Are you being seen at a pituitary center?
I didn't know that there was a Pit.Doc. Is that the same as an Endo. I have seen plenty of NL with NO answers. I was told by my Endocrinologist to see why my face has so much numbness over the top lip, tongue and forehead. It is mostly all located on the left side of my face. When I get upset or fret @ something...my temple will hurt and pain will shoot through it. Usually, the left one hurts all the time, but the right one has had pain as well. I will look into a Pituitary center...Thank u, K
Sorry - I just got out of the hospital so I am a bit out and I was trying to answer on the phone a bit.
There are regular endos and neuro-endos. You need a neuro-endo. Larger hospitals and university centers will often have one. The health pages to the right have some doc lists. Do read up a bit, not all are great.
Usually one is dx'd with addison's with a stim test, not one blood test. Cortisol can vary quite a bit. So it takes a bit of testing. Plus you should have sodium and potassium abnormalities - the reason I ended up in the hospital is I threw up, got dehydrated, lost sodium and voila, I could not recover. The disease is a salt wasting one. You may really have AI - like me - which is more pituitary related.
You need a good doc to get at the crux of the matter. Imaging at this point is not that useful - you cannot see through the CSF.
Sorry you are feeling so horrible. I think there is a Dr. Ali Krisht, a neurosurgeon, at St. Vincent Hospital in Little Rock who is very pituitary knowledgeable. Maybe a good place to go if it is close to where you are.
Empty Sella can be caused by a cyst, or cerebrospinal fluid filling the sella and flattening the pituitary gland. An excess of CSF can put pressure on cranial nerves also, causing numbness in the face. You may have intracranial hypertension.
I hope you find an excellent doc soon to help you.
Rumpled - Do you take Florinef? My son does, but it doesn't seem to help with any symptoms, although he had low aldosterone before starting it.
Sorry you are ill. I hope you are feeling better.
Yes - I take 1.5 pills - my BP is forever in the hole. When I got sick it dropped too far and I could not get out, hence they admitted me. :( Getting back up but the taper - ugh.
I want to thank u guys for giving me a Doc's name and someone who might give me some answers to what is going on. I need me some ideas because I feel something is not right and I really need someone to tell me what is wrong. You know...when or if something isn't right. I do know that something definitely isn't right...and don't know what to do @ it. I am afraid...to be honest.
I do know this too...If, you want anything done..you have to push to get it done yourself..and I am afraid that if...I don't push here..I won't be around to push anything. I have known that something bad was wrong...for a long time, but how do you present that? I told my Docs that something is bad going on and I need to find the answer, before whatever it was killed me.
I already thought @ the CSF filling up and pressing on my Pituitary. That is scary and probably what caused me to have that episode last week.I don't know for sure what it was...and should have gone to the ER, but...I hate going to Hospitals and to be honest..I hate seeing Docs. But, what are we gonna do? I have seen so many Docs and it has taken so long to get where I am now.
I don't understand how the pieces of the puzzle aren't adding up for the Docs that I have seen,by now. Must say that I was blessed to get a dx's..through a Cardio's eyes. He just happen to see that something WAS wrong, by taking the time to look through my blood work. If, he hadn't of cared enough, to take the time..where would I be now? Would I be able to even think straight? Hmmm...I donno @ that one, if I ever will think straight. I have moments that I am confused or disoriented. I have bouts of blurry vision and my eyes are cloudy. I know at one time, I was at the end of my rope and felt that I was losing my mind. I do know how it feels to be near death, because I was there. I had got up to 199 lbs.and was stuck in bed all the time, with a moon face. I wasn't even taking Hydrocortisone or an Prednisone at that time, only the Lyrica. So, after reading up on that..I dropped it. It said that it could cause lesions...and my face was a battlefield then. I felt that it had to be why my face had sores all over it and I looked like I had Leprosy. I was miserable.I do have the pics of how bad it looked.
Well, thank God they found that my Cortisol was so low and got me on the right medicine, to help me survive. It has made a difference and I do get up more, but still in pain. I don't see how sometimes that I was alive..really. I felt so dead. My Cortisol was 1..one...and I didn't know that it was a life sustaining hormone. I learned all of that by researching on my own. I have never had a Doc tell me anything..except my Gyno. He is cool and will set with me and discuss whatever. Now, that is how a Doc should be...personable and caring.
I must say...that The Lord must have needed me here...for some reason or another. I am still here. I prayed so hard and knew that I had to give what I was dealing with...and stressing over to Him. I am glad that part of my life is over...it was too difficult. I wanted to die sometimes..but couldn't. I could not do a single thing..without Pain in it. Everything hurt and I was actually, in so much pain that I wanted someone to shoot me and put me out of my misery. But, after the Cardio Doc..got me in to see his friend, who is my Endo now, I got some better, after they put me on Hydrocortisone. I was able to think some better and I wasn't in as much pain...as I was in before. I wonder if..it is just that I had taken the pain for so long that I just adjusted to dealing with it. I really feel sometimes...like I have just had to learn to deal with it...pushing my way through like my family and friends were always telling me to do.
And, I know for sure that The Lord helped me through it. It was Him that would always comfort me..and help me make it through, the worst of the pain.
Now, I thought that maybe this could be a Cyst pressing on my Pituitary too.I have Cysts all over me know..in many areas on my body that seem to come and go. It makes perfect sense. Now, my grandma had something removed from her temple..and I am wondering if it could be the same thing. I am so much like her. I have ganglion cysts on each wrist, knots that come up here and there...that hurtttt!! I had one last night come up in my NECK! It was bad. I have found that if, I rub some Moxibustion on that area...that the pain is easier to deal with. I wish, I knew what caused those knots. They really hurt and I get them in my biceps too...just like someone "frogs" me. I get little knots all along my temples...on both sides, but the left temple is the one that hurts all the time.
Also, I have had two cysts, in each breast, but my Hematologist/Onco. told me that they were gone now. So, I am wondering if they will come back and what is going on and why do I do that? Is it connected in some way to the Addison's. There is always a Cyst or Lymph node that stays swollen on my right side..under the ear, under my jaw,
I was getting sleepy during my writing and I wrote this..(Hey, going to sign off tonight..eyes blurry. It is 1:07 am too and it is late. I don't sleep well...so, IF I close my eys) but, I woke up this morning and see where, I didn't finish what I was writing. I don't sleep well sometimes. I will just nod off and forget all @ it. I forget @ everything. Short term memory is gone. :o
Now, I will go through weeks at a time...of little sleep or hardly any, but been trying to make a certain time each night to go to sleep and some nights it does work. I will keep trying to get on a schedule. If, I don't do that I won't sleep. I will cat nap and wake right up...so easily.
Well, I have written a letter here and speaking of eyes blurry..need a break for them. I will check back in..to see if anyone commented. Sorry, if I am confusing to anyone...in any way of what I said...but, with what I got going on,..I think, I am doing pretty good. lol Hanging in there... :)
Thank you and God Bless, Karen
It can take a lot of doctors.
I am sorry - I kinda got lost. You sound like you gained weight and have moon face, which are symptoms of Cushing's syndrome, but had a test of low cortisol (what time was that test?) which is AI or Addison's...
Cortisol is an odd odd hormone - it varies even in normal people - it is supposed to vary! Normal is to be highest in the morning, and recede throughout the day to be lowest in the middle of the night. In other words it wakes you up in the morning and puts you to bed at night. That is the diurnal or circadian rhythm.
AI or Addison's can be several forms - primary being the adrenals don't get the signal from the pituitary so in general, one has elevated ACTH for the pituitary trying harder to get the signal out. Secondary is where the pituitary is not sending out the signal for the adrenals to put out cortisol - so ACTH is low.
Cushing's is difficult to diagnose (been there, done that, have a t-shirt) in that no one test can rule it in or out, ACTH testing is frequently botched, and the diurnal rhythm can be backwards (low in morning, high at night), or non-existent (high all the time), or cyclical (vary from time to time).
When cortisol goes up and down, being an anti-inflammatory, the pain can be quite intense.
I am not sure about the lymph nodes - I know I get them - and one I have has been enlarged for years in my neck.
What testing have you had?
I want to apologize for it taking me forever to get back, but my memory is almost non-existent. It sure makes it hard to get anything completed. MY legs are absolutely killing me today and have been solid for over a week. They hurt, but now..it is like they won't stop. The tremors in my hands are getting worse too, for now my right hand shakes bad. I have involuntary muscle movements on my right side and will just jerk, out of the blue. And, not just once..but a few times.
I had the morning stem test, but had it tested in the afternoon too. I know that my Cortisol one time was 1 and the highest I have seen it be was 5.3. I also have hyperpigmentation...in my areas that are seen. I don't understand why I can't get a solid dx, but from what I read...usually you don't get hpyerpig..and have secondary...right? I have a very low Cortisol and also a very low ACTH. So, which one is it? I still don't know. Do you guys know what is going on? I believe my Calcium is normal and so is my Pot. levels...so, it is not adding up. By the way, I am of average weight now, not over. I was heavy at 199...when, i took the Lyrica..but, lost 60 fast and my muscles feel like they have wasted away. My legs are really bad with pain. IT seems like it is continuous constricting and pulling. They cramp, ache, burn...and whatever else you can think of. I feel things crawling too..all the time. I have to keep the messager running on my bed..because my legs bother me so much. I have actually burned one motor out, because I had to run it all the time. :o sooo miserable >:o
I just want to get better..where, I can't get out of the house. Thank you Rumpled.
The hyperpigmentation, if caused by ACTH, is only caused from what I know, when ACTH gets over 600 or so. But you can get hyperpigmentation from say, glucose issues and probably other things.
The muscle issues are not what I know to be cortisol related. I associate cortisol with weakness, not movement. So you need a good neurologist for that. And yes, you can have more than one issue concurrently.
Calcium I believe can cause muscle issues - tetany can cause severe muscle contractions. That may relate to the PTH.
Cortisol can also cycle going from high to low - making diagnosis complex and making the symptoms run from both high to low. Many of the symptoms of low and high cortisol overlap, oddly.
I thank you. I just talked with someone who is writing a book on Addison's and she told me that I had BOTH A1 and Secondary Adrenal Insufficiency. I do believe it...because I feel that bad. I wanted you to read it and see what you thought...and if, this is possible. I had thought @ it being both...because of having low Cortisol and ACTH..also, the hyperpigmentation. I think, she is right. Here is what she had to say to me.
"Hi Karen-- I'm happy to help. I know how hard it can be to have so many pains and other issues and not have answers. And, yes, you really seems to fit enough Beighton criteria to have a likely EDS diagnosis. Find a GOOD geneticist-- one who has done EDS for a while. And it sounds like you could be both primary AND secondary AI. I and others here are both and it complicates the diagnosis, but not the treatment. With such low cortisol you really need to be treated for AI- and sooner, not later. It would likely help some of the pains, the memory/confusion issues, and a lot more. The kyphosis (the hump) and the Chiari and a few other things really may be EDS related or may have gotten worse b/c of EDS (such as the Chiari, which may have progressed from the accident but you may not otherwise developed it without hypermobility). Your cortisol is very low, though, so that's AI either way. Are you on any HC treatment at all? Your ACTH was low, which indicates secondary AI, but your hyperpigmentation really could be a sign of primary AI as well (most often this shows up over joints, scars, genitalia (I'm assuming this is what you were describing), in the oral mucosa or over finger bed areas). But hyperpigmentation is Addison's is caused by HIGH ACTH, and yours is low; this being said, I also had hyperpigmentation on the sides of my face and over my knees and elbows and my ACTH was bottomed out-- but I have both diseases-- so it really does confuse the endos/labs/symptoms. I'd assume you also have POTS (low BP or BP that drops when you stand up from sitting and causes your HR to rise)? That's also common with both EDS and AI disease, and would get better with FC treatment. Be careful of chiropractors if you may have EDS; it's really contraindicated because you're already likely too flexible and then they're doing adjustments to joints that are loose already. It may feel briefly better but may be setting you back overall. Do you have an endo specialist and who's running these labs? Yes, send back your stim test when you can-- with both values and ranges and at least baseline cortisol and the 30/60" results after the stim. And any of the other labs I listed that you didn't send yet if they were done. If they weren't they need to be! Hang tight-- you're getting closer!! Keep that hope and spirit-- "
You can see that I am frustrated, but all of this makes sense to me. I never dreamed that I could have both. Now, Ethers-Danlos...is in there to and I never thought that I was that hypermobile, to have it. But, I can bend my thumb back pretty far..to where it looks like a T. I can't do a lot of other things that comes with it, but...I guess if I can bend my thumb back that far, it counts.
Now, POTS makes sense to me...because of that episode I had, where I was tingling all over like a hard rain was hitting me. I don't have any other explanation for it and this girl knows her stuff. So, she must be onto something here. Oohh...I am at least on the right track, I hope.
What do you think @ all of this? Do you have any knowledge of EDS or POTS? I sure hope someone can shed some light on it for me and how it is connected with Addison's. I am already blown away by having both A1 and the Secondary...to even think straight, but I will make it "Lord Willing" and once, the geneticist that I am seeing Tues. tells me what I have..I can move forward.
God Bless you rumpled and Selma...You guys really do help us, try to figure out what it is that we need to do, to get better. :)
It is totally possible to have more than one disorder at once.
I am a bit confused by the note tho - AI = AI - it is just the sources that differ. Even Addison's is a form of AI - it is just a primary form. I don't know what EDS is - but it is easy to get lost in the alphabet soup.
I hope you get things worked out!
Hi again. My son is diagnosed with POTS and EDS -H (Ehlers-Danlos Syndrome Hypermobility Type). And panhypopituitarism (which includes secondary adrenal insufficiency.
Ehlers-Danlos is a disorder of defective or deficient collagen, which can effect the connective tissue anywhere in the body. For some, joint dislocations are their worst problem, others have overstretched ligaments and soft, velvety or "doughy" skin. Chronic pain is common, and symptoms tend to worsen over time.
Many EDSers have adrenal insufficiency, but not the majority.
My son was somewhat hyperflexible as a young child, and has become more and more hypermobile since his pituitary surgery.
There are a lot of co-morbid conditions linked to EDS. POTS is not a disease. It is a syndrome of symptoms caused by an underlying condition or disease. POTS is a type of autonomic dysfunction, dysfunction of the sympathetic and parasympathetic nervous systems. It affects the cardiovascular, gastrointestinal and endocrine systems.