Hi Suzi
Do they still call those Pilates machines, "The Reformer", "The Cadillac" and "The Chair"?
Yes it does take a while to get the right dosage dialed in. You eventually get to the stage though where can read your own body state and even adjust in advance of need. There are basically three root controls or concerns with AI, at this stage you are probably more concerned about the gluco-corticoid side (what HC is mainly) and the mineralo-corticoids (partly HC but mostly from the Florinef). The third being androgens.
First up your HC dose seems a little high, but given the PC doc may be trying to repair a damaged system 30mg is a good enough start point. The dose size is more or less body weight and BMI dependent. 30mg roughly equates to a 120kg or maybe 260lb body in mid BMI. The effects of OD are kind of similar to the feeling of adrenaline and are seen also as fluctuating blood glucose and thus BP. That can easily cause headaches and mood swings. Best get use to the mood swings by the way! Its okay though once you realize that it is drug induced rather than just in your head!
HC is also pretty fast acting and falling so a declining dose size over three doses after food is usually the best approach. 30mg you may take for example as 15/10/5 after breaky, lunch and an afternoon snack. Spreading the dose out seems to flatten the symptoms mentioned above.
Florinef works the side that makes you retain sodium and thus water and this keeps your BP up. If you are still passing water straight through your body (and thus get BP drops) then it indicates that dosage might be too low. Keep in mind though that BP regulation is horribly complex and is also affected by the blood glucose! (which HC raises!) It all becomes a balance thing between the two. If your BP changes are very abrupt there may be something else in the mix, not just AI.
Oh the endo isn't going to like that you have been put on replacement. (Even though you obviously needed it!) It will affect test results that they seem to so concentrate on even if you withhold dosage for 12-15 hours.
Its hard for me to make guesses, but I would suggest that if you cant wait for symptom reduction until after seeing the endo;
- Make sure your HC dosage pattern is as above
- Monitor your BP and if low take more florinef. (Salt cravings are often an indication that you should do this as well. Bloating and oedema kind of indicates your BP is too high with water retention.)
- If your BP stabilizes and you still get headaches and mood swings a HC dose reduction may help. Its hard to quantify such things though as too high cortisol levels can feel like too low under some circumstances. If you give me your height/weight I can tell you what the nominal dose size is. (And yes a lady should never reveal, but this is a special case..)
Questions to ask? Actually I think what will help far more is an understanding of how the adrenal system works. This so you can understand what the endo is talking about as well as get an idea of how competent! This will of course take time, which you may not have before the appt?
Tennis? Probably still be able to play. The treatment success of AI seems to vary a lot. There are some successful athletes out there that have it and at the other end people that are only just hanging onto life. MDJ of course tends to attract those that aren't doing so well, and many have made their own accommodations of a lower energy lifestyle. Personally I think that a low success rate is more a doctor mismanagement and lack of knowledge thing, but that is just my opinion!
Bob (Australia)
Please remember that accurate answers often need detailed source information. Please considering putting your DX status, drug dosage and other information into your "About Me" or Signature Line. That also includes what country you are in because measurement systems and diagnostic methods vary around the world.
