I have a question regarding Cortef. I'll try to make this as short as possible. I was put on 5 mg Cortef X 4 a day in May due to extreme adrenal insufficiency. A saliva test indicated some cortisol output in the morning than practically none the rest of the day. I also went on bioidentical hormones and after 2 weeks weaned myself off the Cortef as I felt I did not need it. The hormones I was put on were too high - transdermal 100/200 mg progesterone and 2.5 mg testosterone a day. At first they helped but then they put me over the edge. The doctor refused to listen to me and insisted the dose was right so I switched and I am now working with a compounding pharmacist. Becuase the dose had been so high I had gone off the transdermal for 3 weeks. During that time I was really struggling with fatigue, depression, abdominal distention, and fluid retention and started back on the Cortef.
When the compounding pharmacist started me on progesterone cream and some testosterone I weaned myself off the Cortef in 7 days (I was taking 10 to 15 mg a day). I had just had 4 days without fluid retention and abdominal distention and the day it all started back up incidentally was the day those two symptoms came back. I also had increased pain and 4 days later I went back on the Cortef (10 mg a day) again and decided to wean myself off of it more slowly. That was 13 days ago. I was down to 5 mg a day and Tuesday I actually felt I did not need it anymore. My energy is much better, I am not so depressed, and in general I feel better. However, Sunday and Monday I once again had relief from abdominal distention and fluid retention. Tuesday morning I did not take the Cortef and the fluid retention and abdominal distention came back. I took 5 mg in the afternoon but nothing changed. Yesterday I did not take any Cortef and by early afternoon the fluid retention was even worse.
So I am wondering, is this a coincidence or could there be a correlation with stopping Cortef and having more fluid retention? And if so, would it happen that fast, like within a few hours? I would rather not stay on because I feel it might be putting my arenals in overdrive. When I take it, even at 5 mg a day, my pulse is about 10 beats higher per minute than it normally is and when I drink my green tea or decaf I get a nasty sweaty smell. The two days I have been off of it those two symptoms have come back.
What kind of tests were done with the saliva testing? Was it a full panel on the thyroid - adrenals and female hormone testing?
What levels of cortisol did you measure out at - ( morning - mid day - early afternoon and evening)
You're still taking the compounded creams right?
I know sometimes using the HC can be a bandaid approach to other hormonal imbalances or deficiencies. The thyroid and adrenals talk very strongly with each other and if your adrenals are being lazy then your thyroid could be too.
The symptoms you are having - sound in conjunction with symptoms of thyroid under production too.
Taking a guess on this - the swinging back and forth on the cortef may be halting your body overcoming your symptoms and going off and returning back on it - coud be halting the release of cortisol then dumping again.
Are you supplementing with sea salt along with the HC?
Why did your doctor put you on such an odd regimen of cortef? A normal body reaches a peak around 8am, falls throughout the day to reach roughly half around 2-4pm, then keeps falling to a low around midnight. Taking it 4 times a day would be weird for a body. 20mg total is a replacement dose (I have no adrenals, and that is what I take) and to take it like that would drive my body nuts.
I take 15mg at 7am and 5mg at 2 or 3pm. I take salt tablets and florinef (fludrocortisone) to keep my BP up) but it takes balance or like you said, you get puffy. Ironically, I need more salt or I get puffy. You need fluids even though you do not think you do - your body is holding as it thinks it does not have enough and does not want to give any up.
And as Stella said, you need to get your thyroid checked too. I would also say all of your other hormones - the endocrine system is a system and when one goes out of wack, many do...
Hi - thank you for the replies. I am on 180 mg Armour thyroid. With that does my thyroid labs come back fairly good. The saliva test in May only measured cortisol and DHEA. My morning cortisol was 3, then 0 at lunch, mid-day, and evening. I have much improved since then.
I get about 1 to 1.5 tsp of celtic sea salt or himalayan sea salt a day. I agree that going back and forth on the Cortef is not good. My plan is to stay on 5 mg a day the next two weeks while we are on vacation, then cut back to 2.5 mg a day for maybe a week, then go off of it completely. However, I come up with a plan like this, then I change my mind, or something happens, etc. and I take more or less and there is no consistency.
You have to take care of you and stay consistant. Only you can improve the situation,
I would assume with your cortisol levels - you thyroid medication is not responding optimal either. You need to get on a balance so the adrenals can preform better to regulate the rest of your endo system.
Try upping your salt to 2x's a day. Watch your BP. Use your script HC as it is written - I think the above dosages throughout the day is the right way to take it.
You must be running on nothing by lunch time. You have to get those levels up higher in the day and decrease them at night.
What was your reasoning to ween off the HC while taking progestrone? just curious.
I need to correct my original post - my prescription was 10 mg AM, 5 mg lunch time, and 5 mg afternoon or evening. When I started it I wasn't on any other hormones and felt awful. But shortly after starting it I felt it was too much. I felt WAY too hyper, elevated resting pulse, and more. Then I started the hormone cream and felt I didn't need it anymore and actually felt great without it and just using the hormone cream. However, the hormone cream was dosed too high (it had 2.5 mg of testosterone per day) and after working nicely for about 2 months sent me over the edge. I started working with a new doctor who agreed that 2.5 mg test is way too high and probably 90 % turned into estrogen. He suggested I go off completely for a few weeks and then get tested to get a baseline. While being off the cream I felt even worse with fatigue, abdominal distention, fluid retention, etc. and since I still had some HC I started back on it a few days, then back off.
I had a saliva test to check adrenals X4 a day and also estrogen, progesterone, DHEA, and testosterone. All levels were low on the sex hormones, but the cortisol looked almost perfect. My evening cortisol was on the low end of the normal range. However, due to my symptoms which are very consistent with adrenal fatigue and a lot of stress in my life, the lab indicated that my adrenals are probably working incredibly hard to keep my levels normal. The doctor I am working with also said that it could be that I happened to have a good day that day regarding my adrenals.
The hormone cream is supposed to help with adrenals and I would rather use it than HC. I think I actually need to up my dose of the progesterone since it's a precursor to cortisol so I think a lot of what I am getting in my cream is shunted away for cortisol.
there's more - even though I have symptoms of adrenal fatigue, I sometimes feel even 5 mg HC in the AM is too much. My pulse speeds up, sometimes it feels like my pulse is beating inside my head because I can hear it really loud, and I have shortness of breath. No doubt my adrenals need help but it almost feels like the HC is putting my body into ovedrive. It's also not helping with the fluid retention now so maybe it was just a coincidence that the fluid retention got worse after I went off. In addition I have breast tenderness now so I think the fluid retention is probably from estrogen dominance.
Hi Kania.......I'm new.......just read your posts........first.......about me........I was diagnosed with Addison's disease in 1978........and have been on a maintenance dose of hydrocortisone of 20 mg/ am.......10 mg/ afternoon......and florinef.........this for 30 years.....I only say this because after hearing how you seem to want to regulate yourself..........my advice to you is........see the best endo man you can find........get the right blood tests for adrenal and thyroid function.......then......pay attention to what he says as to how to treat it........and continue with what he says to do...........stop regulating yourself.........depending on how you feel any given day...........if you feel something is wrong.........insist on a blood test to tell you what it is and stop starting and stopping your medication at will......I clearly see this.........as your biggest problem.......I do know how hard it is to find a competent doctor.......but once you do.......do what HE says.......not what you feel you should do.............I hope I haven't offended you......my purpose is only to help..........you have my very best wishes that your endo problems be resolved.......and you begin to feel yourself again...........peace and love.......Norma
I think you pretty much found the issue in reading your comment back.
Here you say -
"I had a saliva test to check adrenals X4 a day and also estrogen, progesterone, DHEA, and testosterone. All levels were low on the sex hormones, but the cortisol looked almost perfect."
I am no doctor- but if the levels were low on the sex glands and the cortisol looked good - the HC scripted to you may have been the "bandaid" approach to see if that would relieve your symptoms. It didn't so you went off and felt better.
Did I read that right?
It seems no one moved forward on looking deeper into other issues that could have been causing your adrenals to work harder - It sounds at the time you ran tests that your adrenals were adjusting to the added stress to keep your cortisol levels in check - but that is not good in the long run either.
A simple start to repair the adrenals - if there is depletion - is to start a regemin of sea salt and water 2x's a day. You have to find the right doctor to support this and discuss this with you in depth.
Is one of your symptoms craving of salt? If that is the case - then that can be thought that adrenal distress is happening.
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