They Say Its Not Serious, So Why Dont I Bleed?

I have what i have been told is thalassemia minor. I also have 2 children with the disease. Every doctor i have visited and every web site Ive seen has said its not serious and treatment is not necessary, so why is it that when I'm about to get my period i cant get out of bed? I feel weak, dizzy and get stomach aches. In fact in the last three months i have not bleed at all, just spotted and gotten blood clots. I know what your thinking but I'm not pregnant. My husband had a vasectomy and i have taken tests. I have always from an early age had trouble getting out of bed, felt exhausted, got extreme headaches and stomach aches. I now see this happening to my children. It seems that thalassemia has been lumped together. Either you have minor requiring no treatment or major in which you would die. Sadly there is no in between. Due to my experience i know this is untrue. In my case it is somewhere in between. I need help! If you know of anyone who has this and is experiencing similar symptoms or you know someone who can help please contact me. Thank you

cathyraiders cathyraiders
5 Responses Mar 10, 2009

Just to update my story that was written in march....It is now the end of october and its been almost a year since i had my period. I have been to three doctors who have no explination for it. According to the doctors i dont have anything wrong that is causing this, but they dont think its caused by my BTM either. I am not shocked by this because im constantly told there are no BTM side effects. I remain convinced it is because of the BTM.

I came across your story while searching for help with my BTM symptoms. I experience difficulty in breathing and heart palpitations & lightheadedness. Feeling cold and relentless fatigue are commonplace. Similar to you I would get so dizzy I couldn't lift my head off my pillow about two weeks before my period. Eventually my period stopped for months without explanation then it came back with a vengeance, massive bleeding. I went to the doctor and she put me on something to start my period and then birth control to regulate my periods. The pills had the opposite effect, my periods stopped altogether. I am good with that because my debilitating pre-menstrual dizzy spells went away as well. I’ve not had a period in about 5 or 6 years now which is fine by me. Medical experts say there are no symptoms with BTM because they have not conducted studies with BTM’s to uncover the symptoms. the path of least resistance is always the easy way out. Let’s face it, we are all not making up the exact same symptoms, nor are we hypochondriacs. This real and it’s about time the medical community wake up and recognize the reality of BTM sufferers.

hey all u guys can send an email on my hb levels have increased medicines are unani with no side effects so please mail them

hi..i am new to this site. i've known i've had thalassemia minor for about 35 years..i am now 56. it really hasn't been a problem other than not being able to take iron duirng my two pregnancies. i was recently diagnosed with also carrying the hemochomatosis gene, only one gene, not both, but that along with my thalassemia minor made my ferritin (iron) levels sky rocket last year..i've been under the care of a hemotologist in a boston hospital and having monthly phlebotomy treatments to get the iron liver enzymes were elevated iron levels are coming down nicely, but my hemotologist says i'm somewhat of a complicated case b/c i have the thalassemia minor, it was adding insult to injury...i don't know abou tyou folks out there but some days i just feel totally wiped out and then the next, i feel great, lots of energy, been like that my whole life so i always attribute it to having T.M. i'd be anxious to see everyone else's symptoms as supposedly, we're not suppose to have any

Same story here. I hate fighting myself to do the things I want to do. Having a seven year old and trying to live an active life leaves me with what feels like not enough down time for my body. The feeling I get from talking to my Dr. is that it is going to be a mental fight I have with my body for the rest of my life.

I am a 62 year old man who has thalasemia minor. Other members of my family also suffer from the disease. My experience with the disease has been varied depending upon activity. The disease causes chronic anemia and also impairs the ability of the blood (hemaglobin) to absorb oxygen. I cannot tolerate low oxygen environments created by high altitudes. My spleen has always been enlarged and I recently discovered that I have 2 or 3 times more red blood cell producing marrow in the long bones of my legs than a normal person my age.<br />
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My enlarged spleen disqualified me from service in the military during the Viet Nam War and probably saved my life. I remember being chronically tired as a child but have adapted to that condition by ignorning the symptoms and pushing myself. My father used to deal with the condition by taking frequent short naps during the day. <br />
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The disease has generally been self limiting and there is no known treatment for it. Iron supplements are not effective in treating the disease. Supplemental oxygen can help in low oxygen environments. Because high altitudes contain lower levels of oxygen most people with the disease can not tolerate snow skiing. <br />
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The main concern for younger people suffering from thalasemia minor is marrying someone who also has the disease. If two people who have thalasemia minor produce a child there is a high probability that the child will have thalasemia major which is a devastating disease. It is recommended that anyone suffering from thalasemia minor have their prospective mate tested for the disease before having children.