in normal or near-normal ranges ? Is there anyone on this group who has tried this drug ? Yes, the cost is too expensive. About 2-3Million dollars.

Dear all,
I was aneamic since early childhood, I was a regular at the local haematology department, and I was treated with iron supplementation until the age of 20, when by chance I met a haematologist who diagnosed me as a beta thalassemia minor, a trait not at all common where I grew up. It runs in my family (mother, maternal grandmother, brother, daughter, niece all affected). My HgB is usually around 10, sometimes down to 9 in more difficult (stressful) times. Not sure if I have intermedia, I do definitely have symptoms of anemia.
On the upside: my affected grandma is soon turning 90, and she is super active and fit and strong - the only sign of the anemia she ever had was that she tended to sleep and nap more than usual.
I've been reading this forum with great interest since quite some time, and I am grateful for the advice and inputs I have read here. Looking forward to discussions here.
All the best to all of you!
Anita

Hi! I’m a 36 year old female, hoping to have kids in the next couple of years. I’ve been struggling more and more lately with exhaustion, pain, and migraines. I discovered I had a gluten and histamine intolerance and cut out gluten and high histamine foods. 6 months later my skin is clear, but I’m still just as tired and hurting. I eat SUPER clean. No gluten, no seed oils, local grass fed meats, lots of fruits and  veggies.

I had a huge blood panel done a month ago. Literally nothing was abnormal except the blood smear. No issues with thyroid, inflammation, nothing. My doc said ‘you probably have thalassemia minor based on your blood smear, but it shouldn’t cause your symptoms’

After researching minor, lots of things make sense. I’ve always been horrible at running the mile, but great at sprints and things that require strength- like pull-ups. I’ve been extremely active my whole life, and just thought I was being a baby when it came to pushing through the pain of aerobic efforts. My best mile time was pretty terrible at 9 minutes, but at one point I could do 20 pull-ups, a lot for a woman.

I was an outdoor adventure guide for the last decade and took a job a year ago doing work as an arborist. Things have gone downhill fast. I’m wondering if the 8 hours of hard physical work is just too much for my body to keep up
With? Am I hurting myself or my bones by working hard every day? I just started taking folate and vitamin E at the suggestion of this forum, and have also been taking D, magnesium and zinc.

Relevant blood panel info:
Iron panel showed no deficiency
MCV: 76
MCH: 23.8
RDW: 15.7
Hemoglobin: 12.3

I apologize for being absent for so long, but life has become more difficult. My wife has metastatic breast cancer that has spread to her bone and is in intensive treatment with both chemo and radiation. I have very little time and am quite often emotionally exhausted.
I will continue to keep the site open, but my presence will be infrequent.
Thank you for your understanding.

L-methylfolate is preferred over folic acid, as it is processed better by the liver. It can be very effective. I take it daily to combat fatigue from my bad thyroid and it works well. It also keeps my Hb quite high. Only natural vitamin E should be used. it will be marked D-alpha tocopherol, not Dl-tocopherol. Dl is the synthetic form and is made from industrial waste products.
Keep giving your child good wholesome foods that are nutritious.
Her status is most likely intermedia.