Sticky Blood-Hughes Syndrome Support

Help please

In 2001 I had a blood test after a miscarriage and was told I had raised antiphosolids I gave myself certoparin everyday of the pregnancy. No further treatment

3 years ago balance went and I couldn't walk. Sent to ent but also took iron and herbs called floradix and after 6 months balance returned.

Have found myself in the meantime breathless a lot but never saw a Dr too busy teaching but it got more difficult and every sentence was hard. I ignored it busy I thought it would pass.

Periods have been all mixed up. Pill was changed it messed me up and I had a very long period light but long which lasted Oct to may June. Full blood count fine.

However my balance and swirling in my head returned memory problems. I saw this site back in March. I asked if it could be this. My go tested me 2 blood tests. Came back normal back in March.

Balance memory dizziness swirling in head better very briefly then heavy periods like a tap which weren't stopped eventually became anemic on a full blood count . They then tested me for ferritin which was 5.

I thought this was the answer and I think it might still be. I had a stroke scare on new years night though my hand was numb weak tingling and I did pass the fast test so I was taken via 999 to hospital and spent 3 days being assessed for stroke. Whilst I was in a noticed a lump in my left arm on the bend inside elbow on the bend if that makes sense. It aches it hurts but so too does my hand and then my right hand too. Although left far worse same side as lump.

The lump hasn't been investigated yet my hand burn some times my feet. My hip aches my knee aches and they. I am 42 I shouldn't feel like ghis I am bed bound mostly. I am taking gabapentin and waiting to see specialists meanwhile heavy periods hit again. They want give me any hormones to stop them incase I have cervical cancer. Waiting for biopsy result.

When I saw my gp today I told him about all the aches and pains spreading. Some times the sharp pain in my fingers wrists and toes comes really suddenly and then goes but the ache in hip knee and shoulder is a different pain. He said might be a connective tissue disease. I Google it and saw antiphosolids syndrome in the list. And I thought oh my goodness.

Does anyone have any thoughts???? Help or advice. I have lost my career. My life is no longer recognisable. So if anyone can relate to these symptoms I would be grateful. I am also very breathless. I have seen ent x2. A neurologist, a urologist I had kidney pain for a few months unexplained by ct scan. I have an appointment with a cardiologist in march a elbow specialist in a week. Mri scan no bleed on brain...ane atheists wouldn't give my any pain relief for recent biopsy due to possibility I had had a tia so very painful...everything is a bit difficult to solve. Is this all ferritin or could this also relate to antiphosolid syndrome. Apologises for any mistakes. Would be grateful for any advice. Help etc 😀

thank you for reading


9 Replies

Go = gp

Did = didnt

My autocorrection doesn't help me at all at times

Want = won't

Oh my if there are others do your best sorry. Harder to check what you've typed on a small phone screen. Sorry


Hmm you have a lot going on.

1. Yes you could be anemic lots of symptoms for that.

2. Sounds like you have bursitis in your elbows and possibly elsewhere.

3. If you are concerned about APS you need to get tested with the 3 antibodies for APS, plus full thyroid, ferritin, B12, and Vit D as symptoms could be from any of that.


I know loads sorry it's all a lot to unpick. But...

Because a tested positive for hughes in 2001 back in March last year I asked to be tested again. He did two blood tests for hughes and they came back fine.

I am low in ferritin 5 and now 19

Should I asked to be tested again for hughes .??


Yes! And your ferritin is much too low. As I say you need all the tests I mention above as your symptoms could be down to a deficiency from any of them. Oh and Vit D too.

I don't understand why GP didn't pick up your bursitis in elbows today? That would have been obvious. You need to go back and start again.


Some areas don't do the necessary tests in the same way or some don't do all the tests. In my area they did cardiolipin antigen but had to ask for information regarding beta whatever the name is blood test. I had to ask for a second opinion. I did get the chance to see a consultant at St thomas' London. Long way to travel, but worth it to getthe diagnosis. My balance problems told me - benign positional vertigo. One consultant thought it was MS so it took 20 years for me to get APS diagnosis



Yes, look for a Specialist who is specialized in autoimmun illnesses like Sjögrens, APS (Hughes Syndrome or Sticky Blood) Lupus etc. As Peecue says it can take many years without a Specialist to get a correct diagnose and the right treatment also. He is worth the money I would say.

Read also "Sticky Blood Explained" by Kay Thackray. She has got APS and describes the different symptoms we have. Good also for relatives to understand how it is to live with this illness.

Stay with us please and tell us how it goes for you!

Best wishes from Kerstin in Stockholm


Hi, be very firm, and when you can, write your medical history and symptoms in bullet points, have all three Hughes Syndrome/APS tests done again, plus your thyroid, iron, B12 and D all done, and if you get any more positives for Hughes Syndrome/APS we have a list of specialists recommended on here. MaryF


Thank you everyone for your replies. Some fantastic support and pointers. Thank you. I am so grateful. 😀 I will keep you posted. Heart felt thanks


Just wondering what type of pill are you on? Hopefully not the cocp? as this is dangerous for ladies with APS. I've presumed you meant the pill for contraception. Sorry if I've got that wrong.

Take Care


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