Thalassemia Patients and Friends
Discussion Forums => Thalassemia Minor => Topic started by: desertthal2 on January 31, 2007, 10:49:39 PM
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hi everyone :) i am a 27 year old mother of 2 girls, ages 4 and almost 2, and all 3 of us have thalassemia. we live in the hot california desert, but not by choice. my husband is in the marine corps :) anyway, we are dealing with an irritating situation dealing with doctors and trying to get them to understand thalassemia. maybe i just don't know all the facts, but my dr. is refusing to believe that there is any connection between the immense heat out here in the desert and it's affects on people with thalassemia. we are currently living in base housing that only has a swamp cooler. anyone who has lived in such a hot climate knows that swamp coolers are not very efficient. anyway, we have been trying to get on a new list for base housing that have air conditioners. we are jumping through hoops trying to get paperwork signed and get dr's orders signed to allow us to get on this list sooner before the heat kicks in sometime next month. i have been searching for proof all over the internet to take to my dr. to avoid arguements over this and to finally put him in his place, so to speak. unfortunately, i am coming up empty handed. is there anyone out there who understands what i'm talking about and who could point me in the right direction to help my arguement? does heat really make a difference for people with thal or is it just me????? please help me! thanks a lot :) take care
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Well, if the base will accept testimonials ... count me in. I live in Houston and heat is always a consideration in planning my day. I have a threshold that if ignored, puts me bedfast and severely nauseated for 24 hours before life slowly returns to normal.
And, like you, the doctors cannot explain it, but refuse to consider Thalassemia as a contributing factor. Normal people know to bring a sweater to my house as I control the thermostat and anything above 72 degrees is not a topic for discussion.
Good luck in obtaining the base housing and thank you for the sacrifices your family is making to the security of our country!!!
Lloyd
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Almost every thal I have known complains about the heat. Lisa was always hot. I was often surprised to see how lightly she dressed even in the dead of winter. I believe it is related to the heat given off by the destruction of blood cells (hemolysis) in thalassemia. Because of the excess number of cells being destroyed there is an abnormal amount of heat produced. This occurs even in minors as the small misshapen blood cells are removed
This topic comes up regularly. I even ran into a post of Danielle's at our old MSN site where she talked about wearing t-shirts even in cold weather. I do wish doctors would learn to listen to patients. It might make them more aware of what problems patients have in the real world.
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Yes, count me in too if you have any petition to sign on this regard.
I am Thal. too and have a hard time in the summer. It causes various troubles to me such as nose bleeds because of the dry heat and a hard time breathing when it gets hot and humid.
Apart from that I guess it is totally insane of them to deny you facilities if they can provide em.
Good luck in convincing your doctor.
Take care, Peace!
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Hi DesertThal! Welcome to our group! ;D
All I can say is we should have all these skeptical doctors come to this board, so they can see with their own darn eyes that these things are actually true. Most Thals that I have spoken to have this same kind of heat intolerance. I have it as well, and wear short sleeves when it's snowing out. I've been feeling more cold lately, though. I don't know if it's just me getting older or it being colder out. No idea. I just think these "know-it-all" doctors should visit this site and see what Thals actually have to say, instead of going by their books and lack of knowledge on the issue. :rolleyes
Sorry, it just really aggravates me when doctors don't take the patient's word for something. Are we stupid? Do we not know what's wrong with our own bodies? I think not. :whyme
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thanks for all your understanding and support :) it's nice to know that this isn't all in my mind. i have an apt. with my dr. on monday and i think i will give her the link to this website and tell her to read it over...... the dr. that isn't being understanding is my kid's dr. he's just one of those guys who goes by the book. i know that he's doing the best he can as a dr., but sometimes there are just people who don't have "textbook" cases and need to be treated accordingly. like you said, we are the only ones who know our bodies and no one can really understand this desease until they've lived with it. and i've been living with it for 27 years, my mom has for 55 years, and my grandparents for 80+ years and they think we don't know what we're talking about?
we have had some good luck though with the base. they are putting us on a program called the "exceptional family member program" so that once all that paperwork is filled out, we can get on the list to get in the air conditioning houses. i'll keep you posted on what happens :) again, thanks for all the support guys, it makes me so happy to know that me and my girls are not alone :) take care!
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Hi everyone. You can definitely chalk up one more thal minor who ALWAYS feels hot. Gets rather annoying to have to answer the question "aren't you cold?" every day in winter and sweat like a pig when everyone else is enjoying summer! Have to wear short-sleeve dress shirts year-round in my office.
I also asked my oncologist that diagnosed me with thalassemia if always feeling hot was one of the symptoms associated but she would only give me a 'maybe.' I'm surprised so many doctor's either don't know or don't want to tell us that they're related. But I'm certainly glad I found this board so I know I'm not alone!
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Hi nemisis,
:welcome to the site.
I hope you will find it very useful. Please feel free to ask any question that you have in mind. I'm sure that you will find all the memebers very friendly and helpful.
Take care.
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Yikes. I live in Santa Monica and driving downtown to work is a drag on a hot day...Anyone with anemia hates the hot weather. Heat promotes RBC destruction too and it dehydrates us. If you need a consultation, consider calling Children's Hospital in LA (they also see adults for thal) and they are one of four major CDC centers for Thalassemia in the US. You would need to see Dr. Coates or one of his excellent RN's.
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Earlier this year I read an article on the Internet about tennis great Pete Sampras and his coping with Thal Minor. Pete mentioned that he had had problems--it was difficult for him to play in the heat. I don't remember where I read the article. However, another article, Wikipedia's article on Pete, mentions his thalassemia, and his reluctance to let people know about it. He's been open about it since he's retired.
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Yes, that's true. Sampras didn't want opponents knowing about him being thal minor as they might use a stalling method of play to tire him out if they knew. His strategy was to dispatch opponents as quickly as possible to conserve his energy. It worked and he was one of the top tennis players of all time. He has been open about thal since retiring. I wish he would choose to be more of a spokesperson for thals. We could really use the help of more celebrities in publicizing thal.
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Tally another one to low heat tolerence..
my anxiety is coming back also due to many many stressful things going on
anxiety can cause hot flashes which ive experienced in full today
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Make sure you stay well hydrated and eat something salty if your mind starts to feel cloudy. Anxiety can be a product of physical problems that have nothing to do with your normal stability. Speaking from my own experience with heat.
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This is always a very interesting topic for me and I plan to ask my network about it.
My friends are always dressed like it is summer, but being a pkd'er I just have it always cold. I dunno of it is just my strange body or common under pkd.
Shall I reveal a secret? I will attend a thal camp this summer and after my apply they told me it is gonna be 45C! :noway I have always said I love the heat, I feel better and need less transfusions (told you I had a weird body), but 45C might be a bit too hot...? :scratch
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Make sure you stay well hydrated and eat something salty if your mind starts to feel cloudy. Anxiety can be a product of physical problems that have nothing to do with your normal stability. Speaking from my own experience with heat.
I always feel very warm/hot/overheated! If i've done some work and I'm tired, then I can even rest in the freezing cold AC temperature and feel like I'm inside a furnace!
Summers are unbearable with my dizziness and daily migraines. I take the salt sugar solution before i step out even in the evenings. Or the ready to drink electrolytes solution. Taking several showers helps a lot, even though its temporary. and yes i tend to get anxiety or irritated fast when i'm in a lot of discomfort.
Wish there was an easy solution for this - where we could 'feel' normal!
:-)
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And i don't even need to do any work to feel over heated,i sweat profusely,even while sitting beneath a fan,day and night,i often wake up at night drenched in sweat,and now a days this weather of 95 degrees is killing me.
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If the heat is causing discomfort and anxiety like symptoms
another thing you could do is put a cool wet cloth on the back of your neck (near your vagus nerve)
this can help slow your heart and stabalize o² and co²
doc suggested it for ME and it seems to help a bit
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Exactly, I used it too during my bicycle vacations. Though it looks a little weird. I am sorry you experiece' things like that Zaini.
Today we had our first 25C day and I have all my windows open to welcome fresh cold air. :)
I hope this thing does the trick for you.
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Yes I do that too, but on my forehead and sometimes my feet (if i'm home).
I also have a gel ice pack at home, that doesnt turn into hard ice - so it feels comfortable cool.
But going out is definitely a problem, because the hot and cold together can cause problems. Regular temperature wet cloth is a very good idea of course. :-)
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its nothing
today in Karachi :rotfl the temperature was 37 degree Celsiuses
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about 85f then the heat index around 90f here today...but yard has to be mowed its going to rain..and yard takes forever to dry
HERE GOES NOTHING!! :dunno
:wink
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hi ya all,
it was 48c here in Faisalabad ... an extremely hot day :tantrum :whew ...
Umair
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Good grief!! Hopefully it wasnt very humid as well
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Moik,
it wasn't humid .. just calm but hot winds .. interesting thing is, the kids was playing in ground infront of my house at 5-pm ... :D ...
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Confused, i m confused,
As said in posts above that thal remains hot makes me confused.
I remains cold during most part of the day, even right now my chest, abdomen and upper arm areas are cold.
I asked once my pediatrician about this coldness and even with high sugar level(at that time) my lower arm was very cold but he was unable to answer and said very frankly "Don't Know why it is happening?
I t i s Confusing
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Confused, i m confused,
As said in posts above that thal remains hot makes me confused.
I remains cold during most part of the day, even right now my chest, abdomen and upper arm areas are cold.
I asked once my pediatrician about this coldness and even with high sugar level(at that time) my lower arm was very cold.
I t i s Confusing
During hypoglycemia my body turns cold and numb. I experience low sugar levels frequently.
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It is in addition to "HYPO" time.
I always take one or two unit less than what is prescribed because doc will not come to rescue after prescription and my goal is <200 level.
Due to Hypo body suffer more weakness so it is better to avoid hypo and to have mild hyperglycemia.
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Dharmesh,
Is your thyroid hypo? It is common among thals and will also cause one to feel cold easily, as is the case with me.
The reason that thal usually causes people to feel hotter is the heat released by the ongoing hemolysis.
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It is in addition to "HYPO" time.
I always take one or two unit less than what is prescribed because doc will not come to rescue after prescription and my goal is <200 level.
Due to Hypo body suffer more weakness so it is better to avoid hypo and to have mild hyperglycemia.
Neither I. I decide my own doses, haha. But sometimes I couldn't save it from happening and it turns occurs unexpectedly.
My goal is also less than 200 but my levels decreases also rapidly and increases at the same pace as well. Though I got my dose reduced a bit since last few days.
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Dharmesh,
Is your thyroid hypo? It is common among thals and will also cause one to feel cold easily, as is the case with me.
The reason that thal usually causes people to feel hotter is the heat released by the ongoing hemolysis.
Oh God Please, If you live on earth, please don't gift me Thyroid,
I know You believe in me but keep me away from more consequences.
Dear Andy i was talking about Sugar Hypo due to Diabetes i.e. Hypoglycemia.
My favorite doc. has suggested me to do Thyroid tests bi-annually.
This is the latest one done on 16.08.12
T3 = 1.243ng/ml (0.56-1.88)
T4 = 49.8 mmol/l (59-153)
TSH = 2.748 µIU/ml (Adult 0.4-4.0)
Even i shown this report to Endo. but he didn't comment.
Previous TSH on 21.02.12
TSH = 1.66 mU/L (0.3-5.5)
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Your thyroid levels are fine, Dharmesh.
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Thank You for the guidence.
Thank God.
But what about coldness and symptoms.
Sweat makes me cold ?
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I live in the high desert of New Mexico and always have had a problem with heat. Before that I lived in Virginia and the heat AND humidity bugged me. I get the nosebleeds, too.
My daughter fusses at me all winter long because I won't turn the heat up...
Anyway, several years ago I bought a window unit ac and then a couple years ago I bought another. The swamp cooler just doesn't cut it late summer when even the desert is humid.
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I live in Riyadh Saudi Arabia and we survived 60C this year. I mean 60 degree Celsius. And i feel unusuall.y more heat than normal people and my room temperature is unbearable to other people. Iusually weear tshirt in winter weather, sleep without blanket with direct AC air throw on me. When in a closed room with others ina room during winter, my ears emit heat and i feel so hot that i leave the room and go outside in cold to lower my temperature. It must have to do with haemolysis
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Hi Waleed,
I think it is the heat wave. 60C, no kidding. In Canada the other extreme is -25C to -30C during winter with windchill. People would suffer frost bite if skin is exposed more than 10 minutes. The snow turns into hard ice. Well, what a wonderful world it is.
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I am so glad that I found this thread. I live in South Australia and it's unbearable hot during the summer. We get temps of 40 degrees celcius and higher all summer. The heat absolutely kills me. I get severe migranes, nose bleeds and chronic fatigue. I sweat so bad that I have to change my clothes several times a day. Both of my parents, my son, my brother and I all have Thal Minor and we all suffer badly in the heat. My brother and I are lucky that we only Thal Minor given that both of our parents also have Thal Minor.
good luck getting cooler housing. Your family deserves to be comfortable
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My 15 month old daughter too sweats a lot. Though we stay in Bangalore where summer isn't too hot, i have observed her perspiring profusely during summer. I did not think this was unusual till I saw her sweating this winter as well, even at night. Though it is not very chilly in Bangalore during winters, it reasonably cold in the morning and at night. While rest of us don't prefer to be under a fan during winters, she likes to be under a fan as she feels warm and hot most of the times. All the while I was wondering what could be the reason for her sweating so much but it never occurred to me that it possibly could be because of her being a Thal major.
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My 15 month old daughter too sweats a lot. Though we stay in Bangalore where summer isn't too hot, i have observed her perspiring profusely during summer. I did not think this was unusual till I saw her sweating this winter as well, even at night. Though it is not very chilly in Bangalore during winters, it reasonably cold in the morning and at night. While rest of us don't prefer to be under a fan during winters, she likes to be under a fan as she feels warm and hot most of the times. All the while I was wondering what could be the reason for her sweating so much but it never occurred to me that it possibly could be because of her being a Thal major.
I also experience this. I sleep outside (as in in the other room) currently (during winters) just due to the fact that my parents can't bother fan and I cannot sleep without it. I Just need mild fan during winters most of the time to fall asleep or else I'd just rotate in the bed from here to there, lol. I'm also sweating now while I'm typing (probably as there was my BT today). It's normal, don't worry.
-P.