I had a Saliver cortisol test a few weeks ago and the AM one was a little low, I showed the result to my GP who did a serum Cortisol Blood test, I got a phone call the following day telling me it was 140 right at the very bottom of the range so is borderline Addisons,, he said 1 more point down it would be addison's, He retested it again yesterday so waiting for result..
Has anyone else had this, is this normal or should I be worried,,
would like to hear from anyone who knows about Cortisol or has low cortisol and just be interested to know a bit more about it,,
It could be why I have to say in bed many days with Migranes and zero energy..
Dr said it could be that I was left un treated after Sub Thyroidectomy for years then left under medicated for years, Stress, which I am not really under lately or could be Auto immune or maybe pituatary Gland,, which My TSH is stuck at 0.004 so that may explain that..
Any info on this would be much appreciated .. I have got to pop out till bit later so will answer anyone when I come back in Thanks
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Pascha1
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It sounds like you have a decent doctor. I have been taking nutri adrenal extra due to low cortisol for quite a long time now. With me it tends to cause low blood sugar that does not rise on eating. There is a large body of thought that accepts there is something called adrenal fatigue which can cause all the symptoms of chronic fatigue but mainsteam medicine only really accept addisons which is when your adrenal gland is at the point of collapse. It is really good that you have had these tests. It sounds like you doctor is better informed than most so hopfully he will make some helpful suggestions. If he is unable to treat due to you not ticking the blood test box you may want to try some nutri adrenal extra to see if that helps. Cortisol tends to be higher on blood tests than saliva due to the stress of having the blood taken.
I have found the most amazing GP , hes just given me B12 injections even though my B12 was 750 for a trial to see if i feel better,, He's going to prescribe me NDT after Ive finished trial with Endocrinologist well we have to apply for funding on that, but already got the clinical pharmacist on my side, so that was a huge hurdle at the time my GP said she was the hardest one to break ad said I did well to get her on my side,, I did go into one about heath lol and after her trying to fob me off i had all evidence and answers for her,, she even tried to tell me to move my T3 around, I said Look are you a professor , she said no ! I said are you even a Dr she said no, I said well that would mean you know even less than most Drs so I suggest you do not interrupt what my professor is suggesting I do to get well.. that shut her up lol in the end after her trying to scare me was very submissive on the phone,, I got a letter in post next morning saying the GP is willing to prescribe after my 12 week trial , ,, and apparently she has a lot of influence on CCGs answers,, so hopefully can stay on NDT ,, Im only just had my second dose up, but got rid of that rotten Levo just 5 days ago, and I have T3 til next dose up, then discovered this low cortisol.. I was left not treated and hypo for years after sub thyroidectomy then left under medicated and with lots of genetic faults for 14 years,, so I really laid into her when she was trying to tell me about T3 when TSH was suppressed.. but really what right do hey have.. anyway probably because of badly treated thyroid that could of caused all this.. ..
My GP is into genetics and told me after the saliva test to read adrenal fatigue by DR Lam, so hes very clued up on things,, I feel safe with him,, hes a rare Diamond .. but only just found him after 35 years of useless idiots they call them selves GPs.. say no more you probably know that one ...
I would hate to think what my health would be like if i hadn't come on forums although it was a female GP who pointed out my thyroid was my main problem >. so two good GPs at same surgery ...
Sorry to hear you fell out with GP probably because of his ignorance no doubt .
I just phoned surgery My cortisol has gone up but I had a really good day yesterday with energy,,,
My result was 237 But as I said I felt really healthy yesterday
is that much better its not addison's now then ?
surgery just told me The gp not in today, so will he bother ringing me now as gone up that amount ?
I m now normal I suppose ...
get days where I have no energy at all , i just about manage to get up to let dogs out and that seems a major trek do do that and feed them, my head pounds and i just cant move,, is that how you felt and have to stay in bed till next day or has been 4 days in a row...
damned bloody blood tests. Thye are up and down all the time with hormones and yet the medical profession is expected to reply on them. I should wait to see what GP says as least they are on board with adrenal fatigue.
He still wants me to go in when I feel bad, but getting up and out the house when i feel like that isnt easy yes hes very good best GP ive ever met in my life tbh ..
You could either have Addisons or secondary adrenal insufficiency. Addisons is when the adrenal glands don't work whereas secondary could be from another source, usually the pituitary not working i sending ACTH to the adrenal glands to make cortisol. It;s good that your GP is taking you seriously & doing further testing. You probably need to be referred to an Endocrinologist, but one who understands adrenal/pituitary issues as not all of them do. If you call the Pituitary foundation on 0117 370 1320 they will be able to direct you to one in your area. What time was the cortisol blood test done? Cortisol levels are at the highest first thing in the morning so tests should be done between 8-9am. Your result of 140 is on the low side, cortisol should be around 500nmol/Ls first thing in the morning. The Endo should do a Short Synacthen test to see if your adrenal glands are responding, he should also take blood for ACTH as well to see if the problem is with the pituitary gland. Don't take any supplements until you have had further testings as they will mess up any results.
Thank you thats exactly what he said .. the 1st test was at 9am , then after that he said If i felt really dreadful Im to email him early and he would arrange me to go in for bloods, I was ill but to ill to have energy to email him,, the last test he got me in the surgery early at 8am and took the bloods himself, before his surgery started, and told me to come back lunch time for B12 injection see if that helped... He was shocked my Cortisol was so low but said it could be that as would explain why you have no energy and feel bad all the time.. said something about further testing if still that low I couldn't remember what it was i was in sock with the name addison's being mentioned tbh,,, I dont think Ive got that as have not got salty cravings but had no taste buds really , till i had that b12 injection so guess I have a gene fault on that making bloods look ok and PA hiding.. My father had PA so was guessing I have it and after the injection i even more think I had it as was glowing and warm for the 1st time in years,,
I am with a professor Endo at the moment who is prescribing NDT I would think he will know about pituitary more than last endo who was a pituitary specialist, he wasnt interested in how i felt said bloods looked ok and ignored everything i said to him.. my Tsh was always 0.004 and my gp had written to him as she thought i had other endocrine problems, she was so annoyed she said have another opinion,, find one who will give you what you need and i will prescribe it as not allowed to initiate it... ,
I will ask around if I find out if my Endo is good on that,, but he was quite good but never picked up on this .. but maybe as he was trying NDT he may of thought that was the answer to my problems as he said most who have thyroidectomy do better on NDT . I will if i do have to see Endo with this I will call that number you have given me thank you they may know if my current Endo is good with that or not but him being a professor I think he should be
, i haven't heard anything yet from Dr but GP will be busy in surgery today till after 6 sometime ,, so may hear tonight if its all wrong,, I have his email if I need an appointment he will just add me on so not to wait weeks to see him which is really good and that way less stressful for me as I feel he is caring about how i feel and won't be forgotten when i leave
its hard to see him till about 6-8 weeks as soon as his appointment are on line they go in minutes ... but I know why now
What sort of supplements do you mean the vitamins or something else ?
Your GP sounds really good - which is great to hear! By supplements I meant anything to "help" improve the adrenals. If you are on Facebook then join the UK Addisons info & support group as there are some very helpful people on there. I've got secondary adrenal insufficiency from removal of a pituitary tumour so have quite a lot of experience with it.
I won't start anything till i know whats going on, Im a little confused by it all as wasnt expecting this after just random cortisol test,,
i think if i need to do anything if not addison's the GP will help hes just so brilliant I am very lucky to have found him, and Im hanging on to him for dear life lol
Shame i didnt meet him 35 yrs ago i wouldn't of got in this state then, I would of been well
Thank you for help , it helps knowing someone else has it, not that i wish that on you but handy for me as can ask you things if you don't mind if i need to?
It was a bit of a shock when he said all those things on phone the other day and i still am thinking oh they got the bloods mixed up with someone else !
it didn't sink in till a bit later and then I though i dont like the sound of this very much ,
its quite a lot to digest and reading about it sounds dreadful.. but i would probably want to take a more natural remedy as only just got rid of one poison levothyroxine, and Gp was looking into Bio identical HRT for me so i dont want another poison as body not recovered from last one yet :(.. is the one you take pigs or bovine cortisol ? and does it work ? as think will do that way rather that synthetic steroids as would rather avoid those as heard you get fat on them and Im only just hoping NDT will help me lose weight so doesnt sound appealing to me plus they they are just not great to take all the time, my poor dog was on steroids for over a year as she has auto immune and poor little thing was so bloated her face was like a balloon,, so glad when she could come off them ,, so seen what they do to people and i would rather not have that in me so will do all I can to
I'm happy to try & answer questions if I can. I take the synthetic steroids. if you do have adrenal insufficiency then the steroids you take will be replacement for what your body makes so you shouldn't put on too much weight. It is a life threatening condition in that if you don't take your steroids you run the risk of dying as they are essential for life. Another good source of information is the Addisons society.
Hidden I just called The pituartry number , they gave me a list of Endos in my area, and one is my old Endo who wasnt that good, he dismissed all my symptoms so I really have no faith in him so not going to him..I think if someone has let you down you will never trust them,, plus he is against Not which I take so probably blame that.. I thought he was lazy after my second visit with him,, if he had been doing his job properly Ihe could of discovered it was this a year and a half ago as same symptoms.. but they have another who I have heard is very good on anything Endocrine so will ask to see him,, apparently the Endo Im seeing now isnt on list,, seeing GP Tuesday so will tell him I need to see the one they recommended and all info you have given me thank you x
When were vitamin D, folate, ferritin and B12 last tested?
These need to be optimal levels for thyroid hormones to function well
See you mentioned family link to PA
What supplements are you currently taking
How much Levothyroxine and what were last test results of a TSH, FT4 and FT3
Adrenals can become totally exhausted if under medicated for thyroid.
Pascha1, can I ask what your morning cortisol was on the 4 point test? I had a 4 point cortisol check via Medichecks last year. Only the morning was low (5.76 - normal range is 6-21). I put the results into my medical file and never got a call about it so assumed it was nothing to bother about. Medichecks recommended I get retested in a month, but private blood tests add up.
Was the blood test that you had first thing in the morning? Mornings tend to be hard for me - very groggy for a couple of hours after waking, hard to get up. I feel better in the evenings, though.
I feel like that all days most days had a good day yesterday and today but I will pay for them soon no doubt xx yes feeling run over is a good way of explaining it,, the saliva test was also taken on a very good day , x
Not long ago slow dragon, Ferritin was around 50 but full iron was really good, Vit D is 120-130 so thats good, My B12 was 750 but GP gave me a B12 later that day, so will be good now, and Folate i take folate. i was taking high dose B12 but they didnt do to me what that injection gave me the heat inside me, I felt like parts were coming alive a bit, but still got tired quite early, that was given after the cortisol test
I have recently been switched over to NDT as I wasnt feeling well on Levo,, only on second increase, but have 30mcgs T3 as well as NDT, got rid of the Levo about 5 days ago hoorah My TSH is stuck for ages at 0.004 what ever i do it won't come down,, T4 is 9.5 range starts at 9 cant remember what ends at,, which is expected on NDT and T3 is the same at 4.3 top of range being 4.9
I think like you say they are exhausted as i wasnt getting on with T4 and was not treated for hypo for years and after was under treated then have genetic faults so was pretty bad till I had T3 added last year ,, felt a tiny bit better mood wise with NDT but not a huge amount,, The B12 shot did more for me than anything has in a while,, someone said i looked a lot less stressed today, but that could be as i don't have a massive migraine today...
i think the damage has been caused by the levothyroxine in past as felt dreadful since the day I started it in early 2000 , i felt worse after taking that than before i was diagnosed and know I was hypo as my voice was deep and hair dry,, just loads of things I can point to now I know what it is.. I was thin before Levo that turned me fat...
But thank you I think they are all in order as long as all the blood tests are not flawed as im beginning to think some are X
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Thanks 
yes hes very good best GP ive ever met in my life tbh .. 
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