Trying to understand labs and fatigue
Hi there,
I am new to the forum and seeking general advice, support, and info on labwork. I have been exhausted for a number of years now and it keeps getting worse. It's gotten to the point now that I have had to think about leaving my job as a law professor (I have already left my career as an attorney behind) and doing... I don't know what. I can barely make it out of bed every day and think coherently about my work. I have to depend on my mind in order to do my job, but virtually all month it is so fuzzy that I cannot think clearly any more.
Here are things I know are wrong:
--I have Hashimoto's thyroiditis (diagnosed in 2009), but have not treated it for the last 4 years because labs are "normal."
--My ANA is always off the charts (meaning, it's the place where they stop titering, or 1:2560), so there is definitely something autoimmune going on with me. I was recently diagnosed with Lupus, but this was a diagnosis of exclusion rather than a diagnosis based on the presence of any particular antibodies, so I am kind of suspicious that it isn't quite right. To me, adrenal exhaustion seems more like it.
--Twice in the last 4 years I have had doctors prescribe some T3-containing treatment because they thought it would help, only to have me react very very poorly, which caused them to recommend that I stop treatment due to the side effects (intense muscle pain, heart going out of control, etc.). I understand that patients with low cortisol often don't respond well to T3-containing medicines until they get their cortisol levels up, so I recently ordered a saliva test to check my levels. That should be in later this week.
--I started having trouble with my eyes shuddering (for lack of a better term) in the sun. It was like my pupils were contracting and expanding rapidly. I stumbled across this perhaps being related to aldosterone and saw that I could do a "pupil" test to see if I had some sort of adrenal deficiency, and sure enough, my pupils contracted slightly and then got bigger.
--I had my aldosterone tested and it was 2.4 ng/dl. The lab range was 0-30, but I tested it at 8:30 a.m. (which was as early as the lab opened, as I understood levels were highest in the morning) sitting up, and I have seen other ranges say that anything lower than 4 is low if you're upright, so I suspect that the levels at other points in the day are clinically low if it's at 2.4 at the "best" time.
--When they did the aldosterone, my "alkaline phosphatase S" levels were low, and I have no idea what those are.
-- I have something called vasovagal syncope, which causes me to faint, unexpectedly. It can be caused by neural or cardio causes, and I've never had mine figured out. It happens only occasionally, and tends to happen in spurts. Lately it has started happening in particular when I am lying down, which is an odd feeling, to faint while lying down. It only lasts a minute or so because my adrenaline (or something) kicks in when I feel myself spinning down into darkness, and I immediately wake up, but am winded for a day or so after it happens. I suspect that my VVS may have something to do with the low blood pressure I often have, or the wide variations in pressure that I have sometimes (it has gone from 95/55 to 130/90 in just a few minutes). I understand that low blood volume can cause it, which I gather is also an effect (or has some relationship to) low adrenals?
--My iron levels tend to be low. The last tests I had were 19 ng/mL ferritin (with a lab range of 5-204, but I've read that an ideal range for most with adrenal problems is around 70) and the % Satur. Fe is 19% (with a range of 12-57). This is while taking iron supplements, as I have been borderline anemic for years.
--There are often other slightly low blood numbers. The last were RBC 3.86 M/CMM (range 4.2-5.0); Hgb 11.7 g/dL (range 12-16), and Hct 35.8% (range 36-48).
-- I was diagnosed with interstitial cystitis in 2007, but have been in remission for about 5 years. I have to wake up and go to the bathroom 4-5 times every night, but I understand this could also be related to low aldosterone?
--I've lost about 75% of my hair, but I can deal with that. I just mention it because it's another symptom that seems meaningful at the level I've experienced it at.
-- I'm also always cold, even when others are very hot (I live in Texas too), and have heart palpitations (or what seem to me to be just "out of order" beats-- it's like it speeds up and slows down really fast sometimes).
I am still waiting on results from the cortisol test, but I am wondering whether it makes sense to take the aldosterone labs to my endocrinologist, and if so, what to ask her to look for. She is generally very dismissive of anything that is flagged on the labwork but is "close enough," and the lab I used said my 2.4 aldosterone was within range since theirs was 0-30.
I know that stress plays a role in whatever it is I am experiencing, and I have been through quite a bit of it. I am a mother of two small children and lived for 15 years with a suicidal spouse who, 4 years ago, ended his life. I'm sure my cortisol levels were raised constantly during that time, and bringing up two small children alone has not been easy, especially as a lawyer. I have left the partnership track and am now considering leaving the tenure track as a professor, simply due to the fact that I cannot keep up in my current state. I desperately want to feel like myself again, though, so any help at all that anyone could provide in terms of how to arm myself for my next doctor's appointment or what other labs I should try to do on my own would be much appreciated.
Thanks in advance to you all!