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ljhaze 11-10-2012 04:13 PM

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!

ladybud 11-10-2012 10:17 PM

Re: New here; Frustrated & Have Questions (DHEA-S)
Hair loss, fatigue can be symptoms of autoimmune disease. Since you have one AI disorder (Grave's), you are at increased risk for others. I would see a rheumatologist and ask to have an autoimmune workup for lupus. You might want to review the symptoms first to see how many you have, so you can provide a good history. DHEA is available as an OTC supplements in heaklth food/supplement stores. The most common side effect is oily skin/acne. The DHEA being low shouldn't account for your marked fatigue, memory issues, etc.

ljhaze 11-10-2012 10:44 PM

Re: New here; Frustrated & Have Questions (DHEA-S)
Thank you Ladybud, I will ask my doctor about it. I *believe* I've had complete blood panels done before, which I thought included checking for that, but I could easily be mistaken. I just briefly checked the symptoms of Lupus and I have many of them, however, those are also the same symptoms of FMS. Although I do also get an occasional redness of my face (the Lupus list mentions this), which I am now thinking more about. I always thought it happened when I overexert myself, but I need to pay more attention to that, since that is not an FMS symptom and I've never addressed it with a doctor. I do also get very cold extremities, but they don't turn blue as the Lupus list mentions. Regardless, I will ask my doctor about it, and see if there's more specific testing if we address it specifically.

I'd still appreciate more input, especially on low DHEA-S and taking it myself. I've been ignored for so many years by doctors when I mention concerns, that I am to the point of considering trying things on my own, but of course I do want to be safe about it.

ljhaze 11-10-2012 11:27 PM

Re: New here; Frustrated & Have Questions (DHEA-S)
I thought I'd add some of my symptoms in case it makes anyone think of anything I haven't considered:

Daily fatigue & lethargy, sometimes completely debilitating

Muscle pain and weakness

non-refreshing sleep, I could sleep forever and feel like it's not enough.

Feel my best late at night. Difficulty getting up in the morning.

get sick easily and recover very slowly. A simple cold typically lasts for weeks.

tender points as in a FMS map, and general soreness everywhere. Lightly poking my arm hurts. A massage is agony, unless it's done VERY lightly.

poor memory/poor concentration

very dry skin

legs and feet go to sleep easily, especially if I cross my legs but even without doing so.

cravings for salty food, sometimes alternating with cravings for salty and then sweet, and I don't even care for sweets.

Sometimes but not daily my hand shakes; I notice it if I'm drinking a glass of water, I see my hand trembling. This is occasional.

poor spatial perception - that is to say I easily walk into door frames or misinterpret the distance from my hand to a doorknob, etc. I often bump into things.

Very easily bruised. I've been asked by more than one doctor if I am being abused (I'm not).

Always cold

Hair loss and thinning head hair. Almost no body hair, losing eyebrows. Don't even need to shave my legs.

My face sometimes goes very flush (definitely happens if I exert myself, but sometimes it seems to appear for no reason)

tons of cognitive issues, I lose track of what I'm doing, I can't concentrate, I get confused easily, I have trouble multi-tasking, I have trouble if more than one person in a room is talking or if there is any background noise that doesn't seem to bother others.

Inability to lose weight no matter what I do.

Low DHEA-S levels

These are just off the top of my head. These are mostly daily issues, not things that happen if my TSH levels are off, I recognize those symptoms more clearly. Sometimes I just think, "maybe this is just the FMS", but my gut tells me something else is off. I wish I could get a darn doctor to pay closer attention when I bring this stuff up.

dfoulston 11-11-2012 12:33 PM

Re: New here; Frustrated & Have Questions (DHEA-S)
Hi ljhaze. I am 49 years old and just recently diagnosed with primary Addison's. I am a pharmacist and work in a hospital emergency department in Canada. Your symptoms certainly sound like they could be adrenal-related and you may well have early disease. Keep in mind that it can take many years (15 to 20) before your symptoms to become life-threatening, meaning your adrenal cortex has become almost completely non-functional (<10%).

The hair loss might well be adrenal-related. Body hair is closely associated with testosterone levels & DHEAS - very low testosterone & DHEAS levels correlate with loss of body hair. Testosterone is produced in the adrenals (in women). I don't know your age, but have you noticed any issues with sex drive (ie a complete loss of drive (libido) that can't be explained by regular aging?

If I were you, I would find myself a medical clinic that specializes in women's health and would be willing to check your hormonal levels. Ask for ACTH and testosterone levels at the very least. If the problem is occuring at the level of the adrenal, your ACTH will be high. If it is originating from the control centres in the brain (hypothalamus and pituitary), it may be low (or low-normal). If it is a pituitary-hypothalamic (central) problem, you will always have a normal response to the ACTH stim test, but your AM cortisol levels will continue to fall over time.

It pains me when the medical profession refuses to acknowledge there is such a thing as early adrenal disease or "weak" or "tired" adrenals. They KNOW it doesn't happen overnight! Addison's patient's will complain for years prior to diagnosis of feeling weak, tired & just not able to cope well with daily stressors. By the time the disease is finally diagnosed, it is usually during a crisis while hospitalized or, for those of us not so lucky, on autopsy. The deplorability of the medical management of this disease is that we generally have many years to figure it out and be prepared for potential failure. Instead, even the specialists refuse to admit that it exists! GP's will spend thousands of taxpayer dollars on diagnostic test after test and eventually decide that there is nothing at all wrong; that the patient must be "nuts!".

For more than 10 years prior to my diagnosis, I knew I had weak adrenals (I had low DHEAS, high ACTH and very low testosterone). I too had an endocrinologist (for hypothyroid) who told me there was no such thing as weak adrenals ... grrrrrr. My very supportive GP listened and heard my concerns, and even though she may not have believed me, was willing to test my cortisol level every year to ensure it hadn't dropped too low. She also tested my ACTH & testosterone every couple of years. I didn't have to wait for a crisis and hospitalization. My doc and I knew exactly what was happening as soon as my annual labs came back wonky (low sodium, high potassium, high BUN, low cortisol) and I was very quickly seen by an endocrinologist and treated (within 4 days!).

I encourage you to do this as well. Read and understand the signs & symptoms of adrenal failure - you already several. Develop a trusting relationship with a GP and ask her to check your AM cortisol level annually (must be checked before 10 AM in our lab). All the best to you.

PS. if/when you start to suddenly lose weight for no reason in particular (and can suddenly eat anything and everything you want!), and you start to feel weak and very dizzy (especially in the morning in the shower), get your lytes, BUN, cortisol labs checked and your POSTURAL BP.

ljhaze 11-11-2012 12:50 PM

Re: New here; Frustrated & Have Questions (DHEA-S)
Hi dfoulston, thank you for your in-depth reply, I appreciate it very much. I have been telling doctors for years that something is off, but they all just attribute it to the Hypothyroidism or the FMS. After reading the book on adrenal fatigue, I became more convinced that it was adrenal related. Problem is, I'm in a VERY rural area and just finding a primary physician at all was hard, never mind an open-minded one when it comes to this topic. Not sure if you saw my test results in my post above, but I will ask that the other tests you mentioned be done as well.

I am 39; it's hard to say if my libido has decreased, since I've been alone and not dating now for a couple of years, ha ha. I do know the last doctor I had mentioned Addison's, but once that jerky endocrinologist said everything was fine (despite low DHEA-S), it got blown off entirely, and that's when I switched doctors. Haven't had the chance to discuss this in any depth with the new doctor yet, only have seen her twice for other pressing issues and didn't have time to get into it. But I will push harder for these tests. Some of these you mentioned I haven't heard of, so it will be good to research them and address them with my doctor, thank you!

I find the SECOND I say "I read...." anything they start giving me that look, like I'm a hypochondriac googling my own diagnosis. I'm just trying to research potential issues, I KNOW something is off with my adrenal system. I've had both hypothryoidism since the total Thyroidectomy for Grave's Disease and the Fibromyalgia for 12 years now, I know those symptoms well and I've seen a definite change, it's something else slowly developing.

Anyway, thank you for your input!

dfoulston 11-11-2012 08:47 PM

Re: New here; Frustrated & Have Questions (DHEA-S)
Sorry ljhaze, I should explain my last paragraph. Postural BP is sitting, then standing blood pressure. High potassium, low sodium, unintentional weight loss and dizziness on standing (an exaggerated drop in BP) are cardinal symptoms of late adrenal failure.

dfoulston 11-11-2012 09:10 PM

Re: New here; Frustrated & Have Questions (DHEA-S)
Hi again lj, don't allow your doctor to make you feel stupid or crazy. Doctors are slowly accepting that patients are taking responsibility for their own health. The internet is a huge part of that. Not only is it OK to ask lots of questions and do your own research, it is absolutely necessary. Remember, there is nobody who cares as much about your health as you do.

ljhaze 11-11-2012 11:23 PM

Re: New here; Frustrated & Have Questions (DHEA-S)
[QUOTE=dfoulston;5087423]Sorry ljhaze, I should explain my last paragraph. Postural BP is sitting, then standing blood pressure. High potassium, low sodium, unintentional weight loss and dizziness on standing (an exaggerated drop in BP) are cardinal symptoms of late adrenal failure.[/QUOTE]

Oh, I did have that done, or at least the standing and sitting part. But I also suffer from severe Vertigo, so it's hard to tell 'what's from what', if that makes sense. I've had Vertigo since I was 13; could never participate in gym class, can't do carnival rides, and often just being a passenger in a car will throw me into extreme vertigo where I am in bed and vomiting for days. I always get light headed when standing up too quickly. But again, that's been since I was a kid.

I'm sure I've had my Potassium tested, don't remember the results, but nothing stood out or I'm sure they would have mentioned that. I've also suffered 3 episodes of unexplained Pancreatitis, and during those attacks my Potassium was very low. I don't drink, so I don't know why the Pancreatitis attacks have happened. I didn't even know it was part of the endocrine system until I bought an anatomy book. Again, doctors blow this off.

Definitely no unintentional weight loss, other than back in 2001 when I was diagnosed with hyperthyroidism and Grave's Disease. After the total thryoidectomy my weight returned to a healthy but thin weight, as I've always been on the thin side. UNTIL about five years ago, when I gained nearly 50 pounds. I've been able to SLOWLY get some of that off. Now I'm considered slightly overweight but look pretty average unless you saw older pics of how thin I've always been since chidlhoood, 20's and up to mid- 30's. I can't seem to lose weight now no matter how hard I try, so that seems to be one thing that doesn't fit this scenario. That may be attributed to the Hypothryoidism, I really don't know. That's another thing doctors always blow off. They just say I'm aging and it happens.

I live in a VERY rural area and finding a doctor is extremely difficult, you have to take what you can get. And none seem very open minded, so yes, I have to do as much of my own research as possible.

PS: Thanks for the hug, I don't know how to give one back...

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