I am undergoing the paces to find out if i have addisons or something else. My am cortisol levels run around 0.7 to 1.3 mg/dL. Actually have a result from early afternoon of a 1.0. I should get the results of more test tomorrow concerning the ACTH and others. I had the 1-hour ACTH stimulation test eight months ago, but it was suppose to have been normal. I have been sick since 2003, all the signs of addisons, on two occasions i was hospitalized from what i think now was an adreanal crisis. Earlier in the year i got tired of going to the doctors, given a script and sent home to find no relief. Now, i do not have a choice. I was just diagnoised with DLBCL (lymphoma). I told the cancer doc about the low cortisol before he started the chemo, and when i felt he was not taking me seriously, i insisted that he run the cortisol level when he ran his other blood work. Sure enough he is listening now, but i am back on the merry-go-round of medical wonderland, hopng this new endo knows what he is doing and not going to waste time doing it. I hope from this site i can learn more ways of detecting if he knows his business or not. The other thing i hope to gain is those that understand what is happening with all the physical and emotional problems we have. i do not have really close friends that will listen and undersand why the doc can not give me answers.
Welcome Kasha. I hope you find this group helpful.
Hello Sharon, I think I also have secondary addison’s also. Hopefully I will have some answers soon. I recently was diagnosed with lymphoma, after being sick and in terrible pain for almost four years. A neuro and friend found that my cortisol is extremely low. Igot discussed with docs early this year a quite going, but now i don’t have a choice. My cortisol is 0.7 mg/dL and they can’t start my chemo. Also m acth is
Hi Kasha,
It sounds like you have your share of medical problems. Hang in there. I’m going to give you some information that I know you will find useful as most doctors really don’t know what they are doing as far as multi-symptom, multi-system disease goes. It sure sounds like you will need replacement hydrocortisone for awhile anyway.
A little about me. I was first diagnosed with Secondary Adrenal Insufficiency and later with biotoxin disease from mold. Normally people are mold exposed when they are in a sick building (a building that has mold in it) but mine was in my breast after a biopsy clip was left in me for five years. I was highly allergic to nickel and my belief is that it changed the chemistry in my body causing mold to grow. My biotoxin savvy doctor says it was from unsanitary conditions. It does not matter how I got it but the fact remains if you have a biotoxin disease from Lyme disease, mold exposure, pfiesteria or ciguatera (there are thousands of them) and you are a certain genotype you will not get well until you are treated with toxin binding drugs. You also have to clear the infection. I have finished my treatment with an anti-fungal drug and am continuing a course of toxin binding supplements. There are also people who present with Lymphoma who have a biotoxin disease. I can not give you medical advise but if you want you can read up on biotoxin disease at the following website.
http://www.chronicneurotoxins.com/ Information on biotoxin disease
Here’s another website you may find interesting and you may even want to get some and see if it works for you.
http://www.miraclemineral.org/ Information on a supplement that may help you.
Let me know what you think
Regards,
Sharon
Hi Sharon, thanks for the info i will take a look at the sites. Did you actually have addisons then the found the biotoxin, or did they change your diagnosis. I have had a couple of bacterial infections only one of them i think was botched some how, it was e-colia in my urine, the other was h pyloia, probably misspelled. The only thing consistant in my blood work is the low cortisol, and acth.
I have Secondary Adrenal Insufficiency and I was diagnosed with that first. My endo thought it was an infiltration disease caused by nickel but it’s infiltration by the toxins from a biotoxin disease. I was later diagnosed with biotoxin disease and had to fly to Atlanta to see a biotoxin savvy doctor. I hope this helps.