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Sticky Blood-Hughes Syndrome Support
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Heparin hit

I think regulars on here are aware of my recent health issues and hospital stay.

This morning I had what is known as a Anti X Tena Assay blood test. The results have shown I have reduced platelets so the hospital have arranged another test on Tuesday. They seem quite concerned and now I am worried.

Has anyone else experienced this who could perhaps explain this in more detail to me.

Thank you

26 Replies

Reduced platelets can be caused for a few reasons. What is your result? have you ever been looked at or tested for Lupus? Anaemia is common in lupus and may be the result of a variety of factors. Occasionally, the number of platelets falls, leading to "purpura" - small red pinpoint spots of bleeding in the skin. This would be a sign of thrombocytopenia. Here is a link:


Very very occasionally, people on LMWH can get this in the first few days of treatment. Perhaps thats why they are checking.

Patients with Hughes Syndrome can occasionally show a reduced platelet count. sometimes getting quite low but more usually borderline low at around 90,000.

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It was just below the normal range it had dropped since checked in august. She went on to mention thrombocytopenia or something that sounded like that but I didn't understand what was being said until I googled it

As you are aware I have been on LMWH for just over a week now.

I have had two boarder line lupus results but positive lupus anti bodies. Lets hope this does not turn into something more serious, the nurse sounded concerned.


I have had purpura. The only time I remember was after being on the beach. I assumed at the time it was lupus thrombocytopenia. I didn't go off and have blood tests, since I was on vacation and otherwise was well. It just went away on its own, and as far as I know, they have never seen it on blood tests. So at least for some people (me), it is a temporary situation.


Hi AnnNy,

I cant say I have heard of purpura. I googled purpura, oh wow you look like a plucked turkey with all those little red spots. You wasn't in need of an itsy bitsy teeny weeny polka dot bikini you were covered in them.

I have only been on fragmin for a week it seems my antibodies are fighting against it and my platelets have dropped putting me at high risk of clotting.

I thought these antibodies of mine were supposed to be on my side. :-(


It wasn't as bad as in the photos. The episode I remember were tiny black and blue marks. They were on my shoulder where I was carrying a purse.


Don't worry too much about low platelets. Mine hover between 60-120 and have been as low as 19. Docs will keep a close eye on it if it is concerning.


I am a little worried because the nurse seemed very concerned and a blood test has been arranged for Monday.

Time will tell what is going on.


Hi Jillmo,

Very good that they are concerned....... remember earlier at the hospital they were not........

Good Luck on Monday! I have an appointment with my Rheumatologist on Tuesday.


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Hi Kerstin,

It is very sad that things have to get to crisis point before they act. It will be interesting to see what takes place.

I hope all goes well at your appointment. Jill x

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Low platelets are normal for me. They've been low every month for almost five years. They don't seem to get too concerned until your platelets are below 20. I did and they did tests daily. I got as low as 9 while in the hospital from tick bite. Worst case they do a transfusion of platelets. For me, they just took me off fragmin for a couple days while watching closely. Typically, no worries😁


Heparin anti-Xa tests are sometimes used to monitor and adjust standard heparin (unfractionated heparin, UFH) therapy, though the primary monitoring tool for UFH is currently the PTT test. Heparin anti-Xa may be used to monitor some people who have "heparin resistance" who do not respond as expected to UFH or who have an underlying condition such as liver dysfunction or interfering factor(s) such as lupus anticoagulant (LAC) that affects the PTT test result.

Low molecular weight heparin (LMWH) and fondaparinux therapy is usually not monitored, but healthcare practitioners may order heparin anti-Xa tests in some cases. These include for women who are pregnant, people who are obese (more than 100 kg body weight), very young, or elderly and those who have kidney dysfunction. LMWH and fondaparinux are primarily cleared from the body by the kidneys. Any condition that decreases kidney function can decrease their clearance, increasing their concentration in the blood and increasing the potential for bleeding.

When is it ordered?

The heparin anti-Xa test is not routinely ordered but may be performed whenever a healthcare practitioner wants to evaluate UFH, LMWH, or fondaparinux concentrations in the blood.

It may be ordered periodically to monitor UFH therapy, especially when a person is not responding as expected to UFH or when the PTT is not useful.

When it is used as a LMWH and fondaparinux monitoring tool, heparin anti-Xa is primarily ordered as a "peak" test. It is typically collected about 4 hours and 3 hours after a LMWH and fondaparinux dose is given, respectively, when the level in the blood is expected to be at its highest level. Random and "trough" anti-Xa tests may also be ordered when a healthcare practitioner suspects that someone may not be clearing the drug at a normal rate. Trough tests are collected just prior to the next dose, when levels are expected to be at their lowest.

What does the test result mean?

Heparin anti-Xa results must be evaluated in the context of the type of heparin that a person is receiving (UFH, LMWH, or fondaparinux), the timing of the sample collection, and the condition that the person is being treated for. Results from different laboratories may not be interchangeable. Therapeutic reference intervals and the heparins that they are based on vary.

In general, for heparin therapy (UFH, LMWH or fondaparinux), if test results are within an established therapeutic range and the person is doing well clinically – not clotting, bleeding excessively, or experiencing other complications – then the dosage is considered appropriate.

If the heparin anti-Xa result is high, then the person may be getting an excessive dose and/or not be clearing the drug at an expected rate and may be at an increased risk for excessive bleeding.

If the heparin anti-Xa result is below the therapeutic range, then the dosage of heparin may need to be increased to prevent excessive clotting.

Because of differences in the methods used for measuring heparin anti-Xa and in the test results generated by various laboratories, samples for repeat anti-Xa testing should be sent to the same laboratory.



In terms of low platelets, you will need to have a specific test to determine the number of platelets. Sometimes, if it is taken from a general blood sample, the platelets can literally stick together which means a false platelet count. Hence they will perform a specific test to check your platelet count.

Don't be alarmed! Platelets are usually within a range of 150,000 to 450,000! However, patients with lupus, for example, can have thrombocytopenia (low platelets). Even if the count is 80,000, unless you take a large knife and hack at yourself, you will be fine.

I recently had to have a second spinal operation. Immediately prior to the operation, two doctors were discussing my platelet count of 80,000 and whether it was OK to have the operation. There was no problem even at 80,000. I had stopped baby aspirin for a week prior.

Therefore, there is no need to feel alarmed (of course, you cannot help how you are feeling)! The tests you are having is to make sure that your dose of heparin is correct and whether it needs adjustment.

My advice is to ask your doctor about your situation because only they can give you the correct explanation.

With good wishes,



Thanks Ross I think I understood what you were explaining.........I have cotton wool head at the moment.

You say you take baby aspirin does it not irritate your stomach ? I found even after taking lansoprazole my stomach was very sore taking gastric coated aspirin.

Where my platelets are concerned It were the hospital that worried me because they were alarmed. I am having trouble getting my head around all of this.

I have no intention of getting a knife and hacking my self so I assume I am safe. I have another blood test arranged for Monday so it will be interesting to get the results. I think the main problem is I have lost confidence in my local hospital they seem to have little understanding of our condition. Thank you so much for the info. Xx


No, I did not say that baby aspirin doesn't irritate the stomach. Using enteric coated aspirin does help prevent irritation, but sometimes it is necessary to take another drug to reduce and prevent irritation caused by the drugs we take!

Some doctors do not understand because they are not taught the necessary information, which is why we need expert doctors!


Hi Ross,

I think you misunderstood what I said, I was asking if the aspirin irritated your stomach ? I found even though the aspirin was enteric coated it still caused irritation this being the reason for a change in my medication. I take lansoprazole daily but the aspirin still gave me problems.

I totally agree we are in need of expert advice and Drs that are well educated in APs...........Its finding them that is the problem.


Enteric coated aspirin is well tolerated but I take a powerful drug to mitigate its effect on my stomach; and the many other drugs I have to take i.e. Omeprazole.


I have tried both Omeprazole and still take Lansoprazole but still I suffer with the rawness of the stomach problem.

I too take other drugs but tolerate them better than I do the aspirin.


You can only be guided by your doctor and take all the precautions you can, including lining the stomach before taking the drugs. It's a very problematic situation. We have to take drugs for our medical condition; and drugs to counter their side-effects!


WOW that is so interesting... also explainssome things- Jilly has been experiencing kidney problems & fluid retention.

Jilly - hope they get on top of your health issues soon & start feeling better xx


I think they may have looked concerned because some people with blood cancers have low platelets, and they may have more experience with that than with people with autoimmune disease. I always assume weird blood tests are about my autoimmune disease, which just give you occasional strange results. I've discussed my skin manifestation of low platelets for with rheumatologists for 30 years, and they are not concerned at all. It's just another symptom of my autoimmune diseases.


Hi it is not unusual to have a platelet problem, especially if Lupus is going on, my daughter had this a few times, as did my late father, he had Thromboyctopenia alongside his Hughes Syndrome/APS and my daughter had Henoch- Schonlien Purpura (HSP). Also the red spots Lynn mentions are common with that. I have 6 currently but blood tests are ok. I hope they switch you to the right medication for you, and you are progressing well with your important quest to be allocated a specialist who fully understands our condition, from our list on here. MaryF

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It is a constant battle. My Gp informs me he is unable to referrer me to another specialist, this I contradicted but he wasn't having it. I am unable to see the consultant at my local hospital until the 27th of this month, what am I supposed to do until then god holy knows.

I am all over the place with balance problems, twice I got out of bed last night and nearly collapsed on the floor. I dont have any red spots but I do have plenty of bruises and lumps from the injection. One lump I am a little worried about because It has not altered in size since I came out of hospital. It wouldn't be so bad if my balance and head would sort its self out. I really am not coping and it doesn't help because I live on my own.

Nurse is coming out on Tuesday, I dread the thought of going back into hospital and having to deal with a load of no all's who no nothing.

Am I frightened ? Yes I rudy well am.


If I was in your position and I have been, I would pay for a private appointment at London Bridge Hospital, at the London Lupus Centre, and get your care back on track, your GP can then be guided by them, to get your NHS care back on track? Do I have private medical insurance? No. but I have never regretted it for myself and the children. Dr Kaul is very good, and Prof Hughes does not any longer take new patients. MaryF

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I have been to London Bridge to see Prof Hughes but at present I am not in a fit state to travel to London. I travelled all the way from Swindon to London Bridge by taxi I were so desperate to see the Prof. I was also a patient of Dr D'Cruz but what was the point of travelling all that way to not be followed up by him ?

I am not well and unable to travel any distance anymore this is why my treatment had to be brought nearer home. The platelet drop is of a concern but it is the awful off balance feeling that is worrying me. I am all over the wretched place and having difficulty keeping my balance, I can remember admin Dave speaking of having very similar symptoms.

My hands and fingers feel very weak with strange sensations. I think the best place for me is back t bed or it will be a case of fall down or lay down. Xx


Hi Jilllmo,

I think MaryF gave you a very good suggestion.

Not everyone lives in England and not everyone has seen prof Hughes and because of that it could be possible for you to perhaps see the Professor. He would understand and if he does not understand no Doctor will. I have heard he does not take new patients anymore but you are still his patient. Do not loose that chance!

Otherwise dr Kaul who Mary knows is good.

I had also like Manofmendip (Dave) balance-issues caused by micro-emboli but those tiny things need anticoagulation. They only happened in attacks for max 5 minutes but they were frightening.

Good Luck from Kerstin


Good morning Kerstin

I think most balance problems are unnerving to say the least.

My present symptoms are definitely caused by the LMWH I feel as if I am drunk. I nearly ended up under the dressing table this morning. :-(

As much as I would love to see Prof Hughes I am not well enough to travel to London. I am in need of a referral to a specialist nearer home but it is a battle to get my Gp to do so.

Jill x


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