Thalassemia Patients and Friends
Discussion Forums => The Spotlight => Topic started by: Danny.H on May 13, 2014, 08:12:43 PM
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Hello everyone !
Just awesome to find this group were we can share our experiences.
I want to start typing a little bit about my life cause will make sense down some lines.
I was born and raised in Rio de Janeiro Brazil. Down in South America I didn't go often to doctors ,during all my life I just went when annuals were needed after adulthood,a broken bone , flu , hiring exams, pre nuptial ,etc...
Once I moved to the US I didn't boder to go to the doctor until I got pregnant with my first child. I had couple awesome pregnancies but the tiredness and anemia , also had low Hb but after pregnancies and C-sections ,neither my doctor or I worried about it.
Since May 2013 I started to go to the doctor for a case of early menopausal symptoms. After blood work one more time I was found anemic( I don't go to the doctor often but during all my life I was always anemic and presented pale and microcitic Hb ). It's something that always annoy me because people tend to blame it on my vegetarian diet ,luckily my doctor do not make part of this crowd.
My doctor asked to start over the counter iron in June 2013 , around October I needed to go back suffering froma strange abdominal pain ,since he didn't find nothing but my anemia didn't improve so he prescribed another form of iron. I did more couple exams and doubled the dose ,what didn't change the anemia. So in February I was sent to the Hematologist got Colonoscopy and Upper GI done also a CT scam. The hematologist doubled my dose of iron ,pretty soon I was in such a debilitating pain that I start to think I had an aggressive form of MDS syndrome ,since my father had it for 10 years and passed from Leukemia in 2012. I was tired,dizzy,foggy,had low blood pressure ,edema,and pain in bones and joins through all my body.
I had made peace with God and had asked help in explaining to my family they would need to follow their ways without me , when the hematologist told me I have thalassemia and shouldn't take iron.
However the doctor hematologist did't do much about my symptoms,just sent me back to my PCP .
I went home just to find out that iron is toxic .so I already talk with my doctor to see if the iron I took will need to be taken from the blood.
I 'm out from iron for one week and a half and I'm feeling better,but still some edema and pain in the joints
Not like before .
I believe that my veganism and Gerson Therapy treatments save me from something worst.
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Please do not ever take iron again. It is iron that causes abdominal stress (how did the doctor not explain this?) and iron is absolutely useless for anemia caused by thalassemia. Iron can cause joint pain, so that may be the answer. You might want to consider a natural iron chelator like IP6 or green tea extract to see if it improves things.
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Thanks Andy for your input .Yes I'll never make use of iron anymore in my life. I probably would have more health if I have never take iron. Like I said before I do a part of the Gerson therapy and also did some liver flushs . I'm not aware of IP6 ,but just going online and checking out.
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danny h.,
your case sounds just like mine, but i popped otc iron for 30 years & HAD hepc.
do get the hgb elect. test & ferretin/iron saturation load. one year ago my ferretin
levels were 2000 & iron sat.90%. 5 mos. ago i finished my 2nd round of hcv meds!!!!
not only am i hcv free, but did 2 rounds of blood letting & am down to a mere
450 ferretin!!!! no more iron pills, excercise ip6 & healthy nutrition & proper vitamins
will work. best of luck in your journey.
ucbgal
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Thanks ucbgal,
I do not know about my last ferritin count but trying to get this information from the hematology doctor. Until now they didn't release my medical records to me .
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Hello everyone.
I just want to give you an update since my first post.
First I want to thank you for the support this is an amazing community . I learned a lot reading your posts were everyone share ,experiences,hopes,good advices, symptoms or not etc...
Thank you for caring for each other. :hugfriend
My healthy has been improving . I had some difficult days still at the end of May that made me decided not just for keep the Gerson therapy detox but start a completely raw diet . I was already a vegan but now I'm a raw vegan in at least 90% cause once in while I do have a cooked potato. I m also taking at least one capsule day of IP 6 ,and vitamins B,C,D,E . I'm also loading on folic acid.
June was a transition month I was noticing my improvement day by day :biggrin
I do not know what kind the exams my doc used to check my iron because I sure didn't see levels of ferretin,or iron saturation, no ferriscan,either and because my doc was afraid to let me bleed I loaded on I P6 until the crisis pass. I still taking one pil a day . It was a little odd but my body detox itself also givin me a period that lasted during almost a month. After it I noticed more improvements.
To Complete I started this month July with one more change I started to jogging. A friend of mine that saw my struggle with my health invited me to try to run a marathon at the end of September . I don't know about a marathon but my body is responding very well to the training, and I'm very happy and pleased .
I also want to share with you that after getting my paperwork from the hematologist whom told me to not worry and that it's not a big deal. ( even when I was in pain and very worry about my children) the DNA text they did gave me the information that I have -3.7 -3.7 or in others words I received it from both of my parents and I should have advice before having kids. I hope my husband is a normal . In the better scenario my children ate both silent carriers ,but my hematologist thinks it is not a big deal. :huh
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Updates....
I have been at my PCP again cause I'd like to keep an eye on my blood I did some more blood work the problem is the doc thinks I'm anemic and want me back to the hematologist .... I ask for a new hematologist ,actually I'm going to search a new one :wah
One thing I know no iron!!
08/22/2014 B-12, serum 602.30 pg/mL 250.00-1100.00
08/22/2014 folate, serum 6 ng/mL 12-150 Folate SerPl-mCnc
08/22/2014 leukocyte count, blood 5.3 10^3/MM^3 10*3/mm3 2.8-10.6 WBC # Bld Manual
08/22/2014 erythrocyte (RBC) count 4.54 10^6/MM^3 10*6/mm3 3.80-5.40 RBC # Bld Auto
08/22/2014 hemoglobin, blood 10.8 g/dL 11.5-16.0 Hgb Bld-mCnc
08/22/2014 hematocrit, blood 31.7 % 35.0-48.8 Hct VFr Bld Auto
08/22/2014 mean corpuscular volume, RBC 70 UM^3 fL 81-102 MCV RBC Auto
08/22/2014 mean corpuscular hemoglobin, RBC 23.7 pg 25.7-34.1 MCH RBC Qn Auto
08/22/2014 mean corpuscular hemoglobin concentration, rbc 33.9 g/dL 29.9-35.0
08/22/2014 red blood cell distribution width 14.2 % 11.0-16.0 RDW RBC Auto-Rto
08/22/2014 platelet count 212 10^3/MM^3 10*3/mm3 150-395 Platelet # Bld Auto
08/22/2014 mean platelet volume 11.9 UM^3 fL 5.9-9.4 PMV Bld Rees-Ecker
08/22/2014 lymphocyte count, blood, automated 1.80 10^3/MM^3 10*3/mm3 0.50-3.20 Lymphocytes # Bld Auto
08/22/2014 monocyte count, blood 0.30 10^3/MM^3 10*3/mm3 0.10-0.73 Monocytes # Bld Manual
08/22/2014 neutrophil count, blood 2.70 10^3/MM^3 10*3/mm3 0.90-8.60
08/22/2014 eosinophil count, blood 0.40 10^3/MM^3 10*3/mm3 0.00-0.50 Eosinophil # Bld Manual
08/22/2014 basophil count, blood 0.10 10^3/MM^3 10*3/mm3 0.00-0.20 Basophils # Bld Manual
08/22/2014 lymphocytes as percent of blood leukocytes 33.6 % 11.0-47.0 Lymphocytes NFr Bld Auto
08/22/2014 monocytes as percent of blood leukocytes 6.4 % 0.0-10.0 Monocytes NFr Bld Auto
08/22/2014 neutrophils as percent of blood leukocytes 52.0 % 46.0-84.0 Neutrophils NFr Bld Auto
08/22/2014 eosinophils as percent of blood leukocytes 6.7 % 0.0-5.0 Eosinophil NFr Bld Manual
08/22/2014 basophils as percent of blood leukocytes 1.3 % 0.0-2.0 Basophils NFr Bld Manual
08/22/2014 iron, serum 29 ug/dL 40-160 Iron SerPl-mCnc
08/22/2014 transferrin, serum 306 mg/dL 180-329 Transferrin SerPl-mCnc
08/22/2014 iron saturation percent, serum 7 % 18-54 Iron Satn MFr SerPl
08/22/2014 iron binding capacity, total 438 ug/dL 261-478 TIBC SerPl-mCnc
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One thing I see over and over in reports from alpha thal carriers is supposedly low iron. I do not believe they are iron deficient. Iron is specifically warned about in alpha carriers because it won't help the anemia of thalassemia. But, your TIBC is within range and this would be above range if you were actually deficient. In addition, the RDW would also be higher, typically >18 and often in the 20's when IDA is present. Doctors not familiar with thal are often unaware of the RDW distinction between thal and IDA. And, the RBC tends to run low in IDA.
Silent carriers often don't even know they carry alpha thal. The only risk occurs when a silent carrier has a child with someone who has both alpha genes on one cluster deleted, as that can lead to HbH disease (you have one gene deleted on each of the two clusters), a thal intermedia phenotype. So, it is important that they understand this about their status when they are of child-bearing age.
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I also am not sure what to make of the folate test.
08/22/2014 folate, serum 6 ng/mL 12-150 Folate SerPl-mCnc
6 is far below range, but the range shown here doesn't coincide with standard ranges, which are 2.7 to 17.0.
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Thanks for your input Andy.
I just don't know what to expect if I agree to my referral to hematologist. You already know my history ..
I still wondering.. Last time I was there they wanted to infuse iron until figure out I was thallassemic. So maybe it makes me feel a little bit more confort in going back there.
I wonder if having a phenotype of Intermedia makes me have more symptoms also.
...at this point I have been suffering from a gallbladder pain episode since last Wednesday ,today I did a liver gallblader flush. Starting to feel a little better but kind lightheaded .
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More updates....
Next week going to hematologist,in the other week will have an ultrasound off abdomen.
I have been having abdominal pain since October 2013( I believe is iron related)
Even not taking iron anymore since May I still having problems.
I found a naturopath doctor that want to treat me for thallassemia,and because my current skin color he told me that probably I'm having issues with my liver. He also mention that my anemia probably is folate related and he wants to check all my blood work and tests until now so we'd can approach and fix the problem.....
I'm so frustrated with myself for letting my other docs fill me with iron...I was a healthy person until may 2013 :wah
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I think the subject of this topic should be changed for: " Minor and iron overload it's possible?" :wah