Panhypopituitarism [Archive] - BrainTalk Communities

Naominjw

05-29-2008, 03:51 PM

My daughter. I could write a book about it... literally. Her life has been a comedy (tragedy) of errors. The worst error of all was when she had a biological symptom--depression--and she got dagnosed with, and treated for, the name of the symptom--depression--instead of whatever biological problem caused that symptom. It changed the course of her life because stigma against "mental (http://www.ItsNotMental.com)" illness is alive and well in the medical profession.

We still don't know exactly what is at the source of everything. She had over 15 diagnoses, but it is now compressing down to less. The hypopituitarism covers a lot. She is on GH, T3, and T4 but her cortisol has not been adressed (low ACTH & low Cortisol, but not life-threateningly low (~7 cortisol --level range15-22) They just keep testing, and re-testing and testing some more, scratching their heads, then testing again. At least they've moved on to testing it in different ways. he serum level was tested repaetedly for over 3 years, then switched to salive, then back to serum... then to a one-time urine... back to serum... now a 24-hour urine. And in the meantime, the years slip by.

At least they found it. An endocrine problem was first suspected when she was 1 year old. She was almost 17 by the time an endocrinologist finally looked past the bizarre problems from brain and body alike (called "mental" (http://www.ItsNotMental.com)... like extreme fatigue, pain, sleeping, insomnia, ataxia, brain fog, cold intolerance, temp dysregulation, etc) and ran the friggin TESTS!! By then, among other things, she had osteoporosis. He found she had intestinal malabsorption. That complicates the picture a lot.

Her blood profile looked a lot like someone with neurosarcoidosis, except for the vitamin D. That was not high, and the intestinal malabsorption prevented her from absorbing calcium which led to the severely high serum calcium level--because it was leaching from her bones... but in neurosarcoidosis the high serum calcium is from excess vitamin D causing too much calcium absorption. But other things matched. But the vitamin D thing didn't.

So... it is "idiopathic" hypofunctioning of the hypothalamic-pituitary axis. So far, her adrenals seems fine.

So... that is what brings me here. My job in life is to learn and get her proper medical treatment. Because, as I have learned, we can't depnd on doctors alone. Even when a pediatrician and psychiatrist both are saying they think she is having neurological and endocrinological problems... the specialists don'thave to run a single test. .... And we had GOOD insurance! So money was not the issue.

**shrug**

I don't get it. But it is water under the bridge. We can't bring back her lost years of childhood. But I can keep trying to give her as good a quality of life as is possible withthe problems she has. And she herself has inner strength and determination... I admire how she does eerything she needs to to be healthier. The only obstacle over the years was our not knowing what she needed. Like as soon as we understood the intestinal malabsorption issue and what she needed to avoid (gluten, soy, etc) - bam - she did it.

Every little piece of knowledge though seems to come so slowly!! Sometimes I feel like such an incompetent idiotic mother for not knowing things SOONER!!

I really wish we had artificial intelligence/knowledge base software to access where we could plug in all the symptoms and labs, and have it step us through so we know what other tests are needed in order to definitively diagnose something. Sheeh - we worked on those programs back in college 25 YEARS ago!!! Where are they now? Why aren't we using them!???

How's that for a soapbox... your fault ;-) You asked what brought me here... and got me started...

-"Naomi"

rumpled

05-31-2008, 10:28 AM

Have you found the magic foundation by any chance?

My tumor twin was labeled bi-polar... I was labeled depressed. Understand the stigma. They think it explains everything and I used to have a very stressful job (chasing terrorists). So they used to write everything off. Just need to relax, change my diet and exercise more and I wanted to kill them all. :D

I have so many idiopathic things well.. it is even on my medic alert bracelet. Idiopathic thrombocytopathy. I think doctor made it up just for me. I started to imagine that idio = that they were too idio-tic to come up with a cause and pathic = pathetically bored with me coming to the office over and over... But then I am sick in the head and have a strange sense of humor... only thing that has helped me cope through the years. Oh but they think the humor is a sign of health, oddly.

This is not a very active board for endocrine matters...
Very few docs understands the endocrine system - even the endocrinologists - it took me 12 years to get help even with a pit tumor. I had to travel 3000 miles and when I saw that doctor he says sheez, I could have diagnosed you sitting in the waiting room and them proceeds to explain years of lab errors and other mysteries.... I went to surgery, found I had uncurable hyperplasia... had a BLA... then found I had this hidden nuero-muscular disease treated by my cushing's (sweet!). Now I am on social security. My tumor twin is the same, only worse off to the point of almost being dead. Can we find help? No... we try but the endos now know we are at some point that they do not understand - and the nueros are just blaming everything on the steroids... like um, we had control over that?
My rant.

Naominjw

06-01-2008, 12:15 PM

Have you found the magic foundation by any chance?

I once did... long ago when she was not diagnosed. Forgot about them.

My tumor twin was labeled bi-polar... I was labeled depressed.

Real twin or someone like you except with a tumour?

Understand the stigma. They think it explains everything

Just about everything neurological, endocrinological, autoimmune, and metabolic fits into the DSM-IV .

Just need to relax, change my diet and exercise more and I wanted to kill them all. :D
Stigma. For adults, they blame the victim (patient). For children, they blame the parents. Well... we really didn't get that except by people who didn't know us. If anything seems "emotionally" wrong with a child, the parents must be doing it, right? Especially if the child is diagnosed with a "mental" illness like depression. THEY don't know the involved professionals said the depression was biological.

I have so many idiopathic things well.... I started to imagine that idio = that they were too idio-tic to come up with a cause and pathic = pathetically bored with me coming to the office over and over... But then I am sick in the head and have a strange sense of humor... only thing that has helped me cope through the years. Oh but they think the humor is a sign of health, oddly.

My dad says "idiopathic" means the doctors are pathetic idiots.

Very few docs understands the endocrine system - even the endocrinologists - it took me 12 years to get help even with a pit tumor. I had to travel 3000 miles .... [QUOTE]

I don't understand why the local endocrinologists didn't help my daughter. We had to travel half-way across the country, too. The endocrinologist who at least got us pointed in the right direction did it by running tests. Any endocrinologist could have run tests and at least figured out something was wrong. But really--this guy did more. He applied cutting-edge research. A lot of doctors don't know the research unlss they themselves are still involved in research. Most doctors don't know about things until after a pharmaceutical company comes out with a pill for something. Then the pharmaceutical reps teach the doctors about the "problem" and the "solution"--their pill.

That's why, for instance, homocysteine isn't usually tested -- just cholesterol. Homocysteine is supposed to be a better indicaor of cardiovascular risk but hey - there are no pills to lower homocysteine--just cholesterol. Why test homocystene if the soution to that is diet, exercise, and nutritional supplements?

Most doctors do not know about another neurochemical related to hypothalamic-pituitary functioning called Endothelin-1 (http://http://content.nejm.org/cgi/content/extract/333/6/356) (ET-1). They would all know about it if the pharmaceutical companies had succeeded in developing a pill that was safe, to lower it (high levels also raise cardiovascular risk). But they kept failing in stage 2 studies. So doctors don't know about it--let alone test it. Nor is it even in their brains that people could have this elevated... or be deficient.... and deficiency can have a host of bizarre symptoms, including causing excessive PAIN (http://lib.bioinfo.pl/meid:229795)!!!

No... it is a lot easier to just call everything "mental" (http://www.ItsNotMental.com) .

[QUOTE]My tumor twin is the same, only worse off to the point of almost being dead. Can we find help? No... we try but the endos now know we are at some point that they do not understand - and the nueros are just blaming everything on the steroids... like um, we had control over that?
My rant.

:( One endocrinologist said if anything was wrong with my daughter, it would be the fault of meds, therefore it wasn't his responsibility to run any tests. :mad: Even though it was the prescribing physician and pediatrician who sent her to him.... and even though the endocrine symptoms began long before any meds... back when she was 1 year old (and the 1st antidepressant wasn't until she was 9. :rolleyes:

Sure wish I had a re-do button ... or one of those "EASY" buttons :D

rumpled

06-01-2008, 05:02 PM

Er, my husband bought me an easy button... we keep it at the bottom of the stairs to encourage me to get to the top of them, which is no easy task now...

Ah... perhaps at the time magic was not as active - but now they have lists of docs and seminars and are very helpful to many. Not all, but many.

My parents were not helpful to me at all... even though now in retrospect we know now this extends back to when I was a teen or even earlier, my father considers anything that is a syndrome "in your head", (which was pretty ironic when it did turn out to be in my head literally ha ha... and my my asks how my cushions disease is... like I am a sofa (and she is a RN!).

I went to Mayo, lots of good places, got told to ignore the pit tumor... ignore everything else... perhaps if it was anything, it was my thyroid and of course, that was easily controlled by synthroid... some how my TSH spiraling around just never caught any attention.

My tumor twin is someone I met on the cushing's board... we started to post to each other - do you have this symptom ME TOO! It got to be that we were too alike and then I had surgery, she followed a few months later and our pathology was so alike it was eeerie. Our adrenals were similar as well and now we both lost muscle after the adrenals going out. She is much younger than me (late 30's, I am mid 40's), she lives in the mid west, and while we have both moved around a lot, we have not lived in the same places, so that rules out environment. She is actually far worse than me now. And oh her docs don't want to test her - she travelled too far for testing and surgery! Huh!

Totally understand the pain - BTW, cortisol going up and down causes tons of pain. It is like withdrawal akin to heroin.

I started acupuncture. Not perfect but I feel at least some stability and relief that I had not found before.

Shame... I feel for your daughter... and it is hard to find docs that will do comprehensive testing. I almost died in March (hospital *error* idiots would not listen to me and give me steroids when I had a fever of 103.5!!!) and the neuro-endo that was monitoring me after that only now runs 3 tests... ACTH (which is around 1800), renin (again, too high) and electrolytes (since my near death they all tanked). Like that is going to help when my health is in the garbage bin? I still drive 600 miles to see a good doc who runs comprehensive testing so at least I feel I am getting something.

Naominjw

06-01-2008, 05:30 PM

my father considers anything that is a syndrome "in your head",
:D
Uhhhh.... yes.... it is in the head, but not the way he meant it..... Like my daughter who started having vision problems at 9 ... yup... that's where her eyes are--in her head. Was there really something wrong? Yes. Found 2 years later.

rumpled

06-02-2008, 10:17 AM

I just found your blog and will try to read it...
I used Friedman to get diagnosed, now use Dr Gordon in Pittsburgh to help figure out the rest of the stuff going wrong.
Here is my bio on another site...
http://www.cushings-help.com/jennifers.htm

Naominjw

06-02-2008, 03:19 PM

Reading your bio... OMG..... yours reads so similar to my daughter's--not in the specifics but in general!!! The docs know so little. Something you said about your body obviously being so sensitive to your hormones being a even a little whacky... I read that some women get "schizophrenia" late in life, and their "schizophrenia" is helped by estrogen. Some of us wondered ... then... why the heck is it called "schizohrenia" rather than "estrogen deficiency"? Oh... because not everyone with estrogen deficiency gets psychotic symptoms? Hellooooo????? Might that not be because some people are a lot more sensitive to hormonal fluctuations? If replacing the hormone fixes the problem WHY CALL IT A "MENTAL" ILLNESS????? Oh... because it is women being affected and not men? Oh... my bad. (sorry about talking to myself... I'm used to that).

My daughter--also problems with cold. Oh so cold. Hypothermia even. Striae... yep. Skin petechiae also... little red spots from broken blood veseels - did you get those?

You said... "I had low BP, no blood sugar issues and more normal cortisol tests than abnormal" She had low bp and kept being dizzy and passing out. Since her hormone tests kept fluctuating, at first glance, some things seemed normal... like cortisol. Then not normal. then not normal again... then it was normal... then not normal, then not then not normal again... and it just stayed NOT OK (low)... and only then did she get ACTH below normal. So years pass by while the doctors scratch their heads. And yes -- they ignored symptoms when she was younger.

Your head pain. Sounds like maybe you had a type of migraine called a cluster migraine? My daughter had a few of those. They are referred to as suicide headaches because they are so painful they drive some people to suicide.

I do not understand some endocrinologists.... they may be great at diabetes (their "bread and butter"), but they should be experts at the rest of it, as well. At least--that's what we expect.

Telling us something is "rare" is not useful to us. If you don't know what something is... there are a 100 tests that can be run. The costs of the tests are nothing compared with the cost of not knowing and not treating correctly, and treating incorrectly and the cost of the suffering and lost income for parents and the child's disability. At least... at least.... run the tests!

Glad you found Dr. Friedman. We had to travel also to find an endocrinologist who at least ran the tests that got us looking in the right direction. Why is it that we have to search for an endocrinologist that will do their job? If they have endocrinology as their specialty, shouldn't any one of them be expected to order the same set of tests and have the same knowledge?

When we started out, there were no lists on the Internet. The doctor we found we did find via word-of-mouth from other people we met on the Internet. A closer doc my daughter has just started seeing, I noticed is linked to on the website with your bio.

rumpled

06-02-2008, 10:36 PM

Well, I did not list all the paranoid feelings I had with the high prolactin... plus the depression I had (which the doctors said was the cause of everything - not simply an effect!).
Please, I saw a pituitary specialist close by me and she told me my tumor was too old to be causing my problems.
I agree, women are more afllicted with hormonal issues (ack - who decided this!) and all the nice side effects like depression, sore breasts, weight gain and all the fun side effects that go with it... only I used to lose weight with my depression 'cause I am just a weirdo.
When I started out, there was no internet...I got a couple of books... and sadly trusted the *cough* experts that said to ingore the time bomb in my head.
I started to read your blog...
I bring a TON of medical background info to my docs... so that made me laugh, sort of... my files tend to be HUGE.
I also made up, at the behest of one of my better primary care docs (upset he moved on... drat...), a list that at the top has my name, birthdate, allergies, then lists my medications in a chart with dose, when I take them, why (meds can be for multiple reasons), prescriber.
Then below that, lists my surgeries - dates, names, when, where... (so far, 12)... all this barely fits on 1 page.

I still get those burst little blood vessels. Weird huh.

Glad you found a good doc... lucky.

Judy4

07-09-2008, 12:49 AM

HI,
I hope you still check this thread. I enjoyed reading it so much. I have had similar frustrating issues with the docs I saw when living in Atlanta. Basically they told me i was aging. After a year of that craziness , through my internet research, I too found Dr. Friedman.
A little less than 2 years ago I moved to Los Angeles area, so am very lucky in that regard. I have hypopituitarism . I believe everything but cortisol is being replaced. My cortisol story is crazy, I am glad to see I am not the onlyn one.
It started out being too high, then normalish, then too low, then average. A month ago i was sure it was too high. I had all the symptoms. I did a 24 hour urine and it came back with untraceable levels of cortisol!! That actually happened last spring as well. Two weeks before that it had come out high in a blood test.
I am going to stop now as i am not sure anyone will read this .
Glad to have found friends
Judy

rumpled

07-09-2008, 11:13 AM

No we are still checking!
Sorry to hear that you had so many issues... With so many out there, wish there doctors spread out to help out us but I had to see Friedman as well and he helped me.
Tell us your story.

Judy4

07-09-2008, 02:21 PM

Hi,
How do I begin this story and not make it a book!!!!!!!!!
The end of 2003, I had my second stress fracture in my heel. No weight bearing, I was an aid in a special ed. class. I decided to get a physical as I could take the day off. I had heart palpitations, so I was sent to a cardiologist. I at that time was still in my obsessive running days. I was running the Atlanta Thanksgiving half marathon the next day. I was all set to do a stress test. Very excited as I could run at a dr's office.

The doc came in for the second time and told me to get dressed, I could not take the test as my bp was too high. Very strange to both of us. It was 197/103.
My older brother had a pheo, so the testing began. I had Kaiser and was sent to their endocrinologist. he not only was not personable, but I later reported him for abusing meds. His first question when walking in; the office was ....Why are you here?.. He asked it in a mean way too. During my time with him on and off for a year or 2 he NEVER wanted me to come in to the office only phone apt's.
My primary doc was wonderful and sent me to a different endo who contracts with Kaiser. Well, I got an apt in 2 weeks and was shocked. I got there and was seen by a nurse practitioner. I was not happy, she knew nothing about a pheo and had to call the Dr. in. He ordered a bunch of tests. Two weeks later I am back with the results. Still a patient of the nurse.
She tells me Cholesterol is high, of course bp is high, cortisol is high, anemic, bone density is low, they forgot to test aldosterone in the urine. Then she says bye!!! I also had complained of being tired and extrememly cold. They tell me thyroid is normal.
After I showed up again, as i have researched, she has nothing to say except my running caused all this and I am just too busy and stressed.
A few more visits. Oh I forgot my left adrenal gland is enlarged. Getting no where, they decide to send me to Emory University where a Dr. there they state is the guru of adrenal glands!!!
I get an apt to see him about 4 months down the road. I bring my cell phone with me when I run as I still don't know if I have a ticking pheo bomb inside.

At that point I start having GI bleeding and am having testing by a gastro doc. Upper endoscopy shows a stomach polyp, second one a hiatal hernia. Also find out ferritin is at only 4. put on iron, getting no where!!!Sent to a hematologist and hadd IV iron.
Through my research discover Dr. Friedman. I made an apt to see him in the summer, we were coming to visit my husband's family in LA anyway. At this point I have decided I may have cushings with an adrenl gland tumor.
Almost chickened out on my way to Dr. Friedman's. His first diagnosis (almost a diagnosis) agrees totally with my thought. I am sent back to do more 24 hour urine's and nite time salivary's.

Then I finally have my Emory apt. I find this guru to be extremely arrogant. Probably pissed that I have gone to see Dr. Friedman. He explains my stroke level bp to be because I get nervous at Dr. apts, low bone density...I did not eat enough dairy, high cholesterol....I ate too much dairy, high cortisol...he did not think it was too high,probably because I was a runner.Also have thyroid nodules.
Anyway a few frustraating years in Atlanta.
In Nov I came back to LA, that is when Dr. Friedman diagnosed central hypothyroidism and starts me on meds.
That is also when ACTH starts being up and then down and DR. Friedman is not sure if it is pituitary or adrenal. Lots more testing, arguing and getting totally frustrated in Atlanta.
I did have adrenal venous sampling and (the name is escaping me)also the sampling to the pituitary. Kaiser insisted they be done in Atlanta, kind of a joke as the Dr. there had only done it 2 or 3 times in his life and admitted it to me. Also I was awake and heard all the swearing and stess going on as they were having such trouble and did not know what to do. The first time I arrived at the hospital at 5 am, by 8 the Dr. came and talked to me and they sent me home as they did not haVe the medication needed to perform the test!!!
Eventually I was sent to Michingan to have the adrenal venous sampling repeated and yes, Kaiser paid. That was a challenge.

Bottom line now, I have hypopituitarism. My cortisol is up or down. When I thought a month ago it was definately up it ended up being untraceable. I have a ton of issues with cartilage and low bone density. I had cervical 3 level fusion last summer. A month ago I had my right hip replaced as the cartilage was gone.
I have read that sub normal growth hormone causes a rapid acceleration of the aging process, such as cartilage issues.
My spine has low bone density and degenerative issues as well. I am possibly looking at thoracic fusion surgery next.
I am on thyroid meds, growth hormone injections, testosterone, estrogen, bp meds, cholersterol meds, depression meds, GERD meds, fosomax. Still not sure if I have cyclical cushings.
I have always lead an extremely healthy lifestyle, excercised almost every day and am falling apart!!!!!
Oh Dr. friedman has also diagnosed my with ADD. I have an endocrinologist close to me as Dr. Friedman still requires that if yu live in LA. It is as yuo probably know still difficult to get your email past Lynn to the Dr.

Sorry this is so unbelievalby long. As you know I have left out so much frustration.

Judy

Naominjw

07-09-2008, 03:17 PM

Hi Judy! Yes-- we read this thread. Everytime someone adds to it, it shows up under "New Posts" we click on near the top of the screen.

We understand FRUSTRATION!

About the fosamax... my daughter's bone density improved from the growth hormone, supplements, and maybe getting some energy so she was more active. One doctor commented about her robust improvement in bone density --that's the resiliency of youth.

About Cholesterol... have you also had your homcysteine levels checked? And connected with that... levels of vitamins B12 (cobalamin) and B9 (Folate) checked? My daughter also has a metabolic problem where she could not utilize them well. So a "normal" amount for her would still be a FUNCTIONAL deficiency. The cholesterol meds have their own side-effects and if we can correct underlying problems instead, of course, that's better.

My little girl felt so old at such a young age. I know what you mean about your body falling apart. Hers was too, but she is doing better than before.

Oh- About the cortisol fluctuating... MY DAUGHTER'S ALSO!!! How can they give replacement when it is sometimes normal?
I know that some medications can affect levels... but, gee... if it looks like something is wrong with your adrenals... Argghhh! That complicates the picture. Too many endocrinologists don't even want to deal with these complications. But they are supposed to be the experts.

We are still hoping that when we fix more underlying biology, like give time for her intestines to heal, maybe her cortisol level will even out (hopeful thinking here).

-"Naomi"

Judy4

07-09-2008, 08:31 PM

Hi Naiomi,
thanks for responding to my "book". Actually I should have written a book on all the medical frustration and mistakes I caught.
I have been on growth hormone for 1 and 1 half years. No, it has had not positive effect on my bone density. The first year on fosomax, I still lost some density, the second year, lost a tiny bit, this past year, I switched machines and it came out about the same. When I saw Dr. Friedman a few months ago he said I had been on fosomax a long time and should stop taking it. I told him that a month previous I had fallen , on my left side, and broke 2 ribs on my right side. He said continue taking it!!
Last month when I had my hip replaced, my surgeon told me my bones were very soft and my femur fractured during surgery. So bone density is on the top of my worry list now.

How is your daughter doing now?
Judy

Naominjw

07-10-2008, 08:19 AM

My daughter has improved and is improving. She has more good days than bad. That's something!

More about bone density... When she was finally checked out instead of her symptoms just being dismissed as "mental (http://www.ItsNotMental.com)", her blood calcium level was so high it was suppressing her parathyroid. The calcium was from bones leaching. They then ran a test where she had to take calcium with vitamin D. It was an absorption test and I don't remember the specifics of how it was done except it took a large part of the day. She did NOT absorb the calcium+vitamin D. She is being monitored by a "bone-metabolism specialist" who is actually in the department of nephrology. He hasn't had to do much other than monitor and re-check her density each year. He also tweaked her supplements so her kidneys didn't have to work too hard getting rid of excess of any one mineral (done with urine testing).

One doctor suggested supplements to help mitochondrial function (based on her severe disabling migraines since infancy) and that one thing had one of the most profound effects on her quality of life.

It's a real puzzle, isn't it? That's because the doctors don't know what the one underlying genetic glitch is... but whatever started it, the result is that many different facets must be addressed.

And I AM writing a book... close to the ending....

-"Naomi"

rumpled

07-10-2008, 09:28 AM

Oh, I totally understand the book (and Lynn... I can tell you horror storys... but I live in NJ and was a patient of his! People come from all over and she makes it so hard, she is a flake [cannot put the real word as I would be banned].
Has your PTH been tested? Ask him about FORTEO which is a daily shot - but will help you build actual bone - and there are IV biphosphates - for your daughter too Naomi - that if you are having a lot of breaks, the IV drugs you can get once and they are so much more effective than the pills. So you can have that done for a few hours and then forget it. You may need to see a bone endo - there is a specialist in CA, and several here in NYC. There are special calcium tests to run - have they run them? Ionized or something like that? Are you taking Vit D?
If you are still on all the depression meds and the bones are still going, the cortisol is still a factor. It is eating your bone. I was a cyclical mess. Are you still testing? 24 hours, 10 hours, salivas? Do you have a pit or adrenal tumor? What is holding you back from surgery?

Judy4

07-10-2008, 02:33 PM

Hi Rumpled,
I do not have a pit or adrenal tumor. I have had an enlarging of one adrenal gland. Wacky enough results to have Dr. Friedman go from thinking it is adrenal then pit with the cortisol. I have started another round of testing. First blood am cortisol came out high. first 24 hour urine came out untracable cortisol. Then came the hip replacement surgery. I am 5 weeks out of it and not sure if I should start another urine or if it is too soon after surgery. I sent an email to DR. Friedman about a week and a half ago and still have not heard back.
I have an endocrinologist as Dr. F. still wants us to have one if we are in LA and I see her at the end of the month.
I will discuss bone density with her as it really worries me. I was also having a water retention problem a few weeks before surgery, she could not figure that out and sent me to a nephrologist. Kidney's checked out normal, of course.
This fall will be 2 years since I have had any MRI's so I don't know if they should be repeated.

Just a mess
Judy

rumpled

07-11-2008, 10:34 AM

Hmmm... sorry about the mix-up... I am a flake these days... my concentration is garbage.

I would look up McCune-Albright disease and find docs that treat that in your area and see if you can get in. Your bones really seem to be taking a beating so maybe they can help you as they would be bone specialists.

I know that F was going back and forth with me as my ACTH was normal (which points to adrenal source) but my source ended up being pituitary. My adrenal scans were all normal (both before and AFTER surgery) even though those puppies were huge and one was nodular so often it is not straight with testing to figure it out. On another board, we have seen it where people go in and have an adrenal out and then find out... uh oh, it was pituitary so they end up that they are not cured as the doc did not find the source as the doc had no idea what they were doing. Still all the waiting drives me nuts.

BTW, my enlarged adrenal gland pathology showed that it was pituitary source.

Judy4

07-11-2008, 11:54 AM

Hi Rumpled,

I get DR. Friedman going one way or another as my levels of everything fluctuate wildly. I also had a prolactin level that was 10 times higher than normal. I had the ability to nurse babies again!!
My expert endo in Georgia said , it could be meds that I was on and they do not check the pituitary until it was like 10 times higher than normal. I then asked him to do the math again. Of course he was dismissing everything of mine . That got his attention.
When I left to move to Ca. his comment was ....So now you and DR. Friedman won't have anyone to argue with......
I had seen DR. F a month or so previously with the extremely low IGF-1 and Emory Dr had seen that my thyroid had enlarged. He was actually going to do testing then. I decided to wait until I moved to Ca and have Dr. F do it , even though it cost me more. Emory DR did want me to let him know the results.
Some day soon I will email him and see if he responds, just for kicks

Sat will be 2 weeks since I sent a question to Dr. F. I brought that subject up with him once. He said sometimes Lynn forwards email to him daily, somethimes every 2 weeks, sometimes longer. I probably should just go see him when I can drive again. (my hip is not ready)

Now I am rambling. I'm sure yuo can tell, I am mostly hanging around recovering from surgery.
I will look up that disease.
Thanks
Judy

rumpled

07-11-2008, 08:33 PM

I used to have wild fluctuations as well... but that was when I had two pit tumors wreaking havoc in my head. So maybe that is part of the thinking with Dr F. Dr F likes to answer at 3am... thinking off the top of his head and er, sometimes only on the last results. It is hard to keep it short and yet put your history in the email so you can get a proper response. I used to fly out to see him as parking my fat self in front of him was more of a catalyst to getting the ball rolling as I kept telling him I was not cured but he was always an optimist... seeing me changed that for sure and I got action pronto.
Gotta love him as he gets an A+ for brilliance but a D- for organization. If you see him on TV, you see his academic office... it is pretty funny - more stacked up than where he sees patients.
Ah the nursing... I thought about being a wet nurse for a while... I was really freaked as I have never even been pregnant so that whole thing was a bit of a surprise.
I would keep the Emory doctor in the loop - it cannot hurt to see another set of eyes!
Ramble away... I have not worked in a couple of years... this is my life now it seems.

Judy4

07-11-2008, 09:22 PM

Hi Rumpled
I agree with Dr. F's grades. He is brilliant. I flew out to see him 3 times when I lived in Georgia. I also sent him a million emails, which at times he answered pretty quickly.
Now that I live here, I am not sure what frequency I should go and see him. I do have my local endo, who he remembered working with at Cedars, she is really nice and always gets back to me that day., A few weeks before surgery when I was gaining 2 pounds every other day for a while, I kept thinking of things it might be and showing up at her lab. She always came out and spoke with me. There I was the one suggesting this and that, whch all came out normal.
When I emailed the good Dr. F , he immediately emailed back, it is time to readdress cushings again.

My body has always handled fluid weirdly. I have had hyponetremia a few times, I figured it out, had the lab work done and appeared at my cardiologists office with it,.!! Some days (I always drink water all day) I never have to pee. Yes, then the weight will be up. When I had to have a uterine ultrasound (fibroids) I drank more than the required amount and was sent back to the waiting room as there was nothing in my bladder. They gave me a large cup to drink, I stood in front of them and drank it and another one, still no urine!!

I was just thinking about your high prolactin days. It shocked me enough and I nursed 4 kids. I can't imagine what it did to you!!

Where did you have your surgery? Is everything straigtened out?? I am sorry if I already read all of this, but my mind is gone and still on percocet.

I feel and read somewhere (one study with rats) that lack of growth hormone causes rapid acceleration of the degeneration process. Specifically loss of cartilage. Have you had any problems or heard of that??

Better stop rambling
Judy

rumpled

07-12-2008, 09:28 PM

Hi Judy...
Oh man... my body still is wacky, sadly but not nearly as wild as it was with Cushing's. Then it was like I did not know what I was going to deal with when I woke up. I would gain 35lbs in a two week time period (while dieting and going to the gym). I also had a lot of edema but the doctors very nicely told me it was not fluid... implying I just needed to diet. I remember those 2lb a day days... I would order clothes from a catalog and not be able to wear them when I got them. It was so wild. I never changed my diet yet my whole body was alien to me.

I had both my surgeries at Cedars - both pit and adrenal. Er, everything straightened out is um, a matter of opinion. I am cured of Cushing's! But I have adrenal insufficiency, some weird neuro-muscular thing that apparently I was really good enough to self treat with my own home grown steroids (was that NOT thoughtful of myself????!!!) so that as soon as the oodles of steroids went away, so did the use of my arms and stamina in my legs... bilateral frozen shoulders sucks no two ways about it.
Bones... I have a PTH issue since my thyroid came out in two surgeries so my parathyoid is barely hanging in... so my bone kinda is dead. I have to take double the calcium and the D and all since I don't have ovaries and adrenals for estrogen either. I was growth hormone deficient, but weirdly, the hysterectomy changed it but now I am barely hanging in so... it may happen that I may have to go back on it again at some point. My uterus was garbage - fibroids, adenomysis, endometrosis... the gyne came out and apologized to my hubby as I had wanted one years before and he was delaying and then when he saw the mess... he said I should have had it out years ago - no wonder it hurt. Now I have a ptotic kidney but I am assured all is fine.

I always tell my hubby that is the sum of what the docs tell me - I am FINE or it is MILD but somehow, it never really ends up that way in the end...

I hope you do not have Cushing's. I only wish that on endos that are incompetent. LOL.

Judy4

07-13-2008, 12:05 AM

Hi Rumpled,

The weight gain thing drives me absolutely crazy. After this hip surgery, I did not eat for 3 days and spent one day puking. Then the next few days I ate extremely little. Of course there was lots of swelling. But, when I got home and got on the scale I had gained 20 pounds.
Well, 5 weeks later the incredible swelling is gone and I am still up 6 pounds. I am not eating very much either.
I still have shorts for the summer that I bought and have never worn as they did not fit a few days later when I went to wear them.

Sorry everything did not clear up. But, with so many glands removed, I guess you would be a bit of a mess. Have you had any bone breakage issues?
Did you get any relief from your frozen shoulders? That sounds pretty awful. Why was your thyroid removed? I now have enlargement and nodules. I imagine in the fall when it is time for my next ultrasound the nodule will be big enough to biopsy.
Now along with healing my hip, I need to take care of my spine.
Talk to you soon
Judy

rumpled

07-13-2008, 08:11 PM

The gaining is horrid... sorry you are experiencing it as well. I think I have every size from 12 to 26 in my closet.

I had a follicular adenoma in the right side of the thyroid - had it out when I was 20. Had a couple of colloid nodules and my thyroid kept enlarging plus I have a large lymph node in my neck, so it was thought that taking all that out to see it would be helpful when I was 40. The lymph node, oddly even though it literally sticks out the side of my neck (to this day as well) hid when they went in so he could not get it and I came out with bruises all over my neck... which a friend photoshopped for me and so I have a KEWL thyroid smiley (the scar is the smile, the bruises are the eyes) as a cover for my medical picture album I torture people with (see how I used to look? see my tumor?)...

Worse... LOL... I took my pituitary tumor and put a santa hat on it and some clip art eyes and sent in with our little holiday message... only one person understood it (the tumor made a nice beard albeit a bit red...) with the pituitary as the face... I am so bad.

But my bones seem to be okay except for the small issue of not regenerating. Eh. Now I have enlarged lymph nodes from my neck to my knees... but I am fine. Fine. Fine I tell you.

Judy4

07-14-2008, 02:17 AM

Hi,
Well, I'm gaining weight, yet at this point I feel if cortisol is messed up it is toward the low side. Today I am feeling every injury I ever had and my hip has been hurting (well around the joint).
I may call my local endo up and see about doing another 24 hour urine. Of course last time I waas sure it was high and ended up lower than low.

I don't even remember what is in my thyroid now!! I'll wait until Oct when it is time to repeat the ultrasound.

It has been over 2 weeks now and no response from Dr. F. on my question. I guess if I really want an answer I must make an apt.
Did you ever have issues with water retention?

Well, I am sitting here spacing out. I have not taken any pain meds this evening, so I guess I need to go to sleep!!! I take trazadone for that.
Talk to you later
Judy

rumpled

07-15-2008, 09:21 AM

When I cycled, I was always in a lot of pain... now I know it was from the cortisol variations. Like you, I always thought when I was in pain I was high but the best time to test is when you feel good that is when the cortisol is high - the inflammation is lower. Weird huh. But it gets hard to tell especially if you are a rapid cycler. When I started to do the 10 hour urine tests, I discovered what I thought all along, that I cycled high at night. My 10 hours I would hit ranges that were almost as high as the 24hour ones, but I guess I was so low during the day, the overall averages would wipe those out...

I had issues with water retention at times - it was very unpredictable. My body was a freak show. Sometimes I would swell up, sometimes it was normal. Sometimes I would gain, sometimes I would be stable. Sometimes I would have acne everywhere, sometimes I would be somewhat clear... but I was always tired. Not that I slept well.

Yeah, F is a bit unpredictable on his responses. At least you are close enough to see him without flying there! Lucky. Did you see him on TV?

Judy4

07-15-2008, 12:44 PM

Yes, I have the same issue with cortisol, it was always high at nite (tested at Dr. F's office) DR. Z and I would close the place many nights and then talk for another 1/2 hour!!
Same think I think it is so low during the day that it all averages out. I know what you are supposed to feel like when it is high. More energy, less aches and pain, high bp, fluid retention, weight gain. That is exactly the way I felt when I did the last 24hr urine where it came out lower than low. That is why I am so confused now. I looked at the list of high and thought , there is no question now!!!
Now while recovering from hip surgery I am so achey I wonder if it is a cortisol thing. I always think that when every old injury hurts. I am on a hip/knee replacement forum and I know everyone heals at their own pace , but at this point it seems most if not all people have stopped taking the narcotic pain meds. I try to cut back to almost none, then I am limping pretty bad.
I don't know if I should blame it on endocrinology issues.
I did see Dr. F on National Geographic. I made my kids watch it as they have heard so much about him.
I don't know if I should make an apt as I have an apt with my really local endo in 2 weeks. It is crazy seeing them both at the same time, although Friedman is just so brilliant!!
Well time to get water and take my morning dose of meds
take care
Judy

rumpled

07-16-2008, 10:15 AM

Ah Dr Z... you would think for all the draws he does that he would learn to do it better... ouch. Nice guy but he hurts.
The gal on National Geo (Kate) is a friend of mine. She is doing a podcast tomorrow. I already did one. We are doing them on Cushing's.
The whole cycling thing is wild and the doctors just do not believe it. I had one doc tell me point blank that hormones do not cycle. I asked him so what is a period? He got mad at me.
The whole thing about cyclical cushing's was debated in a neurology journal - one doc said it was simply obesity. Another said the disease exists. It was rather... sad. I live it and hardly anyone thinks I exist.

Judy4

07-16-2008, 12:51 PM

Hi,
I know about Dr. Z. The funny thing is there are people out there who do a draw and I feel nothing. At the hospital with my hip replacement, I had a lovely visit from the lab every morning at 4am. Not one of them hurt in the least bit!!!

so, what is a podcast?
My guru of adrenal gland issues at EMory in Atlanta once asked an intern to draw me what Dr. F thought was going on. The poor girl just stood there with a perplexed look on her face. So the doc got a pen and drew a huge chart on the exam table paper. He drew normal, cushings, what Dr. F called cyclical. When he left the room, she apologized for not knowing what he meant and we talked about how difficult, arrogant and how she waas counting the days until she was free of him. She then folded the whold thing up so I could take it with me!!!!
But no , he did not even want to hear the work cyclical. OF course he originally told me I had high cholesterol as a vegetarian as I ate too much dairy. The next sentance when I asked him to explain low bone density (even though a runner ) he said I did not eat enough dairy!!!!

Well I called the local endo's office yesterday and now need to get a ride there to pick up another 24 hour urine container. At least as I am home bound it will be much easier to do. I always loved carying that container in a cooler around with me all day. Of course as an itinerant teacher I went to 5 different places each day!!
I have a dilemna now, I can't decide which pain med to take for the combo hip/neck/thoracic spine!!

Judy

rumpled

07-17-2008, 12:10 PM

Some people are skilled with a needle and some are not. I had to give myself shots for a long time and finally got the hang of it. It is an art. It just kinda bewilders me that he does not get it but he is a nice guy.

Podcasts are basically short informational webcasts or newscasts that you can download to a pc or mp3 player to listen to - on all sorts of topics from crafts to health to current news. I did one on bilateral adrenalectomies. The lady that hosts the cushings-help site coordinates them and posts them on itunes.

Ah the old double talk - you do TOO MUCH/NOT ENOUGH within minutes of each other... I know it well... mostly though, I was a liar even though my profession was completely based on compliance and being honest (my job was ethics and compliance) so it was galling to be called a liar all the time.

Ask if you can pick up several containers - and at the lab - get spares for the next test. that is what I do. Saves a trip. Drop one, pick up one or two. :)

Yes, the whole cyclical thing is famous...
Have you read this?
http://thejns.org/doi/full/10.3171/foc.2007.23.3.6
But of course, if I sent her my pathology, she would not accept it as it is hyperplasia, not an adenoma... but this made me so angry. I would have been dead now had I not been treated.

Judy4

07-17-2008, 12:29 PM

I had not read that article, thanks.
I had the petrosal sinus sampling in Atlanta. Of course the results had to be thrown out as the doc did not get all the way in on one side. I probably told you that story already.

That is funny , (although I know extrememly frustrating for you) that you worked on an ethics type job.

The first overnite dex test I did in Atlanta. The nurse practitioner, as I was not a patient of the doctor, told me to return the next morning at 8. She told me at 8:15 it would be too late.
I left my house super early, but lucky me, I got into a fender bender during rush hour traffic on the freeway. Of course I was watching the clock, totally stressed anyway . The guy I tapped walks back to me to see if I was ok as I never emerged from the car. He was a cop!!! My first accident. We got out and started talking and I explained my timing problem. He was in an unmarked car and was in the medical fraud division!!!!
I got to the dr. office at 8:12. I was then told by the receptionist that the lab opens at 8:30. I explained my urgency, my accident, and she told me it has never opened before that time. So, I had blood drawn at 8:40 by the time they got set up!!!
The nurse practitioner just said a little oh, I thought they opened at 8!!!

Well, I am off to the hospital where I had my surgery as my liver function tests were abnormal and I have to have them rechecked.
My local endo to get a urine container. I actually have one at home, but she is having a hard time believing cortisol was so non existant so wants to put the acid in first!!
Talk to you later
Judy

rumpled

07-18-2008, 09:16 AM

Oooh acid... yeah that will kill the results .... she knows what she is doing! Certain preservatives kill the cortisol so watch out. She should test cortisol binding globulin or see if you are cyclical first... did you keep the test cool? It could have been lab error too - I know I have seen a lot of that in my path to... um where I am.

OMG... to have the IPSS and have it be invalid... for all that... I had it done in UCLA with Dr McDucky (ok,not his real name) but boy was he cute... I think I must have drooled through the entire procedure. :D Mine showed the tumor was everywhere. Not so helpful. It is still there... pumping out the ACTH. Lovely. I named mine Fred. When I found I had a second at the last minute, I had a naming contest. Barney won - it was the prolactinoma and well, Barney is a bit of a boob. Fred is still around...

The fender bender stress would have thrown off your test results too... you would have gotten a jolt of ACTH from that... and then kept stressing for the test. Poor thing...

I hope the liver thing was just something you ate - and it was good!

Judy4

07-18-2008, 11:42 AM

Hi
I am good at keeping my pee cool!! I've had some practice!!! I am goiing to wait and do this one on sunday so it will be fresh on monday when I turn it in.

Why is Fred still with you?

The liver function tests are still a little off, but close enough to nomal for me. I was part of a pain research study while in the hospital for the hip replacement It was for IV acetaminifin which is not yet approved in the US. I got 1 gram by IV every 6 hours for 5 days after surgery. At the time (pre-OP apt.) it sounded like such a good deal to stay in the hospital 2 days longer. That was not a good thing!!! Actually only the last day was not a good thing. Anyway they run blood work every day and found my liver functions test were up at 10 days. At least I did get a check for $200.

Dr. F had written to Kaiser in Ga asking them to let me have the test in S. Cal. where docs had experience with them. Of course they said no and sent me to someone in Atlanta who did not know what he was doing.

I wake up with sinus pressure/pain every morning. I have been using nasonex samples from my primary for probably 8 months. I went to see him yesterday, I have never had allergies until this. They are supposed to be seasonal. He said in cases like mine he wanted to send me to an allergist. He must have seen the look of horror on my face as I said, no not another DDR. So Instead he gave me samples of 2 drugs to take, plus nasonex.
I was trying to explain that I don't have any other symptoms. These drugs are for sneezing, itching, coughing etc. I guess I am just not happy with another problem!!! I haven't taken the drugs either.

I have soo many aches and pains right now, I would be surprised if cortisol was high, yet my face is so broken out at 51!! For the last few months it has been so smooth.

OK did I complain enough.
Talk to you later
Judy

rumpled

07-20-2008, 03:51 PM

Oh yeah.. my hubby LOVES LOVES LOVES when I test... that brown jug in the fridge... makes him happy every time he sees it... that happy groan.

BTW - nasonex contains steroids... just so you know...

Ah cooperation and insurance companies... it took me a year (more) and lots of nasty letters to get my growth hormone stimulation test paid for... they told me once, get this, that it was not medically necessary and I about had the top of my head blow off - I was taking the meds and you cannot get the meds without taking the test so how in the world was the test NOT necessary??? Needless to say, the letter was so um, well my husbands asked me if I was sure I wanted to fax it as it was not nice...but I got my money as I was succinct and to the point even while I was pointing out that they were as smart as dirt.

Oh yeah, why do a test right? Just pay a fortune for doing it incorrect and then it is your record forever that you failed - not for your medical condition but the fact that they F-ed it up is never ever recorded...

Sorry about your face... my arms, back and face used to be horrid... I even took accutaine but it only kinda made things a bit better - but it was neat peeling off my lips three times a day. You would think that would be a hint a big hint - that even the most extreme meds still cannot cure symptoms... but nooooooooooooooooo.

Judy4

07-20-2008, 04:51 PM

My kids are the ones that love to see that jug in the fridge!!! They won't touch anything in there now!!

This should be an interesting one as I am in a no pee cycle. I have been known to overflow the jug. My body has had a problem with water/sodium balance for a while (years). I was going through this before surgery. Hiking a ton, eating a little and gaining weight every day. Then I also remembered when I had to have a uterine ultrasound last year. I drank the amount of water before getting there an threw in an extra on the drive. Nope did not have to pee. The guy doing it sent me out to drink another cup as nothing in the bladder. I drank 2 extra cups, called me back in , still not enough pee in the bladder . Finally on the third try it was still borderline, but he did the ultraound anyway.
I think my body is in that mode today. I can't wait to see how this one comes out!! At least I am going to bring it to my local endo so I know i will get the results.
I guess I will have to make an apt with Dr. F to get the salivary results as it has been 3 weeks since I asked. The no insurance thing is expensive, especially now that I am unemployed.

Speak of medical tests gone wrong. The second adrenal mri or ct (I forget) had a formula that the radiologist mentioned in the report. It stated that the value was under 50% so it could not be an adenoma. Well , of course , I took it upon myself to find the formula and calculate it. Well, I got 54%. Not trusting myself, I got my son to do it, he got 54%. Then I just gave my daughter the article and the numbers (not telling here where they belong, letting her figure it out) low and behold she got 54%.
Off to my primary care at Kaiser (I did have a math teacher at the school I worked at figure it out as well). Well my primary care doc got the same # I did. He called the radiology dept the next morning. The radiologist had to make a correction in the report and the head of radiology at Kaiser sent me a letter to apologize.
I have had so many of these instances that I have a hard time believing reports any more!! I need to learn how to read the things!!!

you must have missed me asking why you still have fred??
Talk to you soon
Judy

rumpled

07-21-2008, 11:06 AM

Oh sorry!
Fred grew back. Fred was scraped off and found to be ACTH secreting corticotroph hyperplasia... ahhhh hyperplasia... the words of doom. That meant that no doc here on the east coast would accept my pathology (puh! what is this ! you had unneccessary surgery!) and that there was a 99% chance Fred would grow back... Fred came back. Ba$tard. Of course, he refuses now to show up on film anymore, but my last ACTH was (drumroll) 1917 (4-27). I had an IPSS before the BLA to make sure he was there and he was there. The adrenal pathology was cortocotroph hyperplasia too - which shows it was pituitary source which had to shut up a few people here but still I am mostly treated like garbage. Can't they see that ALL I want is to feel better? If I had to pick a disease out of a book, it sure as heck would NOT be any of the ones I have... they all suck. No one understands them, you get no marathons, bracelets, sympathy or celebrity endorsements... no one hospital to go to to say fix me!... and when you do go to a doc, they just say I am fine, or it is mild... my...

I had to get a pathology report adjusted too... after I had my adrenals out, I was in a lot of pain, so I went for an abdominal CT scan. I said I was there POST OP after having my ADRENALS REMOVED. So what does the report say? "Adrenals unremarkable." I about flipped out. I was like, you have to be kidding me!!!!!!!!!! I was there after they were taken OUT!!!! Did anyone really LOOK at the films???? My PCP did not want to tell them anything but finally the gastro guy told them and they amended the report - sort of.
So now, they give me this "bull" on every CT now that the left one is gone, but the right one has residual tissue... but my cortisol levels are zero so how can that be??? I sent the films to the surgeon who laughed (he is famous and does celebrity surgeries so I pretty much trust him to do a great job plus he is experienced with adrenals which is why I went) and he gave me the all clear.

They do make mistakes. That is why I advise everyone to get copies and read your stuff - otherwise you would never know!

That pee thing is bad...
I had to avoid people today.. I am cranky... oooeee.

Judy4

07-21-2008, 01:28 PM

Before I forget, Are you planning on coming out west to see Dr. Friedman again? It would be great fun to meet and you are welcome to stay with me. Staying with me means you cannot be a neat freak as I live with the pig family.

Fred is a busy little sucker. I figure if I had anything on the pituaitary it is well hidden or unbelievably tiny. I thought maybe the growth hormone would help it become visable. I will see if anybody wants to do any more imaging.

OK your MRI story is unbelievable (actually not) that is just crazy. I can't believe any one even glanced at the films. These mistakes are all too common. The first time ,when this all started, I had a cardiologist tell me he did not recieve the lab results is when I started getting copies of everything. One report had so many things misspelled and I was looking them all up trying to figure out what they meant. When I went to my wonderful Kaiser primary, he interrpreted all the misspellings for me.

Well I started out with little pee yesterday. It just about has room for a drop more today. I am done and actually prayed that it would not overflow!!!

I saw last nite that Dr. F had an opening for this wed eve. I wonder if I need to go there to get the salivary results. I don't like going to him and local endo at the same time and I have an apt with her next wed. But , I don't have the results for her. Such a dilemna. Maybe this weeks apt with him will have been taken.
Gotta get ready to walk to the pool and attempt to swim again, then off to my spine surgeon.
Judy

rumpled

07-22-2008, 10:57 AM

I don't plan on seeing him in the near future... while you feel bad about two endos... right now I see THREE. Hah. I see one locally just in case I drop dead in the streets but I don't trust her with my life... I see the guy who I consider my main guy in Pittsburgh, Gordon, as he is as smart as Friedman and has even caught new stuff! and I also see another endo at Columbia but she only tests like oh 3-4 things when she sends out labs and there is like 11 things wrong with me so... that is not enough but Columbia was doing my neuro stuff so I need someone there in case they try to kill me er treat me again.

Fred likes to hide. I have a mondo huge lymph node on my neck that actually is visable just looking at me and when they operated on my thyroid and went to take it out - that sucker HID. It is named houdini now. The doc bruised my neck looking for it, sat me up and did al he could... he was so frantic. He took out other enlarged nodes - but that one went out for lunch. A friend of mine photoshopped the bruise to the other side and with the scar well - it made a swell smiley - bruise eyes and scar mouth... I used that as my avatar for a while but people did not like it... it is my pic over at the cush boards on my profile. Sure you want me to come to your house? I am sick in the head?

You know, you can ask for 2 or 3 jugs... they are free... I know people that fill up 5. Or you can fill up additional clean jars and bring them in. They only test a small amount - they just need the entire volume. With that much, sounds like your ADH is off too.

Too bad Lynn is not skilled at the PC... then people would get their results and patients would be happier. People have tried to help. Swimming ah, nice. Surgeon, not so nice.

Judy4

07-23-2008, 05:28 PM

Hi
I have been abnormal for years, so don't worry about visiting!!
Dr. F wants me to have an endo local and my primary said please get one, if I ended up in the hospital and they called him he wouldn't have a clue what to do.
I have an apt with her next WEd. and I don't like to see them both at the same time, but it seems like it works out that way. He had a cancellation and an opening for tonite. I was debating about it on MOn then realized the last time I did that my chart was not there. He told me not to worry as he knew me like the back of his hand. As I want results, I decided not to go.

What is wrong with people that fill up 5 jugs????
With me it could be only 1/3 of a jug or overflowing. I have wondered about ADH problems as well.

Do you know if any endocrine issues cause arthritis?
It was severe in my hip. I know i have significant arthritis in my knees. After my visit to my spine surgeon and a thoracic x-ray, I have significant arthritis and as he said much more than I should have at this age. Not to mention my brand new shoulder pain.

We all had the stomach bug for the last few days. I feel almost normal now. Well, I am never normal, just back to the usual.
How often do they check for Houdini with imaging? How much cortisol do you take each day?
My local endo says the hypopit is probably autoimmune so I don't think she will look for anything. I'll have to ask DR. F. Lately , I have been dealing with my spine , neck pain which has been at the front of the list.

Well, I am back to laundry , my husband gives the kids towels for their puking and used every towel in the house. I can't imagine how he washed them, so I am rewashing.
Hope you are having a more exciting day than me.
Judy

Naominjw

07-23-2008, 08:11 PM

Do you know if any endocrine issues cause arthritis?

I think that the low hormones in general cause a metabolic, inflammatory, and immune profile like in a person with advanced age. My daughter had not only osteoporosis at 16, but degenerative changes in her spine. :-( And they had kept calling her pain "mental".... and I am so sorry... the osteoporosis is reversible. The spine is not. All the orthopedists can do at this point he says is to monitor it to see if it gets worse.

A lot of the hormones have anti-inflammatory properties. So... it makes sense that low hormones= inflammation=early arthritis. Stress does the same thing--causes inflammation... and low hormones makes everyday life stressful!

-"Naomi"

Judy4

07-24-2008, 12:10 AM

Thanks for your insight Niaomi
I have had a few Dr.s, Dr. Friedman being one that told me I have a lot more stress than the average person. It wasn't until things got really bad at work last year that I believed stress could cause real health problems.
Dumb of me as I had high cortisol for a few years.

I guess I have to get on something stronger for osteopenia(if it hasn't crossed the line to osteoporosis yet) as fosomax is not doing it for me.

When I was researching symptoms of low growth hormone I found one research article on rats. It concluded that a lack of growth hormone in adults causes a rapid acceleration of the degeneration process. Therefore loss of cartilage. Although Dr.s have not heard of it in low, but instead in high levels of growth hormone, I still believe that was my problem.Or at least part of it.

Judy

Naominjw

07-24-2008, 09:49 AM

I guess I have to get on something stronger for osteopenia(if it hasn't crossed the line to osteoporosis yet) as fosomax is not doing it for me.

My daughter's bone density has significantly thickened, bordering on normal! The doctors had put her on food supplements and of course the hormones, and they feel it is the growth hormone combined with youth that helped the most.

Maybe part of it is also that since she feels better she can exercise more.

I read a study once comparing Fosamax with 5 jarring jumps once a day (just jump up and down with a thud on your feet you feel through your body). The Jumping worked as well as the Fosamax with no side-effects.

However, I have no idea what the dosage of Fosamx was, or any other variables... but I go ahead and do the jumps when I think of it even though I don't have thin bones... I want to keep it that way!

-"naomi"

rumpled

07-24-2008, 11:11 AM

Oooh I will thump... thanks!
I have very thick bones but they do not think it is good bone. There are quite a few endocrine issues that will have pain like arthritis - cushing's is one as the inflammation is something extraordinary plus the cortisol eats bone. Growth hormone deficiency would be another and feels the same and weak muscles would not help. There are also bone issues - a friend of mine has something like Fibrous Displasia which usually has cafe au lait spots and weak bones and there is McCune Albright. I know a lady with FD that is severe and disfiguring, and advancing... she probably will not have a long life with it. One is associated with a pituitary tumor but I cannot remember which one. Ask for the IV biphosphates - especially if your spine is involved. It will be the best. One hour - all done. Except for check in and all that. As long as you do not have jaw issues, you should be fine.

As for the 5 jugs... yes... and can you believe most docs do not pick up on it? Nor do the labs mix or sample ALL the jugs but just take a sample from one? Thus defeating the whole test? Poor lab handling kept me from getting good results for a long time but now I speak up. They hate me but I want good results for my freaking money.

I used to have a very stressful job... searching for terrorists and money launderers. Everyone was always angling to withhold information. Deadlines. And if my group messed up, the fines could be potentially in the hundreds of millions of dollars and I was already cleaning up some else's mess so we were under a microscope for everything and I was working 10 to 12 hour days...but it was interesting.