Potential low cortisol - when is it dangerous? - Thyroid UK

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Potential low cortisol - when is it dangerous?

liaratsoni profile image
7 Replies

Hi everyone,

I have posted before about symptoms that potentially relate to a cortisol problem. I also know that as a secondary hypo patient I am more likely to have other pituitary deficits but I had a blood cortisol test in october last year before treatment and while I wasn't given ranges endo said it was fine so I assume therefore I don't have addisons. I have netherthless been having real problems with awful symptoms the last few months and even more so when I try to raise T3 despite being no where near top of range in either t3 or t4. I have tried increases of 5mcg, 2.5mcg but just cannot handle it. This morning I ordered a saliva cortisol test but I am concerned.

I ordered the cortisol test this morning after having been back on 10mcg after failed 2.5mcg increase I took only 1.25mcg extra t3 and experienced anxiety, wobbly bowels and raised erratic pulse reaching 96 after breakfast as well as feeling extremely tired. I felt a bit better as the day went on but very tired and with the usual horrendous vibrating/shuddering/buzzing but then started to feel very bad at 2pm after which I began feeling very anxious, wobbly bowels, exterior shaking, a sensation of butterflies in stomach, lightheaded, weak limbs and pulse climbed to the 100s. This period is like an adrenaline surge/panic attack but I have had them and it isn't that - I don't feel panicked and am not in control of symptoms and with added weakness and feeling horrible. It has happened to me twice before over the last couple of months but both times it occurred 2 hours after skipping my morning levo dose and I was fine after for the rest of the day whereas today it happened 5 hours after my tablets so I was puzzled by it and I am also a little frightened. Right now its 3.30 and I still don't feel great - my pulse is still 80-84 normally it is 68 about now and I still feel anxious, a bit nauseous, wobbly tummy and bowels, my eyes feel sensitive, I have a dry mouth and I also now feel cold. I also haven't eaten my usual snack as I don't feel hungry and I don't know whether to take my 2nd t3 dose. All this has seemingly happened from only 1.25mcg extra t3 over 6 hours ago (although the buzzing has been dreadful for the last week but I felt ok and pulse was never higher than 72-76). Is this something to be concerned about? - I have heard of adrenal crisis but I don't think I have addisons as I have been on 75mcg t4 and 10mcg t3 since january and I know it typically involves vomiting etc. The test likely won't come until monday/tuesday next week. Should I just try and deal with these symptoms as best as possible or do I need to be concerned?

Thank you

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7 Replies

Did your Endo tell you what your results were? Sadly many Endo's don't have enough experience of pituitary/adrenal issues. Are you able to do your BP? Do at least 2 readings if you can as the first one isn't always accurate. The signs of low cortisol are vomiting, diarrhoea, feeling shaky/dizzy, low BP, fast pulse, if you start slurring your words then it has gone too low & you need emergency treatment. There are 2 forms of adrenal insufficiency, primary which is Addisons & is caused by an autoimmune condition ro secondary which is where the pituitary gland is not producing enough ACTH to stimulate the adrenal glands to produce cortisol. Both are treated the same ie with steroids. If you feel you are becoming really unwell then you need to call 999 & say possible adrenal insufficiency crisis. It is a life threatening condition so please don't ignore it. Tell any medic you see that you may have adrenal insufficiency. Take care. I have secondary due to a pituitary tumour.

liaratsoni profile image
liaratsoni in reply to

Thank you! The test was a bit of a shambles - it was taken at roughly 12.30pm not 9am, I had been walking around and I wasn't given the range but it was 241 - this was last October before I started on any thyroid hormone at all. My dad has a blood pressure machine I think so I might be able to do that!

I don't have any vomiting, diarrhoea, or slurring words, external shaking has gone now and pulse is below 90 now. I still feel a bit lightheaded, wobbly tummy/bowels, internally shaky, warm, tired and strangely have flushed cheeks but I will keep an eye for those symptoms. I'm frustrated because similar to this happened in March and I went to a and e but they did the basic tests/ecg and said electrolytes/heart were ok. After that I asked my endo again about cortisol but he said we tested it was fine and ended it there. That's why I decided once again to get the test myself - I kept putting it off because my parents are paying for it and they have paid out so much already but I don't think I have a choice now!

in reply to liaratsoni

So the level is not too low but does need checking as it cols have changed since then. Good luck x

liaratsoni profile image
liaratsoni in reply to

Thank you 😊 hopefully tomorrow is better! Still feeling bad and pulse still 84-88 right now and it’s never been this high this long! x

posthinking01 profile image
posthinking01 in reply to liaratsoni

HI there - not sure what your levels of T3 are or whether you are being prescribed T3 because it is felt you need it or self medicating. I had a bad experience with T3 similar symptoms and it was the T3 - I was converting OK unbeknown to me.

liaratsoni profile image
liaratsoni in reply to posthinking01

Hi! Thank you for the response! I was prescibed T3 by an endo as I am a very poor converter. Last blood test when these issues were bad T3 was only 43% through the range and I have previously not had these issues with T3 when my level was much higher :)

posthinking01 profile image
posthinking01 in reply to liaratsoni

Hi there thought this might help with why you might not be converting.

rootfunctionalmedicine.com/...

Hope this helps.

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