Sticky Blood-Hughes Syndrome Support

Can thin blood make day to day life feel hard work??

Firstly i would like to thank u all for the brilliant advise u all gave me when i asked about my inr target being to recap...I have a target of 3 and have been suffering with horribe migraines and bad heads. After targeting it to b around 4/4.5 i have felt amazing!!! Thank u for this!!!!!!

Anyway this wk its shot up to around 5.7 and i feel very tierd and have brain ache. Life just feels hard this wk and i was wondering if my inr being up that high has effected it?? I self test so i can monitor it day by day if needed and i have taken a smaller amount tonight so i think it will fall again.

Any advise on this would b very much appreciated!! I am feeling low with it all again as the last 3 weeks have been amazing and i think i forgot has yucky i can feel.

Many thanks 😊

8 Replies


Do you know as you selftest, how much difference it is between the fingerprick test with the machine and the vein-tests at the lab? Also how often do you test at home as an INR of 5.7 is a bit high. If I should have an INR of 5.7 I should perhaps have an INR in the vein (the number that counts) of 4.4. When I have a high number on the machine the difference between the two readings is bigger.

Are you Lupus Anticoagulant? Usual with readings going up and down and a big difference.

When you reach that number how high is the INR in reality (= in the vein at the lab)?

You say you have taken a smaller amount tonight. How much Warfarin have your reduced, hope you did not take too much as the INR will drop. When I have a little high INR I always eat more green vegs the same day and take a test with the machine perhaps one or two days later. Make note I also do, not to forget, otherwise you will forget what you did or did not.

So your Specialist raised your target from 3.0 in INR to 4.0 - 4.5. A big change!

When I have a little high INR I usually feel a bit dizzy. We are different people though.

Best wishes from Kerstin in Stockholm


As to your real question; I do not think a high INR would make you feel tired and have very difficult to work. As I said I feel a bit dizzy.

Could be a virus or something. See to it that you do not go too high in INR because that is not good. See a Doctor if you feel very bad.



Hi Lure

Remember my post from few days ago. I just saw a Rhuemiotologist and she ordered few blood works. I've mentioned the sticky blood as well so she orderd theses tests.

Urinalysis with culture and reflexive urine culture were normal.

Lupus 12 panel, Antiphosphoipid antibody panel,

Lupus Anticoagulant W Reflex, and ANCA Screen with Reflex to Titer were all in range.

So I don't know what will be the next test to do. I just know that I'm not lying and I truly have the symptoms.

So are those shows if I have blood clotting isues? Did she really checked on everything?

If some one has the syndrome of the blood clotting will it always shows up in the lab tests?

Should I ask for more blood works?

Thank you Lure🙏


Hi Mel, I can not remember your post as you have not put your own post on here yet I think.

I do not understand your bloodtests you have done and hope it is a Doctor who understands Hughes Syndrome very well!

Kerstin in Stockholm


I would 'feel' different if my INR went high, but it could have done that for a number of reasons - diet, a cold, some form of gastrointestinal issue.

I'm sorry, I haven't read your history, but why do they have you on warfarin?

As Kerstin (Lure) says self test results differ from vein results and you need to know that difference. It sounds like they've set you free in the wild without giving you all the information!


Be very careful as being to high may cause a brain bleed you should call your doctor for directives.


Hi gemgemz,

I have read that we talked about your INR last time you wrote here.

Have you now looked for the difference between the two different readings that may occur with our illness? That is very important and as you have a Specialist as I understand he have raised your INR from 3.0 till 4.0/4.5 A huge difference for a Doctor to suddenly do. Was it a misunderstanding from me?

You also test every second day and that is of course very good as then you can control that your INR is not too high as I am afraid it is. If you want to reduce the INR a little you can eat some brusselsprouts and it will go down in one day probably, much faster than changing the Warfarin. It is important as I said to make notes every day what you do and what you eat and the drugs you take etc etc. Also Alcohol effects the INR. CONSTANCY is the key.

Please tell me how you feel today.



Interesting you didn’t respond


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