Sticky Blood-Hughes Syndrome Support
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Question about blood tests

As I mentioned in my last post I will be having updated bloodwork done to check my APS and clotting time etc. will the fact that I take baby aspirin, NSAIDs, propranolol, and methocarbamol affect the accuracy of my blood test? I guess I need to call my doctor to ask him if I continue the meds before the test. I am curious of anyone's knowledge about this. Also I would like to know about what it will mean if this time around it tests me negative for APS. Last test was 13 yrs ago. Are they more accurate now. Before I was called "borderline" I know it sounds crazy but what if it says I don't have APS after all these years. What does that say for the lifelong migraines I have had and the 4 miscarriages and the huge clots from my uterus after birth and the poor circulation in my hands etc etc. I guess I am worried that this will put me right back to not having answers for my health issues. Could it also show that I am now not "borderline" but full blown APS and if so will that automatically mean Coumadin or Warfarin? And once you go on that is it forever? I have lots of things spinning in my head now that I am seeing the Hematologist again. Also, does anyone know if St Johns Wort and Alfalfa are safe for APS. I was wanting to try St Johns for depression and the Alfalfa for sinuses. But I don't want to do it if it's bad. They don't look to interact with my medications as I checked on a drug interaction checker app. Thanks so much everyone on here for the knowledge and support you all give. I used to feel alone and now I don't.

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Take a deep breath, we're all here for you. I test light+ for APS, but clinically, I'm a specimen. I Have you possibly tried sumatriptan for your headaches? I'm sorry you're having such a tough go at it. Please, just, know, you're not alone.

I do believe a baby aspirin will tamper with the result however your doctors will take that into account, but I would make sure and mention it as doctors are busy people.

Is it possible the Nsaids are causing the migraines? Review your list with a pharmacist and doctor to see if any side effects can produce your issues.

Please take care.

~ Blue Skies To All ~

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Hi, take one step at a time. Do not stop taking any of your prescribed drugs for the tests, your Doctor knows what you are on and will take all into account. Some if your drugs are required to reduce over a period of time, not suddenly.

Personally would not take any extras at the moment and certainly not without your Doctors knowledge- I read somewhere that St Johns Wort is not good for us but my brain fog for the life of me cant remember why!!

You will read a lot on here from others with negative blood results - everything will be taken into account, your medical history, so dont panic at this point.

Is your Heamatologist an APS specualist, that would be good?

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Hia, just wanted to chime in. My consultant at guys has said that baby aspirin does NOT effect the blood work - not sure about your other meds. I would ask the person who has requested the blood work and if these meds are working for you I would be very reluctant to stop even for a short time - but you can discuss with them (just remember it's your body and you have a say in your care)

I think your history says a lot and fits well with aps boardline or not remember some people are even seronegative.

Regarding St. John's wort I would call your local chemist (mine is great) and ask them to check for interactions and if it has any effect on the blood such as thinning or clotting as lots of herbs do.

Try not to get yourself in too much of a state I know easier said then done, but the reality is that no matter how much you worry or go over things in your head your not going to know where you are until you get the results. Try to accept that - it might make you feel less tense.

Good luck - try to relax xx

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The test I was thinking baby aspirin might effect is the clotting time one, I'm not sure though.

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In the past year I can't tell you how many clotting screens I've had. If I take aspirin or not my results (particularly aptt) are always the same - aptt prolonged everything else within normal range.

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The most important thing now is that you get a Specialist who really knows what she or he talks of as to autoimmun illnesses. He will be able to answer all your questions. Hope your Neurologist has referred you to such a Doctor!

You should take Lupus Anticoagulant before you start Warfarin. Later it is too late.

Aspirin should not be a reason to avoid blood-tests.

Kerstin in Stockholm

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I read up on all of my medications and it doesn't appear any of them will affect the outcome of bloodwork. I also found out that Alfalfa is something people with APS should never take if on Warfarin or Coumadin. It can actually counteract with your medication and make it in effective because it has the ability to speed up blood clotting. Just a warning everyone should be aware of.

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Personally I take no plants as I have been warned to take them. When you see your Specialist who understands autoimmun illnesses he or she will be able to give you the correct drugs and you will feel much better I am sure. We have found that exercise is necessary to feel better but that you can not get on any drugs.

Keep my fingers crossed it is a Specialist you are going to!

Kerstin

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I think you have read enough on here to understand that sero negative results can happen. Print some articles out to take with you to heme. Look at APSnotFAB's bio.

Yes, warfarin or fragments/ Lovenox for life. It's far easier than chronic migraines. Isn't that wonderful news?!?! It IS wonderful news!

Sumatriptan helps with migraine. A cocktail of Benadryl and phenagren and magnesium helps also. To help sleep through to break migraine .

Adding daily magnesium supplement has been recommended by all my docs. Titration slowly needed. 200 first week. Add 100 or 200 mg weekly until you get to about 600 mg or so. 800 if you can. Persistent diarrhea means you hit limit- back off to the last titration and that's your daily migraine maintenance dose.

Anticoagulation should prevent altogether.

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Hi Kelly,

I would like to ask you two things; 1) Why should you take Magnesium supplement?

2) You have said that you could feel the micro-clots and DVTs try to reform. Could you explain what you mean with reform? Feel them move?

Kerstin

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All of my doctors have told me that there is a large volume of documentation supporting magnesium supplementation with the management of migraine mitigation. This includes neurologists.

I am keeping my magnesium on the low side until I can establish its direct effect on warfarin. I'm having some trouble getting reliable information on this, but all doctors know I'm on warfarin, so I'm assuming they would never prescribe it if it interacted. I hope I'm assuming correctly...)

As far as the DVT's reforming... it starts to feel like some one is putting a tight band around my upper arm . All my veins start popping up. Especially at wrist- where a woman would put perfume on her under wrist - It feels like tremendous pressure is building. It's because blood flow is slowly being restricted. It gets worse and worse each day. By day three or four... Then I know I should probably go have it scanned. "I can feel it building." This means platelets are starting to collect one after the other.

At my vascular surgeons last week he used the term " propagating." The clot is " propagating". Or building .

This also happens in," thrombophlebitis " of the superficial veins. It turns out he does not like to use the term ,"thrombophlebitis ". He said it's an antiquated term and the term " superficial vein thrombosis " should be the only term used. This can lead to DVT's .

I do not feel any thing moving at all.

The confusion for me is my veins can swell from inflammation from the disease itself. ( antibodies attaching the epithelial cell layer of veins/ arteries) So sometimes it's hard to tell if I'm developing a DVT, or if it's just inflammation. Usually it's a DVT about 50% of the time. Not such good odds to gamble with - especially since I watched my mother flip a clot and die...) so I tend to get them checked. I probably shouldn't wait as long as I do but ...

When the doctors look at my veins they think for sure the Doppler sonogram scan will be positive. When it's negative, they are surprised. Then often three or four weeks later it will be positive for a DVT. I think sometimes the scans are a little behind what is happening in the body.

I am getting ready to post an informative "mini tutorial" about my vascular surgeon visit, as I think many of us have very similar issues and questions.

Today I'm getting ready to have my arm scanned again. ( Doppler sonogram.) just to check. For three days it has felt very uncomfortable. Last night it was so uncomfortable I did not sleep well. ( it usually feels worse laying down with a clot.) the last one from May 21st which showed no blood flow at all - has resolved completely. So if it's clotted again- we know it's a new one entirely.

I hope they will do a d dimer. I ask- it's hard for them to understand it's important. Usually they don't do it.(?)

My veins are also extremely unhealthy. They are "blowing" ( breaking) and not flowing blood properly. I seem to have too many valves. I'm not dehydrated- although I could always do better...I'm a little too addicted to coffee... ( shhhh. I know, I know....)

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Kersten, what I mean is when they draw blood they can hardly get even One vial. Then I will just stop flowing. Or they will get in vein... and nothing! Not one drop will flow out. The nurses say they have never seen it before- ever.

Usually they can't even get into a vein! To start an IV is a night mare. 8 sticks maybe. When I was on daily Lovenox injections and had to be drawn for levels, my hematologist s nurse was thinking to start a port line. ( permanent portal direct into near heart.)

I'm the hospital with lady IV they suggested a PIC line .

Something is just not going at all correctly with my veins at all.

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