Hello again, I hope you don't mind me coming back with more questions. I finally have an appt with my GP this week and am wondering if there is anything I should be asking him to do whilst I am waiting for the second anticardiolipin antibodies test? I feel as though I have been going back and forth to doctors for many years now with a variety of symptoms that have never really had an explanation or a proper diagnosis so I want to make sure that I'm prepared.
A couple of things have sprung to mind -
Around 5 years ago I found quite a large lump in the front of my neck and this was diagnosed by ultrasound as a multi-nodular goitre on my thyroid , I had a further scan 6 months later to check there was no change in its size, there wasn't and there was no further plan for follow up. Over the past 3-4 months I have been having some problems swallowing when I'm eating and think it may be something to do with this goitre. Having looked around this site I think that thyroid problems and APS often occur together. Is this correct? And if so should I be asking for anything other than blood tests?
I was told at least 10 years ago by my optician (and at every eye test since) that I have 'dry eyes' and have been treating this with Gel Tears and Hypermellose ever since. I wasn't ever given a reason for this and no other tests or referrals were offered. My eyes have been more problematic for around 6 months, I have blurred vision and pain in my left eye and both eyes feel much more uncomfortable and dry. There is a suspicion by the neurologist that I have had Optic Neuritis as the Visual Evoked Potential test in September was abnormal. Does APS cause problems with dry eyes and sight?
Additionally, I was wondering if the GP can do any other blood tests to check for 'sticky blood'? Can a normal blood test check the viscosity? or if there is any evidence of previous blood clots?
Thanks in advance
Mand
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Mand25
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Hi, a good idea to jot down your medical history in bullet points and also symptoms. Regarding Thyroid, testing is pretty dire, which is why so many people slip through the net, and why most of us save up and order our own far more detailed than the GP, Thyroid panels, which also usually include, D, B12, Folate and Ferritin. So many of us have been told in the past that our Thyroid's are fine, only to find out they are not, plus Hashimotos is often missed. Also you could email your GP or GP's PA the charity website, they may find it helps them quite a bit. The three main tests are listed under the Hughes Syndrome section, under 'main tests'
Best of luck while you await the next round of tests. The three tests are usually the ones that are done, unless in the past you were in hospital and tested while having a suspected clot, had a D Dimer test or something like that, then not easy to prove a past clotting history unless recorded by a medical professional.
Hashimotos can effect the eyes as well as Sjogrens, so it is important that your eyes are looked at thoroughly, perhaps the GP can refer you to a consultant for that.
I am not well versed in thyroid issues so I leave you in the capable hands of Mary APSnot Fab and others. I believe they are active with thyroid UK , which I believe is also a HU ( HealthUnlocked) forum. Might I suggest you also join that forum as well for a more in depth education in, “ all things thyroid?”
( I think several of our members here are also members of that forum, as the thyroid is often involved with APS.)
I however, would like to talk to you about your eyes. This is quite well versed in. I’m loosing my vision to ,” auto immune ischemic optic nerve Atrophy.
It’s abbreviation is IONA . Mine is from an auto immune disorder, APS.
It also is accompanied at times with neuritis, which is inflammation, ( if I’m in a particular,”flare”) so it can get worse then a little better, but the optic nerves are thinning. That I can never regain. That is from ischemia, not from , neuritis, which is inflammation.
1.I have optic nerve neuropathy ( optic nerve cell death) and optic nerve which is permanent
2. I also have optic nerve neuritis ( optic nerve inflammation) which rarely affects me. This waxes and wanes- depending on ,” flares.”
I would suggest photos of your optic nerves be taken to check for thinning of optic nerves. You will need a base line. I also suggest a neuro opthomologist if the tests reveal abnormal thinning. I have thinning , quite severe- I’m in the lowest 1st and 5th percentiles in both eyes for entirety of the nerves. For both ganglion and macular cubes.
I also have Sjögren’s syndrome.
I ams clotting with larger DVT’s and micro vascular levels as well. The venograms to eyes looked ok in the only scan done. ( by Neuro opthomologist.)
My APS specialty hematologist said this is all just a result of mini strokes ( ischemia) to eyes.
If you look through my posts, I did post pics of these tests in three separate posts. These are from 2017.
This is not a usual presentation of APS to have this as such a severe complication, so don’t be alarmed. I’m just presenting you the spectrum of i formation because I was left too long. Also, I’m an unusually difficult patient that’s not responding well to anticoagulation. Most patients respond very well to anticoagulation and symptoms halt.
I just want you to know what to make your GP aware of, and what tests to be asked for, and by whom.
The tests require no more than a simple eye dilation. My normal opthomologist was performing my annual eye exam and noticed my optic nerves looked a bit thin, and my discs were too pale. That’s when she took me back to another room where this specialized equipment/ camera was. She took the photos of optic nerves and was quite shocked . This was before APS was diagnosed. ( about 2.5 years prior to diagnosis.)
I lost quite a bit more optic nerve by the time of diagnosis.
Have this checked, please.
👀Here’s Lookin’ at you, Kid! ( and all the best with this upcoming appointment ❤️🌵)
If you get a positive test (second test) for APS then you should get a Specialist. That is very important.
As to your eyes; I am primary APS (only APS) so far and have had microembolies in my eyes or microclots and the symptoms resulted in Amaurosis fugax, double vision and Auras. Took only a couple of minutes.
When anticoagulated with Warfarin at around an INR of 4.0 these eye-symptoms have disappeared. We have too sticky blood that has to be thinned!
I also have dry eyes and dry mouth. That may be Sjögrens syndrom.
Several autoimmun illnesses go hand in hand (APS, SLE, Thyroidea, Sjögrens. Fibromyalgia can perhaps be one of those (perhaps Sjögrens) and MS is easily misdiagnosed as APS. That is one of the reasons that we need a Specialist of autoimmun illnesses who knows how to diagnose us and knows what we have and may be able to give us the correct treatment. It is very difficult to diagnose and differ between these autoimmun illnesses.
You just wait for the second test and ask for a copy of the results.
If you get a positive answer to your bloodtests, I suggest you buy "Sticky Blood Explained" by Kay Thackray. Good also for relatives to understand what is going on with us and for yourself to understand better your illness as Kay has got APS herself and it is a very good book about APS.
Good Luck and please let us hear how it goes for you.
A bloodtest for the antibodies can not messure the viscosity. There are 3 antibodies they test for APS. (Kardiolipinantibodies, Beta-2-Glycoprotein 1 and Lupus Anticoagulant). You have to take a bloodtest for your INR. A normal person (without anticoagulation drugs) has got a an INR of perhaps 1.2. If you start Warfarin your INR will slowly rise up to perhaps 3.5 - 4.0.
Some bloodclots can not be found if they are exstemely tiny. They can do an MRI but perhaps better a Pet Scan but still difficult to find them on a Scan of today.
Thanks for the replies everyone you are all so helpful and kind
The 2nd antibodies blood test can't be done until beginning of May - I understand that there has to be 12 weeks in between tests, is that correct? I was thinking more about anything I could do in the way of tests in the meantime, hence the question about blood viscosity - Is that the same as an INR? What sort of levels is the INR of someone with APS that isn't taking anticoagulants?
I already have to get some bloods done as I have had low B12, Folate and Ferratin and wondered if I could ask the GP for any additional ones such as INR? Or anything else? I intend to ask about the full thyroid bloods, although am expecting that GP won't do everything that's needed so if not will get these done privately through Mary's previous link.
I am quite concerned about my eyes because my passion is reading and my job as a social worker involves lots of reading and writing reports and a lot of driving. Other than the abnormal VEP test there hasn't been any other tests or clarity at all about the cause of my symptoms other than 'suspected Optic Neuritis', I think because the neuro is still suspecting MS. I lost the outer vision in my left eye for around 4-5 months, it then improved so that I could see again for about a month and now I'm having intermittent blurring in both eyes which seems to be getting more frequent. I will also press my GP and ask for a referral to an ophthalmologist.
I had a course of Folate tablets that finished in November and had B12 injections in November too but no Ferratin treatment despite the Neuro asking my GP to treat it. GP hasn't done bloods since the summer to check where the levels are now so will be asking him to do this when I see him on Thursday. I'll report back after I see him
When you see your GP on Thursday, ask him to be referred to an Ophtamologist. You do not have to wait for your second bloodtest to see that Doctor but tell him you have had positive antibodies for APS one test and waiting for the second. Some of those eye-doctors know a lot of autoimmun illnesses sometimes.
Thanks for the messages. It was the neurologist who ordered the second blood test, he did the first at the same time as my lumbar puncture - I think the aim at that point was to rule out other illnesses and look for further evidence of MS rather than that he was specifically thinking of APS as he hadn't mentioned it to me at my appt.
In his letter to me after my appt he was still saying 'probable mild MS' and the reference to APS was as a footnote to the letter (I suspect that the result came back after he had dictated the letter) and he said that 'Anticardopin levels were 69 which could indicate APS' but would need 2nd blood test and if this was positive he would discuss with me, he included a blood test form with the letter - he doesn't intend on seeing me again until August/September after a further MRI.
I made the GP appt because the neuro suggested medication for nerve symptoms and after researching APS I wanted to discuss taking Aspirin whilst awaiting the blood test, additionally I feel thoroughly fed up with just waiting and waiting while my eye problems get worse and pain and weakness in my legs gets worse. I also have some strange blue capillaries (?) that have started to appear on my legs as well as blotchy skin on my arms and legs, this started about 6 weeks ago but seems to be getting worse quite rapidly.
We have learnt here that some (I do not say all) Neurologists do not know that APS and MS have many symptoms in common. It can therefor be difficult to get a correct diagnose. They do not understand that we need to thin our blood and that it is our main problem.
I am not a Doctor but I suggest you ask your GP if you could try a Baby-Aspirin (75-100 mg is enough) each day together with food (better for stomach).
I started with Aspirin in 2002 here in Stockholm and was better but then had to continue with Warfarinlater on. With an INR of 4.0 I am today ok.
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