Sticky Blood-Hughes Syndrome Support

Anaemia still there so haemo wants test for cancer. OMG

I just cannot believe this. I got sent to haemo as I wanted to change from warfarin to fragmin. My GP was scared so sent me to haemo. She said as I was pale must be anaemic. Well she was right I am 10.5 should 12. I said Iwould eat more red meat to try to solve it, so ate liver twice a week but it did not budge. She is panicking about bowel cancer wanting me to have iron infusions and ct scan and internal cameras. I am stunned I have had low iron for years but hate the pills. I still have a monthly cycle but she won't accept that my be the cause. I am so shocked scared I can't believe it. OMG

2 Replies

as hard as it must be - and i cant imagine what your going through( only to say that i had a breast scare and was pretty frightened,) - i think the only way to get through it is to think that they are just covering themselves, i think hughes has so many branches and different symptoms that arent specific to it or any one illness that doctors have to assume the worst llnesses and get them ruled out - its the only way. Ive just had a lmber puncture to rule out ms and if i think about the reality of it i could get really ahead of myself, but aps mimics ms and so they have to rule it out before they can say the symptoms are down to aps because its such a varying syndrome. If we have an auto immune disorder then i think there are so many implications of it more than what we know yet, one example is i lost babies and it was put down to aps damaging the placenta, the last time i got pregnant a different cnsultant said she wanted to try the high dose 5mg folic acid as she didnt think my body was 'processing' the folic acid - nobody else had ever suggested that to me - and hey ho it was the only pregnancy i didnt bleed with, althugh it still had problems - my personal belief is that although aps aused my pregnancies to end, it was also affecting my ability to process vitamins/minerals in the way they should be in order for my body to function correctly - could maybe this be the case with you - or something similar? Maybe the APS is just not letting your body process the iron? I know iron,b12 and folic acid are linked in some way and help each other out i think. One final point is dont eat iron containing foods alongside dairy as it stops the absorbency of it, and eat seeds as the help somehow - good luck hun xxxxxxx


Hi Jade,

Welcome to the group you will find all the support you want here, I am sorry to hear what is happening to you and i really hope it is more on the posative side. My only comment is going through the tests may not be nice but atleast it does clear or may give you an answer.

please do let us know how you get on.



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