Hi,
After about 30+ years of having HHT, I now finally know that the cause of all my problems are mostly in my GI tract. My GP referred me to the Gastroenterologist in April because of my severe aneamia problem. He said I was bleeding internally and booked an Endoscopy and Colonoscopy. They "zapped" some large teliagentsia (probably spelt that wrong!) in my stomach and found nothing in my large bowel.
I then had a capsule endocopy - Swallowed a camera capsule and was strapped up with the monitor to read it for 6 hours. It was then passed in the normal way! This was done in August, at great cost - £600 - to the NHS and I have just had the results. Apparently, I have "t's" in my duodenum and lower small bowel. These bleed on a regular basis - although I see no evidence of blood, except occasional severe constipation. However, it is enough to keep my blood count down to an average of 8.5 and no stores. This is the most debilitating and problematical side of my HHT. I am 54 and it seems to have got worse since menopause, but the 2002 article posted suggests that HRT could have helped. My mother died of breast cancer at 51, so that was out of the equation for me.
I am about to discuss with the consultant whether small bowel "t's" are left alone or "zapped" and also, hopefully, if he can get my blood count up to a respectable level by intravenous methods. They are very against giving me a blood transfusion - not really sure why.
I do get nosebleeds, but manage to clot them quite quickly, by holding them to a clot, blowing the clot down and then holding until it stops - usually about 3/4 goes. But I can go weeks without a nosebleed. I definitely cannot take any ISIADs though - iboprofen.
Anyone else suffered as I am - and any further comments!!!!
n.b. I know that my father had HHT - he suffered nosebleeds but also aneamia - probably some GI tract problems. He didnt look after himself by taking iron to counteract and died of a massive heart attack, when he contracted pneumonia at the age of 69.
Carol
