Cure HHT does not provide medical advice, nor does the printing of these answers constitute medical advice. For professional advice consult your medical caregiver.
Dr. James Gossage, Director of Augusta HHT Center: The general belief by HHT experts is that estrogens help some patients, maybe 30%, especially at higher doses. The risks need to be weighed against the benefits on an individual basis.
Typically, filters are not used with iron infusions. The concern is the filter may filter out some of the iron and prevent it from being infused. Ideally, iron infusions are done slowly in an infusion center with a trained infusion nurse monitoring the patient closely and using an IV pump with a built in air detector alarm, so the risk of having a large amount of air accidentally infused is extremely small.
Dr. Jason Hamilton, Director of Plastic and Reconstructive Surgery at Osborne Head and Neck Institute: It's possible to develop a septal perforation, which occurs when cartilage separating the two nostrils (known as the septum) develops a hole or fissure. This can cause a variety of symptoms, most notably nose bleeding. In HHT patients, septal perforation is usually attributed to nasal trauma from aggressive laser or electric coagulation sometimes used in treating epistaxis.
A septal perforation alters the anatomy of the nose, affecting its function. The normal humidity in the nose is decreased by constant airflow across the weak or torn edges of the perforation, causing the site of the perforation to dry out, leading to a crusted or scabbed area likely to bleed. When left untreated, it causes further deterioration of the condition.
The surgical procedure to repair a septal perforation should be performed soon after a diagnosis, and not as a last resort. The goal is to restore normal nasal anatomy and humidification and to reestablish the structural integrity of the nose – it is not a cure for HHT-related epistaxis.
Dr. Mark Chesnutt, Director of Oregon Health and Science University HHT Center: Many decisions in both life and medicine require that one balances the potential benefits and risks of an action, an intervention or a medication. This is true when one considers the use of blood thinners, especially for a person with HHT.
Blood thinners have been shown to significantly reduce the risk of harm and/or death in a number of conditions, including, but not limited to, heart attacks, atrial fibrillation, stroke and blood clots (both deep venous thrombosis and pulmonary embolism). However, in any patient, blood thinners increase the risk of undesired bleeding. The risk of nosebleeds and gastrointestinal bleeding while taking blood thinner may be higher in some people with HHT compared to those without HHT.
Experience from many HHT Centers of Excellence suggests that at least many HHT patients who take a blood thinner are able to do so without a serious complication and, therefore, are able to benefit from their use. At the present time, there is no good way to know who will have a complication from a blood thinner. Based on experience to date, there are no absolute contraindications for the use of a blood thinner in a person with HHT; blood thinners can be used with caution when there is a strong indication and potential benefit for their use.
How might HHT affect other conditions?
Commonly Asked Questions
HHT Diagnosis, Testing, and Screening
Commonly Asked Questions