I'm new to all of this and really struggling to understand and manage my anxiety. I was diagnosed with a DVT and PE 10 weeks ago and was placed on Warfarin. At the time they said it was unprovoked but I've subsequently had a positive result for APS. A month into taking Warfarin, I started to get nausea, feeling weak and worst of all shivers that come and go. I also get up to urinate a lot at night (but this I have had on and off for years.) Does any of the above sound like common symptoms for APS, Warfarin or some other issue? Doctors think its anxiety.
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gazaeee
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There is a high likeliness that I was on Heparin and Warfarin when my bloods were taken and my bloods have only been taken once. I have read that Heparin and infections could lead to a false positive and that you really need to have you blood checked more than once for APS. Is this all true and the experience of others?
It’s only 7:00am here and I need my first cup of morning coffee to be fully awake...
But I’m here...
Firstly, yes. 12,weeks apart between the blood draws to make sure an infection didn’t flag up a “false positive “ of transient antibodies.
But you’ve had more than one clot now.
The heparin in your system will not affect testing- it’s only warfarin. And it’s only the LA positive antibody specifically, not the B2GP1 or aCL.
Also- when I looked at your profile to find out your nationality, gender, age, I did see you had asked a question to anticoagulation UK.
This was very telling!
It made me wonder at what number your INR has been set. ( you are describing symptoms of too low an INR.) Especially that drained , weak feeling- do you almost feel like you quiver- not fro the chills you described, but from the internal systemic problem/ sickness that is APS?). If so- when the INR gets set correctly, that will alleviate.
Also, were you prescribed a proton pump inhibitor with your warfarin? This med can cause this tummy upset you described.
I’m off for my coffee- god alone knows if what I’ve just said is coherent without it!
Also... it is normal to have some anxiety when you’ve been diagnosed with this life altering illness ... ( in the middle of a pandemic....I can’t imagine) and you are still trying to get it worked out and trying to understand it.
It’s not at all easy.
You will need a specialist on APS.
Also ... your INR will likely need to be right at 4.0 I should think IF if was 3.5 before , and you developed another DVT and you were in therapeutic range at 3.5
It all started with a clot in my calf which they did not classify as DVT for it not being in a 'deep' vein. They sent me on my way with some advice to just rest the leg, no meds and a follow-up scan for a week later. 5 days after that I started to get pain in my inner thigh of the same leg. Follow-up scan 2 days later revealed DVT for which they prescribed Apixiban. So I was at least at risk for 7 days without any medication during which time the Thrombus could have traveled from my calf to my thigh and on to my chest. My wife gave my calf a good/deep massage thinking it was just a strain! The DVT was treated as unprovoked because of my age (42 and because I had not been on any long journeys, although I did say that I was for a few weeks rather sedentary (off work spending much time on the sofa/internet) and perhaps dehydrated from reducing fluids because of my annoying night time trips to the toilet. They did not say this should or could have played a role.
3 days later I decided to see my doctor for some re-occurring chest pain that I've has come and go for years. I was thinking heart problems and by GP must have thought PE. I was referred immediately to A&E to check me over. They kept me in and decided to move me from Apixiban to Warfarin, bridged with Heparin as a precaution in case I was clotting while on the Apixaban. CT scan revealed a small clot on my right lung. Bloods were taken during this time (can't remember f I was on Warfarin at the time).
NB the chest pain I raised was not on the same side as the PE and was not from the PE so I believe it is quite likely that I already had the clot in the calf, thigh and chest before I was even started on Apixaban (but who knows)
I've been on Warfarin ever since (11 weeks and counting. Therapeutic range was set to be between 2-3 with an ideal of 2.5. I've not been super stable with my INR because of struggling to understand and manage Vit K but I've drifted between 2.1 and 3.1. The range was set before any bloods came back and now I am waiting for a follow up.
I didn't have any symptoms beyond the sore thigh for at least 4-5 weeks while on Warfarin but 6 weeks ago I started to get a selection of the following:
Bloating
Feeling of unsettled tummy with some pain now and then (worse when laying down)
Nausea to varying degrees
Tired limbs (even while in bed)
Shakes/jitters (which can last from 15minutes to a few hours) Feels like it emulates from my torso
There hasn't been much info or support with this all so I'm really glad that found this group. I accept anxiety could be playing a part but that shouldn't mean we can't be tested for things.
I had a good couple of weeks but this evening feeling very weak, slightly nauseous and a tiny bit shivery. I starting to wonder if it's low INR. They set my range as 2-3. I think I was closer to 3 previously and not feeling these symptoms. My last check Wednesday gone was 2.5 which I suspect has come down further since.
So sorry, I’m just now seeing both this post and the last one from 11 days ago . I apologize- sometime I don’t catch them all.
I’m glad to see you respond again and got my attention.
I have very similar symptoms- you could be describing me/ especially with regards to torso... I always feel “weak” and tremble in the mid section when this happens- like my abdomen could just give way.
My gastro tells me it’s “hypo profusion” to bowels. ( small clotting issues.) also known as abdominal angina. For me it caused gastro paresis.
I think it could be that you are also having chest pain due to micro circulation issues- microvascular angina.
Only a cardiologist with an in-depth understanding of APS combined with very thorough scans a Doppler of your heart and valves could make this determination. ( you need to be evaluated for vegetation on valves, ( Non infectious endocarditis known as Liebman sacks endocarditis can happen with APS - usually a sign of this might be pulmonary hypertension).
I have the chest pain and microvascular Angina and am prescribed nitroglycerin. Structurally, my heart is perfect. No problems at all.
It sounds like you really need a specialist in APS.
Yes I really do feel a specialist is badly needed. My local hospital doesn't appear to have one and it seems to be a real hurdle to get them to allow me to see a heamatologist.
Neither the hospitals Anticoagulation clinic run by nurses nor my local general practitioner have the say to increase my therapeutic range or request tests!
Hi, welcome, as a starting point, please make sure you have a recommended Hughes Syndrome/APS specialist, we can recommend some, if you tel us where you are located. It is normal to feel anxious at such a time, of diagnosis and trying to work stuff out, however the more you find out and the more informed you are, you may feel much better. Feel free to ask questions. The three tests are normally done twice, and twelve weeks apart. The frequent urination I had, was down to my untreated thyroid, (I was told it was fine for years, due to only the TSH being tested, once I ordered my own far more detailed tests I found out that I had low Thyroid function, once I addressed the poor Thyroid function, the night time, endless trips to the bathroom were greatly reduced. Also after menopause, in women the lack of Oestrogen can also trigger the night time dash!! I still wake up once a night, but a vast improvement to the almost constant desire to attend the bathroom, which was maddening at the time for a number of years.
However there are other reasons, including high blood sugar, so it is important to get to the bottom of why. We are not medically trained, however like a lot of people on this forum, we all learn from each other via our various experiences. I think if you genuinely have anxiety it is important to seek the help of some support, and I know at times the medical profession can pin this label to any symptom they can't make sense of! If you have any new symptoms, including the ones you mention, do take these up with your GP, who might also check to make sure you don't have a urine infection, re the chills etc, it is worth at least ruling that out.
Thank you Mary. I am in Berkshire England and am currently waiting to be given an appointment with a hematologist at the local NHS hospital. Would they be suitably qualified do you think or would I need to demand someone specifically for APS?
In terms of knowledge, sometimes I read and read and come to breaking point with what seems to imply being in a terribly helpless situation. I then stop reading until curiosity and a need to understand sucks me back in.
An the advice of a relative, I requested my GP to test my thyroid. I do not think it was a thorough test and it came back negative. If I may ask, what is the name of the set of thorough tests for thyroid and must it be done privately? They tested me for diabetes which all came back negative. PSA was negative and prostate they said was ok.
Before my chills began after reporting my frequent urination, they did a dip of my urine and said there was no sign of infection. Perhaps I should get that checked again.
Hardest part for me is worrying about what to eat, whether I should walk/exercise more or less, and what on earth is causing these symptoms.
Hi, I would certainly consider asking a question on here, a new question to see who in your area has used a specialist in the nearest large hospital, I would insist that your GP refers you to a specialist who fully understands this condition. You may need to be referred to London, perhaps if you can't get an in person appointment, you could do a video call, please ask your GP, and if you need a list of possibilities in London, I can give you the list for your GP. It is essential that you have a Haematologist who is fully up to speed, Prof Hunt at St Thomas is a good idea, a lot of us go there. MaryF
Hello, if you don’t mind- ( good morning, hello Mary!) I’ll gently join in here as well. Mary has very in depth knowledge on the thyroid, which commonly can run a bit low with Hughes Syndrome. ( Dr Huges calls it the “Big Three” and gives lectures titled as such. )
What does this mean? Well, often auto immune diseases like to come in gangs- once you acquire one, more often join in.
The big three that often are seen as a “three for the price of one” are:
Lupus/ APS
Sjögren’s syndrome
Thyroid syndrome ( either low thyroid or actual Hashimoto’s thyroiditis)
However, I wanted to talk to you about another reason ( far FAR less common reason) for frequent urination. Now that I see you have been investigated for common reasons( prostate, infection...)
This is a reason that is specific to APS and falls under neurology.
The blood can sludge before it actually clots. In this state it’s still damaging. It’s causing micro circulatory issues that restrict proper profusion. ( and other issues I’m no where near qualified to try to explain- it’s basically micro clotting. This would be a great question to put on your list for your hematology appointment.)
This can cause seizures in the temporal lobes. Partial complex seizures. Roughly 10 times more prevelant in the seizing population of “unknown etiology “ - which is 70% of epilepsy. They were found to have APS!
My seizures hit the fight or flight - autonomic nervous system- the amygdala and hippocampus. Very deep in the old dinosaur brain.
One symtom of the seizures and dysautonomia was frequent urination - especially at night. I couldn’t understand how because I was actually dehydrated from ileus. ( also urine had a distinct chemical burn smell- acrid, almost like I was on antibiotics but I wasn’t.)
My neurologist said the seizures were hitting the part of the brain that triggered diabetes incipidus. But only during the episode .
At the time I was tested in 2012 it was not known I had APS. It was only known I had gastroparesis , and dysautonomia. One bowel surgery after another. ( similar feeling to you... once it passes. Hypo profusion to bowels. )
I was also diagnosed with “undifferentiated connective tissue disease” due to an extremely high RF. My Rheumatoligist suggested possibly Hydroxychloroquine, but I declined because I felt like I didn’t want such a strong medication without a proper diagnosis.
I stopped going to my Rheumatoligist because I was getting sicker and sicker- and my neurologist had found the actual problem - seizures! Stop the seizures- stop the sickness!
Nope.... it got only slightly better .
Anyway - the story goes on that I eventually started clotting in my optic nerves and clotted with DVT’s- so it was figured out very quickly.
This has for the most part resolved once diagnosed with APS ( 2016) . If my INR dips too low I can have break through seizures, so I have to remain on anti epilepsy medications.
( find an APS specialist and make sure you are not having subtle seizures. You will need a neuro consult. I recommend Dr Paul Holmes for this in London. Likely you will get someone on his team.)
By the way, gazaeee, I do have a specialist APS team in London. I was clotting so severely and so suddenly despite warfarin, my Texas doctors wanted me to see an APS specialist. They had not encountered APS patients not responding well to treatment before. They were not quite sure where to send me, so they , along with my husband, decided on the London lupus centre.
I was lucky enough to have Prof Hughes co consult in my exam room with my consultant.
My first consult was in Feb 2017. I also see an APS hematologist and she sent me to her colleague, Dr Toby Richards, a vascular surgeon at UCLH.
I have some experience of London’s ApS specialty APS consultants and a very limited understanding of the NHS in isolated spot in England.
Thank you. I'm in the dark about the process for getting to see someone of your own choosing.
Pathways I'm familiar with are talking to your GP who know very little about APS...hoping you'll be referred to someone that can do something for you. Or going in to an A&E and hoping they'll do the right stuff with you. Was all of those you saw through private?
However, what I have learned is most always these specialists always have a practice through through the NHS as well.
Your GP can refer you since you need a specific specialist.
Often times there are specialists in your post code that are really fantastic. You will need an APS specialty Rheumatoligist, and hematologist. This is a “hybrid” auto immune disease of rheumatology, hematology, and often times neurology.
There is a list of APS specialists for the UK. It is perhaps under pinned posts, or on the ghicworld.org
I flew into Panama City and saw a fabulous specialist, Dr Frank Lu.
He was on Jenks Avenue.
He was a solo practitioner.
He was almost as good as any of the top London APS hematologists! He understood the importance of keeping the INR to 4.0-4.5 for me- personally at that time- and never missing a doses for three days if it got a little too high-
Just adjust the mg down a little bit- he said- never never miss a dose!
He was from China and trained in Italy and APS was a special interest he had.
Unfortunately he passed away about 10 weeks after I saw him. I don’t even know if he knew he was sick...
I recommend you call another hematologist in Panama City and ask who took Dr Frank Lu’s APS patients?
He didn’t have many- but a few,
I’m in touch with one other woman. I’ll try to find out who she settled on. But you are on the other side... of Florida. At least you are in the North...
I finally have a excellent hematologist in Texas now. ( at the time I saw Dr Lu I did not..)
Just had it confirmed that I also only had the TSH thyroid test done. Think I'll order my own test like you did. Are they finger prick tests or must you go in for a proper blood draw?
Hi, I have done both! The finger prick test is a bit fiddly, so if you go down that route do read the instructions and approach it in a relaxed manner. If you are on Levothyroxine you will probably need a Reverse T3 test added, if not so, then the one I did, which also includes an Active B12 test, which is also good, was with Medichecks, and called, Thyroid Check UltraVit Blood Test. so important to look at B12 and also Thyroid function as both very much affect circulation! Which reminds me, I must order the same test soon. MaryF
We have a Paramedic in the family so perhaps she can take the blood but otherwise is the sample required from a prick relatively large? I struggle to squeeze much out of a finger prick :s
I found it a bit tricky I had to spend a very long time with the preparation, I have done it twice successfully, however if you have a relative that can do a standard draw, the great, go for that as you won't have to pay for that part. Best of luck. Bottom line, if you are doing the finger prick version, don't rush it, relaxation is key. I prefer a blood draw myself. MaryF
I can relay to you a reassurance about warfarin I got from a great doc:" Warfarin has a bad reputation because most, MOST people who take it do so because they have a sticky SPOT in their circulatory system, and so, their blood can become unbalanced easily and they can have terrifying, often lethal, bleeds. But you have APS, which means you have an entirely sticky circulatory system. An INR of above 2 is thin for most people. For you, a high INR just means your blood is now acting normal." ( I think our disease is better called ' Sludge Blood.') ..." and furthermore, warfarin is derived from nature, and has no short term side effects. Its job is to thin your blood by inhibiting activation of Vitamin K. And that is what it does. A long term side effect can be thinning bones, as Vitamin K also regulates bone density. But don't freak out over warfarin being a dangerous drug. It may be for most people, but not for you.
My understanding is that sustained bone health is dependent upon: calcium, Vitamin K and D, and pressure from using the bone to do things, such as walk, lift weights. The body constantly recycles old bone as old bone looses durability. Problem with the much advertised bone strengthening pills is that they slow down the old bone recycling process, so, you may think your bones are nice and dense, but in reality, they may look good on scans but they have aged into weakness. So, another doc told me that since I am on warfarin for life I should take Vitamin D, keep up with healthy calcium intake and walk and lift weights.
Also with these not so nice symptoms I've been getting. They only started to happen after a month of being on Warfarin. I suppose I'm hypothesising that if it is the clots/PE or APS then I should have had these symptoms much earlier or before, but I never did. That's why I wonder if the Warfarin itself has triggered something or if I have some other undiagnosed condition
Today I contacted the Haematology department at my local hospital to go find out where I was with a referral...post my first APS diagnosis. Dissapointingly they said they do not talk or consult patients directly but instead advise through the Anticoagulation clinic which is team of specialist nurses!
Have you added anything new to your diet? After a consult with Cleveland clinic's Functional medicine department I went on their elimination diet. turns out I am allergic to cashews. when this was discovered, I stopped eating them and a variety of bizarre G.I.symptoms went away. so you might try keeping a log of foods eaten and symptoms experienced.
and remember: just because you have never had an allergic reaction to something in the past, does not mean you can't develop an allergy to it. Allergens stack up like water poured into a thin beaker. so that something that has never bothered you before, can cause a reaction it is laying on top of a number of other allergens that may or may not be known.
Interesting that. I'm pretty sure I've not started to eat anything new since my symptoms began and certainly not every day since then. Mary advised me look into getting my thyroid thoroughly checked and to get a referral to a specialist. Both of these things I'm looking into but it is a bit slow going right now as our medical facilities are all closed to testing and consultations.
Asides from the above, honestly at a loss as to what to do
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