Cortisol baixo pela manhã/Cortisol alto à noite - Insuficiência adrenal e hipotireoidismo

Hormônios
1

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.

2

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.

3

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. ..

4

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

5

A high cortisol reading at night

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

6

I have a pituitary tumor and I do not have high cortisol at night...

7

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.

 

8

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.

9

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

 

10

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.

11

I didnt read the whole post but

You mentioned hypothyroidism

I would make sure what kind of hypothyroidism it is

There is

Primary hypothyroidism

Secondary Hypothyroidism

And central hypothyroidism

12

Courtney answered to your latest comment.

It is true that hypothyroidism can be primary, secondary or tertiary.

At present, I modestly think you have to clarify if your low cortisol is only due to adrenal insufficiency (bad enough) or due to Addison's disease (very bad for the sufferers, specially that doctors do not seem to go to the bottom of it). In theory hypothyroidism has different origins, yes, but at the end of the day, can be treated with thyroid hormone supplementation ndt  seems to help some of the patients, T4 does not help much as many people do not convert T4 to T3. Some other patients decide finally to medicate themselves with T3. I believe it is complicated, but if NDT (do not use Armour please) does not help, then T3 is the last resort. If your adrenals are not supported, any treatment for the thyroid gland will have no beneficial effect anyway. And to treat the adrenals properly, it is important to be diagnosed whether one has AI or Addison's disease. Once that has been ascertained, avoiding at all costs to have Addison's crisis, then  the patient can focus/work on the thyroid. You do not have a pituitary tumor. I have one and on top of not having been diagnosed properly for my adrenal glands cortisol insufficiency, they look the other way when I ask questions about the pituitary tumor. Next week, I'll have yet another MRI for that.

Sorry for the length, but I am only sharing my  own  experience with you and other

sufferers...

13

I was put on Synthroid for hypothyroidism which was caused by Immunotherapy for Stage 4 metastatic Melanoma. The Endo I was seeing had ordered a random Cortisol level instead of doing the ACTH Stim test. Before starting Synthroid your Adrenal function must be checked. After a few doses I felt like I was dying and I was. The Synthroid was causing mini Adrenal Crisis. I ended up in ICU with Adrenal Crisis and Sepsis. Prior to Adrenal Crisis my weight had gone from 108 lbs down to 89 lbs and no one could find a reason. After starting Hydrocortisone I gained 10 lbs in 2 weeks. I had struggled for 18 mos trying to gain weight and I was on Steroids most of that time for other reasons and still was losing weight. I look back and consider this the worst time in my 8 yr struggle with Melanoma. If you are still on Synthroid I would stop taking it and inform your Endo. The Drs said another 24 hrs and I would have died. Sorry I can’t answer the questions about Cortisol levels. I am still struggling with correct doses of Hydrocortisone since 2016. 

14

Since it is probably hypothalamic

You would think they would be doing

Some sort of surgery

Anyways , I hope you get better

15

hi there my cortisols low and need acth test am worried about side effects of test x

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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 ..

17

Hi pam

I wouldn't worry about the test as it is needed to see of you produce cortisol when needed like when your ill etc your body tends to produce more when your body is in stress if you don't then hydrocortisone is needed daily..

18

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.

19

I really hope you get more help with your pituitary tumour.

I had 2 synacthen tests that rule out Addison's; have no idea why it was repeated there was no logical reason.

The gold standard test for secondary/tertiary is the Insulin Tolerance Test by the way, just in case you didn't know. If you haven't already done so please contact The Pituitary Foundation, they may be able to help advise you.

I asked for months and months for that test and it wasn't until I got a second opinion that they organised it for me. That was what showed hypothalamic dysfunction which they have finally agreed to officially diagnose me with. I can't even get a diagnosis of Tertiary AI (because they don't know the exact cause of my hypothalamic dysfunction, apparently) even though my morning ACTH and cortisol levels have been so low for the last year. My bloods from over the last year all correspond with every medical site that show's the criteria for secondary/tertiary Ai diagnosis. And as I explained to my friend in very simplistic terms; if you have a swollen knee but you don't know the cause, it doesn't mean you don't have a swollen knee!

I have been through all the thyroid self trials and even got prescribed T3 alone at one point; I just continued to get worse. I researched so much about hypothyroidism before I found out I had low cortisol.

Now I'm not sure what to do. 

Whether to come off my thyroid medication completely while I take the hydrocortisone, or to carry on taking it with the hydrocortisone. I don't know if you know the answer to that?

20

I'm so sorry to hear that Msue5. 

I have never heard once of people having their cortisol levels checked before being put on thyroid medication.

I have informed them over and over. I took in patient information leaflets from the thyroxine boxes which warned that you should not take this medicine if you have unresolved adrenal/pituitary issues. I was told it only applied to Addison's disease. I told him this was clearly not the case as Addison's is not a pituitary disorder, it is an adrenal disorder. When I explained I believed this might be the reason I had become so ill on thyroxine, which is the very reason I had asked for a referral to an endo in the first place, he said he did not believe that the thyroxine had made me worse. I asked him to repeat that he did not believe me that the thyroxine made me worse. He did.

Like I say this whole journey has been a complete nightmare and caused so much emotional pain when you don't have the reserves to deal with it anyway. I know I'm not alone, and the worst part is when you try and explain to people that don't realise what's going on they assume the professionals know more than you, and start to treat you like a hypochondriac. It's been so hard.