Haematologist says I don’t have APS...

[MemmaJ]

I’m in the UK and I had my first appointment with a Haematologist a couple of days ago - after chasing my GP For a referral since December...

I had two tests with raised B2gP1 Antibodies (one in July and one in October last year, the required 12 weeks apart) - but have never had a clotting event or miscarriage. I was only tested for clotting disorders because I had a placental abruption with my daughter’s birth in May last year, so it’s routine after that (she’s fine!).

He basically said that I don’t have it, and that the blood results are irrelevant in the absence of any clots, and also because the other two tests were normal/negative. My APTT was very slightly raised - which in all the reading I’ve done (I’ve done a lot!) suggests is also consistent with APS.

He insisted I have all the bloods repeated that day, as he thinks they’ll be normal this time as it was probably just raised from pregnancy(?) before - but even if they are raised again, he’ll ‘just ignore them’ (those were his words) - because I’ve never had a clot so it doesn’t mean anything. Which begs the question, why bother repeating them... anyway....

My family history of clots (Mum x2 strokes and a heart attack, and Dad PE) apparently doesn’t matter and neither do my symptoms (fatigue, headaches, brain fog...).

I did actually ask to be referred to a rheumatologist as I wanted to be tested for lupus in view of my symptoms, but GP referred me to a Haematologist instead. I have persistently low Ferritin so my symptoms are always put down to that (or stress, or something else..)

I’m just not sure what to do now. I’m waiting for these new blood results and if the Antibodies are raised again, I know he’s just going to brush it off (he said so himself) and I’m not comfortable with that. I don’t want treatment if it’s not needed, of course - but I also don’t want to be left alone until one day I maybe do have a clot..!

Does anyone have any advice please?

[MaryF Administrator]

Hi and welcome, a lot of us have had problems with being Seronegative, ie not passing all the tests all the time, I was consistently like this for years and also for Lupus, however I went on to pass the tests later on. Were you referred to a specialist off either our charity website, or on here under 'pinned posts' as if they were a professional not fully up to speed with their associated learning with this disease, it would not have been a very good appointment.

The dismissing of your obvious family history is not great either. Many of us started on a baby Aspirin on a full stomach once a day while we waited for the right appointment, some of us also self referred to The London Lupus Unit and paid for private appointments in order to sort this sort of problem out.

It is common to have a Thyroid problem with Hughes Syndrome/APS and some also have Sjogrens Disease. If your Iron is low your Thyroid will not work very well, also it is advisable to check out your B12 and vitamin D levels also. Be aware that Thyroid testing is very poor, only the TSH looked at, so many of us order our own private tests which gives a more accurate picture.

MaryF

[MemmaJ]

Thank you both so much for your replies. The doctor I saw is actually on the list of specialists on the APS UK website, so I had much higher hopes for how it would go... he did order a TFT within the bloods aswell (he wasn’t going to, but I asked) - and he’s checking my Hb and Ferritin again (my Hb is always fine, but my Ferritin always sits around 5 or 6).

However I have also been considering getting a private ANA test done to check for Lupus, at a cost of around £55...

And I did actually buy some baby aspirin yesterday and have started it today. He didn’t tell me to, I just decided to try it and see if it improves my symptoms. I’m not on any other medication so I figured it was safe.

[MemmaJ]

I’m only 32 (both blood tests were done when I was 31), and although my partnet’s attitude is ‘well he says you don’t have it, so don’t worry about it’ - my attitude is ‘he says I don’t have it until I get a clot... so let’s hope that if I do, it doesn’t kill me when It could’ve potentially been prevented’

[LindaMorrell in reply to MemmaJ]

My specialists. Neurologist and ........ disease specialist lol can’t think of the word said we will do something when you come back with a major clot. Neurologist even said I can positively diagnosed with a Autopsy lol. Everything directs to APS. I like you wonder if and when the major one will happen, who knows. I have gone from 17 - 60 years old. and still in the dark. Lots of people have died, Including my brother. Stay informed try and not let it rule you knowledh from sites like this will help. Don’t dispair.

The best info to diagnosis I ever had was from a UK Pysichian he checks the who body and your genetics. He said I would never be rid of SLE. The worst is death or MS but they could medicate anything the disease caused. That was around 1991. He was so right.... UK will have some good ones. I would spend my money on that, include your partner as understanding it all is very hard.

Good luck

[jagessar]

So sorry to hear of your difficulties,maybe you can request a second opinion? In the meantime follow the advice regarding taking Asprin. I had no knowledge of APS before being diagnosed fourteen years ago.I had breathing difficulties for weeks and GP thought it was a chest infection.Only when I collapsed in the street and was taken to A&E it was discovered that I had multiple embolii on my lungs and promptly diagnosed with APS.No history of clotting or miscarriage (three children) I had my stroke in A&E. My subsequent experience has been that there is a tremendous amount of ignorance in the medical profession regarding APS and suggest that you find a haematologist who specialises in this,mine does and has given me so much help with related health problems.Don’t wait for a serious episode.Hope that you get helpful support. Lynda

[LindaMorrell]

Good morning memma

Don’t dispair, It all takes a long time. I am now nearly 60 and would say my very first incident was exactly like yours but not diagnosed. Retained placenta 1976 when I was 17 no mention of Lupus or APS. One healthy baby one miscarriage one more healthy baby. About 11 years with no major problems and minor issues but nothing diagnosed, till it hit my eye. At this point to the mid 1980’s no clots. Lots of inflammation problems, tests eventually proved SLE Lupus. Settled and was good for years

Yes brain fog, lethargy, trigger finger, and other minor issues. All subsided Then 2004 ish major joint pains. SLE seemed the issue. Still no clots.

2016 major issues numbness tingling diagnosis started to indicate MS, lots of tests finding brain lesions. Still no clots. Lots of indications of MICRO clotting. Now perminant tingling and numbness plus annoying tinnitus though none of this at all debilitating.

Take aspirin if you can regardless take vitamin B’s and get 🌞 Sunshine. Watch your diet I am now trying to follow foods that can possibly prevent clotting as they don’t think warfarin would help.

Stay positive we are lucky that we are in a mega age of discoveries. People like us used to just die. Now even though they don’t know how to truely diagnosed. Our symptoms are starting to be understood.

I swim golf work full time have an enriched life. Yes lots of issues most of the time take blood pressure tablets have Mitral valve prolapse but honestly a positive attitude helps. Pain management with the least drugs possible is prob the way to go.

You will get through it. This site is amazing

Eat well stay well be positive learn lots and good luck.

Linda Queensland Australia

[Linpin22]

I sorry to hear about your experience with your GP and had a similar problem and I know it can make you depressed and very isolated. Like you I was told that all my symptoms were caused by stress. In my opinion a lot of GP s in the UK don’t have the expertise to really understand the problem and for some reason some of them just won’t refer onto a consultant. I was lucky as I found a sympathic ear by a Lupus sufferer and managed to get my GP be referred to see Professor Hughes ( approx 20 years ago) who was so wonderful and supportive. I would have never coped if it wasn’t for him. Can you go to another doctor? If not try and get him to listen to your concerns and try and get referred. Are you taking anything for APS? I’m taking a gastro resistant

150 mg aspirin, but you can take 75mg, though you need your doctor to support and give advice on this matter first.