Sorry I haven't posted in almost 3 months. I will come back and fix that soon, but for now I'll just give you a quick update. I had taken some bloodwork for both Dr. L and my PCP. Everything is still the same. My cortisol is still less than 2, my ACTH is still too high for my liking, my IGF-1 still hasn't come up to normal range and everything else is "normal."
I'm feeling fine, but still have worries about my ACTH. Can't stop that. Only thing that will help IMO is the CST that will get done in a month. I'm going back to Seattle for my 2 yr checkup Nov 8th. While I'm there I'm going to see the Harry Potter Exhibition. Can't wait - for both things.
I will update all the dates prior to this soon!
4 comments:
Hi there,
So you said that you have had two pit surgeries? My son (16) had his 1st surgery Oct 1, 2009. We have been waiting for 24 urine and midnight cortisol test to come back and today we got the news. Both are high again and we are waiting for an appt with the surgeon to get another MRI. I would love to talk to you about your case. How long between surgeries etc... Hope to hear from you. Amber Mulnix, Walker, IA
Hi Amber! Sorry I'm just now seeing this! Yes, I had 2 pit surgeries 3 days apart. The doctor I went to in Seattle, likes to see cortisol levels after surgery go under 2. Mine was 0.9 at 3am in the morning when previously that was when I got my highest levels. But sometimes with cyclical cushings that doesn't matter. But seeing a cushings specialist helps. Are you on the cushings-help.com board? Because you can get a lot of information there if you are not.
Otherwise you can email me at caspers_love at yahoo.com and then you can ask any other questions you may have. :) Just put Cushings in the subject.
Hello,
Don't know if this is the correct way to get in contact with you; sorry if not. I found your website after seeing a post you had put on the cushing's website. I noticed you had two IPSS procedures? Was your first IPSS negative for pituitary source? Per Dr. F I am off for a second IPSS. The first was negative for Pituitary source but based off of my dex test and all other results, he feels it is a high probability of pituitary. I can't help but be negative. Everything I read says that the IPSS procedure is close to 100%. I have had everything looked at for a ectopic source and nothing found. Dr F is positive I have cushing's based off of my numbers I have done a TON of tests. Every single cortisol test has been high. I would love to hear more about your IPSS tests and how they found yours. I should note that my two pituitary mri's were read as normal but was sent to a neurosurgeon who saw a possible legion. I would love to talk to you and hear from you if you have a chance. You are the first person I have reached out to since my long miserable journey.
Thank you much!!
I was testing with local doctors and I had high ACTH even tho my cortisol levels were "normal." So I saw a neurosurgeon who said I needed an IPSS. They said they could do it, but had only done less than 10 previously. (That should've been my first clue!!) I think honestly, they did it wrong. I think they didn't know exactly what they were doing and it just came out "inconclusive." They told me to wait it out.
So I went ahead with the recommendation on the board and went to see Dr. L in Seattle. He said my numbers were all over the place and recommended an IPSS too. His guy has done thousands and sure enough, it came up very high on the left side.
So that said, I think it just depends on who does it and if they truly know what they are doing and how to interpret the results. Hopefully Dr. F can recommend someone to do it for you and then just ask how many they have done. Hopefully it gives you the results you need/want!! Let me know how it goes! :)
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