Low T3 and T4 with chronically high Cortisol level ? TSH 2.3 mu/L

After being admitted to hospital last January (2013) I was diagnosed with extremely low vitamin D and told I probably 'just had CFS'. At this point I was either wheelchair or bed bound (sleeping downstairs) as I was so weak I lost the use of my legs. I was told all other blood tests were normal, but my blood pressure had dropped to around 60/40 and glucose levels dropped between 1 and 3 (I have diabetes type 2). Both have remained low to date.

To cut a long story short I was rushed into hospital in October after a District Nurse visited me at home to take bloods - the results were alarming and my husband was told not viable with life :( I suffered acute liver and kidney failure, sepsis, internal bleeding, portal hypertension to name a few. My breathing rate was 2 per minute and blood pressure through the floor. My husband was told I had between 4 and 12 hours to live, that they would 'make me comfortable' and stop medical intervention. I am stubborn and was still here after four days when treatment was restarted. I spent 8 weeks in hospital and ITU. I have no memory of most of this time!

I now have chronic liver failure.

I have just finished a course of 6 B12 loading injections and the nurse kindly offered to print my latest blood test results for my liver. She went back two years.

I noticed my blood test results (January 2013 - whilst in hospital the first time) for T3 was 3.8 pmol/L (3.10-6.80 pmol/L), T4 was 9.5 pmol/L (12-22 pmol/L) and Cortisol 515 nmol/L (no range given) but was noted as chronically high. Underneath the results it said Secondary Hypothyroidism ? Adrenal Fatigue ?

* Added * I have just found my TSH level was 2.3 mu/L in October 2013 whilst in hospital but no T3 or T4 tests were done at the same time and my TSH was 1.2 mu/L in April 2011.

I am having worsening symptoms of extreme fatigue, muscle and nerve pain, tingles like pins and needles but more painful, headaches, tremors, feeling constantly cold, hair loss, fuzzy headed and forgetful, fat moon face, periods stopped over two years ago with no signs of early menopause and barely able to move. My GP has referred me to an endo to finally get some answers.

I am unsure if my worsening symptoms are the result of being in ITU or also connected to the above results?

Sorry for the long post but any advice as to whether I also have a thyroid problem (and what type) would be very much appreciated.

Many Thanks,

Mel x

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9 Replies

  • Your story is very frightening. It seems logical to me that judging by the thyroid blood tests, you do have a thyroid problem. But those tests were a year ago. Have you seriously not been started on any medication? If I were you. I would definitely not wait for an endo appointment but return immediately to my GP, or preferably a different one, who knows something about thyroid, and ask for new thyroid and adrenal tests. If your adrenals are very low, I think it will be difficult to take thyroid medication. This is where your GP should arrange for you to see an endo as a matter of urgency. I am still reeling from your story and wondering if I have read it correctly. If I have, then I wish you speedy help and a good recovery.

  • Hennerton,

    I hope you are well and thank you for replying.

    I am sorry if I have scared anyone with my post :(

    I was originally hospitalised (Jan 2013) after losing the use of my legs and blacking out. Another odd symptom was and has been a very sore tongue and multiple mouth ulcers. I have also wondered if thyroid medication has any effect on the liver.

    Sadly, the doctor (in hospital) told me all blood test results were fine, except Vitamin D. I was on a/d's due to the misery of feeling so ill and he seemed to jump on this by saying he would refer me to the psychiatric dept! When I was discharged over a week later I was told there is no psychiatric dept at the hospital. I came home feeling very ill and traumatised and vowed never to go back to the same hospital!

    I must say the treatment I received in the second hospital I was in for 8 weeks, was superb. They not only cared for me, but were excellent with my husband and three children. I could never thank them enough. When I was in ITU I had doctors / nurses with me round the clock.

    My GP phoned me at home on Tuesday to say he was doing an immediate referral but I am concerned how the T3, T4 and cortisol levels have been ignored for over a year and what harm this may have done. On my blood result sheets the results were even highlighted as abnormal, with the comments I mentioned earlier underneath them.

    My GP only works one day a week and many locums come and go, so there has been no real consistency. He has been my GP for years and did reduce his work days about 18 months ago. I am hoping to see him again this coming Tuesday as I feel I am taking another downturn, maybe he can 'hurry up' the referral appointment. I have not got the energy plus my arms are so painful I cannot self propel my wheelchair which is making life more difficult. I cannot take pain killers due to the liver problem but am using magnesium oil massaged into the most painful areas. I have low magnesium levels too and this is a good way for the body to absorb it - hopefully killing two birds with one stone ;)

    I am sorry for rambling on - my head and memory is all over the place at the moment!

    Thank you for your advice.

    All the best,

    Mel x

  • Mel,

    I'm shocked, reading your story. It seems nobody is overseeing your health.

    Write to your GP with your concerns about T3, T4 and high cortisol being untreated for over a year and tell him you're sinking again. Request new tests and request an urgent endo referral.

    Good luck.

  • Thank you Clutter,

    I will phone my surgery on Monday to request blood tests be done now, rather than waiting for the endo appointment to come through and having them done at a later date. I will also ask if the referral can be sped up and if I still feel this awful I will contact Doctors On Call during the weekend.

    I hope no long term 'damage' has or can occur due to no diagnosis or treatment?!

    Take Care,

    Mel x

  • Your post is quite shocking actually, the thyroid is responsible for all bodily functions heart, liver, gut, cognition. B12 low vitamin d in the mix , not to mention high cortisol,which could be cushings especially with round face. Your right you need to be seen asap for a evaluation. I'm sorry to hear you have been left with multiple symptons. This is a route for you to get well. Let us no how you get on. X

  • Hi Merissa,

    Thank you for your reply.

    I have thought I may have Cushings as my cortisol levels are chronically high. The last blood result I have (from Jan 2013) show the level at 515 nmol/L but does not indicate a range?

    I am speaking to my GP on Tuesday to push my referral through quicker as I am in increasing pain, barely able to move and just want to sleep!

    Take Care,

    Mel x

  • Good luck hun, I too have high cortisol and not one medical specialist have taking this on board, because it was private salava test as urine cortisol is useless and does not show variations all day. Xx

  • Thanks Merissa,

    I will post the outcome as soon as I have one!

    All the best,

    Mel x

  • Really feel for you Mel. If there us one thing I am learning is that you need to be on the ball and push for tests and diagnosis. Good luck with your GP and Endo. Thyroid treatment could give you a huge improvement in health and wellbeing x

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