Desperately trying to get back to within therapeutic level

[SteveRN]

I have been struggling to get back to my therapeutic level of 3-4 for the past 3 months, I self test at home and send my results weekly to my GP surgery. Each week I have been telling the nurses how dreadful I am feeling with pain, dizziness, reduced mobility and asking them to increase my warfarin. I had to fight to get them to prescribe clexane as I was showing symptoms of microclots. I saw a Dr and managed to request an urgent haematology consult.

My bloods showed I was anaemic and during an e-consult I asked the Dr if he could do something about it and he said someone else would contact me about my results. It took 3 weeks for them to contact me from having the bloods, I received an e-mail from NHS Direct telling me my results the day after my bloods. Luckily I have a haematology appointment appointment in 5 days I wonder what he will make of all this, I have also e-mailed the oncology-haematology department to request bloods prior to the appointment.

Steve ex RN

[Lind8]

Hi I got told I could not rely on home testing machine with APS & that I have to have venous tests in the Dr's instead. I did do a month of checking venous & machine resukts side by side & they were always different. Also if I could of used machine it needed to be calibrated every 6 home months with Dr's finger prick inr machine too. If not already done it might be worthwhile you checking results against a venous test, checking machine is callobrated & checking with hematologist that they feel home one works with APS. I hope that helps. I'm sure being aneamic will be making you feel grotty too. I hope you get more answers at your apt

[SteveRN in reply to Lind8]

Hi Lind8

When I had my bloods taken I suggested that they do a venous INR check and the result was 2.5 when my machine reading was 2.6 which checked out ok.

Kind regards

Steve

[KellyInTexas Administrator]

please google “the iron clinic”

Just for information purposes only, it’s run by prof Toby Richards. He’s a vascular surgeon at UCLH. Professor Hannah Cohen sent me to him ( privately- he’s also a consultant on Harley street) just to check a few vascular issues with my arm, and he educated me about ferritin. APS patients tend to run low, and ( post menopausal ) women need infusions about every 2 years.

The website has great info for your GP, and a great source of info for you. Open the tab or link that says “ download leaflet or booklet.”

I’d like you to focus on ferritin. Anything under 50 you need to pay attention to- and really at 30 you need an infusion.

[GinaD]

Has anyone checked your platelet count? Before I was diagnosed with APS, I was anemic with sky high platelet count causing DVTs in my legs which was treated with warfarin. The platelet count finally dropped. I then stopped warfarin and that week --( I repeat! ) THAT WEEK, I had my first mini stroke from APS. I was told that high platelets can result in anemia, which is low red blood cell count, ( RBC) as the blood system measures needed RBC levels by counting cumulative platelet and RBC numbers. If one goes too high, the other goes too low. In my case I strongly suspect my high platelet count triggered my immune APS reaction. Not saying this story has anything to do with you, but when you mentioned anemia I thought I should share my story.

[SteveRN in reply to GinaD]

Hi GinaD

I am sorry to hear that you had a mini stroke and I hope that you are ok are doing better now. I know things like that can certainly knock you for six and are very worrying. My platelets are within normal range but I cannot help feeling that something else is going on I am going to try to get my bloods checked again today and because I have access to to NHS Direct and a thing called Patients know best (I stumble on this purely by accident but it’s worth knowing) I receive an email as soon as the blood results are available for me to review them so I can then discuss them with the haematologist on Wednesday. Good luck in the future APS affects us all in many ways.

Kind regards

Steve

[GinaD]

Sounds like you are addressing your issues with patience and expertise! Good for you! My mini strokes were 20 years ago. I know that warfarin has a bad reputation, but for me? Its been a literal lifesaver! In 20 years I have been out of range less then a dozen times. My therapeutic range is actually very low: 1.8- 3, which many say is essentially not thinned at all. But it works for me. My only lingering effect is a small hole in my visual field which makes it hard to spot a certain item on a grocery shelf. But now that hubby has retired I save time by letting his eyesight spot the desired brand. ( My eye doctor continues to keep his close eye on my eyes.)

[MaryF Administrator]

If you have a moment or two write out your symptoms in bullet points also your medical history so you don't forget anything at the appointment, and make sure they look at all your levels of things including Ferritin, Folate, B12, D etc MaryF

[SteveRN in reply to MaryF]

Hi Mary thanks for the advice it was a telephone appointment and luckily it was my normal Haematologist who I get on well with I explained my symptoms and my INR’s over the last 3 months plus blood results B12 ok ferritin 12 obviously iron deficiency I am on ferrous fumarate. Needless to say he was not impressed that I had been outside my therapeutic treatment window for so long and said the dose the nurses had been prescribing me was not enough which I had been telling them for weeks. I had managed to convince them to up it to 10mg which is a start before the appointment and he will be writing to the GP to make sure that they keep me within 3-4 in future and not below 3. He is also referring me to a neurologist to make sure that there has not been any neurological changes due to being outside the therapeutic window for so long as I already have a history of ischaemic brain changes.

Kind regards

SteveA

[MaryF Administrator in reply to SteveRN]

Well done on your joined up thinking and determination to get things back on track! MaryF

[GinaD]

Just read your uopdate. Yeah!