What do you say?!

[TxMama79]

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?

[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 Administrator in reply to TxMama79]

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 Administrator]

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]

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

[KellyInTexas Administrator in reply to TxMama79]

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 Administrator]

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 Administrator in reply to KellyInTexas]

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

[KellyInTexas Administrator in reply to KellyInTexas]

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.