Re: Cushing's -test results-Medical Prof. advice requested please!!!!!!
From: anonymous (anonymous@obgyn.net)
Fri, 6 Sep 2002 11:33:45 -0500 (CDT)
Lindsay,
I have a some of the very same symptoms you describe. I too have been
tested for Cushing's. That's not it.
I have PCOS and insulin resistance.
Recently, my arms started aching, from the elbow down and my legs from
the knee down. This can been a symptom of a Thyroid disorder. My
thyroid is enlarged, and my test results are all normal. We are still
waiting for the results of another test for thyroid antibodies. This
will tell whether or not your immume system is attacking your thyroid.
You may want to have your doctor check you for it...it isn't a test that
is normally run.
At Tue, 3 Sep 2002, Lindsey wrote:
>
>I finally got my doctor to do a serum cortisol level. They called me
>and said it was normal-8.9. Should I go on to ask for more testing? And
>what testing should I ask for? Is there any correlation that anyone else
>can see with my diagnoses/symptoms that maybe I am not aware of? My
>diagnoses: PCOS- aldactone, 200mg/day. Perimenopausal- HRT. High BP-
>propranolol, High cholesterol-lipitor, chronic
>pain/depression-amitriptyline, resltless leg syndrome- klonopin. My
>symptoms: General fatigue, lower limb muscle weakness/fatigue, body
>aches, (it alsmost feels as if all the blood has been drained from my
>body I am so fatigued) buffalo hump (really hate this the most! Does it
>go away with treatment?), only a couple of purple striae on stomach,
>pendulous stomach, excessive hair growth on face/body, T3/T4/TSH results
>were normal a year or two ago, roundish face, weight gain though intake
>is low, unable to find energy to get through day sometimes let alone
>exercise, profuse sweating, shortness of breath at times, peripheral
>neuropathy (hereditary-not due to diabetes), trouble concentrating and
>memory. Medical history below. ANY thoughts or advice very, very
>welcomed.
>
>My name is Lindsey and I was diagnosed as having PCOS when I was 17 yrs
>old. The treatment was birth control pills. No problem. When I
>graduated from college I started to have weight gain for no known
>reason. Things have just totally escalated from there and now I have a
>strong suspicion that I may also have Cushing's Disease/Syndrome as
>well. And yes, this whole thing has been a nightmare and can so very
>much commiserate with everyone.
>
>At the ripe old age of 33, I am falling apart physically. I have high
>cholesterol, blood pressure, weight gain in places I have never had
>before (neck, back, lower abdomen), muscle weakness, fatigue, poor
>memory, am irritable, moody, and have a hard time concentrating. My
>decline started when I moved to AZ in 1994 (when I graduated from
>college). A picture from then, where I was the heaviest I had ever
>been- 155 lbs- you would not know that person is me-I look GREAT! Wish I
>could have appreciated it back then. I have just gained more weight
>since then (due to the fatigue and muscle aches) and now weigh 244 lbs.
>And it is not all due to what I eat either like the doctors like to
>always think. People cannot understand how I could weight this much
>when I eat so little. If the doctors would take care of my problem with
>fatigue, weakness and excessive sweating, well then I would be more than
>happy to start exercising again! I use to really enjoy it and do miss it
>and how good it made me feel.
>
>The weight just kept coming in strange places the fatigue got
>increasingly bad,and then I started my "hot flashes" that we all laughed
>about as absurd since I was only 27 yrs old-theyjust kept getting worse.
>I started going to see doctor after doctor telling them what was
>happening to me and all they ever did was check my thyroid and tell me
>to exercise more and loose weight. Not ONE doctor ever took the time to
>check my hormone levels and I had been to Endos's, Gyno's, Internal
>Med's and got nothing. It took me having a total break down and
>becoming suicidal for me to finally receive any kind of help-and the
>help I got was unbelievable! I called facility after facility since I
>really did not want to kill myself but just could not go on anymore like
>I had been. I had it all planned out. ALL the facilities I called had
>a two week waiting time for an appointment! Can you believe it! Told
>them to not bother if that was the case, as I would no longer be here
>for the appointment! I finally remembered my boss had a psychiatrist he
>went to and since I figured if he was good enough for my boss who was an
>MD.... so I called him...he was the ONLY one who even attempted to help
>me and got me in in two days.
>
>There is a strong history of depression in my family-my dad is manic
>depressive and I believe my mother was chronic depressive-and I had been
>depressed at various periods of my life. He was so sure that I just
>needed the right med and I would be "dancing on the tables again." I
>went through a year of having to pay for private consultations with this
>psychiatrist until I finally ran out of patience and told him that he
>had better have a really good reason for me to hang around as I was not
>doing any "dancing on tables or otherwise" or I was done with it all and
>was going to check out- permanently. That was the end for me-I was done
>feeling like shit, tired, depressed, unhappy-God I was so unhappy. For
>some reason he decided to have my hormones checked-I had already had my
>thyroid checked so many times I could not even tell you. Guess what? He
>called me on my thirty-first birthday to tell me that I had the absolute
>minimum of every hormone a woman my age should have! He said he could
>not believe that I had not killed myself or anyone else when he saw the
>results. So happy birthday to me! I am in premature menopause! It only
>took 4 years to finally get somewhere. So there was my morsel of hope.
>Unfortunately, it was a bittersweet morsel as I have never been married
>and had, just within that last year, started to want to have a child.
>That dream was pretty much gone with this diagnosis and I went through a
>great deal of grieving because of this. For someone like me who always
>felt odd and like I did not fit in, this just made the feelings so much
>worse and I now felt totally isolate. It also was/is very hard dating
>as many men did not want to have to deal with the thought of never
>having kids or having to go through serious medial intervention for only
>a possible chance of having them.
>
>So, started going to a female doctor who specializes in women problems
>and hormones. Did this for about a year and was not happy with the
>results-did not seem to be making as much progress with my symptoms
>being alleviated as I felt they should. She blamed it on the
>psychiatrist, he blamed on her not giving me enough estrogen. See I was
>having these absolute awful profuse sweating episodes. The sweat was so
>heavy that it would saturate my hair and run off it. I could not
>control it and the embarrassment and anxiety it cause made it even
>worse. I mean, what patient is going to want a nurse working on them
>when sweat is pouring down her face and hair on them? Yuck! Needless to
>say, I find my clinicals very stressful. Finally found on the internet
>that SSRI's can have the effect of profuse sweating! There were a bunch
>of people who had experienced the same thing as me out there but I had
>to diagnose myself after spending all this money on doctors (I had no
>insurance and the bills had gotten so high that I had to declare chapter
>7 bankruptcy last year). So I stopped the Effexor SR I had been on.
>
>So okay, I had in December of 2001 decided to finally go to Nursing
>school. There is a hereditary form of peripheral neuropathy that runs
>in my family but I figured that since it had not been a problem yet and
>I had waitressed and all that, that I was probably going to be okay.
>Wrong!! Within a month of starting clinicals my feet went numb. I kept
>trying to ignore it and was telling myself that it was just a pinched
>nerve and would go away in a bit. Well it didn't and it got much worse.
>The only way I can describe the pain is the feeling you get when you
>place dry ice on your skin for a period of time. It is so cold that it
>burns. Getting up in the morning is the worse as it feels like you are
>walking on stumps instead of feet they hurt so bad. I did some research
>about the disease and found the meds that were currently being used and
>went to my doctor. He was very accommodating and prescribed an older
>tricyclic antidepressant that is used for chronic pain-we thought we
>might be able to do a double whammy-treat the pain and the depression.
>So I started to wean myself off the SSRI's to see if I had finally found
>the cure for the sweats. Unfortunately it has not been the case. My
>blood pressure med, propranolol, is also suppose to work on anxiety and
>sweating-it doesn't for me. Now they are trying me on Buspar to see if
>that helps. So far, not helping.
>
>I just recently had my endocrine lecture in Nursing school and I thought
>the teacher was talking about me when we got to Cushing’s Disease! The
>only thing is that I do not have many of the purple stretch mark striae-
>I have a few faint ones. I have the excessive hairiness, pendulous
>abdomen, roundish face, slow healing, chronic fatigue, weakness. And
>the buffalo hump on the neck-I had asked my doctor who does my hormones
>about this a couple of months ago. It looks strange and it seems to me
>that I no longer have a neck-the range of motion has decreased quite a
>bit. She said it was probably due to steroid use (predisone). I think
>it makes me look like mannish body builder. But I remember thinking
>that I had never taken predisone for any length of time or in any high
>dose. But for whatever reason did not say so to her. So imagine my
>surprise when I hear about this in class! I am so excited to think that
>maybe, just maybe this is it. So I go to the doctor (but do not get my
>regular doctor but a resident-probably the first mistake here). I tell
>him what I learned, my symptoms, showed my hump and requested serum and
>urine cortisol tests and serum ACTH tests. He does not think I have
>Cushing’s but said he would check my serum cortisol-so in other words,
>he would do a half-assed assessment for me. Well no one thought I could
>be going through menopause either and I was!
>
>I just wanted to share my story with you with the hopes that maybe
>someone has some suggestion for me or that maybe my nightmare could help
>someone else. I do not know if it is the PCOS, the peripheral
>neuropathy, the weight, premature menopause or Cushing's Disease that
>has me in the state I am. I have heard that there is a correlation
>between Cushing's and PCOS, and PCOS with insulin resistance too. I
>tried glucophage at one point but did not notice much of a change but am
>now thinking that maybe I just was not on it long enought or at the
>right dose.
>
>It has been very therapeutic for me to write this all down-I really do
>not talk about all of this since who wants to hear it for 17 yrs? And I
>have found that it takes a lot of research, trial and error, and a group
>effort often to get the medical help we often need in our society due to
>the extremely poor healthcare system we have. Which is why I am going
>into Nursing. If I can help just one woman through my own experiences
>and manage to have them avoid some of the anguish I have gone through,
>then I feel that it has all been worthwhile.
>
>I live in Tucson, AZ and do not know of any other doctors to try but
>would welcome anyone that you all have had even some success with. If I
>have to, I will even go to Phoenix-it is a 2.5 hr drive but I am so
>desperate to have all this stop. Thank you for taking the time to read
>my story. Hope it helped you all to not feel so alone out there....I
>know it helped me!
>
>Sincerely,
>
>--
>Lindsey Ayotte
>
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