Join Date: Nov 2012
Location: New Hampshire, USA
New here; Frustrated & Have Questions (DHEA-S)
I'm new here, hello. Here's a brief health history that might be relevant and then some questions. If anyone could offer suggestions, I'd be most appreciative.
I was diagnosed with Grave's Disease/hyperthyroidism and Fibromyalgia both in 2001. In 2001 I had a total thyroidectomy and was put on Synthroid, now of course having Hypothyroidism as a result of no thyroid gland. Doses have varied over the years, I'm currently on 175mcg, just reduced from 200 mcg this month, which seemed odd, because I tend to go Hypo, not Hyper. I have never had any significant treatment for the Fibromyalgia, although I've tried acupuncture, supplements, massage, B12 injections, etc. The FMS (or FM if you prefer) is pretty bad and I am completely disabled as a result.
Over the last few years, I've noticed several things. Some more recent, other symptoms longer: My hair is MUCH thinner than it used to be, shockingly thinner. I have very dry skin. I have gained weight and have extreme difficulty taking it off even though I do not over or under eat. I feel fatigue and weakness every day. I have major sleep problems, I seem to be at my best around 1:00am, fall asleep around 5:00am, but then will sleep half of the next day, having to drag myself out of bed and I won't regain energy until mid evening.
Okay, so lately I've been wondering if there's more to this than the Hypothryoidism and Fibromyalgia. My former Acupuncturist, who is also a former MD once mentioned that I sound like I have Adrenal Insufficiency and that should talk to my doctor about it. I tried, but my doctor at that time laughed and refused. A couple years later I bought a book on Adrenal Fatigue, a topic which from my understanding seems to be very controversial. Apparently many doctors say there is no such thing. But this book fit me to a T. So much so that I spoke to my new doctor about it. He tested my Cortisol, which came back normal. A side note here, and maybe I'm crazy, but I was told to arrive for the Cortisol test at 7:00am, and I quote "because that's when your body is at it's best". I said that is not at all when my body is at its' best, that I am NEVER awake at 7:00, I've usually only been asleep a couple of hours at that point, and that I'm at my best between 11pm -1am. They ignored me and said that is standard protocol and tested my Cortisol at 7:00am anyway.
I then spoke to my doctor about the results, questioning whether it could really be normal, if there may be more to it, etc. I explained that in addition to my now very thin hair, I am also losing my eyebrow hair to the point where I have to shade them in, and have almost no leg or armpit hair. Then I elaborated about my fatigue, inability to lose weight, and other symptoms that from what I have read, can indicate an adrenal problem. Oh, ironically I almost forgot to mention memory loss! That's been a huge one for me lately.
He sent me to an Endocrinologist. I must say, I did not care for him one bit, he was sarcastic, said he was confused about why I was even there, that he doesn't treat the entire endocrine system, only the Thyroid. Having no thyroid, I felt I was at the wrong doctor, but I was already there and he is literally the only one in my remote area, so I proceeded with tests.
He seemed annoyed when I questioned the time of day that my Cortisol was tested, but said he would do a "Stimulated Cortisol" test, which he did. The problem is, he used the original Cortisol results as a baseline! So if my theory that the Cortisol was tested at the wrong time of day is at all right, then the stimulated test results would be off as well.
Anyway, I received an almost rude, but matter of fact letter from him a week later. I won't transcribe it all here, but here are the numbers (this was before the recent Synthroid dosage decrease by the way, this was from last winter):
TSH 1.400 uIU/mL REF 0.3258-3.740
Free T4 1.20 ng/dL REF 0.76-1.46
Total T3 127 ng/gL REF 70-190
Cortisol, Stimulated 37.50mcg/dL REF >18
DHEA Sulfate [L] 27mcg/dL REF 40-325
He goes on to say that my thyroid levels, TSH, T4 & T3 are all mid-normal and that I definitely do not have any thyroid dysfunction.
He says my stimulated cortisol level is 37, well above the threshold to rule out adrenal insufficiency (but again, I question this, based on the baseline Cortisol test originally taken at 7:00am), and he then says I "absolutely do not have any adrenal insufficiency".
He then says my DHEA-S is low and the reason for this is uncertain. He says it may be the reason for my lack/diminished body hair. He mentions this can be part of the aging process (I'm 39, although this has been going on for years) and has also been hypothesized to be related to depression. (I did suffer Depression for many years, but not in the last 10 years).
He says to his knowledge, there are no credible studies that show replacing DHEA-S has any clinical benefit.
He sums it up by saying the only reasons for a low DHEA-S would be 1) hyperandrogenism, which he states is clearly not the case with me, or 2) diagnosing ADRENAL INSUFFICIENCY (hello!) when the cortisol testing is ambiguous, which he says was not the case. (I disagree).
His last sentence is that he has no recommendations for further testing or treatment. My primary doctor never followed up with me regarding these findings, and I had already been frustrated with my primary, so I switched doctors. My new doctor seems very old school, and when I mentioned my Fibromyalgia on my first visit, she told me to take an anti-depressant. This was discouraging because while I have heard of some benefits of this, I was hoping for something a little more pro-active in managing my FMS. So I haven't even dared approach the Adrenal Insufficiency issue with her yet.
I am finding it very difficult to get a doctor to take a serious look at this. I tried reading up on supplementing DHEA-S on my own, but articles I've read cautions side effects, increased problems, etc. Although other articles say it has quickly returned women to normal levels and greatly reduced their symptoms.
I apologize that this was so long. Does anyone have any opinions as to my theory of the Cortisol test being taken at a time when I personally think is the worst possible time for my body? What about DHEA-S supplements? Do they work for anyone? Is this something I can purchase and try on my own or too risky?
I KNOW there is something more going on, and none of my doctors seem open to the topic. Any opinions or suggestions would be very much appreciated. Thank you!