Hi, I'm new to this forum

Hi everyone,
I'm Linda and I'm 24yrs old. I have beta-thal major but some drs. think I have intermedia. I normally go for 2 units of transfusion once a yr but this year I had 3 transfusion within 4 months. I have no idea what is going on with my body. I normally run on a 7 hemagloblin lvl but when it gets to around 4 I always end up with a transfusion. I have major antibodies problems in getting a blood match. Does anyone else have that problem? Last time it took 2 days to find a match for me and they draw too much blood out, I was declared neutropenic. I am now tagged in the blood bank system for anitbodies and they have to find a close match for me as possible. I had a bad transfusion reaction when I had my gallbladder removed. I also have a fairly enlarged spleen and my iron lvl is about to hit the high lvls. I may have to start xjade (sp?) but I don't know because we are wanting  ttc#2. I have a 21months old lil boy who has the beta-thal trait. Well that is a lil bit about me.

Hi everyone,
I'm Linda and I'm 24yrs old. I have beta-thal major but some drs. think I have intermedia. I normally go for 2 units of transfusion once a yr but this year I had 3 transfusion within 4 months. I have no idea what is going on with my body. I normally run on a 7 hemagloblin lvl but when it gets to around 4 I always end up with a transfusion. I have major antibodies problems in getting a blood match. Does anyone else have that problem? Last time it took 2 days to find a match for me and they draw too much blood out, I was declared neutropenic. I am now tagged in the blood bank system for anitbodies and they have to find a close match for me as possible. I had a bad transfusion reaction when I had my gallbladder removed. I also have a fairly enlarged spleen and my iron lvl is about to hit the high lvls. I may have to start xjade (sp?) but I don't know because we are wanting  ttc#2. I have a 21months old lil boy who has the beta-thal trait. Well that is a lil bit about me.

Hi Linda

Welcome on board.

The fact that your hb maintains at 7 most of time and also you need transfusion only once a year points to intermedia rather than major.  For the antibodies no one can answer your questions better than Sharmin.  Wish you good health. 

Take care
Jade

Thanks,

That's what my husband and my son's hematologist say by what my conditions are, but my 2 hematologists I have both say it's major. I have no idea what they are using to consider me major. I have an appt. next week so I guess I will ask my dr.

Hi Linda,

Welcome on the forum,glad to have you here,with 1 transfusion per year,you are definitely an intermedia,as majors require more frequent transfusions,at your age a major would require transfusion every two or three weeks,and your hb of 7 also indicates that you are an intermedia.

Our moderator Sharmin's son has also faced antibody problems,do you get genotype matched blood ? its really necessary to get genotype matched blood to avoid antibodies,well to completely avoid it one should get genotyping done before getting first transfusion,but now that you have it,its good to have genotype matched blood to avoid more complications,Are you getting any treatment for antibodies? Sharmin's son was given a round or two of Rituximab to clear the antibodies.She can tell you more about that.

When were you diagnosed with thal? Since what age did you start getting transfusion once a year? Do you know what your ferritin level is? Although ferritin level is not a good indicator of iron overload in organs specially in Intermedias,you should get MRI done to check how much iron you have in organs.

Please feel free to ask any question you have in mind.

Zaini.

Hi,
Thanks for replying. That's what my husband and son's hematologist say that I have intermedia but my 2 hematologists both says I'm major. My symptoms and conditions both leads to intermedia but there is something that is making them classify me as major. I have an appt next week and I will ask my dr.

I'm kind of new to the anitbodies thing. I'm not sure if they did a genotype or not but I do know for the past 2 transfusion they have found me the most compatible blood. I'm A+  and they have gave me A- blood before and I did find with it. That was when I first had my transfusion ever. I don' t know if I will be getting any treatment for the anitbodies or not.

Well my bro was diagnosed when he was a child and he had transfusion every 6wks. He refuses to go into the hospital to get more transfusion because he said it hurts this is when he was still a child. My parents went with it and stop treating him. I have no idea what was running in their heads. He's now 22yr old and his thal had seem to stay stable. I was never diagnosed or treated for thal as a child. Until I was 19yr old (2003), going to college and I'm not sure if it's stress that trigger me to be so fatique so I went to get my blood checked and it was down in the 4 so I was transfused.I new I was always anemic because of my bro and his condition but I never knew I inherited a blood disorder. I had 2 other transfusion after that. My husband and I didn't have insurance so I stop getting transfusion and I was pregnant with my son who was born in 07. Being pregnant with him somehow keep my thal stable for those nine months. I had a transfusion a few months later after I had him and my lvl was in the 5's. We decided to go ahead and get it done with no insurance and jobs cause we were both in school. It was around $3000 and we payed it off slowly with our grant money.

My hubby who has been very supportive is now in the AF and we get free health care. Now I'm back into getting treatments and stuff. I forgot what my dr. said about my ferritin lvl but she did say it hasn't hit the pt. where I will need to go on exjade yet. I did all the pre-testing for that drug though so it's there for me when I need it. I will check on that MRI and I also have tons of questions for her. I want my body to be in good condition because we are hoping for another miracle baby. I'm happy to have found this board because I have so much to learn about thal and everything.

I have just noticed I have 2 posting. I guess last night it didn't show up and I repost it somewhere else. Is there anyway I can have one of my posting deleted?

Hi Linda,

I am merging both of your posts.So it'll be easy to detect new replies.

Zaini.

Thank you

Hi Linda,

It may be because your Hb dropped to 4 that they want to classify you as a major. If this is an isolated occurrence and your Hb normally maintains above 7, then you would be classified intermedia. Intermedia is a somewhat vague classification anyway, so it really makes no difference. Your treatment is based on your Hb level and whether or not you need Exjade will depend on your iron load. At this point, it would be better to have a liver scan to assess your iron load, rather than rely solely on the ferritin tests. Where are you located? It would be best if you and your brother saw thal familiar hematologists. The Cooley's Anemia Foundation can help direct you and possibly also have some ideas how to cover the care costs if you don't have insurance.

Cooley's Anemia Foundation
330 Seventh Avenue, #900
New York, NY 10001
(800)522-7222
Fax: 212-279-5999

Patient Services Manager
Eileen Scott
eileen.s@cooleysanemia.org

Hi, Andy
Thanks for the information on the foundation. I will have my hubby take a look at that. We actually have donated to Cooley's but I'm not sure if Chris has checked it out or not. We now have insurance through the military and I have to see the hematologists on base. The bad thing about it is I can't see any drs. off-base unless they don't have that kind of specialty on base. For a year now I haven't been able to get up to 7. I have been in the upper range of 5's and 6's. We just aim for 7 because I can function really good on it. Being in the lower 4's, I tend to have this fatique and feeling like I'm going to pass out feeling. My bro is stubborn and he doesn't want any treatment what so ever    I will look more into finding how much iron I actually have. I would love to see a hematologist that are very familiar with thal. I think I'm the only one here on this base that has thal because when I came in last Aug. (this is our first station) everyone was so curious and excited to see something new. I had so many drs. and students come and look/talk to me when I had my first transfusion here. Oh I live in FWB, Florida (pandhandle). I forgot to mention I also have the Hemoglobin E.

Linda,

You may be able to get around the on base requirement because it is certain they do not have a thal specialist, and especially any doctor familair with HbE beta thal. I would suggest talking with Eileen Scott and seeing what she has to say about this and also where you can go for a consultation in the south. To be honest, most thal specialists would have you transfusing far more than you do because your hemoglobin level is so low. Your brother should also be in a treatment program. As intermedias get older, many health issues do manifest and most can be avoided with proper treatment.

Hi, sorry that I haven't reply back. I've been feeling down this week. I just had my appt today and my blood count is 6.0. My dr. want to transfused me again since I'm having shortness or breath and chest pains. I refused to have it done this weekend so I'm having to go in monday for a recheck. I really don't want another transfusion because I just had one late March. My dr. was talking to a Colonel over in walter hall (sp?) in San Antonio and he was saying for me to possibly have a bone marrow transplant. Does anyone know anything about that at all? Will it help?  Then she was saying maybe take the spleen out. I have no idea what to do or think.  My ferritun is 1006 so exjade is being ordered for me now. I have to stick with military facilities or I will have to copay so that's why we're choosing to go to San Antonio vs Birmingham.

Hello Linda,

I just had my appt today and my blood count is 6.0. My dr. want to transfused me again since I'm having shortness or breath and chest pains. I refused to have it done this weekend so I'm having to go in monday for a recheck. I really don't want another transfusion because I just had one late March.

I think if you are having issues with low hemoglobin, you might want to consider blood transfusion or you might want to try and get some way (Hydroxy or similar hemoglobin inducers) to keep your HB levels high.

My dr. was talking to a Colonel over in walter hall (sp?) in San Antonio and he was saying for me to possibly have a bone marrow transplant. Does anyone know anything about that at all? Will it help?  Then she was saying maybe take the spleen out. I have no idea what to do or think.  My ferritun is 1006 so exjade is being ordered for me now. I have to stick with military facilities or I will have to copay so that's why we're choosing to go to San Antonio vs Birmingham.

A bone marrow transplant is a risky option and it is usually for patients who have very few options like cancer. If you bone marrow is producing some red blood cells, i don't think Bone marrow transplant would be a good option for you.

You mention about taking out the spleen. Do you know how enlarged in your spleen? There are some thal(intermedia) and some thal(major) who have got their spleen taken out and have seen a drop in transfusion requirement but again removing the spleen also has other effects and all options need to be considered carefully.

You ferritin levels are a little high. Thalassemia(Major) are asked to start chelation when their levels hit around 1000. As you mention, Exjade is one iron chelator (removal) medicine, which you can start and you might also want to consider drinking tea with your diet to reduce iron absorption through the gut.

As Andy mentioned earlier, your brother also needs to do some sort of treatment plan for his intermedia. As he grows older, he might face more problems are intermedia's tend to have more issues.

Hi Linda,

I saw your post and I think the doctors you are consulting have very little to no knowledge about thalassemia. Bone Marrow is not an option for you, it is extremely risky with life threatening possibility. I strongly recommend (as stated by Andy) that you should seek a thalassemia specialist. I cannot imagine the base would be so restrictive if it is a matter of person's health.

You should contact Cooley's Anemia for consultation and referral to the doctor. Your blood requiement seems to be increasing and should be looked at by thal specialist. I don't want to speculate with other options like removing the spleen unless you have been examined.

Your ferritin level is in 1000s which is not bad (I don't know why talk about exjade at this level). You should be having a ferriscan to determine the iron accumulation in your liver.