They have taken a blood sample sending off to lab. I was really unwell yesterday, slurring, high temperature,hot, sweating, balance and Co ordination was out, kept dropping things. Keep getting a twinge in my chest as well. I'm seeing doctor this afternoon. Have pain were my kidneys are to but its not constant. Any ideas anyone. I've had a blood clot as part of my Hughes history if that helps?
Thanks appreciate some advice.
Thanks Andrea x
Hello Andrea
Thank you for your post.
Your INR level of 5.8 is rather high, most APS patients tend to have a target range of 3.0 to 4.0. INR means International Normalised Ratio and basically the higher the number the longer your blood takes to clot.
The slurring, balance and coordination problems are common symptoms in APS.
Please discuss all of these with your doctor, this afternoon, and do let us know how you get on.
Best wishes.
Dave
Thank you. My dose of warfrin is only 5mg per day so don't think that's a high dose. I will discuss with doctor this afternoon.
Hi Hun
Hope all goes well with gp this afternoon, 5mg not high dose but we're all different so drugs like warfarin have very varied responses.
Gentle hugs love Sheena xxxx 
Hi, spoke to doctor he agreed not a high dose of warfrin and having INR at 5.8 is extremely high. I told about problems yesterday, felt like drunk slurred speech and high temperature and feeling hot and fatigue. He is sending g me to a stroke clinic to oz as it could have been TIA whatever that is. Just to be on safe side. Doctor ringing later about dose for warfrin. Not sure how they bring levels down.? Thank for all your advice.
Hi hon,
TIA transient ischemic attack, or a mini stroke, were a small area of the brain has had a temporary lack of blood supply, is good that your doc is sending you to be checked! Hopefully your doc will lower your warfarin dose then recheck Inr in a few days!
Gentle hugs love Sheena xxxx
An INR is quite high, most of us are told to stay between 3.0 and 4.0. Even though your warfarin dose is low it all depends how your body metabolises drugs, we all need differing amounts.
The drs can inject vitamin K if they want to bring INR down.
Have you drunk cranberry juice or taken any anti inflammatorys as they can push INR up.
Personally if I feel mine is too high (I self test) I just eat a few heads of broccoli and that reduces it by morning.
You sound like you have a very good Doctor. If it happens again I expect they will tell you to go to Hospital. Not driving yourself ? By Ambulance I would ask if you haven't already
Hope you are feeling better today
5.8 is too high. Mine is 3.0-4.0 but after I had a stomach bug it jumped up to 6.8! Apparently because I wasn't eating so it wasn't absorbed. But I also find alcohol, change of diet, being on holiday, changing medication can affect it. Your doctor or clinic will readjust your dose.
Will be interested to hear how you get on at stroke clinic. I had all the signs of a TIA this time last year but nothing showed up.
Good luck x
Hi all,
Right, I arrived hope couple hours ago from stroke clinic after being up there 4 hour. The stroke consultant. I don't know what they call consultants in stroke unit. He was very informative he did loads of Co ordination tests, check reflexes, eye movement, used a vibration thing to see if I could feel it. He asked me about my bad day as I had said. What was really good is he understood a bit about Lupus. As his sister in Ghana has Lupus he did share a story with me about before his sister was diagnosed , and he was a doctor. She told him for years all her symptoms. He isn't a specialist in Lupus and for years he told his sister she didn't have anything wrong. He said he had to eat his word when she was diagnosed. He said his sister is blind in one eye and other eye not good as the immune system went on its attack. He said he now looks after his sister and she just about forgives him. His point was no Lupus sufferer is the same and the symptoms are so varied its like wolf in sheep's clothing it mimic lots of illnesses. He was very polite and said that he didn't think it was a mini stroke but to be safe sent me for an MRI on the brain to check brain functioning well and no problems He made me an appointment a few hours later. I was so tired I just dosed in a chair in MRI unit. The MRI was loud, noisy and vibrated. I had bit of bad head after. The doctor said he will contact me tomorrow or Friday he thinks be OK. He thinks just a bad day with Lupus Hughes etc. He advised me to get to see right consultant and try to find my way to manage it with right treatment. He advised me on good days to do as many normally daily routines. Bad days lots of rest.
I await his call. My doctors surgery have rang and put me on 5mg a day till next INR test. I didn't take anything last night coz I didn't get call from doctor to advise dose. I thought if I don't take it my help reduce INR so start on 5mg tonight. I am awaiting blood test to oz or Friday see if anything wrong with blood etc. So waiting game. I also got email from PALs which is a patient liaison team at local hospital about Dr S misdiagnosed and discharge of care and his attitude and formal letter towards me which has delayed care. They want to send Dr S my letter and arrange a meeting with him. I will do it if only he changes his attitude and thinks about other patients in his care and how his attitude needs to change a bit. I don't want to sue just want him to listen. I never want to see him again. He needs constructive criticism.He made me feel it was all in my head and even with evidence in front of him he told me had not got Hughes or Lupus and then was diagnosed with both those illnesses by hematology two months later. He has put some real rubbish in his letter. Basically in a polite way nothing wrong with me and I was wasting his time as apparently I was unremarkabley well and was recovering well. I told him all my symptoms and i was in pain. He was rude, condescending and treated me like a idiot.
Got to open the eyes of these people who think they are god. He has delayed my treatment I am waiting to see my doctor for another referral which take months. Its just annoying.
Hope your all OK out there?
Thanks for listening to my waffle.
Andrea x
Hi there, if you go for this meeting take somebody with you, somebody professional who you trust, to be there for you and also as witness, I did this once when I went to see a particularly unprofessional CEO of a PCT and her barrage of medical advisers - I was fine, but glad I had taken somebody with me, who like myself did not mince words! Mary F x
Ye might take my mum or someone who is on the ball. I don't want more stress and hassle. What happens in these meetings? Is it all against patient and attack patient. I can't cope with anymore knocks? Fragile just want friendly chat.
Thanks Mary
Ye I agree I was debating whether to complain but think it right thing to do. I'm worried and don't need stress but do need to make him aware of his attitude. I don't want to attack him. I want him to listen to his patients and not dismiss that anything is possible. Better patient liaison. I don't want to see him again. I might take my brother as he very clever with words and diplomatic and very on the ball. He knows exactly how unwell I have been. So mum and brother it is. My mum good observer and listener. I wouldn't take my dad as he not diplomatic and probably hit the man lol I don't agree with violence at all I think things can be sorted and resolved in a diplomatic way. Oh well role on appointment.
He might actually refuse to see me. But olive branch has been given to him.
Watch this space.
Andrea x
How I know that my blood is thick!
Why is my INR so low?
What are your symptoms when your INR is high?
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