Can Anyone suggset ANy Good Adult Thal Doctors?

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Can Anyone suggset ANy Good Adult Thal Doctors?
« on: October 14, 2006, 05:11:08 PM »
Hello Everyone,

Can anyone suggest any good, kind, reasonable, helpful thal doctors who are good at diagnosing Thal Minor in Adults.

I am very iron deficient...but iron makes me sick.

So, I need a honest doctor in Boston or someplace close to Western Massachusetts.

But, anywhere is fine if none are in my area.

Plus...is anyone familiar with sickle cell trait thrown into the picture?

-Night

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Offline Andy Battaglia

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Re: Can Anyone suggset ANy Good Adult Thal Doctors?
« Reply #1 on: October 14, 2006, 05:27:37 PM »
Hi,

Please call this hospital.

Children’s Hospital of Boston
Boston, MA
617-355-6000
617-355-0443 (TTY)

Ellis Neufeld, MD
Phone: 617-919-2139
Fax: 617-730-0641
http://children.photobooks.com/directory/profile.asp?dbase=main&setsize=5&last=Neufeld&sear

I know this is the Children's hospital, but it is the best place to ask for a referral. They may wish to see you there, as adults thals are still treated in children's hospitals in most areas. If not, they should be able to direct you to a thal famliar hematologist in the Boston area.

Explain that you also have the sickle cell gene and that your situation is not quite the same as one who is thal minor only. The sickle cell gene can cause many problems when combined with the beta thal gene, even to the point of being a sickle cell thal which can have very severe consequences (yours is apparently not so severe but it may be adding to your troubles).

How do you know you are iron deficient? Have serum ferritin tests confirmed this or is it based on a doctor's observation of your symptoms. This is the most common misdiagnosis when one has thal minor so it should always be verified by serum ferritin testing. If you are indeed iron deficient, it is much easier on your digestive system if you correct it with diet rather than iron supplements. Do not take iron pills if you are not absolutely positive that you are deficeint.
Andy

All we are saying is give thals a chance.

Re: Can Anyone suggset ANy Good Adult Thal Doctors?
« Reply #2 on: October 16, 2006, 07:36:11 PM »
Hello Andy,

Thank you for the informative reply.
I have been communicating with Dr. Neufeld and am trying to nail down the best doctor to see at Children's Hospital in Boston.
And, yes, I am iron deficient according to serum/ferritin/TIBC tests and the like.
The problem, one of many, is food. Meat in major doses daily (pounds) has not helped in the past rather quite the opposite.
Now most meat and food in general just makes me ill or rather something else is going on to make me not tolerate food. So, I have been avoiding it ... although  I have been trying to eat a lot more for the past two weeks. I still get woozy and have to lie down.
But, my situation with doctors is that I go to see them and then they won't do tests or refer me or try to figure things out. Any feedback as to how to get them to do it right the first time?

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Offline Bostonian_04

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Re: Can Anyone suggset ANy Good Adult Thal Doctors?
« Reply #3 on: October 16, 2006, 07:55:51 PM »
Hi,

You might try consulting with Dr. Deborah Chirnomas at Boston Children's. She is also taking on the responsibility of treating Thal patients at the hospital along with Dr. Neufeld. Her contact details are as follows:

Deborah Chirnomas, MD
Dana-Farber Cancer Institute
Pediatric Oncology
44 Binney Street
Boston, MA  02115
Phone: (617) 632-4882

http://children.photobooks.com/directory/profile.asp?dbase=main&setsize=5&last=chirnomas&searchButton.x=0&searchButton.y=0&pict_id=6094018

You might even try talking with the Thalassemia NP at CHOB - Jennifer Braunstein, Ph - 617 355 2457

Take care,

Bostonian
Quis custodiet ipsos custodes ? - Plato

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Offline Andy Battaglia

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Re: Can Anyone suggset ANy Good Adult Thal Doctors?
« Reply #4 on: October 17, 2006, 02:50:49 AM »
Hello Night,

Have you been checked for intestinal problems, such as Crohn's disease or celiac disease, which affect your intestine's ability to absorb nutrients from digested food? These are both known causes of iron deficiency that don't respond with iron supplements, and also can adversely affect the appetite. Iron deficiency can also affect appetite but the high iron diet's inability to correct the problem suggests its more than just iron deficiency.

Investigation into why you are not absorbing iron is indicated, and intestinal disorders should be considered as possible causes.
Andy

All we are saying is give thals a chance.

Re: Can Anyone suggset ANy Good Adult Thal Doctors?
« Reply #5 on: October 18, 2006, 08:49:54 PM »
Thanks Bostonian and Andy,

Bostonian-- I have not contacted Deborah Chirnomas. Dr. Neufled referred me to a Dr. Maureen Okam. Anyone heard of her? Any feedback about her? She is at Dana Farber Cancer Institute.

Andy-- I have had an upper GI biospy-normal..no celiac and etc. and sent in stool sample and have heard nothing back so I assume it to be fine...I am tired of having to "followup" with these doctors...the hematologist I last saw ...lets say "dragging his feet" was is an  understatement. His lack of effort costs me tests and appointments I should have had done at Mayo. I was there for a limited time which I told him. But, he did not want to see me after the first visit until the day before I was scheduled to leave!

This is serious and the hematologists I have seen refuse to do anything that makes sense..like comprehensively ruling out all blood loss...or listening to me tell them that GI and Gyn have already been checked. So it would make sense for them to do other testing...they just keep giving me the run around or hope I will go away.

Re: Can Anyone suggset ANy Good Adult Thal Doctors?
« Reply #6 on: October 18, 2006, 09:13:26 PM »
Bostonian and Andy,

Funny, my first post did not include everything I had written...here it is.

Bostonian-- I have not contacted Deborah Chirnomas. Dr. Neufled referred me to a Dr. Maureen Okam. Anyone heard of her? Any feedback about her? She is at Dana Farber Cancer Institute. I was told she specializes in Sickle Cell and Thalassemia.

Andy-- I have had an upper GI biospy-normal..no celiac and etc. and sent in stool sample and have heard nothing back so I assume it to be fine...I am tired of having to "followup" with these doctors...the hematologist I last saw ...lets say "dragging his feet"  is an understatement. His lack of effort costs me tests and appointments I should have had done at Mayo. I was there for a limited time which I told him. But, he did not want to see me after the first visit until the day before I was scheduled to leave! And, other persons there I asked to follow-up with me have not to date. So much for the world renown Mayo. Funny as I was there one day...I read an article in Readers Digest ( I love this magazine) about this woman who spent over 10 years gaining weight and gaining even more...and doctors just said oh all your problems are due to your obesity! She went to Mayo and they said oh you are Obese. As a last effort she went to another doctor who said "You have 'Cushing's Syndrome'" !

This is serious and the hematologists I have seen refuse to do anything that makes sense..like comprehensively ruling out all blood loss...or listening to me tell them that GI and Gyn have already been checked. So it would make sense for them to do other testing...they just keep giving me the run around or hope I will go away.

Don't mind the venting. I have been ill too long and know how one has to fight for quality healthcare.

Please give me any warnings or heads up concerning doctors and what to look out for or better doctors to see!

-Night

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Offline KHALIFA

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Re: Can Anyone suggset ANy Good Adult Thal Doctors?
« Reply #7 on: October 19, 2006, 10:43:00 PM »
HI night
            welcome to your site .. first ful am wondaring from your question you are in USA and you ask for good hospital ...any way am just before 4 month ago i came from italy from PROF.LEUGARALLY and his team i made a PREPHERAL BLOOD STEM CELLS for my son if you want you can contact the Dr. whos treat my son her name PAOLA POLCHI  her e-mail : ppolchi@hotmail.com
                                      hope i help  :flowers
                           
                                   khalifa
                             state of kuwait 
RED_PILOT

 

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