Jump to content

fatnsassy

Mega Poster!
  • Posts

    4,820
  • Joined

  • Last visited

  • Days Won

    2

Posts posted by fatnsassy

  1. I took one pill of Cymbalta for my Fibromyalgia and it threw me into an adrenal crisis. I had Cushing's, had pituitary surgery, then a bilateral adrenalectomy, leaving me with Addison's. I take hydrocortisone every day to stay alive. Most of the time I have no trouble, but that Cymbalta threw me for a loop. I had major bad diarrhea, nausea, dizziness, foggy brained, and I think I had a headache. I was a mess!

     

    As Melly said, you could be cyclical, and sometimes we go from one extreme to the other. It can be pretty brutal at times!

  2. There's a drug in the pipeline that could help. Incyte is through phase II on a product labeled INCB13739 for type 2 diabetes. It works by inhibiting conversion of cortisone to cortisol by inhibiting 11-beta hydroxysteroid dehydrogenase.

     

    Incyte

     

     

    If it's a type 2 diabetes drug, what would it do to you if you don't have type 2 diabetes, or any type diabetes? Mess up your insulin and make you hypoglycemic?

  3. Ooo,ooo,ooooo! Please do see if you can find a paper on that! It would make total sense to me as to why my testing was the way it was.

     

    1. My percent free cortisol was really low. Like 1.9% or something similar. I'd have to look. Everyone should have more than that free, het my cortisol binding globulin was not high.

     

    2. My IPSS results were weird. I definitely had sky high ACTH on my IPSS. It was 2,000 something, but my cortisol only went up to 22!??! Weird! You'd think with ACTH in the 2,000 range, I'd have cortisol into the hundreds! I've always thought this was weird, but never had an answer for it!

     

    3. I had a VERY hard time catching highs! Yet, I had MANY symptoms of Cushing's. I ultimately proved it, and I'm doing well in recovery. I'm only on 10 mg. of hydrocortisone with no adrenals, and at times feel that is too much. Yet, I don't feel I have rest tissue.

     

    Thanks so much for sharing this information with us, and I hope that doc can share an article about it! That would help SO MANY Cushing's patients. Many people have similar cases to mine, and this might be their issue as well!

     

    Hugs,

    Gracie

  4. I did a lot of research on toxins a few years ago. On a daily basis, we deal with over 150 chemicals that our grandparents were never exposed to. It's everywhere around us! Our homes are filled with chemicals! Carpet, vinyl flooring, and varnish on wood flooring or cabinets/furniture.... they all have and release chemicals.

     

    I decided which chemicals I thought I could reasonably try to eliminate from my every day use. The others, I just have to live with. I think the only way to get away from them is to live in a house with dirt floors or at least natural wood with no finish. All hand made, along with hand made clothes made with home spun cotton that's not dyed or chemically treated in any way. No fabric softener, only home made detergent (it still involves chemicals), no body wash or shampoo that smells good. We need to eat foods only grown in our gardens, and eat meat that we raise to make sure there are no steroids in it! That also means milking our own cows and having our own chickens. The list goes on and on. Our modern world that makes everything so nice for us is also poisoning us. I don't see where we have much choice in the matter. On some things, we do, but not everything is feasible for everyone.

     

    I agree, I think the chemicals have caused a lot of the disease and conditions we see today. Some of us are more sensitive to these chemicals than others.

  5. My only thought of the steroids mentioned was if by having the tumor hemorrhage, she would have dropped low, and went AI and needed steroid replacements to bring her back up. I don't know. But we all know you don't normally treat Cushing's with steroids. Not unless you drop too low.

     

    This serves as another reminder to those not cured yet, we need to get diagnosed as soon as we can. We must NEVER give up! I always felt like a ticking time bomb, waiting to go off. It was me against the disease. The race was on, and I won. It's too bad this poor lady didn't! It also proves we need better imaging available and better testing available to us! Her scan never picked up her tumor. If it had, they might have taken her more seriously in the first place and she might have been saved.

     

    Hugs,

    Gracie

  6. Update on my signature:

     

    Took Ketoconazole for 2 months prior to BLA @ 200 mg. per night.

     

    Lost 15 lbs. before BLA

     

    BLA with Dr. C. on 5/20/09

     

    Left adrenal 7.3 g. Right adrenal 7.9 g. Normal is 4 g to 6 g. Right adrenal had hemorrhaged with 1 cm at greatest distance.

  7. Low IGF-1: 109, 94, 95 range: 106-368 (for my age group)

    Growth Hormone deficient: stim to 2.2, above 9 is normal (GHRH/Arginine stim test)

    Vitamin D deficient: 16, target range 32-100

     

    On GH replacement since 1/08, now up to 249

    Vit. D replacement - still running low on 50,000 IU x 1 per week

     

    Midnight Serum Cortisols: Suggestive : 5.5, 6.1, 6.2, 6.7 Diagnostic: 8.5, 12.6, 12.6

     

    17-OHCS: 6.0, 7.6, 8.0, 8.3, 11.3, 13.0, 23.3

     

    IPSS on 5-19-08 High results: Baseline 10:1 and post CRH 37:1 on right side.

    Diagnosed with Cushing's disease 6/08

     

    Surgery for pit tumor removal 8-21-08 with Dr. Hae-Dong J., in Pittsburgh, PA.

     

     

    Removed small mid line tumor. Post op cortisol crash numbers:

    Day 1, 6.1.

    Day 2, 0.7!

    Day 3, not witholding and had 60 mg. of hydro the day before was 1 point something!

     

    Now I have Diabetes Insipidus. We are not sure yet, if it is temporary or permanent. I don't care. I'd trade Cushing's for DI any day!

     

    Looks like a cure! I hope it stays that way!

     

    DI disappeared around 13 weeks post op

     

    Diagnosed with recurrance on Dec. 21, 2008

  8. It would help if they would give the name of the skin cream, so others would know if they have it in their cabinets or are currently using it. What good does it do them to report on it when they don't tell you what the name of it is? But... thank you for sharing this article with us. It just goes to show, we don't really know what all is in the products we use! SCARY!

     

    Hugs,

     

    Gracie

  9. Update on my signature... more highs:

     

    Low IGF-1: 109, 94, 95 range: 106-368 (for my age group)

    Growth Hormone deficient: stim to 2.2, above 9 is normal (GHRH/Arginine stim test)

    Vitamin D deficient: 16, target range 32-100

     

    On GH replacement since 1/08, now up to 249

    Vit. D replacement - still running low on 50,000 IU x 1 per week

     

    Midnight Serum Cortisols: Suggestive : 5.5, 6.1, 6.2, 6.7 Diagnostic: 8.5, 12.6, 12.6

     

    17-OHCS: 6.0, 7.6, 8.0, 8.3, 11.3, 13.0, 23.3

     

    IPSS on 5-19-08 High results: Baseline 10:1 and post CRH 37:1 on right side.

    Diagnosed with Cushing's disease 6/08

     

    Surgery for pit tumor removal 8-21-08 with Dr. Hae-Dong J., in Pittsburgh, PA.

     

    Removed small mid line tumor. Post op cortisol crash numbers:

    Day 1, 6.1.

    Day 2, 0.7!

    Day 3, not witholding and had 60 mg. of hydro the day before was 1 point something!

    Now I have Diabetes Insipidus. We are not sure yet, if it is temporary or permanent. I don't care. I'd trade Cushing's for DI any day!

     

    Looks like a cure! I hope it stays that way!

×
×
  • Create New...