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Low morning cortisol/High night time cortisol - Adrenal Insufficiency and hypothyroidism.

Posted , 5 users are following.

tismesue
tismesue

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. smile

1 like, 27 replies

27 Replies

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  • cool_catalan
    cool_catalan tismesue

    Posted

    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...

    • tismesue
      tismesue cool_catalan

      Posted

      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? smile

    • cool_catalan
      cool_catalan tismesue

      Posted

      Your  ACTH results showed low cortisol, then you  have AI or Addison's,.  Did you have the Stim ACTH test? That is the one I had, but there is another ACTH test that lasts longer I think 24 hours  The Insulin Tolerance Test, I checked in my book as promised. It only gives the advice to have it, no ranges or anything else. Next time I see the endocrinologist in June I'll ask for it. Before that I'll ask to the Pituitary Foundation. Look I am taking T3 I buy in US. I use a book for guidance as taking T3 is complicated. I tried to stop thyroid medication for 6 weeks at least and then have a test of my thyroid. My partner did that. After three weeks I was too sick without medication, that I had to start taking thyroid  replacement therapy (I was taking then NDT which I had to stop and go to T3). I was on HC, so I was feeling cold, tired and weak and everything else because of hypothyroidism. I am feeling better with

      T3, but when a person has been hypothyroid for a longtime and under treated or not treated at all it takes some time to find what the right amount is. With T3 one can have side effects. I only started in mid March. I think I am close to the right dose now. I would take the HC as your latest endo told,  focusing on your adrenal problem. Then you will know whatever you feel that is due to HC. If you take the thyroid replacement therapy at the same time, then you will not know if the symptoms of lack of them are due to the HC or the thyroid medication....

      This is what I would do. I started taking both at the same time. I was feeling better, not well enough. The symptoms of hypothyroidism are still with me after three years. With the T3 I feel less cold, and less tired, and stronger, but I am not 100%.

  • Msue5
    Msue5 tismesue

    Posted

    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. 
    • tismesue
      tismesue Msue5

      Posted

      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. 

       

  • pamela_21
    pamela_21 tismesue

    Posted

    hi there my cortisols low and need acth test am worried about side effects of test x
    • kenzii92818
      kenzii92818 pamela_21

      Posted

      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..

    • tismesue
      tismesue pamela_21

      Posted

      I had no symptoms at all from the synacthen test Pamela. So please don't worry about it.

      It doesn't necessarily tell you if you have secondary or tertiary AI though. If you get a 'normal' result, meaning you do not test positive for Addison's, it could mean you have non primary AI.

      You may have a fight on your hands to get checked for that. But you should ask for pituitary MRI and Insulin Tolerance Test. 

      The ITT can have side effects especially if you are normal, which can immediately be reversed. Sweating, feeling faint etc, because you are put into a hypoglycaemic state. You're lying down and as soon as you get the symptoms they reverse it, so it's nothing to worry about, it's a normal hormonal response against the hypoglycaemia.

      I had no symptoms whatsoever because my body did not produce any cortisol, in fact my cortisol went even lower than it started with. Good luck smile

    • cool_catalan
      cool_catalan tismesue

      Posted

       People older than 60 cannot have the the ITT I found out in the Australian Pituitary Foundation page...
  • pamela_21
    pamela_21 tismesue

    Posted

    thank you for your reply i only have 1 adrenal and heart issue and allergy so about worried not having 1 before ty x
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