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robinlynn5's Message Board Messages

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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.

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.

Dear Bezneez,

What a heartbreaking story. I've thought about your situation for a few minutes now.  What's happened in the past is history. If you stay angry, bitter, and 'blame',  it is you who will rob the rest of your life for any chance of happiness and peace. Having no idea what your cultural or religious background is, I decided this 15 min video by Deepak Chopra has a reasonable chance for seeing your life differently - in a positive, peaceful way.  It could be the catalyst for having a happier life from this time forward.  I wish you much success with it.  https://www.youtube.com/watch?v=XSNpGyG2jSw

Unless you're the type who considersonlywhat is traditional

On Aug 22, 2017 6:50 AM Usedtobe1 wrote:

I just saw this message board. I'm a 71 year-old male born in September of 1945 in Springfield, Mo., with an enlarged Thymus gland. I was over a 9 pound baby and evidently would turn blue when trying to eat and was losing weight. My family was about to charter a flight to St Louis for me when they were told of a similar case being resolved with radiation. Bottom line, I was lit up like a Christmas tree for 2-3 radiation treatments before I was 2 weeks old. I grew up without many health issues. I was athletic and very active throughout my life. In April of '16 I was diagnosed with a Klatskin's Tumor (bile duct cancer) which is a form of cholangiocarcinoma. It's a very rare form of cancer and one of the causes is people who received radiation before 1950. I've chosen to believe early radiation was my cancer trigger. I'm not bitter. I look it as I would likely have died as an infant without the radiation. I may have lost a few years on the back end but I have a great wife, 3 kids, and 4 grandsons. I've had a good life I was given 12 months to live 16 months ago. I haven't gotten cheated. I'm lucky enough to live in Houston and get treated at MD Anderson. I'm also stronger today than I was a year ago.

Unless you're the type who considers what is traditional,  please don't solely rely on what mainstream doctors tell you.  www.cancertutor.com and https://thetruthaboutcancer.com/.

I'm so sorry you've gone thru all this. I also had 3 treatments in late 1951 as an infant, haven't experienced what you have.

On Apr 11, 2017 3:53 AM singe wrote:

childhood x-ray exposure- in 1947 at the age of 2 months I was given x-ray treatments to shrink my supposed enlarged thymus. My grandmother had lost two children in the early 20th century to respiratory diseases (pneumonia, flu, etc. who knows?) and so when she perceived me to be breathing funny off her and my mom went to some quack who zapped me. I was unaware of this until at age 42 I had a high calcium level on a blood test and my parents told me about the treatments (they did not want me to worry so they never told me about them). After some scary times a radiologist at Cornell Medical in NYC found a benign parathyroid tumor 4 cm long by 1 cm thick under my left clavicle. It was removed and i have been seeing an endocrinologist every 6 months for the past 25 years. So far all is well and he does have me taking thyroid replacement pills as he feels chilling out my thyroid decreases the chances i will delvelope nodules. I do not have all the information you are looking for about how many treatments i was given.

I'm glad for the most part, you haven't experienced any serious problems. My endo told me that at my age now (65), I'm not likely to develop a thyroid tumor but I do routinely have it checked once a yr. Have you experienced obesity during your life?  If yes, were any of your parents or grandparents significantly overweight?

For all of you who have had cancer or do now, I cannot recommend enough:

thetruthaboutcancer.com

https://www.youtube.com/user/ thetruthaboutcancer

I say this having never had a cancer diagnosis, however loved ones have.  If you have cancer, had cancer, concerned about getting it, you owe it to yourself to watch the Truth About Cancer series.  You can find most episodes of it on Youtube, plus other interested videos by the Truth About Cancer people: https://www.youtube.com/user/thetruthaboutcancer

You'll meet many cancer survivors, some including the physicians themselves who did not go the chemo/radiation route, although some did initially with poor results.  You owe it to yourself.  BTW the early recommendation about cannibis oil is a good one.

If the day comes when I receive a cancer diagnosis, I will follow the suggestions in these series.  My brother suffered with side effects of chemo terribly, and finally his immune system was destroyed from it and he died from what, for anyone else, would have been a common & treatable respiratory infection.

I found this article which might be of interest to all participants in this thread:

Ending of the Era of Radiation Therapy for Enlarged Thymus

at http://www.ratical.org/radiation/CNR/PBC/chp11F.html

It's unbelievable that you are still alive and what you've been through.  I consider you a miracle.  Your positive attitude is also extraordinary.  You have no anger what the doctors did to you and that they did so without informing your parents?  Do you believe there may be some truth in that doctors knew all infants have enlarged thymus glands and that the radiation was covertly researching for SIDS?  You mentioned your doctor found you were on a 'list'.  I think all or most of here would like to know more about this list.  Can you provide any information about it?

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