Adrenal Insufficiency Support Group

Try to keep this not to rambling. Here is what I have found out. Apparently after gastric bypass surgery when they give you the bariatric vitamins to take you are only supposed to take them for 6 months to a year and then you should be able to eat enough food to get what you need. I was never told that so consequently I have vitamin E toxicity and close to that on vitamin A. Also my endo at home has me on too much Dex and the doctors at may say I have Cushings syndrome hence the swelling and joint and muscle pain, some of this is also from vitamin toxicity. They are switching me back to HC at the same high dose that I am on for Dex and try to wean me back but the docs here say I am going to go through hell, their exact words. I may have some permanent damage from all of this and may have chronic pain. They are saying that we will know within 3 to 6 months if I can get back to where I was and if there will be any permanent damage. I am beside myself I don't know what to think anymore. The doc here said that back when I first went to my endo saying I was tired and she switched me to the Dex liquid that it probably wasn't Addisons and that I was probably B12 deficient but instead of checking that she assumed I was malabsorbing, which according to all tests here is not the case at all, and by the way they believe I am secondary not primary here. So I feel like I have been hit by a big fat bus and that I am still under the wheels. I am scared, exhausted and frankly bewildered. The j tube they have told me to stop using it to feed and to just use it to hydrate. The intestins around it are completely infected and inflamed and they don't want to take it out yet until we see if I am going to be able to eat without throwing up. So it is going to stay in for at least two months. worst swelling I ever had was today, I couldn't breathe had to take extra water pill. Also, they are doing a sleep study Tuesday because they did an overnight oxygen saturation and my o2 levels kept dropping in the low 80s and they want it to be over 95 so that isn't going to be very much fun I will tell you. Today is my 21st anniversary and sunday is my birthday and I am missing my family, but I am glad I came here because the doc said I was really close to death AGAIN! They are all going to work closely with my family doc and with me and we will all be in touch via e-mail and phone to get me through this.

Thanks for listening and for the prayers and for being there for me. Love to all! Teri

Teri, just know that everyone here is hoping you get through this as fast as possible and get home feeling better!!

Wow, you have really been through so much - you are definitely in the right place and even with the illnesses and conditions you are enduring right now, it must be reassuring to be there. I will pray for your wellbeing and hope that you will be able to not suffer from chronic pain as a result of the toxicity. You have come so far and now, with the best that medical care has to offer, you will be much better than you have been in quite a while.

Lots of hugs!

Teri,

I'm sorry to read what your going through, but so glad your getting correctly and sounds like throughly tested so you can be on your way and not have such dangerous health situations, so scary for you. Your very brave and good thing you got in there when you did. Sorry your missing your family and next year you can celebrate w/them on your Anniversary and Birthday. Hope all the health issues will be addressed as that would be the best BD pressy. Happy Birthday/Anniversary! Hang in there, and thanks for sharing. Keeping you in my prayer and thoughts.

Laura

Hi Teri,

I know how hard all of this is but you are already so much better off getting some answers, now there is hope. I was really worried about you but know you are in great hands there and one step, one day, at a time. You will heal and improve each and every day, I know it. Keep posting, and Happy Anniversary and Happy Birthday!

We all love you,

Deb

I have been thinking of you and checking back here, waiting for your posts.

Hang tough. You will get through this. I _think_ that vitamin overdose can resolve pretty quickly, although I am not sure if that holds true for fat soluble vitamins like E. Hopefully that will give you some fast relief though.

M

I am so glad your are getting answers! I am sory you are going through so much!

Will you be having surgery then? Any idea on how long you will be there now?

Praying things continue to go well and you are feeling better much faster than months.

I can still try to make it over if your not going home.

XOXOX

Kim

Teri, are you still doing okay? How are you feeling?

OMG Teri,

I have such mixed emotions of anger that someone screwed up your system and drove you to Cushing's. I'm also so very upset for you having to endure all of this away from home & family. However, I'm happy that these doctors are finally getting some answers and coming up with a viable treatment plan. I hope you progress better & quicker than they expect. If you have surgery, they are the best place to be.

Do you have any friends or family up there right now? God how I wish I could get in my van & drive to you right now. Unfortunately, the van isn't even working right now (that's another story). If my autistic son TJ didn't need me, I'd be there by your side. I went to Mayo in '01 & '02 with my husband and I remember the feelings like it was yesterday: scared, overwhelmed, frustrated, tired of doctors & tests, nervous about results, lost in that huge complex, worried about paying for gas, food, lodging & more. we made it through but look back & wonder how. You'll do the same thing. You are a survivor with so much faith. God is reaching out to non-believers through you because your success story and the miracle of your recovery will inspire so many people to have faith in God as you do and keep their strength when everything in the world is against them. Right now I'm hoping you're relying on your bible, your family & friends, and your faith. Try to text or call or email friends as much as possible to keep getting the support you need. You need to be able to gripe, vent, cry, anything...My last message I gave you my number - I'll give it to you again 219-552-4816 call me or text me any time. If there is any chance of me being able to take a short trip up there, I'll let you know. It would take some maneuvering in my life but I'd want to try. Do you have any idea how long you have to be there? Any other answers? And, have you tried to stay at the Ronald McDonald House? Lastly, the adrenal foundations sometimes offer grants "helping hands" for people in your situation. If you or a relative has time to research grant money for sick people or Mayo patients that may help. Maybe Mayo has scholarship assistance. I'll try to find out what I can for you.

I'm gonna keep thinking of you & praying for you even in my sleep till I hear your voice or get another post!

Love & Hugs,

Angie

HAPPY BIRTHDAY & ANNIVERSARY!!! You'll never forget this birthday. Consider it a "re-birthday" because you will be like the Phoenix and rise from the ashes better than before. It may take some time, but Mayo Clinic will ensure that you go home much better than you were when you walked in the door. This is probably a blessind in disguise because you could've died. I know you will improve & your quality of life will also!

xxxxooooo

Angie