Hi,
I was diagnosed with HHT in the early 80's because my GP at the time saw the red spots on my tongue and bottom lip. I had a very large spot on my lip for many years, which bled when I my aneamia was very low (below 8.0 heamoglobin). I had great trouble stopping this bleeding. Pressure was the only way. Then lots of vaseline or similar to heal it. This particularly troublesome spot has now all but disappeared for no apparent reason. The smaller spots on my lips do not ever bleed. But the spot I had on my tongue was very troublesome. When it bled I again had to apply pressure (a very funny looking face as I had to double over my tongue) It would last for up to 20 minutes. Again it just disappeared after being there for years.
I have loads of red spots on my chest (they arrived in the last few years). They never bleed. When I was a little girl I had a large red spot on my finger for years. It bled for ages and then disappeared. I have never had any further spots on my hands. I have then up my arms and on my legs and stomach. Not on my back. However I do have a lot up my nose and suffer nosebleeds, but not as bad as some on this site. I also have many in my gasto tract which have been treated in the last year. They are in my stomach, upper duodenum and lower illium. I have been zapped in my stomach and duodenum, but it is a big deal for the lower illium and I have so far refused. When I had the gastroscopies, the spots in nose altered. The usual culprit that bled spontaneously from just inside my lower sinus no longer bleeds. But I have one that bleeds badly in my uppper sinus just above my nose to the left of my eye. I know where it is because when it decides to bleed, it tingles (like the feeling when you are about to sneeze) Never sneeze through your nose. Only through your mouth - loud but does prevent a nosebleed.! When I went to an ENT specialist last year he was fascinated with my condition but did not do anything except look and advise that I had a lot of red spots in my nose - at least 10 each side and probably a lot through my sinus canal. I do not have any problems with my sinuses, but if I get a cold I do not ever get nosebleeds - because my nose is wet apparently.
I do however suffer my constant aneamia that goes up and down like a yo-yo. I am now under the hospital and go for weekly iron infusions with a gastro nurse. I have been for a year now and although I have a higher ferritin level (blood stores - 24 - 60 instead of 0), my heamoglobin remains very low.
I do have a very active lifestyle - I own a shop which is pretty much 24/7, but had some serious nosebleeds over Christmas lasting about 20 minutes after which I felt very ill.
I have been tested for other blood conditions, but frankly remain a mystery to the medics with regard to the aneamia. They maintain that my constant internal bleeding is the problem, but whenever I am under a lot of stress my blood count plummets, but I do not see evidence of any serious bleeding, either internally or through my nose.
I am under the Norfolk and Norwich hospital and am apparently only 1 of 2 HHT patients. The other one - a male had his gastro spots zapped and is apparently better!!!!! Great, why not me? I am a 55 year old female with two children and my HHT presented in pregnancy with severe aneamia, although I had nosebleeds as a child - some severe over the sink jobs. My father was the carrier and also had HHT with serious nosebleeds and aneamia. He died of a huge heart attack at 69 because he wouldnt take the aneamia seriously and didnt like the side effects of the iron tablets. I was very cross with him at the time!
My personal opinion is that HHT affects the blood cells to cause the aneamia as well as the constant bleeding. After all most women bleed every month and their blood recovers. But they dont seem to have found it in me!!!
Anyone else have the aneamia problems with HHT?
?
Hope this helps explain a bit to some of you. I do seem to be a bit different!
By the way I can only stop my nosebleeds by pinching my nose for a while to build up a clot and then gently blow it down and pinch again until eventually it just stops.
What do you guys do?
Nice to read how others are feeling
Carol
