Posted by Elroy on October 21, 2005, at 0:19:10
In reply to Re: Remeron and Cortisol, posted by Tenifer on October 20, 2005, at 15:18:12
Let's see....
As to the symptoms that have persisted with Remeron, basically all of them - just at different intensities.
When this started (June 2004 severely, but maybe as early as mid 2002), I had the following symptoms rapidly develop:
1. Anxiety (quickly becoming severe)
2. A burning urethra type pain (though not prostatitis in the classical sense)
3. Severely icy cold feet (mainly) and hands (secondarily) - this symptom popped up as just noticeably cold feet in the winters of 2002 and 2003 - interestingly after the start of my mild to moderate anxiety that started in July of 2002. Also had a major cold intolerance overall. It could be 78 in the house and the air condition would come on and the cold air was like a sharp stinging pain.
4. Seemingly in opposite to #3, also developed peripheral neuropathy type of sensations in hands and feet - not any numbness, but a combined burning - tingling -stinging type of "surface pain" (while the severely icy cold type of pain seems to be a "bone deep" type of pain). Neurologists have checked out and doesn't appear to be any type of classical peripheral neuropathy (i.e., diabetic neuropathy, etc.).
5. Bouts of an itchy - rashy type of feeling that will come and go. Might last for a couple hours, might last for a day. Almost like the feeling of wearing a very itchy wool sweater next to the bare skin (I use that example as it mainly comes across the torso - though will also feel it on upper legs also at times.)
6. Abruptly became severely hypogonadal. May have been travelling down that slippery slope for a couple of years, but whatever it was that came on in June of 2004 caused it to go into overdrive. Erectile functioning and libido both wen to like from about an 8 - 9 on a 10 scale to a zero in less than a month!
7. Severe insomnia (this right from the start, hand-in-hand with the anxiety.
9. Tinnitus. Went from non existent (in May of 2004) to mild in late June, to severe by mid July (2004 dates). This was the last symptom to develop.Well, actually, several months later a mild to moderate form of depression has also set in (there should be a rule that you can't have anxiety and depression both, for crying out loud... that's just not right!). But whether it's directly related to whatever is going on or is simply due to the "downer" of the situation dragging on and on is debatable.
As to the doctors, I think that you're right in a lot of cases... but can still find individual doctors who are exceptions and who do care. Also getting the right form of specialist is very important. For an Endo, I had some negative results with my first endo - but then he was a diabetes specilist who really wasn't up to date on hypercortisolism problems (and from his office traffic, clearly got into that speciality as that's where the numbers were at). I then obtained an endo who specialized in Adrenal - Pituitary Disorders and was very well versed in hypercortisolism problems. BIG difference.... But, you know what, he was off in left field somewhere when it came to male hormone issues (TRT - testosterone replacement therapy). After messing around for a year with various individuals (including this 2nd endo) who didn't know what they were doing in that regard, I just recently went to a neighboring state to see a TRT specialist (probably the best in the US).
Anyway, with the Remeron, I noticed a slight lessening of the anxiety. Still had some higher morning levels and spikes during the day, but overall found levels less than BR (Before Remeron).
The burning urethra type of pain has been gradually receding over the last few months (even BR), so I don't know that Remeron has made a difference with it either way (???). It seems to come and go and when it's there, the intensity is much less than it was say 8 - 9 months ago.
The severely icy cold feet pains have seemed to also improved gradually - but barely - over the last few months. Main improvement has been that I don't have as many instances of the cold hands, and the cold intolerance is not as bad as it was the same time last year (I suffered hugely last winter).
Same-same with the peripheral neuropathy type pains. Very gradual improvement over last several months, even BR. Still quite noticeable so times I'm not sure.
Bouts of an itchy - rashy type of feeling seems to have improved quite a bit. Still will come and go, but less frequently and less intensity.
Hypogonadism situation has improved significantly. Expect that to be a thing of history now that I am getting onto a better TRT protocol. As TRT was gradually increased over the same time period of Remeron, hard to say if there was any positive effect, however didn't see Remeron having any negative effects on libido either.
The insomnia completely disappeared with the Remeron. Simply because that's one of Remeron's side effects, its sedating nature.
I think that the tinnitus also improved with the Remeron. Its biggest improvement came when I started on the Xanax last year. Then there was some very minor but steady improvement and then there seemed to be a little bit of a jump in the improvement after going on the Remeron. Mainly noticeable first thing in the morning - and then late at night when it is quiet.
As to the adrenal gland surgery, I'll tell ya' the truth. I am to the point of hoping that NIH determines that said tumor is causing all of these problems and that they strongly recommend surgical intervention. Just because - if nothing else - that's the simplest way out. The problem has been that to this point there simply hasn't been any specific hard data testing to show that the tumor is actually responsible for anything!
Like my endo has said, most people have "incidental tumors" that they go their whole life and never realize. They are benign fatty tissue lesions that are biologically inactive - and are "just there". And the problem is that only in a minority of cases are they able to do an "adrenal sparing surgery" (where they just remove the tumor -and a goodly portion of the adrenal gland). Usually they have to do a surgery where they remove the entire adrenal gland.
As to the similarity of the symptoms, that's the whole confusing thing with the hypercortisolism issue, is that it can manifest itself in so many ways... but from the standpoint of primary symptoms that are more GENERALLY present (from tumor caused hypercortisolism, i.e., Cushing's)....
QUOTE:
Symptoms vary, but most people have:1. Upper body obesity,
2. Rounded face (Moo face),
3, Increased fat around the neck / upper back ("buffalo hump"),
4. Thinning arms and legs
5. The skin becomes fragile and thin and bruises easily and heals poorly.
6. Purplish pink stretch marks may appear on the abdomen, thighs, buttocks, arms and breasts.
7. The bones are weakened, and routine activities such as bending, lifting or rising from a chair may lead to backaches, rib and spinal column fractures.
8. Severe fatigue,
9. Weak muscles,
10. High blood pressure
11. High blood sugar.
12. Irritability, anxiety and depression are common.
END QUOTELet's see, I have none of the first seven. Eight, well, sort of... more like mild fatigue and major lack of motivation. And then I do have number twelve. My PRIMARY symptoms are all secondary symptoms in most Cushing's patients (even with the psychological disorders, most Cushies seem to have depression rather than anxiety - though it's a close split, with many having both).
See also: http://www.duj.com/Article/Vaughan/VaughanTab6.html
http://www.endocrinology.med.ucla.edu/cushing's_syndrome.htm
So when doctors talk about possibly having pseudo cushing's where it is a psychological disorder causing the hypercortisolism by way of a dysfunctional HPA Axis - and that the adrenal gland tumor is possibly just "incidental" and not really doing anything... well, I guess all of this makes me figure I need to listen.
http://www.duj.com/Article/Vaughan/Vaughan.html
The increased utilization of abdominal ultrasound and CT scanning has led to a new classification of adrenal lesions termed the incidentally identified unsuspected adrenal mass or "incidentaloma"...I think that my current endo would simply LOVE to see it end up being the adrenal gland tumor causing this also... so he could see me get the surgical intervention, be treated and be on my merry way - and out of his hair constantly (LOL).
Also I found that my initial interpretation on things were somewhat off. I thought that if NIH recommended surgical intervention that it would be done right at that time. Actually if you choose to go with that option they bring you back in about 4 - 8 weeks and do the surgery then. I would, of course, go over the particulars with my endo and if he felt their recommendation for surgical intervention was correct, then we would look at simply doing it locally if it could be done in a quicker time span. It would come down to how quick NIH could do it as compared to the local option and how impressed I was with the local specialist (as we're talking a major metropolitan medical center I am sure they would be very good also.... but then NIH is NIH).
Anyway, if nothing else use the endo to get those tests done. Also ask about the test to check for a pheo tumor. Those are known to cause severe anxiety also. Usually are accompanied also by high BP problems... but NOT always.
RE: BTW, I have a feeling that the NIH will be recommending the removal of the tumor....
For some reason, I have that same hunch. I think that if the tumor is there that's there's just to much of a chance that it is doing something (maybe not classical cushing's or classical pheo, but something!)....
That is if the tumor is still there. I don't know if I highlighted this or not, but when the tumor was first discovered (9/04), it was 2.1 x 1.8 cm and Housefield Units were - 5 (minus five - the lower the number the better, if it's like a 12 they become nervous about being malignant and if it's like a 30 they go nutso, so minus five is very good).
Then when my endo has me do the testing to see if maybe it's a pheo tumor (it wasn't), he had a follow-up CT Scan done on it (4/05). It was now 1.8 x 1.4 cm and was down to a - 7 (minus seven) Housefield Units. That's a reduction in mass of close to 30%. And that was six months ago. Doctor was insisted that the measurements were accurate and very precise.
So maybe it was an incidental tumor (lesion) that was not a cause of the anxiety, but was created from the anxiety as a stress symptom?
Or maybe something else was going on?
http://www.jci.org/cgi/content/full/108/8/1123
Hmmm....
Elroy
PS Appreciate the prayers! Will be at NIH from 12/5 thru 12/16, so any special ones will be appreciated over that time period. If it turns out being the tumor, maybe I can have laproscopic adrenal sparing surgery that clears EVERYTHING up for a Christmas present!
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10094744&dopt=Abstract
http://www.duj.com/Article/Vaughan/Vaughan.html
http://www.vhl.org/newsletter/vhl1997/97aepheo.htm
http://cms.clevelandclinic.org/urology/body.cfm?id=146&oTopID=146
http://www.musc.edu/catalyst/archive/1998/co5-29laparoscopic.htm
poster:Elroy
thread:124535
URL: http://www.dr-bob.org/babble/20051017/msgs/569694.html