New & Excited!

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New & Excited!
« on: April 05, 2012, 04:54:51 AM »
I am so excited to find this forum!  I was diagnosed as a child, approx. 45 years ago, with what was then only known as "Mediterranean anemia".  Doctors have always ignored it and prescribed iron as I am reading here over and over.  Through my own research, I was able to determine several years ago that what I have must be one of the Thalassemia Minors but could never find a doctor to confirm it.  They have always just taken my word for it, wrote it in my chart, and ignored it.  There are no hematologists in my area, I would have to drive to another State (in the U.S.), however, recent health problems caused me to wind up in the Emergency Room and referred to a cardiologist.  The cardiologist looked at me funny and asked about my descent, obviously, because I do not appear to be of any Ethnic background.  Just a Heinz 57 American.  LOL  But, he did take me seriously enough to order a Hemoglobin Electrophoresis which I had never heard of until now!  I am so excited to get the results and finally have somewhat of an answer for what has been causing me problems for so many years.  I don't have those results back yet, but my latest CBC indicated:  Hgb 9.6, MCH 20.8, MCHC 31.5, and MCV 66.3.  I know all of these are low and indicative of thal minor.

I am starting to believe the chest pains, shortness of breath, etc., that cause me to be sent to the ER and then the cardiologist ARE a result of the long-term untreated thal minor.   I have been reading for hours and looking forward to learning much more abou this disease and highly anticipating the results of the electrophoresis.  My mom had it also and passed away several years ago after years of having been constantly just told to take iron and treated as though she were just lazy.  I wish I could tell her about this site!  Thanks for listening!

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Offline Andy Battaglia

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Re: New & Excited!
« Reply #1 on: April 05, 2012, 04:12:52 PM »
Hi DDCheri,

If you have been on long term iron supplements, you should ask the hematologist to run an iron panel to make sure your levels are not above normal. Long term iron supplementation can be dangerous when not needed, so please have this checked out.
Andy

All we are saying is give thals a chance.

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Offline Bobby

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Re: New & Excited!
« Reply #2 on: April 06, 2012, 02:38:47 AM »
Welcome DDCheri.

Re: New & Excited!
« Reply #3 on: April 06, 2012, 04:29:18 AM »
No, I don't take iron supplements.  I meant that my mother and I were always advised to take iron.  We learned many years ago that we were receiving bad information from doctors who did not understand.  As you know, doctors naturally assume if you are anemic you need iron and that is what they prescribe.  I take folic acid.

Re: New & Excited!
« Reply #4 on: April 06, 2012, 04:35:51 AM »
Also, I don't have a hematologist.  There aren't any in the State of Oklahoma to my knowledge.  If anyone knows of one, I would appreciate knowing where they are located.  I believe the closest hematolgist to where I live, unfortunately, is in Texas.  I may wind up having to travel to get some answers.  I am still waiting for the results of the hemoglobin electrophoresis that the cardiologist ordered.  Thanks for the advice though, but I do know not to take iron supplements based on a routine CBC.

Re: New & Excited!
« Reply #5 on: April 06, 2012, 11:55:17 PM »
Also, I don't have a hematologist.  There aren't any in the State of Oklahoma to my knowledge.  If anyone knows of one, I would appreciate knowing where they are located.  I believe the closest hematolgist to where I live, unfortunately, is in Texas.  I may wind up having to travel to get some answers.  I am still waiting for the results of the hemoglobin electrophoresis that the cardiologist ordered.  Thanks for the advice though, but I do know not to take iron supplements based on a routine CBC.
I have a friend in Oklahoma who adopted a little boy from China who has beta thal major and is transfused every 3-4 weeks. He is under the care of a hematologist.
You could contact Eileen Scott at Cooley's Anemia Foundation to see what hematologists she has the names of for Oklahoma.
Nicole
Nicoler

My son, adopted from China at age 3 in April 2010, has beta thalassemia major.

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Offline Answers4N

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Re: New & Excited!
« Reply #6 on: April 10, 2012, 09:18:24 PM »
Also, I don't have a hematologist.  There aren't any in the State of Oklahoma to my knowledge.  If anyone knows of one, I would appreciate knowing where they are located.  I believe the closest hematolgist to where I live, unfortunately, is in Texas.  I may wind up having to travel to get some answers.  I am still waiting for the results of the hemoglobin electrophoresis that the cardiologist ordered.  Thanks for the advice though, but I do know not to take iron supplements based on a routine CBC.

Hi, I just wanted to mention that there are quite a few hematologists in the state of Oklahoma. I don't know where you are located, but any larger city such as Tulsa or Oklahoma City has at least a handful of them as well as geneticists. If you have insurance you may check with them to refer you to one in your network that is located the closest to you. If you are uninsured you can run a search in Google just to get preliminary results on how many are in your area. It is much easier to find a regular hemotologist for adults than it is to find one for children. I would be happy to help you do an online search if you know of the nearest medium to large city nearest you :)

Best wishes,
Sarah

Re: New & Excited!
« Reply #7 on: April 21, 2012, 08:44:16 PM »
Interesting, Sarah.  I have done a google search several times over the last few years and tried checking for specialties and have never found a hematologist listed.  There are lots of oncologists, who I think may treat blood disorders in addition to cancer patients, but it is not their area of expertise.  I am in Oklahoma City, so I will check with my insurance company.  Thanks!

Re: New & Excited!
« Reply #8 on: April 21, 2012, 08:47:32 PM »
Also, my cardiologist confirmed that I do have beta thalassemia minor.  That is a start.  He is the first doctor I've ever been to that took enough interest to even check.  I am hopeful.  I am seeing a pain management doctor for other issues and really think my back issues, etc., are compounded by the thalassemia even though the doctors generally "poo-poo" it.  Looking forward to learning more and feeling better!

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Offline Andy Battaglia

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Re: New & Excited!
« Reply #9 on: April 21, 2012, 08:58:26 PM »
If you are having difficulty finding a thal familiar hematologist, contact Eileen at CAF. My advice is be brief and simply ask for a thal friendly doc in your area.

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.or
Andy

All we are saying is give thals a chance.

Re: New & Excited!
« Reply #10 on: April 21, 2012, 09:04:42 PM »
Thank you very much, Andy!  I will contact her.

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Offline Answers4N

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Re: New & Excited!
« Reply #11 on: April 23, 2012, 09:16:51 PM »
I just wanted to mention a few names of what appears to be just hematologists in Ok City area:

Dr. William Kern
Dr. Ron Gilcher
Dr. Nasir Bakshi
Dr. Shubham Pant
Dr. Kristin Thorp

I don't know anything about these hematologist, but they came up in the search for "Hematologist in Oklahoma City" and were not listed as being paired up with oncologists. It might be worth mentioning though that when we recently saw a geneticist for our son the Dr. mentioned that many hematologist (at least pediatric ones) are paired up with oncology naturally, because they are blood specialists and many cancers are considered disorders of the blood/bone marrow, etc.


I would definitely follow Andy's advice on the Cooley foundation contact, that way you don't go through a bunch of unknowledgable doctors trying to find one that can help you.

Best wishes, hope you are well :)

 

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