Sticky Blood-Hughes Syndrome Support
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New to forum. Love some advice!!

Hi all, I am new to the forum and would really appreciate some advice.

Bit of back history.... I have 3 children but have also had 4 miscarriages all before 12 weeks. The miscarriages happened sometime ago now and I was under a consultant after the 3rd loss. I was so distressed at the time that I find it hard to remember all of what was said but I was advised to try low dose aspirin as it might be because my blood clots too quickly. I followed the advise and am inclined to think it worked because I did manage to carry my 3 children to full term! Nothing else was said about the clotting and as I said its all quite hazy and I guess I just thought it was a problem only for pregnancies with me and haven't thought much about again until a chance conversation with a stranger at my work place.

We were talking about babies and then she mentioned her many miscarriages and how she ,like me, was told to take aspirin and then no more until 10 years later after suffering a DVT and then a stroke, she was diagnosed with APS. This got me thinking about my own experience and how i don't remember if I have been tested for it.

I took to the internet and now realise alot of health issues I've had for few years now could potentially be because of this syndrome. I was diagnosed with chronic fatigue 2years ago but I never really accepted that diagnosis.. I felt they didn't really know what was wrong so just slapped that title on it!

So being a little anxious after hearing how this lady had nearly died before a diagnosis, I went to the docs to see if she thought I was at risk and if she could tell me if I had been tested by my consultant before. She said she would assume that I had and treated me like I was a hyperchondriac ( which for the record I'm the exact opposite! I RARELY visit the docs!)

Anyway I pushed it because this has been making me a little worried and just want to know for my peice of mind. She finally reluctantly agreed to check my notes and get back to me. That was 3 weeks ago and still no word so I've booked another appointment next week.

But since I went last ive had a constant throbbing ache in my calf for 2+ weeks. Should I be worried??? I feel if I go back and tell this new symptom they really will think I'm just a hyperchondriac!!

Sorry for length of post! It felt good to write it down though ;) Any advice and experiences gratefully received. Thanks

24 Replies

Hi and welcome, you have landed in the right place. First things first with your history, and you are right to be concerned, if your doctor does not listen to you, you MUST pop off to hospital with that leg and be firm about not being fobbed off. Also please familiarize yourself with our charity website, it contains an awful lot of information, I also enclose a newspaper article or two, a short film, and a list of recommended specialists that your GP can refer you to. If possible to clear this glitch with the GP, take along your most trusted and articulate, friend, relative, neighbour or colleague etc to be you patient advocate.








Hi Mary, thank you so much for your speedy reply.. It seems a very supportive forum and I'm glad to have found it! Thanks also for the links, I will look through them now.

I was thinking to take my mom with me next time as she is a nurse and might help them to see my concerns. Will keep you posted!

Also was wondering if a clot in the calf would make strange sensations that I can only describe as a 'bubbling' feeling?? Sounds strange but that has been along side the pain for 2weeks.

Thanks again!


People can present differently, but really I would not leave that, it is better to be on the side of caution really. MaryF

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Hi and welcome to this friendly site!

If I understand you right you have not taken any bloodsamples for APS (there are three of them) yet and if that doctor has not answered you you might not have given any bloods earlier so they and you do not know if you have got APS.

As you also have symptoms I think your should look for an APS-Specialist. Where do you live?

If you still have that throbbing pain you should see a hospital and tell them your history and perhaps they will test you for APS there.

Hope someone will tell you how to continue where you live as i live in Stockholm.

Please stay on here as you can get good info and help from our wonderful members and Admins.

Best wishes to you from Kerstin in Stockholm

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Hi Kerstin! Thank you for your reply.. Very much appreciated!

Its correct that to my knowledge right now I haven't been tested for APS yet. My doctor promised to search through my notes and call or write to me to let me know...but still waiting!

I am in the Midlands of Uk,near Birmingham. Not sure where the nearest specialist would be but will look into it.

It would be great if they tested then find out I'm all clear...but the not knowing Is making me very anxious and I don't want to be in an emergency situation before its diagnosed!

My husband is Swedish by the way :) we are actually planning on relocating there next year so would be interested to know info on the care for you there.

Tack så mycket!!


You are welcome to Sweden and you know where to find me on this site.

I hope you will find a very good APS-doctor as Mary have given you some very good suggestions.

Ha det bra och hälsa din man!


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In the links I have sent you is the list of NHS specialists, including your area. MaryF

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If you have a pain like that in your leg, you should go to the Emergency Room. No one will think you are a hypochondriac. They take that sort of thing seriously. I went once. They do a ultrasound scan to make sure there is no clot. There was no clot for me. It was a painful nerve.


Do go to the ER and get the pain checked out. And you are entitled to a complete list of all the bloods which have been run and all the results. I hope you can get your hands on the old testing.

But at least from now on -- make sure you get a copy of every result. And keep your copies. In a waterproof folder. Forever.

During my country's conversion of health records from paper to digital my old, but clearly positive blood results went missing. Fortunately (or unfortunately depending on how you look at it) my blood work has been negative since 2004 when I went on a gluten free diet. (Apparently the gluten was urging my immune system to draw its rapier and go on the attack. And now, with no gluten to attack, my immune system is behaving more normally.)

But silly me! At some point I handed over all my copies to a new doc rather then go through the hassle of making copies. Boy! What a horrid decision.! That doc claims he does not have, and never has had, that blood work. (Though I remember handing them over to him and hearing him say, "Yes. It sure looks like you are positive for APS.")

So now I'm back to where I was before my diagnosis in 2001: no diagnosis again. And back to the former, "please take me for the serious, non-mentally-afflicted person that I am" patient demeanor. The hematologist who diagnosed me is a 5 hour drive away in another state. I'm considering going back to those long drives and consulting with him regularly again. He doesn't have my positive blood work either to share, but he knows I have APS because he diagnosed me and noted how dramatically my health improved when I started on warfarin. (like pushing the 'off' button on all my symptoms. ) Now the current hematologists want me off warfarin? Migraines, vertigo, mini strokes, recurrent DVTs -- all ended within days of swallowing a small daily pill. And they wonder why I don't want to go off that med? I think they are the ones who are being irrational here!

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If you're in the midlands I can strongly reccomend a referal to professor gordon at birmingham

City hospital. She is very knowledgable in this condition.

I hope you can get to the bottom of your symptoms soon.

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Thanks everyone for your replies!

If I go to hospital about my calf It might be easier to get the tests for APS there rather than battle my doctor to do it for me! I will let you all know how of goes. Thanks again for all advice!


Dear Nattylioness,

Fear not being not taken seriously, rather fear the consequences of NOT being. I am like you with a poor obstetric history and was advised to take asprin even after pregnancy. This was years ago and thinking about damage to the stomach caused by asprin, this was stopped in the 90s. I had a heart attack last October and only during the angioplasty it became apparent that I was NOT suffering from furred arterteries normally causing a heart attack. It was immediately suspected that I have APS and indeed I do.

This has explained so many other symptoms attributed to APS that I have which, I thought were a series of unrelated problems. It has also been confirmed now that there are pockets of minor changes "brain damage" due to poor circulation. Perhaps this might have been avoided had I remained on Aspirin all those years ago? If you don't have it...well good, but if you do and remain untreated then there might be more serious consequences rather than worry over what someone thinks??


Also, I can recommend the haematology dept at Heartlands Hospital and especially in Rheumatology.. Dr E Stathopoulou. She has been excellent along with the memory clinic at John Black Hospital, Coleshill.


Hi Twadd,

First of all I would like to tell you that I did like your answer to Nattylioness. A very good answer!

Can I ask you Twadd, as i read your post 5 months ago just now, what sort of Anticoagulation drug are you on?

I read what APsnotFab (our Admin) suggested that you ought to be on Warfarin and not only Aspirin. I guess your present APS-Specialist (I hope she knows APS) has prescribed a drug so you are well and properly anticoagulated as that is the key to feel good on this illness.

Have they done an Echo with doppler on your heart? I have heartissues also.

Keep well!

Best wishes from Kerstin in Stockholm


Hi yes, I take an anti platlet drug:Prasugrel any had a bubble echo done , is that a similar test to the one you mention?


Hi, I have not Heard of Prasugrel. Is that a good anticoagulation drug for APS?

I do not know what bubble echo is. I only have APS and heartissues. I just hope you are well looked after with an APS-Specialist and an anticoagulation drug that suits your symptoms.



Prasugrel is fairly new I think and I am due to have this reviewed a year after the heart attack. Hydroxychloroquine has been mentioned but I have reservations about that for the moment. The bubble echo is a test done under pressure to see if the heart is exchanging the blood through its chambers properly.

I hope that answers your questions. What are your heart issues?


Pulmonary Hypertension. Also leaking Tricuspid- and mitralvalves. They can see those things on Echocardiography with doppler.



Sounds like a similar test to view working of the heart. What is pulmonary hypertension?


To complicated for me to explain in English. Look for it on your computer. One of the symptoms of APS. It started with ´very high bloodpressure several years ago.



OK, take care x


Oh of course! I totally agree. I have actually been very proactive with this and despite normally avoiding the doctors Ive lately been pushing hard to try and get to the bottem of why I feel so ill most the time. But i haven't really found much support from them and like they want me in and out their room as quick as poss! But I still am going to stick to it and get some answers either way.

Thanks for the recommendation!

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Hello all! I said I would update you after I returned to my GP.

I had my appointment yesterday and left feeling very confused and not reassured at all. She said that she had seen i was tested and my results were negative. I had requested to see or have a copy of my notes..I got neither. So then I asked if I had the 3 tests they use for diagnosing APS or just 1. She then seemed to get frustrated with me,didn't answer my question and proceeded to tell me it seems like I want to be ill. I told her I very much want to be well and that's why I'm being proactive to get some understanding of why I have been feeling so ill for nearly 3years now!

At this point I was pretty upset but wanted to ask about my calf pain and the bubbing and aching feeling. She reluctantly took a quick look and said its prob varicose veins and they are nothing to worry about and don't come with any blood clot risk. All in all i was made yet again to feel like a problem rather than a patient. I would not be wasting my time sitting in her surgery if I did not have genuine reason to believe something is not right with my body! I'm 31..I should be feeling fit and well!

So can anyone tell me if they think given my history and symptoms that its worth me bearing with this and getting a second opinion?? all my symptoms from my chronic fatigue diagnosis could be APS symptoms also..brain fog, dizziness fatigue etc.

Has anyone been told they were negative but then been diagnosed with it? My bloodtests during my miscarriages were 10years ago... Could it be different now? Also anyone with APS got varicose veins and circulation problems in legs?

Alot of questions I know haha :) but i feel I'll get a honest informed answer from you lovely people here! Thanks


Hi again,

Thanks for the update!

If you still have pain like before in your calf i think you should go to an hospital at once!Also look at what Mary has suggested above. She knows so well what to do as she is very experienced.

Many members are seronegative APS but are diagnosed only on symptoms. An APS-Specialist knows exactly what he/she has to look for and that is why it is so important to get a Specialist as quick as possible and get the right treatment.

The antibodies can go up and down and obviously also quite vanish for some time. There are 3 antibodies to look for. The Lupus Anticoagulant (one of the antibodies) is important to test before starting warfarin for ex, as there can be false bloodtestresults.

Good luck with everything!



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