Tonsillectomy for IgA Nephropathy (Part 1)
Tonsillectomy for IgA Nephropathy (Part 1)
An informed patient's perspective
What’s covered in the full blog series (Parts 1-3) for subscribers
Comprehensive discussion on the use of tonsillectomy as adjunct treatment for IgA Nephropathy, focusing on its widespread adoption in Japan and China, contrasting it with very rare or infrequent application in Western countries.
Personal experiences and insights through two decades of clinical remission
Rigorous research compilation of the body of knowledge “For” and “Against” tonsillectomy summarized in an easily consumed workbook format with abstracts, methods, conclusions, and proposed mechanisms. Documented are over 3,000 tonsillectomies in persons with IgA Nephropathy across more than 46 research studies
Debates on the effectiveness of tonsillectomy in different ethnic groups, and need for further research, particularly in Caucasian populations
An extension of the main blog series “for patients” and care givers of those with IgAN. It addresses important questions regarding end-stage renal failure, dialysis, kidney transplant, and the safety and availability of tonsillectomy and guidance for navigating discussions with healthcare providers
Concludes with a collaborative call to action and suggests ways the community can contribute to advancing research with a variety crowd-scale citizen science projects
*Podcast* - versions of selected articles - coming soon
This is a “living blog” with iterative updates as we go integrating feedback, new information, additional research, citizen-science project updates, clinical trials, and any necessary corrections.
Tonsillectomy is not typically available as for IgA Nephropathy in the USA, EU and other western countries but is front line therapy in Japan and China
Decades after achieving clinical remission from IgA Nephropathy with a tonsillectomy shortly after diagnosis, I’m confronted with the reality that this treatment has not yet gained traction in Western countries, especially among predominantly Caucasian populations. The scarcity of patient-centered research in these regions underscores the urgency and personal significance of this debate for those suffering from the disease.
IgA Nephropathy, affecting an estimated 200,000–350,000 individuals worldwide, is more prevalent in Asia and is a leading form of glomerulonephritis. However, it’s categorized as a rare disease due to inconsistent screening practices across countries, such as the U.S., making accurate prevalence data challenging to obtain. For instance, countries with mandatory military service show higher incidence rates, likely due to systematic screening. Renal biopsy practices also vary, often delayed until the disease progresses significantly. (Francesco Paolo Schena, n.d.)
Let’s delve deeply into this matter below.
Triumph over IgA Nephropathy: 20-years in remission
At 55, I reflect on my journey since 1997 when IgA Nephropathy (IgAN) was a stark reality marked by severe symptoms and a grim 10-year outlook. Faced with the prospect of kidney failure, I turned to the burgeoning internet and discovered promising treatments abroad. My self-advocacy led to a tonsillectomy within a year of diagnosis, inadvertently bypassing steroid treatment and including minor lifestyle modifications and diet. These changes, coupled with vigilant blood pressure management, have kept my disease in check for over two decades. Although in long-term remission, the threat lingers. A triggering event or personal predisposition to acquiring IgAN remains unknown, reminding me of the ongoing absence of a definitive cure.
Click below for an amazing 7-minute video explainer for how IgAN damages the kidneys
The provided explainer video is an excellent resource for those looking to understand IgA Nephropathy. It offers a succinct and accessible overview, ideal for patients and others interested in a quick refresher on the disease’s mechanisms. To facilitate a deeper understanding, I have integrated the video for direct viewing rather than distilling the wide array of detailed research papers and organizational publications. Provided to us by open.osmosis.org’s medical training videos (CCY4.0)
Impact of IgA Nephropathy on longevity
Exploring geroscience, I’ve learned that IgAN’s progressive kidney decline could hasten overall aging, curtailing health, productivity, and lifespan. Research in a Swedish population indicates IgAN patients may face a six-year reduction in life expectancy. (Jarrick S, n.d.) Dr. Richard Glassock highlights in a JSAN editorial the shared narrative of mortality studies: IgAN often leads to excess deaths and shorted life expectancy, typically from end-stage renal disease (ESRD) and cardiac issues. Typically young at diagnosis and free from other serious health issues, IgAN sufferers primarily contend with Chronic Kidney Disease (CKD), ultimately losing their battle in late ESRD. (Glassock, n.d.)
Awareness of kidney health as we age is important to manage carefully. Normal aging sees a decline in renal function; “As people age, renal mass declines by about 10% per decade from aged 30 to 80 years old. The number of functional nephrons also decreases, in association with a reduction of renal cortical thickness by 10% per older decade of age. Renal blood flow decreases by approximately 10% per decade, along with a decline in GFR at a similar rate after age 40.” (Chou, 2021) These insights highlight the importance of proactive measures to maintain kidney health through the years.
Long-term kidney health: tonsillectomy's potential to minimize effects of IgAN induced accelerated kidney aging
Tonsillectomy, undertaken shortly after diagnosis, paired with a healthy lifestyle — exercise, stress management, and a balanced diet yielded surprising benefits for kidney health as I age. Advanced epigenetic testing in 2023, suggests tonsillectomy combined with these efforts have contributed to a result where my kidneys appear to be the “youngest” of my organs by perhaps 3 years when compared to my chronological age. While my IgAN has been technically in remission for two decades I was bracing for the test to report my kidneys were significantly older. I very much expected them to be aging faster than my other organs because urine testing indicates there is some permanent damage to the glomeruli and filtration capability. It is a relief to understand from an epigenetic perspective and regular urine testing my kidneys appear to be declining near to the rate of a normal healthy individual. See the report readouts below.
Through sharing my story, I hope to inspire and inform others about the potential of such an approach for similar health outcomes.
Long-Term stable kidney function after tonsillectomy for IgAN
Above are urine tests over time demonstrating stable and near normal kidney function. The application used is Heads Up Health. They make it possible to upload your long term historical laboratory results from LabCorp, Quest and many other health care providers so that you can aggregate all test results into one dashboard. It enables you and your medical care team to track long-term trends, visualize the entire picture across your medical history. We often lose the longitudinal data as we change providers, insurers, and they change their electronic medical record (EMR) systems over the years.
SideTrack Topic – Biological Age Testing
This Elysium Health epigenetic test, my family history, and other cognitive health analysis suggests my brain may be aging three years faster than the rest of my organ systems. This is not uncommon in males and warrants attention. It could be an early warning sign of neurological disease or potential for early cognitive decline. To understand this discrepancy, I’ll need to dive deeply into the biohacking toolkit. We’ll explore this together. Like most diseases there is much that can be done if caught very early.
I’m testing several advanced biological age testing products. TruDiagnostic offers an excellent product with actionable insights. It is a front runner, utilizing cutting-edge technology and bioinformatics to help assess your individual pace of biological aging overall, your immune system, and specific organ ages. I’m currently developing a comprehensive review for you of various biological age tests and their efficacy - coming soon.
If you are inclined to also gather this purposeful baseline data, please consider using the provided inline affiliate links which should never cost you more than going direct. Doing so benefits you and this blog.
Two key scenarios for considering tonsillectomy in IgA Nephropathy care in Western populations
As we proceed I want to be sure we keep two scenarios top of mind. In my opinion, based on decades of research papers suggesting efficacy in these exact use cases – tonsillectomy minimally warrants deep discussion among well-informed medical professionals and with selected patients for these two key scenarios.
Individuals with IgA Nephropathy of Asian descent living among predominantly caucasian populations where they do not offer tonsillectomy for IgA Nephropathy
Those afflicted with IgAN and also experiencing frequent chronic tonsillitis
Tonsillectomy as a supplemental treatment for IgA Nephropathy: a global perspective
While tonsillectomy is a common adjunct therapy for IgA Nephropathy in Japan and China, it’s not widely recognized in other parts of the world. This blog sheds light on the potential benefits, presenting research on clinical remissions and improved outcomes after tonsillectomy in combination with and without the common IgAN therapies of the time.
Despite evidence of tonsillectomy’s effectiveness in Japan and China, its adoption in Western countries with Caucasian populations remains limited. This disparity raises questions about the global research landscape and its implications for treatment availability.
While some substantial research papers outside Asia in Hungary, and Egypt, and anecdotal case reports in the USA suggest potential efficacy in Western populations, broader documentation and dissemination of these findings are necessary.
This platform seeks to initiate a more extensive collection and discussion of such international studies to understand the varied applications of tonsillectomy in treating IgA Nephropathy across different ethnicities.
As an interactive platform, this blog invites patient and medical provider discussion insights, ensuring the content remains current and reflective of diverse clinical experiences and outcomes.
Here, readers are empowered with research to form educated opinions, and I am open to updating the information based on community input and scientific advancements as we collaborate and learn together.
Evaluating the global research on tonsillectomy for IgA Nephropathy: deep dive into the research
Below blog provides a link to a research workbook summarizing over 60 studies. The workbook serves as a gateway to the latest knowledge for informed decision-making.
Navigating through dozens of supportive research papers and a handful of dissenting ones, I’ve distilled the findings to aid your quick understanding. With thousands of cases tonsillectomy with IgAN documented, I highlight key remission statistics and study insights, offering a resource for easy access to the body of knowledge on tonsillectomy for IgA Nephropathy.
The research scorecard currently stands at 46+ or more significant research papers, meta-analysis, case studies, and medical journal articles “for” Tonsillectomy (in combination with standard therapies) vs 6 or more “against.” I’ve summarized the freely available information in the abstracts and conclusions to facilitate easy review. Documented are over 3,000 tonsillectomies in persons with IgA Nephropathy in freely available research papers. Where possible I include – remission rates, curated study methods, conclusions, and mechanistic highlights so you can quickly scan through and selectively immerse into papers that catch your interest.
The endeavor respects the rigorous work behind each study and seeks to unify efforts toward better care for all demographics, acknowledging that the debate within the research community is still active and ongoing.
Acknowledging the rigor and quality of research in Asia and globally, it’s vital to appreciate the collective efforts driving IgA Nephropathy studies. Research requires significant collaboration and meticulous work to yield findings that withstand scientific scrutiny. All participants, from researchers to healthcare providers, contribute valuably toward enhancing patient care. As the debate continues, it’s important to foster cooperative research, especially to ascertain the effectiveness of tonsillectomy in Caucasian populations, a topic still open and undecided within the scientific community. Without the efforts of hundreds of dedicated Asian universities there would not be enough research to even debate efficacy in Caucasians.
6 substantial research papers “for” tonsillectomy in combination with standard therapies (TSP)
A Nationwide Survey on current treatments of IgAN in Japan reported, “Our results show that almost 70% of internal medicine hospitals performed TSP (tonsillectomy plus steroid pulse therapy). Moreover, almost 60% hospitals began TSP in the period between 2004 and 2008, indicating that TSP spread through Japan quickly and has become the major therapeutic approach for IgAN in the last decade.” (Matsuzaki, 2013)
For example, Dr Takahito Moriyama and 11 other clinicians and researchers felt strongly enough to write proposals that were eventually awarded grant funding. A massive amount of time sifting through the records of 1,147 patients with verified IgAN based on renal biopsies performed between 1974 and 2015 at Tokyo Women’s Medical University. (Moriyama T, 2020)
282 had undergone tonsillectomy at any point and 192 within one year of diagnosis. You can click into it (here) and find Figure 3. It depicts survival rates of those with tonsillectomy at any time in their life (black line) and those without (gray line). They are sorted into 4 categories of severity based on eGFR and U-Prot. Chart A depicts – 94% survival with tonsillectomy over 20 years vs 62% without, Chart B 99% vs 87%, Chart C 88% vs 33%, Chart D 100% vs 69%.
Chart C is the most dramatic. These subjects had the most severe symptoms (lower eGFR and higher proteinuria) and the worst long term survival prognosis. The research reports 88% survival rate with tonsillectomy T(+) over the following 20 years vs 33% survival rate in those without tonsillectomy T(-). The gap between a line extended across the top (1.0 = 100%) and the black or gray lines that step downward are those subjects that progressed to kidney failure dialysis or worse. 67% of those without tonsillectomy progressed to the end stage.
That is the most favorable presentation of the tonsillectomy data and suggestive that having the procedure near to the time of the biopsy is most effective. After propensity score matching the gap is significantly narrowed in Fig 4 and 5.
Dr Moriyama’s et al, conclude in their cohort of Japanese patients:
“Our 20-year renal survival analysis indicated that tonsillectomy at any time, >1 year after renal biopsy, and as an initial treatment was associated with a lower increase in Cr level and less progression to ESKD. Our study also indicated that tonsillectomy at any time was efficacious for patients with IgAN who had U-Prot ≥1.0 g/d, regardless of eGFR, and that it was beneficial as an initial treatment for patients with IgAN and a U-Prot ≥1.0 g/d and eGFR <60 ml/min per 1.73 m2. Furthermore, the findings of this study showed that tonsillectomy and oral steroid therapy with or without steroid pulse therapy were associated with less progression to ESKD”. (Moriyama T, 2020)
The results astound, if somehow this was an inflight, multi-decade, controlled, and blinded clinical trial - would they have to stop the study early and provide the control group opportunity to have tonsillectomies performed?
Below is other important research I want to be sure to highlight:
In 2022, Yan Li et al. looked back through records of 452 patients with IgAN, found 226 had received tonsillectomies, then propensity score matched 226 controls who had never undergone the procedure to look at % clinical remissions vs progression to end stage renal disease. 125 achieved hematuria remission, 138 had proteinuria remission, and 98 had clinical remission. They concluded, “Tonsillectomy had a favorable effect on clinical remission and delayed renal deterioration in IgAN. In addition to patients with early stage IgAN, it may also be beneficial to IgAN patients with higher levels of proteinuria and relatively severe pathological damage.” (Li, 2022) This is an open access article; you can review the entire study (here).
In 2016, Dany Yang et al. conducted a “gold standard” controlled study where they were funded and approved by their medical board to conduct a net-new experiment on patient subjects over 4 years. They randomly selected 98 patients with biopsy-proven IgA nephropathy and randomly allocated them to receive tonsillectomy combined with drug therapy (Group A) or drug therapy alone (Group B). The remission rate of hematuria was 91.8% (45/49) in Group A and 46.9% (23/49) in Group B. As shown in Figure 1(A), the adjusted cumulative remission rate was higher among patients in Group A compared to those in Group B (log-rank test, p < 0.001). The median time to reach first remission for Group A and Group B was calculated to be 3.10 (0.29) and 24.90 (10.07) months, respectively. (Yang, 2016) This is an open access article, you can review the entire study (here).
In Keita Hirano’s et al. acclaimed 2019 study, 252 biopsy proven tonsillectomy patients were further subdivided into 153 matched pairs, those who underwent the procedure and did not. In matching analysis, tonsillectomy was associated with primary outcome reduction (hazard ratio, 0.34; 95% CI, 0.13-0.77; P = .009). Those undergoing tonsillectomy required fewer additional therapies 1 year following renal biopsy (adjusted hazard ratio, 0.37; 95% CI, 0.20-0.63; P < .001) without increased risks for adverse events, except transient tonsillectomy-related complications. (Hirano, 2019) This is an open access article; you can review the entire study (here).
In 2015, Lin-lin Liu et al. conducted a massive Meta-Analysis for clinical remission outcomes across 14 studies and 1,794 patients. There were significantly greater odds of clinical remission with tonsillectomy (10 studies, 1,431 patients; pooled OR, 3.40; 95% CI, 2.58-4.48; P<0.001). Sensitivity analysis to exclude the effects of renin-angiotensin system inhibitors yielded consistent results (6 studies, 671 patients; pooled OR for remission, 2.80; 95% CI, 1.91-4.09; P<0.001). In subgroup analysis of the remission outcome, tonsillectomy plus steroid pulse therapy was superior to steroid pulse therapy alone (7 studies, 783 patients; pooled OR, 3.15; 95% CI, 1.99-5.01; P<0.001), and tonsillectomy plus conventional steroid therapy was superior to conventional steroid therapy alone (2 studies, 159 patients; pooled OR, 4.13; 95% CI, 1.23-13.94; P=0.02). Tonsillectomy was superior to general treatment (3 studies, 187 patients; pooled OR for remission, 2.21; 95% CI, 1.20-4.05; P=0.01). In addition, tonsillectomy was associated with decreased odds of ESRD (9 studies, 873 patients; pooled OR, 0.25; 95% CI, 0.12-0.52; P<0.001). Conclusions: As adjunct or independent therapy, tonsillectomy may induce clinical remission and reduce the rates of ESRD in patients with IgAN. (Liu, 2015) (here).
In 2020, Hirokazu Marumoto et al. answers the question of if Tonsillectomy many years after diagnosis is effective as monotherapy in the absence of simultaneous use of corticosteroids. Mean time to tonsillectomy from termination of corticosteroid therapy was 84 months with mean follow-up of 130 months. Hematuria, proteinuria, and clinical remission were achieved in 13 of 17 (76%), 10 of 17 (59%), and 8 of 20 (40%) patients at medians of 3.0, 6.0, and 13.5 months, respectively, after tonsillectomy. The slope of the estimated glomerular filtration rate (eGFR) increased significantly during the 81-month observation period. In the Discussion section he said, “Among 20 patients with IgAN and an incomplete response to conventional therapy, tonsillectomy was associated with improvements in hematuria, proteinuria, and eGFR decline. All patients showed recurrent or persistent hematuria/proteinuria and/or concomitant GFR decline despite receiving conventional therapies for many years.” (Marumoto, 2020) This is an open access article, you can review the entire study (here).
Those are 6 examples of the 40+ research papers I summarized for your quick review that are supportive of Tonsillectomy for IgAN. There are approximately 50 more I can’t get to reviewing at this point but have provided for you. I will happily append the workbook with additional research (both pro and con) if provided and summarized usefully.
Continue to Tonsillectomy for IgA Nephropathy (Part 2) for discussion of:
Efficacy of Tonsillectomy for IgA Nephropathy in caucasian populations
Combining Tonsillectomy and Steroid Pulse Therapy
Mechanisms behind Tonsillectomy's potential effectiveness in IgA Nephropathy
4 substantial research papers “against” Tonsillectomy
Reasons why Tonsillectomy may lack efficacy in different ethnicities
Desperate need for more research in Western caucasian populations
Six patient use cases warranting discussion between patients and nephrologists with clinical experience with tonsillectomy with IgAN
A call to action: mobilizing the community for IgA Nephropathy research
A link to an extension of the main blog series “for patients” and care givers of those with IgAN. It addresses important questions regarding end-stage renal failure, dialysis, kidney transplant, the safety and availability of tonsillectomy and guidance for navigating discussions with healthcare providers
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Bibliography
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Let’s get the conversation started, be sure to review parts 1 & 2 and for patients part 3. What is on your mind? I’m hoping to have a combination of patients, nephrologists, and researchers sharing their stories and insights to help us understand the landscape “for TSP” and “against TSP.” If you are ready to get deeply involved jump into the community forum where the most engaged are working to solve this together.