Just wanted to ask plz if any members on here had terrible head pain & ear pain/tinnitus with sound sensitivity plus stiff neck because of very low cortisol? I’ve had hypothyroidism for 20 plus years - last July woke up with extreme fatigue & the above symptoms which to date have not improved! Seen neurologists - had occipital nerve block because I have all the symptoms but unfortunately it didn’t work & tmrw going for a cervical Botox assessment ! One neurologist thinks occipital neuralgia - another Dystonia but I was recommended by a friend to get my cortisol levels tested & they are v v low - 60 right near the bottom ! I’m seeing a private endocrinologist aswell & he wants me to try T3 once the cortisol issue is resolved. Any help or advice would be greatly appreciated & welcomed. Thank you 🙏
V low cortisol & awaiting to see NHS Endocrinol... - Thyroid UK
V low cortisol & awaiting to see NHS Endocrinologist
How much levothyroxine are you currently taking
Do you always get same brand?
What vitamin supplements are you currently taking
Do you have thyroid and vitamin results and ranges you can add?
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Do you have Hashimoto’s?
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
I have adrenal insufficiency so have periods of low cortisol but I don't get the symptoms that you are experiencing, they aren't usual symptoms of low cortisol. With low cortisol you could get a headache, a fuzzy headed feeling, nausea, in extreme cases vomiting & diarrhoea, confusion, loss of consciousness in which case it's a medical emergency. Have you lost weight? Can you sleep for England? Hope you get some answers soon.
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With such a low result for a blood cortisol test isn't it essential to get tested for Addison's Disease?
Yes but she says she waiting to see an NHS Endo.
Well I have the chronic headache & nausea - Vomited & diarrhoea all night twice now & GP is aware of this - obviously terrible fatigue & weight loss yes (2 1/2 stone) !
I sleep for about 12 hrs & when I wake up I have about 2 hrs feeling not too bad but then I just want to go back to 💤 sleep !
If this happens again & you feel really unwell then go to A&E & tell them you are being investigated for Addison's, it is possible to go into crisis which is a medical emergency, you can die from it, so please take care. Unfortunately many GPs don't have a lot of experience of pituitary/adrenal issues as they rarely see them in their lifetime. The Endo should do a short synacthen test, it is important that they do an ACTH blood test at the start of the test, the blood from this should go on ice straight away, this shows if it is a pituitary issue. Sometimes it is possible to pass the SST as the adrenals respond to the artificial ACTH but the problem could be with the pituitary gland, especially if you already have a thyroid issue.
I agree with PaulineS. Get immediate help. Call 999. It’s a very serious condition Addison’s. Don’t put it off. Tell them you are being investigated for Addison’s. This happened to me. I was taken to hospital and given 100ml of hydrocortisone intravenously immediately and a synacthen test the following day. My cortisol was very low. I past the synacthen test just. My issue wasn’t my adrenals it was too low T3 causing everything to plummet. 999 will give you help and a synacthen test. Don’t wait for an NHS Endo they might be a diabetic one! Just do it. They will run loads of blood tests in A&E and get you checked out. Ask them to check all your thyroid bloods including T3 too.
Don’t wait any longer for an NHS Endo. It’s your life and health. Only you can progress things. Call you private Endocrinologist tell him that you are being sick and lost 2.5st. Tell him you are having a crisis.
I’d go to A&E today. Don’t delay things any more waiting for an NHS Endo appointment. A&E will do a synacthen test today!! Sounds like you’ve had an Addisons crisis!
I hope you have got yourself to A& E, as this needs to be sorted out ASAP as if you do have a crisis.
If you don't produce enough Cortisol your Thyroid meds will not work as need Cortisol to get the thyroid meds all around and into cells,
If you dont get down the Hospital ASAP( not trying to scare you but just trying tomake you aware ) as if it is Addisons and you have a crisis the outcome will not be good,
You will need Hydrocortisone tablets and possible drip /injections till you feel well, anything under 100nmol on cortisol, if that is a serum blood test result, needs an emergency referral to A&E and Endocrinologist yes state you have been under investigation for Addisons / Adrenal insufficiency.. if you have a mobile phone got too
it has lots of leaflets on the web page telling Hospitals and GPs in diagnosing it and treating it help for the medical profession, is quite informative website ,
Im afraid Drs know even less about Addisons than they do thyroid, so get these leaflets of that web page screen shotted ready to show A& E or GP,
Hopefully you are at the hospital by now
Please let us know how it all goes and keep us updated to what's happening
I wouldn't touch T3 as yet till they have tested Adrenals as Thyroid meds T4 or T3 can cause an adrenal crisis if you have un diagnosed Addisons
Take care
Good luck x
its way below the bottom of the range, different ranges from NHS , The NHS is anything under 140nmol shoud be sent for SST and under 100nmol to send them straight up to the hospital as an emergency, but what time was this test taken, even if late its a bit too low ,was that medichecks results as if was ent in post it wouldnt be so accurate as test done at surgery as it should be an *-9am serum blood test and sent on ice to the hospital,
well if you get worse just go to A&E as will get seen staright away heres what your GP should be doing in this leaflet 
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