Thalassemia Patients and Friends
Discussion Forums => Thalassemia Minor => Topic started by: Jules on April 25, 2008, 11:09:00 AM
-
In reading these posts, I continue to come across the issue of doctors and their indifference to thalassemia minor. I have encountered that myself in the past; however, I'm seeing a HEMATOLOGIST for the first time next Friday (5/2).
Perhaps I have my hopes up a little too high, but I'm hoping this is the right guy for me. If a hematologist doesn't understand and sympathize, what doctor will??? (Plus, he's Greek, so I'm thinking he must have a little more insight into this.)
Are you guys being blown off by your GP's (internists, primary care doctors) AND hematologists???
Putting the thalassemia minor aside, wouldn't one's hemoglobin and related levels be enough evidence to point to why the patient feels so badly?
I gotta say, if he pooh-poohs me, I'm going to be sorely disappointed.....
Also, for those who have been to hematologists, what do they do upon the first visit?
Thanks, as always.
You guys are great......
-
hi jules i also had an appt with a hemotologist on 5/2 for the 1st time for my 15 year old son who has thalassemia trait. he told us that alll of my sons symptoms which are extreme tiredness, weakness numb arms chest and legs, dizziness, endurance issues, seeing spots/colors/vision changes after exercise exertion, needing lots of rest and sleep, could not possibly be from thal trait as there are no symptoms and all this would have to be from something else. i said what could they be from to humor him and he said i dont know im just a hemotologogist. i requested he order a serum ferritin test just to make sure too much iron hasnt built up in his system and at least he did but he said thal trait isnt enough to make iron build up to damaging levels. our regular family dr took his symptoms way more seriously than the hemotologist, though. ironic, huh? i also had him test his hemoglobin level while there and he said it was just slightly below normal like i think it was a 9.9 or low 10 and he said 12 would be normal. but my son and i know that even with that level you can still feel lots of symptoms since he does no matter what dr. says.
-
Hi Kaoru,
Welcome on the forum,just wanted to tell you that whatever the hell doctor says,9.9 is not slightly low hb,it's very low,and it can definitely effect one's quality of life.I feel sorry for your son,are you giving folic acid to your son? It's a must for every thal.
ZAINI.
-
hi zaini i am giving my son folic acid, even though when we were at the hemotologists and i showed him the bottle of folic acid and told him i put my son on it he told me it was just a waste of my money and wouldnt do anything and said i should throw it away. but i am still giving it to my son since the dr didnt seem to know much anyway. i asked him if it could hurt and he said no its just a waste of money. i heard it takes a few months to help if it does and we just started about 2 weeks ago so we'll see. it would be great if he started to feel better around mid summer and it would make going back to school easier a lot. do you know how much better it can make you feel? thanks for the sympathy for my son not many people understand.
-
Was he really a heamotologist? :crazy i am having a hard time believing he said so :huh waste of money ??? how much does it even cost ?? and it definitely helps,
http://en.wikipedia.org/wiki/Folic_acid
Biological roles
Folate is necessary for the production and maintenance of new cells.[1] This is especially important during periods of rapid cell division and growth such as infancy and pregnancy. Folate is needed to replicate DNA. Thus folate deficiency hinders DNA synthesis and cell division, affecting most clinically the bone marrow, a site of rapid cell turnover. Because RNA and protein synthesis are not hindered by folate deficiency, large red blood cells called megaloblasts are produced, resulting in megaloblastic anemia.[2] Both adults and children need folate to make normal red blood cells and prevent anemia.[3]
Did you get serum ferritin results for your son? because if he has iron defficiency anemia which can co-exist with thalassemia minor,only folic acid will not help,he'll need to take some iron tablets also,but only if he has iron defficiency,so get it confirmed first.
You are absolutely right,not many people understand,i can understand as i am the one who was and is often told that it's all in my head :(
ZAINI.
-
:rotfl
The only waste of money was what he spent at medical college!
-
the dr. was definitely a hemotologist my family dr referred me to him as a hemotologist and his name said hemotologist after it and he told me he was one too. as for the cost, it is only $3 for a month supply so it is almost nothing anyway. thats why it didnt even make sense when he said its a waste of money since its so cheap. thanks for the info on it. we didnt get the serum ferritin test results yet i have to call on friday to get them. when my son was very small and diagnosed with thal trait, the dr put him on iron medicine first (before he was diagnosed with thal) and it didnt raise his iron, so thats when they tested him for thal and it came out that he had thal trait. he was only on the iron med for a short time so thats good since it couldnt build up that much in his system. the hemotologist told me i had been reading too much about thal . sounds like "its all in your head" is what he thought about us too.
-
Hi Zaini. :hi5girls :hi5girls
I believe it is better for them to tell us that its in our head then they have a reason not to do the leg work required to treat us appropriately. "What a shame"
I feel Like as if they are putting me aside and awaiting my death. then on my death certificate the might write "madness" is the cause of death, Instead of carelessness on thier part :mad
It's very hard to keep upbeat when one has all kind of pain and the doctor has the "audacity" to asked me when did the pain start as if its easy.
The pain is consistance and its hard to keep count.
unless one has pain all the time he /or she will never know how hard it is.
The only thing wrong with our heads is disbelieve ??? ??? we continuously ??? how can we be disregard by the doctor, the same person that we are suppose to rely on to assist and cure us inorder to live a descent life, free of pain and illness
Take care and battle on we are the champions
Thanks for being there I appreciate all of you and your kindness you all are the best :bighug
Much love Kathy
-
Sajid,
:laugh :laugh :laugh you are absolutely right.
Kaoru,
Abour iron overload,i think thal minors are not in that big a danger unless they keep taking iron meds for a long long time,we can't say anything about your situation with out knowing serum ferritin results,he can even be iron defficient or he may be not,keep giving him folic acid and when you call to check the results ask them to give you the exact reading.Can you give wheat grass to your son by any chance? it will DEFINITELY help increasing his energy levels and you'll see him up and running in no time.
Kathy,
We all live in a mad mad world :crazy
LOVE YOU ALL.
ZAINI.
-
hi zaini i just got serum ferritin results back for my son and they said his ferritin is 20 which is low normal, but normal. they said 10-105 is normal. at least the iron hasnt built up to damage his organs which is what i wanted to find out. thanks for the info on thal trait not being enough to build iron up to damaging levels. i heard that here one other time also since i had the test done on him, but i just wanted to be sure from the test. at least he doesnt need an iron chelator pill or anything like that. thanks for letting me know about the wheat grass being an energy booster, and most importantly for us, working fast. i have heard about it on here and have looked for it at the supermarket but couldnt find it. i guess its more rare than the folic acid, which is everywhere. i am going to the health food store tonite to look for it. im sure they will have it there (hopefully) i really want it for my son since you said it works fast. it would be great if it helped not to be tired in the summer so he can enjoy his vacation more instead of always being tired.
-
oh dear!
I have thal minor and some symptoms...fatigue, dizziness, palpitations, low grade fever, joint pain, cold extremities. I've been to the hospital a few times with some "inflammatory response" as doctors call it...they dont even know why I have such a high inflammatory response.
When I tell them about my symptoms they usually just say "oh well maybe the a/c is too cold" or "it could be a panic attack or lack of sleep"
The worst part of it is I study psychology and when doctors tell me such things I wonder if it's me the one who's going crazy and exaggerating things and being all..somatic about it, but now that Im on vacation I still get low grade fevers and everything else..Im done with doctors! I rather die than hear again that it's all in my head.
-
Hi Hollynadine,
Actually it's in their heads,the ignorance and the madness,thal minors can and do have symptoms.
But main thing is to detect the reason,being a thal minor we can not associate our every problem with it,it may be relative or it may be not.
Having low grade fever all the time is not good,do you know your hb level? are you taking any supplements?Supplements can help a lot,folic acid should be taken by every thal,minor or major.
Tell us more more about your self and we will advise you accordingly.
Zaini.
-
Hi all,
My hemoglobin is 11.2, which is not bad for me as my hg has varied between 10.5 to 13.0. After a recently blood test the receptionist at my doctor's office called to tell me that I need to begin taking an iron supplement immediately. I am always reluctant to take iron supplements, especially considering that my hg is not too bad. I don't have all of my results right now, but do you guys think that I should take iron? I think this is the eternally confusing question for thalassemia minors....
Thank you,
Sharmin
-
Sharmin,
Did the blood test include iron studies? If not, you should ask for iron studies to be done so they know for sure you are iron deficient, as hemoglobin level will not tell them anything with a thal minor.
-
Thanks Andy, I will request a copy of my results and post them. I don't want to take anything until I post my results here and get your advice.
Sharmin
-
Hello everyone!
Yeah I've been enoying the page really...it's quite a relief to know there are people with thal min. out there who do have symptoms; as I said...I thought I was the crazy one.
Yeah I do have occasional low grade fever throughout a whole day sometimes or just an hour and constant malaise.
About my hb I have no idea where I'm at atm...havent had a CBC in about 2 months because truth be told, I was sick of doctors and feeling somewhat like a burden to everyone here. Doctors tell me it's nothing really, maybe just stress...my mother doesn't seem to be quite eager to hear me complain of whatever ache I have and the rest of my family always think that Im just being dramatic, have a hangover (I only drink wine when I go out for dinner..) and if I faint they say it's probably the hot weather (I live in Colombia)...So based on the lack of support I really just gave up and decided no more doctors unless I REALLY have to go and stop worrying and paying attention to the malaise or fever or..whatever may be the problem.
For the fever and malaise I take ibuprofen or tylenol and I feel just fine afterwards. As I mentioned earlier, I've had a few trips to the hospital and all they can come up with is "high inflammatory response" -but we dont know why.
I would like a doctor like Dr. House...haha
-
Hi Andy,
I don't think that iron studies were done with my blood test. My ferritin is 29 and my hg is 11.2. The doctor told me that she would like to see my ferritin above 40. I think that I will try to have more iron rich food but I will avoid iron supplements unless of iron studies show that I am iron deficient. What do you think?
Thank you,
Sharmin
-
Sharmin,
You can improve with diet and supplements, other than iron. B-complex, folic acid and magnesium all play a role in building and maintaining red blood cells. Iron is the obvious but it is not the only cause for low hemoglobin levels in thal minors. In addition to iron rich foods, look for foods that also contain these other nutrients. You can overcome iron deficiency without taking supplements if you look for ways to include iron rich foods in your diet. I think it's a lot easier on the stomach if you can get your iron from food.
-
Thanks Andy,
I will add iron rich food to my diet. What dose of B-complex would be good for me I am 47kg (I have noticed enormous benefits in terms of energy in little A since you recommended B-complex for him, now I need to be able to keep up!). I plan to add 1mg of folic acid to the 1000 mcg in my multivitamin.
Thanks again Andy,
Sharmin
-
Hello,
I just got back from an appointment with a GP. This is after a visit with my Hematologist. I've got a lot of the symptoms you guys are describing. My only real concern is my lack of ability to run well. I had a bought with fatigue for a few months but that is thankfully going away now.
In any event, I'm getting the same story from the Hematologist and the GP. Can't be Thal Minor. My issue is that I just want to figure out why my running performance is bad. It always has been. My Hg levels are on the low end. (12).
I started to think about this. If athletes can positively impact their aerobic ability by training at high altitude to boost their Hg levels, then it seems obvious that low Hg levels would have a negative impact. Where am I wrong here?
Has anyone ever run this by a sports medicine physician?
Thanks all,
ML
-
You aren't wrong. Hundreds of thal minors who are members of this group agree with you. For some reason, doctors want to lump all minors together, even though their Hb levels vary greatly and so do reported symptoms. Unfortunately, your doctor may only see a few cases of thal minor in his life, so he won't have enough experience to realize that what the text books say about thal minor, is not true for all minors. You are right about the altitude, too. After about 3 weeks at high altitude, your Hb level will rise, and runners and bicyclists both train at high altitudes for this reason. High oxygen level=better performance. So why don't doctors accept that low oxygen=lower performance? The chronically low Hb in many minors does cause problems over time and I suspect that over the years, it can also lead to pulmonary hypertension if the Hb is low enough.
Supplements can help. B-complex, vitamins D & E, folic acid and L-carntine can all help. I'm finding that minors who get serious about supplementing are seeing positive results. I cannot say that any thal minor can do everything physically that they wish, but I do think that all can improve their health by paying special attention to diet and nutrition.
-
The interesting thing is that I'm not actually looking for them to do anything about it. I can accept the limitations. I just want some validation.
My father has similar issues, as well as other medical issues. I feel the doctors end up chasing ghosts because the assume his thal symptoms are not from thal. I think he has visited every office the Mayo clinic has while they try to figure out what is causing his issues. Did I mention that it can't be thal minor because that is asymptomatic? :wah
-
Hi Mlangas ,
:welcome2 , i hope you wil find this community realy helping, caring and ecnouraging, as it is ... feel free to ask or share anything you want to share ...i hope you will get a good response and answer of our concerns/questions, its your own forum so dont hesitate to ask wat ever you wana know about ...
Best Regards
TAke Care
Umair