Hi Debbie,
Sorry in advance for the length of this post!!
I agree with everything the others here have said and am truly sorry to hear that you're suffering. There are aspects of what you've described that certainly sound suggestive of AI. I would strongly suggest the low-dose stim test as well (unless your previous results -starting cortisol level- bring something to light). The ME could be an accompaniment to AD, or could simply be a manifestation of it.
I had 4 stim tests before I was diagnosed! Although I wouldn't wish the experience on my worst enemy, I did learn about all of the things that can adversely affect the outcome of that test (cloud the results). Here goes:
During the first one, I'd been taking birth control pills (estrogen), had a radioactive injection (for a CT scan), and a complete bowel prep (for a colonoscopy) the night before. I was also severely hypothyroid. All of these factors can artificially elevate cortisol levels. Additionally, the test itself was given improperly. So my results looked "normal" even though the extra ACTH sent me into crisis. I crashed 2 hours later, when I was put under twilight anesthesia for the colonoscopy, and the docs were dumbfounded. I'd presented to the ER in complete crisis a few days earlier. Despite my labs, which showed high Ca/eosinophils, high K, low Na/osmolality, complete metabolic acidosis, etc (and the fact that I'd collapsed and was completely incoherent) I was told that I'd had a panic attack.
The other symptoms, including what you've describe, were present. I was orange and had lost 20 lbs, was peeing like a racehorse even on a fluid restriction, had major orthostatic problems and so much pain. But I was discharged with no diagnoses except possible Celiac, what they thought was diabetes insipidus, and depression. I went back with acute pancreatitis (presumably from high Ca from Addison's) which was missed despite my labs, and had a heart attack which was also overlooked (yes, this is true) once the docs saw the previous discharge summary stating depression/anxiety as a possible diagnosis.
The second stim test should have been diagnostic (started at 6 and stimmed to 15) but the attending didn't consult with an endo despite my request, and I was discharged again with no diagnosis except anemia. I have learned since then that in a small person (I am 95lbs) the standard 250mg test results can be misleading because our bodies would NEVER produce that much ACTH at one time.
The third test was abandoned prematurely because I started going into crisis, and the fourth was given the following morning after a stress dose of Dex - but my endo said that one was "void" because my adrenals had been "primed" the day before. So the diagnosis was actually made in retrospect, although I'd been asking my docs about Addison's for months. Like so many others on this site, I learned to be my own advocate. All of the tests that have confirmed all of my other diagnoses are ones that I've demanded. It's unbelieveable how many obvious things can be missed by doctors.
I found this list (below) of symptoms as reported on a 1997 survey of Addison's patients. From my limited understanding of ME, it seems like many of the symptoms are the same. You're probably already familiar with it since it was performed in the UK, but just in case...here's the link to the full survey:
http://www.addisons-network.co.uk/ad_survey_final_report.htmlSign or symptom:
1 Fatigue 93.9%
2 Abdominal pain/'stomach ache' 93.0%
3 Muscle pain 92.0%
4 Painful feet 88.0%
5 Extra sleep requirement 87.0%
6 Exercise intolerance 83.5%
7 Leg cramps 83.0%
8 Postural hypotension 83.0%
9 Lack of concentration 81.4%
10 'Thinking through fog' 79.6%
11 Loss of appetite 78.8%
12 Nausea 77.8%
13 Body weight loss 77.8%
14 Slow recovery (illness, etc.) 76.0%
15 Irritability 75.2%
16 Stress intolerance 74.5%
17 Thin dry skin 73.4%
18 Inappropriate tanning 72.9%
19 Salt craving 72.7%
20 Diarrhoea or loose stools 72.5%
21 Hypoglycaemic attacks 72.4%
22 Loss of libido 71.8%
23 Poor memory 71.4%
24 Loss of balance 70.4%
25 Mood swings 70.2%
26 Headaches/migraines 66.3%
27 Temperature intolerance 66.3%
28 Disorientation 66.3%
29 Insomnia 66.0%
30 Muscular spasms or 'twitches' 66.0%
31 Hypotension 65.2%
32 Anxiety 64.6%
33 Prone to infections 64.3%
34 Excessive flatus 59.2%
35 Tingling skin/'pins & needles' 59.2%
36 Increased/excessive thirst 58.6%**
37 Vomiting 58.6%
38 Light sensitivity/night blindness 58.2%
39 Constipation 58.1%
40 Brittle nails 56.3%
41 Dry nose/mouth 56.1%
42 Night sweats 55.1%
43 Tinnitus 54.1%
44 Dry/stinging eyes 52.5%
45 Palpitations 52.5%
46 Loss of body hair 50.5%
47 Visual 'after-images' 48.5%
48 Excessive sweating 48.0%
49 Indigestion/'heartburn' 48.0%
50 Thin dry wispy air 44.9%
51 Irregular periods § 44.3%
52 Poor grip 42.9%
53 Startle reflex 42.4%
54 Spontaneous/easy bruising 41.4%
55 Increased no. motions*** 40.3%
56 Tachycardia 39.8%
57 Numb patches skin/muscle 37.1%
58 Prone to joint/muscle injury 30.2%
59 Fluid retention 22.4%
60 Herpes zoster infection 21.0%††
61 'Hives' 20.6%
62 Bradycardia 20.4%
63 Hypertension 13.4%
64 Body weight gain 11.1%
65 Body weight static 11.1%
66 EB virus infection 10.8%††
67 Cholecystectomy 8.0%
68 Joint pain 8.0%
Hope your endo is willing to work with you, and if not, that you can find another one quickly! Best wishes to you...
Take care,
Leigh
