Low Cortisol---but Not The Acth

[Maxine]

The endocrinologist doesn't feel it has anything to do with how I'm feeling either. The cortisol is just 4.08, which isn't that low.

I went to my neurologist for my check up at the Cleveland Clinic Monday, not really for my cervical cranial instability issues (CCI), but for some lesions in my brain.

I did tell him about the recent 3D CT scan that was recently done. The rediologist LOCALLY read this as "normal", but it's anything but normal. The orthopedic surgeon said it was 7.5 mm off on the left, and 7.9 on the right. I discussed this with the neurologist, and he said I saw two surgeons there that said I don't have instability. Then he switched subject to my "switch being turned off". I told him this is what it felt like lately when I try to do any physical activity. I've been having some really bad days. I forgot to tell him my cortisol levels were low.

We had my Son and his wife, two granddaughters, and mother in law over for dinnner. The oven was on in the kitchen after I prepared the vegetable lasagna. I made a meat sauce for the meat lovers also. My husband helped a lot, and did a lot of the chopping of the veges. I had to layer it though, and did this while I sat on a stool. I knew I wasn't in great shape, but kept going. The heat got to me so badly, that I was in awful shape for the rest of the night. Now the warm weather kicked in----we had a few 80 degree days in NW Ohio believe it or not. My heat tolerance is worse then ever now.

We discussed this, and how quickly I start shutting down when trying to go out and do anything. I rarely go out by myself unless it's for a short errand. It's not that I'm afraid, it's because once I get out and do whatever it is I'm doing, my body feels so weak, my OI kicks in worse then ever, and I'm afraid I won't make it back home. I have no anxiety when I go out, other then what anyone would get when feeling this way.

I told the neurologist that I felt it was connected to my CCI----but he went on to tell my that two NSGs there said I didn't have it. I said it's rotational instability, and it's axial. It's horizontal! I wouldn't push the issue if NIH didn't say it also---but they feel I have full blown CCI. The orthopedic surgeon said the left vertebral artery is affected because it weaves right through c1-2. This is the joint that unstable. The vertebral artery is not seen in my brain on the MRA done at NIH----reporterd as missing. I know you have all heard this beofore--- . However, if this is seen on a recent ultra sound in my neck, but it's still not visualized in my brain, then where did it go in the cervical cranial area? Why are my headaches on the right side getting worse. Why won't the Cleveland Clinic address the instability? If I were a neurosurgeon I would be listening to the evidence, and putting the puzzle pieces together----especially with TWO MRAs showing the left vertebral artery missing in the brain. I was telling the nurse at the CC about this, and she said don't give up, keep trying to get someone to listen. I'm thinking it's like trying to drill for oil in my livingroom............there's nothing there? They don't get it!

The neurologist Wants to do a arterial CT scan with contrast. I don't know how I will do with the contrast since I haven't had it since 2002. I don't know how my vessels will handle it with the headaches I'm having. Also, I''ve had about 5 CTs in the past year. Three of them in the last few months. I just had one done over a month ago! Isn't this too much radiation? I'm thinking it is! Meanwhile, my head hurts so bad when I sit up, or take a step. It pounds when I take a step. My husband is ready to blow up at someone! He can't believe this hasn't been investigated further.

The neurologist is doing some blood work to see if my weakness is related to something else. There's times when it feels like I can't breathe, like I smothering slowly. My reflexes were really hyper in his office, and he's checking for vitamin E levels?????? I told him I have upper spine compression---(even radiologists have this in my MRI reports.) He's not connected at all with the CCI. Do I need to go to speak with someone at a higher level to get them to understand that the CCI is real, and connected to my EDS because everything is becoming instable? I'm not saying the Cleveland Clinic is a bad place at all, as they saved my brother in law's life. They just don't know a lot about CCI as a result of EDS, and a lot of other larger medical institutions don't either. Maybe the surgeons don't want to deal with it because it requires more investigation, and this isn't the protocol unless there's something obvious radiologically. Maybe it might put their careers at risk. I'm just thinking it's a well known institution, so I guess I'm naive in thinking one of the best clinics around should automatically know about CCI related to EDS. They don't even know much about EDS.

My endocrinolgist was really great about it. He thanked me for the EDS medical resource guide. He takes EDS seriously and understands the connection it has to unstable joints, ligaments-------------and even the spine......

So, here we go chasing other causes for my symptoms once again, while the real cause is being missed. Meanwhile I deal with more pain, and more limitations. I'm told the right vertebral artery is enlarged because it's carrying the load from the missing left vertebral artery, and with the poor vascular tone with EDS this can't be a good thing----------just saying.........

Maxine :0)

[Tammy]

If I remember right I also have low cortisol levels, not low enough to treat as in an adrenaline disorder, but low for what it should be. I too get so weak and have spells where I can't even make a sentence and have to lay down and feel like even if the house was on fire, I'd be to weak to get myself up... that's how extreme the weak spells get. Same thing here... I'm not afraid to leave the house, I actually love getting out, but I also go with someone as I get too weak to drive at times, so need to have someone get me back home too.

I do wonder sometimes if my cortisol levels aren't a big part of my symptoms, because maybe, for me, the level is too low, even though the range the doctors go by falls in the normal limits.

I noticed you mentioned you've had 5 CT Scans in the past year. Please read on the safety of these... there is a fair amount of information as to them being a cause of cancer in years to come - cancer can show up from 10 - 20 years after the scan is performed. When my daughter had one this past year, the radiologist actually said that this risk was real and that is why they only do CT Scans when there is no other test that can be done and the benefit outways the risk.

[delphicdragon]

I've had the tests come back as low morning cortisol as well (also in the 4s). Yet, it stimulates fine with ACTH. I've actually asked to be given ACTH, but sadly no doctor will prescribe that, especially as an energy booster. My last set of cortisols came back low when they were first scanned, then normal when they repeated the scan for the ACTH test. Wondering if the low cortisol is an intermittent thing. (I've had two lows and 3 normals in the past 5 years - similar trend with aldosterone) I sometimes wonder if my hormones are cycling on the wrong clock - like every week it goes back to a normal pattern, then the pattern gets off throughout the week until finally it resets itself. That would explain a lot.

Sara

Feel better Maxine!

[Maxine]

I do not want another CT----so I've been reading about other ways to visualize this vertebral artery. They need to see what happened to it, because it's not in the brain------but it's seen in the neck on the left. The orthopedic surgeon said the artery is likly affected for the instability. I guess the neurologist wants to prove it. Why doesn't he just look at the two MRAs that show it's missing.

I had a chest CT in June, a cervical spine and brain CT, a CT of my inner ear area, and now a CT of my neck with over 1000 views. I'm now realizing how crazy this is, and doesn't the neurologist realize how many I have had? They have my records. My memory is getting so bad, and I feel like I'm slipping more and more through the cracks. Oh----and I forgot about the CT I had in 2006 of my abdomen. So this is 5----with 4 of them being done within 6 months of eachother----

Meanwhile, my instability feels so bad it's becoming difficult to breathe sitting up----more vision issues, and walking any distance is very difficult.

I also feel a big lump in my neck, but anteriorly, and it feels like it's choking me.

This is all insane...........don't know what else to say.................

Maxine :0)

[mvdula]

If I remember right I also have low cortisol levels, not low enough to treat as in an adrenaline disorder, but low for what it should be. I too get so weak and have spells where I can't even make a sentence and have to lay down and feel like even if the house was on fire, I'd be to weak to get myself up... that's how extreme the weak spells get. Same thing here... I'm not afraid to leave the house, I actually love getting out, but I also go with someone as I get too weak to drive at times, so need to have someone get me back home too.

I do wonder sometimes if my cortisol levels aren't a big part of my symptoms, because maybe, for me, the level is too low, even though the range the doctors go by falls in the normal limits.

I noticed you mentioned you've had 5 CT Scans in the past year. Please read on the safety of these... there is a fair amount of information as to them being a cause of cancer in years to come - cancer can show up from 10 - 20 years after the scan is performed. When my daughter had one this past year, the radiologist actually said that this risk was real and that is why they only do CT Scans when there is no other test that can be done and the benefit outways the risk.

Hi Tammy,

I'm just responding because I have those super-weak spells you describe. At this point, that is my main complaint....I can do a lot of normal things, but once one of these hits, that's it. Last night @ 1am just before I was going to go to bed (I know, up too late) it hit me. The sudden weakness......so I went up to bed, but ended up just feeling like I was fading/dying/weak/distracted and went in & out of sleep for at least an hour before I could really sleep properly. I would really love an explanation of what is happening when I get these spells....it is not tiredness.

Also Tammy, I have a lot of your symptoms.....the over-reaction to adrenaline - discovered that at dentist visits, etc etc. Think we have a lot in common. Same on the cortisol a few years back before my POTS Dx, my morning cortisol came back in the low part of normal range, but the acth stim test went fine.....seems to me my cortisol may be dropping/unable to go up at these weak times - my weakness is not related to hr as it can be fast/slow pounding/calm, it makes no difference to my weak spells.