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Koo last won the day on November 24 2010

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About Koo

  • Birthday 11/24/1972

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  1. Sarah, how are you feeling? I haven't checked on anyone in a long while. Update me on what's going on with you. How are your kiddos?

  2. Chardell, nice to hear from you! How are you doing? Send me an update, I'm out of the loop.

  3. Hey Kristin! Thinking about you.

  4. Hi Kristin! How are ya?

  5. Sorry, I like Gracie have been swamped. Can you add me as well? Kristin, Utah Pituitary surgery, University of Utah 4/15/2010 BLA, University of Utah 6/28/2010 Thanks everyone for contributing! It's wonderful to have so many experienced here to help! I couldn't have gotten this far without you all!!!! Hugs, Kristin
  6. Thanks for everyone who made this possible! I'm so overwhelmed with excitement! Dr. F. gave me my life back and being here will help so many more. I'll definately tune in! Question: Are there any experts in genetic testing for endocrine diseases? Some of us have so many family members that we are starting to worry about. If a marker was located and known to our docs, it seems that the fight for dx. wouldn't be so hard. Do you, Dr. F., take patients for such testing? Thanks again! Love, Kristin
  7. Robin, I think that makes sense to me. All I know is that I just switched and I have shifted out of the lull I was in losing weight/inches/symptoms. Now I'm on track again. Plus it will be easier to wean when I have to on this 10/5/5 instead of 15/2.5/2.5. I'm not one that can compare what three doses does as opposed to two though, just what happens when you are more balanced instead of taking a huge dose in the morning. How is work going? School has been back in for a while, are you coping well? Hugs, Kristin
  8. I have been on addisonssupport.com and they are super nice. This is where I found this information. However, there aren't as many people on there and it takes quite a while to get a response. I don't think that there is a view new content feature so you have to cruise around the boards to see new stuff. What others have you all found?
  9. I take 10 mg at 0530 and 5 mg at 1300 and 5 mg at 1800. I would call your doc and see if you can split yours first to 12.5/7.5/5. That is 25 mg though so you would be 1.125 less than you are used to. I couldn't wrap my brain around how you were taking 6.125 and couldn't divide it up right. You know what I mean though. Let us know what your doctor says. Hugs, Kristin
  10. I read this on the Addison's site I'm on the other day and I've tried it for two days now. My swelling is completely gone and tonight I'm down two pounds from Tuesday morning (and usually I don't weigh at night so tomorrow morning might even be better.) My rings are falling off of me. So I was taking 15/2.5/2.5 hydro with 0.1/0.05 Florinef in between the hydro doses. Now I take 10/5/5 and still the same fludro dose. I know it's a lot of times to remember but it is so far working for me. Here is the source of my lunacy! LOL! HC Dose Frequency Effects on Urinary Cortisol http://toxnet.nlm.nih.gov/cgi-bin/sis/search/r?dbs+hsdb:@term+@rn+50-23-7 Absorption, Distribution & Excretion: We investigated the influence of dose distribution in hydrocortisone replacement therapy on urine free cortisol excretion. To this end, we measured 24-hr urine free cortisol (24-hr UFC) in 13 patients with hypocortisolism. The patients took 25 mg hydrocortisone/day according to the following schedules: either a single 25 mg hydrocortisone dose at 8:00 a.m., or 15 mg hydrocortisone at 8:00 a.m. and 10 mg hydrocortisone at 2:00 p.m., or 5 mg hydrocortisone at 8:00 a.m., 10:00 a.m., 2:00 p.m., 6:00 p.m. and 10:00 p.m. 24-hr UFC decreased significantly with increasing division of the daily 25 mg hydrocortisone dose. When taking 25 mg hydrocortisone in a single morning dose, the mean 24-hr UFC was 649 + or - 52 nmol/day (mean + or - SEM). When the daily dose was divided into doses of 15 mg and 10 mg hydrocortisone, 24-hr UFC was reduced by 28 % to 466 + or - 39 nmol/day (p < 0.002). After division into five doses of 5 mg, 24-hr UFC was reduced by 42.8 % to 371 + or - 36 nmol/day (p < 0.001) compared to the single 25 mg dose. These data demonstrate that consideration of the dose distribution in hydrocortisone replacement therapy when analysing 24-hr UFC is of clinical importance. [bliesener N et al; Exp Clin Endocrinol Diabetes 111 (7): 443-6 (2003)] **PEER REVIEWED** PubMed Abstract -------------------------------------------------------------------------------------------------------------------------------------- An assessment of optimal hydrocortisone replacement therapy Howlett TA. Leicester Royal Infirmary, UK. Clin Endocrinol (Oxf). 1997 Mar;46(3):263-8. Clin Endocrinol (Oxf). 1997 Mar;46(3):269-70. OBJECTIVE: To assess the management of hydrocortisone replacement therapy in one institution, and derive recommendations for optimum starting and maintenance replacement therapy with hydrocortisone. DESIGN: Retrospective survey of clinical management using a clinical information system and the patient case notes. PATIENTS: Using the department's clinical information system, 210 patients were identified who had been treated with hydrocortisone. Case notes were reviewed and 130 patients were identified whose records contained the results of at least one valid hydrocortisone day curve. Data on 174 day curves performed on these patients (65 on twice daily and 109 on thrice daily hydrocortisone regimes) formed the basis of this analysis. METHODS: Hydrocortisone day curves had been performed as part of routine clinical management: patients collected a 24 h urine for free cortisol on the day prior to the test and took their morning hydrocortisone at the normal time, at home, on wakening. During a day-case attendance serum cortisol was then measured at 0900 h, 1230 h (prior to any lunchtime dose) and 1730 h (prior to the evening dose). 'Optimal replacement' was arbitrarily defined as that dose which achieved a UFC and 09:00 h cortisol within the reference range for the normal population (to avoid over-replacement) combined with 1230 h and 1730 h cortisol above 50 nmol/l, and ideally above 100 nmol/l (to avoid under-replacement). Raw data from all hydrocortisone day curves was analysed in an Excel spreadsheet to determine the effect of different dose regimens on the percentage of patients achieving each and all of these 4 criteria, and on an overall 'quality score' (comprising 1 point for each of the 4 criteria attained). RESULTS: Patients on twice daily hydrocortisone regimes achieved optimal replacement in 15% of cases compared to 60% on thrice daily regimes (P < 0.001 by chi 2); mean overall 'quality scores' for these regimens were 2.72 and 3.49 respectively (P < 0.001 by t-test). Of individual dose regimens with sufficient cases for valid comparison, a dose of 10 mg/5 mg/5 mg (rising/lunch/evening) achieved optimal replacement in 66% and mean 'quality score' of 3.62 (n = 53), compared to 50% and 3.32 for 10 mg/ 10 mg/5 mg (n = 28) and 10% and 2.48 for 20 mg/-/10 mg (n = 29). CONCLUSIONS: The use of arbitrary, but logical, criteria to assess the quality of hydrocortisone replacement regimens indicates that optimal replacement is achieved with thrice daily hydrocortisone regimens, and that the traditional twice daily regime results in a 0900 h cortisol above normal in one-third, and late afternoon cortisol below 50 nmol/l in one-half of patients thus treated. An appropriate starting dose of hydrocortisone of 10 mg/5 mg/5 mg (rising/lunch/evening) is suggested, with subsequent individual adjustment based on simple hydrocortisone day curves. ------------------------------------------------------------------------------------------------------
  11. Never. I don't drink soda much at all but if I do it is the real thing Aspartame scares me. My mom drinks diet Coke and I try to tell her how bad it is but she is addicted.
  12. It might be good that he is a resident in a way. I'm sorry that you can't get a referral from him (can he talk to the doc that is over him and get his help?) However, this means that he should still be in contact with the professors and other residents. Maybe this study is still in progress or waiting for validation. Possibly we could put some of our docs in touch with the school. Are you going to continue to see him? If so I bet he will help you with referral. Hugs, Kristin
  13. I would definately like to see the research on this. Even if it is just one single paper. Why doesn't information like this get to the people who need it (like the docs that are running us into the ground with misdiagnoses). Maybe he will help you get to treatment for this! Thanks! Hugs, KRistin
  14. Mary, I'd love to do an interview now that I'm feeling better. I just can't find a tab that will let you know that, so I posted it here. Send me a message and we can work it out if you'd like. Thanks, Kristin
  15. Koo


    Mary, Is there anyway that we could buy the things that you still have, with extra for the site, without an online store? I had no idea you still had these things. Thanks, Kristin
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