Sticky Blood-Hughes Syndrome Support

In Hospital at mo pleased that a opthalmologist and a doctor seem to support the theory of micro clots!

Hi Guys,

since last blog i am currently on day release ;-) from hospital, I got admitted thursday via gp referral, i asked the receptionist at my surgery if the optician had written to the practice re what he thought might be causing my eye pain. She said why dont you see the locum doctor she has just had a cancellation so i did. After her trying to check behind my eyes and taking my APS history seriously - phew! (shame she's not a partner there) - she said i was to go to the assessment ward.

I went in at 12 mid-day to the medical Ward. I had a thorough examination by the medical staff and several hours later saw a consultant. Had CT angio at 2000hrs which was reported as having artefact & needed the opinion of the neuro radiologist who needed to compare it with previous scans i had back in 1990. So i was admitted with a view of further investigations, warfarin omitted just in case lumbar puncture needed.

CTA showed no clots but the team including the consultant couldnt see behind my discs in my eyes clearly esp the left one. Hubby called into boots got verbal message optician thought i had possible branch occlusion. So no LP needed but the team manage to organise late appointment to see opthalmologist in the A&E dept in another hospital hubby drove me so this is now friday 5.30pm.

After thorough check of my eyes i was pleased to find out no evidence of new clots & discs fine. The opthamologist was impressed by the opticians findings and in deed i had a branch occlusion but it was not recent. My headache/pain in left eye was now only a dull feeling the worst of the pain, nausea, poor concentration visual disturbance was over 2 weeks ago when my inr was 1.9 following week went to 2.2 & when still present when inr was 2.5 thats when i saw GP. The opthalmologist believed something had happened in previous weeks. She agreed when i mentioned the theory Kay Thackery discusses in her book, re micro clots. I had a similar episode in march when my INR was 1.4 then i was more compromised then as also profoundly fatigue and anxious as difficulty articulating my words but sadly my GP i saw thought 1.4 was adequate anti coagulation & said i was depressed so it wasnt taken seriously by him.

I just assumed i would be discharged sat am as no new clots seen and headache / pain only dull now so i was all packed ready for home. Doctor that reviewed me was not happy to discharge me as nil said in notes about discharge but to discuss with my rheumatologist on tuesday and she also agreed with the theory of micro clots so i dont feel like i have wasted anyones time - just relieved!! My recent ACL antibodies are very high thus this also fits with the theory as had them checked in my 30's when target inr got reduced from 3.5 to 2.5 at my request as i felt well and was worried of having an inr 3.5 (had major menstral probs - mirena and lower inr target then helped) i barely had migraine type headache or problems to the extent i got now with fatigue complicated with dx fibromyalgia in march. This to my mind may expain why i got worse memory problems, foggy brain and so forgetful, i get flustered easily as so scared of forgetting something in work - i certainly cant multi task like i was doing in my 30's when i enjoyed the challenge of stress in the work place.

I wait in anticipation now as to what the consultant makes of it on tuesday - and if indeed she believes the theory of micro clots and hopefully will discuss and get my target inr higher than 2.5 now or consider adding aspirin to see if this helps the cognitive issues i feel are much more noticable.

will blog again soon kathy xxx

10 Replies

Hi Kathy,

What a pain in the arse!! why do we get told all the while that we are depressed? I for one is so sick of it & got discharged from one hospital for refusing anti-depressents! :0 I know the difference from being fed up or being depressed thanks!!!

Anyway off my soap box now!

I do hope you get some real answers & get them to listen to you, I had to ask for them to increase my inr too as I was having TIA like symptoms & get very foggy headed, confused, clumsy, dizzy etc when below 2.7 ish.

Good luck on Tuesday hun, thinking of you.

Sue xx


Hi Kathy,I am currently on holiday and didn't sleep last night as my tummy was playing glad to read that my micro clots theory helped a bit. My thoughts are that you really do need a higher inr as an inr less than2 is virtually useless. I feel that if I were you I'd want my inr at 3 at the least. I know that menstrual bleeding is sometimes worse but it's a small price to pay to be safe from clots. Good luck with it all I hope you are much better soon xx


Btw knowing my book helped a bit has cheered me up no end as I was feeling quite depressed at the lack of sleep lol xxx


Glad things are moving for you and hope you are out of hospital soon and just to secoind the theroy on Kays book which is brilliant by the way!!!


Thanks for your comments: Sue i couldnt agree more the conditions itself is a challenge enough & sadly made more frustrating as often we are not listened too - i just dont understand some of the medical lot dont they ever google things they dont understand?? hmmm,,, like you i refused to continue on prozac after 2 days i wrote to my GP as felt so let down as a service user giving my rationale for not taking prozac a month later he writes back saying he was very disappointed i didnt continue it blah blah blah...

Kay firstly sorry re incorrect spelling of your surname and thank you for replying i hope you too are feeling better, nothing worse than being unwell whilst away from home and sleep deprivation in itself is awful...i totally agree my inr should be higher being out of hospital im walking the dog shopping etc as resting only, wont give me a true picture of how things are... as i expected pain & nausea returned mainly due to using the lap top and this odd numb nerve type pain persist in my temple above eyebrow on the left... once in no pain i always forget how bad it is i guess we all got that mechanism or else none of us would try/have more babies!! and yes your book definately helps as im sure you have helped many people so well done you ;-)

thanks paddy, hoping after Dr's round i will be discharged tomorrow but have written a few concerns down hoping they will continue to investigate why i got this pain etc although dull at times once in work busy using computers and having to concentrate thats when the symptoms will rear again- then it will be harder to get answer at least as an inpatient things get done quicker so fingers crossed for tommorow

good night and god bless you all kathy xxx


thinking of you


Hi Kathy

I hope that all ok, and you get closer to getting sorted hon. Take good care of yourself and don't let them fob you off.

Gentle hugs love jessielou x x x x x x x x x x


Hi Guys,

Home now and very impressed! saw consultant rheumatologist who was very much up to speed and frustrated with the ignorance of GP's etc as you said Kay he wants my inr to be 3 explaining how people with APS can get dvt etc if inr 2.5 for eg and one of his patients takes 20mg!! and your theory all i can say is they used micro clots as a ? on my discharge summary so yes here in bristol they believe in it too :-) i am to alternate 6mg 5mg instead of just 5mg. If fatigue doesnt improve with a higher inr then he suggest adding planquenil but wanted to try higher inr first. I mentioned about my swallowing issues when inr was 1.4 and he said this is indication of clotting going on with back flow of venous flow and also said some peoples face swell!! that is exactly what was happening when i felt so unwell as my friend would comment i can see you dont feel well today your face is swollen! whilst he was there i tried to ask more questions so i asked about capillary and venous correlation he says the equipment has improved greatly so his opinion differed to my rheumy as he was happy for their use... i wish i could see him in future! he said who i see at present is a colleague and friend and also advocates better understanding amongst the medical profession! he reassured me the hospital had already informed him i was admitted and will write so i get reviewed before feb...

i know i cant give names out on here but am happy to email the name of this doctor if anyone is interested.

Thank you all for your kind words and support i am happy to be at home now with hubby and my puppy headache still there but much better.. i have been told to take regular pain killers so will do that rather than wait until the evening.

Love to all

kathy xxx


glad you got a good explanation,

i have had to insist since I learned from you guys that our INRs need to be between 3 and 4 and NOT 2 and 3!

i alternate 12.5 and 15 mg of coumadin, which is apparently enough for the average elephant. but of course we aren't elephants, we're APLS people. :>)

it took years, but i now have a team of drs who understand the need to keep the INR at what is considered high.

i hope you feel better soon!



Thanks ;-) life would be so much easier if we didnt have to fight to get understood!! Am glad you also got a good team - i was surprised when the rheumy said one of his patients needs 20mg warfarin daily and as you are an example also requiring a large dose. take care love kathy xx


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