Response to Adrenal info Jimlow, AR etc....

[ShannieK]

Hi everyone. Thanks so much for all of your responses to my news down below.  I haven't been feeling my best, so have been off of here, for alittle bit.  I went for my MRI today of my pituitary gland, and they didn't do my adrenals after all, I guess the dr, is reconsidering and may want to do a CAT scan of those instead.  I have finished all of my new blood work and 24 hour urine again, and am just sitting back waiting for the answers.  It's like you said Jimlow, it will be so nice to end with the tests and start with some treatment.  I agree, my dr. seems to really be a good one, she has run so many tests and is so cautious about treatments and just really seems to understand what's going on.  She also has mentioned that adrenal dysfunction is extremely hard to diagnose, but is sticking with me until she finds out what's going on.  I do hope my pituitary is fine, that's one route, I don't want to take. Jimlow, have you heard anything on your test yet?  hope it comes back fine.  AR you had asked what happened last year to me.  Well it all started in October of last year.  I was just fine one minute, no health issues what so ever, no meds, nothing, out of the blue, I started getting real bad headaches, in one day it was followed my diarrea (diarrhea), and nausea.  By day two, I was so dizzy and lighheaded I couldn't even stand up, along with the other symptoms, by day three, I was having panic attacks, heart palpitations, sweating, fever,and my hair started falling out in clumps.  By the next day when I finally got in to see the dr, I was sitting on the table and my whole right side

[ShannieK]

of my body had gone numb, I also was very out of it, could not focus on anything, had forgotten how to drive my car or anything, my vision had gotten so bad also that I could hardly see without running into everything.  Dr's were stumped, every test they took came back normal, including my TSH of 3.9, true, alittle high, but not worth such the outcome that I was having.  Dr's tested my antibodies, which came back positive, and diagnosed me with Hashi's.  My endo now, thinks that it was more of an adrenal crisis, and that they just happen to stumble onto the hashi's.  She tells me now, that my thyroid is still functioning real well, and my levels are great, but I still feel so terrible.  She was the first one to say, Maybe it's something else.  Now she's checking.  I'll keep you all posted.  Jimlow, let us know when you get your results. my best to everyone. Shannon

[Jimlow]

Sorry ladies, my test results haven't come in yet. I'm so anxious to get them, I've not slept good the past couple nights. This particular test must take longer because my thyroid ones usually showed up the next day or second day after blood draw.
I get my results online, via a secure page on HealthCheck's website. I have a feeling they'll be posted sometime tomorrow. I'm looking as foward to seeing TNT's results as I am my own! I feel yours may be posted by tommorow too TNT, if not, by Saturday probably.
Thanks TNT, Shannon and Ar, for all the inspiring posts. We're all in kind of a struggle but if we stay encouraged and have faith, we'll see better days just ahead. I almost feel guilty about a post yesterday I directed at "bad" Dr.s but it tugs at my heart to see people mistreated! Dr.s looking in at these posts probably get offended but what do they expect us to do? We cannot roll over and play dead, we have jobs, family and life itself depending on us. Dr's who defend other Dr.s simply because they are in the same field/profession, in my opinion, are partners in their bad deeds and will get the same reward. This sounds harsh but it would be just as bad for a good Cop to defend a corrupt one, or a good Minister to defend the actions of a bad one. (How did I get off on this?!)
I'm glad so many others are venting their frustrations and I'm not the only one. HAIL TO GOOD DOCTORS!, THEY DESERVE A BIG PAT ON THE BACK! YOu have a good one Shannon, I'm so glad for you!

[ar1281a]

Shannon, I'm glad you have found a great Dr!!!!! mmmm your symptoms make me thing about my current symptoms. I'm finally off the prednisone, but I need to wait for a little while to be able to do the other tests that my endo mentioned. Not sure how long, didn't ask! I can't believe it!!! I guess a couple of weeks after the prednisone was stopped. BTW, I found a medical article yesterday on the internet that states that 20% of people with adrenal insufficiency gets "normal" results on the 24-hr urine test. That's an interesting fact I think as I'll be probably going thru the same tests you're currently taking Shannon. However, I think I'll ask for the CT scan/MRI as my Dr hasn't mentioned it. Why did they decide to do a Cat scan instead of the MRI? I really hope that you start to feel better soon Shannon. It's not fun to feel sick all the time, but at least you found a Dr that's trying to get to the botton of this.

JimLow, the adrenal AB test takes a bit longer than the regular Thyroid test. i have no idea why, maybe it's a special test or something like that. My understanding is that the lab sends it to other lab (in my lab's case to Mayo clinic) and that adds time. It's special equipment and I guess it's too expensive and the test might not be very popular - like a CBC w/diff for example- that's not cost effective. In my case, my endo called directly to find out the result instead of waiting for the report as she really wanted to rule out the AB piece.

Hang in there! let's continue with faith thru this path to recovery soon!

[ShannieK]

Just a quick note, When I had my adrenal antibodies checked it took 2 weeks for my results to come in.  Don't let that discourage you, but that is what the lab told me when I had mine done.  All my other labs came in just a couple days later, but my antibody testing took 13 days to come in.  Hang in there.  Again, not to discourage, but I want you to be prepared.  I wish ya luck.  Shannon

[ShannieK]

Hi, I had the MRI of the pituitary, which was kind of scary.  I didn't care for it, but if it helps.  I was told today that the CAT scan is a better tool to diagnose troubled adrenal glands.  Didn't really question it, I should of, but they said, If they did the MRI, the dr. would probably send me anyway for the CAT scan afterwards, and all the tests combined would really cost me a fortune.  Who keeps track of medical bills anymore anyway!!!!  I have so many, I almost get one every day.  I've learned not to stress on them, I just want to feel better.  AR, Do you have alot of those symptoms too?  My dr. said headaches and diarrea (diarrhea) are signs to really look for, the kind that just never go away.  I have those all the time.  I chaulked them up to bouncing to hyper symptoms with my Hashi's, she tend to think it's the Primary Adrenal insuff.  Hope you have luck with the same tests.  I'm nervous to find out about my pituitary one.

[ar1281a]

Yes, headaches almost everyday. Still somehow dizzy/lightheaded (not as bad as it use to be), orthostatic hypotension, but a bit better, not as bad hypotension as before but still low (did your Dr check this? or mentioned?), I get the tingling/numbness (very mild)and elevated heart rate. I'm starting to feel better now that I'm off the prednisone, by better I mean that my BP is decent so I can start doing things, before I could barely make it out of bed -only to go to the bathroon- as I was just soooo dizzy that could barely walk. I read somewhere that under prednisone sometimes (rare but can happen) your adrenals can stop producing or not produce enough of the other hormones -besides the cortisol- that they're suppose to produce. I don't know, I just want to know that I'm not going to get dizzy anymore, get my BP under control -and thus my heart rate- and get rid of these bad headaches. And some days I feel better -and think I'm on my way to feel better- and some days all of the sudden w/o a warning I feel very bad again. I don't know if it happens to you, but in my case as these "dizzy episodes" are unpredictable, those days that I feel better that I can go out and do things, I'm just terrified that any of these episodes happen when I'm in the middle of something...

Keep us posted and I'm sure your Dr will find what's wrong with you soon. Good luck!

[ShannieK]

Hi, Can so much relate to those dizzy spells, it's nice to talk to someone who knows what that is like.  I hate those episodes and as you have noted, who knows when it will happen, there are days I cannot get out of bed because it is so bad, and sometimes, when I'm out and about and don't think I can get home.  I do not have low blood pressure, which is confusing to my endo, she said that is quite common with people with Adrenal Insuff.  however she said, I am just overall proving not to be the norm.  In fact, I have high blood pressure, which is not even going down with the beta blockers they have me on.  My endo, I think, I mentioned, has ran another test on me to see about whatever it is that controls salt and water balance in my body, not sure what it is, but is checking it.  Still no word on when I will get my CAT scan, hopefully soon.  Endo says she cannot start treatment for me until she sees that picture of them.  I really hope they find what is going on with you soon, Have heard so many times how hard adrenal dysfunction is to diagnose, hopefully you get some answers.  I have had ACTH and Cortisol, blood and urine, tested 3 times so far, often they are off, and often my cortisol comes back normal, but ACTH is always high, I'm just praying it's not the pituitary.  Good luck

[tina999]

Hi you guys,

I am so, so , so glad to have found you guys.   I went in for routine bloodwork three weks ago and came back with a TSH of >150.  Thus began three weeks of utter hell.  My GP started me on 75 ug of levothyroxine (sp).   The first day was great and the next five days were horrible.  anorexia, nausea, muscle tremors, weakness, excessive large amounts of urination.  On the sixth day I stopped the meds.  That night I had stabbing pains in my arms and legs and my feet felt explosive and hot.  I called the GP who said to take bendryl-within ten minutes I couldn't walk, was having severe tremors and at the ER was delirius.  

Went to an endo (I call her HELGA  the evil bitter spawn of hell).  So Helga says it was adrenal and runs bloodwork.  I go back in a week later and she says the bloodwork was normal-aldosterone 4 ng/dl and cortisol was 6.6 ng/dl.   Also positive for TPO antibodies. She starts me on 25 ug synthoid for five days then 50 ug synthoid till the next appt.  

The first day the muscle tremors start again accompanied mild numbeness in my fingers.  Nausea, anorexia, and a headache were constant all week.  I realized drinking salt water , V8 or gatorade got rid of the numbness and shaking.  I couldn't drink water anymore as it made me feel kinda groggy and much worse almost immediatly.  By the end of the week I feel terrible with muscle and joint pain, extreme fatigue and weakness.  I start the 50 ug dose and made it through three horrifying days. On the third day I couldn't get any gatorade to drink and drank water instead.  My hands got cold and pale, and I began to lose feeling in them.  By midday I couldn't feel my hands or feet anymore.  All week I had had problems with my fingers not working really well but this was the extreme.  By that afternoon I was slurring my speech and running into things at work. I tried to drive home but went by the ER as I started feeling wierd chest contractions on my left side.  They stuck me in the waiting room for two hours.  I finally found a vending machine with V8 and was okay within 20 minutes and left.

I kept calling HELGA who said the symptoms were okay.  She finally consented to give me an ACTH stim test that Friday

I stopped the meds on Friday but it took three days for the symptoms to abate.  At one point I drank two glasses of water and within half an hour I could't remember how to get to my mom's house anymore.  I was slurring my speech, staggering and couldn't speak cohesively.  I went to the ER and the guy said I was having a panic attack.  I left.

The next Thursday I went back to HELGA and she said all my tests results were normal and I should start taking the meds again.  ACTH stim test cortisol 7.9-20.9-24.2  aldosterone 8-29-30.  The wierd thing was that within ten minutes of the ACTH injection I felt normal again at least for that evening.  I went out and could eat a meal and actually drink water, at least for that night.  

Satanic HELGA says she has treated over 5000 thyroid patients and never seen anybody like me.  I think she feels she must kill me off to erase the evidence.  As I understand it many of my symptoms were due to hyponutremia and the numbness was due to hypovolemia.  The neurological effects were likely a combination and mimic what is called "water intoxication"  that happens to marathon runners who drink way too much water and sweat all the salt out.  I have been to the ER five times in the past three weeks and they just don't understand what to do with me.  

I see another endo this wednesday but if he doesn't help me I don't know what to do.  My GP took me back and ran a bunch of peripheral bloodwork to try and eliminate any other problem.  She also did a pituatary and brain MRI which looked okay.  I am at such a loss.

I am okay now off the thyroid meds but I can feel the hypothyroid symptoms now-I just thought I was getting old before :)

[tina999]

The reason the adrenal antibody test takes awhile to come back in probably due to the small number of requests for the test.    It is pretty rare so likely only a few labs do it.   Each of those labs will buy a kit which can usually be used for 96 samples at a time.  I bet they keep the incoming serum samples frozen at -80C till they get enough in to run the assay all at once thus the slower turnaround time.   I build immunoassays for a living and this is how we do ours.

I doubted HELGA the barbarian endocrinologist would submit mine for testing so I sent them myself using Health tests Direct which works throuh LabOne.  It cost  225$ but I need to get answers and she isn't a reasonable person.

[Jimlow]

Hi, your experience does sound hellish, I'm sorry you have been through so much. I'm also sorry to hear like so many of us, you were not taken seriously by your Dr.s. The anxiety attack catch-all diagnoses is used a lot by "busy" Dr.s. I was first told my Hashimoto's Disease was Generalized Anxiety Disorder.
Your ACTH Stim. test sure looked low on that baseline reading of 7.9. The fact that you felt so much better after the ACTH injection, seems to me would raise suspicion to your Doc, that maybe your adrenals are not functioning normally.
I certainly understand your frustration, I sometimes have called it "medical twilight zone".
Have you done much search engine research on those symptoms, to see if there is a connection to adrenal function? I will say this; adrenal insufficiency can worsen severely if a person is given thyroid homone ,medication before it is treated, in fact the makers of all brands state this and even warn of possible "adrenal crises". It sure sounds like your thyroid med., was a trigger for worse symptoms!
I hope they will continue testing for you and get to the cause! If you find out about a test through research, they haven't given you, I would sure tell them you need it! If your Doc refuses, ask her/him to put that refusal in writting, so you'll have a record. I don't normally say this but your symptoms sounded like very severe manifestations of something serious.
Best Wishes on getting the care you need. If you don't, I would consider finding a Doc that actually cares about something other than thier self!

[ar1281a]

mmmm, in my case dizziness is caused by low blood pressure. It's interesting that you have high blood pressure, how high?

Yes, these dizzy episodes are really, really bad. Although I must admit that they've gotten better. I wonder what that test about salt and water balance is? if you find out, do u mind letting me know?

But again, I think you've been blessed with a wonderful Dr!!!!

[ar1281a]

Hi Tina,

Wow!!! you sure have been thru a lot!!! and I thought that twice at the ER within two weeks was way too much! :-)

I wonder, when you get dizzy, do you know what happens to your blood pressure and heart rate?

It's awful to been told by a Dr that "nothing is wrong with you" when you feel so bad. I'm going thru the same thing right now, and I really doesn't like it as you know they think that it's all in your head. Like I tell people, you're not inside of me and don't know how I feel. Hopefully this new endo will be able to help you! so please hang in there and let us know about your progress. We're all in the same boat!

My endo can't run more tests until I'm off the prednisone for a little while. My GP thinks I'm crazy for sure and that everything is in my head and that besides my low blood pressure and orthostatic hypotension all blood work returns normal.

Again, hang in there, it seems like jimlow said that the thyroid meds are having an unpredicted effect on you. At least that should be the path to explore....I guess and I'm not a Dr.

[ShannieK]

HI THERE, YES AS SOON AS I FIND OUT WHAT THAT ONE TEST IS INVOLVING THE SALT AND WATER BALANCE, I WILL LET YOU KNOW, I HAVE HAD MANY PEOPLE ASK ME, I WISH NOW I WOULD HAVE PAID MORE ATTENTION.  I HAVE HAD SO MANY TESTS HERE LATELY, I USUALLY WALK INTOT HE LAB ABOUT ONCE EVERY 2 WEEKS WITH ABOUT 6 VIALS OF BLOOD NEEDING TO BE TAKEN, I KNOW THAT ALL THE TESTS I HAD THIS TIME ARE REPEATS EXCEPT FOR THAT ONE, BUT WHO KNOWS WHAT IT IS.  I'M HOPING THAT THEY FIND SOMETHING.. I'M HAVING PROBLEMS WITH MY THYROID RIGHT NOW.  I CAN ALWAYS TELL WHEN I HAVE A FLARE UP, BECAUSE MY THROAT GETS SORE, AND IT'S HARD TO SWALLOW, AND I KINDA HAVE THE GAG REFLEX GOING SO I FEEL SICK FOR DAYS, SOONER OR LATER THE INFLAMMATION GOES DOWN, THIS TIME IT HAS LASTED AWHILE THOUGH, BUT I KNOW THEY CAN'T ADUST MY SYNTHROID UNTIL THEY ARE SURE ABOUT MY ADRENAL. YES, I HAVE HIGH BLOOD PRESSURE.  WHEN I WENT TO THE DOCTOR THIS LAST WEEK, I HAD A READING OF 150/104, I DIET, I EXERCISE, I TAKE BETA BLOCKERS TWO TIMES A DAY, AND IT DOES NOT BRING DOWN MY READINGS.  IN FACT, I HAVE OFTEN WONDERED THROUGH READING SOME ARTICLES, IF THE BETA BLOCKERS MAY IN FACT HAVE SOMETHING TO DO WITH MY HAIR NOT GROWING BACK.  MY HAIR FELL OUT IN CLUMPS UNTIL I STARTED MY SYNTHROID AND THAN STOPPED, BUT IT NEVER GREW BACK.  I HAVE BEEN ON THE BETA BLOCKERS THE SAME AMOUNT OF TIME AS THE SYNTHROID AND HAVE READ MANY SITES NOW THAT STATE, BETA BLOCKERS CAN CAUSE HAIR LOSS. HMMMMMMM!!!  I HAVE THE FAINT FEELING AND THE RUSH EVERY TIME I STAND UP AS WELL, BUT DO NOT KNOW MY BLOOD PRESSURE READINGS AT THAT TIME, MAYBE I SHOULD CHECK HUH?  GOOD TALKING TO YOU.  SHANNON

[ar1281a]

Thanks Shannon, thanks for your reply. Next time you go to the Dr, you may want her to check your BP when standing as well. My understanding is that orthostatic hypotension (BP drop when you stand) is also a symptom of adrenal insufficiency. I think (and I'm not a Dr) that it could be good if you can check your BP when you get these "dizzy episodes", it could help your Dr as well in determining the reason why, as if your BP is steady (and it's really high!) she may be able to look somewhere else. I honestly haven't read any place that says that high BP causes dizziness...to the contrary. And in my case, I do know that it drops when I'm dizzy (I'm constantly checking my BP). Another thing to look at is your heart rate. Have they taken your HR at the Dr's? mine is elevated as it's compesating for my low BP. When I stand up it increases as it's compensating even more, so that's another vital sign to check. When I go into my Dr's office, I'm able to tell him what my resting pulse has been and to how much it increases when I stand up. That helps. Anyway, this is only a suggestion and again, I'm not a Dr.

I know the feeling about going into the lab...and the Dr's office! I've had blood drawn every single week for the past 5 weeks and everything comes back "normal". I've also been  to a Dr's office once or twice per week for the past 5 weeks. It's really frustrating, but I guess I have no other choice.

Keep us posted and hang in there! it does sound like your endo will be able to find out what's wrong with you. Take care!