Help please, What do I ask my GP now?

Immunology/APS tests are now back and I just got a message left for me at reception saying all normal, no appointment, nothing!, GP should be ringing me this morning - but only because I asked, where do I go from here?, what do I ask him?, I'm just in a bit of a panic. On the Hughes website on the how to get tested info sheet it lists the test needed, I took this with me for the initial consultation and the GP looked at it but on the path lab form I couldn't see anything that resembled, aCL, LA or anti-B2GP1, could he have done just a general immunology test which wouldn't spot aps?

25 Replies

  • Hi you need to ask them if they have done the tests listed on our charity website:

    and you can also get the email address of GP secretary and forward them the audio transcript from our Patient's Day, which highlights with no word mincing Sero negative Hughes Syndrome, and also forward this paper:

    Send these, and make a double appointment with GP in order to discuss your options, if you feel stressed by all this, take a trusted professional friend or relative along to the appointment with you. Mary F x

  • Thanks, I'm not very assertive with GP etc, so I'm a bit worried I won't get anywhere or ask the wrong thing, get tongue tied or do something else stupid.

  • All the more reason to politely send a message by email to the secretary, marked for attention of GP, with the suggested things attached, and decide now who to take with you to any appointment you book, when you choose the person you think you could take sit down with them, and go through everything, and with a double appointment you will be able to discuss this. Best of luck. Mary F x

  • Hi Mary,

    Was it you family in the newspaper about you and kids having lupus and related illness? My youngest daughter at 5 yrs is going for a blood test this week as she has had nose bleed , a women's infection and she has a few in explained bruises over her body it could be a platelet problem which is another auto immune disorder . But not sure what to think as I've researched is and worst case it could be as bad as leukemia . She is clumsy. Falls over all time. .What you think?


  • Yes.. and actually, my daughter passed a test for SLE at age 5 and it was dismissed and I was told it was nothing, she did have Henochschonleinpurpura which is often a marker, again they did not know what it was.

    also they should look at thrombocytopenia. It is important to not jump to any conclusions, and often tests results do not go positive until after puberty.. but certainly the signs were there in my daughter and should have been acted on. She has Lupus and Hughes. Mary F x

    Both these disorders can show up with lupus and hughes

  • Hi,

    Just to help you. I didn't have anything come up on any of my blood tests with GP. I had to have a full blood screen with hematology. I had to have two screens with a space of 12 weeks between. I got this screen only Coz my vascular consultant believed That there was no cause of my blood clot. They need to do specific test for these illnesses. You have to keep bugging them if you think something is not right. I pestered for ages. They probably thought pain in bum. But I got misdiagnosed and was told wasting time but was diagnosed this May with Lupus and Hughes. I thought I was going mad and a one poi t thought the depression was causing me to think up all these symptoms. But I'm finding some of the symptoms disabling. Keep pestering , you know your own body. Xx


  • A different GP from the same surgery has now rung me and I am so upset I could just burst into tears. When I asked if the three tests for aps were done, I was told in no uncertain terms that all the tests necessary were done but they declined to tell me what they were and then politely suggested it could be something like fibromyalgia and I should make an appointment to see them some time! I am now starting to doubt myself, maybe I'm wrong and it isn't aps eventhough I tick all the boxes for the symptoms (only excluding the stroke/tia/heart attack), don't bleed when I cut myself and aspirin is helping with the symptoms - albeit not alot. Now what to do?!

  • You need to get copies of all your NHS blood test results and self refer yourself to London Bridge, it is the tests that add up! That is what many people have to do. Fibro often Sjogrens and Thyroid! Sorry you are having a tough time. Mary F x

  • How do I self refer?, I don't have much experience of this really, my GP sees me maybe twice a year for minor illnesses usually so he can surely see that I'm not a hypochondriac. I very much felt they thought I was a self diagnosing idiot that had got it very wrong. Just feel very depressed now, I actually thought I was going to get something sorted - silly me!

  • You ring them up and ask for an appointment, it is a private hospital, so you have to pay for the appointment, and you need to take your latest NHS results, (from your surgery along). Professor Khamashta has a shorter list than Professor Hughes. If GP will not refer you somewhere in the NHS, this, is a positive choice you can make.

    Mary F x

  • or you could self refer to a private specialist in your area. Listed on our charity website, if a visit to the GP, as suggested with an advocated to help you, does not get you a referral to the suggested NHS consultant experts in your own area. MaryFx

  • Pepper - Go to your GP surgery and politely ask them for copies of the blood tests you have had done. Wait there till they give them to you. You have a right to these so dont be fobbed off. If they say something like we have to ask the Doctor first, or we are not allowed to give them to you without asking, just say, "Please go and ask then because I have a right to a copy of my results and I will wait here for you to print them" and then just go and sit down in a chair and wait. If they still refuse such as say they cant talk to the Doctor then stay calm and politely ask to speak to the Practise Manager and ask him/her for a copy. He/she does NOT have to speak to a Doctor to give you a copy and will know full well they can give it to you.

    Remember it is your right to see copies of tests done on you just as it is your right to see your medical records.

    When you have the copies of the results please post them on here with the reference ranges so we can see which tests the Doctors have done.

    Once we have seen the results we can help you with some advice and then we will know if they have done the correct tests or not. We will also know if its going to be worthwhile you making a appointment to go back to your GP to try again or go privately. If you have not had the correct tests done then privately could work out expensive and you are going to have to try and convince your GP to do the correct tests.

    Remember keep calm and we are all with you on this. The key is knowing what tests were done. xx

  • Thanks for your help, I'll pluck up the courage and go tomorrow!

  • My husband is not a great one for asking for test results, but I was told, when he was diagnosed with cancer, to make sure I got a copy of everything, so every time he has tests now, I ask for a copy.

    PepperT, if you don't have the gumption to ask, then ask the surgery to put someone else down on your records as having permission to discuss your medical issues with the Dr's, and then they can ask for the tests. I am assuming (and APSnotFAB or Mary can confirm) it is your right to have a nominated person who can talk to Dr's on your behalf. I am now down everywhere Derek goes, as someone they can openly discuss all details of his case with.

    Choose someone who knows you well (i.e. a spouse, sibbling, adult child etc).

    Good luck.

  • I now have a copy of my results, I rang the surgery after all your posts. They weren't obstructive, although I was on hold a while!. This is a very long list.... I won't put all the figures in just the headings, I don't even know if they have given me the immunology results although I did ask for them. If anyone sees something familiar relating to test for aps please let me know.

    Abs Extract Nuclear (neg for Ro,LA,Sm,RNP,Jo-1, Scl-70 and CENP-B)

    Connective Tiss disease


    Thyroid function test

    Plasma C reactive protein

    Blood haematinic levels

    Serum Ferritin

  • Hadn't finished the list!

    Haemoglobin estimation

    Total White cell count

    platelet count

    Mean corpusc haemoglobin (MCH)

    Lymphocyte count

    Erythrocyte sedimentation rate


  • Right well the first one (Abs) is the antibody test but for mixed connective tissue disease not APS. There are no tests there for APS. Ive attached a link that explains that test. Its good that you have had your thyroid tested but where are the results? Did they give you them and the reference ranges? Have they just given you a list of the tests they did but not the results because if thats the case you need to ask for all of them.

    So plan of action.....get the results if you have not already got them and post your thyroid on here. Make a double appointment to see your GP. Tell them firmly that whilst you are pleased that they have done the tests they have not done the correct one for APS. They need to do aCL, LA and anti-B2GP1 but I think you already know that.

    You can take with you the papers from the HSF website to back up what you need to show your GP. If your GP is unwilling to do the tests ask to be referred to an APS specialist so you can get them done there. You can get the nearest one to your location from the HSF website. Make it clear by being firm but polite that you want the tests done and you will not give up. Point out your symptoms against those on the HSF website papers on Hughes Syndrome.

    Dont worry that they think you are a hypochondriac, its your body and you can do what you like if you feel you are not being heard. Try and take somebody with you who can back you up. Please let us know your results if you have them.

  • I'm on my phone so I must be brief. None of those test for APS. The same thing happened to me after my TIA. My lovely gp actually researched the correct tests before giving them to me because she knew of my past troubles.

    You need the antibody tests (cardiolipin or antiphosphilipid) beta 2 glycoprotein and lupus anticoagulant tests. They gave you basic panels but not much specific.

  • I have looked again at the test results that they have given me and they have missed giving me the immunology tests and results. Hmm, could that be on purpose?. Will ring them back and ask for them.

    Thyroid results say:- Thyroid function test (AT) Normal

    Serum TSH Level 1.35 mU/L 0.02 - 6.00mU/L

    Serum free T4 level 10.3pmo/L 8.00 - 18.00pmoI/L

  • Well Im not a Doctor and can only speak from my own experience with thyroid results and the lovely people on the THYROID UK HU community which you could sign into and ask a question posting these results BUT.... I would say that your Thyroid could also do with some delving into.

    As has been said so many times on here Autoimmune Thyroid and Sjogrens often comes as a trio. From your above results it would seem that you dont have Sjogrens but then we all know about seronegative blood tests!

    The Thyroid TSH test is a very inaccurate test to judge whats going on with somebodies thyroid. Most people with thyroid symptoms and who have had thyroid problems for many years know that really you need a TSH at 1.0 or below and the free T4 needs to be higher in the range. However the only real way of knowing is to have FT3 and FT4 tests done which will give a much clearer idea from the results what is going on with things like conversion for instance of the T3 to T4 which is needed in order for you to have any benefit. You also need to have the thyroid antibody tests done. Here is a link which explains which ones you would need to ask your GP for.

    So I would add this above to your list of things to ask your GP to test for and if they say they cant do them then ask for a referral to an Endocrinologist or if you get the referral to an APS specialist Im sure they will do it for you there.

  • Hmm, that's very interesting, my mum has sjogrens and has also had major problems with her thyroid which ended up with her having a thyroidectomy. I think there is a hereditary link with thyroid problems.

  • Well I now know that my GP didn't do any tests for APS despite me giving him the details of what was needed from the website, he tested for connective tissue disease instead!. I wouldn't mind that so much if they then hadn't tried to 'fob me off' by saying "all the necessary tests had been done". I have now made the decision and registered with a new practice, let's hope they are more understanding.

  • Well Done. And so that you know there is a genetic link with autoimmune thyroid disease. The first thing my Endo asked was did anyone in my family i.e. my mother have any thyroid problems.

  • Have seen my new GP this morning, what a lovely lady! She confirmed that my last GP had done the Lupus anticoagulant test which was normal but none of the others. Because she didn't have my medical records yet she couldn't order blood tests but has referred me straight to a rheumatologist to discuss my symptoms and family history, they can then do the tests. Can't believe what a difference a GP makes!!!

    How many others of you have had neg Lupus anticoagulant and positive on the aCL or anti-B2GP1?, would it need to be positive on all tests?

  • No it wouldn't, just one of the three antibody tests, done twice 12 weeks apart... BUT....many people (25%) are seronegative which means they can have the condition without testing positive. Remember it is NOT just about blood tests it is also a lot about symptoms and clinical history.

    I have already posted on the other thread about the Patients Day audio. If you have time try and have a listen.


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