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Sticky Blood-Hughes Syndrome Support
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Aps and aorta

Ive been diagnosed with APS about the yrs ago. Lately Ive experienced a bloated abdomen. It starts under my ribcage and causes alot of discomfort. There is pain deep inside right below my sternum. I dont eat mu

ch...no appetite. Also Im very tired and have no endurance, but I just chalk that up to the APS. Im a bit concerned though that it could be my heart. My late Mother had an aortic valve replacement...so Im wondering if I should request a cardiology appointment.

6 Replies

Hi and welcome. Where are you located? Do you have a designated specialist looking after you, who understands fully Hughes Syndrome/APS? We can't diagnose what your particular problem is, a lot of us get gut issues with this disease and ditch gluten, but I will stress here that any new pain or symptom needs investigation with your main Hughes Syndrome/APS specialist and your GP. It is advisable to check your thyroid function, plus your levels of D, B12 and Iron. MaryF

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Thanks. Yes I have a specialist in APS. I will talk to my doc.

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Hi and most welcome to our friendly site!

In which city do you live?

As MaryF already said all bloodtests should be taken and you must have a Doctor well versed in our illness. He or she must have knowledge of treating patients with this illness like other autoimmun illnesses. It is usually a Rheumatologist or a Hematologist. This is very important for your future treatment.

I have lung/heart-issues with HS/APS and I live in Stockholm/Sweden. See to it that your bloodpressure is normal and I have done several Ecocardiogrphys with doppler as I have a bit high Pulmonary Hypertension and two leaking heartvalves. I feel ok with good Specialists and I am today well and stable anticoagulated with Warfarin.

I suggest you read "Sticky Blood Explained" by Kay Thackray. She has got our illness herself and writes about the different symptoms and she also have heart-issues with it. There are two books about APS and I bought them here in pocket.

Best wishes and hope you stay with us here.

Kerstin in Stockholm


The following is a suggestion if and after you consukt with your APSDoctor:

After going to Cleveland Clinic Functional Medicine and trying out their suggested dietary changes with pro and pre biotics, I have been amazed at the effect this has had on both my gut and my overall health. You might have a gut biome imbalance, which has little to do with APS and which might be helped by a consultation with a functional med doc or a nutritionist who has been educated about gut biome ( this is fairly recent med discoveries.)

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Nadiart, welcome! Please go to your doctor and explain your symptoms.

With good wishes,


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Do you still have your gallbladder?


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