Getting Tested For Neuroendocrine Tumor At Nw-New Endo

[cberau]

10.3, reference range ended at 10.1

[sue1234]

If possible, it would be great if they would test your PTH(parathyroid hormone) and possibly do an ionized calcium. That would give them a better picture of what's going on with your calcium issues.

[cberau]

I'm expecting to hear from Dr. Goodman today or tomorrow hopefully. I wonder what he will say about both that and the cortisol thing.

[sue1234]

Just curious, how low was your cortisol? It seems I've read in the past that anything below 5 definitely warrants a stimulation test.

[cberau]

1.6 at 6:48am, however I feel it could have been thrown off. I was awake for over 40 hours due to my ever present insomnia, and I had just drove 2 hours from Prescott, AZ to Scottsdale. In may, my cortisol was 13.8 at 10am, both times were blood, never had a saliva test, and both tests were done at Mayo Scottsdale.

[SarahA33]

Kris,

Thanks for the kind words. I've had a migraine that won't let up also. I've been down for the count.

I'm sorry to hear you've not been feeling well also... I wouldn't wish this on anyone but it is nice to feel not so alone. Hope things are better for you

[Kris4444]

Sorry about the migraine. I understand completely.

Do you work? I am thinking about disability but not sure if I would qualify.

I'm sitting at the lab now. I forgot my book.

[SarahA33]

Yes, I do work.

I was off of work for 2 years and went back 7 months ago. I unfortunately can no longer do what I love and went to school for. I used to work with children with autism. Right now, I have a desk job.

Are you working now?

[cberau]

I'm starting to think about disability. It's so surreal to be thinking about disability when you had just become qualified to be an airline pilot of all things. Grrrr.

[Kris4444]

Some news:

My nighttime cortisol levels were normal. Endo is now looking for a carcinoid tumor rather than Cushing's.

I had an appointment today with my EDS doctor and also took my 12 year old daughter to be evaluated, she has been complaining of knee pain and "tingly legs" when she goes from sitting to standing. She was diagnosed with Hyper-mobile EDS today...I pray that we caught things early and with the proper education we can keep her from ending up like me. They are sending her to be evaluated by the EDS PT people and then she can work with a sports medicine PT place since she is so active in sports. It hasn't really sunk in yet that she may go through what I'm going through. I pray to God she doesn't.

As for me, my doctor thinks it's time for me to file for disability. He said that taking care of myself has become a full time job. He said I can file while I am still working and that they may ask for accommodations from my employer which will most likely be rejected but that they respect those of us who try to keep working. I've heard the complete opposite before so I am torn on what to do. He did suggest getting a lawyer involved and I did get a number for one today.

He also explained my hyperglycemia issues and my weird hypo type response to food. He explained that it has to do with my hyperadrenergic state. That when we eat the blood pools to the GI system to help it digest. Because I have EDS, my vessels are lax and so the blood gets there quickly, taking blood away from the brain too quickly causing the sleepy feeling and confusion. When my messed up system sees that it has to digest food, it sends out adrenaline instead of insulin, I flush and everything goes haywire. Sounds about right. He said that my old Endo probably isn't familiar with hyperadrenergic states and how they affect people when they eat which is why he said he has never heard of such a thing.

I found out from my Rheumy today that I have had positive ANA twice now (although low and considered borderline) and that my issues with the sun are not from any of my meds but due to the autoimmune component. My pattern was nucleolar both times. Also my C4 complement has been consistently low. I believe that my immunologist has commented on that as well.

Lots to think about. Not sure if the hubby is on board with the disability idea but I don't know how much longer I can keep this up.

Oh and the EDS doc says he still thinks there is mast cell issues going on and that they won't find a tumor. He said that doctors are not testing properly for mast cell. Tryptase doesn't matter. He is going to contact one of his specialists in mast cell to find out what tests we should run to see if that might be the problem. He said it's really common with us EDsers.

[Mydoggielovesme2]

Being a type A personality, and working 8-12 hr days, plus volunteering, I completely understand the hesitation to sign up for disability. Its a big decision. But when the Drs encourage it, you really need to seriously consider it. Stress is such a big factor in our health and working only added more stress. Especially when you can't control what your body does. I also realize pride is a factor. Not only for us, but for our spouses. But please remember, just because you can not work, you are no less a person. You will just be getting an income in a different way, while having more time to work on YOU! Sure it takes some getting used to, and there will have to be some sacrifices, but in the long run, it is worth it. Remember too, it also takes quite some time to go through the process of signing up, ect. So the soon you get started the better.

[Kris4444]

Thanks for the encouragement. My life is miserable, I am miserable. I know it's the right thing to do. Unfortunately, we live paycheck to paycheck so missing any income for any length of time is going to be a major issue.