Hi Ema
An ACTH stim test (urine) showed that I wasn't making enough of all of the cortisol metabolites, . The doctor told me those results meant I had adrenal fatigue.
Is it possible that you are confusing a 24 hour urine cortisol test with the ACTH stim test? A stim test is where you have blood taken, get an infusion of synthetic ACTH and then have your blood levels taken at 30, 60 and 90 minutes.
A urinary free cortisol test is not good at determining low cortisol states unfortunately. It is really only good for determining excess cortisol such as found in Cushing's syndrome. I would not trust any diagnosis of low adrenal issues as a certainty with this test personally.
Additionally I had low morning cortisol on a saliva test (although imo it seems like everyone does).
Saliva tests are one of the most accurate measures of free cortisol. Did you have the 4x/day test or just the one measure?
I would agree with you that many in the ME/CFS population have low AM cortisol but many also have swinging high/low patterns. Many people with ME/CFS have HPA axis dysfunction and problems with the circadian rhythm for sure though.
If I could go back in time I never would have started the HC to begin with, even though I do think the cytomel tired my adrenals.
I think using steroids appropriately after proper testing can be extremely valuable. However, it sounds like your practitioner may have missed some valuable testing.
One must have strong adrenals to tolerate thyroid hormone, particularly T3. However, the body may be resistant to artificially inflating metabolism using thyroid meds during times of chronic illness.
I felt much better on T3 only than T4/T3. Also the naturethroid caused my antibodies to go up. That said, I have lowered my cytomel down to only 5 mcg per day so that I am producing some of my own T4. That took a long time and a lot of acupuncture, trial and error.
What are your current thyroid labs? TSH, FT4, FT3, RT3?
I am slowly trying to wean off the HC and it seems I am now stuck at around 12.5 mg per day. I can tell my hormones are shifting as I change these things because my breasts are tender and I am spotting. My SHBG was highish on cytomel so my free sex hormones went down. I also think the HC lowered my sex hormone levels.
How long were you on HC? How long have you been weaning?
I tested positive for lyme disease. I don't know how long I have had it but probably a really long time. That is probably what sparked this whole thing. I have taken lots of ABX for that with some improvement.
That's a big clue right there that your endocrine problems may actually be due to infections, both bacterial and viral. That is exactly what happened to me.
Taking exogenous hormones can be an important part of recovery if that is the case but treating the pathogens cannot be ignored. Especially pathogens like Lyme which are well known to dysregulate the endocrine system.
Who diagnosed you with Lyme? What testing did you have? How long and with what antibiotics did you treat? Why did you stop?
What I would really like to know, though, is how to improve my immune system. Why are my immunoglobulins low and why do I produce autoantibodies (aside from genetic factors)? Is there anything I can do to change that? I would like to get my system working better. I have tried taking colostrum for the IGs but had a bad reaction. I am very careful with diet, of course.
That's the 20 million dollar question that we are all trying to address here!
There are many theories and you can spend time reading about all the possible immune modulators and treatments on the forum. Treatment will depend on numerous factors including whether or not it seems that the immune system needs stimulating or suppressing.
Have you had your total immunoglobulins including subclasses 1-4 tested? If not, I would do that first. If the total immunoglobulin level is low, there is a good chance that you could benefit from IVIG or Hizentra. This has helped me a lot.
I would also think about testing for other pathogens, specifically viral including chronic EBV, CMV, and HHV6.
You can research immune modulators such as Nexavir (which also kills viruses) and Equilabrant, Inosine/Immunovir.
Have you tried a PRP spray instead of the full colostrum? What kind of reaction did you get?
Do you have autoimmune addison's and hashis?
I have primary immunodeficiency (low immunoglobulins) which I believe led me to be susceptible to chronic infections. I have highly positive tests to EBV, CMV, HHV6, Parvo and Lyme. I believe these infections caused a dysregulation of my endocrine system which lead to a diagnosis of adrenal insufficiency.
However, after 2.5 years on steroids and treating infections, I've just recently weaned off successfully and am not currently on steroids. I believe I did not have autoimmune Addison's (because I was able to wean successfully) but had either secondary adrenal insufficiency or HPA axis dysfunction. Time will tell though.
I have some Hashi's antibodies but my hypothyroidism was also caused in my opinion by my body turning down my metabolism due to chronic infection and endocrine dysfunction. I'm now also off thyroid meds and my free hormone levels are optimal.
Ema
Ema
