What do you say?! : I just met with a... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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What do you say?!

TxMama79 profile image
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I just met with a hematologist. While he listened, he basically chalked up my fatigue to Fibromyalgia. I got him to run additional thyroid tests (tsh 4 and tsh 3) and the lupus anticoagulant test. I don’t think this is Fibromyalgia exhaustion—it’s different than what I’ve had before. Should I’ve asked for other tests?

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TxMama79 profile image
TxMama79
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TxMama79 profile image
TxMama79

Thank you. He is testing for the Lupus coagulant to determine if I need a blood thinner.

What is Ferritin? I take Vit D, Folate & B12 supplements now. So far no sjogrens diagnosis.

Thanks again!!

HollyHeski profile image
HollyHeskiAdministrator in reply toTxMama79

Hi, Ferritin is the protein that stores the iron.

Is the B12 new? B12 defiency can cause the fatigue you describe.

Hope you get your answers soon xx

KellyInTexas profile image
KellyInTexasAdministrator

I’m sure she means he’s testing her for APS in general. It’s so annoying. My Texas heme calls Hughes Syndrome “Lupus Anticoagulant.”

Confuses me to no end.

I finally asked him to clarify. He kept telling me I had “ Lupus Anticoagulant.” ( “was “Lupus Anticoagulant?”) To my mind that meant perhaps I had picked up the third antibody and would explain why my INR was so damned labile. But how? How did he test it?!? I was onnwarfarin? I was utterly baffled...

He looked at me when I posed these questions as if I had just completely lost my mind. Or I was just plain stupid.

“ A.P.L.S.” A.P.S.” “L.A. “

All the same, he said very slowly, as if I were deaf.

I had to remind him my first experience with proper treatment and education / language was in London. I learned it all there. I still say Fragmin for all of it. I still say ,” do I need to inject with heparin?”

You should watch the nurses here have fits. “ you never inject with heparin! That’s only IV!!!!! “

TxMama79 profile image
TxMama79

To be honest, I wondered the same thing, but I do think he meant APS. We'll see I guess. :)

KellyInTexas profile image
KellyInTexasAdministrator in reply toTxMama79

Yes. It’s my guess as well. You will find Texas can be so ,” ass backwards “ the Brits can’t even understand the language our doctors use. As highlighted by the conversation APSnotFab and I are currently having regarding “ Heparins”

Oh god forbid I try to make that one plural like that here in Texas!

However- I do have a few good docs here. A great vascular surgeon- and in some ways, believe it or not- my heme is pretty good. Some ways- not all. He’s flexible now that I’ve proven- by going out on a limb on my own- risk taken ON MY OWN EDUCATED TERMS- I’m not going to bleed- he’s flexible and reasonable.

KellyInTexas profile image
KellyInTexasAdministrator

They tell me, “ you can not call it Heparin. It’s not Heparin . It’s LOW WEIGHT MOLECULAR HEPARIN.” Not the same thing. AT All. You must call it exoxaprin. “

“An injection of EXOXAPARIN.”

It’s not the route of delivery they are contesting. It’s the use of the word “ Heparin “.

KellyInTexas profile image
KellyInTexasAdministrator in reply toKellyInTexas

Lynn- this is for you- sorry. Not “box specific.”

KellyInTexas profile image
KellyInTexasAdministrator in reply toKellyInTexas

I also lived in Finland and taught English for a brief stent. As a student there, I had to take “ English.” Oxford English. As a Texan - quite humorous. I actually speak “the queens english” albeit with a very faint Finnish accent if you strain hard enough to hear it! I was not allowed to open my mouth to teach until I passed my 82 year old Finnish instructors oral exam. How funny is that story? Oxford English is second nature to me as I am bidialectic.

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