Message Boards http://cushings.invisionzone.com/index.php Sun, 22 Nov 2009 10:15:02 -0500 60 http://cushings.invisionzone.com/index.php?showtopic=44531
Anyways, I just need someone to hit me upside the head and get me out of this funk. I am heading to pick up my mom in a few hours. Then I have to start taking methylprednisone for the IPSS because I am highly allergic to contrast dye. Will the steroids mess with the results?

Well, I would appreciate some extra prayers tomorrow morning. You can never have too many! I am not taking my computer with me as it has already died three times and had to be revived, and I can't afford a new one right now! I will try and update everyone when I get back on Tues. or Wed. Thanks for all your support though this! I don't know what I would have done without you guys!

Alicia]]> Sun, 22 Nov 2009 08:32:40 -0500 http://cushings.invisionzone.com/index.php?showtopic=44531 http://cushings.invisionzone.com/index.php?showtopic=44530
Ive been reading about these polyps, it mentions you can have it with high Estrogen (mines low)? (or is it all the time could it be cycling with cushings if i have it?)

The other thing it mentions is common after child birth Ive got no kids?!

Ive got to have it removed but also which is weird my sister has just been refered for 3 big ones in her cervix...Just seems to freaky to be both of us.

I was on hospital last month with AI symptoms and infection and my sister was in there for the same thing a month before that!!

SO i was wondering if it could be due to Cushings, hypopituitary or thyroid etc..

X

]]> Sun, 22 Nov 2009 05:41:07 -0500 http://cushings.invisionzone.com/index.php?showtopic=44530 http://cushings.invisionzone.com/index.php?showtopic=44529
I've had symptoms of a pheo for several years now. It started with a reaction I had to compazine (compazine is a no-no with pheos) that left me a bundle of nerves for several months. I was losing weight, couldn't eat, trembling, blood pressure and hr up. I felt awful, but I was told it was anxiety and given benzos. The symptoms calmed a bit,but then the Cushing's symptoms started in earnest. Weight gain, hirsutism, acne, fatigue. Then, a few years later, after my dex suppression test last January, the other symptoms started again, but this time they were...different. Constant elevated heart rated and slightly raised bp, punctuated by episodes of extreme rapid heartrate, bp spikes, and this weird feeling of weakness/faintness. I get these feelings of being on edge and feeling faint at the same time, and very, very weak. And the fatigue, oh, the fatigue.

I've been so busy worrying about my failed pit surgery, that I think I've failed to see the forest for the trees. I had an episode in the middle of the night last week that scared me, though. I was trying to fall asleep at 3am and I felt what seemed like an explosion in my left flank (I was lying on my left side at the time.) I've had this happen before, but it was extra painful this time and the area was still sore the next day. The weird thing is, after this "explosion", I became very shaky and weak and it lasted 2 days. My pulse was racing and I had that weak/shaky/sick/on edge feeling. And when I say "on edge", I feel like I'm constantly at the top of a roller coaster, ready to plunge down over the top. This faded after a few days, but my hr and bp are still elevated.

I had some pheo tests last Jan and Feb and some were actually elevated., but they were brushed off as stress because they were only slightly elevated. My urine norepinephrine was 86 (normal is 15 to 80), my urine dopamine was 438 (normal is 65 to 400) and my urine epinephrine was normal at 17 (normal is 0-20.) My urine metanephrines were slightly elevated, but my serum free metanephrine and normetanephrines were normal.

I hope I'm freaking for nothing, but I'm not so sure. Does anyone know what to make of this? Help!

Melissa B.]]> Sun, 22 Nov 2009 00:10:30 -0500 http://cushings.invisionzone.com/index.php?showtopic=44529 http://cushings.invisionzone.com/index.php?showtopic=44528 I laid out all of my tests for the past 8 months in front of him and we muddled through them together.


[*]

• My t3 and t4 levels are all on the high side and my TSH has bottomed out so my thyroid replacements are being lowered by half.
• I have to estrogen and no period so I am going on estrogel and some sort of progesterone.
• My Vit D levels are still really low even with supplementation, but he told me to just keep at it and get sun whenever I can.
• My B12 is very low and he ordered a nasal mist for me but my local pharmacy doesn't know anything about it.
  
  • My testosterone was low and so he asked me to be in their study. (Anyone here done it and how much is involved?)
  • I'm waiting for GH results.
  • He says that cushing's is definately gone! My numbers are still so low that he said there was a zero percent chance I had cushings.
  • I asked him about the lack of weight loss and he said to wait for the GH result
  s before we worried about that.
  
  The GH stim test was really not bad at all. I did get nauseated half way through, but Dr. Mazouz had Zofran on hand and I was fine after that.
  
  So now I play the waiting game and see what the test results tell. At least I've got some hormones to try and see if they help the aches and pains.
  
  Another interesting thing was Dr. F asked me how big my tumor was and I told him 10mm (because that is what I was told and was in my post-op report) and he asked how much of my pit was left. I told him about 60% because that is what Dr. McC told my husband. Dr. F told me that I am either wrong about the size of the tumor or about how much pit I have left, because 10mm is too big to have left that much pit intact! Should I talk to Dr. McC about that? Would it show up on my most recent MRI?
  
  Another funny story-
  My sister came to LA with me and we were sitting in Dr. Mazouz's office and asked him his original nationality. He began explaining that he was from a little country in North Africa name Tunisia. My sister and I started laughing and said, "well here is a fellow countryman.". My sister was born in Tunisia when my dad was stationed there in the Army 25 years ago. Dr. Mazouz was tickled pink that we not only knew where Tunisia was but that we had been there to visit recently. It is truly a small world!!

[/list]]]> Sat, 21 Nov 2009 23:42:04 -0500 http://cushings.invisionzone.com/index.php?showtopic=44528 http://cushings.invisionzone.com/index.php?showtopic=44527


]]> Sat, 21 Nov 2009 20:03:05 -0500 http://cushings.invisionzone.com/index.php?showtopic=44527 http://cushings.invisionzone.com/index.php?showtopic=44526 I'm due to get a second opinion from another consultant. My question to everybody is can you see the doctor you have got the second opinion from if you prefer them or do you have to see the doctor you saw in the first place??
I just wondered because the endo I am seeing is a Professor and his speciality is in cushings? I wondered if they were allowed or is there some protocol that stops them from seeing you.

Thanks for reading,

Dave.]]> Sat, 21 Nov 2009 17:41:31 -0500 http://cushings.invisionzone.com/index.php?showtopic=44526 http://cushings.invisionzone.com/index.php?showtopic=44525
I believe I have cushings and so does my GP but my health authority are really dragging their heels diagnosing it, being 13 months since I first noticed the hump on the back of my neck.

A long story

I first went to my local accident and emergency (September 2008) after noticing the hump as it looked so unusual and had never even heard of cushings... The doctors there said I had a lypomer (Fatty deposit) on the back of my neck and told be to visit my GP.

She reffered me to see a surgeon thinking that I had a Lipoma. I had an MRI scan some weeks later and then went back to see him again on Chritsmas eve 2008 thinking I was going to find out what it was. Me and my family went and were told that it was probably just fatty tissue on the back of the neck and that it was a cosmetic issue and that I would have to live with the hump.

A couple of weeks later I receieved a follow up letter from the Doctor saying that after reviewing his notes wanted me to see an Endocrine specialist to rule out a rare condition called Cushings.

My GP instructed me to have a blood test (Not suppresion test) for the Endocrine doctor to review the results at my appointment which was a couple of months later. Along with the hump I was experiencing alot of the other symptoms associated with Cushings.

* Weight gain around the lower abdomen
* Hair growth/under chin
* Muscle weakness
* Purple stretch marks (Breasts, stomach and hips)
* Excessive sweating
* Missed periods
* Skin Boils
* Tinnitus (Not sure if this is connected)

When I went for the appointment I was told that my Cortisol level was slightly raised and was then instructed to do the low dose Dexamethasone Suppression Test and 24-hour urinary free cortisol level test. Both would then be reviewed at my next appointment 2 months later.

My next appointment came round and again I was expecting to find out what was going on with me. Went to the appointment and the registrar was reading my notes and said you haven't had the Dexamethasone Suppression Test or the Urine test even though I had. I found out that the Urine test was disposed of as it was not seen necessary and not tested (great carrying around a big bottle of urine for 24hours for nothing) and that my blood test had been lost. After complaining to the hospital complaints department I did the low dose Dexamethasone Suppression Test again over night and come back in the morning for the blood test for my doctor to review the results later that day.

Later that day I recieved a phone call from the doctor saying that "The test results came back normal and their ruling out Cushings for the minute and that to come back in January 2010" 6 moths later.

As of late I am still suffering with the symptoms listed above and some have got a little bit worse. I have been tested for PCOS which has come back negative.

I still believe that I have Cushings and so does my GP who I visited recently to try and get the Hospital to move things on but feeling helpless and that no-one was helping getting to the bottom of my health issues I contacted my local MP who is now in dealings with the Health Authority now to get them to pull their finger out as he is discusted with how I have been treated.

If I have got it I just want to get on with treatment. If anyone has any advice or help on getting this correctly diagnosed it would be greatly appreciated.]]> Sat, 21 Nov 2009 13:49:42 -0500 http://cushings.invisionzone.com/index.php?showtopic=44525 http://cushings.invisionzone.com/index.php?showtopic=44524 How long can you store urine specimen in the fridge? I have one completed one in the freezer waiting to be Fed Exed to Esoterix and another in the fridge because there is no room in the freezer for it and was wondering how long it will keep in the fridge? I plan on freezing it before sending it off to Esoterix but I need to wait until I have room after I ship the other out. Sat, 21 Nov 2009 12:55:38 -0500 http://cushings.invisionzone.com/index.php?showtopic=44524 http://cushings.invisionzone.com/index.php?showtopic=44523

http://www.endocrinology.org/meetings/2007...urseBooklet.pdf


XX]]> Sat, 21 Nov 2009 12:42:51 -0500 http://cushings.invisionzone.com/index.php?showtopic=44523 http://cushings.invisionzone.com/index.php?showtopic=44522 HI all!! I had an appointment with my endo last week and he prescribed a second UFC. The first UFC was wayyyyy high and he told me if this come back high also that he would diagnose me with Cushings. OK--so now the story. I have had a previous brain tumor and researching on the internet yesterday I see that it can cause another tumor that can cause Cushings--so if this is the case it would be a pituitary tumor. The name of my previous tumor is gangliocytoma and I have never told the doctor this name--the formal name is Lhermitte Duclos Disease. The gangliocytoma was partially resected and is slowly growing back. I also am hydrocephalic and have a shunt as a result of all of this. Also, about 25 years ago I was diagnosed with hyperprolactinemia because of a breat discharge. I keep forgetting to tell the endo about this. I am minimally brain damaged because of the original tumor. Now the question---would I have to have surgery if pituitary Cushings is diagnosed? I mean, can I choose not to? I am 53 years old and I am obese, have the hump and have anxiety and depression which are medicated. If Cushings is diagnoosed I have had it for probably 20 years and I really can not tell what symptoms are Cushings and which are brain damage. Can I choose to live this way? Thanks for the feedback. Karen Sat, 21 Nov 2009 10:55:00 -0500 http://cushings.invisionzone.com/index.php?showtopic=44522 http://cushings.invisionzone.com/index.php?showtopic=44521
BUT, I was still having the brain fog, BAD! I felt like it was even worse than with Cushing's. I've been having a hard time focusing on things. Nothing holds my attention for long. I come on here and answer a few things for people, then I leave. Then I come back later. My thoughts flit around and I have felt kind of restless. Kind of bored, but no energy to do things either.

I've been dragging. All of my hormones are in balance now, and at really good levels, yet I have been feeling blah. I would like to work out, but I just have not had the gumption to do it. I want to get up early, I want to be organized again, etc., but I can't seem to make it happen.

I've asked others about their hydro and their routine. Most people say they take their morning hydro and get up and going about half an hour or so later. I don't! I go right back to bed and sleep for hours! No matter how much hydro I take, I just sleep. When I wake up, I usually feel like I'm dragging. I'm not sleepy, just blah, no energy.

So, Dr. H said it's not uncommon for us to have ADD type issues after all of our pit problems. He said Adderal is better for ADD. He didn't prescribe it for me though. He wanted me to see a psychiatrist for an evaluation and let them prescribe it. I called my PCP to see if they diagnosed it. They do, so I went there. I usually see the nurse practitioner there. She is who I seen this time.

She said she doesn't like Adderal that well, and she was afraid it might mess up the other meds I take (a boat load of them). She thought Ritilin would work better. She said over the next 2 or 3 weeks to see what works best for me. She said I could take 1 in the morning and one in the afternoon, or 2 in the morning, and maybe none or one in the afternoon. Then I go back and she will give me a script based on what I need.

Today is the first day I have taken it, and I love it! I took my meds and laid back down, but I was awake. I just started feeling more and more awake! I'm feeling alive! LOL! I don't feel hyper, just like I have some energy and I feel more clarity of mind. I've got the energy to make things happen now. I can't wait to get started on a routine of getting up and exercising, reading my bible, eating breakfast, getting the kids up and starting school on a schedule! LOL! The kids are gonna love me! LOL!

I use to be so scheduled. There's good and bad to that. It's good for routine sake. I like being flexible to an extent. If something happens that I wasn't expecting, I don't get bent out of shape. We just go with the flow. I hate not being structured though. Our schedule is more like whatever, whenever.

I feel much happier today. In my mind, I battled asking myself if it was depression, or ADD type stuff. I didn't really think it was depression. I feel happy that I'm feeling better. Andy's going to lose his job, but it's not really depressing for me. I've been wanting him to get a job somewhere else for years, so it's exciting for me! LOL! This forces him to do it! I can't wait to see what God has in store for us next. I just lacked that energy and motivation to do things. I was physically dragging so bad. I think this was just the thing I was missing! I have been on antidepressants before. At one time, they worked. The last time I was on them, I didn't see it doing anything for me. I wasn't really depressed, it was ADD instead!

So, if you think you feel depressed, consider the symptoms of ADD. Some of them are pretty close in similarity. You might need ADD meds instead of an antidepressant. I'll be sure to follow up on this thread. It's only my first day, so things might change. I hope not, because I like this!

Hugs,
Gracie
]]> Sat, 21 Nov 2009 10:39:15 -0500 http://cushings.invisionzone.com/index.php?showtopic=44521 http://cushings.invisionzone.com/index.php?showtopic=44520

She sent me to get a whole bunch of different tests. I took them all last week and called and tried to pick up the results today, but I only had 4 tests come back. I don't know how long it will take to get the other tests..


Here is what my results said

LIPID PROFILE
Cholesterol 136 Reference 0-200
Triglycerides 135 Reference 40-197
HDL 35 Reference 35-77
LDL Calculated 74 Reference 66-178
VLDL Calculated 27 Reference 0-40

(These all got better last month they were high and low, and now they are in the normal range)

GLUCOSE TOLERANCE 2 HOUR
Glucose, Fasting 113 HIGH Reference 60-110
Glucose, 1hr 196 Reference 60-199
Glucose, 2hr 134 Reference 60-139

TSH/REFLEX FREE T4
TSH 3.21 Reference 0.34-4.82

CREARININE 24 HR
Creatinine, Urine 142.3 HIGH Reference 30.0-125.0
Creatinine, 24 HR 2135 HIGH Reference 800-1800
Total Volume 1500



Hopefully I will get the other test results Monday morning, so that I can share the other tests with you.

Is it possible to have a thyroid issue and have cushings, or cushings symptoms? I have just had these issues for over 10 years now, and they are getting worse and worse. When I first started to get these symptoms I started getting Diabetes tests and Thyroid checks almost yearly, and never had anything showed up until last year. They noticed that I was having High blood sugar levels. I am almost constantly sick. I don't want to be on antibiotics anymore, but it seems the reoccuring ear infections that I am having I have to be put on them because they get so bad, and my body can't fight it off itself.

Since last October things have gotten worse and worse, and I couldn't work anymore because I was getting sick all the time. I filed for disability in March of '09 because I needed health insurance and couldn't afford any, and was approved three months later. (Must have had a lot of doctors on my side) I just want to get better find out what is wrong so I can go back to work and school. Now this endocrinologist that I am seeing, is putting it off like its not a big deal. I am so upset. I don't honestly know what is wrong, all I know is I am sick of it all, and I am at my wits end.

]]> Sat, 21 Nov 2009 02:17:01 -0500 http://cushings.invisionzone.com/index.php?showtopic=44520 http://cushings.invisionzone.com/index.php?showtopic=44519 So they were supposed to send my images to Dr. McC and Dr. F and have them there in time for my appointment on Wednesday.... No dice. I called yesterday and they told me they had been trying to send 2 sets of images that DON'T EVEN EXIST! One set in October and another set in August. I had no such images done. My last ones in August were done at OHSU.... Mmm, OK. Then they said, oh, we weren't planning on sending out the images done on 11/14. Um, OK. Those were the important ones, but I digress. So I told them they needed to send them out ASAP. So they said they'd send them out FedEX over night. Okedokee. Told them to email me the tracking numbers. Nothing has shown up in my email. SO I call them this morning, oh, they tried to email it 3 times and it's been bounced back but they were overnighted FedEx. Um, OK, sure. She proceeds to give me the tracking numbers over the phone and when I looked them up today online, THEY DON'T EXIST! They're not in the system anywhere. So, who screwed up and who's lying? I don't know, but they're seriously messed up there....]]> Fri, 20 Nov 2009 23:45:08 -0500 http://cushings.invisionzone.com/index.php?showtopic=44519 http://cushings.invisionzone.com/index.php?showtopic=44518 I am just trying to line up back-up plans because I am always planning for the worst. Like my Endo will tell me I'm fat and lazy.
If I am not pleased with him can I ask him to refer me to another Endo of my choice? I have found two within an hour of my home that specialize in Cushing's. Can he refer me or does my PCP have to?
]]> Fri, 20 Nov 2009 23:25:03 -0500 http://cushings.invisionzone.com/index.php?showtopic=44518 http://cushings.invisionzone.com/index.php?showtopic=44517 Fri, 20 Nov 2009 23:00:18 -0500 http://cushings.invisionzone.com/index.php?showtopic=44517 http://cushings.invisionzone.com/index.php?showtopic=44516 Hi..my name is Adrienne and I am pretty new to this group but not new to waiting to get into doctors and waiting for help. I have been sick for 3 years (the worst being the last year). I could be the poster child for cushings and seem to get sicker by the day. I live alone...my kids range from age 19-26yrs. I am tired of emergency rooms, blood tests, urine tests, cat scans etc....supression tests, I had an mri but it was not conclusive because the strength of the mri that i needed could not be done because I have a greenfield filter to prevent blood clots.They did find an adrenal adenoma on the cat scan but seem to be ignoring it. The last comments from my endo is that he is confused because my 2 overnight supression test were extremely high--25 and 26 but my 2 24hr urines were only slightly high so he wants to do more testing. I am currently on government ins. (I live in phoenix, az) so I cant travel too far...I am tired of having no answers and no quality of life...if anyone is going thru this please tell me how you cope..... Fri, 20 Nov 2009 19:39:22 -0500 http://cushings.invisionzone.com/index.php?showtopic=44516 http://cushings.invisionzone.com/index.php?showtopic=44515
Here's the strange part: My tumor has never shown up clearly on an MRI despite having a very high IPSS that was unequivocal for the right side.. I had a first pit surgery in which no actual tumor was removed. Dr. P spent a few minutes looking at my MRI and is pretty sure that the entire right half of my pituitary is tumor! Its no wonder I'm so messed up. Dr. Carrau with be doing the surgery with him, so I'm pretty excited about that, too.

I think Gina might be having surgery with Dr. P around the same time. Hey Gina - we can be surgery buddies!

Hugs all,
Melissa B.]]> Fri, 20 Nov 2009 19:35:41 -0500 http://cushings.invisionzone.com/index.php?showtopic=44515 http://cushings.invisionzone.com/index.php?showtopic=44514
Thanks,
Lara]]> Fri, 20 Nov 2009 19:32:19 -0500 http://cushings.invisionzone.com/index.php?showtopic=44514 http://cushings.invisionzone.com/index.php?showtopic=44513 Hello All! I am here again to get your guys opinion about some things.. I was wondering how many of you have struggled with depression after Cushing’s.. I find myself feeling down all the time.. not wanting to do anything but sleep and always have negative thoughts. I also expericened this with Cushing’s because of the hormone imbalance.. Although most of my symptoms have somewhat been relieved.. This still seems to linger. I am almost 8 months post op. If anyone has any suggestions please let me know! Do anti-depressants really work? I really don’t want to start taking them. I am trying to prepare myself for next year.. I will be moving into an apartment by myself… and I do not want my depression to continue. Any thoughts, experiences or comments are welcome! Fri, 20 Nov 2009 19:21:32 -0500 http://cushings.invisionzone.com/index.php?showtopic=44513 http://cushings.invisionzone.com/index.php?showtopic=44512
I had tuns of results and these are what came back abnormal.

My creatinine levels in my urine are high, but the cortisol test has not come back yet.
creatinine 142.3 mg/dL range 30.0-125.0
creatinine 24 hour 2135 mg/24hr range 800-1800

LIPID profile is completely normal ranges. (though the last time they were checked they were high)

Glucose Tolerance Fasting blood sugar was high 113
1 hour was 196
two hour was 134

TSH/REFLEX FREE T4

TSH 3.21 Range 0.34-4.82


I do know on the past test results that my platelet count was almost over the limit and my Globulin level was high but the Albumin level was normal.

I really don't know what creatinine is, and I have no idea to why it is high. When I first saw it I thought it was the cortisol test, and I was like finally maybe they will listen to me now, but then I realized it wasn't cortisol and that that test has not been sent to the records yet.

Please if any of you have anything to tell me about it, or if any of you have had high creatinine levels, please let me know!

Thanks
Cheryln]]> Fri, 20 Nov 2009 17:28:58 -0500 http://cushings.invisionzone.com/index.php?showtopic=44512