# Nutrition in hereditary ATTR amyloidosis
Albumin and nutritional status
Recent studies suggest that the nutritional status of patients with ATTR amyloidosis influences the course of the disease.
ResearchediPositive results in clinical studies, not yet standard treatment
Low blood albumin levels (protein made mainly in the liver) appear to be associated with a less favorable prognosis, especially in patients with cardiac involvement.
This does not mean you need to eat more protein to maintain your albumin levels — it is more complex. Albumin is mainly a measure of overall nutritional status and how well your body can respond to the disease. Someone with ATTR may have normal protein intake but still develop low albumin levels because the disease affects how the body processes protein.
**What this means for you:** Your healthcare provider or a dietitian from the treatment team can check whether your nutrition is adequate. This is not something you handle alone, but part of overall monitoring.
Fluid balance and heart symptoms
Many patients with ATTR amyloidosis experience heart symptoms, particularly a weakened heart that has difficulty pumping. In heart failure, fluid balance plays an important role.
ProveniIncluded in official guidelines, or approved by EMA or FDA
Salt restriction and fluid restriction are part of standard heart failure treatment, including in cardiac amyloidosis. How strict this restriction needs to be varies from person to person and depends on how well the heart functions and what treatments you are receiving.
This is not something you decide yourself — your treatment team will set this based on your heart function, blood pressure readings and symptoms. Some patients need more intensive fluid restriction than others.
Vitamin B12 and peripheral nerves
ATTR amyloidosis often affects peripheral nerves (polyneuropathy), which can disturb sensation and strength in hands and feet. Adequate B12 levels are important for nerve function.
ResearchediPositive results in clinical studies, not yet standard treatment
Attention is paid to monitoring B12 levels in patients with hereditary ATTR, especially because some treatments can indirectly affect nutrient absorption.
Checking your own B12 levels and supplementing where necessary is part of standard care. This is something your healthcare provider monitors.
Nutrition and drug interactions
Patients with ATTR may receive different medications — from heart and blood pressure medications to medicines aimed at stopping TTR protein production. Some nutrients and products can interact with certain medications.
ProveniIncluded in official guidelines, or approved by EMA or FDA
Certain foods (such as grapefruit) and supplements can affect the effectiveness of many medications. This also applies to patients with ATTR.
It is important to always discuss with your healthcare provider or pharmacist which foods or supplements you can safely use alongside your medications.
Digestion and autonomic nerves
In hereditary ATTR, the autonomic nerves (which work automatically without you thinking about it) can be affected. This can affect digestion — some patients experience nausea, early satiety or changes in bowel movements.
ResearchediPositive results in clinical studies, not yet standard treatment
The effects of autonomic nerve damage on digestion and food intake are increasingly recognized as part of ATTR.
If you have digestive problems, adapted nutrition can help — for example, smaller meals, easily digestible food, or liquid nutrition. A dietitian can provide practical help here.
Weight and muscle mass
Because ATTR can lead to muscle weakness and because the disease and some treatments affect how the body uses energy, weight and muscle mass can come under pressure.
ResearchediPositive results in clinical studies, not yet standard treatment
Maintaining muscle mass is considered an important part of overall care, although research into specific nutritional measures for ATTR patients is still ongoing.
Regular monitoring of your weight and muscle strength by your care team helps identify problems early. Adapted nutrition (sufficient protein and energy) and careful movement can help, but you should always discuss this with your care provider or dietitian.
Food safety and esophageal function
Some patients with ATTR develop swallowing difficulties because the nerves that control the esophagus can be affected.
ResearchediPositive results in clinical studies, not yet standard treatment
The impact of ATTR on esophageal motility and swallowing function is increasingly recognized.
If you have difficulty swallowing, it is important to inform your care provider. A speech therapist or dietitian can provide advice on safe eating and drinking — think of adapted textures or the speed at which you eat.
Minerals and electrolytes
Patients with ATTR who take certain medications (especially certain types of heart medication) sometimes need to pay extra attention to their sodium, potassium, and magnesium levels.
ProveniIncluded in official guidelines, or approved by EMA or FDA
Keeping electrolytes in balance is important for heart function and nerve function.
This is not something you dose yourself — your blood values are regularly checked, and based on this your care provider will advise you on nutrition and possibly supplements.
Calorie requirements and energy intake
Patients with ATTR may have increased energy needs because of the disease and the effort your body makes to cope with it. This can lead to unintended weight loss.
ResearchediPositive results in clinical studies, not yet standard treatment
Adequate energy intake is seen as supporting the maintenance of weight and muscle mass.
If you lose weight unintentionally, this is a reason for your care provider to look at your nutrition and nutritional status. A dietitian can help with practical adjustments.
Supplements and herbs
Advised againstiProven ineffective or harmful, or dangerous in combination with your treatment
Taking supplements, herbs, or 'natural' foods on your own without consulting your care provider is not recommended, because many of them can interfere with the effectiveness of your medications or cause side effects.
This is especially true for supplements that affect liver or kidney function, because ATTR and its treatments can already be taxing on these organs.
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**Summary for practice**
The most important thing is that your nutrition and nutritional status are part of your overall treatment for ATTR. This is not something you determine completely yourself — it is part of the regular check-ups with your care team. Nutrition can contribute to your well-being and the maintenance of strength and weight, but only in consultation with your care provider, pharmacist, and possibly dietitian.
_This information never replaces a doctor's judgment. Always discuss your situation with your own healthcare provider._