Thalassemia Patients and Friends
Discussion Forums => Thalassemia Major => Topic started by: PositiveVibes on April 27, 2009, 07:58:42 PM
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Hi! I am writing to you again because I am totally confused and tired of all the things that happened to me recently.
Are there any people with thal major who have permanent temperature above the norm? I have been having this problem for a month and I do not know how to cope with it. Every time I measure my temperature it is between 37 and 37.5 C. I did some blood tests, even check my thyroid gland.. everything turned to be ok.. but unfortunately I keep that awful permanent temperature.
I am sick and tired of all these thoughts what problems I could have with my health. My doctor says it is not so frightening and she thinks it may be due to thalassemia major, but it was unsual for me.. So, if anybody has similar problems, please write to me.. I need your help :(
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Rozitka,
I don't think that a temperature of 37 is high, it is well with in the normal range. Do you have other related symptoms that may indicate that you have an infection? Also, what are your ferritin levels? If your ferritin levels are high and you have a fever then you should be concerned - but usually a fever is considered temp above 38. Also Rozitka, do you still have your spleen or has it been removed?
Perhaps these answers will help us guide you better. I hope that we help alleviate your worries.
Sharmin
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Rozitka
Some doctors consider the temperature up to 37.5 is normal.
But if this was not your ''normal'',may be you haveto check whether you are having dehydration or not as it could be a possibility and usually dehydration can rise this half grade.
Also if you are using exjade, sometimes it can cause a slight fever at the begining of administration.
If non of the above, you can examine your body for viruses though they usually cause a fever of more than 38 celcius
manal
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well
i have an experiance with my son Abdulwahab before we made for him a BMT when he sleep in his bed some times i found out alot of wet in his pilow i was confused but with alot of quistions and alot of reserch i think there is a relation between the high temperature and the bone marrow (when i said high temp. i dosn't mean above 38 no but like what Rozi said) in the thalassmic PpL the bone marrow try to give the body what he need from the blood and also the BM try to expand so it work very hard and that give the body a lot of energy that cause the temperature a bove normal and i notice that when his HGB go below 8 of course there is another opinion but that what i got from the Dr's and from my experiance ... now the boy almost 4 years from BMT i found out he start to be normal even his head shape and his body shape also no more wet in his pilow only if he is sick and have high temperature ....
hop i answer your question but don't debend on it i replay my order to you and pls go and make all the blood check also some cultures .....
khalifa
state of kuwait
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Thank you kindly for that information Khalifa. I am so glad that your son is getting healthier - god bless - I hope that each day is better than the last for him. I wasn't aware that there is a relation between thal major and temperature, as I haven't noticed it in my son so far. But as you have mentioned it may be related to the bone marrow working hard. It is very important to determine whether ferritin levels are high though because high iron levels can breed infection.
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Yes sharmin that true ( you let me remember what i forgot ) i used to give my son encluding the desferal alot of black tea that help to reduce the iron also with a lot of water that not containing sudiom or too much salt all that to encrease the folium of urin because as you know the iron go always with urin and the tea make alot of help to let any body drink it he feel he have full blader.. also when i took my son for BMT in 2002 i found out there is fibroses in his lever grade 2 ( it's 1, 2, and 3 ) after we came back home with BMT rejection i found out his feretin level is 6000 so i just gave him desferal and as i said alot of water and black tea when we go back for the second BMT Dr Paola told me his fibroses almost nothing what you did for him ? and as i told you i told her she was very happy because the low feretin and no fibroses help alot for BMT ....
khalifa
state of kuwait
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I wasn't aware that there is a relation between thal major and temperature
Sharmin, every red blood cell that is exposed to hemolysis releases an amount of heat (energy) as a result of such process, that is why most thals are always feeling hot and can not stand heavy clothes. My son is a big example of dressing like Tarazan :rotfl
manal
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Khalifa,
I will be sure to do that for my son too - thank you for your wonderful advice :)
Manal,
My son is a big example of dressing like Tarazan
How cute!! I just adore Ahmad, please give him a biiiiig hug for me :bighug
And yes, you are very right about dehydration causing temperature to increase! Even more important when taking exjade.
Sharmin
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Thanks dear :hugfriend
manal
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Some background notes for everyone first. Rozitka uses Ferriprox. The problem with the low grade fever has persisted for most of the month of April. Previous testing this month did not show any sign of neutropenia.
Rozitka,
The low fever would not be of much concern, except you have told me that during this period, you have not been feeling well. Does the doctor have any explanation for why you don't feel well? Did the doctor offer antibiotics? If not, perhaps you should ask to be given a course of antibiotics to see if indeed, you have a mild infection that is causing the fever. I think you should also ask to have a physical examination of your appendix to make sure it is not inflamed at all. Because you have been taking Ferriprox for awhile and there has been no sign of a low white blood cell count, I think that the fever is more likely caused by an infection and not a med or being thal. It should be very easy for your doctor to exam you to make sure your appendix is not the problem, and because this can be so serious, it should be checked if it hasn't already. My appendix almost killed me so I know how important this can be.
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First of all, i wanted to say thank you to Rozitka for bringing this topic up. I kept forgetting to post this issue for such a long time.
I have noticed my tempreature is slightly higher especially during hot days and when i am sleeping. I just cant sleep without having the fan on even on a rainy day because i would sweat a lot and my body feels hot too.. I would sweat even in an airconditioned room!
when i was in the hospital ward, the nurses would come and check our tempreatures. they would come in odd times and in my case, they had to wake me up to check it. and it will be slightly higher like 37.5C. Of course they would be making a big deal over it because they will not transfuse if i had fever and i have a tough time explaining that it is normal for me to have a higher reading and worse when i'm asleep. that is how i know that my tempreature is higher while i'm sleeping and after that, i wont sleep until after i get my blood. I just tired to argue with the nurses...
I am glad to know that I am not the only one facing this issue. I was being told that the marrow is working hard and that is why i am feeling hot all the time. Does anyone know if this slightly high tempreature can cause something bad in the future?
Nur
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Hi again! I want to answe some of the qestions you asked me.
My ferretin level is abou 1200
I use Desferal combined with Ferriprox
I have my spleen kept, which a month ago was being monitored and was ok
And I did my regular blood tests that was ok again and did some additiomnal blood test , regarding CRP- which my doctor explained that was showing if there is an infention. It was also in the norms.
As Andy asked me about antibiotics, I took antibiotic for 6-7 days when this temperature started, but there was no positive result. So, I stopped it.
I should take in mind the advice to check my appendix, in one or two days when I go to my doctor. That is all.. I don't know what else.. Is it possible to be due to my spleen ..
Thank you very much !!!!!!!!!!!!!!!!!
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Hi Rozitka,
Your ferritin is pretty good and you are on a great chelation plan. I would agree with Andy, and that you should have your appendix checked.
Is your spleen enlarged? Do you have any problems with your spleen?
I hope that you feel better soon, and that your doctors are able to diagnose and treat the source of the problem soon.
Do you take supplements and drink adequate amounts of water?
Sharmin
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yes, sharmin I do drink a lot of water, even more than the others around me. When I was to monitor my spleen, the doctor said it is pretty much in the norms. I missed to mention that I usually feel hot most of the day and swea quite much, if there is some relation to the temperature. I really hope that it won't turn into sth bad. I will go to have blood in 2 days and will check my appendix and got blood tests again.
The worse thing is that I feel very tired of these problems which reflect on my mentality. I started to fall asleep very difficult and have many nightmares concerning my health and the thalassemia I have. It is awful and think I will need to visit a psychologist.. :< I hate myself being so weak in such situations but it is me ! :<
Thanks again!
Take care!
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One other possibility is the gallbladder, so add that to the list of what needs to be checked out.
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Hi Rozitka, Im hot all the winter, i cant wear hot clothes i go out with very light clothes.
My doc once said me an explanation for this.
In thal major patients еrythrocytes dies early and this make extra enerjy in our bodies.
I dont know if i explain it right. :rolleyes :huh
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Hi Tedi,
That is the correct explanation of why thals tend to feel hot. The break down of red blood cells, hemolysis does release more heat into the body.
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Yes, I was told the same and that is why I stop worrying about my temp around 37. Btw it is interesting that usually in the middle of the day I have this temp and when I go to bed and check it is normal - below 37. so, since I don't have any other problems, I will not deal with that temperature anymore :))
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Yes during the day its higher, even sometimes i have something like hot waves.
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hi rozitka,
my boys are the same i think their tempreture maintains at the same level (36-37).
when they were younger their pillows used to be really wet by morning but not so much now. and with the beginning of their transfusion their temps are usually that high, also throughout as the nurses keep checking every half hour. i feel this is normal for them.
emby
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Owh guys, you make me smile and laugh hard. It's funny - I believe. I have it ALWAYS cold. No matter it's winter or summer +30 Celcius dore is brrrrrr-ing. I'll ask my pk def group if there are others like me. It might be difference. I do agree with the bm thing. When my blood counts were dropping very fast around May I also had a warmly high temp.
I hope they found the cause Rozitka. Feeling warm is no fun. Btw where do you live? Where you the person from East-Europe? :S
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Dore,
I stop checking my temperature so I don't looking for any causes.
I am from Bulgaria . :)
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Yes, I thought you were from Bulgaria. I want to vist a friend in Romania with someone else. Dunno where in B you live or where Sofia lays exactly but those countries aren't too far from each other. They are big from themselves. I might send you a message with more info about that.
Anyway, weren't there a young boys twin who underwent a BMT in Bulgaria? how are they doing? Do you know smth about them or haven't you had any update?
Warm wishes, Dore
ps let we know of I can do something for you. I have had contact addresses of Romanian organistaion in the past. The friend is a healthy person so he didn't see the sense to get them again for me. Why I need it. I would like to know how the treatment is in those countries. Take care xx
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I MYSELF have body temperatur more than 37' C almost .... everything is normal but yet my temperature is higher than other .... my doctor said that its may be cuz of fast break down of Hb in thalsemia however she said she wud discuss this with other thal specialists .... but for time being its considered normal
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I'm a thal minor, but my temperature is also always slightly higher. Am always warm and every one who hugs me always asks if i have a fever.
I am prone to mild infections - i feel i have one or the other all the time, even though I am not always aware of it.
Another reason could be the high metabolic rate, if i lie still in bed for few days without much activity, i feel cooler. But the usual days of activities, i feel I burn up fast. The more tired I am, the warmer I feel. To a limit, of course, after which i have to take rest or I will pass out. :-)
Try measuring your temperature, after a long period of total rest.
:-)
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Symptoms
Many people who are infected with the hepatitis C do not have symptoms.
If the infection has been present for many years, the liver may be permanently scarred, a condition called cirrhosis. In many cases, there may be no symptoms of the disease until cirrhosis has developed.
The following symptoms could occur with hepatitis C infection:
Abdominal pain (right upper abdomen)
Ascites
Bleeding varices (dilated veins in the esophagus)
Dark urine
Fatigue
Generalized itching
Jaundice
Loss of appetite
Low-grade fever
Nausea
Pale or clay-colored stools
Vomiting
i red it somewhere so i m posting it here ... I MYSELF had body temperatur more than 37' C almost all the time when my Ferritin was ver high n liver condition was poor (in comparison with my present liver condition) ... dont worry guyz, i bet that ur liver is in far much better condition than mine was .... i dont know that it was bcoze of high ferritin or hep-c or liver .... but i know that my liver is still not super fine , and i still have Hep-B n Hep-C but onething thst is in controle is my Ferritin level .. .so , there is a huge chance that Ferritin could b a reason behindthis low grade feever ....
Best Regards
Umair
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yes Najaf has also high body temperature but doctor gave an anti malaria to her...........
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hi ya all,
for me 2 reasons are more convicning on this isues more than anyother reason ...
1st : Fast decrease in REBCs
2nd : high levels of iron ..
but other reasons are also Not out of question ...
Umair
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Umair as side note, do you know something about inflamned liver? (your posts let me suggest to post this question here)
I have a friend who runs always a lil fever. She says she feels always hot and never cold (not even when it's time for a transfusion).
The strange things of human bodies, huh?
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In the early stage of any liver disease, the liver may become inflamed. It may become tender and enlarged. Inflammation shows that the human body is trying to fight an infection or heal an injury. But if the inflammation continues over time, it can start to hurt the liver permanently.
When most other parts of the body become inflamed, you can feel it – the area becomes hot and painful. But an inflamed liver may cause no discomfort at all.
If the liver disease is diagnosed and treated successfully at this stage, the inflammation may go away.
Dore,
i hope i answered your question , but i m not sure .. so , i m still searching for more details ....
Links about liver diseases :
1 - http://health.discovery.com/encyclopedias/illnesses.html?article=3307
2 - http://www.fitnesshigh.com/readarticles.php?id=377&title=Acute%20Hepatitis,%20Causes%20of%20Inflamed%20Liver%20Disorder
3 - http://uimc.discoveryhospital.com/main.php?id=3307
4 - http://www.wellsphere.com/wellpage/inflammed-liver
Best Regards
take cAre
Umair
still searching
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Inflammation
In the early stage of any liver disease, your liver may become inflamed. It may become tender and enlarged. Inflammation shows that your body is trying to fight an infection or heal an injury. But if the inflammation continues over time, it can start to hurt your liver permanently.
When most other parts of your body become inflamed, you can feel it – the area becomes hot and painful. But an inflamed liver may cause you no discomfort at all.
If your liver disease is diagnosed and treated successfully at this stage, the inflammation may go away.
for more details : http://www.liverfoundation.org/education/info/progression/
links :
1 - http://www.netdoctor.co.uk/diseases/facts/hepatitis.htm
2 - http://www.medhelp.org/posts/Gastroenterology/Chronic-liver-inflammation/show/235994
3 - http://www.sinomedresearch.org/hcv/articles/c2_LiverInflammation.htm
4 - http://www.healthblurbs.com/causes-of-inflammation-chronic-inflammation-joint-inflammation-reduce-inflammation-diet/
Best Regards
Take Care
Umair
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What is Liver inflammation?
The word Hepatitis means Liver inflammation. Hepatitis is one of the four major ways we can have inflammation of the liver. The other way is drugs. Toxicity caused by excess use of drugs can overload the liver. The third is the excess use of alcohol. The fourth is very poor digestion.
When flow stops or it slows down then our liver can become toxic and over burdened.
Poor digestion can stress this organ, as it can our other organs.
Some of the other causes of Liver inflammation can be infections like mononucleosis and parasite infections, haemochromatosis which is iron overload of the liver, (the body cannot process iron and it builds up in the liver) which leads to inflammation of the liver, heart and pancreas.
for more : http://www.aboutinflammation.com/liverinflammation.html
Umair