I guess I am reaching out to the men on here who have APS. I have it and my mother had it. I have a 36 year old son, his wife has spoken to me about certain behaviours that she finds odd ie memory issues, doing strange things that are not logical to normal people. Misplacing items. He tells her his brain just feels empty ( I can totally relate that all of these things). He is fairly fit and does a physical job, but has awful varicose veins. No headaches migraines no DVT's etc. However he does have Coeliacs disease. He gets extreme fatigue as well.
It just sounds like APS but mine started with DVTs but looking back I know my symptoms started at school.
When he was young he was always ill, when he was ill he always got swollen glands.
Could these things be APS?
Am I overthinking things!!?
My daughter in law is very concerned about him.
Many thanks
Written by
Molly100
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The first thing I’d say is is your son’s Cealiac Disease fully controlled? Many of the things that you mention do sound a bit like uncontrolled Celiac especially the brain fog.
Even very tiny pieces of gluten can affect people for many months so he could be unintentionally being glutened and this could affect him. So the first thing I’d say is get that checked out.
If he is certain that it’s not the CD that is causing the symptoms then he just has to see his GP and explain his family history and ask to be tested. However without any blood clotting history you will know how difficult it will be to get a referral at the moment.
Hi Star13 thank you for your reply, you could be right I think he does underestimate the seriousness of the Celiac disease to be honest. I have sent your reply to my daughter in law and she will keep an eye on it. His father also has it and I know he is a bit lapse with it sometimes. My daughters son has it too and she is so strict with him and also with keeping gluten away from his work surface in the kitchen, everything is separate.
Hi 👋🏽 sorry this is a long answer but I’ve given u a bit of background info.
It may be worth a) reassessing how controlled CD is. Even a few crumbs on the butter can affect a celiac , as you will know! And b) asking for the APS blood tests.
I was diagnosed with APS and put on asprin around 2010. In 2015 (on holiday in Turkey), I had a blood clot in my brain. A couple of weeks later I was put on Warfarin. I couldn’t manage the INR it swung from 2 to 21 and involved several hospital stays.
After about 2 years, I trialed Clexane but had huge huge bruises across my tummy and an ‘egg’ under each injection site.
Reluctantly with no choice I was moved onto Apixaban.
I’ve had no further clots.
A couple of years ago aged 58 my husband had a stroke. Caused by a clot. He was routinely tested for APS as he was ‘young’ the result showed he was Lupus Anticoagulant positive. Nothing was said or mentioned to him until a letter arrived a year later informing him…
“In the blood test we took on ../../.. you were Lupus Anticoagulant positive. Therefore we would like to to arrange a blood test to repeat the test”
He did and when he asked his GP for the results was told they didn’t have access and the stroke consultant would give him the result. He had been discharged and so has no way of obtaining those results. That was a year ago.
In the meantime I was concerned for my son (31) as I am Lupus Anticoagulant Positive too. Our GP happily tested him and his test came back as Lupus Anticoagulant Positive too. They waited a few months and retested. The Lupus Anticoagulant was negative this time.
He is fatigued a lot of the time and has had times where he has more headaches and aches and pains.
I don’t know if my husband and son have APS too? Nor do they and no one seems to help.
It it a difficult thing - sometimes it can be positive and sometimes negative. I was positive on my first test but negative on my next. All I know is the Apixaban helps my headaches, aches etc. on my records it now says I am sero negative, which I am not happy about!
I was going to say it would be best for your son. To be tested, but after my husband and son I don’t know what to suggest.
We were told it is extremely rare for a non related husband and wife to both have APS. Although not rare for children and parents to have it.
I wish your son all the best and hope he gets some help and support. Good luck to you too. 💋 x
You’re more than welcome. I hope I didn’t go on too much! Thank you for your kind words.
I hope u can persuade him to get tested. He has seen what u have been through and prevention is better than to ignore it. A baby asprin would probably be all he needs so long as he takes it with food he should be ok. But that’s for the dr to advise. Baby asprin v clot/stroke mmm a no brainer (as the young ones say lol)
Yes I think APS has only recently been formalised and a clear test available. I watched a documentary once about Queen Anne (of England) where they looked at her medical history. The doctor presenting concluded that she probably had APS. It was interesting.
I’m still amazed that all three of us are Lupus Anticoagulant Positive! It’s quite a rare condition anyway. My son has been on the waiting list to see my Rheumatologist since August (I heard it is a year wait) it made sense for him to go to the one I see. My dad (scleroderma, Raynards and Addisons) and brother (RA) see her too. Such a strong family history.
This is interesting, I think - A few years ago dad was looking at his family tree. He found a great uncle was discharged from the army after basic training, suffering from Rheumatism- so it’s obvious he had one of the conditions himself. A young man obviously, probably on National Service. So he must have been suffering to have been discharged, especially in those days.
Let me know how ur son gets on. It took me a year to be able to ‘think’ properly again and following his stroke my husband isn’t right. Thankfully not too bad but not himself. His thinking is different. So if ur son can avoid that or anything else happening to him by popping a simple asprin it is best to know. Maybe show him my message. Happy to message privately if it may help. Good luck 💋 x
If I were you, if you don't get anywhere with the GP and actually the tests are pretty unreliable for some people. I would order a private panel of tests from Medichecks, the advanced Thyroid test, often Thyroid problems are not picked up in men, and also the B12 test is not great either, not unusual to have those two things with Coeliac Disease.
pmc.ncbi.nlm.nih.gov/articl... My GP did not pick up mine so I paid for private B12 injections, alongside with GP's knowledge taking B Complex with Folate in it.
i have DVT's in both calves , Kidneys and Left eye and small cronic infarcts in my brain. I also have migraines. However i do not have the the issues you highlight above.
Still learning about APS, testing, the related ailments, and symptoms that we all seem to suffer from. My paternal grandfather used to brag about his "Thick" blood. He, and his doctor thought that was a good thing...he passed in 1989 after suffering a heart attack and several strokes! It's unknown if he was suffering from APS.
Me, I'm a 63-year-old man, triple positive diagnosed in 2008. I am currently on 10mg warfarin daily with an INR of 2.5 - 3.5, but I always feel better the higher it is. The docs here in the states are more conservative when it comes to the INR, they want to keep it lower even though I feel much better when it's higher. Even when my INR is higher, I do not suffer the bruising like other people do on warfarin. I've recently been diagnosed with Glaucoma, not sure if it's related or not!
Hi everyone thank you so much for your replies. My daughter in law and I think his symptoms could be that he is not managing his coeliac disease properly. So she is going to be stricter with work services etc in the kitchen. He tends to pick things off his sons plates which has gluten in! Then if it is no better we will go down the APS route.
would his dr do a blood test my GP tested my 31 year old son last year. Unfortunately he has it (Lupus anticoagulant positive the same as me). He has been waiting since august to see the rheumatologist. Good luck something is obviously going on that needs reporting and investigation x
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