Sticky Blood-Hughes Syndrome Support
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self testing - a severe blow

I have been self testing for the last four years and my PCT have prescribed the strips. Got back from holiday to a letter from my surgery to say that Surrey will now only prescribe 10 test strips per year - worse than useless as far as I'm concerned..

My inr is stable at the moment but I still like to test once a week to make sure and when it goes out of range sometimes need to test twice a week. Don't know what to do. Will have to go to INR clinic to see what they say; yet another appointment to add to the list!

13 Replies

Surrey have also stopped prescribing gluten free products when other PCT's continue to prescribe them. Again this is something that needs to be brought to the attention of your MP as its becoming a postcode lottery for so many things and quite unfair.

In an ajoining area to you where they will not allow the self testing they have started to send phlebotanists to people's homes rather than make them come into the clinic. It's actually cheaper to do that for the patients that have to be brought in via hospital transport.

I sometimes think we are too accommodating when we have people who take us to appointments etc. if we just say we can't get there it is up to them to sort it out. Perhaps then they might start looking at what's cheaper, allowing people to do things for themselves or paying somebody to do it for them. You need to remind them of the cost implecations of their decisions after all that is what's driving this.


Was thinking again this morning about the financial implications of cutting down on the number of test strips they allow. If they do this to everyone who self tests more than ten times a year then surely it is going to add to the costs of running the clinics and creating longer waiting times? Also puzzled as to how they are going to adminster this - letter says we have to get the strips from the clinic. They come in packs of 24 and each pack has a different identification number with a chip that has to be put into the machine. So how are they going to cope with that one????????

My surgery is in partnership with another and clinics take place at both. My one is ok but the other one is further away and even with a blue badge parking is hopeless, so if I have to go to that one will need to fork out for a cab which will cost me £10 return.

I am going to speak to the warfarin clinic later in the week. I feel sorry for the nurses there because they are so kind and helpful and the ones who are going to have to bear the brunt of all this. Then I'll take advice on how to tackle the PCT


Its quite obvious they have not thought this through. Some money cruncher has just thought it was a good cut back but does not understand the practicalities. You should speak to the Haematologist in charge of the Clinic who will have the clout to go up against these suits and reverse the decision when these things are pointed out.


I am so sorry to hear this has happened to you and absolutely agree that this is definitely one to raise with your MP. Another case of postcode lottery.


Hi I use the self testing machine. Write to you PCT and put your case to them, that it would cost them more to test in the laboratory every week, over the year. I told my doctor that, has each fial of blood taken to send to the lab would be more than my test strips. He put them back on my prescription list. Hope you have sucess.


Thanks. I will try. My surgery also uses the Coagucheck but I can't believe that all surgeries across the whole of Surrey do.


Bad news Caroline :( Some PCTs won't offer the strips on prescription at all, but this is an interesting development in Surrey which has always been proactive for patient self-management. I will let Anticoagulation Europe know about this as they are continually campaigning for self-testing to be available to everyone. However, I think this current government are trying to squeeze the NHS so we become a part private/insured health system so wouldn't hold your breath unfortunately ...


This is another pointless "cost saving" error by your PCT. All this drives me mad!

When I bought my coagucheck machine they did say to come back to them if my PCT wouldn't fund... I wonder if they gave any advice? Perhaps there is something they can do? Or, probably they will just arrange to sell strips to you... keep us informed. It's maddening, we really need to keep stress to a minimum, and all that to seems to be happening is obstacles in our way to cause further stress.

Good luck, and best wishes.



Hi again Caroline - I'm not sure if you've seen the announcement by Pulse but this explains the current government's plans to allow the private sector to start governing the operational strategy of the PCTs:

It seems that your GPs surgery will have been encouraged to get you to buy the strips in the future. I am not sure when/if this will apply to all PCTs but we must keep an eye on things ...


Hi, I am sorry to hear that you are having trouble with the strips. I hope this is resolved soon. On a more technical note; I have read somewhere that the strips might be incompatible with some of the patients with APS. Is that a myth, or have we got any information on that? I am asking as my GP wants to move me from a vein blood draw to a machine test, similar to the one you are having at home.

Thank you,



Hi Thomas

Kate from HSF wrote this in another thread two days ago. I think you should find your answer here:

Self testing is up to the individual and many Hughes patients have absolutely no problem whatsoever with the test strips. However, please read the following which will be available on our new website once it is launched in a few months.

INR and self-testing

Most Hughes syndrome patients will be on life-long anticoagulation and, for those who have had a serious clotting event, the current treatment usually takes the form of warfarin.


Warfarin is a powerful anticoagulant which interferes with your blood clotting process in order to prevent blood clots from forming. It has been used as a medicine since 1954 and is considered to be a fairly safe and stable drug.

One major drawback of warfarin treatment is that, because of the way it affects your blood clotting process, your blood needs to be regularly monitored. This is not the case with other anticoagulants (link to anticoagulants.htm) such as aspirin and heparin as they work in a different way.

It is necessary to measure your blood thickness because it must fall within the INR range specified by your doctor: if it is too high, there is a risk of bleeding, but if it is too low there is a danger of clotting.

The most common side effects of warfarin are bleeding and bruising such as prolonged bleeding from small cuts, nosebleeds, large bruises under the skin, and bleeding gums when brushing your teeth. You should seek medical advice if you notice any sign of major bleeding or bruising.


INR is an acronym for the International Normalised Ratio and is a test which measures the length of time it takes your blood to clot compared to normal; normal blood has an INR of approximately 1.0. The INR test was developed by the World Health Organisation so that tests would be standard throughout the world, allowing people who have to take life-long warfarin to travel and get comparable blood tests wherever they are.

INR range

Each patient has a target INR which is set by a consultant according to their condition or disease and medical history. The dosage of warfarin can vary widely from person to person, some patients only need 4mg a day while others may need 18mg or more; therefore, when you first start treatment, the warfarin dose will be adjusted up or down to achieve your target INR. The strength of warfarin tablets is clearly marked by the colour and number stamped on them. If the INR is too low then the dosage is increased; if the INR is too high then the dosage is decreased.

For the majority of people who have heart conditions such as atrial fibrillation or who have had a blood clot but do not have Hughes syndrome, an INR of between 2.0-3.0 is usually sufficient and tends to be the norm.

However, in many patients with Hughes syndrome, the blood is extremely prone to clotting and an INR of 3.0-4.5 is sometimes necessary. The aim is to find an INR target range as low as possible, but for the patient to be relatively symptom-free. This message is very important as patients who continue to live with symptoms (link to symptoms.htm) can find the condition quite debilitating or may even have further severe clotting episodes.

INR monitoring

Everyone taking warfarin will have their INR monitored through regular blood tests either by a venous sample or finger prick test carried out in their GP's surgery or anticoagulation clinic.

It may take several weeks for your target INR to be reached mainly due to the fact that warfarin reacts with many external factors which, in turn, can affect your INR. Warfarin is particularly sensitive to diet, alcohol and other medication – please look at our Living with Hughes syndrome section (link to Living with HS.htm), for detailed information, and we also recommend that you watch the excellent video produced by the anticoagulation unit at Southampton Hospital which gives practical advice and information about warfarin:

Your INR will probably be checked daily until it does reach your therapeutic range. After that it will be about twice a week for the next one to two weeks, then weekly until it is stable; once it stabilises, you should then have tests every six to twelve weeks. If you do need new medication or you become ill, it will be necessary to be tested more frequently until the INR settles down again.

However, many Hughes syndrome patients will find that their INR fluctuates for reasons still unknown and it rarely stabilises. Consequently, a lot of people have benefitted from self-testing their own INR.

Patient self-testing

Self-monitoring can be particularly useful for people with busy lives who have work/family commitments, for those who find it difficult to travel to clinics due to distance or disabilities, for overseas travellers and, of course, people who have highly unstable INRs.

You can self-test by using a portable hand-held machine to measure the INR in a drop of blood. This gives you freedom to test from the comfort of your own home, at work or while away on holiday or business.

There are several monitors available on the international market but, in the UK, there are currently only two: the Coaguchek XS which is made by Roche Diagnostics and INRatio which is manufactured by Alere.

When you self test, you take your own INR reading from the monitor and then give this data to your doctor or nurse. Based on this information, they will then advise you on the dose of warfarin you need to take. Following appropriate training and experience, some people feel confident enough to self-manage. This means they take the INR reading and adjust the dosage themselves.

Points to consider before buying a self-testing machine

Self-monitoring is not for everyone, but it can give you a better quality of life and lets you play an active role in your own health care. However, before you make the decision to buy a monitor, please consider the following points:

1.You must be manually dexterous so you can operate the machine. It involves taking a finger-prick test and applying it to a test strip.

2.You should have reasonable eyesight so you can take the readings as well as use the monitor.

3.Can you get the test strips on prescription? If your GP’s surgery is unable to prescribe the strips they cost approximately £65 for a box of 24 (based on 2012 prices) – this is unaffordable for most people.

4.Will you have the full support of your GP or anticoagulation clinic? This is essential as they will help to train you to use the monitor, be prepared to take your readings and decide what to do with the results. We suggest you make an appointment at your GP surgery/clinic to discuss your options.

5.Does your budget stretch to £300? Both monitors on the UK market currently retail for £299 and they are not available on the NHS. The Coaguchek XS can now be bought on a 24 month payment plan which puts the cost at around £13 a month.

6.You should still be prepared to make regular visits to the surgery/clinic initially so that the readings you take from your monitor can be compared to readings obtained at the clinic.

Will the INR results be the same?

It is now widely accepted that finger-prick testing is just as accurate as venous tests with many surgeries now opting for finger-prick testing as standard.

However, it is common for the INR results between the two to differ slightly – usually between 0.1-0.8. This small discrepancy is caused by the different sampling methods and is considered clinically acceptable as long as it is consistent. Therefore, it important to run parallel testing for several weeks in which your own monitor results are compared to those obtained in the anticoagulation clinic venous tests, and that your healthcare team is aware of this difference.

From patient feedback, we also advise that you recheck this differential each time you use a new batch of testing strips as it can vary slightly. The testing strips are supplied in batches of 24 or 48 so, when a new one is opened, make sure you get a venous reading from the anticoagulation clinic, compare this with your monitor’s results and make a note of the difference.

Is it safe for Hughes syndrome patients to self-test?

Due to the instability of INR levels in Hughes syndrome patients, self-testing is often a sensible approach both in terms of looking after your health and managing your quality of life. It allows you to test immediately if you are feeling unwell, and also means you can get on with your life with fewer visits to the anticoagulation clinic.

Once the slight consistent discrepancy discussed above has been identified, it will be possible to know exactly what your INR range should be on the self-testing monitor. With this taken into consideration, self-testing for Hughes syndrome patients is considered to be as suitable as for anyone else but there are special precautions for people who test positive for the lupus anticoagulant.

There are three tests (link to bloods.htm) which look for antiphospholipid antibodies: the anticardiolipin (aCL), the anti-beta2-glycoprotein1 (anti-B2GP1) and the lupus anticoagulant (LA). The LA has been found to interfere with the reagents which are used in the self-testing strips and, consequently, given false high readings in a very small number of cases (4.3%).

Both Roche Diagnostics who make the Coaguchek Xs and Alere who produce INRatio state that testing may be unsuitable for some people who are positive for the LA. Roche Diagnostics issued the following statement in 2010:

There is a warning on the pack inserts for the Coaguchek XS testing strips which states:

“Antiphospholipid antibodies (APA) such as the Lupus Anticoagulant (LA) may falsely prolong coagulation times ie. they may cause false high INR values and false low quick values. Where APA are known to be present, it is imperative that a result be obtained using an APA-insensitive laboratory method for comparison”.

Roche still recommends that the Coaguchek XS is suitable for patients with antiphospholipid antibodies as long as they have existing specialist advice, and understanding and support of their specialist. If a patient has a positive LA result, then Roche recommend that they continue having venous tests alongside the Coaguchek XS tests for three months to make sure the readings are stable.

What to do if you are positive for the Lupus Anticoagulant

First of all find out whether you tested positive for the lupus anticoagulant – you will be able to find this information from either your GP or the consultant.

If you are LA positive, then you need to point this out to your doctor or anticoagulation clinic when you have the appointment to discuss the possibility of you self-testing with their support.

GPs and anticoagulation clinics often run parallel venous testing alongside your own finger-prick readings in order to establish what the differential is, then draw up an individual management plan based on the comparative INR results. If you are LA positive you must run these parallel tests for three months.

Taking the usual small discrepancy into account, if the results are comparable then it would be safe to self-test. If they are wildly different, then self-testing would not be advised.

How do I start self monitoring?

1.Go through the list of points to consider before buying a self-testing machine.

2.If you think you meet the criteria and it would improve your quality of life, make an appointment and discuss this with the medical professional who manages your anticoagulation.

3.If they are willing to supervise your training and draw up an INR management plan, you should look into buying the self-testing machine.

4.Plan and implement your training sessions with your supervisor. As well as receiving training and education from your GP or anticoagulation clinic, there is an online e-learning tool that can help teach you how to use the CoaguChek XS machine yourself. As part of the course, you will learn how to carry out a test successfully, the importance of calibrating the machines and learn more about anticoagulation. For more information visit the Coaguchek Academy:

5.Once you have received the training, and your anticoagulation professional is satisfied that you are capable and comfortable performing the tests yourself and recording them correctly, you will be asked to sign a written contract setting out your individual management plan.


Hi sorry this is a late post. I self-test, much to my GP's disgust! & have never been able to get the test strips on prescription. My surgery only test my INR level once a month, which i consider to be totally inadequate as my INR fluctuates wildly! One month it can be 1.9 & then the next its 3.1 (target range 3.0 - 4.0). I self-test & then adjust my Warfarin dose accordingly! I was very ill in the beginning when i had my first blood clot & even think i've had 2 tia's but get no support whatsoever from my GP's, but at the end of the day i feel its my life & i'm terrified that i'm going to have a stoke & end up incapacitated, so why shouldn't i do whats best for me? I have been unable to get a diagnosis of APS through various local hospitals, they just won't have it that i've got it - even though i have a friend that is training to be a haematologist & he's looked at a sample of my blood through a microscope & shown me how my blood cells are sticky & they all clump together! So i do whats best for me, even though it is costly!


Hi There. Im so sorry you are having a tough time of it with your local support. So what have they ( your GP and local hospitals) put your clots down to then? Have they actually told you when you asked the question?

Where in the country are you situated and would they allow you to be referred to somewhere that we could recommend for you that would give you better support.

You deserve better than this so perhaps we could help point you in a better direction.


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