Sorry I've been away for a little bit. My husband and I traveled out to the eastern side of the state to see a doctor that was recommended to me. The trip was a lot worse than we were anticipating, but we made it there and back in 1 piece.
I am very happy with the new doctor. He isn't convinced that I have a pituitary disorder and has diagnosed me with primary adrenal insufficiency, hypothyroidism and low aldosterone. I'm not really sure how I feel about it, but I really don't care anymore. I just want to FEEL better.
Honestly I am just too tired right now to rewrite my thoughts about the doctor, so I am just copy/pasting my post from the Hormone Support group. We went target shooting today and I am wiped out.
"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 for 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 from the Hormone Support group 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!
This doc loves unique, complicated and bizarre cases. It seems like my case was pretty easy for him to be honest. 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)."
Today I started on the 1/4 tab of Florinef immediately following the blood work. I don't feel much of anything--good or bad. Still thirsty, still peeing a lot and still feeling lightheaded when I stand up. I definitely think I'll need a full tab to feel better, but I intend to follow his instructions exactly.
5 comments:
That's great you found a new doctor who has some ideas. Good luck!
Hi Dana
Sounds like a good doctor's visit! Interesting what he says about high progesterone (which I also have). It will also be interesting to see if your DI resolves on proper adrenal support. What thyroid treatment is he putting you on?
It's probably in your story, but how many amalgams did you have? Did you have any signs of adrenal fatigue before you had amalgams? I am finding it pretty tragic that someone as young as you will have to be on adrenal meds indefinitely.
Anyway, hoping that you have found the solution to your problem.
Nicola
I had 8 amalgams, but as a child almost every tooth had an amalgam in it. I was in the dentist office every week with something new. My dentist as a child did not care about the dangers of amalgam/mercury. He thought it was the best thing ever. Pieces fell into my mouth all the time and I have a huge amalgam tattoo from that idiot. Even though I only had 8 amalgams as an adult. I had a ton of exposure as a child too.
I've had low aldosterone/adrenal symptoms since the age of 17. This was the same time when I was dx with epstein barr virus and was anorexic.
I almost died at an amusement park from an adrenal crisis at 18, which I didn't know at the time was an adrenal crisis. I fell down on hard pavement and went unconscious for a little while. My friend picked me off the ground and rushed me to the first aid. I guess I walked there, but the details are fuzzy for me. My BP was 60/40 and I slept in first aid for 4 hours (or something like that). I am really lucky I lived through that. Since that day, nothing has ever been the same and that was the last time I have been to that particular amusement park. That event was so traumatizing to me.
That day started the severe, debilitating low aldosterone symptoms, but I didn't know what they were. Doctors just told me it was because I was skinny. I am still told this now when I go to PCPs.
As for thyroid meds, I am not on anything yet. I assume he'll put me on armour, but he's hoping that if I can get the AI in check that the thyroid won't be so confused going up and town like it is now. We'll recheck levels again once I am stabilized on florinef and HC. That's probably going to take a while. :-)
When I started this blog, the thought of being on meds my whole life was unbelievable. But now, I am completely OK with it. After all I haven't been living at all. I've been just getting by and that's not a good way to live life.
I'd like to be well enough to have a kid or two someday in the next 10 years. ;-)
Oh I forget to add about the DI.
The diabetes insipidus symptoms might simply be low aldosterone symptoms. We will only know once I am optimized on florinef.
Dana
that's my feeling too (that the DI is in fact a dire need for Florinef). Fingers crossed that this resolves and you have continued improvement.
Nicola
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