Help please, What do I ask my GP now?

[PepperT]

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?

[MaryF Administrator]

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

hughes-syndrome.org/

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: ard.bmj.com/content/62/12/1...

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

[PepperT]

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.

[MaryF Administrator in reply to PepperT]

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

[Tonkawoman69 in reply to MaryF]

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?

Andrea

[MaryF Administrator in reply to Tonkawoman69]

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. ncbi.nlm.nih.gov/pubmed/228...

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

[Tonkawoman69]

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

Andrea

[PepperT]

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?!

[MaryF Administrator in reply to PepperT]

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

[PepperT]

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!

[MaryF Administrator in reply to PepperT]

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

[MaryF Administrator in reply to MaryF]

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

[PepperT]

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

[Tiggercat]

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.

[PepperT]

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

HbA1c

Thyroid function test

Plasma C reactive protein

Blood haematinic levels

Serum Ferritin

[PepperT]

Hadn't finished the list!

Haemoglobin estimation

Total White cell count

platelet count

Mean corpusc haemoglobin (MCH)

Lymphocyte count

Erythrocyte sedimentation rate

Phew!

[momtomany]

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.

[PepperT]

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

[PepperT]

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.

[PepperT]

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.

[PepperT]

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?