Low cortisol

Hormones
1

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

2

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

3

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

 

4

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. 

5

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. 

6

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

Thanks. 

7

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 

 

8

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

 

9

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

 

10

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

11

I have been studying lots of pages from reputable sources. I am very choosy who I get information from as there is a lot of google misinformation ...! I have never know about taking hc in times of extra stress only. People with Addison's HAVE to double the amount of hc they normally take in several instances like having surgery or tests like colonoscopies, dentist visit with some drilling and that, flu, colds (I got a list in the winter handbag. But I never read of having 'some hc' just like that. Have you been tested for ACTH levels?

I have a pituitary adenoma, a microadenoma, but even with this,  the comments of the endocrinologist and the neurosurgeon have been 'inconclusive'. It just goes on. No commitment so to speak.

My partner is from London; we lived there in the early 90's. Then, moved to Spain, and in 2006 we came to Australia.  I had a brain tumor, I was  an Australian citizen since 1984. To have brain surgery in Spain was difficult for my partner as he did not speak much Spanish... I do not have a family, so we came here  for me to have surgery and we stayed. 

Sorry for the length.... but at certain age, unless one has been healthy and lived in the same place for years,  lots of  things have happened, sorry.

One thing I find a bit strange is that you said that contraceptive pills helped you? Are you sure your right adrenal is the problem?  Thyroid gland and adrenals are connected but I cannot think why contraceptive pills could help your adrenals... who told you that?

monsie :-)

 

12

Hi sorry to hear you have had many years of struggling. It’s so hard. 

Estrogen is a steroid so the pill gives you a small boost. I was never great but did feel better. I keep looking at all hormones but it’s a mine field. 

What websites do you choose? 

Thanks for helping   

13

hi Louise

there are two types of adrenal insufficiency

primary- Addison's

secondary- pituitary and hypothalamus

14

Also the medical litterature states that

if you have high ACTH- most likely Addison's

low and normal ACTH-most likely

secondary adrenal insufficiency

15

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? 

16

Thank you for your kind words. I just wish I could change things for people in need could get the help we deserve.

I look at PubMed nlm.nih.gov, wikipedia, Thyroid UK, Mary Shomon (thyroid), , STTM (thyroid),  Joseph Mercola, drugs.com.

The first two are sometimes very technical a too 'FDA' sided. Wikipedia is rather good, some times a bit too 'FDA'. The following three give you info on adrenal glands as well as hypothyroidism. Holistic information pages are rather down to earth. Perhaps some other pages I cannot remember until I see them displayed when I google something. 

I avoid WebMd and MedicineNet I think they are called and mostly 'US stuff'. But it is difficult because google info is dominated by US. 

I have been trying to get rid of Google Chrome but I do not know how to do it...!!!!  and so far I cannot get help from anybody.

Mercola explains in one of his reports the downside of Google Chrome or any Google for the matter I suppose

monsie :-)

 

17

Thank you, I will let you know what the endocrinologists suggests next. 

18

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

19

It is quite confusing to follow, I nearly replied to myself yesterday!! Thanks for all you help. 

20

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