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PubMed This is a summary of 18 peer-reviewed journal articles Updated
Hematology

Building Your Care Team and Preparing for Your Visit

At a Glance

Amyloidosis management requires a multidisciplinary care team including cardiologists, hematologists, and neurologists. Prepare for your first specialist visit by bringing your original lab reports, imaging on CDs, pathology slides, and genetic test results to ensure an accurate treatment plan.

Amyloidosis is a “team sport” disease. Because it can affect so many different parts of your body at once, you need a coordinated group of experts rather than just one doctor working in isolation [1][2]. Preparing for your first visit to a specialized center is the best way to ensure you get an accurate plan and faster access to treatment.

Building Your Care Team

The specialists you need depend largely on which “subtype” of amyloidosis you have, but a multidisciplinary center usually includes several of the following [1][2]:

  • Hematologist/Oncologist: The lead for AL amyloidosis. They manage the bone marrow and the “plasma cell” treatments [3].
  • Cardiologist: Essential for both AL and ATTR. They monitor heart thickness and function using biomarkers and specialized imaging [4][5].
  • Neurologist: Critical if you have nerve symptoms like numbness, burning, or weakness (common in ATTRv and some AL cases) [6].
  • Nephrologist: Involved if the amyloid is affecting your kidney function or causing protein to leak into your urine [7].
  • Genetic Counselor: A “must-have” for patients with hereditary (ATTRv) amyloidosis. They help you understand the genetic results and assist with cascade testing—the process of testing siblings or children [8][9].
  • Specialized Nurse Navigator: Often the “glue” of the team, helping you coordinate appointments across different departments [2].

Your First Visit Checklist

When you visit an amyloidosis center, the experts will want to review your original data. Do not rely on “the computer” to have everything; bring physical or digital copies of these essential records [10][11]:

  1. Lab Reports: Specifically look for Serum Free Light Chain (sFLC) results, NT-proBNP, and Troponins [10][12].
  2. Pathology Reports: If you had a biopsy (fat pad, heart, kidney, or bone marrow), bring the full written report. If possible, ask your original hospital for the glass slides or “tissue blocks” to be sent for a second opinion review [13][14].
  3. Imaging on CD: Bring the actual images (not just the typed report) for your Cardiac MRI, Echocardiogram, and any Bone Scintigraphy (PYP/DPD) scans [5][15].
  4. Genetic Test Results: If you have already had TTR gene sequencing, bring the full lab report [16].

Vetting Your Specialists

Since amyloidosis is rare, it is okay—and encouraged—to ask your doctor about their specific experience. A true specialist will welcome these questions.

  • “How many patients with my specific subtype do you see?” You want a team that treats dozens, not just one or two, per year [2].
  • “Do you use Mass Spectrometry for subtyping?” This shows they use the most advanced diagnostic tools available [17].
  • “How do you coordinate with my other doctors?” In a high-quality center, the hematologist and cardiologist should be in regular communication about your case [1][18].

By arriving prepared and asking the right questions, you shift from being a passive patient to an active partner in your care [2].

Common questions in this guide

Which doctors should be on my amyloidosis care team?
Your care team will depend on your specific subtype but typically includes a hematologist or oncologist, cardiologist, neurologist, nephrologist, and a genetic counselor. A specialized nurse navigator is also commonly involved to help coordinate your appointments.
What medical records should I bring to my first amyloidosis appointment?
You should bring physical or digital copies of your lab reports, the full written pathology reports from any biopsies, actual imaging files on a CD, and any genetic test results. Having the original data helps the specialized center give you an accurate second opinion.
Why do I need a genetic counselor for amyloidosis?
A genetic counselor is essential if you have the hereditary form of the disease, known as ATTRv amyloidosis. They help you understand your genetic test results and assist with the process of testing your siblings or children.
What questions should I ask a new amyloidosis specialist?
You should ask how many patients with your specific subtype they treat each year to ensure they have adequate experience. It is also important to ask if they have a multidisciplinary program and whether they coordinate closely with your other doctors.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.How many patients with my specific subtype (AL, ATTRwt, or ATTRv) do you treat each year?
  2. 2.Does this center have a formal multidisciplinary 'Amyloidosis Program' where my specialists meet to discuss my case?
  3. 3.If I have the hereditary form (ATTRv), can you refer me to a genetic counselor to discuss testing for my family members?
  4. 4.Do you have a dedicated nurse navigator or social worker who helps patients manage the logistics of rare disease care?
  5. 5.Is your center involved in any current clinical trials for my specific subtype of amyloidosis?

Questions For You

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References

References (18)
  1. 1

    Untangling Amyloidosis: Recent Advances in Cardiac Amyloidosis.

    Kim D, Choi JO, Kim K, et al.

    International journal of heart failure 2020; (2(4)):231-239 doi:10.36628/ijhf.2020.0016.

    PMID: 36262171
  2. 2

    Transthyretin amyloidosis: Testing strategies and model for center of excellence support.

    Nakov R, Sarafov S, Gospodinova M, et al.

    Clinica chimica acta; international journal of clinical chemistry 2020; (509()):228-234 doi:10.1016/j.cca.2020.06.029.

    PMID: 32564944
  3. 3

    Amyloidosis of the Heart and Kidney.

    Adrogue HE

    Methodist DeBakey cardiovascular journal 2022; (18(4)):27-33 doi:10.14797/mdcvj.1150.

    PMID: 36132587
  4. 4

    Advances and challenges in echocardiographic diagnosis and management of cardiac amyloidosis.

    Tian Y, Liu H

    The international journal of cardiovascular imaging 2025; (41(6)):1021-1037 doi:10.1007/s10554-025-03362-5.

    PMID: 40009119
  5. 5

    Amyloidosis: Multisystem Spectrum of Disease with Pathologic Correlation.

    Sugi MD, Kawashima A, Salomao MA, et al.

    Radiographics : a review publication of the Radiological Society of North America, Inc 2021; (41(5)):1454-1474 doi:10.1148/rg.2021210006.

    PMID: 34357805
  6. 6

    Neuromuscular Complications of Systemic Amyloidosis.

    Namiranian D, Geisler S

    The American journal of medicine 2022; (135 Suppl 1()):S13-S19 doi:10.1016/j.amjmed.2022.01.006.

    PMID: 35104443
  7. 7

    Cardiac Care of Patients with Cardiac Amyloidosis.

    Itzhaki Ben Zadok O, Kornowski R

    Acta haematologica 2020; (143(4)):343-351 doi:10.1159/000506919.

    PMID: 32408301
  8. 8

    Detailed clinical, physiological and pathological phenotyping can impact access to disease-modifying treatments in ATTR carriers.

    Beauvais D, Labeyrie C, Cauquil C, et al.

    Journal of neurology, neurosurgery, and psychiatry 2024; (95(6)):489-499 doi:10.1136/jnnp-2023-332180.

    PMID: 37875336
  9. 9

    Longitudinal analysis of serum neurofilament light chain levels as marker for neuronal damage in hereditary transthyretin amyloidosis.

    Berends M, Brunger AF, Bijzet J, et al.

    Amyloid : the international journal of experimental and clinical investigation : the official journal of the International Society of Amyloidosis 2024; (31(2)):132-141 doi:10.1080/13506129.2024.2327342.

    PMID: 38477065
  10. 10

    Evaluation of laboratory diagnostic tests for light-chain clonality and bone marrow findings in AL amyloidosis.

    Lee T, Park CJ, Kim M, et al.

    Blood research 2023; (58(1)):71-76 doi:10.5045/br.2023.2022232.

    PMID: 36987618
  11. 11

    Use of biomarkers to diagnose and manage cardiac amyloidosis.

    Castiglione V, Franzini M, Aimo A, et al.

    European journal of heart failure 2021; (23(2)):217-230 doi:10.1002/ejhf.2113.

    PMID: 33527656
  12. 12

    Rationale, application and clinical qualification for NT-proBNP as a surrogate end point in pivotal clinical trials in patients with AL amyloidosis.

    Merlini G, Lousada I, Ando Y, et al.

    Leukemia 2016; (30(10)):1979-1986 doi:10.1038/leu.2016.191.

    PMID: 27416985
  13. 13

    A comprehensive panel of testing for amyloidosis.

    Tang H, Zhao F, Zhu Y, et al.

    Journal of histotechnology 2025; (48(4)):191-199 doi:10.1080/01478885.2025.2553926.

    PMID: 40927889
  14. 14

    New developments in diagnosis, risk assessment and management in systemic amyloidosis.

    Vaxman I, Dispenzieri A, Muchtar E, Gertz M

    Blood reviews 2020; (40()):100636 doi:10.1016/j.blre.2019.100636.

    PMID: 31706583
  15. 15

    Utility and pitfalls of the electrocardiogram in the evaluation of cardiac amyloidosis.

    Ng PLF, Lim YC, Evangelista LKM, et al.

    Annals of noninvasive electrocardiology : the official journal of the International Society for Holter and Noninvasive Electrocardiology, Inc 2022; (27(4)):e12967 doi:10.1111/anec.12967.

    PMID: 35567784
  16. 16

    Hereditary transthyretin-related amyloidosis is frequent in polyneuropathy and cardiomyopathy of no obvious aetiology.

    Skrahina V, Grittner U, Beetz C, et al.

    Annals of medicine 2021; (53(1)):1787-1796 doi:10.1080/07853890.2021.1988696.

    PMID: 34658264
  17. 17

    Kidney Amyloidosis: Updates on Pathogenesis and Therapeutic Frontiers.

    Cervantes CE, Atta MG

    American journal of nephrology 2026; (57(2)):249-260 doi:10.1159/000539596.

    PMID: 38865984
  18. 18

    Supportive Care for Patients with Systemic Light Chain Amyloidosis.

    Wong SW, Fogaren T

    Hematology/oncology clinics of North America 2020; (34(6)):1177-1191 doi:10.1016/j.hoc.2020.08.007.

    PMID: 33099432

This page provides educational guidance on preparing for an amyloidosis specialist visit. It is not a substitute for professional medical advice, diagnosis, or treatment from your healthcare team.

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