Post by Dana on Mar 31, 2009 21:37:47 GMT -5
Here's an update after seeing the doc in PA that was recommended to me by Laurie (justaustin). This is a partly a "review" and what he said to me.
He dxed me with adrenal insufficiency (primary), hypothyroidism and hypotension.
There are a handful of labs he wants me to get before I start on Florinef and HC. He wants to check for adrenal antibodies and wants to see rule out elevated 17-OH-progesterone. The high saliva progesterone levels piqued his interest and says I may be deficient in the enzymes that create cortisol. He said the saliva test might be picking up this form of progesterone. Typically though a woman would have increased hair growth with this condition, but he just wanted to rule it out. It sounds rather interesting, so I say why not check it?
He also wants to investigate why my potassium is chronically low even with a good diet with fruits/vegetables. He said he might send me to a nephrologist to investigate this further, but wanted to see what happens on florinef. He told me he has seen patients potassium levels actually go UP on florinef, which he admits doesn't really make sense. I have a blood sheet ready if I start to show symptoms of low potassium and wants me to check this immediately if that happens to see what my electrolytes are doing. He tells patients that foods are the best way to get potassium and that's what he usually recommends.
Once the blood work is done, I am to start on 1/4 tab of florinef and go from there. He told me to not raise it any faster than 1/4 tab every 2 weeks. At 2 weeks take 1/4 tab twice a day. Ultimately he told me once I hit 1 tab, to start on the 30mg of HC. 10-10-5-5 dosing schedule. He said the bedtime dose may prove to be important in me since I wake up every single night (around the same time). He said he starts everyone at 30mg now because at lower doses he has seen people crash very hard and says it's better to have too much HC for a short period of time, than being under treated. He says, that my ACTH will be suppressed with this dose and that we'll have to watch my DHEA and other hormones. He told me the reason why my salt wasting symptoms got worse on 20mg HC was because my ACTH was suppressed causing the already low aldosterone to fall even further.
This doctor was quite knowledgeable. He certainly contradicts some of the things that Chris goes by (low potassium, low sodium, low renin means secondary AI, ACTH<50 is secondary AI), but at this point I'm just glad to have a doc prescribe me florinef. I might have been able to get my other doc to do it, but I really trust Dr. L. He is only an email away too, which is just awesome!
Laurie is right. This doc loves unique, complicated and bizarre cases. It seems like my case was pretty easy for him to be honest. If any of you have been following this thread, rest assure that he will be able to help you. If you don't have any labs to go by, he will order them for you and will put the diagnoses codes on the papers so it can be covered by insurance. He has saliva test kits in his office (from Labcorp) and will give you one if needed. I had 2 saliva tests from Diagnos-Tech Inc and that was enough for him. The results were almost identical and he felt pretty strongly that I was having serious adrenal problems (combined with my symptoms).
I am very happy with him and the office manager is wonderful too. It's pretty hard these days to find an office with happy people, but the office manager was actually genuinely nice. I was pretty amazed. She knew everyone's name that walked through that door. Even people who weren't locals seeing the doc.
He dxed me with adrenal insufficiency (primary), hypothyroidism and hypotension.
There are a handful of labs he wants me to get before I start on Florinef and HC. He wants to check for adrenal antibodies and wants to see rule out elevated 17-OH-progesterone. The high saliva progesterone levels piqued his interest and says I may be deficient in the enzymes that create cortisol. He said the saliva test might be picking up this form of progesterone. Typically though a woman would have increased hair growth with this condition, but he just wanted to rule it out. It sounds rather interesting, so I say why not check it?
He also wants to investigate why my potassium is chronically low even with a good diet with fruits/vegetables. He said he might send me to a nephrologist to investigate this further, but wanted to see what happens on florinef. He told me he has seen patients potassium levels actually go UP on florinef, which he admits doesn't really make sense. I have a blood sheet ready if I start to show symptoms of low potassium and wants me to check this immediately if that happens to see what my electrolytes are doing. He tells patients that foods are the best way to get potassium and that's what he usually recommends.
Once the blood work is done, I am to start on 1/4 tab of florinef and go from there. He told me to not raise it any faster than 1/4 tab every 2 weeks. At 2 weeks take 1/4 tab twice a day. Ultimately he told me once I hit 1 tab, to start on the 30mg of HC. 10-10-5-5 dosing schedule. He said the bedtime dose may prove to be important in me since I wake up every single night (around the same time). He said he starts everyone at 30mg now because at lower doses he has seen people crash very hard and says it's better to have too much HC for a short period of time, than being under treated. He says, that my ACTH will be suppressed with this dose and that we'll have to watch my DHEA and other hormones. He told me the reason why my salt wasting symptoms got worse on 20mg HC was because my ACTH was suppressed causing the already low aldosterone to fall even further.
This doctor was quite knowledgeable. He certainly contradicts some of the things that Chris goes by (low potassium, low sodium, low renin means secondary AI, ACTH<50 is secondary AI), but at this point I'm just glad to have a doc prescribe me florinef. I might have been able to get my other doc to do it, but I really trust Dr. L. He is only an email away too, which is just awesome!
Laurie is right. This doc loves unique, complicated and bizarre cases. It seems like my case was pretty easy for him to be honest. If any of you have been following this thread, rest assure that he will be able to help you. If you don't have any labs to go by, he will order them for you and will put the diagnoses codes on the papers so it can be covered by insurance. He has saliva test kits in his office (from Labcorp) and will give you one if needed. I had 2 saliva tests from Diagnos-Tech Inc and that was enough for him. The results were almost identical and he felt pretty strongly that I was having serious adrenal problems (combined with my symptoms).
I am very happy with him and the office manager is wonderful too. It's pretty hard these days to find an office with happy people, but the office manager was actually genuinely nice. I was pretty amazed. She knew everyone's name that walked through that door. Even people who weren't locals seeing the doc.