I have a few different problems. First I have intracranial hypertension. Then I have empty sella syndrome. I just had blood work done at my endo doc and he said my ACTH level was 10 and Cortisol level was 4. He said I needed to go on hydrocortisol. I also have anxiety and any stimulant will send me off into a anxiety attack. I have also read that steroids were bad for people with intracranial hypertension. I have low blood pressure at times. I sometimes can drop as low as 89/46. Lately it has been staying around 100/68. I am getting a MRI next week for the empty sella. I am going to get a second opinion on May 8. Is it true that if you had a MRI or cortisone shots before your blood work it could mess with your levels. Because I had both before my blood work. I had to get a MRI and also a two seriers of cortisone shots in my arm for a frozen shoulder. Can anyone help me with this process and what should your normal levels be for ACTH and Cortisol. Thanks.
ACTH and Cortisol will vary. ACTH pulses as it comes up as it is needed. Cortisol should vary by the time of day so one test if not an accurate view of your entire rhythm.
The normal diurnal or circadian rhythm is that cortisol reaches its peak at around 8am, falls throughout the day to roughly half the morning high around 2-4pm. Cortisol continues to fall to near zero by midnight to allow a person to sleep. The cycle happens daily.
Since you have empty sella, your ACTH will not come out and stimulate the adrenals to secrete enough cortisol. In times of stress, the pituitary will release more ACTH so that more cortisol comes out temporarily to meet the needs for illness, physch duress, etc. That is why you must learn how to stress dose.
You are going to be taking a replacement dose of hydrocortisone, not a therapeutic dose. You are going to replace what the body needs and if done correctly, if should not do damage.
The low blood pressure is connected. You may need an additional medication called florinef as well as you need salt. Salt your food, buy and take salt tablets and carry them with you. Salt will get you out of a lot of issues. Look at websites for Addison's and read up on the diet, emergency kit, stress dosing and get familiar - your life depends on it.
As for the steroid shots... they are not great, but it depends on the timing of the shot and the blood work. And if the shot was really hydrocortisone or if it was a longer acting steroid. You need to be aware that HC is a short acting steroid and other steroids are are long acting - they tend to do more damage in the long run if taken on a long term basis but as a shot will reduce inflammation.
If you had contrast before blood tests, it should have been ok - your doctors were aware when you got the tests and should know if it has an effect. As I said before, one set of tests is not good and multiple tests is what anyone needs.
Thanks for that. That helped alot. I never have contrast with anything because I am allergic to contrast. I have only ever had my ACTH and Cortisol levels checked once.
What I had injection for was cortisone shot twice for a frozen shoulder and I forgot to tell my endro. I decided to get a second opinion and go to a different endro on May 8. I am going to ask for a 24 hour ACTH and Cortisol level. By then I will have my MRI done (get it done today) of the empty sella and I will have other blood work I have had done from my PCP and the first batch of blood work done from the endro faxed to the new endro. I was on long acting (5 years or so) progestrone for fibroid tumor to control heavy bleeding. I am going off of that for awhile to see if the bleeding has subsided any. I am not sure if that will help. I noticed my menstrual cycles have slowed down. Since I am 51 I have to be headed towards menapause at some point. I am fixed so I dont have to worry about pregnancy.
The 24 hour cortisol level will not be accurate due to the progesterone as the progesterone will bind to the free cortisol. The test will come out lower. Your endo may or may not know that. Isn't testing fun? Does your endo test CBG?
I went off the progesterone a few weeks ago. I am going to see how I deal without it. If I can deal without heavy bleeding there will be no need for it. I will ask my endro if he/she does CBG testing. I am going to a new endro on May 8 for a second opinion. Testing is wonderful. (NOT REALLY). ;) Thanks for all your advice. You have been helpful. Keep it coming.
Every lab differs. So It is hard to say what the normal levels are. Just make sure you go fasting, 8am draw and make sure the tech does the ACTH right - EDTA tube, spins it right away and promises to freeze it promptly. Mine drops 800 points when they mess it up (my ACTH is 2330 and the range is 5-27 at my lab and I got a icky tech and my last one came out as 1551... boo) so knowing all this is critical. Renin is also fussy.
Hopefully all the progesterone is out of your body - my endo likes to wait 6 weeks.
Testing bites - I still have to do it all the time and I am post op... it just never ends....
Thanks. I will keep in mind what lab I go to since one lab tend to mess up their results. Though I did not go to that lab with the first results. I am going to wait until I go to the May 8th second opinion to ask them for new testing so hopefully the progesterone will be out of my system by then. That should bring up to a well over 6 weeks. I always fast when I do blood work. Thanks.
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