Infant Radiation for Enlarged Thymus Gland 1940's & 1950

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RE: Infant Radiation for Enlarged Thymus Gland 1940's & 1950

by suggi on Thu Mar 14, 2019 08:01 PM

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On Mar 14, 2019 7:31 PM suggi wrote:

UPDATE - I have found some very interesting articles re our problems.  However it is OLD (1994).  There was a Submarine Surviors group , quincy, MA taking calls from citizens radiated as kids as well as military folk.  I found a tel # but it is disconnected and can not find Submarine Survivors anymore.  They were attempting to get compensation for our troubles.  Seattle Times interviewed citizen Lisa mandel of manchester, CT who was 38 at the time so should be62 or so now.  Tried to find her but was unsuccessful - used Anywho tel dirctory.  If anyone wants to followup on this please do.  James Garrity was heading up the project.  IF LISA MANDEL OR JAMES GARRITY IS OUT THERE AND SEES THIS POST PLEASE GET IN TOUCH HERE. For everyone else, hopfully someone can dig deeper than I could.  Here is the articlle: community.seattletimes.nwsource.com "" target="_blank" rel="nofollow">http://community.seattletimes.nwsource.com " target="_blank" rel="nofollow">community.seattletimes.nwsource.com /archive/?date=19940612&slug=1915268

Hoping someone will respond.  Thank you.

I did try the other person listed in the article, Judith Wood in CT but apparently it is not her so again - a dead end.

RE: Infant Radiation for Enlarged Thymus Gland 1940's & 1950

by lt1221 on Fri Mar 15, 2019 08:33 AM

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On Nov 03, 2018 4:55 PM bezneez wrote:

I just noticed your post, as I've just begun researching the effects of radiation on the Thymus.    I was irradiated at 6 months of age, in 1947, as I was spitting up most of what I was fed. I don't know how many times, etc.  I just know that the  hospital where the radiation was done (St. Elizabeth's, in Appleton, WI) sent me a letter at age 30, saying the radiation had caused lumps on the thyroid and to have mine checked.   Sure enough, I had one - and had a partial thyroidectomy.  As the years have passed, I have had endless auto-immune illnesses, one after the other.  The latest, was necrotizing vasculitis, which neccesitated open heart surgery to replace the aortic valve and part of the aorta, which had been turned to mush.  There is no history of auto-immune illnesses running in my family.  These illnesses over the years, prevented me from ever being able to build up "a head of steam" on a career - as I would gain traction and then slowly grow ill - over and over again. I'm 71 years of age and angry that I was robbed of the life I expected to be able to build.

I just read your post which sounded just like me and I had to share with you what one wonderful doctor who took the time to figure out what was going on with me which wasn't until I was in my early 60's.  Mind you  doctor 40 years prior had suspected the same thing.  It turned out that I have Secondary Adrenal Insufficiency, Hypoadrenalism, Hydrocortisolism, Hashimoto's all due to the fact that the radiation killed my thyroid and pituitary glands.  Since that time I have been on Hydrocortisone and have the Solu-Cortef shots in case I. Am unable to absorb the tablets due to nausea and/ or throwing up/ or crisis.  I will never forget my first crisis shortly after being diagnosed and when I called him to tell him I. Thought that I was in trouble, he confirmed that and told me to go get the tests done and immediately afterward take a certain increased dosage of Hydrocortisone for so many days.  When the tests came back, he called me and the first thing he said was "I will never question anything you tell me, your Cortisol was at 0 and you called in the nick of time as the next thing that would have happened  is the start of organ failure".  Since then we have determined that when I had sepsis I was also in adrenal crisis as I went into kidney failure and now have only one working kidney.  Since then I have had numerous crises but at least now I know what to do and the interesting thing is that Sepsis and Adrenal Crisis have similar symptoms.  I would recommend seeing and endocrinologist who lists at or near the top of their specialties - ADRENAL because if they don't it will not help you as it is a very intricate specialfy and as a result many doctors avoid it and are afraid to treat for fear of doing the wrong thing.  Luckily I know what to do and many doctors thankfully have relied on my knowledge of what is to be done.  I so dressed having to find a new one when my doctor retired but I lucked out and found one who also has a nurse practitioner.  My case is very complicated  as I have several auto-immune diseases, heart problems and last but not least was exposed to Agent Orange as my ex-husbAnd was in Vietnam.  My autonomic doctor told me to put that my thymus was radiated at the top of my list of diagnoses as the list of my diagnoses as they are finding out the repercussions of our radiation of the thymus all the time and at that time they had just  found a relationship to heart issues.  We are now trying not to figure out what is causing me to have syncope as the injuries as a result are getting worse.  I hope this helps you, but feel free to contact me if you have any questions. 

RE: Infant Radiation for Enlarged Thymus Gland 1940's & 1950

by robinlynn5 on Fri Mar 15, 2019 09:15 AM

Quote | Reply

On Mar 15, 2019 8:33 AM lt1221 wrote:

On Nov 03, 2018 4:55 PM bezneez wrote:

I just noticed your post, as I've just begun researching the effects of radiation on the Thymus.    I was irradiated at 6 months of age, in 1947, as I was spitting up most of what I was fed. I don't know how many times, etc.  I just know that the  hospital where the radiation was done (St. Elizabeth's, in Appleton, WI) sent me a letter at age 30, saying the radiation had caused lumps on the thyroid and to have mine checked.   Sure enough, I had one - and had a partial thyroidectomy.  As the years have passed, I have had endless auto-immune illnesses, one after the other.  The latest, was necrotizing vasculitis, which neccesitated open heart surgery to replace the aortic valve and part of the aorta, which had been turned to mush.  There is no history of auto-immune illnesses running in my family.  These illnesses over the years, prevented me from ever being able to build up "a head of steam" on a career - as I would gain traction and then slowly grow ill - over and over again. I'm 71 years of age and angry that I was robbed of the life I expected to be able to build.

I just read your post which sounded just like me and I had to share with you what one wonderful doctor who took the time to figure out what was going on with me which wasn't until I was in my early 60's.  Mind you  doctor 40 years prior had suspected the same thing.  It turned out that I have Secondary Adrenal Insufficiency, Hypoadrenalism, Hydrocortisolism, Hashimoto's all due to the fact that the radiation killed my thyroid and pituitary glands.  Since that time I have been on Hydrocortisone and have the Solu-Cortef shots in case I. Am unable to absorb the tablets due to nausea and/ or throwing up/ or crisis.  I will never forget my first crisis shortly after being diagnosed and when I called him to tell him I. Thought that I was in trouble, he confirmed that and told me to go get the tests done and immediately afterward take a certain increased dosage of Hydrocortisone for so many days.  When the tests came back, he called me and the first thing he said was "I will never question anything you tell me, your Cortisol was at 0 and you called in the nick of time as the next thing that would have happened  is the start of organ failure".  Since then we have determined that when I had sepsis I was also in adrenal crisis as I went into kidney failure and now have only one working kidney.  Since then I have had numerous crises but at least now I know what to do and the interesting thing is that Sepsis and Adrenal Crisis have similar symptoms.  I would recommend seeing and endocrinologist who lists at or near the top of their specialties - ADRENAL because if they don't it will not help you as it is a very intricate specialfy and as a result many doctors avoid it and are afraid to treat for fear of doing the wrong thing.  Luckily I know what to do and many doctors thankfully have relied on my knowledge of what is to be done.  I so dressed having to find a new one when my doctor retired but I lucked out and found one who also has a nurse practitioner.  My case is very complicated  as I have several auto-immune diseases, heart problems and last but not least was exposed to Agent Orange as my ex-husbAnd was in Vietnam.  My autonomic doctor told me to put that my thymus was radiated at the top of my list of diagnoses as the list of my diagnoses as they are finding out the repercussions of our radiation of the thymus all the time and at that time they had just  found a relationship to heart issues.  We are now trying not to figure out what is causing me to have syncope as the injuries as a result are getting worse.  I hope this helps you, but feel free to contact me if you have any questions. 

Dear It1221,

I'm so sorry you've gone thru all of this, but sharing all the detail is helpful to know. Even though I was irradiated several times as an infant due to enlarged thymus gland in 1951, I've been extraordinarily healthy my entire life with one exception - I've been obese all my life starting at about 7-8 yrs old, and unable to loose it. Thank you for sharing your medical history with us.

RE: Infant Radiation for Enlarged Thymus Gland 1940's & 1950

by lt1221 on Fri Mar 15, 2019 10:14 AM

Quote | Reply

On Mar 15, 2019 9:15 AM robinlynn5 wrote:

On Mar 15, 2019 8:33 AM lt1221 wrote:

On Nov 03, 2018 4:55 PM bezneez wrote:

I just noticed your post, as I've just begun researching the effects of radiation on the Thymus.    I was irradiated at 6 months of age, in 1947, as I was spitting up most of what I was fed. I don't know how many times, etc.  I just know that the  hospital where the radiation was done (St. Elizabeth's, in Appleton, WI) sent me a letter at age 30, saying the radiation had caused lumps on the thyroid and to have mine checked.   Sure enough, I had one - and had a partial thyroidectomy.  As the years have passed, I have had endless auto-immune illnesses, one after the other.  The latest, was necrotizing vasculitis, which neccesitated open heart surgery to replace the aortic valve and part of the aorta, which had been turned to mush.  There is no history of auto-immune illnesses running in my family.  These illnesses over the years, prevented me from ever being able to build up "a head of steam" on a career - as I would gain traction and then slowly grow ill - over and over again. I'm 71 years of age and angry that I was robbed of the life I expected to be able to build.

I just read your post which sounded just like me and I had to share with you what one wonderful doctor who took the time to figure out what was going on with me which wasn't until I was in my early 60's.  Mind you  doctor 40 years prior had suspected the same thing.  It turned out that I have Secondary Adrenal Insufficiency, Hypoadrenalism, Hydrocortisolism, Hashimoto's all due to the fact that the radiation killed my thyroid and pituitary glands.  Since that time I have been on Hydrocortisone and have the Solu-Cortef shots in case I. Am unable to absorb the tablets due to nausea and/ or throwing up/ or crisis.  I will never forget my first crisis shortly after being diagnosed and when I called him to tell him I. Thought that I was in trouble, he confirmed that and told me to go get the tests done and immediately afterward take a certain increased dosage of Hydrocortisone for so many days.  When the tests came back, he called me and the first thing he said was "I will never question anything you tell me, your Cortisol was at 0 and you called in the nick of time as the next thing that would have happened  is the start of organ failure".  Since then we have determined that when I had sepsis I was also in adrenal crisis as I went into kidney failure and now have only one working kidney.  Since then I have had numerous crises but at least now I know what to do and the interesting thing is that Sepsis and Adrenal Crisis have similar symptoms.  I would recommend seeing and endocrinologist who lists at or near the top of their specialties - ADRENAL because if they don't it will not help you as it is a very intricate specialfy and as a result many doctors avoid it and are afraid to treat for fear of doing the wrong thing.  Luckily I know what to do and many doctors thankfully have relied on my knowledge of what is to be done.  I so dressed having to find a new one when my doctor retired but I lucked out and found one who also has a nurse practitioner.  My case is very complicated  as I have several auto-immune diseases, heart problems and last but not least was exposed to Agent Orange as my ex-husbAnd was in Vietnam.  My autonomic doctor told me to put that my thymus was radiated at the top of my list of diagnoses as the list of my diagnoses as they are finding out the repercussions of our radiation of the thymus all the time and at that time they had just  found a relationship to heart issues.  We are now trying not to figure out what is causing me to have syncope as the injuries as a result are getting worse.  I hope this helps you, but feel free to contact me if you have any questions. 

Dear It1221,

I'm so sorry you've gone thru all of this, but sharing all the detail is helpful to know. Even though I was irradiated several times as an infant due to enlarged thymus gland in 1951, I've been extraordinarily healthy my entire life with one exception - I've been obese all my life starting at about 7-8 yrs old, and unable to loose it. Thank you for sharing your medical history with us.

You're very welcome.  We were irradiated in the same year.  It would be interesting to see the outcomes by the year of radiation.  Keep me posted on how you are doing.

RE: Infant Radiation for Enlarged Thymus Gland 1940's & 1950

by MichaeleLux on Fri Apr 26, 2019 07:33 AM

Quote | Reply

On Mar 15, 2019 10:14 AM lt1221 wrote:

On Mar 15, 2019 9:15 AM robinlynn5 wrote:

On Mar 15, 2019 8:33 AM lt1221 wrote:

On Nov 03, 2018 4:55 PM bezneez wrote:

I just noticed your post, as I've just begun researching the effects of radiation on the Thymus.    I was irradiated at 6 months of age, in 1947, as I was spitting up most of what I was fed. I don't know how many times, etc.  I just know that the  hospital where the radiation was done (St. Elizabeth's, in Appleton, WI) sent me a letter at age 30, saying the radiation had caused lumps on the thyroid and to have mine checked.   Sure enough, I had one - and had a partial thyroidectomy.  As the years have passed, I have had endless auto-immune illnesses, one after the other.  The latest, was necrotizing vasculitis, which neccesitated open heart surgery to replace the aortic valve and part of the aorta, which had been turned to mush.  There is no history of auto-immune illnesses running in my family.  These illnesses over the years, prevented me from ever being able to build up "a head of steam" on a career - as I would gain traction and then slowly grow ill - over and over again. I'm 71 years of age and angry that I was robbed of the life I expected to be able to build.

I just read your post which sounded just like me and I had to share with you what one wonderful doctor who took the time to figure out what was going on with me which wasn't until I was in my early 60's.  Mind you  doctor 40 years prior had suspected the same thing.  It turned out that I have Secondary Adrenal Insufficiency, Hypoadrenalism, Hydrocortisolism, Hashimoto's all due to the fact that the radiation killed my thyroid and pituitary glands.  Since that time I have been on Hydrocortisone and have the Solu-Cortef shots in case I. Am unable to absorb the tablets due to nausea and/ or throwing up/ or crisis.  I will never forget my first crisis shortly after being diagnosed and when I called him to tell him I. Thought that I was in trouble, he confirmed that and told me to go get the tests done and immediately afterward take a certain increased dosage of Hydrocortisone for so many days.  When the tests came back, he called me and the first thing he said was "I will never question anything you tell me, your Cortisol was at 0 and you called in the nick of time as the next thing that would have happened  is the start of organ failure".  Since then we have determined that when I had sepsis I was also in adrenal crisis as I went into kidney failure and now have only one working kidney.  Since then I have had numerous crises but at least now I know what to do and the interesting thing is that Sepsis and Adrenal Crisis have similar symptoms.  I would recommend seeing and endocrinologist who lists at or near the top of their specialties - ADRENAL because if they don't it will not help you as it is a very intricate specialfy and as a result many doctors avoid it and are afraid to treat for fear of doing the wrong thing.  Luckily I know what to do and many doctors thankfully have relied on my knowledge of what is to be done.  I so dressed having to find a new one when my doctor retired but I lucked out and found one who also has a nurse practitioner.  My case is very complicated  as I have several auto-immune diseases, heart problems and last but not least was exposed to Agent Orange as my ex-husbAnd was in Vietnam.  My autonomic doctor told me to put that my thymus was radiated at the top of my list of diagnoses as the list of my diagnoses as they are finding out the repercussions of our radiation of the thymus all the time and at that time they had just  found a relationship to heart issues.  We are now trying not to figure out what is causing me to have syncope as the injuries as a result are getting worse.  I hope this helps you, but feel free to contact me if you have any questions. 

Dear It1221,

I'm so sorry you've gone thru all of this, but sharing all the detail is helpful to know. Even though I was irradiated several times as an infant due to enlarged thymus gland in 1951, I've been extraordinarily healthy my entire life with one exception - I've been obese all my life starting at about 7-8 yrs old, and unable to loose it. Thank you for sharing your medical history with us.

You're very welcome.  We were irradiated in the same year.  It would be interesting to see the outcomes by the year of radiation.  Keep me posted on how you are doing.

I was radiated in 1945. I was an infant and stopped breathing. I was rushed to the ER of Jefferson Hospital in Birmingham, Alabama, and it was determined that I had an enlarged thymus gland. The procedure at that time was deep x-ray therapy. I don't know how many treatments I received, but the thymus was finally shrunk to the right size. When my mother asked one of the doctors if the deep x-ray treatments would have any bad side effects on me, he said probably nothing until maybe when she gets to the age of puberty. Well, I had very acute cystic acne as a teenager, and it has left me with many scars that required me to undergo two dermabraisions sna some chemical peels, but the scars are still bad. A few years ago I was diagnosed with severe arthritis in my hands. I also have been having trouble with arthritis in my lower back since i was in my forties. My rheumatologist thinks it may be psoriatic arthritis, which is an autoimmune disease. Now I am 73 and have just been diagnosed with one of two possible diseases, both of which I have never heard of before, and both of which are autoimmune diseases. It is either Lichen Planopilaris or Frontal Fibrosing Alopecia. They are both inflammitory scalp conditions that may progress rapidly or may simmer slowly for years. They are both autoimmune diseases where the white cells attack the hair follicles causing scarring, burning, severe itching, and eventually balding of the hairline of mostly women, although men also get it. Eventually, the balding goes further and further from the original hairline until the person has lost most, if not all of their hair. It is not contageous. There is no known cause except inflammation. At this time there is no cure. The medicines only try to slow down the process, and sometimes the meds don't help at all or cause worse symptoms. The doctors usually do a biopsy first to determine which of the diseases is present. My biopsy only showed "acute folliculitis." My dermatologist still insists that it is one of the mentioned diseases. From the description and photos of people with the disease, I must agree with her. My entire scalp is quite red, and it itches. The part of my face by my hairline, has little black and red dots at the roots of the hair follicles. By my temples on either side, I have so far lost one inch of my hairline. The skin left behind is very light colored (almost white) and very smooth. This is known as scarring. I am also starting to break out in acne-like pimples again. There are also little pimples on my scalp. No one in my family has  ever had this. It is not inherited.  I mentioned the fact that I was irradicated as an infant for the enlarged thymus gland to my dermatologist (scalp specialist), but she didn't know whether it had anything to do with this . These diseases are considered quite "rare." but there are support groups for both of them on Facebook and even others in the city. I live in a suburb of New Orleans. The medicines don't really cure the diseases, but sometimes they slow down the process and/or ease the pain, burning, inflammation, and itching involved. They have bad possible side effects. One can adversely affect the retinas of the eyes. The other is big doses of antibiotics which can cause resistance of antibiotics to fight infections if I get an infection in the future. Sometimes pimple-like bumps appear on the scalp. I was told that dyeing the hair does not cause this, and I can continue to dye it. I am afraid it might burn my scalp because of it being so tender now. Anyway, I can't help but wonder if the irradication with deep x-ray treatments that I was given as an infant had anything to do with this since both my arthritis and now these diseases are both autoimmune diseases.

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