My Journey; the Difficulties and Embracing

I have a few simple questions but before that, you guys will obviously need to know my biological differences and the chapters of my journey. It will be a long one, believe me. And some words may be out of order because it's 7am and I haven't slept yet.

I'm 21 years old born with a blood disorder called Thalassemia. Now, they're are 2 different types, one being worse; minor and major thalessemia, where major is obviously worse. You can do a quick google search if you have never heard of this. Unfortunately, I have Major Thalassemia which means I have to permanently rely on a blood transfusion every 3-4 weeks because my body cannot produce the appropriate red blood cells needed. Now, what other complications are there by having this? Pretty much a long list but to keep it short and simple, I live my life to the fullest and the expected rate of living is no more then 65 years old and has been dramatically increased due to advanced technology and I'm thankful for that.

So where does testosterone replacement therapy (TRT) come in?
Well remember the long list of complications associated with Major Thalassemia? Well, when I go for a blood transfuion every 3-4 a week for 21 years, you are not only inserting new red blood cells but you are also inserting TONS of iron into your body. So this is where testosterone replacement therapy (TRT) comes in. When you have lots of iron (called Iron Overload) you are damaging your organs and your organs are not able to properly function and thus, damaging my hormone and pretty much everything. But what is the way to reduce the iron? It's called Iron Chelation. Iron chelation is taken orally or inserted by needle everyday. Back then, no more then 3-4 years ago, oral chelation was the NEW and BEST way for iron chelation as then having to take a needle and having it on for 8-12hrs and creating scar and bruises. I have lots of noticable scar tissue from the injection sites and they're not pretty good to have as many friends asked me where I got them scars from and I had to lie because I'm insecured about it and was young. When I was about 16-18, my testosterone levels were dropped down to nothing. I'm not too great with these measurements but my levels were 0.5 and the normal range my doctors said was 15-25. The reason why my testosterone dropped was because I stopped taking the iron chelation and I was young and stupid and thus I had iron overload. I had a CT scan on my liver to test the amount of iron and it was beyond the maximum reading which was 45 (not sure about the exact measurements but CT scans of liver do not go anymore then 45).
Now some of you may ask, why did I stop taking my medication (iron chelation) ? Well, being 16, and having no real parents around and switching from 2 foster homes and 3 different family members will do a lot to a young person, especially at the time of learning and growing. So I have this disease for the rest of my life (unless I get a bone marrow transplant which won't happen unless it's a miracle and the waiting list is over 15 years but that also brings up more complications like, if the bone marrows transplant didn't work and my body rejects it, the risk of my dying is really high and other complications will occur so I'll stick with what I have) and I have never really experienced what family is about. The only person that I have is my brother who is 1 year older then me and I only wished he didn't do drugs and fucked up his body because he was blessed with a body that worked normally and me? Well you know the story. So why did my brother not have Major Thalassemia? Well when 2 minor thalassemia people have kids together, there's a high chance of the baby contracting Major. And the sad part was, what my mother told me. So before I was even born, my mom asked my dad to be tested to see if he was cleared of any diseases or what not. So my dad said okay he will. Shortly after I was borned, doctors found out I had major thal and my mom burst into tears as the doctors explained this to her and this could of been prevented if my dad didn't lie to my mom. So imo, i was born a lie. But I don't mind, I love my life.

So now you know the basic chapters of my life. Might be confusing or what not but it's just me.
Getting back to the topic, so after about age 19-20, I moved into an Adult clinic where I was being transfused. The doctors told me 100% straight up what will happen if I don't do this and that. Well, back when I was in the young hospital, catered to infants-teenagers, things were not told straight to the kids. The information was usually told to the parents when visiting for check ups every 3-4 weeks but I had no one there by my side. The only memories I had when I felt supported when I was aged 4-8 years old going to the clinic with my brother and mother by my side. My dad and mom broke up and later me and my brother was put into foster but that's another whole new chapter. So when things got out of control, iron overload, at age 16, the only thing the doctors asked me if I was taking my mediciton and I said yes and that's all. They couldn't ask my parents because no one was there. When I would sit and watch tv and have blood tranfused into my body, I become a bit more tired, sleepy, and dreamy, but I look around and every kid had someone there beside them for the whole 8 hrs and I was the only kid who sat alone and got picked up by someone later, but always the last person to leave. So continuing on, when the doctors explained 100% truth to me when I moved to the Adult clinic, i was shocked. I shit myself (not literally) but like, WTF? Why didn't they explained this to me when I was 16? About the effects of growth, and everything! By the time I was already 19/20 years old, I had develop a new disease (apparently its on my hospital profile and I only accidently found this when I peeked into my doctors computer screen, hehe) I had delay puberty.

So here is where my life starts to roll in better. I started the testosterone replacement therapy (TRT) and the first week, holy CLARITY! I feel like more alive and a sense of well being. And I started back on my iron chelation to reduce my iron, but since I fucked up my liver and heart, it'll take a while but my journey is only starting. So starting this testosterone replacement therapy (TRT) was great. And I'm on serious progression on my iron chelation (extreme cases of iron chelation is where patients are inserted a tube into their veins and are injected desferal for X amount of time, usually 1-2 years will bring it back to normal ranges) so I have this small device that I carry around 24/7 a week and it's infusing err day! Here comes the good news! I've been on it for a very long time... I'm 21 now... and I started around 20... and my doctors recently told me that by December, I will no longer have this device in me (was put in surgery) and will be going on oral chelation. I'm the happiest man alive.

So what are the questions for you guys?

Well, my doctors being specialized in Thalassemia/Red Blood cells and not an Endocrinologist, when I explained to them the symptoms and what had happened during the use of TRT... they simply didn't do SHIT!
I told them about my nipples being really sensitive and shit but went away after 2 weeks and I told them about it and they said if it continued, let them know but it stopped. Another thing that happened within 8-16 weeks was the build of weight. I gained soo much fucking fat or some sort of water in my body, I cannot fit into any of my small/medium dres shirts! And the funny thing is, when I came into for a transfusion, after not seeing them for 4 weeks, the doctors was shocked on how much fat I had gotten but all they said was it was due to the testosterone, well NO SHIT! I even advised them that I did a huge amount of researched and that I need to be on anti-estrogen blockers but one of the doctors said (not an Endo) if I take anti-estrogen blockers, there's a chance of breast cancer and bla bla... Now a days, everything gives you cancer. Radiation from TV, and phones. But they refused to prescribed me the anti-estrogen and I was mad but cool about it. because I'm getting the free tesosterone and feeling happy but looking fat and ugly! I couldn't do anything aobut it! Been working out for a month and it's toned up a bit but still a lot of fat or water lol. And booking an appointment with an Endo takes at least 1-2 months... yeah long time.
So in the mean while, do you guys think I should take estrogen blockers to help reduce the fat or water while already having the fatness?
And if so, what brand/type? And if possible, over the counter?
Another question is, I'm currently on the lowest dose possible, 3-4 weeks of 200mg of testosterone and I believe it's cypionate. How would I feel if I increased to 3-4 weeks to 400 mg? My doctors told me most patients are on that level of dosage, 400mg. But when I read other forums, people amp that shit up to 500mg a week (jucing up for gains) and I wonder how they feel lol.
But I want to stay at a safe range while building the most muscle I can because I was a skinny guy (135lbs at 16-18) and now I'm like 180lbs of fat... And my diet hasn't change... I swear to god lOL.
So what is the maximum dosage I can go safely if I were to try to convince my doctor to increase my dosage?
And the reason why my dosage is low is because I have so much iron in my heart that if I had increase a lot of Testoerne, I will have heart complciations. But since it's coming down, I can at least try to increase my dosage now! I'm happy!

I'm finally embracing everything and life is amazing. I have delayed puberty, I look like I'm 16 dude LOL... I get ID everytime I go to buy alcohol or w/e. But side note, I haven't done everything that a normal kid would do. Like learn how to drive, how christmas really feels like, how having a simple family feels like. I missed out all of that and I know it's not my fault but I know when I have a kid of my own, my kid will experience all of that! And testosterone replacement therapy (TRT) is great! Although I'm about 2-3 years beyond in school due to dropping out and shit but everything is back on track and I only need 4 more credits do get my HS diploma! I ain't going for no GED buddy! HS diploma all the way! Even if my 21-23 year old friends are in college and having nice cars, and family, I'm going to build my chapter on the foundation of independence; years of personal sole strenght and hardship. I'm looking forward for the future!

Wish me luck on my journey and help me out on the questions I asked! Dumb doctors not prescribing me estrogen blockers!
>:D
 

Megatron28

Moderator
I'm not trying to be an asshole, but how about a cliff notes version? That is way too long to try and read -- at least for me.
 

wvdave

New member
Glad you're taking the necessary steps to get healthy. A good friend of mine suffered from hemocrhomatosis, that was NOT fun.

As far as anti-estrogen meds or increasing your dose: I would pause, get bloodwork done. Be sure they check E2 (estrogen). If your doc wont do it, you can pay for the test outright through various websites and have blood drawn. It sounds like you might have increased E2. That should be your priority.
 
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