Low morning cortisol/High night time cortisol - Adrenal Insufficiency and hypothyroidism.
Posted , 5 users are following.
Hi, my energy is particularly low at the moment but once I start going into things I usually can't stop, so I'm going to deliberately keep this short and sweet.
I have researched thoroughly and believe the reason I have felt so much more ill since taking levothyroxine is because I also have secondary/tertiary AI and even the warnings in the patient leaflets for levothyroxine say that adrenal issues may need to be addressed before starting on thyroxine.
I have been fighting to try and get the NHS to listen to me for 2 years, it's been a complete nightmare and i am just about at the stage of giving up altogether and going for self treatment.
I have no quality of life, in bed most of the time and cannot do anything any more.
My ACTH and cortisol levels have been low and getting lower since I first saw the first endo, in February last year.
I had an insulin tolerance test that showed an 8 am starting cortisol level of 43nmol (1.56 ug/dl), and did not increase at all in response to induced hypoglycaemia; in fact in went down to 26 nmol (0.94 ug/dl), hopefully that will mean something to someone. From my research and with my other blood results through the year it supports secondary/tertiary AI.
I was in hospital for a week and a cortisol\ACTH test taken at midnight, that was supposed to have been done at 8am (it's been a hell of a struggle to get the results and as yet I still only have a few) showed the highest cortisol/ACTH I have ever had at 453nmol (16.42ug/dl), which is a perfectly healthy result for an 8 am reading, but quite alarming for a midnight reading. In my report this was listed as an 8am reading, which I obviously found highly unlikely as I felt no different to 3 days before, when my morning reading was 63nmol (2.28 ug/dl) and my ACTH was undetectable at <5. When I found out it had been taken at midnight, they had to wake me up to take it, I realised I had to look into it.
I have found absolutely nothing in all the medical sites I have searched that references low cortisol in am rising throughout the day. When I look back on my results, all my highest cortisol levels, although still way under the reference range have been later on in the morning or around midday.
I'm desperately trying to find a reason for this so I can bring it up with my last chance endocrinologist.
That's my version of short and sweet, my apologies. I would be so grateful if anyone can point me in the right direction or has any knowledge of these strange results. Thank you in advance. 
1 like, 27 replies
tismesue
Posted
I can't see how to edit my post but just wanted to add the reference ranges.
ACTH 9 - 52
Cortisol 275 - 690 (9.97 - 25) So you can see with that reference range my results are very low.
kenzii92818 tismesue
Posted
Hi
I had Adrenal issues however at the time I didn't know it...I ust felt like you wide awake and busy at night and very lethargic in the morning ..then they gave me levothyroxine as my thyroid low been telling the doctors for ages something wasn't right and they just told me I was depressed time and time again. ...but your right about having medication for thyroid that's what sent me reeling into an adrenal crisis ...I have to take steroids for life. Keep a close eye if you start losing a lot of weight.. and lose appetite and lethargic all day rather than just the morning...your levels of cortisol are back to front...so you could have chronic fatigue syndrome which is what I had at the beginning...is the sunlight really bothersome to your eyes during early day..mine did as the low cortisol makes you pupils dilate rather than constrit. ..
tismesue kenzii92818
Posted
Hi Kenzii, sorry it's taken so long to get back to you. Even though I can be wide awake some nights, I still have no energy. For example the cortisol level 453 at midnight, they had to wake me up for. I sometimes sleep for 3 days and I can be awake for 3 days, but the lack of energy is constant.
I did lose weight, I lost 11kilos in less than a year, so not extreme but constant. I barely had the energy to eat and felt sick most of the time. For a few years, I had been unable to hang out washing, before it was due to energy, because my eyes are so sensitive to the light. I have seen a lot of research that suggests hypothalamic dysfunction in ME/CFS
How are you now on steroids? Has it made a big difference to your life?
I will update my main post, so I don't have to keep repeating it, but I finally got my endo to prescribe 10mg hydrocortisone in the mornings.
Thank you for your answer.
kenzii92818 tismesue
Posted
Im ok now take between 12 mg and 15 mg hydro daily..I had full adrenal crisis and admitted couple months back in April this year after having Addisons for 8 years before my first diagnosis i went from 9 stone in weight to 6 stone they thought i was anorexic in the hospital..
they don't know why crisis happens when on medication and think my stress levels played a part in the latest episode ..at least you got medication now ..
tismesue kenzii92818
Posted
I was worried that !0 mg might not me enough, but it's good to hear that even with Addison's you are ok on a low dose. I hope that continues.
I believe the main problem with this treatment is for years they have been giving people way too high doses and caused so many problems that now they tend to shy away from it completely unless, as in your case, they absolutely have to prescribe it. Anything below full blown Addison's and they don't want to touch it.
cool_catalan tismesue
Posted
Very interesting. I live in Australia and I have the same problems with Medicare. Yes, you are right, your ACTH test should have been done at 8 am. (I have had it twice and I complain I had the first blood taken after 9 am...) I cannot get to the bottom whether I have Addison's disease or not... I had an insulin test sometime ago. I do not understand it at all. The endo (3 endocrinologists ago!) said that the results were ok.
I am treating myself for hypothyroidism which is a very complicated task... believe me. I can have some tests online paying privately. I guess you can do the same in UK. But with the adrenal insufficiency and or Addison's disease, I am more lost than with the hypothyroidism business. My partner who is from London by the way, is also treating himself for the same problems. (It is a good job we both suffer from the same...)
Going back to your insulin, I have good information I will send you privately soon from a book I am reading and hoping to find a solution to stabilize my hypothyroidism. The problem though is that I have a pituitary microadenoma and the neurosurgeon and the present endo do not 'explain anything to me'. Does it sound familiar? I have seen 8 endocrinologists since June 2015 when it seems I had an Addison's crisis or was it not? ha ha ha.
My partner who is very underweight and pale and had TB as a young boy, was tested for Cushing's disease just to be told not to worry you do not have Cushing's disease. His TB and my microadenoma are of no consequence.
Yes, T4-T3 is bad. We take T3 only since Mid March (too soon to have good results as we are trying dosages). We take 20 mg/day of hydrocortisone to help the adrenal glands. We took more sometime ago because we were not feeling well, but we have decided that the physiological dose of 20 mg/day is the maximum.
I love your comment. I am all over the place, sorry.
(I have macular degeneration, that explains the sun glasses).
monsie
tismesue cool_catalan
Posted
I am so sorry to hear of your problems and that of your boyfriend. It seems like this is an international problem.
As far as the endos are concerned there is Addison's and there is Cushing's and even though they are fully aware neither condition happens overnight and can take years to develop, anything in between is dismissed.
It's absolutely bonkers, and yes unfortunately it's very familiar. I'm on my 3rd endo, who I saw the other day. Along with the others he has never answered my questions about the thyroid medication making me worse and wouldn't it be worth trying to address the adrenal issue first. And I was repeatedly refused hydrocortisone treatment and told of the horrendous side effects, but whenever I would ask them to look into recent research that says lower doses are far less dangerous, especially for people who are deficient (ie, only replacing what's not there) they all ignored me, looked at me with blank faces. One of them did actually once reply and asked what I thought was a 'low dose', I said around 20mg, the same as you. He laughed at me and said, "Well if I was going to prescribe it at all, it would be 1-2 mg a day." Which I think was pure sarcasm, or pure stupidity, hard to determine which sometimes.
Please check my updated post; what happened after my appointment a few days ago.
I wanted to ask though, how is the 20mg working for you? Is it making any difference?
And incidentally I bought my own NDT from Thailand, I need to check if I can still get it. I don't know if it's definitely better in my case yet, but I had to try.
Thank you so much for your answer
courtnay26 tismesue
Posted
Is indicative of Cushings
There is a chance you have a pituitary tumor
I would get a pituitary mri
As soon as possible
And try to avoid dynamic testing
It can cause an adrenal crisis
If you have a pituitary tumor
cool_catalan courtnay26
Posted
tismesue courtnay26
Posted
I had a pituitary MRI while in hospital, apparently normal.
However I seemed to be the only person who knows my cortisol was high at night because it was listed as a morning cortisol.
So unfortunately pituitary seems to be ruled out anyway. I was really hoping it was a tumour that could be removed and fix everything.
Because I didn't want to get too involved with my first post I couldn't put all the info in. My research, ruling out pituitary involvement, of my ITT results were that it pointed to hypothalamic dysfunction. Tertiary AI.
I don't think Cushing's is consistent with such low morning levels and I don't have many of the other symptoms.
Thank you for your answer though, I appreciate it.
courtnay26 tismesue
Posted
I know it may not be related but I thought I had Cushing's tested for it , negative but
I had and have symptoms that still indicate I may have Cushing's
tismesue
Posted
Here's an update to my original post.
I went to my endo appointment the other day and he did an almost 360 degree turn.
I discovered there were numerous mistakes in the test results I had got from hospital and have been working on getting the full results for all the tests. In the month before, I had cancelled an appointment to give us both more time, and I specifically asked him to check the results that seemed as though a miracle had been performed; I was suddenly showing a perfectly healthy morning cortisol result after a year of getting lower. There were many others but I wanted to wait until I got full details.
He hadn't done that. I told him I had the times and it was taken at midnight."Oh yes, you're right" he said after looking it up.
He knew there were many other inconsistencies, but changed the subject and asked me what I felt I wanted to happen.
I told him I would like a trial of hydrocortisone to see if it could help level out my hormones and help my hypothyroidism. As I had said so many, many times before and had practically given up on.
"Ok, let's do that then". WTF!!!
I should say this is the first time I bought someone with me to my appointment - very important! I didn't feel spoken down to for the very first time.
I should also mention that I sent about 3-4 emails in the week beforehand explaining everything I knew and had researched about my condition. A word of advice, don't mention patient forums too much (they don't like that), I told him about the research I had done on sites like UpToDate, a very reputable source of medical information, well worth looking into, even just so you can let them know you're serious.
The downside is he decided he was trialling me on 10mg hydrocortisone for 6 weeks, down to 5mg for the next 6 weeks, then stop. I'm not sure this is going to be enough considering how low my cortisol usually is.
I'll give it a go but will probably still have to end up self medicating.
Initially I was on a high, I'd won the battle! Then, to be honest, once I thought about it a little more, I felt really angry. I felt he was just trying to keep me sweet because of the hospital results and because I had someone with me, but really wasn't actually trying to help properly. He said he'd see me again in 4 months. That's a month after I finish taking the 5mg a day.
Surely if he was actually trying to find out what was going on, he would want to test me after the 6 weeks of 10mg, then after 6 weeks of 5 mg.
I wanted to have some kind of a breakthrough so I might be able to pass it on to all the other people suffering with thyroid and hormonal issues and getting no proper help. I felt that was all part of the fight. So my 'victory' feels so very hollow.
I would have liked a specialist to tell me what I needed; I'm so sick of giving the NHS endos the last 18 months of my life, while I didn't even take supplements so as not to muddy the waters with their tests, only to have them ask me what they should do.
I really hope one day all of us that have had our lives affected so badly by ME/CFS and any thyroid, adrenal or other hormonal issues will find the health systems start to care and learn how to treat us. Until then most of us have to do it ourselves and learn from each other.
I'm sorry I probably rambled a lot and I'm still reeling a little from the amazing feeling of victory crashing down once I gave it a little thought.
courtnay26 tismesue
Posted
You mentioned hypothyroidism
I would make sure what kind of hypothyroidism it is
There is
Primary hypothyroidism
Secondary Hypothyroidism
And central hypothyroidism
courtnay26 tismesue
Posted
You would think they would be doing
Some sort of surgery
Anyways , I hope you get better
tismesue courtnay26
Posted
They can't tell me Courtnay. Believe me I've asked. I'd like to know if it's Hashimoto's also, they said they don't know because I wasn't tested for TPO antibodies when first diagnosed with a TSH of 39.
I stopped taking any thyroid medication for about 2 months so they could test me properly. During that time I got back some of my energy and my creativity which was amazing but my pain which I've suffered with for years became much more severe again. Mainly severe morning pain which I believe is usually caused by inflammation.
So I was told to go back on my meds to prepare for the Insulin Tolerance Test and I requested full thyroid tests be carried out by my endocrinologist before I started to see if I had Hashimoto's.
He just did the usual TSH, T4 and T3 so that was pointless.
I asked if I could have secondary hypothyroidism, the answer - "No, it doesn't work like that". When I asked what he meant by that I got the usual change of subject and realised I wasn't getting an answer.
I have so, so many unanswered questions with them it's unreal.
They could only operate if it was a tumour, apparently my MRI says no tumour. Apart from that the only other way that I know of to treat is with replacement hormones which is what I've been fighting for, but I don't think what I've finally been prescribed is enough.
I think I've almost decided I'll give this 10mg dose of hydrocortisone 3-4 weeks (many people feel results within days if it's going to work), and if no change I'm going it alone. I just have no idea where to source hydrocortisone from without a script and can't find any information as yet. Thank you for your replies.
courtnay26 tismesue
Posted
Hi
It is their responsability to provide you
With adequate health care so
Hopefully you can get your anti tpo's check
If your
Ft4 is low or low normal
And you have no antibodies - anti tpo
It is a hypothalamic/ pituitary axis dysfunction
Which it does sound like
courtnay26 tismesue
Posted
And perhaps a second opinion