Since awful brain fog Monday and inr it two I have been feeling awful. As haemo suggested u called GP to get blood test done same time as coagucheck. GP not helpful
Gave to go yo hodital Friday
GP not interested in me feeling rotten
I am all foggy and numb lip
What whall I do
Emergency doctor?
Hi
What is your target INR? An INR of 2.0 would be way too low for most people on here who take Warfarin for APS.
When I was on Warfarin (now on Fragmin) my target INR was 4.00. If it dropped below 3.3 I would start to get bad symptoms, migraine, brain fog, speech difficulties, balance problems, numbness etc. I used to keep some 5,000IU Fragmin shots to use until my INR got back on target.
If your GP is not supporting you then you may need to change GPs. It would not hurt to get a lab INR test done at the same time as a CoaguChek test, to see if your machine is reading correctly. I had to do this for a long period, around three months, after heart surgery, when my machine was giving false high readings.
Where are you from? You need to be under the care of an APS experienced consultant. Please see this link, for the details of such consultants in the UK:
hughes-syndrome.org/self-he...
Let us know how you get on.
Dave
I understand you have been to prof Hunt. I have heard only positive things about that Doctor. But as I understand you GP will not follow in her footsteps.
As I live in Sweden I am not the best person to tell you what to do but if I were in your shoes perhaps i would call prof Hunt and tell her about your situation.
You need to be well and properly anticoagulated to feel well. You also have symptoms from APS now. Did you also have a hematolog to call?
I Think that they can not deny you to do a blood INR test, can they?
Sorry I can not help you further but I wish you good luck all the same .....
Kerstin
God. I wasn't at all well earlier when I wrote that. I was trying to say my inr had dropped to 2 and my haematologist at kings had said the GP should do proper bloods to compare with the coagucheck. I called the GP today who weren't helpful.
Teatime, my lip went numb and I lost my speech. My partner called 111 who sent an ambulance and I got taken to hospital in case of stroke/TIA. Actually saw a very good Dr who knew about APS and suggested this plan for the future.
Get kings haemo to suggest a haemo nearer to my current address (I left South London 2 years ago) that haemo can then monitor me, should switch my anticiaguiation away from GP to the hospital warfarin clinic.
So that is what I will do.
My inr should be 3-4
Sorry you felt so awful must have been really frightening, I would phone an ambulance if I felt like that, or get someone to take me to the nearest hospital
I am seen by the Doctors at St Thomas's I test my blood with a coagucheck machine it's brilliant.
I test when the local anticoagulant clinic tell me too about every one / two weeks depending on the previous results
They then advise me what I should take, I usually send the result by email as it takes them so long to answer the phone, if it is way out of range I phone them
If it happens at the weekend I just my own Warfarin, usually only need to increase or decrease by 0.5
I also change my diet for a few a days, broccoli if to high, wine if a bit low that's only if it was a little bit out of range!
the Doctors at St Thomas have written to my GP to advise him to give me a prescription for 40mgs to give myself if my INR is under 3
my range is between 3-4
I test my INR with my coagulant machine if I have a headache, more muddled, start to feel even more tired, I can usually tell when is out of range 9 times out of Ten I am usually right !
I know some people test their machine every time they start on a new pack of testing sticks
I hope this makes sense,
oh yes I forgot I would also phone your consultants secretary and ask them if you could leave a message for your consultant or actually speak to some one from their team
Explain that it's really important, if not possible tell her the problem and ask her/ him to tell the Doctors from the team above
hope this works, good luck please let us know how you get on
Sorry I mention to put 40mgs Clexane along with the warfarin
I hope that the route suggested by your emergency trip doctor is successfully navigated. Sound like its definitely time to sack that GP.
The follow up to this was I attended kings 2 x a week for two weeks and they monitored me closely and gave me clexane till I was back in range. I have now signed up with a new GP!
I have been feeling foggy, dizzy and weak for over a week now but received no help from the medics. Just said to keep on with the paracetamol. Any suggestions anyone?
I haven't the confidence to even go out at the moment. H E L P !
Hi Pluto5,
I have read a little about your earlier posts here.
What I can see you have not been diagnosed for APS but you may well have it. I cannot either found that you have tried to get an APS-Specialist to talk to regarding your symptoms. Some of us have suggested that you should do that.
Those memory issues you talk of I have had also and other neurological symptoms but that was before i had started Warfarin. Warfarin was a lifesaver (as Gina told you) for her and also for me and for several others here on this APS-Forum.
What I can find from your papers you are on Dipyridamole. I have not heard of that. Did you GP prescribe it?
As you have answered an other persons question now you will perhaps only have my answer. Put your own question to get help (better for you) and please get an APS-doctor as soon as possible to discuss your SEVERE symptoms. We have microclots and microembolies that do not always show up on an MRI, EEG or other examinations.
Please let us hear also how you get on!!
Take care!
Kerstin in Stockholm
Hallo again Pluto. You have written that you do NOT have APS but a year ago you write that you do have APS.
Perhaps you have forgotten about it?
Dipyridamole is the same as Persantin and is often used together with another bloodthinner.
Please Pluto read at Hughes-syndrome.org/abo
and ask you GP to take those bloodsamples for APS. Tell him how you feel and ask to be referred to an APS-Specialist.
I think you need to be well and properly anticoagulated. As Dave has told you earlier you may need Fragmin or Warfarin. That may save your life. It has saved my Life. I had bad memory also before warfarin.
Anyway these are my thoughts I am not a doctor but I have been on this site several years and learnt from other members and have read a little about this illness that I have and probably you also.
Kerstin
What I do that keeps me going.
What to do during suspected flare-up?
Help please, What do I ask my GP now?
What to do now?
