Asbestos, asbestosis and sarcoidosis

Hi everyone, about 20 years ago I was diagnosed with pulmonary sarcoid. About 10 years later it was changed to chronic sarcoidosis. 2 years ago I was diagnosed with asbestosis. Apparently have had it for about 10+ years. My pulmonoligist has figured my exposure to asbestos happened while I was in the Navy in the early 80's. I have tried to find info on asbestos causing sarc but, it has been very difficult. In my case the asbestos is the only thing that makes sense for tne cause of the sarcoid. The prevailing theorys that are currently out there dont fit except for the toxin altering the immune system.
If anyone knows of some information I would greatly appreciate it if they would share. I have seen case studies where the individual has asbestosis and sarcoid but they do not talk about weather the sarcoid is caused by asbestos. Thanks for your help.

Report post

21 replies. Join the discussion

Very interesting, I have neurosarcoidosis for over 8 yrs and also was in the navy late 60's early 70's and worked on piping systems on aircraft carriers many of those were covered in asbestos. I also would like to know if there is some connection between sarcoidosis and asbestosis. Wish I could help willie99202 but I have been unable to find any connection myself. Good luck to both of us.

Report post

Hello, I was diagnosed with sarcoid at age 30. I am now 52. Recently I was thinking back at my youth and I remembered going on a camping trip on my bycycle at age 15. I remember I had to stop many times to catch my breath and I remember wondering why I was so out of breath. Well, your post reminded me that at age 14 I insulated my father's attic with that poured in insulation that is now banned because it contained asbestos. Remember that product called Vermiculite? Bag by bag I hand poured that crap into the rafters. Of course being a kid I did not use a mask.
Very interesting in a very bad way
Tim

Report post

Hi I hope you've read my earlier posting on environmental causes to autoimmune diseases. It will explain my interest in what you speak about and the concerns you have, which in my opinion are justified and I say that after some years of research purely for personal reasons, as both my husband and I suffer from the same rare autoimmune disease as a result of exposure to wood dust from wood composite boards, both of which contained crystlline silica and asbestos too. One of the wood composite boards he worked with was an asbestos cement board that was used for ship building, as wall partitions and was laminated. The boards had to fire retardant hence the asbestos (it also had a high % of c/silica) but when that was banned it was replaced with crystalline silica, another carcinogen, because it's properties are very much like asbestos. Wood dust per se and asbestos are both group 1 carcinogens too. I was affected because for many years now I've washed all his work clothes and it is well documented that workers unwittingly bring these things home on their clothes, hair and skin to contaminate homes and expose loved ones.

Crystalline silica ( respirable dust) has been linked strongly to autoimmune disease and more recently so has asbestos too. They found high incidence rates of autoimmune disease in Libby, Montana where there is a vermiculite mine. The research into this side of AD is very new really, that's why there's not as much as there should be considering how rapidly the number of cases of AD is rising by. There had been much research into the asbestos related diseases but what they noticed were these AD's. Not sure if Sarc was one of them but what you have to understand about these peer reviewed studies/publications is that they are geared only to study certain aspects.

The processes must surely be the same or very similar no matter what the type of AD. Google 'silica and autoimmune disease' and also 'asbestos and autoimmune disease', see what you think. try 'Sarcoid like autoimmune disease - autoimmune disease 9/11'

They have also found high rates of autoimmune disease in those exposed to the 9/11 World Trade Center dust clouds. It is documented that they've had a 'mystery' 'sarcoid like granulomatous disease - autoimmune disease'. The dusts were mixed dusts of course with many contaminants of which silica, asbestos, heavy metals were only a few of the hundreds. They phoned me after I contacted them about it because the symptoms sounded so much like Wegener's Granulomatosis which is what we suffer from. We spoke for an hour. I've recommended that they include the ANCA blood test as part of their routine health monitoring that they do for the victims/first responders, I hope they do, it's not a test just an indicator of and may be useful and may help to identify the problem and get proper treatment far sooner.

Check out my earlier post. Would really like to speak more with anyone who is interested.

Report post

Obviously, as you know, sarcoidosis is a diagnosis of exclusion. Baughman wrote that you can never be truly certain that it is in fact sarcoidosis. To me, the term sarcoidosis means they have stopped looking for the cause. I think that if the name sarcoidosis did not exist....perhaps the doctors would look further into the cause of the granulomas and scarring. I see a sarcoidosis specialist and I am still fighting to get an infectious disease workup....how do they call it sarcoidosis before doing all the excluding? I have been asking for a bronchoscopy for a couple of years since I've had a mediastinoscopy and my sputum samples are too small to culture....meaning....no one has taken any kind of sample from inside my lungs, just analyzed the swollen lymph nodes on the exterior and called it a day. Now that I am getting worse, they are finally going to do the bronchoscopy.

I think toxicologists and infectious disease should be the first ones to see us before we are stuck in the world of prednisone, pulmonologists and rheumatologists.

I too wonder if your asbestosis was misdiagnosed as sarcoidosis. The chest x-rays can looks the same.

Report post

Hi I'm really sorry that you're having so much trouble and like you agree that it makes you wonder how they diagnose when so much isn't done to rule out or rule in. We don't have asbestosis we have Wegener's GRanulomatosis an autoimmune disease very much like Sarc. My point was that asbestos has been linked to causing autoimmune disease too.

You said 'I think toxicologists and infectious disease should be the first ones to see us before we are stuck in the world of prednisone, pulmonologists and rheumatologists.'. I agree... a lot! I've had so many problems over 30 years with the medical world that I could write a book!

As you say things can look so much the same on x-rays and may not even show up at all but yet the disease is still there. We've had to have our diagnosis checked because they think we may be the only husband and wife couple to have WG and they couldn't believe it. I was diagnosed in 1999 and my husband in 2006. Genetics plays a big part in these things too.

We shouldn't have to keep pushing and insisting on the correct tests and treatments but that's sadly what we have to od most of the time. Very wrong I agree that they play a kind of Russian roulette with our lives and at the end of the day it's all about costs usually. crazy world we live in!!

I do hope that everything works out for you. Keep posting and spreading the word, it's good to let others know and medics read these sites too. Let's hope one day some of them learn to listen. I always remind Doctors that their ears are not just for hanging the stethoscope from - they're for listening with - especially to their patients!!

Take care

Report post

I may have come into contact with asbestos. A building I used to work in burned down after I had left and it turned out the roof contained asbestos. I worked in that place until about 8 months before I first got uveitis which was my first noticeable symptom of sarcoidosis.

Report post

Thank you. ...And I'm sorry you two have had a hell of a time.

I think part of the problem is that appointments have been shorter and fewer as the insurance companies decrease payouts. Some of the doctors seem to care but seem pushed to the limit. One of my biggest hurdles is the nurse....it's amazing how one person in a position of power can make your life hell.

I have been to a few doctors (for non sarc issues) who are rated top 1% by their peers....the common thread I have noticed....they or their nurse write down every point you make and they use it as their checklist....very organized and great follow through. Like in Willie's case....did someone ask detailed questions and follow up questions in the sarc diagnosis 20 years ago?

I am sorry that both you and your husband have WG. You sound like you are doing everything you can and are your own advocate. That's a feat accomplished.

Report post

The only thing I can figure and seems to fit is that the asbestos being a toxic substance goes in and changes the immune system over a period of time. My doctors tend to agree with me that this is what has happened. We only found the asbestosis by accident. They wete doing a mri on my abdomin because of pain and they caught the bottom part of my lungs and found it. I really would have thought there would be some research done on this I just cant find anything. Maybe u should have them check ur lungs for asbestos fibers. If u have them then there could be a connection. Good luck!

Report post

Thanks Willie, I am going to bring it up on my next visit to my Dr. see what happens. I had a lot of exposure to asbestos over 4 yrs. 2 complete ship overhauls and 1 decommissioning lots and lots of dust.
good luck to you!

Report post

And maybe as a result of this you were exposed to it by way of the type of asbestos cement board that I mentioned above. In the UK it was called Asbestolux but it had other trade names too such as Marinite. It looked just like a light grey plasterboard like the type you line walls/ceilings with, only they laminated and used it for wall partitioning. My husband worked with this for 5 years. Even the red glue had to have asbestos fibers added to help it adhere properly. when concerns were raised by those laminating/machining it they were told it was a 'safe' form of asbestos but there is no 'safe' level. It will also have contained a high % of crystalline silica. Both c/silica and asbestos have been linked to causing autoimmune disease but silica the strongest: http://www.mssm.edu/about-us/news-and-events/investigation-assesses-health- impact-of-one-of-the-nations-largest-environmental-disasters

We believe this caused our AD. We both have the same rare type and that can't be a coincidence. See my other posts on this.

Report post

hi Hammer_sleep,

Thought this may interest you - Extract '...There is evidence that even relatively low-level exposures to Libby asbestos can cause serious scarring lung diseases, which markedly impair respiratory function, as well as asbestos-related cancers like lung cancer and mesothelioma, which occur at higher rates among the Libby population than elsewhere in the United States. The health crisis potentially extends far beyond the borders of Libby, since millions of homes and businesses in North America have used vermiculite from Libby as attic insulation, fireproofing and soil conditioner. The ore from Libby was shipped by rail to 49 plant locations throughout North America and the Caribbean for processing, exposing many more workers and communities to the hazardous dust...' taken from http://www.mssm.edu/about-us/news-and-events/investigation-assesses-health- impact-of-one-of-the-nations-largest-environmental-disasters ...' but there are others too.

Report post

My daughter was diagnosed with Pulmonary Sarc when she was 20, her entire school childhood we were told she had seasonal asthma. The school she went to would do asbestos cleanup every summer, back then they just tarp-ed off the area, and then the cleaning ladies would clean up before school started. My husband works for an aluminum company and we were required to wash his clothes, which had beryllium dust on them so it was in the house. We live in an area with 2 aluminum mills and one GM plant that has been closed down for awhile. She had 2 friends who went through the same thing during school years, inhalers, meds etc, and both have sarc. CC believes it's environmental as well as genetic, they just don't have all the proof yet. Some get it and some don't because of our genes. Problem is no one wants to take the blame, can you imagine the lawsuits! I have no doubt my daughter and I got it from the school, (I went there as well), my dad was a navy man, subs mostly but the bases we lived at and base housing had asbestos. But who do you blame...if they would take the money and look at a cure or ways to better maintain it, but that's not what would happen, lawyers would get major torte funds, we'd get nothing and still be sick!

Report post

Not sure how relevant this is but I have neurosarc and when I was in my early 20's I demolished my mother's asbestos garage throwing it into a large skip with bits flying everywhere. Coincidence?

Report post

Yes undoubtedly genetics does play a big part, as I explained in a different post, it certainly does with autoimmune disease, cancers in general and many others too. That's why some smokers die very young from smoking related diseases and some suffer nothing and remain unaffected and survive until very old age. People exposed to asbestos will suffer from different asbestos related diseases. Not everyone exposed to crystalline silica will suffer from the same autoimmune disease if any at all and that's said to be down to genetics. Hence the saying 'GENETICS LOADS THE GUN, THE ENVIRONMENT PULLS THE TRIGGER' and it's so true.

There are then often long latency periods too with disease caused by environmental/occupational exposures too such as with asbestos and smoking, there can be very early symptoms in some and yet others can go for 40 years before any are shown. The world it seems has learnt nothing from the terrible legacy with been left with as a result of things like asbestos and smoking and many others too.

There is a thinking that if it looks like asbestos it may behave like asbestos and crystalline silica, which is ubiquitous and in so many products and so on possibly far more than asbestos was, was used as a substitute to asbestos when that was banned. However, c/silica was also later classified as a group 1 carcinogen too. Both asbestos and c/silica are very similar in properties in that they're both very sharp and jagged, hence 'crystalline', and so when inhaled as a respirable sized dust both are harmful to health. You only have to look at what happened to the victims of the WTC, those who inhaled the dust from the massive dust clouds that contained many contaminants. Any dust when inhaled can be harmful but especially to someone who is genetically predisposed. It's the very small particles that are the most harmful, they're so small they cannot be seen by the naked eye, nano size for example, that's why so many are said to be dying of air pollution and dementia and the like. These are so small they can cross the blood brain barrier and pass throught he alveolar in the lungs and can then travel to any part of the body. Makes sense when you think about it. When you see smoke no matter whether it's from a cigarette or a huge chimney or Biomass Incinerator what you're seeing are the fine particles contained within it but there are others far smaller that you can't see, so just because you don't see them doesn't mean they're not there. The problem is that monitoring is not done past a certain size under PM10 or PM2.5 because they wrongly believed that the small were not harmful because you can't see them. That's not true. It's not the dust you can see that is the most harmful, it's the dust you can't see that is. Our respiratory and immune system is only designed to expel or to deal with the larger particles mostly, that's why we cough, we cough to expel them but some are not coughed up in this way, especially with small sharp, jagged particles that get lodged in the tissues of the lungs. some of these the immune system cannot deal with either such as c/silica. Normally the immune system releases macrophages that engulf the particle and then processes it to remove the substance from your system but with some substances the macrophages simply can't do this, so they remain in the body to cause further harm, to cut a long story short, the process involves an inflammatory response and that destroys healthy tissue too and so hence an autoimmune response. When the body is overwhelmed the end result, depending on genetics, is an autoimmune disease process that can be difficult and at times impossible to stop. This is a very basic and simplistic explanation.

Who do we trust to ensure we are safe? Look at what happened at the WTC (which by the way happens a lot in situations such as this), initially everyone was told that the dust was safe, had been tested even, when nothing could have been further from the truth. How many lives could have been saved or spared from being ravaged with ill health and disability, lives of those still living but devastated forever? Sadly many thousands is the answer. There are many more victims to follow, the true toll of the disaster won't be seen for many years yet possibly for decades to come.

Why does there have to be thousands of unecessary deaths, most of which were avoidable, before the world sits up and takes note but more importantly takes action to prevent disease caused in this way. Why does no one wonder why cancers are on the increase or why we get them at all, or why we get cancer clusters or why there seems to be increases on almost epidemic proportions of autoimmune disease.

By the way, I'm not an overbearing environmentalist, I'm not a nutty scientist, I'm only a victim and sadly victims don't matter in this world. Victims are usually something to be ignored until the victim body count gets too high to be hidden or ignored and serves to speak for itself, shouts out even. I'm a victim that's shouting out now before I become just another statistic on a death certificate and hope others will follow. Who knows maybe one day someone will listen if we shout loud enough.

When we will ever learn to learn early knowing what we already know, instead of too late when it's too late for so many.

Report post

I think no coincidence at all.

Report post

In reading the posts so far it seems like asbestos is a common thread to all of us. This is why I am kinda stumped because I cant find any information. I know that there are alot more people like us out there who have sarcoid and have the asbestos exposure. I wonder if it would be like this if the effects of asbestos showed up earlier than 15+ years. I also wonder what would have been the response of my doctors if I had gotten the asbestosis then years later got sarcoid? I have been fortunate in my pulmonoligists. In 02 my pulmonoligist that I just went to diagnosed me with chronic sarcoid. In 2010 we found the asbestosis when we talked in early 2011 he explained to me what was going to happen. End result dead. Nothing could be done about it. At the end of 2011 my Dr. retired so I started seeing his brother in the same office. When we talked he told me there was options like surgery abd that tnere was no way sarc could becaused by asbestos. He is a good Dr but ive come to relize certain things and I believe he has to. Surgery isnt an option. I dont have any lung to spare, u take out section of bad u also remove what little good there was to. I currently have a diffusion rate between 19 and 20%. Cant avford to lose anything thats good.
I also dont geal very well, 2 years ago I had a kidney stone they went in and broke it up put there little tube up there to keep things open while I healed. They kept in there for the normal time then pulled it out. Only problem was I heal very slowly because of the suppressed immune system. I ended up losing the kidney because of scare tissue that formed after the tube was pulled out. So surgery on my lungs would just cause more scar tissue than what I have already. My Dr is starting to understand these things and also that asbestos changes our immune systems in ways we dont know or understand.
I keep hearing about genetics but I dont by that. No one else in my family going back 4 generations from me has sarcoid. My father served in the navy as a boiler tech for 4 years plus as a mechanic for many years. No problems with him except for a spot on his lungs that has been there for many years. My siblings dont have anything so I dont think genetics plays a role here otherwise somebody else in my family or extended family should have it.

Report post

In reading the posts so far it seems like asbestos is a common thread to all of us. This is why I am kinda stumped because I cant find any information. I know that there are alot more people like us out there who have sarcoid and have the asbestos exposure. I wonder if it would be like this if the effects of asbestos showed up earlier than 15+ years. I also wonder what would have been the response of my doctors if I had gotten the asbestosis then years later got sarcoid? I have been fortunate in my pulmonoligists. In 02 my pulmonoligist that I just went to diagnosed me with chronic sarcoid. In 2010 we found the asbestosis when we talked in early 2011 he explained to me what was going to happen. End result dead. Nothing could be done about it. At the end of 2011 my Dr. retired so I started seeing his brother in the same office. When we talked he told me there was options like surgery abd that tnere was no way sarc could becaused by asbestos. He is a good Dr but ive come to relize certain things and I believe he has to. Surgery isnt an option. I dont have any lung to spare, u take out section of bad u also remove what little good there was to. I currently have a diffusion rate between 19 and 20%. Cant avford to lose anything thats good.
I also dont geal very well, 2 years ago I had a kidney stone they went in and broke it up put there little tube up there to keep things open while I healed. They kept in there for the normal time then pulled it out. Only problem was I heal very slowly because of the suppressed immune system. I ended up losing the kidney because of scare tissue that formed after the tube was pulled out. So surgery on my lungs would just cause more scar tissue than what I have already. My Dr is starting to understand these things and also that asbestos changes our immune systems in ways we dont know or understand.
I keep hearing about genetics but I dont by that. No one else in my family going back 4 generations from me has sarcoid. My father served in the navy as a boiler tech for 4 years plus as a mechanic for many years. No problems with him except for a spot on his lungs that has been there for many years. My siblings dont have anything so I dont think genetics plays a role here otherwise somebody else in my family or extended family should have it.

Report post

Hi, We have to take the blinkers off and sometimes think outside the box. We need maybe to look at what causes autoimmune disease in general rather than just Sarcoidosis or Wegener's Granulomatosis and so on. Many of them are so similar it's difficult for Doctors to keep them apart. They say genetics plays a part for the reasons I explained above and on other posts on here. We're all made differently. there are as you may know, between 80-100 autoimmune diseases now on the list with around 40 being assessed and may be added to that. So when they mention genetics it means that other families members will possibly have any one of them, you won't necessarily have the same. you may find that a relative even quite far back had psoriasis or Rhuematoid arthritis and so on. We both have Wegener's WG but I have a cousin with Bechets disease another rare autoimmune disease. they also say that if your suffer from one AD that you will be likely to suffer from a 2nd. My husband has Wegener's G WG but also has psoriasis and has an auntie with RA. So don't rule out genetics just yet. Your relatives don't need to have suffered from sarc for their to be a genetic predisposition. this is part of the problem. If exposure to dust was causing cancer for example you will likely get a cancer cluster of the same cancer but no one realises that there is an autoimmune disease cluster because there are so many and because lots of people suffering from an autoimmune disease don't realise it is one and some are so rare too. diabetes type 1 and MS have recently been added to the list for example. During my research I came across a group of woodworkers and their partners who were discussing if their MS may be as a result of their exposure to wood dust. Wood dust per se is a group 1 carcinogen on the same level as asbestos but few people know that even most doctors.

Yes it does seem from reading as many posts as I can that a large number of the sufferers of Sarc do appear to have had an exposure to respirable sized dust or asbestos, silica or particulates. It's something that we're inhaling it seems and asbestos exposure seems common. Too much of a coincidence to me. I wondered if autoimmune disease was a precursor of somthing else, as it is after all an inflammatory response and does that cause cell death or other problems for the future. We have to consider the long latency periods that some diseases have too and no one ever considers exposure of partners or if their at risk from exposure brough home by a partner.

Report post

It's hard to say if any family members have had these diseases, because they didn't know about them and they doctored differently. My father is 71, has SNF, and probably sarc of the lungs, but he won't look into it, and I remember my grandmother always being in pain and tired, they attributed it to Osteoarthritis, but you wonder, her feet and hands were always numb, her legs ached so who's to say. My grandfather died of lung cancer, or complications to it and he was a welder for many many years. As far a genetics go, it's my understanding from research and doctors input, we have some defective genes, and when the environment kicks in those genes become sick, an the diseases develop. I was only diagnosed 5 years ago now, but have been dealing with these issues to one degree or another since I was in my 20's. I was told i had COPD when I was 25, the fatigue was related to female issues, had all that removed when I was 32, nothing changed. So I bet I have had this D.. disease since then. It's what the medical world knows at the time!

Report post

Doctors don't seem to be able to admit they don't know and that's part of the problem and try and blame symptoms os something rather than admit that. also medical knowledge has improved dramatically to what it was and so much more is known these days that is true. However, enough was known previously it just hasn't always been used all that well by those in the medical profession. Even doctors should provide proof of what they say, they're just not used to be challenged in that way but thanks to the internet patient is increasing, especially from talking to and learning from others on sites such as this. Patient power!!! Some Doctors hate knowledgable patients but I firmly believe that we all should become as knowledgable as we can be and should check things out more. Not easy I know but we should try at least.

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support FSR

Help the Foundation for Sarcoidosis Research reach its goals and support people like yourself by making a donation today.

Donate to the Foundation for Sarcoidosis Research

Discussion topics

Help and information from FSR

Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

Community leaders