For Those Of You Exclusively On Enoxaparin Injections- I Have A Question 🙋‍♀️

[KellyInTexas]

How often is your hematologist drawing your afXa levels?

[Star13]

once when I asked but other than that its never been checked. It’s also a difficult test to do because as soon as the blood is drawn it must be packed in ice and taken straight to the Lab and tested immediately. It took 3 goes to get a result when I had it done so you have to go to a major hospital or to the Lab where the testing takes place.

[KellyInTexas Administrator in reply to Star13]

yes, that’s correct. Been through the trials and tribulations there! ( the vial also needs to be kept relatively still. No crazy salsa dancing 💃 on the way to the lab- which should be within the same hospital where blood is drawn.)

[HollyHeski Administrator]

Never as far as I'm aware.

[Star13]

I’m not really sure what value it has.

I’ve also recently read that if you have a thyroid condition and are also on heparin, the heparin can affect the results of the thyroid tests. This has come out of discoveries during Covid studies but it is unclear about the time between a heparin dose and a thyroid dose and then test.

When you do your thyroid tests they should be done around 9am and before any thyroid dose on that day which can be taken as soon as the test has been done. The last dose of thyroid should be 24 hours before the test if you are on t4 and 8-12 hours before the test if you are on t3. If you are on Heparin you then also have to work in when to inject the heparin which should be so many hours away from the thyroid dose.

I have never been told any of this or been advised when to inject. Not only that but no one seems to be able to advise me as this seems to be so new. They say you can’t rely on the normal Thyroid tests and that other tests should be done instead to get true values of thyroid status. I think this is a watch this space thing!

[Ozchick in reply to Star13]

I don't have thyroid issues but am on a number of meds, including ones for Epilepsy so I think he's making sure they don't interfere? He also works out of a teaching hospital and some visits I see a registrar first and then he quizzes them to make sure they have asked all the right questions.

[Ozchick]

Every 3 months. It has fluctuated a few times but he keeps it between 1.0 and1.1-and has to be a full vial taken 4 hours after last Clexane injection. I have a local lab that does it and I make sure the same nurse is on, (She can draw blood out of a stone!!) so I have a butterfly needle and the first few drops discarded. It has to fill the vial first go (no stopping and starting) important if you have tiny crooked veins like me!

[KellyInTexas Administrator in reply to Ozchick]

thank you. Same veins as you- I was diagnosed last year with loeys-Dietz syndrome type 5. I’m having trouble with my veins breaking.

Also spontaneously breaking- any vessel . I’m dealing currently with my third intramuscular bleed- currently a muscle pulled our or spontaneously . So massive bled- hematoma is 4x9 cm in buttocks. Loeys-Dietz causes hernias ( 2 surgeries for this at 18 months old) plus others later.

But APS I need thinners. Nightmare combo. I’ve lowered my dose from 40mg enoxaparin every 12 hours to 30mg.

I usually weight about 116 ish but I’m guessing now it’s 112

[Ozchick in reply to KellyInTexas]

Gosh! You win again!! I had to Google that (rare, of course) syndrome. I am probably below the optimum dose- ie 1ml/kg of Clexane- and I think that's why I get tested so frequently. INR was always labile and Rivaroxaban was ruled out so had no other choice.

Haem did explain that optimum dose for "normal" people was higher and shorter duration so this seems to suit me and has no other restrictions dietary or other. Having said that, you will know as anybody will, everyone is different! I'm not sure if the scale of anti factor 10A is the same so my level of 1.0-1.1 could be another number in the US. Do you have a number?

All the best for getting this sorted out and quickly

[Funinthesun]

my Haematologist checks every 6 months when he sees me.