Sticky Blood-Hughes Syndrome Support
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Help needed re Diagnosis information

Hi everyone. My doctor is testing me for APS but said she could only do blood tests for anticardiolipin and lupus anticoagulant. She said she couldn't test for beta-2 glycoprotein 1. Is this enough to get a full diagnosis or would I need to see a heamatologist for this? Also, if the bloods come back as normal do I need to be tested again in 12 weeks? My mum has this also. Can I ask you guys what some of your symptoms are as my mum's aren't all the same as mine. I've been experiencing upper body pain, pain in arms and hands, foggy head, headaches and back pain. I also sporadically get bouts of extreme pain mid back or stomach which feels like I am being squeezed, I sweat all over but it is more of a cold sweat. It's excruciating and can last for anything from 30 mins to a couple of hours or so. Does anyone experience anything similar?

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It is best to do all three, some private medical testing companies do private tests now, but hopefully something will show up in the other two, come back to us, if you feel you need more help. MaryF

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Hi,

I can not understand why she says like that. Could it have to do with costs?

It should be possible to test for all three, but you can have a diagnose even if you have just taken one of the 3 antibodies 12 weeks apart.

What is important is if your "Doctor" is a Specialist of autoimmun illnesses and have had patients before so she knows what to look for and how to treat you. Does your mother have the same Doctor as you have today. Was your mother diagnosed several years ago and does she have the 3 antibodies positive?

If you get a diagnose of HS/APS in the near future, I do suggest you look for a Specialist! Perhaps you need to take further bloodtests for ev other autoimmun illnesses. Sjögrens, Thyroidea and APS/HS often go hand in hand like "cousins".

You can read "Sticky Blood Explained" by Kay Thackray. She writes about the different symptoms of our illness and it is good also for relatives to read and understand our illness.

Best wishes from Kerstin in Stockholm

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Hi Kerstin. When I say my doctor is doing tests I mean my GP and everything undertaken via the UK NHS system is down to costs! Maybe I can't get everything tested until I see a specialist, which might take a lengthy wait. Thank you for the advice, I will speak to my mum and see exactly what they found with her and wait for these initial blood tests to come back, see if anything comes back positive and then I will take it forward. Thanks for your reply.

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Even if it is negative you should not leave it like that! If your GP has done the first bloodtest he must continue with the second also!

This is a tricky illness and so many Doctors have no clue what HS/APS is about - mainly too thick blood. You know that now.

Has your mother had this illness several years? How old is she today?

Kerstin

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Thanks Kerstin, I will do that. I think you know my mum. Jillymo. I will probe her more for some info!

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I was only tested for Anticardiolipin and Betagylcoprotein through Rheumatology at my local hospital and I was told I was negative, when I wanted to increase my Warfarin from 2-3 to 3-4 due to brain fog, I was categorically ordered not to by the local haematologist. So with my GP support I contacted the Hughes support group for the name of APS specialist and since then have had tests at ST Thomas under Prof Hunt and I have had a positive result, plus she saw the Livedo and noticed the memory problems. She organised for memory tests at Guys and she has told me that I have Cerebral APS and not to use anything other than Warfarin. My local warfarin clinic have to go by St Thomas prescribing and hopefully one day the consultant there will allow me to self medicate. It's like having to perform at a circus. I have been a warfarin user for 17 years but I have to stay within limits for 75 % of the time. So hope that you get sorted. Do ask to go out of region if local isn't helping as sometimes specialist centres are better at getting the right answers. Yes it's a long way to travel in one day, but I do it as I have to get the right treatment. Local haematologist tried to persuade me to change to new medication just told them I would stick with ST Thomas regime and when I told them at my Clinic they have written a very strong letter to Dr and Warfarin clinic to say under no circumstance should I be changed from Warfarin. So I am wishing all and one the best form of treatment wherever they go.

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Hi Peecie,

Must be exstremely difficult when your home town clinic says no to the drugs and info you have got from prof Hunt at St Thomas!

Good of you to resist!!

Are you still on Warfarin with an INR of 3.0 - 4.0 and on Plaquenil also as prof Hunt described 4 months ago?

Try to get a CoaguChek XS so you can selftest. Did they not test you for Lupus Anticoagulant at the same time at the local Hematologist?

Best wishes from Kerstin in Stockholm

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No sorry Kerstin only anticardiolipin antigen and Betaglycoprotein, they just said may have APS but was negative to the tests. Which is why I eventually asked to go elsewhere.

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Hi Peecue,

I have read what you have written before (several months ago).

I have answered on other posts here today so I do not know what you thought of my other questions. Please read other questions as I am afraid that you are not properly anticoagulated and need Fragmin-shot when your INR is too low. Also test more often to get rid of your severe neurological symptoms you have today.

Kerstin

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Hi Kerstin, sorry I didn't fully respond, St Thomas say fragmin 5000 units when below 3 and my clinic here were not agreeing to follow their protocol, so I had to get St thomas' to send my clinic their protocol and I am properly anticoagulated to a regime of 3-4. It may be that other people in my town are not being treated correctly as the clinic refuses to allow anyone to be increased to 3-4. I am just glad that I am where I am. Before I was a mess and no-one locally would listen to me. That is why I used to go 3 times a week to Clinic before I got my Coaguchek xs machine and self monitor, and then when St Thomas got involved they told me about the 5 days if I am on an increase not every 2 days checking and changing my treatment. In my distant past with my local clinic book one day I was 7.5 then they stopped my treatment and 2 days later without fragmin, I was 4.2 then 2 days later I was 2.1. That is bad prescribing for me. I told them I felt better when the INR was above 3 but the local Dr wrote a letter to my GP to say no to increase. I had to continue testing every 2 days as my INR went up and down above 3, below 2 and the computer says take this amount of warfarin. It was not right for me. Now I feel that I am a human being, I am not having gobbledegook too often and I'm recognising people when I am between 3-4. When I have to ring in my reading as I am not allowed to self medicate although I am still trying, they are sometimes telling me the computer dose which will make my level too high. If I am not sure then I have the machine to self check and take fragmin if I need it. But Yes my INR was (with their computer) out of control. Now it is not out of control

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I wonder also if you have done the doubletests between the vein-test No and the selftest (fingerprick)-No as they can differ. If you are Lupus Anticoagulant (as you do not know today if you are) the difference between the two readings can differ greatly.

That you must find out. The doubletests should be done within some hours and the vein-test result be delivered asap as it is timesensitive.

Kerstin

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H Kerstin. Yes if my coaguchek machine is more than 0. 4 out of range with the clinic Coaguchek I have a Venous sample check. Usually the hospital and my coaguchek is very close on readings. It's more of a problem when new staff join the anticoagulation clinic and don't read my information. They try to treat me by computer dosing me and they say I DON'T need fragmin if my reading is below 3.0. I am lucky to have a voice to remind them of St Thomas protocol. If i didn't have a voice then I could find myself being treated incorrectly as apparently I am "the only person in the town who is being treated differently". That's why I go on and on with my story to let people know as I can't mention my town, but just know someome-here may not be getting the "proper treatmnet for them", if i am looked on as the only one. Everything that happens for me is done according to St Thomas and I am happy with that. I guess I am concerned that locally there may be people, who like myself arent being tested or treated in the correct way. neiher am I in a position to tell anyone. That is a Dr's job.or practice nurse. But only if they are up to date on what is happening. I am not trying to tell people their job, but I know how I have been treated incorrectly in the past and the effects it has had on my health. If i can be a voice for those who can't speak for themselves then maybe I have helped someone. If it helps another person not to be put through what I have had to deal with.

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Hi Peecue,

You have misunderstood; it is not the difference between two different CoaguChek-machines that should be compared.

It should be the difference between a vein-test at a lab that can send the blood quickly as it is timesensitive, and the test at your own CoaguChek-machine. You must do these test several times to find out if they show the same difference between them (or perhaps no difference at all).

If you have (like I have) Lupus Anticoagulant positive (which you do not know as you have not tested it before warfarin was started) you may have a great difference between the vein and the finger.

You have to find out that to be able to trust your own machine that it does give you the correct readings.

If I have (as an example) an INR of 5 with my machine I probably have 4.0 in the vein and that No. is the correct No. that counts! Hope you understand as this is exstremely important to be able to selftest.

Kerstin

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Hi again,

Well that was really a surprise! Then you can help eachother. Hope it will not be too difficult for you to get a Specialist and feel better with your symptoms.

Kerstin

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Hi aliking4. I have joint pain, pins and needles in arms and legs, dizziness, brain fog and fatigue. I’m newly diagnosed but my rheumy says I’ve probably had it for years (miscarriages 50 years ago now!) have had these symptoms for a long while and just got diagnosed. I live in California. Had all three tests, 12 weeks apart. First time and second time positive anticardiolipin was positive. 2nd time lupus anticoagulant was positive, and 1st and 2nd time glycoproteins positive, but first time it was IGM and IGA Positive second time just IGA Hope you can get all 3 done.

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Hi again,

You have answered an old question now.

Try to get a Specialits of Autoimmun illnesses (I think APsnotFab suggested a Dr in California (?))

Also try to get the right anticoagulation as soon as possible. That may help you with your symptoms. Those two things are the most important things with APS.

Fantastic you play golf and in the gym several times a week!

We are both around 75 (you beat me I am only 74) and know how important it is to have an active life with this illness.

I live on the 8th floor and I take the stairs as much as possible if I do not have something to carry of course.

Wish you the best...... Kerstin in Stockholm

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