Medication: The role of Intravenous (IV) Fluids in PoTS

After reviewing current guidelines and taking advice from our medical advisors, PoTS UK is unable to endorse the use of regular IV (intravenous) fluids apart from in the circumstances explained in more detail on this page.

Why fluids are important in PoTS

Patients with PoTS often have a low blood volume. It is therefore important to maintain a high fluid intake to maintain or expand the blood volume. If there are no contraindications, extra salt can help to keep fluids within the blood vessels. 

Circumstances when IV fluids are currently recommended:

Emergency Fluids

People with PoTS are more susceptible to conditions that reduce the blood volume such as dehydration. Gastroenteritis or vomiting in pregnancy (hyperemesis) are examples of situations where PoTS can suddenly deteriorate due to excessive fluid loss or reduced intake.  

When intake by mouth cannot be increased quickly, intravenous fluids (fluids infused directly into a vein) under medical supervision can quickly improve symptoms and wellbeing. 

Operations

When people are asked to fast for surgery, they can quickly become dehydrated. After surgery patients can take some time to start drinking properly again. 

It can be helpful to give IV fluids at an earlier stage prior to surgery to people with PoTS, and to give the fluids afterwards until patients are drinking well. 

Gut problems that limit fluid intake

Sometimes people with illnesses that significantly limit their oral intake need fluids or food to be provided via another route. This may be by tube through nose (nasogastric) or skin directly into stomach (gastrostomy), or through a needle into the skin (subcutaneous) , through a small blood vessel inserted briefly into a vein in the arm or hand (IV), or via a more long term tube into a small vein (PICC) or large central vein (central venous catheter). 

Is there any research investigating regular IV fluids in PoTS?

There have been some very small studies or case reports looking at the impact of giving intravenous therapies in PoTS. Although some improvement in symptoms has been reported, they were not high quality research studies as they did not involve control groups (an arm of the study in which patients receive sham infusions) which would help to determine if any improvements were due to other factors such as placebo (where benefit is psychological). Therefore there is not yet any good research evidence that regular IV fluids are better than drinking more water. There are no good long term studies that properly investigate side effects of long term IV fluids in PoTS, although there are several that show complications of IV infusions in other conditions.

What do guidelines and the experts say?

Long-term (or chronic) saline infusions are Class III recommendations by 2 major professional organisations which include experienced PoTS experts (Heart Rhythm Society and Canadian Cardiovascular Society). Class III means that they should not be given routinely.

Receiving saline repeatedly through arm or hand veins will mean that obtaining access to these peripheral veins will become increasingly difficult as they become damaged with regular use. This can result in problems with access to veins in the emergency situations described above. This could also lead to a temporary or eventually a permanent central line being necessary to provide IV fluids, the dangers of which are described below.

Potential dangers of IV fluids

Dangers depend on method of administration and include:

• Fluid overload/water toxicity 
• Bruising, haematoma, pain, and/or scarring at insertion site 
• Infection or where a needle or tube is inserted 
• Phlebitis (inflammation of blood vessel) 
• Infiltration (where fluid leaks into the skin) 
• Sepsis  
• Thrombosis of blood vessels 
• Accidental arterial access
• Air embolism (air entering vein travels to lung or heart) 
• Death 
• Frequent cannulation of veins can damage them, making it difficult for clinicians to find or access veins to provide IV infusions at a later date.

Call for research

PoTS UK calls for funding for long term randomised controlled studies to investigate the impact and safety of regular IV fluids as treatment for PoTS.

PoTS UK’s position on regular IV fluids.

We are aware that there are some people with PoTS who receive this treatment and report benefits. However, PoTS UK strives to ensure our advice and website content is evidence based for the safety and wellbeing of everyone who accesses it. PoTS UK follows the advice of leading PoTS experts in the UK and abroad.  

We support the use of IV fluids inemergency circumstances such as gastroenteritis or severe vomiting, or before, during and after operations, or when people have severe co-existing illness that limits their oral fluid intake. 

We don’t recommend the use of regular IV fluids where regular and sufficient drinking of fluids is possible.

We call upon new research to clarify the role of this controversial treatment. 

As always, consulting with your own healthcare professional is essential in ensuring you receive the right care for your needs.