Jump to content


Board Member
  • Posts

  • Joined

  • Last visited

Everything posted by AmberC

  1. AmberC

    Hormone List

    My current diagnosis is secondary adrenal insuff and diabetes inspidus. Here's my current list including the changes I want to make or just made: Hydrocortisone (generic) 12.5 mg@ 7 am; 2.5 mg@noon; 2.5 mg @4 pm and 2.5 mg during/aftrer exercise (whatever time I do it) acto-vial cortef 100mg Im in an emergency (I say this because I have had a bunch and some docs use dex for emergencies, does not work fast enough for me) Prednisone 3 1/2 mg am 1 mg pm for five days after use of stress dose steroids. This is because, after extensive research and having high serum cortisol results after final surgery, I and SOME of my docs including my endo but not her associates believe that I was storing and releasing hydro after stress doses. Most of you know that when you take hydro (or release cortisol) some of it enters bloodstream, some is excreted and some is bound. The problem is bound to what. Some binds to proteins and some is, as the latest research by Dr. Levesque (France) shows, is bound to bio-active adipose tissue. So, I was given stress dose steroids during my last surgery and hospital stay. A lot. So when I was weening and losing weight, I still had too much and felt "Cushings" bad. So I stopped taking hydro for tests, and my levels were still high. Thought it was back and docs started search for ectopic tissue. Then I had a crisis, hospital, stress dose steroids, and "Cushings" bad again. The answer, for me was to go on pred for three weeks to let all hyrdo out of my system and then go back on hydro. Dr. Levesque recommends 5 pred days anytime you have to use stress dose hydro. I just had a bee sting a week or two ago, and it cause a crisis. (I guess I am allergic to bees now, of course) Was in er for 13 hours and I had 3 doses of 100 mg solu-corteff including the one I gave myself. The next day I started Pred for 5 days and no problem. No "cushings" bad, just my normal "adrenal insuff" bad! Dexamethasone 4mg/ml vial to prevent crisis in case of vomitting/diarrhea .15 ml IM in place of morning hydo dose every other day, then I follow the rest of hydo doses. I do this because I have another problem going on. Docs think might be spondalytisis or lupus, or even ms. Doing tests now, but have some GI problems in the mean time. Thyroid: Nature-throid 1 1/4 grains I used armour thyroid in the past, but they changed their formula (very bad) and I started to have side effects. I love the Nature-throid. Much better than any synthethic for me. Growth hormone: Humatrope 6mg: .6 mg daily Sex hormones: Vivelle dot 0.1 mg patch 2x per week Medroxyprogesterone 5 mg tab days 1-12 DHEA 25 mg per day These are the ones I am unhappy with. My testosterone is 0. The progesterone makes me feel like I am going to vomit. The vielle makes my skin blister under patch and it doesn't heal fast and I still have hot flashes etc. So Jenny (thank you) recommended a est/pro cream she gets from a mail order. My hubby works for coorporate Walgreens and that is who my script coverage is through so I have to get scripts filled through them. They will compound me any cream my doc perscribes, including a copy of Jennys E2/P4 .25/50 mg/ml, but what about testosterone. I know there are replacements out there, but all are for men, right? My compounding pharmacist recommended adding a 3% aqueous testosterone to the above compound.
  2. Well, I was off to a good start, then my blog kinda fizzled, but here are the highlights: 9/08 through 3/09 I had Five Pituitary surgeries. I am very fortune to live close to an amazing cutting edge nuero-surg doc. He is able to plane away small sheets of pit tissue until he finds the adenoma and then remove just the amount necessary to achieve a cure. Well, he did this on each surgery, unfortunately, I had tumor material all through my pit. The ACTH secreting adenoma was in the posterior pit pressing into the stalk, so at the end of March 2009, he took the rest, stalk and all, and "burned" all surrounding areas to prevent any reoccurance. I have had some ups and downs getting my hydro adjusted, but have been on the road to recovery since July 1, 2009. Now, I know what has been happening since I was a teen. I have had periods of high and low weight, on and off symptoms, and no diagnosis. In my cortisol low times, I have had so inflammatory problems but every time I made it to the right doc with tests in hand the cushings was back and I was masking any other problems with my high steroid levels. So that is my current battle, the inflammatory process is back , with a vengence. I guess that is the way it goes though. This cushings cycle was the worst I ever had so of course the inflammatory condition would be as well. Testing now for two conditions, anklosing spondalytis and systemic lupus. At first, MS was in the running, but ruled out now, thank goodness!
  3. AmberC

    Here is my story

    I am 34 and started to have BAD symptoms that took me to a doctor in January of 2007. I told my PCP that I was gaining weight, was fatigued, in pain, no energy, hair falling out, dry skin and felt lousy! She said eat less and exercise more. Here's the problem: I am a personal trainer, competative power lifter and certified nutritionist. I am very active, spend about two hours a day lifting weights and an hour on cardio. I keep track of everything I eat and KNOW that I should not be gaining weight. Of course she did the usual work-up and surprise nothing was wrong. I guess I am convincing, because she sent me to an endo, (a terrible endo) who said it must be polycystic ovarian syndome. Bloodwork and an ulrtasound....wrong! So the endo dismissed me and said that if it wasn't PCOS, then I should seek psych treatment. I went back to my PCP because now I was really gaining weight, (110 lbs to date) and the anxiety was awful. I never understood when people complained about panic attacks. Now I do. My PCP, Dr.B, put me on Prozac to help with the anxiety, and found me a new endo. I had to wait almost two months for an appointment, but in the end, it was worth it. The new and my current endo, Dr. Jen, is wonderful.
  • Create New...