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veejay
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Hi Dianne, i just wondered if you are now having treatment, ? i had blood taken last week and have to have it taken every week for 10 weeks initially, i also had to have a saline drip in my other arm as i have very low blood pressure, i just hope i will feel better after all this, i have some weird sensations sometimes, like hot spots mainly on my legs, as if something has been spilled on me, and the feeling if i say rub my forehead of a stinging sensation, hope to hear from you soon, and that you are getting some help, my diagnoses and refferal and treatment were all very quick, i cant understand why they took so long with you, best wishes Jean |
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veejay
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Hi, can anyone tell me what difference it made to their health or if yoi felt better after having treatment, did it make any difference to whether you felt less tired or had more energy etc, I have to have blood taken for 10 weekly sessions, and i am hoping i get some energy back, I hope someone can give me some answers, thank you in anticipation |
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LittleButerfly
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Iron levels of over 600 are horrible! Should be under 50. That person needs a new Dr! If your sons have it, you are a carrier (1 gene) or you have it (2 genes) I believe you can look to be enemic, because hemochromatosis suffers often don't absorb enough B-12. Throughout my life I was misdiagnosed with anemia, but I have hemochromatosis. Your parents either were carriers or had it, too. Same with your husband. He would be stupid to not get tested. If one waits for symptoms, damage has been done! If he has it, and does not seek treatment he will die of complications, plain and simple. Frankly your doctor sounds uninformed, which seems to be the case a lot of dr.s with regard to this disorder. Typically, if undiagnosed and untreated you would start exhibiting symtoms about 10 years after menopause. I think you should find a new Dr. My GP referred me to an onocologist (no hematologists in my area), and I have done much research on the internet which is very helpful. YOU are your best primary care provider!
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rowblay
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This is true. You get i copy (gene) from each parent. I have 2 copies of C282Y. 1 from Father, 1 from Mother. |
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rowblay
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I beleive the 1st time of bloodletting, I was wooozy. But in other cases, I was not phased. The energy came in spurts. some days were great and when it got really bad, I knew it was time for another appointment. |
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Di57
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I want to say I feel so much better; got my ferritin within normal range now and am so excited. Liver pain gone, digestive problem gone and not near as tired. Hooray!! Now just have to go back in couple of months for phelbotomy for maintenance. |
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veejay
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Hi littlebutterfly, not sure who you are referring to, when you that person needs a new Dr, i am having treatment, but after 2 bloodlettins i dont feel that good, my ferritin level was 950 to start wiyh last test was 800, just had another test , waiting for results, my mother must have been a carrier , dont know anything about my father at all, and will never know, but my mother would not have had it as she only died last year aged 96, i just wondered if after getting down to 50 i would feel more as i did before, i was taking b12 last year as i had bells palsy, and is supposed to be dood for nerve function i was told, i am hoping to feel a lot better soon, i have always had lots of energy, but now feel weak and tired,I was told by my consultant that there are 5 types of Haemachromatosis, i w am assuming that both parents had it now, as i am a carrier and have it too,my ex husband has made an appointment with his Dr i believe, he already has angina and diabetes, his father died at 62 of cancer , so he is quite worried, he asked his Dr, some years ago for a test but was refused, as his Dr said you cant have you are just a carrier, my Dr DID test me and at that time i was clear, so i dont understand it
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veejay
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Hi Dianne, I am so pleased for you, did they tell you what your ferritin levels are now? i was told they wanted to get me down to 50, but the ideal is 15-20, i hope i feel better after a few weeks, i feel terrible today, but seem to liven up late at night for some strange reason, anyway good luck. i hope you continue to feel well |
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veejay
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Hi rowblay thank you for your reply, i have 2 sessions of bloodletting and have;nt felt too good for a couple of days afterwards, like you though, my energy comes and goes, did you have to have blood taken weekly? my sons just hsve to go every few months now, how do you feel generally, do you feel more as you once were, in good health |
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rowblay
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Since I have to travel so far, I was going (1) a month instead of weekly. I went for (4)months straight having the asphersis treatment. On the last visit, my blood clotted the lines up real bad. after several attempts on both arms, they called it quits. when the nurse went to send the plasma back in me, she missed the vein and the entry point on my arm had swollen up like a golf ball. It has been 7-8 months since I have returned. The head of that department stated my iron was in the 100's at that time so she cautioned me not to let too much time pass befroe I go back. I do recommend the aspheresis treatment because it takes 2x red blood cells out and returns your plasma with another solution so you really don't loose fluids. |
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