Low cortisol

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I am 43 have struggled all my adult life with fatigue, managed it better when on contraceptive pill. No longer allows to take, I have struggled for 8 years off of it. 

I have had several blood test showing low cortisol , 195, 222 303 etc. 

I have had three sub optimal sst tests. 

My latest results were 393 at 9 am 452 after 30 mins. 

No adrenal antibodies found. Addisons ruled out 

MRI and ct scan show nothing despite 

severe pain in my right flank and right lower abdomen. I produce a huge amount of progesterone but this doesn’t appear to bother doctors. I am exhausted all the time and very skinny and bp is low. 

I have sweats at night and a feeling of anxiety. 

I have looked up Candida and wondered if this could cause or is caused by adrenal function. I think I have it despite a healthy diet. 

Any thoughts would be much appreciated. 

Thanks Louise x

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  • Posted

    well you might have secondary adrenal insufficiency

    which is usually caused by a pituitary tumor

    if your cortisol is low, should test

    acth and confirm adrenal insufficiency

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    • Posted

      I am back to see my endocrinologist ina. Couple of weeks. They seem to just say you can take hc but it’s up to me. 

      I would prefer not to once I read the side effects. It’s a very hard decision. Would be better if she said you have to take it!! 

      I will keep you updated. 

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    • Posted

      Louise,

      I have been in the same situation. If you take it for 6 months only and not more than 20 mg/day, your adrenals can recover from adrenal insufficiency. Then you wean off HC slowly, 2,5 mg. every month until you  get to 0.

      The problem is if you have Addison's disease. Then, it is a different story. You should try very hard to have a diagnosis whether you have it or not. That's difficult as well. If you have Addison's, and you get a cold or go to the dentist, or get an infection, you have to double the amount of hc you take, for to days and after that just take the 'usual amount of hc. I had 3 pneumonias in 4 years because I did not know that... and my colds became pneumonias. Or the flu, also becomes a pneumonia. Try to get a DIAGNOSIS for Addison's. Make sure the antibodies test has been well interpreted...

      I cannot help you to do that because I cannot interpret my own blood tests very well. Only the thyroid ones.

      Keep in touch

      monsie 

       

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    • Posted

      hi Louise

      there are two types of adrenal insufficiency

      primary- Addison's

      secondary- pituitary and hypothalamus

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    • Posted

      Also the medical litterature states that

      if you have high ACTH- most likely Addison's

      low and normal ACTH-most likely

      secondary adrenal insufficiency

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    • Posted

      ACTH is a grey area as I call it. Mine is a bit below or above the range but doctors are non-commital, that is to say, they give you the test page, but make no comments...  in theory is very good, but you need a doctor behind the theory to 'explain'... do you understand me? 

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    • Posted

      I sent you a reply yesterday Sunday in Australia, but it does not appear anywhere. I had not made a copy. It is Sunday in UK today, let's hope you get it if it does not appear, I'll try to compose it again... It will be interesting to see what the endo says in the next visit.

      monsie

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    • Posted

      It is nice the reply from 24 hours ago has appeared !!!

      It is at the bottom of my list of replies...

      Here is 7 am Tur and you must have 8 pm Monday I think.

      monsie

       

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  • Posted

    Hello Louise

    It is hard to deal with this low cortisol thing... are you taking any medicacion? how much? since when? which medication are you on?

    Have you been checked for hypotothyroidism? Have your levels of ACTH been tested? If your levels of ACTH are normal, then you have primary adrenal insufficiency.

    I the MRI I guess they checked if you have a pituitary adenoma. It seems you do not have one, so you do not have secondary adrenal insufficiency.

    Anxiety can be caused by low cortisol. My partner has had lots of it. Your results were low, almost exact to mine. ( I have been taking Hydrocortisone (HC)).  

    I cannot comment on progesterone because I have not been checked for that.

    As for the sweating at night, I have them too and my partner. But I am not sure if it is low cortisol. Have you been diagnosed with adrenal insufficiency?

    Candida is a different think and eating the right food is good but, I think that Candida is a deeper think, not only caused by eating the wrong food.

    I hope to have helped a bit... 

    keep in touch

    monsie

     

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    • Posted

      Hi Monsie

      I don’t take any medication only a herbal supplement to help me sleep and to stop the jumping as you nod off. If you have low cortisol I am sure you are familiar with these. 

      I am sure my right adrenal  is the problem , think my pituitary is ok. 

      I am back to see doctor soon to decide on hc, would prefer not to but may have to try. I would just like to find out why!! 

      Will let you know. 

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    • Posted

      Forgot to ask do you and you boyfriend take hc, if so has it helped, do you lead normal lives on it? 

      Thanks. 

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    • Posted

      I need to tell you that I am an elderly lady, looking 15 years younger because from when I was your age I have tried to eat the right food, and I have taken supplements.

      I do not jump when I nod off. I never had that or read about that... Here in Australia where I live I am having the following experience:

      After I was diagnosed with Addison's disease, doctors did not want to prescribe me hc. I had to buy it on line. 

      After 2 years taking it and trying to get help as how to wean of hc, I do not fin any doctor (I have had 7 different ones)  who wants to help me to put an end to  my hc intake... only 11 days ago my endocrinologist increased my hc intake from 14 mg  to 18 mg (I was feeling very sick. I am hypothyroid as well.) 

      Some of those 7 endocrinologists have told me to stop taking it immediately and that is impossible to do because if one has Addison's disease, stopping the medication can trigger Addison's crisis. It seems I had one when I was in hospital with my third pneumonia. (I was 78 years old then).

      I do not want to scare you. Perhaps where you live whether is UK or USA you can find a list of endocrinologists specialised in Addison's disease?

      Be good!

      monsie

       

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    • Posted

      Yes, normal, better than normal because we were both (we have been living together since 1992), very sick. We both had a saliva test which showed very low levels of cortisol.

      We have been able to deal with problems and shopping, and you name it!!! 

      The problem is that we have taken a bit too much and for too long.

      The 7 endocrinologists ethics have a lot to be desired or perhaps I expect to much???

      Keep in touch

       

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    • Posted

      Hi

      I have seen 3 endocrinologists all don’t think it’s Addison’s, they suggest to take hc in times of high stress. I don’t feel like this is good because once you start your body needs it all the more. 

      I have taken it on odd occasions and I feel much much worse the days after. It doesn’t help Candida either!! 

      I too look healthy as I eat super well,  but no one knows what you feel like on the inside, it’s tough being so physically exhausted I think it’s putting strain in my heart too as I try and lead a normal life!

      I am in uk by the way x

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    • Posted

      Hi Louise

      If you have seen three endos, I doubt that anyone here can do better! But maybe I can offer some clarification.

      1) Cortisol is a your natural anti-inflamatory steroid. Hydrocortisone is a synthetic cortisol so if [and only if] you have abnormally low natural cortisol it is perfectly ok to take HC to make up the deficit. The problem is just [!] to get the dose right. Until my pituitary adenoma was diagnosed, I really suffered from fatigue. But since I've been on replacement HC, I feel wonderful. But for people with normal adrenal function, it has to be managed very carefully indeed. So it does seem very odd that a doc would suggest it without knowing the underlying issue???

      1a) Taking extra HC "in the event of stress" does NOT mean a bad day at the office! It refers to physiological stress - illness, injury etc.

      2). ACTH is the 'signal hormone" produced by your pituitary to tell your adrenals to make cortisol. If you are not in stress [see 1a] then there is no reason for the level to be more than trickling along.

      2a) A "synacthen test" [synthetic ACTH test] is when you get a jab of synacthen to simulate a stress event. If your Adrenals respond by producing cortisol then you don't have Addison's - but you already knew that.

      3 "Adrenal exhaustion" is a quack disease dreamed up by quacks. But the "placebo response" [see wikipedia] produced by naturopathy, homeopathy and the like can be very real but unfortunately tends not to last.

      If I were you, I'd concentrate on getting the candida resolved because that's debilitating of itself. Problem is that it is an opportunistic infection - it turns up to kick you just when you are already on the floor. So why are you "run down" is the real question, I think,

       

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    • Posted

      Hi 

      Thank you for the very helpful reply. 

      Finding the underlying causes seems to be a problem. I personally think it’s and right side adrenal issue but convincing doctors is another matter. 

      Quite hard to rectify Candida when your adrenals are shot and when you produce so much progesterone. 

      Thank you for your help. 

      Louise 

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    • Posted

      Indeed it is difficult. The problems we encounter is that nothing is a 'clear cut'. In my case doctors do not seem to want o know how to diagnose my Addison's disease or adrenal insufficiency. Therefore treating oneself with T3 (Ct3m) (which seems  a very effective thing to do, is not possible unless ONE KNOWS ONE DOES NOT HAVE Addison's disease).

      Even when a patient like me and Laurie have what's called Stim test, and cortisol is low, does not seem to be enough evidence to diagnose Addison's disease The thyroid, I know it is autoimmune, I have goiter. So, one things : 'well, if my thyroid is 'autoimmune' so must be my adrenals? Million $ assumption!!!!!!! I hope not to confuse you...

      Thanks for your kind reply

       

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