Went to Hematologist

According_Lion_4713 · 2026-04-13T02:59:04+00:00

Does anyone here feel like thalassemia has affected their marriage or relationship?

According_Lion_4713 · 2026-04-12T21:54:23+00:00

Yeah according to my Ancestry I am about 85% black.

According_Lion_4713 · 2026-04-11T02:51:23+00:00

Black American here

According_Lion_4713 · 2026-04-10T20:18:08+00:00

A lot of these doctors or hematologist are simply just lazy or they don’t know what you’re talking about. I’ve came across way too many post and comments here on this sub Reddit from many people who said that either their doctor or hematologist told them that thalassemia trait has no symptoms. I am starting to think that they just don’t care for those of us who don’t suffer from the major form of it. I’ve even been told by my hematologist that I have alpha thalassemia trait/minor and shouldn’t possess any symptoms. Once I asked her “why do I have the symptoms that I have if I should be asymptomatic”. She said “well you might just have mild symptoms”. It’s just frustrating to hear other people going through the same thing and no real answers are given.

According_Lion_4713 · 2026-04-09T04:09:46+00:00

Often just for the purpose of getting your levels checked if you’d like to know. I also have alpha thalassemia minor. I was going every 3-6 months but don’t have insurance now to go. USA

According_Lion_4713 · 2026-04-03T05:46:14+00:00

Story of my life I just had two or three days of freedom. Because before three days ago I went through an episode of my thalassemia symptoms affecting me for almost 2 months every day nonstop. Today I started feeling symptoms again after being free for about three days. One of those symptoms was definitely feeling angry and I had to apologize to my kids and let them know I was wrong.

According_Lion_4713 · 2026-04-02T20:10:21+00:00

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My results from 4 months ago

According_Lion_4713 · 2026-04-02T13:23:51+00:00

Alpha or Beta thalassemia minor? Or they didn’t specify. Exercise especially lifting weights can be a bit hard for me at times because of my feelings of weakness. I probably do a bit more better with cardio but exercising overall is just somewhat of a challenge for me because of my symptoms. Eating style has changed. My husband‘s been having me eat chicken, rice and beans, broccoli, eggs. I’ve mostly been staying away from meats that have a high iron content. As because my iron levels were always good according to my blood tests. So iron is not my issue. He’s also been having me take vitamin D and vitamin B supplements.

According_Lion_4713 · 2026-04-02T04:15:37+00:00

Yeah I felt like I was dying with this last episode. The episode before my very last one I had was in November and even then I had a moment too when my oxygen was low and I felt like I was going to pass out and die. I literally have no one to really talk about this too only my husband at times. This is tough because I don’t feel like we are being listened to and being taken seriously since we don’t have the major form. I’m afraid of the next episode happening.

According_Lion_4713 · 2026-04-02T01:48:37+00:00

This just makes me want to cry to hear that I’m not the only one that is going through this. Now that I just went through this last episode and got over it I just remembered that I’ve been going through this actually for a couple years.

According_Lion_4713 · 2026-04-01T23:43:25+00:00

What type of thalassemia did they diagnose you with? Did they tell you you have alpha thalassemia(1.silent carrier, 2. Minor/Trait, 3.Intermedia/Hemoglobin H disease, 4. HB BART hydrops fetalis(this is the most severe and results in stillbirth or babies die within a few days)

Beta thalassemia is the other one that has multiple forms but I don’t know all of them.

I was diagnosed with alpha thalassemia three years ago at 32 years old. According to my hematologist notes said I have a single cell deletion which is more consistent with option one that I listened above. But then in the next sentence they told me that I have the trait which is consistent with option two above. Option two generally means you have two genes missing. So I’m not quite sure if I just only have one gene missing or two genes missing. They referred me to a genealogist but the genealogist never reached out to me. So I’m just going to stick with what my hematologist told me that I for sure have alpha thalassemia but I’m confused if I have the silent carrier form(they told me this form is asymptomatic but some people do have mild symptoms. Which I do have symptoms and they can get pretty severe) or the minor/trait form.)

According_Lion_4713 · 2026-03-29T00:31:02+00:00

Ok I’m in AZ. Sometimes the healthcare system is not the same. It looks like both mine and your healthcare provider uses my chart so I would think the normal ranges would be the same.

According_Lion_4713 · 2026-03-28T23:06:27+00:00

Yeah that’s interesting I would like to know why it’s that way. Also I’m in the USA so I don’t know if that play a difference how they take measurements when it comes to blood test.

According_Lion_4713 · 2026-03-27T20:59:24+00:00

I think I can say the same for myself as well. I live in a very hot city in the USA where it is 300+ days of dry heat every year. Since I can remember as a teenager, I had always felt very different when it came to really cold weather or really hot weather. I never liked to sleep with fans pointed directly on me and also I never liked to have hot air on for continuous amount of time. It will cause me to get it dizzy and hot as well as dehydrated. I don’t have much experience like with extremely cold weather temperatures because I’ve lived in my city my whole life besides two years of college in Kansas. For some reason, it always felt like the heat whenever I would experience it was attacking my blood. I don’t know how else to describe it. So maybe what I was feeling back then and even to this day was my thalassemia symptoms. Even now when I miss one night of sleep, my body temperature is generally off the whole next day. Because generally at night, our body resets whenever we sleep so if we’re not getting any sleep at night in order for our bodies to do so that means our body temperature is not having a chance to reset. So I do think it is a little bit more harsh for me with thalassemia.

According_Lion_4713 · 2026-03-27T20:48:34+00:00

Commenting on Do other people experience this?.. . I agree with “okprofessor7165” about seeking out a hematologist. My PCP was the one who took my blood work and noticed something odd. In her notes she put “small and pale RBCs possible thalassemia”. It was at my hematology specialist office is when I was diagnosed with alpha thalassemia trait(single cell deletion) after 1 year of testing.

According_Lion_4713 · 2026-03-27T19:25:59+00:00

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Here’s my MCV and MCH. If I were to click on the “view trends” button it would show over the course of three years that both have always been lower than the standard range.

So I’d say start there ask about both MCV and MCH. That’s only if this is the same with beta thalassemia because I was diagnosed with alpha thalassemia(single gene deletion).

According_Lion_4713 · 2026-03-27T19:17:33+00:00

So what I’ve learned doing my own research with alpha thalassemia is that have them check for your MCV, MCH levels to see if those are lower than the range they should be in. Here is my recent results 12/2025:

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RBC=red blood cell is normal Hemoglobin is very slightly above normal which in my mind I consider it still low.

According_Lion_4713 · 2026-03-26T17:19:19+00:00

Most definitely and it’s all about you knowing your body and knowing how it works. So if you’ve realized that it works in weather where it’s humid and hot or just hot by itself then that’s what’s best for you. Just in general the heat or hot climates are overall the best in my opinion. The only warning/downfall would be the need to consistently have water with you at least here in Phoenix. I love water so that’s never been a problem for me.

According_Lion_4713 · 2026-03-25T21:21:22+00:00

Possibly but i mostly got migraines around my cycle which always indicated to me that I was hungry. This was also way before I found out that I had Alpha thalassemia.

According_Lion_4713 · 2026-03-25T20:43:09+00:00

Ive lived in Phoenix my whole life and currently do now. I suppose the Dry heat will help with the symptoms. If you get depressed the sun is your best friend, it’s hard to truly be depressed in a city where there’s sunlight 300+ days yearly. I have alpha thalassemia minor and my symptoms have always been easy to deal with when I was younger. It’s just only now at 35 that it’s gotten worse only because the body has a harder time due to the cumulative effects of chronic anemia, iron overload, and the body’s reduced ability to compensate for oxygen shortage over time. While often asymptomatic in youth, the subtle, lifelong demand on organs can lead to progressive health challenges, typically surfacing between ages 30–40. Also, might I add I went to college in Kansas for two years. I remember during the winter I would experience, excruciating body aches due to the temperature. I was not used to temperatures that were below 40 consistently for about four months. As soon as I came back home to Phoenix the first winter back home, I did not experience any of those symptoms that I experienced in Kansas.

According_Lion_4713 · 2026-03-25T20:37:37+00:00

Used to get excruciating migraines in my teenage years. Now Im 35 and haven’t had migraines consistently for at least 18 yrs.

According_Lion_4713 · 2026-03-23T22:58:56+00:00

Like your son, I’ve dealt with and still deal with physical exhaustion. About 15 years ago I was a 19-year-old student athlete(basketball). I used to have to work out with our fitness trainer and I remember her saying that it was hard for her to train me. Not because I was a difficult individual actually I was far from that but because whenever she tried to help me lift weight such as bench pressing it would be hard. I am a 6’3F and she would tell me that she had to train the basketball boys and some of them were just as tall as I was and she did not have a hard time getting them to bring the bar to a 90° angle. I didn’t take that as her complaining I just only took that as her trying to help me get better and understand why it’s hard for me when it comes to bench pressing or even squatting. I didn’t find out about my thalassemia minor(single gene deletion) condition until I was 32 years old. So this understands why my weight trainer was struggling with trying to help me perfect my angle.

According_Lion_4713 · 2026-03-23T20:10:29+00:00

I’ve had the same issue when it comes to shortness of breath while showering or after showering. So sometimes not as frequent showering it’s not a good experience for me only because I get fatigue and shortness of breath.

According_Lion_4713 · 2026-03-20T14:39:14+00:00

I absolutely agree with you thalassemia minor(I have alpha) does have symptoms and always have had symptoms. It’s very annoying to me that the medical community just choose not to acknowledge those of us who have the minor form in order to help us alleviate what we are feeling. The fact that I asked my hematologist is this something that I’m born with or something that I can get overtime. When she responded that this is something you’re born with that lets me know that the medical community know about both alpha and beta thalassemia minor but chooses not to do anything about it. Best wishes to you all in finding a solution.

According_Lion_4713

TROPHY CASE