Feeling so weird even in INR range.

[Jade]

I just don't know whats wrong with me. I thought I knew myself and all my symptoms but over recent week I have felt so weird and mostly my INR has been in range. I keep feeling weak like I am starving but I am not short of food. And my head feels odd sort of light headed, slightly drunk or drowsy. It comes in waves.

I have wandered if its as a result of tiredness from the flu and cough I had, or if its peri meno symptoms. I find it all quite scary. I drive a lot and run a business from home and my cognitive abilities are impaired.

Anybody else feel bad even when INR is OK?

[janekins]

Hi jade

Like you, I am in my 50s and have felt much worse during the last couple of years. In fact in April I was in hospital with stroke like symptoms and my INR was 3.5 which then raised to 5.1 by the time I was discharged!!

How long have you been on warfarin for ? I've been on it for about 11 years and am wondering whether being on it for a long time and my age is making it less effective?

I'm going to ask the experts when I go up to London in early december.

Sounds like you need to have a chat to your rheumatologist or whoever is looking after you. I hope this is possible for you as I know your hospital has had some ridiculous reaction to you self testing haven't they!! Perhaps your GP might be a better bet so they can just check you over.

Hope you feel better soon. Take care

Jane

[Jade in reply to janekins]

Hi Jane, I have wondered if warfarin is not working as well now. I have been on it 8 years. But I have just seen Prof Hughes and as yet he does not want me to switch back to heparin. Plus I had loads of questions for him but forgot half of them.

He did say that hormones will be having an effect.

Sadly I have nobody local looking after me and my fave GP has retired so I am not really under anybody friendly. GPs mostly do not understand anything about the condition.

I tend to feel that we basically have to put up with all odd symptoms as art and parcel of the condition. X

[GinaD]

Have you had your blood sugars checked? The weakness and confusion you describe sounds like one of my hypoglycemic moments. See sawing blood sugars often cause confusion and dizziness. I know it's hard to maintain a sensible, low glycemic index diet while on warfarin. I have blood sugar issues on those days when I am unable to eat the right foods at the right time. My life and sugar balance improved greatly when I took to purchasing, and carrying with me, those high protein nutrition bars. ( my favorite brand here in The States is " Zone Bars". --the chocolate/ graham and chocolate peanut butter are good choices. I also have taken to The Shire's practice of having 2nd breakfast ( which is usually one of those bars.). Despite adding this 4th meal my weight is stable.

[Jade in reply to GinaD]

Hi Gina, no I have not had them checked ever. Me and my kids have always been people who seem to get low blood sugars and both the kids do have auto immune conditions too. But as we are all thin and just need to constantly eat the docs were

not bothered. I have thought it was sugar related yet I am eating often as always, I almost feel that I am getting too much insulin coming in. I always carry nuts with me to keep me going.

I had wanted to ask Prof Hughes when I saw him but forgot. I need to monitor it really carefully. X

[Manofmendip]

Hi Jade

Yes, I started to get my weird 'funny turns' even when my INR was on target; I'm now on Fragmin and don't have so many but still get them. I went to see a audiovestibular consultant in London on Thursday, Prof Hughes sent me to see him.

He was marvellous and explained in detail why we get dizzy and feel shaky and strange with APS even when on Warfarin/Fragmin. It's to do with the tiny diameter of the blood vessels serving our inner ears, only 0.1mm. They have to be this small or the sound of our pulse would drive us mad. However, because they are this small he said they are smaller than some of our platelets and they have sharp bends so any sludginess of our blood and the ears don't get enough oxygen and we feel these symptoms. Similar things affect our brain stems too, he said.

Best wishes.

Dave

[Jade in reply to Manofmendip]

Thanks Dave, that is interesting. I have recently developed loud tinnitus in one ear and bilateral hearing loss. Prof Hughes says most definitely is APS caused but local audiology do not agree and basically dismissed it as an age thing.

I did want to go back to heparin but as yet Prof Hughes does not want me to but I can revue with him in 3 months after going back on plaquenil. If I ever get it past my GPs who are not keen to prescribe it.

It really is very complex this condition and most GPs have not got the first idea of the depth of it.

[Manofmendip in reply to Jade]

Hi Jade

Ask Prof Hughes to refer you to Peter Savundra at The Portland Hospital, whe's who I saw on Thursday.

Best wishes.

Dave

[Jade]

Yes I have wondered about it being an effect of the flu. Which I never normally get and I already have had twice in 2 months. Normally I go years without a cold. Also my tinnitus has gone louder lately so you could be on the right track.

I have had sterimar and it is good but last year it was taken off the shelves due to a production fault I have not tried to buy I since. I must try and get some.

[Willa]

I also had been lightheaded on an off, even with the slightest movement of my head. I would sometimes get waves of severe lightheadedness and nausea. I had my sugar checked and everything was all good. My rheumatologist put me on Plaquenil to help w/any type of inflammation. I am starting to feel better, although it could take up to 2-3 months to know for sure. Good luck.

[thomas_tz]

Hi, have you checked your iron levels? They could be low. Just a suggestion, I hope you feel better soon.

T