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Jillybean28
LIF Adult
Member since 1/06 1018 total posts
Name:
Jill
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Hughes Syndrome, anyone else heard of this?
This is my first post!!!!! I have been trying for about a year and a half and suffered 3 miscarriages. My doctors finally performed some more tests and it turns out that I have Hughes Syndrome, which is a blood abnormality. It causes blood clots and can prevent the placenta(? sorry bad speller) from getting the blood and nutrients to the baby, causing miscarriage. I'm writing because it is pretty rare, but accounts for mulitple miscarriages and I wouldn't want anyone to have this and suffer loss after loss like myself. Hope this helps, their is a great website with symptoms and information, bbc.co.uk search under health.
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Posted 1/30/06 11:31 PM  |
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LisaW
Time for me to FLY!
Member since 5/05 13199 total posts
Name:
Did I ever tell you that I hate people?
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Re: Hughes Syndrome, anyone else heard of this?
Yes, thats APS. I think quite a few of us have immune issues.
I am ACA+, and homozygous MTHFR, so I take Folgard, baby aspirin, and heparin.
Good luck to you!
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| Posted 1/31/06 9:09 AM |
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redstar
Delay is not denial
Member since 5/05 2220 total posts
Name:
Michelle
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Re: Hughes Syndrome, anyone else heard of this?
It's actually not that rare. Thank goodness some doctors are finally testing women before they have recurrent miscarriages, for these antibodies/immune issues. Not only can these issues cause miscarriage, it can also prevent implantation.
I have positive ATA, and ANA with LAC...currently I am taking folgard, prednisone, and baby asprin. I am waiting for more blood test results to see what other treatment may be necessary.
I recommend reading the book Preventing Miscarriage - The Good News, Jonathon Scher, M.D, and Carol Dix. Dr. Scher just published a new version Sept 05. I had a consult with Dr. Scher, last week and he was wonderful.
If you go to www.ivfconnections.com and read up on the immune issues board, you will find tons of information.
Message edited 2/2/2006 6:04:09 PM.
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| Posted 1/31/06 9:32 AM |
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Jillybean28
LIF Adult
Member since 1/06 1018 total posts
Name:
Jill
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Re: Hughes Syndrome, anyone else heard of this?
Thank you Redstar and Lisa W for your insight, it made me feel a lot better to know that I am not alone in this baby making struggle. I wish you both the best of luck and my hopes and prayers go out to you. 
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| Posted 2/2/06 5:08 PM |
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michele31
LIF Adult
Member since 5/05 3372 total posts
Name:
Michele
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Re: Hughes Syndrome, anyone else heard of this?
I was going to ask if you see a specialist? Maybe they would be able to help you further.
Good Luck.
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| Posted 2/3/06 2:44 PM |
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Jillybean28
LIF Adult
Member since 1/06 1018 total posts
Name:
Jill
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Re: Hughes Syndrome, anyone else heard of this?
Well I jusy found out on Friday (of last week) and my obgyn wants to schedule me for a hsg test. I feel that I want to get a second opinion and quite frankly, I think that this is out of the relm of my current doctor's specialties. I've been activly trying for a year and a half, suffered three miscarriages( been off birth control for two and half years) I don't want to over react but, I think their are problems and I want to see a specialist, any suggestions? 
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| Posted 2/3/06 2:52 PM |
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MrsJ
I love my Katie Bug
Member since 5/05 11357 total posts
Name:
Kathy
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Re: Hughes Syndrome, anyone else heard of this?
YES my friend has this.
She lost 2 pregnancies to m/c before she was diagnosed with this.
Now, she has 4 healthy children. She did have to give herself daily injections throughout every pregnancy, but she said it really wasnt that bad and she was used to it.
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| Posted 2/3/06 3:21 PM |
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redstar
Delay is not denial
Member since 5/05 2220 total posts
Name:
Michelle
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Re: Hughes Syndrome, anyone else heard of this?
Posted by Jillybean28
Well I jusy found out on Friday (of last week) and my obgyn wants to schedule me for a hsg test. I feel that I want to get a second opinion and quite frankly, I think that this is out of the relm of my current doctor's specialties. I've been activly trying for a year and a half, suffered three miscarriages( been off birth control for two and half years) I don't want to over react but, I think their are problems and I want to see a specialist, any suggestions?
You will find a lot of reproductive endocrinologists and most ob/gyns will not take miscarriages that seriously. Many of them are not knowledgeable in reproductive immunology. There are a handful of amazing doctors out there who specialize in this area. Dr. Alan Beer in California is one of them. However, locally we have Dr. Jonathon Scher and Dr. Geoffrey Sher from the Sher Institute of Reproductive Medicine. Unfortunately, when you find a doctor who has dedicated his/her time to reproductive immunology, he/she usually doesn't take insurance. Acupuncture/herbs also can help but once again,...it is not covered by insurance. You may need to make an appointment with a rheumatologist or hematologist...
In my above post, I listed a book written by Dr. Jonathon Scher. You can order it from www.barnesandnoble.com. Dr. Scher is supposed to appear on a long island cable show but I am not sure when. I am going to see him next Friday...so, if I have any more information then, I will share.
Message edited 2/3/2006 3:40:28 PM.
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| Posted 2/3/06 3:38 PM |
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jennifaaaa
Live..Love..Laugh!
Member since 5/05 1207 total posts
Name:
Jenn
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Re: Hughes Syndrome, anyone else heard of this?
I can not believe this is not as known as it should be. I just found out from my doctor I have this syndrome and it was the reason I miscarried.
I spoke to 2 of my friends last night and they were also diagnosed with Hughes Syndrome in the past 2 years.
How many more of us on this board know about this and /or have it?
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| Posted 8/9/06 12:13 PM |
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DRMom
Two in Blue
Member since 5/05 20223 total posts
Name:
Melissa
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Re: Hughes Syndrome, anyone else heard of this?
Posted by jennifaaaa
I can not believe this is not as known as it should be. I just found out from my doctor I have this syndrome and it was the reason I miscarried.
I spoke to 2 of my friends last night and they were also diagnosed with Hughes Syndrome in the past 2 years.
How many more of us on this board know about this and /or have it?
I have a similar history(not diagnosed with Hughes but going to be tested among other things. I just hate the fact that someone could have 2 or 3 M/C without any Dr telling you that this could be a possible cause and it seems like such an easy fix. Ughh so frustrating how insurance runs our healthcare!
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| Posted 8/9/06 1:35 PM |
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