Sticky Blood-Hughes Syndrome Support

“Vibrating” feeling in my head?

For the last two months or so I’ve had this strange vibrating feeling, as if my brain is bouncing around. It comes multiple times a day, and it doesn’t get better/worse with anything that I can figure out. I will be laying down and it hits me, or standing up. I was diagnosed with APS as well.

I’ve had vertigo before and dizzy spells, but this doesn’t feel anything like that.

I also have been getting numbness/tingling in my hands and arms along with what feels like my heart skipping a beat. My doctors know this and I’m going to see a neurologist and get my heart checked, but I was just wondering if anyone has had these symptoms before?

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Hi I note that you were having issues before with vein draws and as a result you have had a port inserted. What INR are you on now?

The symptoms you describe are ones I used to have, especially after plane travel. Since being on anticoagulation and also getting my Thyroid on the correct dose, these are thankfully things of the past.

Have you had you Thyroid properly tested not just the TSH? If not you should. Also make sure you are adequately anticoagulated however I don't know what extra risk that creates with a port. You should make sure these symptoms are discussed although the choice of a neurologist would probably not been my first!

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Yeah I had my INR tested today and it was 3.4 which is perfect for my range. I had the port placed about a month ago, and it’s been working perfect. I’ve had my thyroid tested before and it was perfectly fine, but I think with these new symptoms they’ll test it again. It’s just constant at this point and it’s been going on for a couple months and it’s just getting worse.

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Hi, I would really get your Thyroid tested beyond the doctor saying it is fine, on the NHS etc! They only do the TSH. Actually when I test, although it is a real pain to have to pay for tests I do these: TSH, T4, free T3, free T4, Thyroid Peroxidase Antibodies and Thyroglobulin Antibodies. I had funny palpitations before my Thyroid was treated, it went once I was adequately medication. Also some patients also develop AF alongside Hughes Syndrome/APS. However I would be in a rush to test my Thyroid in more detail as well as the various other symptoms.

Mary F

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I also think that it could have something to do with your INR. I have also had neurological symptoms and need an INR close to 4.0 to be without symptoms. I have Lupus Anticoagulant also and it can be difficult to keep the iNR in the exact place. Need selftesting and test my INR at home very often. Are you also positive to Lupus Anticoagulant?

My question: "Do you cheque the INR often enough to know it keeps in range all the time?"

Best wishes from Kerstin in Stockholm

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I also note that you have got excellent answers from APsnotFab 2 months ago and also the possibility to change to another Doctor who perhaps knows our problems with this illness better.

This is a very rare illness and so very few Doctors know about it. We do need though a Specialist who has had patients before and have the knowledge and the experience to answer your questions and give you the best solution.

Kerstin

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I am also LA positive, so they have been doing the physical blood draws instead of the finger pokes. My INR is very inconsistent between the rapid test finger pokes and blood draws so they’re just sticking to the blood draws.

Right now I’m getting my INR tested about once or twice a week. I got a port placed about a month ago and it’s making my life 1000% easier.

My doctor I see now is very familiar with aps, but I’ve gotten another appointment with a doctor who worked with specialists in the UK so that’ll be interesting.

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Why we selftest is because we have perhaps an iNR that fluctuates and then we need to test often to see that the INR is in its therapeutic range. Without Lupus Anticoagulant I think it is easier to keep the INR at a steady level.

My range is 3.5 - 4.0 but i feel best at 4.0 so I try to be there most of the time as I do not want any more TIAs or PEs or whatever. My heart-Doctor also told me to keep the INR at 4.0 last time I saw him.

What is your therapeutic range?

Kerstin

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