Help!

[Stellabianca]

Hello, I'm writing this because I am at my wits end trying to feel better. Here is my background...I was diagnosed with graves disease in 2002. My drs had a very hard time treating it and ever making me feel better. RAI treatment was suggested to me because they thought I could be better treated as hypo. In 2006 I had RAI and shortly thereafter became hypo. Since then it seems I have been on a steady downward spiral as far as feeling well goes. I have spent the last few years in a state of fatigue that has now caused me to be unable to work or do much of anything. I have been told that Im depressed, have fibromyalgia and/or chronic fatigue syndrome, PCOS, ibs, ic, and metabolic syndrome. My latest labs show that my thyroid levels were very low and so was my vitamin D levels, however even when my tests are "normal", I still feel extremely tired and achy and just generally not well. I recently sought help from an acupuncturist, as I have seen numerous drs from all sorts of backgrounds and specialties in the 5 years this has become worse. He told me after some prodding that he thinks I might have adrenal fatigue. I went home and did a ton of research and to say I am confused would be an understatement. Here is my dilemma with his diagnosis: I am severly fatigued, but once had my cortisol levels checked and it was normal. There was suspicion that it was high because I am shaped like a bowling ball with arms and legs and a slight bump on the back of my neck. I have read some articles that say you can have adrenal fatigue with high cortisol levels, but more say that cortisol eventually becomes low in af progression.
Does anyone have any idea what may be wrong with me?? I am currently taking naturethroid 3 grains a day since my latest labs were low. It has been two weeks and I still do not see any change in my energy levels. Is it suggested to get a full adrenal work up to figure out if that is the problem? Can a person have symptoms of high cortisol and still be extremely fatigued? Can a person stay in the initial high cortisol stage of af for 5 years?
Please help, I have spent so long feeling awful and it has truly wrecked my life. I feel like there is no hope for finding just what is wrong with me and I want to be able to have a life again! Thanks

[upbeat63333]

I agree with rumpled, you need to see a specialist, that is usually an endocrinologist.

But, even then, don't let your guard down. Do as much research as possible. Tests for cortisol, and other hormones, need to be done at certain times of the day to provide the best information. And ideally, the test(s) should be repeated.

Like rumpled, I had some normal tests, some low normal, some mildly high. This was over many months and included all the tests for cortisol,  24hr urine, suppression tests, 8am serum test, ACTH, and midnight salivary swab test. I did not let them get by with just one. That might be harder to push for if your first test comes up normal, but if your symptoms suggest otherwise, fight for more.

Oh, ya, and supplement with vitamin D. Are you anemic too?

[rumpled]

If you are shaped like a bowling ball and have a "buffalo hump" (sadly, that is the medical term for it) then you should probably test for Cushing's syndrome which is too much cortisol.

Both too much and too little cortisol cause fatigue and high cortisol messes with your thyroid as well as your vitamin d and many other things.

You can have one or more normal cortisol tests. What time was the test? What type of test was it? What lab? You see, cortisol normally is highest in the morning and goes down in the night - a change in that is a loss of diurnal rhythm and that is usually Cushing's syndrome. Point in time tests should be done at times that are diagnostic like 8am or midnight - be it blood or saliva. Urine tests are good too but sometimes the average can just be deceptive. I was high at night but so low during the day my average was normal. I was sick for 12 years before I was diagnosed and I know others that were sick a lot longer. I just met someone that thinks she has been sick 30 years.

It takes a specialist to test accurately and well.