So I saw my rheumatologist yesterday. It's been a month since he found that I had APS and told me to take baby aspirin. I also take another blood thinner (non rx) and in this past month I have waxed and waned but it's the first since in a LONG time that I've felt ANY relief. So I was really excited about this diagnosis. Yesterday I went in hoping to get an rx for Lovenox since my headaches, brain fog, and pain are coming back. He flat out told me that APS is not causing any of those symptoms, but that "fibromyalgia" is the cause. He said that APS only causes issue if it co-exists with Lupus or another autoimmune disease.
I brought the print out from the Hughes website and offered that to him to illustrate the "mild" APS because it fits me so perfectly. He basically brushed the paper aside and told me to quit focusing on that as it's not an issue for me. He said that the baby aspirin was just a precaution to prevent a clot, but that my issue is fibromyalgia and not APS. I then explained that since I got really sick about 4 years ago, only the past month with the blood thinners has provided any response more so than anything else I've ever tried and that I felt it was improving the blood flow to my brain and connective tissue (at this point he is shaking his head).
I feel so deflated. I truly feel that Hughes has been my issue, and now that I don't have his support I feel so deflated. I am on state insurance so I don't have a choice as to the rheumatologist I see. I don't even know if there is an APS specialist anywhere near me.
I live in southern California, USA.
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ehc918
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I feel so sorry for you! I can understand how you feel as most of us have been to doctors that are not APS-doctors and do not understand and therefore they get scared when they do not get what it is.
You must try to get this APS-doctor. I do not know exactly how. Where are you from. I know we have asked you but I have forgotten.
We have many members from the US here and you can also look at apsaction.org APS-doctors in different countries that is.
I am sorry I can not help you to get your APS-doctor but at least you can be glad that you have got the APS diagnose. It is worth a lot to have a diagnose. Lots of our members have had to fight to get it.
Hi, your experience is not untypical, you might get some more local info from members on here, and there is this: apsaction.org/ Also be aware that Thyroid tests are unreliable and often that Fibro diagnosis is indeed Thyroid problems. Professor Hughes regularly writes about the trio of disease, Hughes/APS, Thyroid and Sjogrens Disease.
Thyroid’s “fellow travellers”
In a recent issue of your magazine “Harmony”, a correspondent in the Q & A section wrote, “I have been diagnosed with under-active thyroid. I still have lots of symptoms even though I take 50mcg of thyroxine a day. Can I take any supplements on top of this that might help?”
If your continuing symptoms are aches and pains, fatigue, ‘scratching’, dry eyes, migraine, memory loss, balance problems – take note.
As you know, thyroid disease, especially underactive thyroid, is recognised as an “auto-immune” disease. – and autoimmune diseases run in families. Many of these families have histories of other autoimmune disease.
Two of these conditions commonly – probably very commonly – accompany thyroid problems. These 2 conditions are Sjogren’s Syndrome and Hughes Syndrome.
Sjogren’s Syndrome. Henrich Sjogren, a Swedish eye doctor, described a condition which included dry eyes, dry mouth and rheumatic pains. Sjogren’s is now recognised as being due to an overactive immune syndrome. The clinical picture includes vaginal dryness, bladder symptoms (recurrent cystitis) and aches and pains (commonly given the unhelpful label of ‘fibromyalgia’). It is a common condition especially in women over 40.
And yes, it is commonly found accompanying a thyroid diagnosis (especially Hashimoto’s).
Hughes Syndrome: Recognised 30 years ago, this is another so-called autoimmune condition, called “sticky blood” by the media. The cumbersome medical title we gave to the syndrome 30 years ago is “Antiphospholipid syndrome” – APS – as the condition can be detected by a simple ‘antibody’ blood test).
The condition appears to increase the risk of ‘sludging’ or even clotting of the blood, leading, for example, to DVTs (vein thromboses).
Two organs appear to be especially vulnerable to “sticky” blood. Firstly, in pregnancy, the placenta. Sludging of the placental blood supply leads to poor nutrition of the foetus, to miscarriage and even to late pregnancy loss – Stillbirth.
Hughes Syndrome is now recognised as the commonest, treatable cause of recurrent miscarriage – some women having suffered a dozen or more miscarriages.
The other organ particularly affected is the brain. Perhaps the 2 commonest ‘brain’ symptoms of Hughes Syndrome are migraine – often severe and dating back to childhood, and memory loss – sometimes mild – but occasionally bad enough to lead to worries about Alzheimer’s.
Other ‘neurological’ features are pins and needles, balance and visual problems (frequently misdiagnosed as ‘multiple sclerosis’). In extreme cases, patients can suffer TIAs (transient ischaemic attacks) and stroke – indeed, one study found that 25% of young (under 45) women with stroke tested positive for Hughes Syndrome.
Of course, the impaired circulation can affect other organs – the heart (angina), the limbs (clots and “claudication” – pain the calves on walking) – the gut (“gut angina” – tummy pain after a big meal).
Recognition
Hughes Syndrome is now becoming recognised internationally (at an international conference in October, 600 clinicians and researchers met to update knowledge of the condition).
Thyroid’s fellow travellers – Important to recognise?
Both Sjogren’s Syndrome and Hughes Syndrome can and often do, respond well to treatment
Sjogren’s – in particular the fatigue and aches and pains, often respond surprisingly well to an old fashioned medicine – quinine (the agent used is Plaquenil – a safe and widely used medicine).
Hughes Syndrome usually responds well to treatment of the ‘sticky blood’ – with either baby aspirin (75mgs once a day) or with heparin (now widely used in Hughes Syndrome pregnancy), or, in more severe cases, with warfarin.
The results have been spectacular – the pregnancy success rate in Hughes Syndrome, previously less than 20%, is now over 90%.
And one of the most satisfying results is the disappearance of migraine attacks and the improvement in memory loss, seen when simple anti-clottng treatment is started.
So, Q & A lady, don’t just think Thyroid or ‘supplements’ – ask about Thyroid ‘fellow travellers’.
For further information (including the monthly ‘blog’ “Listen to the patient”, contact:
Years ago I was convinced I had hypothyroid. I have done the research and had extensive testing (t3/4, free t3/4, reverse t3, abs you name it!). Had TONS of autoimmune tests. Other than slightly elevated ANA, mild cardiolipin abs, EVERYTHING has come back normal.
I feel very lucky when I read a post like this. My rheumatologist, when finding I was going to UK, organised for me to see Dr Khamashta at the Londonbridge hospital. I get so cross when I hear of doctors dismissing patients symptoms. If it doesn't fit with what they "think" you have, they dismiss you.
My rheumy was very open in discussing APS but after consults it seems I may also have SLE (some of us are luckier than others!) Can't help as far as a doctor goes (I'm in Australia) but keep looking for that doctor that actually believes in your symptoms. As a result of my UK visit I now also have the name of a consultant about an hour away who specialises in this syndrome.
It's taken me a few years to find the right person but with the right treatment I'm optimistic about feeling great most of the time. When I'm not-at least I have a reason why.
I was diagnosed by a doctor who now practises in Kentucky. Hopefully you can find an APS experienced doctor who is closer to you then that.
But do switch doctors; he does not seem to be acknowledging established protocols. aPS is indeed an issue often related to lupus. But it is it's own syndrome now:primary, not just secondary( to lupus) APS and though some patients test positive on the cardiolipin antibody AND the ANA ( for lupus,) APS patients often test positive just for the one. Or the beata 2glycoprotein test.
Exactly what is going on with the mechanisms of APS are obscure. ButDr Hughes showed way back in the 80s that a strange kind of lurching gait called " Jamaican Ensepholopathy" was actually caused by tiny blood clots obstructing neural and muscle pathways.
So I find it odd that doctors can stubbornly insist that APS only produces major, easily found clots --heart attacks, DVts, Pulmonay emboli, strokes --but never tiny ones that cause headaches, balance and gait problems or tinnitus. Because --administrators -- Correct me if my addled memory is wrong! -- one symptom which lead the youg Dr Hughes to his revelation was the common blood profile of patients who shared the same wierd muscular and neurological symptoms! -- which were caused by tiny, not major, clots!
Before I was even aware I had APS it had, over time, caused the TINY CLOTS that clogged up
my kidneys. It took two month in a Seattle hospital to get a diagnosis. I've been on dialysis the last 4 years in addition to daily Lovenox injections and baby aspirin. Still waiting for a transplant
but the antibody issues make it very difficult to find a match. Has anyone else had kidney failure caused by APS/Lupus anticoagulant?
I am so sorry for your having to deal with this frustration. I hate that patients must argue so often with their physicians in order to get the best care! I don't know if you have tried seeing a hematologist, but the APSFA website does list a specialist on APS in Southern CA. I think you need to make your case very clear with the Dr. and though it may be hard/intimidating, stand up to him, and insist on a referral. If it helps, bring a friend/family member for moral support.
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