ACTH results confusing. Very frustrating (would like to scream right about now)!
I would appreciate any feedback on this because I am so frustrated here. My endo is not the best and I've known this for a while here because of many things she has missed, so I will be dealing with my GP from here on out but this has me stumped. I have been feeling exhausted and of course my thyroid levels rose again so I realize that part of this is the reason. My cortisol was 3.9 so they were concerned and sent me for an ACTH Stim test. My baseline was still abnormal at 7.1, but my levels were good once I received the injection (went up to 38). She is pronouncing me normal now because after the injection my levels rose. I also noted that oddly enough I felt better than I have in a long time after the injection and had more energy and lots of things felt more stable.
If my baseline is STILL not normal until I add the ACTH cocktail, then I don't understand how I could be pronounced completely normal with no adrenal insufficiency. I am seeing people complaining about this kind of thing all over (that some endo's dismiss the obvious ) so I am asking if anyone else has any ideas on this. Obviously I have some adrenal insufficiency if I need that injection to give them what they want otherwise twice now it's been quite low! This just makes me crazy here It's insulting as well as being frustrating. The test was not fun and we had to take off work to do it so now her answer is maybe we can run it again with a lower dose of the ACTH to see if I have partial deficiency and like hello...I think that's obvious at this point and to take another day off work to go through all this again is insanity. She said because I am concerned, she will send me a slip to run my serum ACTH by itself (should have ordered that initially) but that it may not show us a lot. I want to wring her neck to be honest. OBVIOUSLY my body is not producing enough ACTH on it's on or I would have had normal levels twice instead of abnormal until I received the injection, so would this not denote that I do in fact have a deficiency? Help!
Apparently there is no ACTH drug you cab just take but obviously my body is lacing this hormone so I wonder what the protocol would be if they do find what I suspect and that is that my ACTH will be low. Any ideas and has anyone else had their baseline be low and the ACTH come out normal and what did you do? Thanks in advance for any help you can give me here! :)
Well, it SOUNDS like you may have secondary adrenal insufficiency, and the primary problem is the pituitary, but surely the endo would have thought of this?
If your ACTH comes back low again, you should have an MRI of your pituitary, or did you already have one?
I was thinking the same thing. This is probably related to the Pituitary and when I mentioned this to her, she said that she doubted that. I said that it made no sense that my Cortisol would be low every time we test it except for the one time that I received the ACTH injection and then and only then, it responds. My GP has me going for an MRI with contrast next Friday of the head and neck so I am very nervous actually. They wanted to take a closer look at the nodules found in my thyroid from the ultrasound I had and looking at the two lymph nodes found in my neck and the Pituitary as well so I guess I will have quite a few answers then. I'm scared because I am a breast cancer survivor and you are forever looking over your shoulder. If it wasn't for my GP, I would never even have this MRI scheduled so I think I am done with my Endo. I already mentioned my feelings to the GP and she was very understanding and said that she had no problem continuing my prescriptions through her or that she could order the follow up blood work every 3-4 months instead of the endo.
What I don't understand is how careless these doctors can be. I'm just a layman and even I know that if my Cortisol level is low every time we test except for the one time I get an injection, OBVIOUSLY there is a problem so for her to pronounce me perfectly fine was disappointing and infuriating. First she tells me we have a problem because my Cortisol is very low and it was still low when I went for the second test at the baseline but now I am OK because the injection helped me to make the levels right? It's like all she had her mind on was Addisons without looking at any secondary problems (Addisons is not the only Cortisol related disease). If I have headaches and suddenly feel better with Advil, that does not mean I still don't have a headache problem because the Advil made it go away for a while!
I also felt better than I had in a very long time after that injection which made no sense at the time but now I see the connection. My body is obviously lacking the ACTH level it needs to get my Cortisol going and if it only goes well after an injection, there is a problem. I don't know what I would need to take though. I mean would I need HC for low ACTH? It's all so confusing. I may look into a good OTC type supplement.
She does not want to order tests for Aldosterone or Renin thinking I would not need those so I may ask my GP to order them to be on the safe side. I know one things for sure, I will not be returning to her again. I would have to be mentally challenged to not see that she is a waste of time. :(
My son takes hydrocortisone for secondary adrenal insufficiency. I suppose that is the medication of choice, at least with the endos. My son is also growth hormone deficient, so I'm not sure sometimes if his fatigue is from not enough hydrocortisone, or not enough growth hormone.
It sounds like you've given your condition a lot of thought and study. Pay close attention to your symptoms and how you feel in the coming weeks. Write a list for any future doctors. They seem to remember what they see, better than what they hear, from patients.
I hope they don't find anything on your MRI. Well, you know what I mean.
RUN BACK TO THAT ENDO AND GET YOUR TESTS - BEFORE YOU FIRE HER!
Keep a history on all your labs - This will be so important to keep for yourself. Your GP sounds very concerned and hopefully run more testing on the pitutiary also.
As you know the TSH is the Thyroid Stimulating Hormone that actually comes from the pitutiary sending the signals to the thyroid to produce more or less hormone - so I think checking that out would be very good.
Personally since my thyroid whacked out - I had nothing but nightmares with the so called specialists called endos.
I am sure I would need to find one if I get a DX of thyroid cancer or pitutiary issues - but adrenal fatigue or basic thyroid observations failed for me with these type of doctors.
If I didn't fit the profile of let's say "Addison's" then I had no issue with the adrenals. - even through I had abnormal testing on cortisol values. Same applied to my thyroid - since I decided to switch medications to Armour - I was ousted too.
Very frustrating since I feel so much better now after all the years of following what they made me do and kept me very ill.
AND now that I do feel better - they still ignore the protocal I am treated under and "refuse" to even think this is why I do feel good!
I find it insane and scarey - because if I ever need let's say an emergency happens and I am hospitalized, I may find that they may not comply to what has been keeping me well as proper treatment.
Your endo has not a clue.
As stated, get a copy of your stuff, find another.
ACTH and cortisol work in a feedback loop. ACTH tells the adrenals to release cortisol and the pit also senses how much cortisol there is and then shuts off the ACTH - they both have to work.
ACTH is also a very very fussy test - I have had techs use the wrong color tube (it has to be an EDTA lavender topped tube), ideally the tubes should be cold to start out with since ACTH degrades so fast and they need to spin it pronto - if it goes into a bin and you leave with it in the bin - your results and in the tanker - lower. My ACTH rght now is over 2000 - if the tech argues and does her own thing - my results can vary by over 400 points and the range is only 4-27! Renin is the same. It is just as fussy.
You need to get copies of everything, find another doctor. Get different testing and find someone who knows adrenals.
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