thal intermedia and "flu"

Hi all,
     I have been struggling with my health the last 5 months, and wonder if any one else with thal intermedia has had similar problems. I know I am in the older range of thal intermedia, and maybe this happens to older people, I don't know. I have had very serious "flu", three times in 5 months. Two times I was hospitalized for dehydration. I've been in severe pain. Doesn't that seem odd to have the flu 3 times in 5 months? The attacks were so violent, it almost reminds me of my severe gall bladder attacks, but I had that thing removed! I also get so fatigued that it is difficult to walk across a room. My doctor doesn't have any insight.
    I'm wondering if something else is going on. It has worn down my resistance and my strength. I have had difficulty working, and wonder if I need to stop working. I have 4 more years to retirement, but I don't think I can make it that long. Are there any older thal intermedias (in their 50's), who have had similar problems?
     Thanks for listening, and I hope to hear from some of the elders. Love to all, Jean
     

Dear Jean

I might not be of any help in answering your questions, but i wish that you will feel better soon. Please try tio increase your immunity by food like honey, lemon, garlic onions,.... ( i know they sound uuh ,but actually they help)
Please keep us updated about your health and take good care of yourself  cause you are very dear to us all
You are in my prayers

Manal

Thank you, dear Manal. You are so sweet and have helped me with your kind words. I am going to make myself a honey/lemon drink right now. Thank you, love, Jean

Jean,

Are you taking magnesium along with calcium? Magnesium deficiency has been implicated in cellular dehydration and may be an explanation for the dehydration many thals experience. Magnesium should be taken along with calcium and vitamin D, in no less than a 2:1 ratio of calcium to magnesium and possibly even a 1:1 ratio, as magnesium is poorly absorbed.

Hi Jean
I was about to e-mail you when I suddenly see you r posting.
Thanks  for the compliments it was a happy occassion for my family and friends.
Although I'm so concern about your health I'm sad to hear about your worries and struggle with your work.I know it can get very hard and a difficult choice to make
I gave up work because I was always sick and tired and muddled, I thought it was for both myself and my employers' sake. Since then I've been taking take care of my health and reduce stress in my life.
My last blood work shows that my iron studies result was below acceptable level. the doctor didnt prescribe she said to wait for six months to see how it gets.other than that I seems to be managing other health issues the medications are helping still as you know it has its up and down days. I am still struggling with lots of pain but I refer  that it is due to my sickle cells.
I do hope you come to a decission that will benefit you and take it into consideration your current health status.
I will continue to pray and hope for the best for you.
Take care Jean we are all here for you
All my love
Kathy

     Kathy - thanks for the support and kind words. Not working is not really an option for me right now because my son is only a sophmore in high school, and my daughter is a sophmore in college, but it is getting so hard for me to work. I have 30 years of teaching in, but I need 4 more for maximum benefits. I am going to check out some alternative options. 
     I am glad you seem to be doing better with some of your health issues, except for your pain.
                                                                                                                                               Andy - I do take the right combo of magnesium to calcium. I can't figure out why I get these "flu" episodes. Maybe it is just the flu, but that seems unusual. Before I had my spleen out, I was hospitalized for the "flu" 7 times in one year before they figured out it was my spleen. Now I'm starting to worry that some other organ is starting to go, but I don't know what it could be. There aren't many left! Just kidding. I wish I knew what was going on. Thanks for your help. Jean       

Hi Jean,

First I'll ask the obvious. Have you been on daily antibiotics since your spleen was removed and do you get an annual flu shot?

Also, you mentioned severe pain. What type of pain is it and does it only occur during the bouts of "flu"?

Hi Andy,
     Dr. Vichinsky did not recommend daily antibiotics after my splenectomy, and I can't take the flu shot because I am highly sensitive to eggs. The pain is weird. It is like my insides are inflamed, like an internal allergic reaction. Wearing socks hurts my ankles. It feels like my bones all hurt and are burning, and I have to keep moving, kind of thrashing around in bed. I get a severe headache, my lower back hurts really bad. I wake up in the middle of the night with extreme nausea, and sometimes start throwing up. One time I threw up for 15 hours. I get severly fatigued and get short of breath walking across a room. I also get a fever, usually in the 100 range. I know there are much worse conditions and problems, but it is the chronicness which wears me down.
     I usually don't feel well the week before this happens. My midsection also swells some the week before and I can't wear anything that is tight at all. I feel lightheaded and have difficulty thinking clearly.
     I don't know, maybe it is fibromyalgia or chronic fatigue combined with thal. No doctor has ever wanted to really discuss possible chronic fatigue syndrome. The Chicago thal center had recommended trying to keep my pretransfusion level in the 8 range to help with iron overload, and to see if any other problems could be detected. This was a change from Dr. Vichinsky's plan to keep my pretransfusion level above 10. The few times I have gone down to the 8 range, I have not done well at all. I get extremely fatigued and in pain now with a hemoglobin that low, even though it was that and lower all the time before I started transfusions.
     I talked to the Oakland Center where I used to go, and Dr. Vichinsky e-mailed my doctor and said to keep my hemoglobin over 10 again. I got the flu in November though, with my hemoglobin above 10, so it is not just that my hemoglobin was lower. Dr. Vichinsky also said that health seems to deteriorate in thal intermedias after age 50.
      I have an appointment at the Chicago thal center for the end of July, to get annual testing and see their cardiologist. I just think it's strange that the same thing keeps happening, with the same symptoms. I am feeling better, but my bones still hurt. Maybe it is muscles and fibromyalgia. I don't know!! It's just nice to be able to vent my frustrations with everyone because doctors don't seem to want to hear about too many symptoms at once. It is frustrating to them; they want to just try to fix one thing at a time. I need someone to look at all these recurring whole-body symptoms and try to figure out the whole picture. Thanks for listening to me ramble on, Andy.  It helps to just get it out of my system. Jean     
           

Jean,

In addition to all the other reasons for keeping your Hb high, there is one more extremely important reason and this affects intermedias quite often. Extramedullary hematopoiesis occurs in thals and especially in non-transfused or under-transfused thals. It is a mass that grows in numerous possible locations throughout the body and produces red blood cells, which usually isn't a help as they are no better than what the bone marrow produces. Depending on where they grow, they can also cause extreme pain that comes and goes as the mass presses on the spine or organs. It is not always easy to find and diagnose either. Keeping Hb high limits their growth.

I think you need to follow Dr Vichinky's advice and keep your Hb up. Some of your symptoms do sound like they could be caused by low Hb. And others do sound like you may have chronic infections. I am always puzzled why some doctors say daily antibiotics after splenectomy and others say only when needed.

Andy,
     Thanks for the information and advice. I hope that keeping my hemoglobin up will help things. Is there a way to test for extramedullary hematopoiesis? Does it show up in x-rays? Thanks again. Jean

I am surprised as well that your doc did not recommend daily antibiotics if you cannot take vaccines...I myself have a very difficult time with vaccines - they had me on prednisone when they gave them to be to ward off the swelling and hives.  If your body doesn't tolerate vaccines well, my hemo always prescribes antibiotics.  Maybe you should ask him if you might take some cortisol for the swelling? It might be a reaction.

Jean,

I've seen references to MRI's, x-rays, ultrasound and CT scans as methods of finding the masses. Extramedullary hematopoiesis (EMH) is often treated with conservative doses of radiation.

From http://cat.inist.fr/?aModele=afficheN&cpsidt=1591936    (this particular case concerns a mass that pressed on the spine).

Conclusion: Recognition of spinal cord EMH requires prompt physical examination and MRI for accurate diagnosis. EMH can be managed with radiation, surgery, transfusions, or a combination of these therapies. Radiation in conservative doses of (750-3500 cGy) is non-invasive, avoids the surgical risks of potentially severe hemorrhage and incomplete resection, and has a high complete remission rate in the majority of patients. Relapse rates are moderate (37.5%), but retreatment provides excellent chance for second remission.

In thalassemia it is sometimes treated with transfusion therapy and hydroxyurea. 

From http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1516-84842006000100018&lng=&nrm=iso&tlng=

Management strategies have included radiation and transfusion therapy. Hydroxyurea with transfusion therapy has been associated with clinical regression of EMH in thalassemia.

Since these masses can appear throughout the thorax, they may or may not cause problems depending on where they are located.