Sticky Blood-Hughes Syndrome Support
8,164 members8,384 posts

lots of questions

Hi Guys, I just had another INR (weekly at present) and I have dropped again to 2.1. I can't seem to stabilise, and my dose keeps going up. ( We are aiming for over 3) I am now on 14mg. That is the highest my GP has ever prescribed. How does that compare to the greater APS community? I have also agreed to a MRI after an episode a few weeks ago where I woke feeling off, and found I couldn't walk properly, was dizzy and nauseous (no I didn't have anything to drink - although it felt like I had had 20 beers!) I managed to stumble back to bed and sleep, where the next morning I woke feeling less severe. Most of the symptoms have resolved themselves, but I have a headache/pressure behind my eye. My vision seems ok. (I wear glasses anyway) I have had an unconfirmed clot in my eye before (it had resolved itself before I got to medical treatment - but I knew what it was) I don't remember a lasting headache like this. It took me a few days to start to worry about this and go to the Dr - as I suffer Dr fatigue, and they said they didn't think I had had a TIA? Any ideas?

And whilst I'm typing I wanted to ask - how many out there with APS have had their gall bladder removed? I seem to see a bit of commentary out there with regards to this. I have had mine out in March after months of pain and tests. I had no stones, nor am I fat or forty. I have not tested positive for Lupus, but from my reading of some other posts, I am wanting to review the tests conducted to date and what other tests they could do.

And lastly, I saw mention of people feeling like they can't catch enough breath, weight on chest sensation, neck pain. I am constantly sucking in big breathes, and don't feel like I get enough air, whilst my oxygen levels are fine. It interferes with me talking and eating. Drs have said stress, but I don't think so. (not that APS is stressing me out at times). I also have a pulling or straining feeling through my neck/throat. Nearly a bulging feeling. It feels odd, and again drs have no idea?

Wow that's a long post! I'm sorry- its just the more I read, the more questions I have.

6 Replies

What i think at once is that your INR is not stable and too often too low. Some of that symtoms I had before I started warfarin. I selftest today.

Take care



My Mom had a hietial hernia which she described as feeling like a pulling sensation on her throat.

And your description of constantly sucking in air reminds me of how I felt some 30 years ago when I was living in a house plagued by hiddenmold issues. No, I didn't have asthma, but it was close. We kept the house clean,but it was a 1story concrete slab house on bottom land that did not drain well. My symptoms resolved soon after I moved.


On INR, it could have something to do with your diet. For example, do you drink grapefruit juice? I was told that I should avoid it, as it blocks the metabolism of warfarin. Discuss this with your doctor, as well as your vitamin K intake.

I hope it is something easy to fix!


try going on line and look up foods containing vitamin k. If u don't eat a stable amount every day your inr will rise and fall. St Thomas's told me to keep to same amount of warfarin every day and watch levels. If down think of diet intake and vice versa. I found i'm very sensitive to green veg of any kind, so don't have any unless wish to drop inr.

Hope u find what works for you. Take care x


Good heavens! I find it curious that my INR has gone awry over the last 4 weeks too. A month ago it dropped to 2.1 - my INR target is 3.0, and the acceptable range is between 2.5 and 3.5. It's interesting to note that in the week prior to this discovery, I suffered from very unusual and severe dizziness - so much so that I had difficulty turning my head, walking around corners or simply turning around! I even went to see my GP and was given a 10 day wait so I went to a walk in clinic instead. The Consultant there claimed that I had an inner ear infection - the only snag was she couldn't actually find any evidence of one, and my ears didn't ache. And no, I didn't have the Flu either. The dizziness lasted till I was ordered to up my dosage of Warfarin. This didn't help as the next week my INR dropped further to 1.8! The following week it went up to 2.2. I don't know what it is at the moment - but I do generally watch my diet and avoid foods I shouldn't eat. I've mentioned this due to certain similarities with your situation. I'm equally mystified.


Thanks guys for your imput. I do watch my diet carefully, maintaining the same diet and vitamin k intake, but take on board that I might be sensitive to vitamin k and will discuss more with the doc tonight after my inr.


You may also like...