Addisons Disease and Cortisol levels in tests

[cositjustisok]

Hi ..I have been having tests done for a number of things in the last few weeks, one of these test has come back that I do need further investigations and have to go for more tests to check for addisons disease because my cortisol level checked 3 weeks ago has come back as lower than normal....this I do know is an autoimmune disease and as I already have coeliac disease which is another autoimmune and I think linked to Addisons. I have no idea what cortisol is never mind if i have this disease then how will it affect my life?..I am so scared and have no idea what my future holds...cant google as afraid of what I will read. Would appreciate if anyone could give me some idea of what is a normal reading for cortisol that was taken at 5.30pm (apparantly time it is taken is important)and what warrants further investigation. Many thanks in advance, hopefully somebody cant alleviate my fears. thankyou

Just wanted you to know that I'd read this and sending hopeful thoughts. Maybe someone will be along who can give you some more answers. Addisons disease is autoimmune and is in a cluster of autoimmune diseases with hyperthyroidism, diabetes and coeliac. Just because you've got one doesn't mean you'll have them all though.

My husband has coeliac, my son has type 1 diabetes, my MIL has hyperthyroidism.

Fingers crossed for you.

Hi Bramblebrooks thankyou for your post, I have Thyroid antibodies and a reading for TSH of 3.2 so not sure if anything needs treated there also ...I have osteoprosis too..not sure if any connection though but think there jsut must be..thankyou for your kind thoughts.

There is not really an accepted"normal" level for cortisol taken at 5.30. The standard is to take level in the morning as levels peak then. What was your level? I think (and I'm on mat leave so I can't be 100% sure as my memory is rubbish at the moment) that over 500 is normal in morning. The more important thing is the response to a stimulus. You usually do something called a synacthen test where you are given a synthetic stimulating drug and your cortisol levels checked 30 mins later. Hope this helps.

yes, they are all linked to gluten, are you 100% gluten-free?
Plenty of in-depth advice on gf forum, but it's a long road to get better and diet is an absolute must (treating symptoms could lead to new autoimmune conditions).

Hi Cos (love the name!)

Very interested to read your post. First off, I know it's easy to say but please try not to panic until you have some more info.

I was also told a few weeks ago that my cortisol and prolactin levels were quite low. Am waiting on a referral to an endocrinolgist.

I am diagnosed hypothyroid (not autoimmune)but was getting symptoms of low thyroid
even though TSH stayed low. Now I think that the suspicion is that the pituitary (which produces these hormones & TSH) isn't functioning properly. (I wasn't as strong as you and went Googling )

Hope you don't mind me joining your thread. I'll keep my fingers crossed for a simple explanation for you.

BTW You will be told that normal range of TSH is around 1-5 (though some now say 1-3)so I doubt they will treat anything there. Might be worth asking why they think you have the antibodies though and keeping an eye out for thryroid-type symptoms though.

Thankyou everyone for your replies..had to dissappear last night as DD2 is poorly and hubby was out for the evening.

Fleximum My reading was 191, and I am having the synacthen test done in a few weeks time (waiting on an appointment)
Nightcat I was diagnosed as having Coeliac disease when I was 3 years old (41 now..yikeees) and have been gluten free for most of that time...give or take a few bad years at university and too much beer to drink and pizzas. However nowadays I always stick to my diet..too much pain if I dont and just not worth it. I could understand a lot of my symptoms if I was not adhering to my diet but gluten free is just part of me now Its a way of life and I dont break it at all. Are you Coeliac or a family member coeliac? thing is as I am getting older I am collecting other illnesses that are all related to Coeliac disease and i just wonder when it will stop as I am sticking to my diet.
Barbarawoodlouse..no probs about joining the thread ..the more the merrier and we may be able to help each other, so all good. I did ask my docotor why he thought I had antibodies but he had no answers jsut said some people have them but they never amount to anything.... Thing is i think I do have thyroid symptoms but doc says my TSH is fine so does not need treated. What was your cortisol reading and did you have the reading early in the morning?
thanks once again everyone

Hi my DD has cortisol defiency so is steroid dependant. As I understand it, Addisons is treated in a similar way to DD's condition. The steroids for my DD don't cause side effects as they are replacing what she does not make. And we just need to have her checked regularly to ensure her levels are ok and keep up with medicine, upping her doses to help her cope in times of physical stress. You may also be given an emergency pack to carry with you if it is the case. Hope it all works out ok for you.

Thankyou used2bthin, that makes sense about replacing what is not made. Does the steroids make you put on weight do you know. Jsut when my dad was ill he was given steriods and he put on about 2 stone in 2 weeks would rather not have that side affect got enough there already Hope your DD is doing well.

No they don't for DD's condition , well they can later on but she will be carefully monitered and if she is gaining weight too fast it would mean her dose is too high so they would adjust it. They try to match the dose to what you need. We do profile tests every month or so, basically blood samples taken three times a day for three days and these are analysed and the consultant can work out exactly what time of day she needs more or less of her cortisone. Of course it may not be exactly the same for Addisons disease but as I understand it, Addisons is a disease because the adrenal glands produce gradually less cortisol whereas DD's adrenal glands just do not work to start with, she was born that way, therefore it is a condition rather than disease but similar affects, does that make sense?

three times a day for two days not three I mean.

An evening cortisol of 191 is almost certainly completely normal. I would be much more concerned if it were less than 100. Agree with used2bthin about steroids. With your TSH, I think your doctor is probably right. The problem with thyroid disease is that a lot of the symptoms are very non-specific so loads of different things could cause them. If your TSH is in the normal range it is unlikely you are deficient in thyroxine as this would stimulate increased production of thyroxine. If you have antibodies it would make sense to keep an eye on your thyroid. If you've been referred to a specialist about all this I'm sure they will be able to tell you the best course of action about the thyroid.

Thankyou Used2bethin and Fleximum your posts have helped me understand so much more, I really appreciate you taking the time to help me. will let you know what the outcome is. Does it matter that the consultant I am seeing is not an endocrinologist but rather a rheumatologist...should I mention to him about the thyroid antibodies and TSH..cause it was my coeliac consultant and GP that did those tests. Many thanks again for everyones help

I'm not sure but would've thought that if it was an endocrinologist you'd want for Addisons , is it because they are testing for other things too? I suppose they may test and, if they found it necessary send you to endocrine?

Yes they decided to do this test for addisons along with other ones, and this one came back as needing more tests. So maybe I will be refered to endocrine then..many thanks again

Best of luck, letus know how you get on

Will do and thanks everyone not so worried now.

Hi cosit

I have only just seen your thread as I haven't been on much in the last few days. I'm glad to see that you're now feeling a bit less worried about this. I have no experience of Addisons disease or cortisol levels so can't be of much practical help other than to be around to chat to and send supportive vibes to you.

Love winetimexx

There is a Addison disease support group on Yahoo somewhere I think. We joined because at 3 weeks we were told ds2 had it. They answered all my queries in a very friendly manner and didn't make me feel stupid since i had never heard of it before. It turned out he didn't but it was a panic.

Good luck