Just got new saliva test results.
6-8am 13 (13-24)
11-1pm 6 (5-10)
4-5pm 3 (3-8)
10-midnight 3 (1-4)
I"m currently taking 10mg Cortef. I know that's probably too low. How much should I be taking to get my morning level up to at least 20? I think that's the key to my thyroid and hormone imbalances. My estrogen is now too high because my cortisol is too low.
Was that testing ON the replacement? It shows a normal diurnal or ciradian rhythm. Are you primary or secondary? What is your ACTH? Are you taking florinef to help regulate your sodium and potassium? What does your endo say? Do you do urine and serum blood testing too?
While cortisol does impact other hormones - it does not *become* other hormones - it is not a precursor hormone to estrogen or thyroid as far as I know. High cortisol can lower TSH and suppress testosterone though that I know (I had Cushing's). Have they done testing on the other hormone loops to determine where the issue is?
No, I was off the cortef for 2 weeks prior to testing. Yes, it shows a normal rhythm, but the morning levels are WAY too low. Optimal cortisol levels for morning should be at the upper end of the range so a person has energy to get out of bed. I have no idea if I'm primary or secondary and I've never had an ACTH test. I refuse to see endos because they have no training in adrenal fatigue. I've seen 6 endos and they all ruined my health and admitted they're not educated on adrenals. I did have a 24 hour urine test, but don't have the results yet. Blood testing for cortisol isn't accurate. I'm not testing for Cushings or Addison's, I'm testing for adrenal fatigue.
I've read in many articles that high cortisol affects estrogen and, while it doesn't covert into estrogen, it can raise those levels. I've seen 23 doctors over the past 5 years and it's been determined that I have severe hormone imbalances but no one knows what's causing it and so far I haven't found a doctor who's educated enough about hormones to help me. I've had 2 MRI's and I have no tumors, but I do have hypopituitarism. I've had low hormone levels and symptoms of hypothyroidism since I was a teenager.
Ah. I don't follow or believe in the adrenal fatigue school. Sorry.
The only docs that treat endocrine are the endocrinologists and totally agree - lots of duds out there. I have had better luck with neuro-endos but even some of them are stuck in the past. I disagree on the blood testing. Serum testing is very accurate. While you are researching look up cortisol binding globulin - free cortisol is effected by that and people can have naturally high levels or medications can raise it. Free cortisol (urine and saliva) is effected by CBG.
If you are hypopit - why are you not at a pituitary center? It does take a while to find a decent neuro-endo... it took me a long time and I travel to mine - any attempt at a closer one has been a disaster - one doc told me my super high ACTH was not my tumor remnants but because my adrenals were out but finally he had to acknowledge that people with no adrenals had ACTH readings of 300-600 not like mine of 3000-4000 - but he was no help. I have seen tons of docs - lost count.
Did you get MRIs read by surgeons? You can send it to expert here. Tumors can be missed.
Sorry you don't believe in adrenal fatigue, but it's a very real health issue. There's a lot of grey area between Cushings and Addison's. Those are just the extremes people get to when they're not treated properly before they get so bad off. Just because it's not taught in med school doesn't mean it doesn't exist. I have a real allergy to cellulose. It causes my airways to tighten up. No doc believes me because there's no test for it and it's not written anywhere, but if you give me anything with cellulose in it, I'll start coughing and choking within minutes.
Blood testing is accurate for some things, but not for all. It's not accurate for testing estrogen, progesterone or cortisol. Blood only gives you the bound, not the free or "active" amounts in your body that are actually in the cells and doing their job. I've had several docs tell me they think my meds are floating around in my blood, and showing up in labs, but not getting into my cells to do any work.
I went to a pit center and the lady told me I'm not hypothyroid because my TSH isn't 10 or above (she said she won't even put people on thyroid meds until their TSH is 10 or higher). I told her I'd be dead by then. I actually remembered she did an ACTH test on me, but it wasn't done correctly. She did it at 11am and I wasn't fasting. Even the lab sheet said it has to be done between 7-9am and fasting. The second number increased a little, but it didn't double like I've read it should. Her diagnosis was sleep apnea. I said really? Is a person born with sleep apnea because I've had hormone imbalances and hypothyroid symptoms since I was a teenager.
I think a radiologist read my MRI's. Where can I send them to on this board? Is it a forum or an email? Does he/she charge to look at the x-rays?
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