knew inr was low again!: For the last... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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knew inr was low again!


For the last few days I knew my INR was low!!

I have been extra clumsy, slurring, right hand/arm very cold, slow, etc.

I've been to the gym today.......tried Zumba.......10 mins' into it.......I knew I wasn't right! even more than normal ! when she went to the right I went to the left :( when she lifted arm up I tried to lift my leg up!! :( :( there was no co-ordination at all!!

I was laughing at myself (as usual!) ...but at the same time it is soooo frustrating!! :(

I think sometimes I push myself too hard & expect too much every day of myself? but I dont like it when I have to slow's not me ?!!

The last few days I've struggled to even get out of bed, I've had to virtually fall out of the bed! to make myself then have to get get up off the floor!!

Been going very dizzy too over the last 2 weeks too, dont know if it's the Meniere's, APS or high blood pressure causing it? so wish I could afford my own machine :(

My blood pressure has been high too according to my last visit to the docs'!

it still was a little high just too. :(

Just had blood test done at GP....& it is only 2.2!!! (my range is between 3 - 3.5) & thats only because my GP changed it from 2 - 2.5 up to that level as he noticed the difference in me if it went below 2.7 !

The comp' didn't advise me to take any extra warfarin than I'm already on tho' which is a little worrying?

Oh well....cant argue with a computer!

Away for a few days from Sunday onwards so shall try to relax!! going to Northumbria with some photography friends. :)

13 Replies

hi suzypawz i have always had problems with inrs al over the place 1.2 to 6.7 they have never been able to stabilize me . but when im off i can tell ,alot of the same as you were saying . doc,s use to question me when i told them i was off .tyey dont any more .i have a standing series, so i can test any time i want .witch helps with my condition .sept 13 th inr 1.6 ,sept 20 th 3.7 . we will see in a few days if it will settle down or will i keep climbing . i was 1.3 to 2.0 but now my target range is 2.5 to 3.5 ,trying to curve these headaches , anyways have a great weekend ,be safe may the force be with you . bbn jet

Hi Suzypaws

Most of that sounds very familiar with me (Not the Zumba though LOL) I know I push myself too much most of the time and then think I can get away with it, then in comes the dreaded fatigue and that horrid cold feeling and then I go to gobbledygook speech/ memory, cordination nonsense!

Amazing how having a low flaire of INR can affect our lifes!

Chin up, rest up and think of yourr Zumba lesson next week!



Hi Suzypaws

I totally agree with you and Garry as I KNOW I push myself too much when I'm not feeling too bad. I just can't help myself even though I know that it will come back to bite me! It's as though there is some inbuilt self destruct button in me that doesn't get defused until I am physically unable to keep going.

I've no idea if there is a technical medical term for this kind of illness behaviour or if there is any recognised 'treatment' or best way of tackling it. I have received several responses when I've asked ranging from it is because I am in denial about the fact that I have a chronic health condition to I crash because I am unfit and I need to do more exercise.

I don't know if this is familiar with anyone else but initially when I 'overdo it' my INR is OK and stays in range but then I find that if I continue pushing myself after anywhere between 3 and 6 weeks my INR crashes down into low 2s when I want it in the 4s.



Kaz I think you are right, the body has to catch up so when we over do it thats not sometimes felt until later. I go into cycles sometimes. Good, pain, fatigue. The other thing is that they say that this sort of illness hits a type A personality, which is someone who always strives to be the best that they can, thinks that no one can do anything as well as they can, must finish the job or else, in other words is highly driven to be the best so our own worst enemy! I dont know if thats true but I do see some of myself in that and I cant be told sometimes to stop even when I really know I should be. I know this is going to be a big issue for me when I stop my heparin and start warfarin, so I am taking heed from what you guys are saying!!

One question I would like to ask though, can you get these self monitoring machines on the NHS as I was reading that they were promoting self monitoring because of the patient choice thing and cost cutting?

Hi well for the last week or so have had low INR and I have been so clumsy and dizzy - did not realise that a low INR can cause these problems. I am new to this so slowly getting to know about Warfarin and levels etc. Its so confusing. I had a mini tia in March after not taking Aspirin due to major operation and because I wasnt taking it, I suffered from left side vision loss and then was put on a platelet drug and later a warfarin medication. I went to my Haematology appt on Tuesday and explained that I was getting dizzy, numbness and pins and needles on left hand side and a headache and then the consultant said my INR was low and he upped the warfarin and then it was back to GP at 09.. 00 this morning and it had only risen to 1.7 and then have to go back Monday for another INR check. It is wearing me out as rely on hubby to take me before he goes into work and then I cannot drive due to TIA as advised by GP.

It is good to hear other thoughts on APS and its effects.

Take Care

Yes - I am most definitely a Type A personality! Wish I wasn't when things aren't so good as I know I'm mine own worse enemy a lot of the time but just can't seem to stop myself.

I had to buy my INR testing machine myself direct from Roche. However, I count myself as being one of the fortunate ones as my GP has been brilliant and I get all the test strips and the lancets on prescription and he never quibbles about how many I use even when I may need to test once or twice a week. The only thing I think is rather unfair is that if you are on life-long medication for Hughes you still have to pay for prescriptions unlike other chronic, long term conditions such as diabetes and epilepsy.

I asked my docs before about having a machine...& they told me the NHS would let me have the 'strips' on perscription so I wouldn't have to pay for them, but the machines I would have to buy myself, they cost around £500 from I've been told. x

They are on offer at the moment at £299!

ooooooo.......where from? or is it any docs'surgery?!........or it off ebay :)

Go to this link and follow the UK promotional link.

Its direct from Coaguchek and valid till the end of the year.

A bit of warning to anyone thinking about using a Coaguchek to monitor INR. If you have tested positive for lupus antibodies the machine tends to give false high INR results compared to venous blood tests. Check out the small print in the information that comes with the test strips (no information on this with the machine unless the company have changed that since I bought my own machine).

I am positive for Lupus Antibodies and my GP and I have found that my Coaguchek over reads my INR by about 20% or sometimes more. Now that isn't too much of a problem when my INR is 4.5 on the machine as it still means that my blood is probably around 3.5 BUT it is a problem if my INR drops into the 2s.

I contacted Roche directly and they couldn't really give me any guidance on how to manage this so my GP and I have worked out a 'plan'. I now start injecting Dalteparin if my INR on my machine drops below 3 (it was 2) and once a month I am doing a venous and home machine test on the same morning to compare the results.

Thanks for sharing your struggle in trying to work through the highs and lows. I haven't necessarily correlated my INR levels with other symptoms, for me it doesn't quite match up ( when fatigued, INR is fine, etc), but I'm going to pay more attention to it.

I have been struggling with a downturn in the fatigue, etc again -- and this time I think the 'mental' part of it is what's irritating me the most. I was doing a 'bootcamp' of sorts a couple times a week for several months..really loved getting into it an working out....then a flare snuck up on me. Decided to stop the bootcamp ( and go for something a tad lower energy) as I think I am pushing too hard during this time...not to mention adding work and family life onto it. I too get frustrated, as i think i "should' be able to do it all...I don't want to accept that i can't.

I'm learning that I just need to be ok with it...treat my downturns as just a point in time and remember if I don't slow down a bit it will last a lot longer. It's just hard!!!!!!!!!!!!!!!!!

Total agreement. Went on holiday two weeks ago and was debating whether to take my coaguchek as I have been stable for a while. Thank goodness I did - got food poisoning and my inr dropped to 2.0 (my ideal inr being 3.5) so I was able to speak to a local GP then my inr clinic to sort out a higher dose. But it took a week to come back to normal again and I felt dreadful - cold, exhausted and thought I had a virus. Now I feel ok again. The nurses at my clinic are great - one I spoke to last was really sympathetic and she got me thinking when she said hiccups like this show me how much I am benefiting from warfarin. All the same, roll on the replacement which doesn't need monitoring.


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