Dana
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Posts: 85
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Post by Dana on Apr 10, 2009 21:10:04 GMT -5
I just thought I'd mention my husband got his blood work and saliva test back today. His cortisol levels are ridiculous low. WAY WORSE than mine , so Laurie you were right about those symptoms could be from low too. My blood work isn't back yet.
I am truly shocked to see how bad his cortisol levels are. He is way better off than I am symptom wise. He can go target shooting for hours and be completely fine. I shoot 25 rounds and I'm trashed, can't even think let alone drive myself home. How is that even possible?
I converted his labs into the measurement that DTI uses. This is how it worked out. I think I did it right! 8AM -- 17 (13-24) Noon-- 0.386 (5-10) 4PM -- 1.35 (3-8) Midnight--0.275 (1-4)
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Post by justaustin on Apr 11, 2009 9:05:26 GMT -5
Hi Dana,
You can start another topic thread about your husband(if you want). Glad that the florinef is working.
Janet(CheMom) on the adrenal forum...is an engineer. She does these conversions in her sleep. ;D What don't you run the #'s by her. See if your calculations are correct. Send her a PM.
Laurie
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Dana
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Posts: 85
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Post by Dana on Apr 22, 2009 15:43:36 GMT -5
I am starting on the HC! I CAN'T WAIT! lol I really am this excited about it...*jumping up and down*
Blood results are back and I have no adrenal antibodies, IGF-1 was low in range and 17 OH Progesterone was slightly elevated, but the doc said it's not high enough to worry about.
I have a really stressful week coming up, so getting on the HC is music to my ears.
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dee
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Posts: 30
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Post by dee on Apr 22, 2009 16:53:36 GMT -5
Let us know how it goes. I'll probably be starting on it soon, too.
Good luck, Dee
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Dana
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Posts: 85
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Post by Dana on Apr 22, 2009 17:19:06 GMT -5
There is one really bad thing. The doc said to expect more fluid retention...My goodness. I've already gained 10 lbs from that and bought new pants a few days ago. We'll see what happens though!
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Post by justaustin on Apr 22, 2009 17:50:13 GMT -5
Repeat after me: It's a process. IF you get too much MC effect (with HC and florinef), one of two things can be done...switch to long acting medrol(as he had with me) and then You'd just get MC effect then from Florinef. Perhaps, Your MC effect might decrease with HC due to shutting down ACTH. There is no way of knowing.
The priority is improving your extreme salt wasting symptoms: extremely low BP,high pulse/passing out.... Those were dire.
The next will be addressing low cortisol. See my first paragraph. Finally, readdressing thyroid hormone levels. They could become lower. Low thyroid hormone levels can result in fluid retention and weight gain(lowered metabolism).
Just feel confident that this doc is in top of it. Things are being addressed in the proper order. So many of us have had to back track due to doing things in wrong sequence(not knowing better initially).
He's going to work with you. He will not give up on you. Your health is first. Appearance is not the top priority(not now).
Chin up! Laurie
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Dana
New Member
Posts: 85
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Post by Dana on Apr 23, 2009 15:53:07 GMT -5
When I first tried the HC a few years ago, I remember my salt wasting symptoms got so terrible I couldn't even stand up. Now that I started the HC, I have a feeling that this dose of florinef won't cut it but we'll see!. He had me immediately start on the 30mg of HC today. No ramping up or anything. He told me that he has seen too many people crash while ramping up that it doesn't do much good. After today, he wants me to email him to let him know how I feel.
I am definitely not as tired today as I have been. I might be slightly jittery, but my hands aren't shaking so that's a really good sign. Usually my hands tremble around 4-5PM and it's always a terrible time of the day for me. This is when I'm reaching for the sweets and caffeine.
One thing I've noticed right away is that I am NOT craving caffeine or sweets at all today. I had a small cup of coffee this morning and haven't even thought about having more. That's a very good sign because I practically live on caffeine.
By the end of this week, I will know how the florinef is working. It's supposed to be 80 degrees and we don't have the air conditioners in the windows. I am very curious and frightened to see what happens. He doesn't want me to increase the florinef again until we know the HC dose is OK.
There is one thing I noticed today. Just before I needed my next pill, I became extremely thirsty. I could barely even talk it was so dry. I will definitely mention this to him when I email him tomorrow morning.
I still feel I am constantly battling dehydration even on 1/2 tab of florinef a day. My BP is still dropping and HR increasing when I stand up.
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Post by justaustin on Apr 23, 2009 16:01:06 GMT -5
I'm sure Dr. L. wants to see which way you'll respond to HC(with respect to salt wasting). You can go either way. Given your history, it's likely that it might get worse with shutting down ACTH.
As mentioned, Dr. L. doesn't like making too many changes at one time. Otherwise, you'll not know what is responsible for a particular response.
I remember craving chocolate when my cortisol was at it's lowest. I still have caffeine cravings, but I'm drinking more water(and it's holding me).
To get the most from your florinef, be sure to drink sea salted water with it. Aldo also drops naturally at night. For some, this can be a very difficult time. Some need a dose of florinef at night and/drink salted water.
That's great news all in all(you and your husband)!! Laurie
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