What is a severe case of APS?

So far going by the checklist from the symptoms sheet taken from here: aps-support.org.uk/about-ap... I had:

1. Multiple strokes, only the last one affected me, specifically, my vision, the rest I was unaware of, but an MRI was done at that time and it showed multiple strokes.

2.My first pregnancy – I was so lucky to have a child but he was an IUGR at 37 weeks.

3.Three miscarriages after that all at about 1 year interval

4.Migraine with wirery zig-zag flashed on the side vision, then turn into headaches

5.Brain fogs

6.Recent development is dizziness

I was put on warfarin and was told to keep it between INR 2 and 3 (I go to a local blood collection clinic for blood tests). I still get migraine headaches and got a dizziness symptom that I have not had before. I otherwise feel ok, I get brain fogs – my main complaint. I also get tired very fast, but that could be that I am still recovering from my last stroke (May2nd)

My rheumatologist rescheduled my appointment from Aug. 11th to Sept. 20th. I would like to be prepared for it, and was wondering if, in your personal experiences, my symptoms would be considered sever by your doctors and thus warrant higher INR range as prescribed by Dr. Hughes (answer to question of the month here in the forum). Also to add, I had positive B2GP1 test done, the rest were negative. My IGM was elevated slightly at 21. I will be doing the second test for it this Thursday, Aug. 10th (12 weeks after my first) .

If there are any medical study links that would support your experiences and treatment plan I would love to get a link to those. Thank you very much!

14 Replies

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  • The short answer to your question is yes, you do need a higher INR than 2-3 because you have had arterial clots which normally need a higher INR than Venus. Secondly, if you are still getting symptoms on a target 2-3 it means you are not adequately medicated and it's a bit like not giving enough insulin to a diabetic!

    There are lots of videos, blogs and papers on here that will support your need for a higher INR but some of the studies don't support this. A good specialist will treat the patient not stick to studies so if your won't you need to find one that will. It's possible that you may need to add an antiplatelet to your warfarin as this can work well too. Plaquenil is also another mefication often prescribed that also has a slight anticoagulant affect.

    I'd also add that when you have one autoimmune condition, more tend to come along and join in. Sjogrens Syndrome is known to run with Hughes, so too is low Thyroid - Hashimotos. You should be tested for both and that does not mean just a TSH or FT4, it means a full Thyroid panel. Also get your Vit D, B12 and Ferritin checked as these can be low and make symptoms worse.

    I too had a stroke which also showed a number of others and it affected my sight. Thankfully it came back after a couple of months and a forced myself to do sight map testing. Having Neuro Physio will also help and improve balance and dizziness which can also be a residue affect of the stroke. It's early days in your recovery yet, it will take your brain at least 6 months to a year to recover, so spoil yourself and just relax. Sounds like you are doing really well. Also worrying about the possibility of having another stroke or panicking when you get new symptoms is all perfectly normal. You will settle in to this. We are here to support you if you need more questions answered.

  • Thank you APsnotFab. I have hypothyroidism (diagnosed after 1st miscarriage), and am taking Synthroid, and have been having regularly spaced test for TSH. I will ask my GP for a panel before i see the rheumatologist. I am taking B complex vitamin every day, but as well will ask my GP for those. I do feel very lucky that my strokes mostly didn't majorly affect me. I am very scared to have another one that would. I am still waiting for an appointment for a visual field testing and a neuro post stroke follow up, which is supposed to happen at this time, but i have not even gotten an appointment date yet for either. The wait times are so bad here.

    I exerciser regularly, so my balance is fine, the dizziness occurred just 2 days ago, and it was worse when i was laying down and turning my head which was very strange to me.

    I had an extensive blood work up during my hospitalization for the stroke, i will look through my med records to see if perhaps they did a full thyroid panel.

    thanks!!!

  • Just so you know, when I was recovering from my stroke, whenever I challenged myself mentally, and in the early days physically (because my balance was so badly affected), When I layer down afterwards the room would spin as if Id been drinking. I think this was just part of my brain working hard to re-map. It gradually got easier. Perhaps you had been pushing yourself? I had to pay for neuro-physio for the first 4 months because the wait here was so long too. Im glad I did because it did help recovery.

    We have other members that are in Canada and hopefully they will be along soon to chip in.

  • Oh and re the thyroid, many of us have found that a T4 medication like Synthroid does not work and we need some T3. I, on the advice of my Endo have moved over to NDT - Natural Desiccated Thyroid Extract. I find it better - so does Hilary Clinton!!

  • I agree with the answers you have been given here, so many patients with symptoms like you need a higher INR, and many on this forum have specialists supporting that, even though the main stream information does not, but as patients with Hughes Syndrome/APS some flexibility is needed due to our blood being thicker in the first place. I am also on NDT which appears to work very well, going on the linear approach with Levothyroxine/Synthroid, is not something I would consider for myself. Also if you are being tested at the moment, do get your main consultant to test your B12, Iron and D, as if your Iron is low, the thyroid will struggle to uptake any thyroid medication, and if on Iron, you need a four hour window when taking it away from the thyroid medication.

    MaryF

  • Hi

    I totally agree with what my colleague, APsnotFab, has has advised you.

    Dave

  • Hi,

    I totally agree with APsnotFab!

    I do suggest that you look at todays question "QUININE". MaryF (one of our Admins) gives example what type of bloodsamples you should order. Perhaps you have to pay extra for them but they are important. Perhaps you can ask MaryF.

    Good Luck!

    Kerstin in Stockholm

  • Thank you all so much for your responses! I will have to ask for all those tests. Looked up NDT, will have a chat with my GP about it hopefully she will be able to prescribe earlier than waiting for late September rhematologist appointment.

  • I would not hold you breath on NDT! It is an unlicensed medication so it will be up to the GP if they will do it as a named patient. I have had an 8 month battle with mine who has refused and has left me with NO thyroid meds at all! I am now having to pay for it all completely even though the consultant the GP sent me to wrote and said it was the correct medication for me and that was rubber stamping another consultant who actually put me on it to start with.

    I am now taking the battle to NHS England as I believe this has breached my GP's Contract by not treating a chronic condition AND I have my CCG's backing who have suggested I do that!

  • Oh no...what is CCG? I have noticed while searching the web for more info on NDT that naturopathic Dr. here in Canada recommend it. I would think they can also write a script for it, but i may have to pay. I will start with my GP and need to ask for additional blood work anyway.

  • CCG - Clinical commissioning groups are NHS organisations set up by the Health and Social Care Act 2012 to organise the delivery of NHS services in England.

    Not sure you have group like this in Canada?

  • Apsnotfab: what does "rubber stamping" mean- I have never heard this? Thanks, Cindy in NJ

  • A turn of phase meaning "confirm"! It comes from the days when documents would need to have a rubber stamp on them of the companies details or a seal of approval. This is now not used so much because of electronic documentation.

  • Thank you, I had assumed this but wanted to be sure, now I am, thanks. Cindy in NJ

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