Haematology Appointment- advice please!

[Helsbels_]

I have an appointment with my Haematology Consultant on Thursday and I just wanted to learn from others experiences what I should expect? I haven’t been asked to do bloods prior to the appointment, and have double checked this with the consultants secretary and she said I don’t need bloods done.

I’m on Warfarin and this is my 6-month review with Haematology. I had DVT back in the Summer of 2017 (following a fractured foot and was in cast up to knee), I was on Rivaroxaban for about 6 weeks. In November of 2018 I suffered a mini stroke as a result of Venous Sinus Thrombosis and have been on Warfarin since. One stroke Consultant said I would be on Warfarin forever, and 2 days later a different consultant said it should only be for 6 months.

At my review with my Stroke Consultant she referred me to Rheumatology and I was hopeful to get some answers. At the appointment she gave me leaflets about Antiphospholipid Syndrome, Lupus and Fibromyalgia. She told me to look at the list of symptoms of each and come back for an appointment in 6 months letting her know which symptoms I still have?! The day after the appointment I received a letter from Rheumatology agreeing to my referral, that took 6 weeks between being typed and actually being issued that referred to me having Antiphospholipid Syndrome and that my Haematologist might want me on a 3-4 INR rather than 2-3. I was told to just wait for my Haematology Appointment.

I don’t want to go to Haematology with the expectation of finding out any information and being disappointed like I was with Rheumatology. Who would actually diagnose Antiphospholipid Syndrome; Haematology or Rheumatology? I’m confused what the Haematologist can really say if she doesn’t have any bloods? Can anyone offer any advice please because I feel like I’m just going from appointment to appointment and never finding anything out about what the underlying condition is. Thank you x

[KellyInTexas]

Hello, Helsbels,

I have quite a lot of info to offer you.

You will need a referral from your GP to a Rheumatoligist or a hematologist. Either one can run the APS panel.

APS is a “hybrid” auto immune disease that spans itself between the disciplines of Rheumatology, Hematology, and almost always neurology.

Almost always all three specialists are involved in our care.

I like to use the following analogy: I think of APS as a huge ocean going liner on a vast sea. Someone has to understand the ocean, and the ship, and the few members, and the shore line ahead... the icebergs... mechanical issues... etc...the entire picture. That would the the Rheumy. The neurologist.

Keeping the ship on course is the INR. That’s the Hematologist. S/he is the captain of the ship. It’s vital. If that doesn’t happen correctly everything else falls apart instantly and nothing else can function correctly.

All the other factors I mentioned are very vital as well and that’s where all the other sub specialists come into play.

[Helsbels_ in reply to KellyInTexas]

Thank you. My Stroke consultant referred me to Neurology but my GP said I didn’t need to see a Neurologist! The Rheumatologist didn’t seem to want to be specific about what was going on. I haven’t actually been told that I’ve tested positive for APS but it was referred to in my letter, so I really need to clarify that with the Haematologist this week. My INR doctor said if I have APS then my INR can’t continue to be taken with the fingerprick test?

[KellyInTexas in reply to Helsbels_]

A neurologist would be brought on later, only if needed.

A GP usually refers to a Rheumatoligist or Hematologist if APS is suspected. If you already have a Rheumatoligist, I’m not sure who prescribed your warfarin or why.

If you have a very erratic ( labile) INR, a coagucheck machine would not be suited for you, I agree. ( the Anti-Phospholipid antibodies tend to interfere with the reagent on the back of the test strips, and cause them to be higher than the true value, which is the venous puncture, or vein value.) It depends on the patient. It also depends on on high the INR needs to be run.

Patients who use these finger prick machines should never use them as a replacement for the gold standard Venous puncture, or vein draw. They can be useful in some patients who demonstrate a consistent,” off set” between the finger prick value and the VP value. It help them, for example, figure out how much green leafy veggies they should have at dinner, or if they are self managing , how to micro adjust dose and report to doctor. A vp should still be drawn bi- weekly.

( for very volatile INR patients such as myself.)

If I am understanding you correctly, you say you have had a stroke.

This means you have demonstrated the need for a higher INR.

My doctors and I have decided it’s better for me just to vein test 3-4 times a week. I was too volatile, despite maintaining a very steady diet and life.

You and your doctors will have to see what is best for you, but I’m very confused why it is that you are confused as to whether or not you have APS.

It may be that you have met the diagnostic criteria for the antibodies, but have not met the diagnostic criteria for the clotting. In order to to be diagnosed with the syndrome, you must meet the diagnostic criteria for both.

But then why are you on warfarin?!

You do see my confusion here?

I’m sure your doctor will clear up any confusion you have.