CLINICAL DIAGNOSTIC CRITERIA FOR HHT
1. NOSEBLEEDS, spontaneous and recurrent.
2. TELANGIECTASES, multiple, at characteristic sites including lips, oral cavity, fingers and nose.
3. INTERNAL LESIONS such as
Gastrointestinal telangiectasia (with or without bleeding)
Pulmonary AVM
Hepatic AVM
Cerebral AVM
Spinal AVM
4. FAMILY HISTORY- a first degree relative with HHT according to these criteria.
The HHT Diagnosis is:
- Definite if 3 criteria are present
- Possible or suspected if 2 criteria are present
- Unlikely if fewer than 2 criteria are present.
I am a HHT patient... Its (almost) impossible to get it, if your family doesn't have it. There are extremely rare cases, of this rather rare disease where that has been the case (we're talking 2 in a million rare). They don't/wont test you unless they think you have it, nose bleeds alone are not enough to decide you have HHT. It sounds like you may have a vein that needs cauterizing, regardless of your HHT status. Most EENT doctors can do this, so could a GP with some gumption. Silver Nitrate on the bleed site will basically burn it closed. It will hurt a bit, but it will also stop the bleeding. Short of cauterizing it, I would suggest ice on the outside of your nose (under your eye, but well above the nostrils) and maybe even pressure from underneath. Yes, I know that sounds odd. Get a paper towel (they work best but a napkin will work if you wish), roll it up, you want it to be about half the diameter of a chap stick or maybe even a bit smaller and at most an 1/2" to 1" long, put it between your upper lip and your front teeth, it changes the blood pressure in your nose and helps stop the bleeding. Keep it there till the bleeding stops, it helps a lot...
Hello,
I am now researching on that HHT. I will study it. I don't know of anybody in my family who has nose bleeds like I do.
I saw the tests to be performed. WOW.
I will read some more.
Thanks for the information. I appreciate this very much.
Hi...Just wanted to say about the nose bleeding thing. It sounds like it bleeds pretty profusley. Most of my family has a genetic disease called Osler Weber Rendu. I think that's how it's spelled. Anyway, I had an unce whose nose bled like crazy, he'd hold a cup under his nose & it would fill. Out of my grandmas 6 kids, 4 of them were diagnosed, so were a lot of their kids who were tested, and my sister. It affects different places for different people. It's passed from parent to child only. Not everyone has symptoms. My mom never did, but my sister does.You should research it. My sister had problems for years until in a random conversation with an aunt we found out what was wrong with everyone! IThe abbreviation for it is HHT.
Hello,
Have noted those down.
Yes, my lower legs and feet do get all swollen up (there is a numb kind of feeling on the skin but painful deep inside) when I sit too long. I used to workout a lot; and I got very busy on the computer that I do not have the time to workout lately. Maybe, I should try to squeeze in back my workouts into my hectic online work to get my blood flowing better.
I will do as you advised with what to ask my family doctor and what to request for.
Thank you very much.
May be you need to go to a cardiovascular doctor, but first go to the family doctor for him to evaluate that. Try to put a book under your matress, about 10 cm high to elevate your legs a little when you sleep. That can be Phlebitis, but ......doctor must see that. Ask for your cholesterol (LDH and HDL) and tryglicerides too.
So sorry you are having to deal with this.
Just a thought, but you might want to stay out of the pool till the bleeding has been controlled.
It is really a health hazard for yourself as well as others.
Thanks a lot.
I will do just that.
Just an added information also: I have a soft lump on my left foot (looks more like an inflamed vein because it is not hard -- nothing hard under it) about an inch big that when pressed, it is painful. When fastening the velcro of my shoes, my left foot is higher or fatter on that lump. I can remove my right foot easily from my shoe, but not my left foot.
I will get an appointment with my family doctor at my most convenient time.
Thanks for the information.
Ask the family doctor. When you have the results he/she will know if you need a specialist (ENDO). Don't forget to ask free T3, free T4 and TSH (for thyroid), and ask for anti-Tg and TPO (thyroid antibodies), full bood count with ESR, Platelet Count and ask for CRP (C-reactive protein). He will know what is right for you .
Thanks.
Is it the family doctor who will wirte the blood test and ultrasound to be done? Or is it another type of doctor that the family doctor will have to refer me to who will give me a piece of paper to bring to the laboratory and a piece of paper to bring to the ultrasound center of the hsopital?
Yes a thyroid ultrasound. It is a normal blood test the doctor write down the analyses he thinks it is right (those must include the TSH, free T3 and free T4 which measures hoe your thyroid is working). For sure is less blood then you're loosing from your nose. Do that , go to a doctor. Thyroid is an internal organ, an ultrasound of you neck will say if what you have is thyroid related or something else.
Hello,
Thanks for the response.
The physical observation of my body (blood analyses with complete blood count, TSH, free T3 and free T4) you were saying ... are those through drawing blood from my arm alone? If so, how much blood will they draw out of me?
Never thought we could have our necks go through ultrasound. Thought ultrasound was for pregnancies and internal organs only.
Hi
I going to give my personal opinion , Go to the doctor, you need to make a ultrasound of your neck, and a physical observation of all your body (blood analyses with a complete blood count, TSH, free T3 and free T4). It isn't normal to bleed the way you're beeding, someone must look at your nose. Could be just a problem with a vein (or a vein pressure) but you need to check your neck.
Your armpit's curvature with a little hill , you must see that, because can be a lymph node, you may have an infection or something else.
Oh, by the way also, sometimes, I feel something pulling my tongue backwards on the left back end of my tongue.
Thanks for responding.
I had been researching about the nose bleed. So far, I just found out that it is nothing to be alarmed about. ... well, I think.
But one thing for sure is that since I had that big lump on my neck [that today, I just noticed that the left side of my neck is a little bit wider than the right side of my neck. I think my left neck is a bit swollen. Only I, I guess, can notice that], is that my nose bleed became really more often than usual.
It used to be only on winter time when the heater is on in the house. My cousin said we should have a humidifier, which we do not have. Now, starting last year, the nose bleed is really every day. I can't count how many times a day. As I had said in my first post, it has a cycle. Once the blood dries up, the dried blood accumulates inside my left nostril. Eventually, the dried blood tickles my nose and I sneeze and sneeze and SNEEEZE! So, I have to wash the dried blood off that left nostril. And blood again comes out. ... and so on and so forth.
It's kind of scary because the sink will be full of blood or when I'm in the shower, the shower floor and walls has splatters of blood. I usually shower without my lenses on (contact lens or glasses). But when I visit the shower cubicle with my lenses on, I see blood on the walls that I have to scrub off. Yesterday, my toddler and I went to YMCA to swim. When I got in the pool, I felt my nose dripping. ... blood dripped to the water surface! I dropped my entire head and body underwater immediately to avoid embarrassment.
Oh, by the way, I have also noticed other observations on my left side of my body. Like my armpit's curvature has a little hill on it. I looked at my right armpit and it has the normal shape. I pressed on the little hill and I don't feel any lump under it. And the hill is becoming bigger, too. My left armpit is not arched reversely (downward) like my right armpit.
And when I am in a sitting position for a long period of time, my left foot is entirely swollen up until my calves that I don't see my ankle bones any more.
No, I don't have high blood pressure. I check it sometimes. My normal BP is 110/70 or lower. If it goes higher, I would feel it over the back of my neck and back of my head. No, I had not feeling this lately.
The nose bleed does not have a time when it comes. It just follows the cycle I just mentioned. Sometimes, a headache tells me my nose bleed is coming. And I can taste my blood on my tongue and throat and I spit it out. Yes, I spit blood. But I think it's from my nose.
I am just guessing the thyroid nodule is pressing on a vein or something. Sometimes, on an odd position, the lump TOTALLY blocks my airways!.. And all I have to do is move to another position.
When my toddler presses on my lump, I choke like 'dying-choke'.
I think you nead to go to the doctor, and take paracetamol instead of aspirin (not good if you have nose bleeding). Do you know your blood pressure??? is it high?? see that, do you have nose bleeding when you have headaches??? if it isn't your blood pressure so your nose bleeding can be a problem with a little vein in your nose. Don't know the relatioship with thyroid.