Good news is on Tuesday I finally got me new home monitor for my INR living with out it the last two years has been a disaster! Also, I went to the Hospital for my new symptoms previously discussed: where I fine then suddenly horrifyingly dizzy and have only a few seconds to get my self down safe b4 I fall down because one side or the other is not going to be capable of holding me up as I loose the strength! Then I spend a few minutes so dizzy I can't keep my eyes open. Mostly I'm have an altered mental state, can't get my words straight sometime I almost pass out its like everything is dem and I can't get words straight. Well I went to the ER and other then a CT of brain that of course did not show anything and all symptoms were gone prior to reaching ER. They took some blood, my INR level was 4.3. (I have 6 different clotting dissorders and a DNA mutation so a low INR level is not necessary for me to clot) Well they had nothing to say. They had no clue and only considered that I might have developed epilepsy of some sort. They sent me home! This is y I don't go. They don't do anything. I have read up on what they should do if suspecting stroke or TIA in brain stem they did not do ANYTHING. But both me and my daughter who took me came down with a nasty cold a few days later! That is why I do not go to ER they don't do anything. But look at me with a mix of disbelief and pity. Everyone says go to the Hospital, call an ambulance but it kinda just ruins my whole day. Which is basically ruined evacuate I can't think proper afterwords. Any suggestions? Nobody outside of my mom, husband and daughters, seems to understand that every time I have an episode I am loosing a part of me. Or maybe they just don't care! One good thing is the few times I have gone I have been able to educate dr's & nurses on APS.
Hello all, Sould Rebel here. - Hughes Syndrome A...
Hello all, Sould Rebel here.
Hi again,
I know I have a bad memory but we are many here; I wonder what does your Specialist of HS/APS say about this?
You say the hospital took your INR and it was 4.3! Was it taken in the vein or in the finger?
Are you triple-positive? Who has helped you with the CoaguChek machine? Your Specialist or your GP?
You must find out if there is a difference between the vein-test and the fingerpricktest. Also get enough of teststrips and LMW Heparin-shot to take when the INR is under your therapeutic level. What is your therapeutic range set by your Specialist?
Kerstin
Sadly I don't have a specialist just a diagnostic hemotalogst that specializes in oncology and it a 8 hour found trip from my home. My PCP worked to get me my INR machine I haven't had a chance to test it against a vein-test. Yes I am triple positive plus I have a few other clotting disorders and some kind of DNA mutation. I can't find a specialist in my area so I am going to see if I can find one that is somewhat near my sisters home in Texas. Maybe I can visit her an she can take me to see a dr. She has Lupus and Sjögren's syndrome, I'm pretty sure I have Sjögren's and another autoimmune disorder just don't know which one. I feel if I could get everything diagnosed and treated then I would have better control over my HS. I do plan to go to the lab this week if possible and check the finger test vs vein-test. I know if I have the Lupus anticoagulant then you can have different readings. Is it almost always the same amount off? Like if I went today and had a .9 difference in the two vein being higher would I always add .9 to my finger stick results.
I thank you for your patience with me.
Steph
Hi, just read your post and totally understand where you are coming from. Ive spent hours in A & E, with no tests coming back with info! To the point they are too frightened to let me go home but dumped me on a ward, with no help, withheld my drugs, as a doctor has not written up! Ive discharged myself at this point.....
Can you speak to your specialist?
Can you try heprin/clexane injections?
My empathy is with you, keep fighting, keep trying to get quality of life xx
That's what I am missing right now is the quality! Since I am always exhausted I don't go out much and don't do much with my family either. It's like we all live here but have different schedules. Because if the pain I can't sleep past 4:30 and my daughters work early shifts so by the time they get home (btwn 11/2) I'm ready for a nap and lately I haven't been getting up until they wake me for dinner and meds. Then I crash out again. I to almost walked out last time I was admitted because my INR was 1.5 and I need to be 3.3/4.3 & of course they would not give me any blood thinners so the nurse did a rush checkout as they caught me at the elevator leaving. I told them I needed to get home to take my meds!! They do not understand. Nobody but u guys can understand.
Hi again,
I also have my drugs with me (at least exstra for one day and a Fragmin-shot) if something suddenly happens and I can not get home in time.
When I , as an example, go for a Consert or the Theatre and it is time for my Warfarin and the other 4 tablets in the evening, I have them with me.
Have you told me if you are Lupus Anticoagulant positive and do you have all three antibodies positive with high titres?
If so it can be more difficult to selftest and you must do more double-testing before you know the difference.
If you say as an example, you have a difference of 0,9 and the machine-value (fingerprick-value) is 0,9 INR HIGHER than the veinvalue (I think that is the most common but I do not know for sure). At least most people here have a bigger fingerprick(machine)-value and so do I also. For me if the INR is high the difference can be bigger.
If so you must, to get a proper value, REDUCE the fingerprick(machine)-value with 0.9 to get your real INR-value. As you understand now that this can take som time to confirm and during that time you have to doubletest at the lab several times to get a proper vein-value. We are all different even if we have the same illness.
I take a test with my machine at home and go to the hospital-lab and take a test within a couple of hours. I get the answer in the afternoon form a nurse I know and I always write my numbers down. That is very important to make protokol. Nowadays I handle it mostly by myself and do not have to doubletest more that perhaps every second or third month.
As you do not know your body well yet, I suggest you ask for a Fragmin-shot to take when the INR is under an INR of 3.0 (Then your machine-value probably is higher and that is what you must find out). If we for instance say that your machine-value is 3.9 and you have a difference of 0,9 then the real vein-value should be 3.0 and you need a Fragminshot. This was only an EXAMPLE. Do not forget to make notes for every day.
Hope this has helped a bit.
Kerstin
That is just what I needed. Thank you so much. I will double test tomorrow 1 home & 1 lab start checking for the difference. Yes I do have all 3 high Torres. Plus I have issues with my protein s & protein c and homosesten level(or hemosisten not really sure which) also some form of DNA mutation that also results in blood clotting! Fun, fun fun! I will talk to my dr about fragmin. Also I've been on blood thinners for so long my dr just has me adjust warfarin as needed on my own. But I can always call her cell phone and get her opinion. She figures I know my body but she is there when I need her, she just my PCP.
Thank you for all of your good advise!
I hope you will not skip Warfarin but take Fragmin-shot when the INR is not in its normal therapeutic range.
You know that you must eat the same green vegetables every day and the same amount of them and that is also for the different drugs. CONSTANCY is the key.
Make notes every day about how you feel (APS-symptoms), INR, drugs (especially if new and you do not take them every day as then it can be difficult to keep the INR in place). Even exercise can make a difference and virus etc.
Then you will learn when you can recall what has happened as our memory is not so very good nowadays.
Good Luck
Kerstin
Oh Steph...
I hear ya. Our poor administrators really don't understand how totally alone we are in the United States without any true help! Our administrators and other sage members here ARE our life line save a few gems of docs we got lucky enough to stumble onto.
"Do you have an APS specialist? It's very important you have one."
Yes! It is! And no, they don't really exist and when they do, ( there are only about three true specialists - only one true Hughes specialist in the USA - she is in Centennial Colorado- I see her in July 2018 - she is booked 14 months out.) they think in opposition to Professor Hughes. There is an underlying tension of professional tight lipped eye averting throat clearing " moving along to the next sentence" sort of thing , or more straightforwardly, if they are really brazen and sure of their arrogance, they will straight out say, " Dr Hughes has widened his funnel too wide with regards to his funnel of APS symptomatic criteria and that was decided upon in the revised Sidney diagnostic criteria. "
I was hospitalized with my second DVT last week and chose to try my local small hospital. Big mistake. Long sorted story. Bottom line, a hematologist was never consulted and the hospitalist was ready to lower my anticoagulant with an active clot - with my INR of 1.9 and dropping. Horrible migraine. "Migraines are not a part of APS" He said. I told him Dr Hughes had set my INR at 3.5, and yes, migraine was a associated with Hughes syndrome.
He asked me who Dr Hughes was, and if Dr Hughes was one of my local doctors...
We are in Serious trouble here...
I'm in Texas, an hour north west of San Antonio I can't tell you it's great, but I have a decent hematologist. He has "working knowledge " of the antiphospholipid syndrome. He works with lupus patients who clot.
He's not afraid to get aggressive with my INR. He listens. He's about 65.
Dr Joseph Holehan.
You have now got a name from Kelly in Texas , of a Doctor who listens, a Hematologist one hour north west of San Antonio. Perhaps both you and your sister could go to him. Dr Joseph Holehan. Hope he will take you!
Are you going to get a CoaguChek XS from Roche as most of us here use?
No, the difference is not always the same (that is also individual) If the iNR is very high one day the difference between the fingerprick and the vein-value is bigger. For me the vein-value is always higher than on the CoaguChek-machine. It can be a difference of 0,8 - 1,1 perhaps.
Good luck to find a Doctor and also good luck with the new Machine!
Kerstin
Yes maybe it's only a 9 hour drive, each way so would have to drive for 18 hours plus wait time. But might be what I have to do.
Yes it is the coagucheck XS from Roche
So how often did u do both coag check at home and vein-test at lab?
To begin with I did it perhaps every second week (I do not remember exactly how often it was) at the hospital-lab but it took about half a year before we had enough tests to see how big difference it was if there was a difference which it was for me.
Kerstin
Wow ok I didn't think it would take so long and so many tears so thank you. I obviously want to get this right! I really appreciate the way everyone here freely gives person experiences to help lead the rest of us in the right direction! 😊
Barbara is his Scheduling nurse, she requires records and a referral. Her direct line is (210) 593-2691
Thank you Kelly!
Where do you live, New Mexico?
Yes in Roswell.
We have a place in Alto, NM. We are there quite often. We take highway 70 on up the mountain in Roswell. ( the shortcut- trucking route by all the airplanes where the flight training happens. )
I have the coagu check xs also. I am always 2/10ths of a point higher on the coagu check ( capillary blood ) than a vein value. Always. No matter the hospital , even in England at London Bridge Lupus center.
Dr Holahan let's me check at home and call the INR in from home. I let Belia ( his RN, different one from Barbara but same phone number) know and she checks with him.
