I despair I really do.

[Tucson]

Back on the 3rd of Feb I had a third stroke while I had an Inr of 4. They didn't believe I'd had a stroke and tried to send me home. I wasn't leaving until they agreed to an Mri, they booked me in for one on 6th Feb and as I was hitting my head against a brick wall I left. The Mri confirmed the stroke and after much persuasion they added 75mg of Asprin to the Warfarin, they actually thought I should just continue with what I'd been doing with no change and couldn't understand why that troubled me. They eventually decided to raise my Inr to 3.5-4.5 but didn't put anything in writing.

At my next fingerprick test I had an Inr OF 6.2, skipped 2 doses, tested a week later and had an Inr of 6.2. Skipped 2 further doses and tested a week later with an Inr of 6.2 again. Skipped 2 further doses tested a week later and you guessed it I had an Inr of 6.2. Following week after skipping 2 more doses my Inr dropped to 3.5. They thought that was great and decided to see me in a fortnight. I explained I'd just had a stroke at 4.0 so no chance I was sticking at 3.5 and leaving a fortnight between tests was too risky.

Later that day I received a phone call from the local Anticoagulant clinic stating they would no longer take responsibility for me so BYE.

I rang the hospital clinic next day, explained everything at length and said I needed someone to take over my testing, they took down all my info and promised to call me back. A week later I had a physio appointment at the same hospital so decided to visit the Anticoagulation clinic. They were not best pleased to see me although one nurse tried to help the sister running the clinic basically told me to leave as I was disrupting her clinic. They said they would write to me and even though there were only 2 people in the clinic they refused to test my Inr. I'd already purchased my own machine by this time and was happily self testing and managing but trying to still do things officially. The letter did arrive with an appointment for a week ahead, so by the time of the appointment I hadn't officially been tested for a month. I kept the appointment even though the letter made no sense to me, it was an appointment.

So on the day of the appointment they tried to change me to one of the new anticoagulants and seemed blissfully unaware that they are not approved for people with Aps or a high Inr. Once we got over that she did in fact track down the Dr I had seen on the stroke ward and asked him to pop in and confirm my raised Inr, which to be fair he did. I did get my Inr checked too which was the same as my own reading.

I expressed a wish to self test as I was doing it anyway and I'm rather good at it, far better than their computer program, She said she'd ask the consultant.

Today I went for another test and their reading and mine were identical, great, I had altered the dose as they had it too low and by adjusting the dose had my Inr stable and exactly where I wanted it. Proves I know what I'm doing right, lol was promptly informed I will not be allowed to self test and they'll see me in a fortnight. Hmmm I'm self testing twice a week and I'm stable, I'm self managing because I'm more accurate than the computer program, I've bought the machine and strips, not asked anyone to pay for any of it but no I can't self test. Asked who had declined my request and informed it was her manager the same unhelpful senior sister who threw me out of her clinic when I was being very polite asking for my Inr to be tested, so no excuse.

Thank heavens I have an appointment at st Thomas' on May 4th.

[HollyHeski Administrator]

As far as I am aware, its internationally recononised that anyone can walk in and have their INR checked. My brother in law just walks in to our clinics here on the NHS whenever he is over from Austrailia and gets it checked..... So I dont think they should or allowed to refuse, maybe put in a complaint?

Keep all your own tests and the clinics test as record of INR to take with you to St Thomas's, it will help your case.

As you have found and many of us know - we know our own bodies!!

[Tucson in reply to HollyHeski]

Well that's what I thought but clearly not lol.

I have recorded all my readings in my yellow book and the lack of clinic tests are conspicuous by their sparse content.

I just thought as it was straight after a stroke they'd take the need to stay on top of my Inr seriously, obviously not.

While I was there today I mentioned in the 4 years I'd been finger prick tested they had never run a comparison with a vein draw, not once so no clue what the differential is. I was told if I wanted a vein draw to go to A&E.

[HollyHeski Administrator in reply to Tucson]

Really unhelpful arn't they?

I presume this is your local hospital?

When I have had clusters of TIAs and gone into my local hospital, I couldnt even get them to ring for advice from St Thomas's, even though I carried a letter from Prof Hunt requesting this. They have even argued about not giving me my own medication. Now I have an extra bag of medicine that I hide, just in case. Sad isnt it?!!

Its so frightening that they wont listen, at least you have your appoitment in a week or so. When there ask for the telephone number or email address that you can contact when in this situation again.

[KellyInTexas Administrator in reply to HollyHeski]

Oh my gosh... I just got out of the hospital with another DVT. I bring my own Meds and turn them into nurse. Last time they were lost at hospital. Insurance won't pay for more- 30 day supply of Lovenox or $2,000 without insurance.

This hospital experience was horrible- but nurses were very good. Doctor was going to send me home on lower anti coagulation than I arrived with- and a lower INR than I arrived with.

I explained that my doctor had set my INR at 3.5. He asked who that was- I told him Dr Hughes. He asked me who that was... one of my local doctors?

I got the director of nursing in as well as a social worker .

[HollyHeski Administrator in reply to KellyInTexas]

Glad your out of hospital, how are you now?

The extra stress we go through is really not fair- as mentioned I hide my meds, if I have to hand over I just give them the minimum!

Really glad you had the strength to stand up for yourself, not easy - well done.

Wishing you speedy recovery x

[amy1808]

Good god hope your ok , I self test and it is the best thing I have ever done , I do it every other day and just tweak my warafrin when I drop below 3.5 , I'm on clopidogrel as well as . I didn't know you could have a stroke when so well coagulated , scary my GP said no chance of having another x

[Tucson in reply to amy1808]

That was their argument in A&E too "it's not possible to have a stroke with an Inr of 4." Well I'm sorry to prove them wrong but apparently it is possible. It was a much less severe stroke than the previous one no doubt because of the high Inr but scary never the less

[amy1808 in reply to Tucson]

Hope the aspirin works well for you . This disease is a nightmare . One normal day would be nice x

[KellyInTexas Administrator in reply to Tucson]

I'm so sorry you have gone through this ( more than once). Thank you for sharing- so we can all be aware- and I have now learned about hospital protocol. Nice / Pals - international standards. I'll check on this.

Good for you for persevering! It reminds / encourages us us to pluck our courage and stamina when we need to

Thank you!

[Tucson]

Oh there is no way I'm letting this go, I'm heartily sick of having to argue over my Inr. My haematologist has always been adamant that I should have an Inr 2-3 even though I'd had two strokes. I've gradually pushed my Inr higher but only getting agreement retrospectively. I told him I kept getting faint in the shower and on one occasion ended up on my butt as a result, he kept saying it was unrelated and I needed to take blood pressure meds. I ignored him and kept my Inr at 3.5 and the fainting in the shower stopped. After much persuasion from both me and my Son he grudgingly raised it to 2.5-3.5, I then kept it at 4 just as well as that's where it was when I had the recent stroke and he's now rather belatedly agreed to put it at 3.5-4.5 although the letter he wrote to my GP makes me sound like a nutcase insisting I have a Inr of 3.5-4.5 even though he's explained the risks of bleeding I remain adamant as I'm scared of having a stroke. He conveniently forgot to mention my concern is as a result of having a stroke with an Inr of 4. So I'm hardly crazy.

[Lure2]

Hi Tucson,

Thank you for that good story. Well written. Well done to do what you have done. Hope you have the strenght to write to PALs as APsnotFab says.

Have I misunderstood that you did two doubletests in the vein contra the finger and it was the same INR. The coagulation clinic can not handle a Hughes Syndrome patient nor a usual patient either probably.

If the readings are the same you can be lucky to selftest. Continue to wright everything down as you do.

I wish you good luck!

Kerstin

[Tucson]

No Kerstin that's part of the argument they refuse to do a vein draw. They are only comparing my self test with their coagucheck machine test. I've shown them all the literature and they still refuse to acknowledge a vein test is necessary. I'm a bit odd anyway because although I'm LA positive my Inr is normally very stable and well controlled, the Asprin appeared to send it quite a bit wobbly but that has now settled down again.

[Lure2]

I think you know very well to selftest! Usually when the readings differ it is the CoaguChek No. that is the higher one. You know how to keep the iNR at the higher level for your safety. Usually it is only 0.2 that differ for many members here but for me it is between 0.6 - 1.1 when the INR is high there is a bigger difference.

Kerstin

[Yllek]

I'm the same as Kerstin, I'm LA positive and my coaguchek is out by 0.5-1.1. So if your stroke happened at inr of 4 just by finger prick tests then really your inr could've been much lower than you think it was.

Do you not have a friendly GP? I self test but also have spare inr blood forms that my gp gives me to go to the local hospital blood room to do comparisons or double check my inr when I get symptoms but my inr is showing high on my machine. Could you approach him and ask for comparisons to be done?

I would certainly be sending a complaint to that hospital as well!

Take care x

[Tucson]

The Inr of 4 was a vein test done by A&E when I presented with a stroke.

I'm seeing my GP tomorrow because I will now have to get my Warfarin from him, previously the Anticoagulant clinic supplied the Warfarin.

He knows I'm not nuts and has always been happy to follow my lead as he recognises I'm better informed than he is regarding this condition.

Roll on May 4th and st Thomas'

[Lure2]

It is possible that the vein-test can be mixed perhaps and false in some way. Even the hospitals (A&E ) can make errors. I think I have heard of someone with an "event" when on an INR of 4.

Kerstin

[Tucson]

Well they tested it twice as they couldn't believe that anyone could have a stroke with an Inr of 4 so retested it to be sure.

[a_schaider]

When the standard of care has been well documented for a decade, and backed by research, it would seem that they are opening themselves to a potential lawsuit, a class action especially if a group of patients are being wrongly treated.

[MaryF Administrator]

I agree and clearly they need some training in Hughes Syndrome/APS management, clearly they are not up to date with this disease and are decades behind. MaryF

[Wittycjt]

How did May 4 appointment go?

[Tucson]

That was a year ago, St. T's are more than happy for me to stay on the Warfarin / Aspirin combo. they've written to my Gp confirming it. I've discharged myself from the local Heamo and Rheumy and even the stroke clinic. I had too many Doctors and too many unnecessary hospital appointments. St.Thomas's may be a long drive but it's worth it.

[KellyInTexas Administrator in reply to Tucson]

Do you mind me asking, who is your Hematologist at St T? It’s Bev Hunt, correct?

[Tucson]

Yes it's prof. Hunt although I've never actually seen her or Karen Breen I see someone in their team, not always the same one but they run everything past prof Hunt anyway and I'm quite happy with them.