Sticky Blood-Hughes Syndrome Support

What type of doctors do u see?


I was wondering what type of specialist do you all see? I have a wonderful pulmonary doctor that monitors my inr and warfarin. I really liked the hematologist, but I only seen him once. It looks like the doctor I see the most is the one I like the least and that is the rheumatologist. I really would like to go back to the hematologist, but maybe he can't help me. Please let me know what type of specialists are in your lives and what they do for you.

Thanks for all your help!!

11 Replies

I have been on warfarin for 12 years, my management is with my local GP



I am followed by a Neurologist and a Hematologist. They are both wonderful. I haven't had much luck with Rheumatologists, which is odd to me. I figured they would be the most knowledgeable/understanding of the bunch since they are most familiar with Lupus. I have seen 3 and hated them all, so I stick with my Neuro and Hemo.


I have been all over the Country and seen the very best and the very bad thank God for Dr G Hughes at St Thoms after 17 years he DX me i now see my G.P monthly and have my I.N.R done weekly with the District Nurse


I also believe I am alive and healthy because of Dr, Hughes.....I was 61 yrs old when diagnosed and on my way to gave a a paternal grandmother had one at other medical issues and ended up w/ dementia etc. etc.


Hi Luisa

I was told it was all in my mind i had lesions in my brain with multiple Tia's the damage was done way before i saw Dr G Hughes i am now 56 we are survivors


In this area of the US there is a Lyme Disease epidemic.......also I was told I tested +for Lyme....Dr, Gaito ( My Reumatologist) is a specialist in I made the long trip to see her....she was able to r/o Lyme.(but says a major stressor like Lyme can trigger an autoimmune response if someone is genetically predisposed)...but because she treats the whole person she also tested me for ASP...I had never even considered an auto-immune disorder....she says Autoimmune Disorders are one of the the most undiagnosed disorders in the US.....When it comes to young women w/ miscarriages ASP is overlooked and they are instead treated w/ fertility meds....and we all know the risks of this.....


I had Lyme disease when I was in middle school, thanks for the knowledge. :)


I suggest you check out

International Lyme and Associated Diseases Society......Andrea Gaito MD

is involved


Hi there

I see the haemotologist once a month for the INR test and consultation


I see the rheumatologist every 3 months, he orders blood and urine tests and monitors them.

I think the haemotologist is heavily involved specifically with the blood, but the rheumatologist has a look at the "whole" person.

Hope this helps



I live in the US and finally found a doctor found out why I felt so ill .

Rheumatologist ( and I travel 2 hours to get to her as no MD in my area know anything about treating ASP)....she takes a blood sample every 3 months to check my blood....


Thank you everyone. I will probably call the hematologist and see if he can be my treating doctor for ASP.

I'm sure glad I found all of you, I really need u all in my life.

Thanks again, happy holidays.



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