History of Adrenal Insufficiency w/ITT testing, "Normal" ACTH Stim.. Now what?
I have suffered from chronic fatigue for years. I have no quality of life and half of the time I can't get out of bed until the afternoon, and then I just make it to the chair. My husband and I split 3 years ago and I needed to get a job. After 8 months, I was fired for being absent 6 times.
In 2008, I had the ITT test and it came out that I was adrenal insufficient and hypothyroid. these findings were also replicated with the GHRH+arginine test. I took hydrocortisone and thyroid for about a year and a half and my body pain went away. I was still tired, but nowhere near where I am now. I stopped taking the steroids and then gradually just started missing my thyroid meds, until I went off of them. I live in a remote area and can no longer afford to fly thousands of miles to an endocrinologist.
I have been seeing a family practioner who refuses to give me even thyroid because he says that my case is too complicated. I also had a high dose cortrosyn stim test done. I am putting my values on here. Does anyone have any ideas? The doctor said my adrenal test is normal, but I am feeling so incredibly bad that I don't believe it is correct. Stress puts me to bed for days, and many people think I am a hypochondriac because I look fairly normal. My eyes and face are very puffy right now, and I am not receiving the help I need. ANY ideas would be helpful.
WBC Low 3.8
MCH High 33.7
Eosinophils High 8.8
Lipids- all good
Baseline cortisol- 9.2 ug/dL (with loss of job and financial stress)
ACTH- 22 pg/mL
30 min 17.7 ug/dL
60 min 18.8 ug/dL
Can I still be adrenal insufficient? I believe I am, but nobody is listening.
It sounds like you need a neuro-endo. The Arginine test showed you have low growth hormone (nothing to do with the adrenals) and the AI needs to be treated as that can be life threatening. The PCP sure, may not know much but should at least know enough to refer you - ick on the cop out. Does he/she only expect colds?
How is your sodium and potassium - those are the keys to AI. If you have abnormalities there, then that is where you get into trouble. ACTH is a clue but that test is often not done correctly and can be low due to lab handling.
I would fax your labs to a neuro-endo at a pituitary center and get an appt - find one at a university or larger hospital. The links in the health pages may help as well.
The main reason MCH level is high is due to macrocytic anaemia. Macrocytic anaemia is often caused by vitamin B12 or folic acid deficiency. Vitamin B12 deficiency causes extreme fatigue and either high or low cortisol levels. I had severe adrenal insufficiency due to severe vitamin B12 deficiency. Sounds like you need to start thyroid medication again too. That causes puffiness in the face and eyes and fatigue and stress on the adrenal glands. I have hypothyroidism as well just to add. When i'm stressed i usually sleep about 14 or 15 hours.
This is interesting. I had my B12 checked too, not thinking that it would have anything to do with adrenals. It came back at 652 (ref range 176-687) Could my body not be using the B12 that is in my blood stream? Like it isn't getting into the cells? I am so confused.
I emailed my old neuroendocrinologist in Oregon. I haven't heard back. Divorce has killed me financially and I am unable to go anywhere at the moment. I have been feeling so shaky and tired. I have absolutely no quality of life and because I look normal, nobody believes me. Just cleaning my house (which doesn't get done like it should) takes a huge, huge effort, and that is just to keep it liveable. ANY insight is good at this point. Thank you.
High MCH is most commonly due to B12 or folate deficiency but there are other causes. A good website is from Dr Kaslow. He states the causes of high MCV are the same causes of high MCH so this is a more comprehensive list of possible causes of high MCH. I'll add info from his website in regards to your other abnormal labs...
The MCV and MCH are increased in:
Megaloblastic Anemias (pernicious, folic acid deficiency, B12 deficiency)
Reticulocytosis (acute blood loss response; reticulocytes are immature cells with a relatively large size compared to a mature red blood cell)
Artifact (aplasia, myelofibrosis, hyperglycemia, cold agglutinins)
Zidovidune treatment (AIDS)
Wow! Thank you for the information. Doesn't Dr. Kaslow also treat Pyroluria? I think I may have seen his name somewhere. I am currently suffering from hypothyroidism (untreated) and also with the history of anterior pituitary problems causing my adrenal insufficiency, this makes sense. I just wish I could get some answers fast. I found out that I do also have pyroluria, but many doctors don't recognize or treat it.
A normal baseline cortisol range with a subnormal response to ACTH stimulation.
*Mild secondary adrenal insufficiency:
A low or low normal baseline cortisol range with a normal response to ACTH stimulation.
NOTE: "The Addison's Clinical Advisory Panel state that if a person is unwell, the diagnosis of adrenal insufficiency cannot be excluded by a serum cortisol level [Wass et al, 2009]. CKS therefore recommends seeking specialist advice in this situation."
Have you researched cyclical Cushings? We do have bouts of high cortisol and low cortisol, and the transition between the two is a bumpy ride. You did not mention weight gain so I am not sure. What type of problems have you had with your anterior pituitary?
Note: You can have Cushings with normal daytime values.
You can learn more on my blog:
I have done a ton of research and many tests. I fall in the "Mild secondary adrenal insufficiency" range. Low hormone levels (cortisol, dhea, etc.) but I stimulate normal on the acth stim test! My thyroid has now gone out as well and I'm hypo. After getting my thyroid back to normal levels the endo says there is nothing she can do for my low cortisol bc I stimulate fine! So she can't explain why I feel like death 24/7 and have unbearable fatigue. Do you know where can go to get some sort of help?! I'm trying to get into a specialist that does bioidentical hormones and see what he says about my levels and adrenals. I'm so sick of being told there is nothing we can do or that it must be chronic fatigue.
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