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Sticky Blood-Hughes Syndrome Support
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HELP PLEASE

Hi all I’m after some advice please. Here’s my story..

I am now 45 years old and basically I had 3 normal pregnancies/normal births between 1995-2001. In 2013 we decided to try for another baby from 2013-2015 I had 3 miscarriages. I was referred in July 2016 to a Obstetrician & Gynaecologist and then a Haematologist - after numerous tests I was told I had IgG anticardiolipin antibodies at about 8pglu and IgM anticardiolipin antibodies in the 30s and that I also was positive for a lupus anticoagulant - firstly can anybody clarify what this actually means??

I was told that I basically had Antiphospholipid Syndrome and told this would be the reason for my miscarriages, I was told to take low dose Aspirin and in the future if I did want to continue trying for a baby I would have to have start on heparin as soon as confirmation of pregnancy, but then there was no guarantee that the pregnancy would end successfully. We decided this wasn’t for us and decided to leave it and call it a day and that perhaps we should just be grateful for what we had.

During the last 18 months I have developed several different ailments/symptoms that resemble those of APS and feel my health is not as good as it should be and I am convinced it’s down to this. I’ve been back to my GP a few times with regard to certain issues and they fob me off and tell me that Antiphospholipid Syndrome is only prevalent during pregnancy. After my GP telling me I was wasting NHS time!! she finally agreed to refer me to a clinical Haematologist in May this year - I had 1 blood test and was told that it was negative for lupus anticoagulant and that the anticardiolipin antibodies are persistently positive at 47GPLU and 17MPLU and they would suggest an obstetric Antiphospholipid Syndrome and that basically I would only experience problems if pregnant - however I hadn’t been pregnant for almost 12 months after initially being tested and diagonised!! So that surely contradicts what they are saying?

Can you have Antiphospholipid Syndrome that’s only a problem when your pregnant and not generally - and can it just go away?

I would really appreciate anybody’s views or knowledge on this as I am at my wits end with it.

Thank you xx

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No, No, No, No,! Sorry but these are the reasons why GHIC the charity was set up - to educate Doctors and patients of the facts about APS/Hughes Syndrome! If you go to ghic.world and have a good look around I think you will get a lot of answers to your questions.

In brief though:

Can you have Antiphospholipid Syndrome that’s only a problem when your pregnant and not generally - This is controversial. Some say yes. But this is when you only test positive while your pregnant. In your case you are positive when your not so its different.

Can it just go away? - No - Thats a certainty, don't let anyone tell you that.

I was told I had IgG anticardiolipin antibodies at about 8pglu and IgM anticardiolipin antibodies in the 30s and that I also was positive for a lupus anticoagulant - firstly can anybody clarify what this actually means?? There are 3 tests that are done for APS, those are two of them which have been done for both IgG and IgM. LA is a complicated clotting test which is either positive or negative and yours is positive.

One question for you....did you get any relief from symptoms when you took the aspirin?

As you have not had any clots (other than miscarriages), then aspirin maybe all that you need as far as treatment is concerned. If you have been prescribed it then if you have not taken it, it may be something to start thinking about taking.

The fact is you have APS and need to see an APS specialist. Unfortunately you have seen a haematologist who is obviously not a specialist in the disease. If you look to the right of this page under Pinned Posts, we have a list of patient recommended Doctors listed in areas. Take a look and see if there is one near where you live.

Do not give up. You are almost there. Many of us have had this path or worse. Its important now however that you are having symptoms that you find someone who can treat you properly. You do not need all three tests to be positive in order to be diagnosed. You have had two tests that were positive and that is all you need.

I hope this helps. Please come back if you have more questions.

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Hi there, thank you so much for your reply - my symptoms seem quite minor given many people talk about collapsing lungs, DVT’s and strokes!

I suffer fatigue, some days I can feel quite normal and other days I’m SO tired! I suffer with a lot of headaches and more migraines than ever before and suffer with brain fog-my memory is not as sharp as it was and probably should be! My immune system is absolutely pants if I catch a cold it lasts twice as long as my families do and then normally goes onto my chest and I end up (eventually) being given a course of antibiotics which is never normally long enough and then I have to go back for another course, or if not within 2 weeks I seem to get reinfected!! I’ve stopped having the flu jab as coincidence or not I can guarantee I have cold/flu within 2 weeks of having it.

I get pins and needles in my hand and into arm.

I get blurry vision - the vision in my left eye has deteriorated in the last year (not massively but it has been noted as a sudden change) and recently I have developed ringing in the left side/ear, a hearing test shows deterioration in my hearing in the left ear, again quite a sudden change. Do these sound like symptoms other people may have experienced? What I don’t want is to get to the stage where something major happens in order to finally get recognised as so many others have done.

With regard to the Aspirin to be honest I’m not very consistent with it as Im banging my head against the wall with my GP I sometimes wonder if I’m taking it for nothing.

I hope I’m not going on too much. X

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How much aspirin were you prescribed? You should take it regularly with food because if you don't you won't know if its helping or not. If there are issues with aspirin you can ask for clopidogrel instead.

Your symptoms do sound as if you do need some sort of anticoagulant, but unless you start taking the aspirin properly and see how it makes you feel, you won't be able to persuade your Doctor to take you seriously. One thing Ive found is you need to humour these GP's. Do as you say and write a symptom diary. That way you can go back and say, Ive done what you asked and this is the outcome, now please do something about it.

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Thanks for the reply it’s very much appreciated, I’m taking 75mg?

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75-100 mg of Aspirin is said to be the dose.

Kerstin

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Hi, it would help both your and your GP if you had a referral to one of our recommended consultants, which are over on the right hand side of the forum under pinned posts. You need a consultant who fully understands the condition, not half of it. We usually ask our members to make sure their Thyroid, B12, folate, ferritin and vitamin D are tested, and be aware that thyroid testing is not great in the UK, a lot of us order our own private tests. The Trio of disease is often Hughes Syndrome/APS, Sjogrens and a Thyroid problem. I enclose this useful paper and the charity website:

the-rheumatologist.org/arti...

ghic.world/

I had dvt's during my first pregnancy, I was then not told about Hughes Syndrome/APS and it took a lot years down the line for me to work it all out plus my other conditions which have now been verified due to passing tests, alongside the obvious symptoms.

MaryF

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Hi Mary, thank you so much for your reply - my symptoms seem quite minor given many people talk about collapsing lungs, DVT’s and strokes!

I suffer fatigue, some days I can feel quite normal and other days I’m SO tired! I suffer with a lot of headaches and more migraines than ever before and suffer with brain fog-my memory is not as sharp as it was and probably should be! My immune system is absolutely pants if I catch a cold it lasts twice as long as my families do and then normally goes onto my chest and I end up (eventually) being given a course of antibiotics which is never normally long enough and then I have to go back for another course, or if not within 2 weeks I seem to get reinfected!! I’ve stopped having the flu jab as coincidence or not I can guarantee I have cold/flu within 2 weeks of having it.

I get pins and needles in my hand and into arm.

I get blurry vision - the vision in my left eye has deteriorated in the last year (not massively but it has been noted as a sudden change) and recently I have developed ringing in the left side/ear, a hearing test shows deterioration in my hearing in the left ear, again quite a sudden change. Do these sound like symptoms other people may have experienced? What I don’t want is to get to the stage where something major happens in order to finally get recognised as so many others have done.

I hope I’m not going on too much. Regards Leisa X

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My APS first started during pregnancy 28 years ago, I suffered three miscarriages but also gave birth to two beautiful girls five years apart. I suffered symptoms of APS during pregnancy including my girls arriving quite early, being tiny (IUGR), and I suffered very high blood pressure bordering on pre-eclampsia, I also had other symptoms but this was in the 90's and nobody even mentioned APS, or maybe they didn't even know about it!. Move on 16 years, suddenly out of the blue symptoms of APS appeared with a vengeance and I was finally diagnosed 28 years after the first signs of APS. So in short APS does not go away and can affect you when you are not pregnant!.

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Thenk you so much for your reply x

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I had 2 successful pregnancies. The 2nd involved placenta previa, but I took care with lifting and such and all went well. There were no circulatory problems. None. Then, AFTER pregnancies I developed DVTs followed byy migraines multiple mini strokes ( my MRI looked like a brain full of cowebs,) and finally, FINALLY! a diagnosis of APS and treatment. And warfarin became my best friend! So, your doc -forgive the judgementalism- is so not up to speed. You have symptoms, you test positive. End of story. Go find a doctor who knows more.

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Thank you so much for your reply, I have an appointment booked with my GP next week I am going to ask for a referral to an APS specialist - fingers crossed!

Regards Leisa x

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I was recently confirmed with APS and my results were: IgG >160 (High Positive), Positive for Lupus, and Russell viper venom time (DRVVT) was also positive which basically confirms the Lupus antibodies. It is interesting in 1994 I had a DVT and it proceeded to my lungs, they had me tested and my IgG was high positive and Lupus was positive. When I discussed this with my Hematologist he indicated that once you're postive you will always be positive.

In July of this year in which I was positive for APS they also performed a battery of tests (approximately 50-60) and many of these results confirmed APS such as Factor VIII, Activated Protein C Resistance, borderline Antinuclear Antibody along with others were considered abnormal. He has now referred me to a Rheumatologist (meet with him in Jan.19) and he will most likely perform more blood work to determine whether I have any Rheumatology Diseases.

Finally after 24 years I'm finally getting the help I needed in which I initiated this through my doctor to refer me to the APS Clinic at Toronto Western Hospital.

Don't give up you just have to be persistent to get want you want.

Hubbsy

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Hi thank you so much for your reply and telling me your ‘story’. I find it shocking that it takes SO long for a diagnosis and that people have to wait for something drastic to happen before things are brought to light. X

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That is ridiculous. It shows how limited the knowledge is of APS in the uK and outside. I am due to see a specialist on Tuesday after having severe issues for five years and then a stroke this summer. Even I have been told my symptoms are purely psychological and I needed to see a psychiatrist (I threatened to throw a brick at her face...)

Know you’re not alone. They’re still investigating if I have APS as I seem to be serro negative (can’t get a positive blood test which isn’t uncommon)

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Thank you for your reply it’s terrible isn’t it I feel like I’m constantly banging my head against the wall with my GP’s they clearly aren’t clued up about the condition and then make you feel as though you are going mad! The awful thing for you is that you have now had a stroke and it’s taken that to happen for somebody to actually sit up and do something! This is what I fear myself will one day happen if I don’t get to the right person. Good luck xx

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Thank you. If you truly believe you have APS try and get an appontment at London bridge hospital lupus centre. They accept private Patients without a refferal and the doctor i saw reduced me to tears because he LISTENED! It is expensive, but i would say it is 100% worth it xxx

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Thank you, I’ve managed today to get my GP to refer me to Professor Charles Hay in Manchester - I will see how I go there first but will definitely bear in mind going private as suggested if need be. Hopefully Professor Hay will be the person that can finally sort me out. X

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Best of luck and let us all know how it goes x

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No!! I have aps when I’m not pregnant!! And I have problems related to aps such as joint pain and fatigue and chronic headaches all the time. I do also have sle do it is difficult to tell if these problems are down to the aps or the sle but I’d say and the rheum would say they are down to my 2 auto immune diseases!

My anticardiolipin antibodies are always high have been for 18 yrs or so have been up to 260! I have all 3 and lupus anti coag.

So I really don’t know what urs are on about but I’d get some new drs if I were u.

Aspirin and heparin give u a pretty big chance of a successful pregnancy I’ve had 2 so very lucky but I know what u mean we are stopping now as it’s too risky as I’m nearly 40 too so more risk and don’t want to risk it and leave my 2 beautiful babies!

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Thank you so much for your reply x

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Thank you to everyone for your replies it is very much appreciated and it has really helped me get back on it and not to lose hope. I have seen a different GP today at my practice and as I live in Manchester I have requested a referral to Professor Charles Hay. Fingers crossed I’m heading now in the right direction x

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