Should I push for a diagnosis of APS?

[mango20]

Hi all, hoping for some advice. Having been suffering for a few years now with various symptoms and not really getting to the bottom of them (despite eventually getting a diagnosis of vitamin B12 deficiency), my GP ordered some auto-immune blood tests as he thought he would check for lupus. The lupus tests all came back normal, but the cardiolipin levels came back as raised. Given my symptoms (headaches, pins and needles, dizziness,/balance problems, fatigue, poor memory...), he felt it was worth referring me to a rheumatology specialist.

So, 7 weeks later I saw a consultant (in Manchester, UK) and they repeated the anti-cardiolipin antibody blood tests. The rheumatologist was very reluctant to re-test; he was annoyed the GP had done the blood tests in the first place, as I had not had any blood clots nor any miscarriages. He felt that the GP had had no cause to go looking! Anyway, the levels were very slightly higher than when the GP had done them a few weeks earlier and I still have all the same symptoms, which from reading the information on the Hughes Syndrome website, are many of the low-grade signs of the condition.

The consultant's letter states that he doesn't think the raised levels are of clinical significance as I have no history of clotting or miscarriage.

Do I just let it drop, and accept that I do not have the condition? Or, do I insist on pre-emptive treatment to avoid any future blood clots and take advantage of the fact that these tests have been done prior to me suffering any serious consequences? If I can avoid having any DVTs or strokes, simply from taking asprin daily, then to me that seems incredibly sensible and appealing.

I would really welcome some advice. I know virtually nothing of the condition, the diagnosis protocols or even the significance of raised cardiolipin levels in the absence of any actual blood clots or miscarriage. I am more than happy to argue with the GPs at my practice - I had to do that plenty before I got my diagnosis and treatment for the B12 deficiency so am prepared to do so again if necessary - but equally am willing to leave it alone if there is no case to argue.

Thanks in advance!

[MaryF Administrator]

Hi there and welcome, actually you have there a very good GP, well done them for being so thorough, heaven knows why that attitude should apply about the blood tests. If your GP is as sensible as I think they are, they will advise a watch and wait and taking probably baby Aspirin once a day on a full stomach. So they will I am sure, keep an eye on you, as you will yourself, and just be mindful that you have passed these tests should something go in in the future, and hopefully nothing will happen, some are like this with the condition. However should you develop a serious issue we have a list of recommended specialists across the UK who your GP can refer you to at a later date if and when necessary. Team work

with your GP is probably best at this stage. As you GP is up for doing tests, make sure you look at your Iron, and vitamin D at the same, plus a Thyroid panel of tests as if often all goes together. MaryF

[mango20 in reply to MaryF]

Thanks for such a lengthy reply. I'm going back to see my GP next week so will see if he is willing to either treat me or refer me elsewhere. Are GPs able to diagnose and treat patients for APS even without an official diagnosis from a consultant?

[MaryF Administrator in reply to mango20]

They can treat you, and be guided by the blood tests, and in time if possible get them to refer you to one of the consultants off the charity list. MaryF

[Manofmendip]

Hello and welcome.

I agree with my colleague, Mary.

I was diagnosed by a neurologist on the basis of raised anticardiolipin antibodies, coupled with: migraines, spells of numbness in my fingers, pins & needles and transient blind spots.

Dave

[mango20 in reply to Manofmendip]

I didn't realise neurologists were a possible source of diagnosis. I thought referrals were just made to haematology or rheumatology. I've actually been referred to a neurologist already following some nerve conduction tests so may try to discuss it with them too. Thanks.

[Manofmendip in reply to mango20]

I was sent to one because I had neurological issues as my main symptoms.

I was lucky in that the Neurologist that I saw was up to speed on APS. Many on here have found Neurologists are the least helpful and some are in denial, as I found when I went to a different one.

[MaryF Administrator in reply to mango20]

Often Neurologists dismiss it! I enclose our recommended list of specialists: hughes-syndrome.org/self-he...

MaryF

[mango20 in reply to MaryF]

Thanks for the link. There are 3 specialists listed for Manchester on the list. Is there a way to find out if any of them is particularly sympathetic towards patients like myself who have not yet (fortunately) suffered any blood clots? There isn't much point being referred a second time if it's just to another consultant who is going to dismiss by blood test results and neurological symptoms due to the absence of any blood clots or miscarriages.

[Lure2]

Hi and welcome,

You have had very wise advises from our Admins and i do agree with them all.

I also had neurological symptoms and 3 positive antibodies so I started Baby-Aspirin. That helped at first but later on I had to go on with Warfarin. Try with Aspirin and notice if it helps. You have a nice GP but we need a Specialist and as you have symptoms I should do as APsnotFab suggests and look for someone on the list.

Read also "Sticky Blood Explained" by Kay Thackray. She has APS herself and she writes about the different symptoms and how it is to live with this illness. Good for relatives to read also. You will not find the latest drugs in it but the symptoms are the same even after a couple of years.

Best wishes to you and you know where to find us.

Kerstin in Stockholm

[mango20 in reply to Lure2]

Thanks for the book recommendation - it arrived today and I'm looking forward to learning more about the condition.

[Fra22-57]

The rheumatologist was wrong.Mine diagnosed me with APS and I have never had blood clots etc.I had been on RA biologic drug n few months later started with jerks and couldn't walk properly as my body was jerking across to pull me over.Although he did miss the lupus anti coagulant result he later noticed mine was very high n re orded it taken .I am on warfarin for life.

I would go back to your good GP and tell him what the rheumatologist said.Ask him if he will do a repeat test or send you to a different consultant

[consavon]

I have had the same prib as u. my PCP and I agrer the risk of a DVT and other things that could happen aren't worth brushing off, so w I'm on asa 81mg per and Vit D over the counter 2-3 per day to hrlp with fatigue. I'm in the Northern US so lack of sun may not be helping withthe symptoms. my RA doc seemed to right me off since Ra test was neg. as wellas lupus ones. I had about every other thing on the Hughs check list but DVT snd miscarriage. keep strong.

[Hidden]

Your GP seems sympathetic, so why not ask for an out of area referral to a specialist, that's what I did?

Either get them to refer you down to St Thomas's. Or, if you want somewhere closer to Caroline Gordon at City Hospital, Birmingham. Personally, if you want to be sure, and have sympathetic world experts look at you then get the referral to St Thomas's. Once diagnosed and under treatment you can always get transferred to somewhere nearer home.

[mango20 in reply to Hidden]

I didn't know you could be referred out of your local area. Good to know. Is St Thomas's the best place, ie the place with the most knowledgeable doctors for this condition?

[Hidden in reply to mango20]

You can indeed be referred out of area and not just for APS. Myself and my family have it done often.

Just explain to your GP that St Thomas's is the main place for treating APS in the country, and for diagnosing it, and you would like an out of area referral. Sometimes GPs are reluctant due to funding constraints, but push them and they can and will do it.

While there are knowledgeable doctors all elsewhere, but St Thomas' is arguably the best in the world. Professor Hughes was there until his retirement and still keeps in close touch. Just about all the consultants there trained under him. Professor Khamashta there has authored hundreds of papers. All the staff are active researchers not just clinicians. They run all the right tests and then some. Very sympathetic. And very specialised too. For example: APS and neurological involvement; APS and kidney involvement. etc etc. There is no greater concentration of APS experts in one place anywhere.

They also work very closely with the dedicated memory clinic at St Thomas's (they referred me there), and the memory clinic are well aware of APS.

All round, excellent expertise and care.

What I did, and it worked well was:

1. Get the diagnosis from St Thomas'. Keep all your paper work. They will willingly print out all your test results for you. This way no local doctor can start to doubt you.

2. Get treatment and stabilised at St Thomas'.

3. Then, after that, I decided to get transferred to a more local specialist (see list on this forum) for two reasons. The first was that I wanted a specialist nearby if I was admitted into hospital where I lived. This turned out to be godsend, because when I was admitted with TIA, that specialist sent her junior doctors across town that very afternoon to make sure my care was correct. The second reason was that St Thomas' is in demand. I felt I was stable enough, and I wanted to give someone else the chance to get fixed up.

4. Avoid neurologists if possible.

[mango20]

Thanks for such a comprehension reply - good to know that my interpretation of the situation is not too far off the mark. I am going back to my GP next week, and will try to persuade him to either treat me himself (with an asprin trial) or to refer me to a specialist. As for the neurologist, I am holding out no hope. I saw him about 18 months ago following my vitamin B12 diagnosis and the on-going neurological symptoms I was still experiencing and found he knew very little about it and was only interested in diagnosing or ruling out MS.

[jessie68]

I wouldn't trust any of them.I was diagnosed by professor kamashta in 2012 and put on fragmim.I have had 4 miscarrages,clots from my kidneys and a Tia which they sent as it was at another hospital.I was seen by 3 other doctors after kamashta left from the lupus unit and all have had different opinions. They said I do not fit the new criteria for A PS as my results arnt high enough.I was told on several occasions that they are now negative after 6 positive results.My neurologist took the time to go to the labs and look at my results and they were nearly all high positive and within range of the new criteria.I suffer everyday with MS type symptoms and can hardly walk.They are refusing to treat me because I have not had a serious stroke yet.My brain scan shows three lesions on the basal ganglia which they keep saying are age related but my neurologist said they are very significant.I have been told by my neurologist that they are refusing me treatment because of the cost and my neurological state is declining.Funny really as I saw a neurologist just before recommended by the lupus unit at guys and they said everything was fine.Im at the moment in the process of legal action against the unit as advisadvised by my neurologist. I am disgusted and distraught by this cover up.Our lives are at risk but we are all held behind a smoke screen to save money it's disgusting !

[Yllek in reply to jessie68]

Hi

You’ve answered a post that is 3 years old. I’m so sorry you’re struggling at the moment.

Maybe if you post your own new thread you would get some responses and help on how to move forward?

Take care

Kelly x