Sticky Blood-Hughes Syndrome Support
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Recently diagnosed.. tips ?

Hi everyone. My name is Lou, I'm 28 years old from Australia.

Its been a tough road for me since June this year, out of the blue I became quite unwell. Hives, problems with GI tract that were quite unpleasant then finally a 10cm clot in my leg.

After tonnes of testing, specialist confirmed APS and showing symptoms for lupus, raynauds and under active thyroid. Seems I've got some good genes in me hahaha.

I'm still struggling to accept the changes and deal with the vast symptoms. I have headaches every day, fatigue, heart palpitations and tingling sensations that run through my body. I felt my brain was getting weird sensations which freaked me out but MRI came back all clear. I guess all these symptoms are normal?

Any tips on how to deal with the diagnosis and not freaking out about every weird sensation would be much appreciated :)

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Hi Lou and most welcome to our site where we try to help eachother as we all have the same disorder. It is a friendly site I think.

First of all it is very important that you get a Specialist of autoimmun illnesses who knows to distinguish between HS/APS, Lupus (SLE), Raynauds and Thyroidea-issues. He or she also knows how to best treat you which in our case if very important.

When you say Lupus I do not know if you have tested positive to one of the 3 autoantibodies we test for APS which is called Lupus Anticoagulant, or if it is the autoimmun illness SLE (Lupus) you mean.

Some of us (like me) have micro-emboli or micro-clots and they are not seen on a Scan of today as they are too tiny. Still they do damage to our body. I have all the three antibodies positive in high titres all the time since 2002 so I could be diagnosed that way. I had also neurological symptoms as I think you have also perhaps.

Try to read "Sticky Blood Explained" by Kay Thackray. She has our illness and writes about a lot of symptoms and she has also heart-issues and neurological symptoms. It is a very good book to understand how it is to live with this illness and suitable for relatives also to understand us better. It is a couple of years old so not the latest oral drugs in it but the symptoms we have we have always the same.

Hope you will stay with us here!

Best wishes from Kerstin in Stockholm

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I want to tell you also that first I had to try Baby-Aspirin (75-100 mg/day is enough) and see how I reacted on it after my TIAs. I felt much better for a couple of years but later on i was worse and had to start Warfarin.

You could test this Aspirin in a low dose and see how you feel as to your neurological symptoms.

Kerstin in Stockholm

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Thanks for replying. I've been pretty lucky so far with my doctors and specialists.

My GP picked up on the blood clot even though I wasn't showing signs (swelling, discolouration etc) but sill insisted on an ultrasound and took the appropriate course of action in terms of treatment.

Then I had a good haematologist who referred me to his friend a rheumatologist and they work together to look after me.

I've been tested for SLE however from my understanding they are coming back negative but specialist said I show signs of many symptoms (skin rashes, inflammation, joint pain and fatigue) and Have family history of confirmed SLE. I've been prescribed plaquenil and have been taking that for four months and haven't had the joint pain since.

I've been on warfarin now for four months as testing has been positive for lupus anticoagulant and high anticardiolipin and beta 2 glycoprotein 1 on more than two occasions and the confirmed blood clot.

I haven't heard of micro-emboli and I've heard of this book, sounds like it is definitely worth a read 😁

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Stay positive. its all treatable when they know whats going with these weird sensations in your body. They will eventually find cure I am sure. This site is brilliant - do your own homework take on board all the different scenarios, its going to be a big learning curb. Good luck. Seek out the best help you can find..... Stay positive

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What you are going through is distressing, both physically and psychologically. It is "normal" to feel anxious, afraid, confused and any other feeling.

It is important to have a specialist that understands SLE (not all rheumatologists even treat lupus patients) and APS/Hughes. You will also need an endocrinologist.

It is not unusual for people to have multiple autoimmune diseases. It is also not unusual for a formal diagnosis (especially SLE) to take considerable time. It is very tempting to search the internet and to find people offering all kinds of "remedies" in the name of "herbal" or "natural treatments." NEVER take anything without your doctor's knowledge!

It's also important to have psychological support from family and friends. Sometimes, it is helpful to talk to people who are neither a friend nor family. LUpus Patients Understanding & Support (LUPUS) provides psychological support, so if you would like to talk, PM me at any time.

With good wishes,

Ros

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Thank you for taking the time to reply. Means a lot to know there is support here. It helps with the diagnosis. I like reading up on everyone else's symptoms, definitely makes me feel less alone.

My rheumatologist is pretty good, he has a good understanding from previous patients/studies etc. He also collaborates with my haematologist.

Definitely still a lot to learn about the symptoms and management but I feel more positive now 😁

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Everyone goes through their ups and downs - that's "normal!" Support is available. All you have to do is ask

With good wishes,

Ros

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Hello and welcome to our forum, I will say straight away, that it is better to have a diagnosis than not have one. Whereabouts in Australia are you, as other members will be able to help you further. It is good that your underactive thyroid showed up, as often the only test done is TSH and it is highly unreliable, and if that is low plus Vitamin D, B12 and Iron also low, people sometimes get labelled with Fibromyalgia!

Have you been put on Anticoagulation and or Aspirin. also Thyroid meds, and please do make sure your Iron, B12 and D is looked at. If your Iron is low, you must take your Thyroid medication at least 4 hours away from any thyroid medication as it can stop it working, also if your Iron is low your thyroid wills struggle to up take any Thyroid medication.

Some of our members are also on Plaquenil, which is beginning to be prescribed in some cases for Hughes Syndrome/APS alongside the other medication.

People often think that you only get heart palpitations with a fast thyroid, but they can come about with a slow one also. If you continue to feel unwell, you might need to ask for more detailed thyroid tests, is antibodies, T3, Reverse T3 etc.

You will get a lot of support on this forum, and we all learn off each other by reading the posts that go on and the various responses.

Mary F

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Thank you for replying, means a lot.

At this stage I am not required to take thyroid medication. Ultrasound showed normal and tests haven't showed anything too concerning at this stage. They will monitor it for now as family history of SLE and Hasimoto's.

No family history of APS though, my nan has factor v Leiden. But I was negative to that, and positive to the three tests for APS and having already had the blood clot for no reason.

At this stage I have to take warfarin and plaquenil. Warfarin itself has been difficult to adapt too, my levels have been all over the place. But slowly getting a balance which requires less frequent blood tests.

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ok, but be aware that if only the TSH test was done for your Thyroid it may not give a very accurate picture. We have the same problem in the UK, so privately I do tests like these: TSH, FT4, FT3, TT4, Thyroid Peroxidase Antibodies, Thyroglobulin Antibodies, Ferritin, Folate, Vitamin B12 (NOT ACTIVE B12), and of course D. MaryF

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Hi Mary. Where do you get these tests done privately please?

Nicki

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Thanks for replying Mary but hadn't realised you were in Australia. I'm in UK

NICKI

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sorry will remove, brain ache etc.!

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There are several in the UK, all listed on the Thyroid UK charity website, but to give you an example I often use Blue Horizon and at other times Medichecks, watch out for special offers. MaryF

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ExcellentMany thanks

Nicki

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Welcome to another Aussie. It might not seem it, but you are 'lucky' to get a diagnosis fairly quickly! Once your meds get sorted out (and sometimes this can take time to tailor to your needs) you will be amazed at what difference it makes. if you've had a browse through this forum you will see that everyone has a different dose and med to hit the nail on the head and make you feel well again.

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Yeah I heard some people go undiagnosed for awhile. I was lucky my GP understood a bit more than most and referred me to a haematologist quick who is friends with a rheumatologist and together knew which tests should be performed.

I'm from Brisbane. Definitely hoping to find a few more Aussies on here as I red a lot of people are from the UK. Where abouts are you located ?

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I'm from NSW-foot of the Blue Mountains. There are not too many Aussies on here as it is a UK forum, we kind of stumble on it trying to do a bit of research about this disease. I've been pretty good for a while now-Winter brings on the Raynaud's but I've learnt to deal with it and live with it.

About the only symptom that still bugs me at times is double vision. Fortunately it doesn't last too long and mostly when I'm very tired. Mostly doesn't impact too much. Haven't had a headache for ages. I had done the rounds of all sorts of specialists until I ended up at a Rheumy who knew instantly what I had. I see him every 4 months and Haematologist every 6 months both are stars as far as my health goes. I'm glad to see that the tests for Hughes are being done sooner as Doctors become aware of it.

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Hi Ozchick,

My "doublevision" (difficult to explain but some sort of caleidioscope-vision) lasted a couple of minutes like the other neurological symptoms I had. Was gone with Warfarin though. I am sure it was a tiny clot I had.

Take care!

Kerstin

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Hi Kerstin, I had my eyes checked not long ago and the doctor thought it may have been a slight optic nerve injury from a clot before I had proper treatment for the APS. He explained that my eyes had (for double vision) a factor of 1 when 'normal' people had nil or .25 so my eyes are constantly adjusting and then when I'm tired they relax and I get the double vision. The 'flashes' across my eyes are completely gone and I may be stuck with the occasional double vision. I can live with it :)

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I am one of these. I cross both worlds. born in the UK and now in Aus

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Which state are you from?

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Queensland Sunshine Coast. NO specific doctors for APS. under. neurologist heart specialist and immunologist. where are you?

Fortunately my eyes have settled. and thank fully. and only play up a little these days. no more Uvitus and Iritis. They played up terribly when I told Plaquinil. My vision jumped around. and even on closing my eyes my eyeballs jumped around. Thank fully. no damage stopped the plaquinil pretty quick...!!!!

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I'm 90klms West of Sydney - close enough if I need to go there but far enough away that I rarely go! Plaquenil didn't do anything for me either yet some on here swear by it. Just goes to show how different our treatments are for the same disease.

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That is so true doesn't suit everyone. I have resisted. warfarin in the early days my fears and now due to doctors. but no doubt one day will be on it.

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Many of us, myself included, experienced a lot of enrrgy benefit from a gluten free diet.

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Hello Loui- Maree,

Wanted to let you know I had severe gastro troubles before diagnosis that led to many abdominal surgeries. ( when I was about your age. ) I’m niw 48 and a half and was only diagnosed just a year ago! )

I so glad you’ve been diagnosed now before serious damage has occurred- you will get this all figured out soon! You will feel much better and get the hang of it.

But what I wanted to tell you- is if for some reason- the gastro symptoms should continue, or become bothersome at some point in the future- ( I don’t want you to worry about this because I really do think this is going to clear up but “ just in case” scenario only) it may be due to two scenarios that are intertwined, hard to destinguish: the tiny capillaries that supply the nerves the innervate the bowels to move- parastylasis- can clot- ( segments paresis) so you will get bowels that can shut down- this causes mesenteric Vaso congestion. This is what would happen to me. But they weren’t understanding it. They knew I was in ileus- non mechanical. Couldn’t figure out why. They knew it was acting like mesenteric ischemia... they would scan for large clots- couldn’t find any. This was 6 years ago. Way before any thought of APS diagnosis. Also, I would already be “ self recovered” by the time I would be scanned...

I am now on Pamine forte, ( methscopolomine bromide) as it helps smooth muscle cells connect to brain ( I have dysautonomia) and this also seems to help with this -it’s a. Fine line as it can also cause the ileus in too high doses... and I’ve had vast improvements since warfarin. If my INR dips too low it can return but not nearly as bad .

Sounds like you have a great team. With the tummy trouble- I might also add ( since you are triple positive and have the extra naughty Antibody LA that likes to cause extra trouble... the wild child!) perhaps a referral to a neurologist to be evaluated to temporal lobe epilepsy would not be a bad idea.

“ What? I would know it if I had epilepsy!”

( I think I can hear you saying that to yourself all the way in Texas... because that’s what I said to my Neurologist when he wanted an EEG to rule it out...)

Yes! You might well not even know. I certainly was throwing many many partial complex seizures. Over a thousand a day. ( not grand mal- so I did not know.) These disturbances can be from little micro clots in the brain- these micro emboli Kerstin told you about are so tiny “ they are not seen on scans of today” in her words. Couldn’t say it better. If we are lucky that’s the case. ( as in not larger, or damage might be greater, like a full stroke... so very sad.)

The side effect of these seizures is a post ictal period you might not be aware of if these spikes are subtle, but can cause a little nausea.

I’m not sure what your gastro “ unpleasantness “ is- But while you are new to all of this, and it was my most dibilitating symptom and caused organ failure and multiple surgeries ultimately, and tied to the brain in the end in all its complexities ( yes and no...) I just think it should be checked- at least for a base line moving forward. You are very young indeed. As I was.

Any other questions, do not hesitate to ask. Robin Brey APS specialty Neurologist ( your Docs will have heard of her ) said to continue with my anti epileptic medication even though I am high intensity warfarin medicated . She is not my treating neurologist, only a consulting, and only for specific questions such as these.

I live near San Antonio Texas, but my team here sent me to London to the Lupus Centre, and Dr Natasha Jordan is my consulting Rheumatologist, and I was lucky enough to have Dr Hughes available and step in with her and co consult on my case as it involved involved so many systems , as well as had hit neurology so heavy handed with me.

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I call it unpleasantness, I don't know if it was severe. It sure was painful at the time and felt severe to me. I had diarrhoea for almost a month which turned to thin solid stools, bloody stools, mucuous in stool, debilitating abdominal pain. I was showing all the symptoms for crohns, but all the testing would come back negative. Had the doctors stumped. Continued for a month and then went away. Wasn't sure if it was the two courses of prednisone. That's when the other symptoms started and eventually got a blood clot.

This intrigues me though, I'll definitely look into it and ask the specialists. I'm sure they are willing to write the headaches off as a symptom, but definitely feels like something goes on up there.

I didn't realise I'm lucky to get a diagnosis early, I thought it was the norm.

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Nope ! Not the norm, But maybe it’s becoming more so now. It’s very possible!

The headaches are normal with APS. It used to be part of diagnostic criteria- and a good specialist knows it goes right along with APS.

Not really a true part of the classic seizure component.

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And the abdominal issues sound terrible. Mucus and bloody diarrhea sound familiar. It was the horrible nausea and occasional vomiting that led to X-rays during episodes. They would show ileus.

I would run fevers.

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