Low serum cortisol 9am 75nmol: I had 9am serum... - Thyroid UK

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Low serum cortisol 9am 75nmol

Pascha1 profile image
38 Replies

I had 9am serum cortisol few weeks ago and was quite low at 75 nmol 1st Dr I called at surgery said its ok, which I know it isnt so got my normal GP to call me she said she will send me on urgent appointment to get further testing,

Because Covid the refferels services sent me to a useless Endo and had stated the one I needed to see, they have messed me around I now have an appointment April 7th as Endo was on holiday he may bring forward I will find out tomorrow

has anyone here had a cortisol that low annd still passed the SST ?

I have had low cortisol for a while now I had a Synatchen test over a year ago and was

Baseline 127nmol

30 mins 527

60 mins 499

never seen 60 min cortisol go down before on anyones results,

anyway no ACTH taken so not tested for secondary AI

If this isnt Addisons why would my cortisol be this low

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Pascha1
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SlowDragon profile image
SlowDragonAdministrator

What thyroid hormones and vitamins are you currently taking

Recommend you get FULL thyroid and vitamin testing done BEFORE consultation

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

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)

If/when also on T3, make sure to take last third or quarter of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Pascha1 profile image
Pascha1 in reply to SlowDragon

Thank you :)

My Thyroid is all sorted on T3 mono all vitamins very good on Vitamins and all results very good levels Thyroid levels took a while to get them right but know what I am best on

Ive done private tests but GP is very good testing what I want which is good

, its just the very low cortisol I have these days thats very concerning and wanted to hear others that have levels this low

Thank you :) x

SlowDragon profile image
SlowDragonAdministrator in reply to Pascha1

Usually low cortisol improves as Ft3 levels improve

Presumably you split the T3 dose as 3 smaller doses through day?

Have you done saliva cortisol and DHEA test

regeneruslabs.com/products/...

cdn.shopify.com/s/files/1/0...

Pascha1 profile image
Pascha1 in reply to SlowDragon

my T3 level is 5.9 ref range 3.10- 5.9 so T3 is very good much higher I have hyper symptoms on it so T3 thyroid is well sorted I have been stable on T3 a year now :) , yes I did the saliva test a year ago that was also below range, have done another with Blue horizon , had test DHEA is just at bottom of range , oestragen depleted as post menopausel many years I have done extensive testing on everything

I go hypoglycemic at around 4 am which has also been confirmed with Continuos glucose monitor to which Endo knows about said it could be insulinoma or `Addisons been waiting for 72hr glucose test for nearly a year now and more cortisol testing but but Covid has delayed that bu I know hypoglycemic and crave chocolate so fix it with chocolate I have not got Diabetes ! well not yet and hope I dont get it :)

SlowDragon profile image
SlowDragonAdministrator in reply to Pascha1

my T3 level is 5.9 ref range 3.10- 5.9

So this result is from early morning test taking last 1/3rd of daily dose T3 8-12 hours before test

Ever taken DHEA to improve low level?

Hidden may pop along she knows a lot about adrenals

Is your Endocrinologist an adrenal specialist?

Nhs or private?

Pascha1 profile image
Pascha1 in reply to SlowDragon

Hes got a set of tests he is going to do which is quite extensive, believe it or not I was refused by some adrenal specialists as they do not agree on T3 mono , I am taking someone very knowledgable on my endo appointment he has offered me some good tests but Covid has been in my way but GP just made an urget request for him to see me , Just worried really where cortisol is way below range now

Pascha1 profile image
Pascha1 in reply to SlowDragon

Im waiting to add DHEA till get proper testing for adrenals as dont want to confuse results till after testing as dont want to mask it if it is addisons

Merlio18 profile image
Merlio18 in reply to Pascha1

Hi

what brand of T3 are you taking?

I had very bad hypoglycemic symptoms I had to eat a whole bag of fudge! just to drive home from work some days I was that exhausted when I was taking liothyronine and if you look at the leaflet it causes it!

Also when I came off it all my symptoms reduce and now I am stable better on NDT and dont have any severe sugar cravings.

You also might be getting issues from the T3 being so high and hyper symptoms which can affect your adrenals, did you check your adrenal status before you went on liothyronine?

This is for oral but it's the same If you scroll down to other medical conditions it's states liothyronine affects patients with adrenal issues/ insufficiency/ Addisons.

mayoclinic.org/drugs-supple...

Pascha1 profile image
Pascha1 in reply to Merlio18

I am on cytomol and says on my PIL it can raise blood sugar so maybe slightly different to the uk ones, I was on NDT and couldnt convert that I looked almost dead on that a grey colour, I have had sweet craving 4 am since 2004 since started levo back then I didnt like chocolate before then its a 4am thing Im ok in the day I dont eat sweets chocolate then, I may have small mars if I feel a bit wonky hypo....

. No no one ever checked them, but think when went on HRT I felt slightly better but then couldnt get hold of the one I was on and all others made me bloat out swell up so off all them now, , I have been over medicated and was bad, my thyroid i know is best it can be and know not over medicated or under, it took a while to get there but thats fine now and only got that stability on T3 mono I cant convert t4 even in NDT when I go hypoglycemic in the day I get no symptoms, I had a continuos glucose monitor to prove that and 4 am seems the worst time and happens every night, I was hyper years ago so that would of probably been a strain on adrenals then 25 years not treated for hypo with further 16 years under treated on t4 that made me feel even worse ...

,I discovered cortisol was low after saliva test which showed gp who gave me a cortisol test at 8am and it came back bottom of range at 140 had synatchen test as said I was on meds that raised cortisol when had the SST test also baseline would of been less, my old GP thinks its addisons anyway had the more recent test and was 75nmol without the meds and only stopped for 2 days so may be even lower but they are making me wait till begining April to see the endo where nice guidelines say send staright to hospital.. I dont have much ebergy these days so I think maybe Addisons or secondary,, Old GP said Addisons and thinks thats why never felt good on thyroid meds, I will have to see when i get tested again but wouldnt be at all shocked if it is Addisons and if it is quite a few Drs are getting a visit to the GMC :) Thank you interesting your T3 PIL says hypoglycemic mine says hyperglycemic maybe it can cause one or the other :) x

Merlio18 profile image
Merlio18 in reply to Pascha1

That's really interesting I have had similar symptoms

On Mercury pharma liothyronine I looked like death too really grey aswell! I took a photo to show I ill I looked to the endo and he did nothing and that's when I had severe sugar cravings and hypoglycemia symptoms and I also to use to wake up in the night with bad sugar cravings and had to eat a sugary snack like a few biscuits and a brew to get me bk to sleep, I also got a blood glucose monitor too which show it fluctuated how low did yours go at 4am?

It's strange has we have and similar symptoms but different reactions to the drugs I can tolerate NDT and started having histamine allergic type reactions to levo and could only tolerate the free from brand of liothyronine which they wouldn't prescribe me then now on NP NDT I don't feel amazing but stable enough to drag myself to work and back, but levo and some NDT brands I can't tolerate and go really puffy and look sick and get bad hormonal issues

Have you got any hormonal imbalances like estrogen dominance or low progesterone and PCOS as I have issues and it can effect conversion of t4- T3 as estrogen stores up in the liver, so I am working on clearing excess estrogen

With my adrenals been getting bad heart issues and I did the saliva test and it showed really high Cortisol, so went to a naturopath and they gave me some herbal supplements to try help which is helping slowly

I would go to a n e if your feeling rough and lay it on thick as I did with my heart issues I was getting and they referred me for echo, 24 hr and heart monitor and cardiologist although I have to wait til Nov 2021! And I went in August 2020! But I went to the GP they did nothing but if you have an appointment I would keep It but also to A n E to see if they might do some further bloods there and then to make sure your ok to be left another three weeks you do need to research into T3 and adrenal issues if you haven't already as your not meant to take liothyronine if you have adrenal issues so it could be contributing and making your adrenal issues worse as it's all interconnected just noticed on a comment your also mentioned you have - I have a multidrug resistant gene ? How did you get that tested as I have a lot of reactions to medications too so be interesting to see how I could get the test as I have done alot of research into histamine and estrogen issues so it may all be connected was it private or through GP?

Pascha1 profile image
Pascha1 in reply to Merlio18

it goes un detectable on finger prick test and was low on continuos glucomonitor which Endo saw and confirmed going hypoglycemic every night, but his stupid SHO wrote me off the clinic May last year so spent some time trying to get proper adrenal specialist all to said I was ok or said because I am on T3 they wouldnt see me, which I was was put on T3 mono by thyroid specialist with clinical need so get it on NHS Just seems some Drs are scared of it for some reason and would rather see you suffer than use it, , I wasnt wanting to see them about thyroid anyway seems no emergency and that I am ok lets see what old endo says , , he had told me that me going hypoglycemic non diabetis meant insulinoma or Addisons anyway big mess up Covid making things worse . I am past menopause 17 years ago so not many hormones left came off HRT so could get tested properly and The stupid Dr signed me off clinic so now I have no hormones left I think oestragon was 31 last I looked, I had very early menopause when I was 40 but as was just glad no more heavy periods didnt tell the dr so not on my medical records .. I have got pernicious anemia and having silent reflux , no heart problems, just no enegy back kills me and am very stiff and ache most of the time , feel like being sick buy try not to let that happen mind over matter on tht one , seools swing to constipation to having the runs never normal , skin pigmentation comes and goes on face ,never geel hungry but force myself to eat dinner as live alone amd just know if I dont eat I will probably not be able to do much , protien drinks and esy to eat foods but dont enjoy it amd have very little energy to cook much but strong willed and will try stay strong for as long as i can I can not take my T3 in one go I take it in 4 doses and seem to tolerate it then, i think any thyroid meds are not good when adrenals are struggling maybe T3 is easier on them as T4 I may as well of been dead , who knows till they investigate me whilst I am off all the meds that raised my cortisol, .. seeems they know less on adrenals than Thyroid at me expense i fear . I hope you get to bottom of yours soon god luck xx

Pascha1 profile image
Pascha1 in reply to SlowDragon

yes split T3 into 4 x per 24 hrs take 1 at 4am and then spread through day, I tried adding bits slowly to take in one bit like some do but felt dreadful so split it all now Thank you

Pascha1 profile image
Pascha1

9am serum Cortisol 75 nmol ref range 166---507 sorry forgot the ref range :)

in reply to Pascha1

Okay a cortisol level of 75nmol/Ls should be an automatic diagnosis of adrenal insufficiency & your GP should have sent you to hospital in accordance with the NICE guidelines. It sounds like when the SST was done last year your adrenal glands were beginning to show that they were failing. People without any adrenal issues start to make cortisol between 3-4am in the morning which is probably why you are going hypo at that time. Both the 1st GP & your normal GP have demonstrated that they know nothing about adrenal insufficiency & are being negligent, if they were unsure then they should have contacted the Endocrine department which they didn't do so they are putting your life at serious risk of going into adrenal crisis - people have died so please don't ignore it & get onto your GP asap. Here is the link to the NICE guidelines on Addison's, this is what it states: "If the serum cortisol level is less than 100 nanomol/L, the person should be admitted to hospital. Adrenal insufficiency is highly likely."

cks.nice.org.uk/topics/addi...

Pascha1 profile image
Pascha1 in reply to

I got refered to the local endo who I dont get on with his appointment was a video consult what good is that ! so as I hadnt asked for him I rang the referrels to ask for the endo that was going to do the tests before Covid halted all the tests Ive was sent on guide and advice twice its been a nightmare trying to get them to see me, so did another test and came back really low by the time the hospital got my refferel he had gone on holiday , hes back tomorrow so hoping he will bring appointment forward, I am allergic to prodrugs ?Hydro tried it twice as a trial last year and gave me wheezing and took another brand was even worse, so GP couldnt start me on steroids as all prodrugs , which she has mentioned in urgent refferel letter as have funny genetics and cant do any sort of prodrugs to which if addisons god knows what they can give me I have a multidrug resistant gene , so all complicated/

Thank you Pauline

I thought thats what guidelines said as well

You are right the GPs do not have a clue on adrenals. a while back that 1st GP I asked if I could have a cortisol test done he said " I am not going to start testing what I dnt understand, " unbelievable I told him the lab will guide him whats what . ,//

So fingers crossed the endo will see me much sooner , I will phone tomorrow make sure secretary has given him my refferel where Dr states she cant give steroids so needs ugent specialist to work out plan of treatment .. if he doesnt listen god knows what will do, The refferrel service has delayed me seeing an Endo by 2-3 weeks already so they are getting a complaint in when I have energy to do it I called the jospital direct and the patient access guy called my surgery to get the reffel direct as the refferel ccg was delayong things which he sorted the same day ,

I tried really good specialists in Adrenals but they refused to see me re me being on T3 mono, I cant help it if I feel worse on T4, I think if I have got Addisons I will be taking many to the GMC thats for sure there is about 5 endos said I was ok and didnt need to be seen ,its absolute madness, when people think they dont know much on Thyroid Im finding out they know even less on Adrenals Scary Thank you, i Think need to send these guidelines to all who have halted this appointment tbh :(

Thank you for help I apreciate it very much :0

in reply to Pascha1

I'm not sure what you mean by prodrugs? Steroids is the only treatment for replacing the cortisol your body isn't making, there are a few different ones & they come in different brands so it could be that you are reacting to the fillers used in them. It's treated with either Hydrocortisone which is biosimilar to the cortisol the body makes, Prednisolone & very rarely Dexamethasone. It is possible to give Hydrocortisone by sub cut injections if you aren't able to tolerate them orally, there is also a pump but this is only used very very occasionally on the NHS - it's till a developing treatment. Where are you going to be seeing this Endo? If you private message me which part of the country you are in I will be able to help you find an Endo who is conversant with adrenal issues. Please don't leave it long seeing the Endo as you are at risk of collapsing with levels that low, especially with Covid around.

Pascha1 profile image
Pascha1 in reply to

a prodrug is one that goes through loads of enzimes before it gets to the liver to convert to the active drug,, Ie Levothyroxine is a prodrug where as liothyronine is an active drug as soon as you swallow it it works it doesnt have to travel a million miles to get to liver,,, T3 is active.. aspirin is a prodrug that activates in liver paracetomol is an active drug... dexamethasone and prednisalone are bith prodrugs as is hydrocortisone, I cant find an active steroid anywhere Im sure there must be one out there somewhere just hope the Endo knows about one, probably quite rare to not convert prodrugs to active drug properly , my father was the same so guess I inherrited that off him . Pauline he isnt on the list of adrenal specialists but the ones I tried to see wouldnt see me as they dont agree with T3 treatment so bit stuffed really as not willing to go back on Levo as was very unwell on that, this one has agreed to do 72 hr glucose 24hr cortisol profile and i think is Renin and antibodies maybe aldosterone so will stick with him I think as then he wont try to make me even more unwell trying to make me take Levothyroxine again and the way some dont believe T3 mono is good or works is just ignorance I wasnt even going to see them about thyroid but thats the excuse I got and told to go to local hospital which isnt good . they are ignorant on Thyroid, doubt I will get one that knows both, I did try the prof at addenbrookes but he wasnt allowed to see me because covid as about 200 miles away from me, so has been difficult to even get an endo at all in Covid, they seem to only be dealing with Cancer or Covid unless you got to A & E but the days I feel bad i dont want to go there as live alone and dont have the energy to get there , I have someone going to come with me the day of appointment so will get there if having a really bad day and at least got face to face appointment, ive suffered for ages whats another months wait Im hanging on in there im quite strong willed so force food down me as know will plumet quicker if i don't its hard but do it to stay alive ?) .

in reply to Pascha1

I'm not sure where you found the list of adrenal specialists but I have the list from the Pituitary foundation of Centre of Excellence which means they are conversant with pituitary/adrenal issues, so know what they are talking about.

Pascha1 profile image
Pascha1 in reply to

The one I got from them, my last Endo few years ag Plymouth o i saw him is on it but he didnt even check anything my GP told me to go have second opinion as he hadnt even read what she had copied him in on with many things, he was quite rude and arrogant to me , they refferels tried to send me to him 1st, `I tried a really good prof adenbrookes but refferels would only let me have guide and advice as miles away but because covid kept getting pinged back to Plymouth and really didnt want to see him again,

there was a decent one AT plymouth but hes not doing Adrenals anymore, so now back to my second opinion one who isnt on the list but before Covid I was about to have 72hr glucose plus 24 hrly cortisol Profile as on CBg making tablets, so I think getting back to see that consultant he was offering me the right tests, the SHO who signed me off is getting a trip to GMC as he did that underhand, I had told him I will think what tests to have and as covid didnt fancy them making me go hypoglycemic when COVID was rife in hospital and the idiot signed me off the clinic good job didnt go at that time as hospital closed down as all staff patients had Covid so quite glad didnt rush into it

,Thats when tried adrenal specialists but all not good because on T3 and wouldnt see me I have tried many since May June last year with no one wanting to see me re the T3 I get it precribed on NHS as clinical need but they dont believe its good so wont see me, sod how I feel told me to go to the Plymouth one, Exeter not T3 mono friendly only 10mgs so its not been good trying to get an endo during Covid as Refferels kept pinging me back to plymouth . I think this endo ive got appointment will be good I just will only see the consultant no underdogs this time as cost me a year of my life ..

Do you know if Cortisol binding gobulin keeps you alive if you have a crisis if addisons ? Thank you :)

in reply to Pascha1

Did you manage to get in touch with the GP? If you go into crisis then you need Hydrocortisone to recover, you risk dying if it is not treated.

Pascha1 profile image
Pascha1 in reply to

They know I was allergic to hydrocortisone they said on referrel that needed urgent specialist to treat and work out a plan that was over 3 weeks ago, I have contacted the endos secretary on it all they havent got back to me so lets hope I stay well till April the 7th 8th , no one seems to be taking it seriously I feel, I have tried but bow since trying to get an endo since June at least I have an appointment, the Endo maybe not got round to seeing the paper work yet hopefully he will see it and make an earlier appointment, not much I can do really now, I have got a friend who is a Dr coming ro that appointment with me rgrat daye and not many other dates he will be available so might be better waiting and he wont let me get fobbed off when im in with the endo :) if I feel worse I will call GP, 11 or get someone to take me to A& E fingers crossed I saty well till 1st week in April

in reply to Pascha1

If you have any diarrhoea & vomiting, feel dizzy then call an ambulance & say that you are being investigated for adrenal insufficiency & are possibly going into adrenal crisis

Pascha1 profile image
Pascha1 in reply to

I am guessing they are just keeoing me booked in 1st week April as even after calling secretary I have not heard back from Endo , but I w^ll do as you suggest should I strat feeling dreadful with sickness and runs, so far just zero energy a bit forgetful and no motivation iether, at leats wont be going out catching anything as just cant be bothered and trying to keep warm in bed :)

scrubs69 profile image
scrubs69

I had cortisol of 69 but subsequently passed a SST. Obviously pituitary problem could cause low cortisol.

Pascha1 profile image
Pascha1 in reply to scrubs69

did you get rteatment and diagnosed for secondary or are you still waiting to get further testing

Pascha1 profile image
Pascha1 in reply to scrubs69

I have more recently had cortisol of 75 pool and tased SST so still suffering here, they said I didnt have addisons as stimmed ok.. no further testing for secondary, My GP has sent me for 2nd opinion been waiting 7 months still no appoinntment.. its frustrating .

birkie profile image
birkie

Hi pascha1

First I have no thiyroid and after my endo and gp made me try T4 with awful results, I was put on T3 my endo notice my cortisol level was low think it was around 100/125..my gp was sceptical and didn't think it was bad but I was showing signs of adrenal insufficiency, I still am, I had the short synacthen test last year, I received a letter saying my short synacthen test was normal in essences I produced cortisol on the test, I later requested the rundown of the test ie.. They take blood over the period of 2 hours and test the cortisol level, I received a letter again saying I produced cortisol so the test was negative but no run down in hours of how much cortisol I produced 🤷‍♀️, like you I crash I've taken to drinking orange juice as a friend of mine has crashers (think he had diabetes)and drinks it.. but I always seem to crave sugary items later on in the day.. Just yesterday I had the worst one at around 3.30 I just felt like someone had given me a sleeping drug as I could not stay awake 😩 also I've to watch as Ive been increasing my T3 I'm having hyper symptoms although my actual T3 level is still quite low and my TSH is 14.5..t4 very low but to be expected on just T3.. A few years ago I was on steroids for a colitis flare up in hospital introvines first then I was on table form for 3 months, they were the best 3 months I've ever had, I had energy no crashes, my body pain diminished, I felt fantastic, but as I reduced the steroids to gradually come off them everything came back and I've been the same ever since, I recently asked my gp for one months trial of steroids just for some relief of the bone/muscle pain but he refused, I have ostio arthritis and ostioporosis so the pain can be really bad 😩 my surgery has only offered me opiates which I hate, I hope you can get your appointment brought forward, like you covid is hampering me to I've never seen my endo yet, even after thyroid removal.. Its not right..

Good luck❤️❤️

Pascha1 profile image
Pascha1 in reply to birkie

opiates would decrease your cortisol even more which isnt good, :( you should get the results and put them on here SPauline will help you with results you need the ranges as well as all hospitals are different, I think possibly the adrenals are on way out but they dont seem to treat till you are in a crisis thats what it looks and feels like to me, if you pass stim they say your ok, and we know we dont feel ok :( Good luck I would keep checking Cortisol to make sure it doesnt go below range, but even when it does as you can see they dont seem bothered about it :( x

Swanagegirl profile image
Swanagegirl

I second Pauline - you are at very high risk to life at the moment. I don't think you need to worry about what thyroid meds you are on - What they should be running around about is your cortisol level. You must avoid at all costs Covid or any other infections. Are you craving salt or salty foods or sugar ? You must be exhausted ?

I would suggest you join the UK Addison's facebook group facebook.com/groups/1759489...

Toto88 profile image
Toto88

I had low cortisol of 60 & even when I was contacted by letter from the NHS Endocrinologist, he was not v helpful & said that because of the covid situation he couldn’t do the synacthen test. Luckily I am at the mo under a private Endocrinologist & he pushed for me to get the test done which apparently came back normal. I then had another cortisol test about a month later & this time it came back normal but still I’m v unwell. I am currently having to up my levo because I’m still hypothyroid & it has been 2 weeks so far but if anything I feel worse so I’m emailing my private Endocrinologist today ! I’m hoping to start T3 treatment as soon as possible to see if this helps.

Ilovethesea profile image
Ilovethesea

Hi Paschal, I have read all your posts with great interest. I feel so sorry that you have met with so many obstacles, at a time when you you must be so exhausted and clearly need support to sort this concern out. I too have no Thyroid since 2011, and everything has been a battle, until i found Healunlocked. I only wish I had found them before i did. I recently had a saliva test done and it showed an overall daily of of 35.4 ( 20.5 - 74.0) but my G.p. Brushed off the test as not valid. I had it done by Regennerus). On reading your story, It has made me realize I should of been stronger and pushed to have another SST, ( i was there for G.I.Symptoms)which I suppose could be related, but I let it slip by. I first had a SST done in 2017 by an Endo who told me I didnt have an endo problem, that I could put it well to bed. He was so rude, I was taken aback, there fore never did ask for the actual results, I still live with a lot of varying symptoms. Despite blood and vit levels, in better ranges. I am still only on monotherapy with T4. I now believe my cortisol must have somethin to do with it, so thank-you for for sharing your experience, it has helped me to continue on with this complex journey. I hope you soon recieve the correct Professional treatment you deserve.

Pascha1 profile image
Pascha1 in reply to Ilovethesea

Good luck it is hard work trying to get to the bottom of it and seems many hurdles to jump, you could ask your GP for an early cortisol test ond if under 400 ask to be ferred for synatchen test and make sure they do acth I think if they had done mine a year agi I wouldnt of wasted a whole year, they seem ignorant on it all, , I feel bit better since T3 as on T4 i was feeling quite dead, you need to find a endo Thyroid uk has a list of endos who will prescribe an add of t3, which most who have had thyroid destroyed will feel better on so worth looking into.. good luck , me im sure bsadly treated thyroid has caused my adrenals to suffer, but doubt endos wil agree thats the case.. x stay strong :)

Ilovethesea profile image
Ilovethesea

Thanks so much Pascha1, for your help. My understanding is this will be two different tests to ask for?? as they are both hormones. I already recieved the list of endos from Thyroid uk. But not yet acted as i was waiting on the Covid situation moving further along the line. I do believe there is a endo on the list in my area, and do know he is apparently excellent with Diabetes, lets hope he is with Thyroid conditions. Hope to arrange to see my G.P. soon so I can do it all together. Last time I saw her she refused me T3 trial, implied I would have to buy it myself Thanks again and I wish you all the best for you on your continued journey.

Wired123 profile image
Wired123

Some interesting experiences above.

I’ve had historically low cortisol in the mornings (c150) and always struggled to wake in the mornings for work.

I added T3 and now never struggle to wake. It’s a known fact that T3 can help better regulate cortisol.

I’ve had the SST and also the Insulin Tolerance Test. Both came back ok.

An Endo also suggested I go for a run at 8.30am and then have my cortisol tested at 9am (ie, run to the clinic) and this time my cortisol was good.

So the conclusion is my body can make enough cortisol “when needed”. Which basically means when my back is to the wall, my body releases cortisol as part of the fight or flight.

I would be wary of adequate SST and ITT results as they are really pushing your body to the extreme to see the cortisol response. It’s good to know your body can produce it when desperate but that still doesn’t mean you don’t have a day to day disregulation.

Keep at it and keep pushing the doctors to do the tests and come up with a solution. Endos are a lazy bunch and don’t like to put the work in when it’s borderline conditions.

Pascha1 profile image
Pascha1 in reply to Wired123

I was on HRT and some other meds that make cortisol binding gobulin so 1st test which the Endo im seeing knows about, I was about to get tested again when stupid Senior house officer signed me off the clinic, so thought go for Adrenal specialists but kept pinging back to the local hospital to whom I had lost faith in when he treated my thyroid, he wasnt listening, if he had he may have realised I had a cortisol problem anyway with Covid and me being on T3 mono the adrenal specialists either didnt read the refferel properly but also rejected seeing me as T3 mono and told to go to local hospital with Covid, so have managed to get back to endo where SHO signed me off as he at least understood the meds I was taking raised CBG Cortisol.. so at least hes researched that, I am just glad I have actually got appointment after months trying since end of may June .

I did feel buit better with T3 and at 1st my cortisol did raise to about 160 but has plummeted again I take a bit set alram to take re paul Robinson but now my cortisol has pumetted so think is beyong on how I take my T3,

I have done much research waiting this appointment so have learnt a bit on what my meds did have even got the pharmacutical company involved as they hadnt stated my meds made cortisol on PIL so they want to do case study on me to do what with I dont know, but they did send me evidence it made it, but Ive not been able to get an endo who uderstands so has been complex and difficult for me, but had my old GP email quite a few specialists on it all,, its not that straight forward and the ones who do understand it because of Covid I am not allowed to see them so only got guide and advice and to be honest my last endo was on the right track so feel he will be ok, , he was on holiday when je got the refferel through so will have to keep calling to make sure hes seen how low my cortisol is and remind the secretary i cant take conventional drugs so if is addisons I am left at risk,, no ones seems to be worried so im trying not to :)

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Pascha1 in reply to Wired123

I am now on T3 mono and cortisol is at times 75 and on set was 90 baseline endo says its not addisons but no further testing grr

Wired123 profile image
Wired123

What did you mean by this:

again I take a bit set alram to take re paul Robinson

Pascha1 profile image
Pascha1 in reply to Wired123

Paul Robinson on facebook, he wrote some books ob thyroid , one was how to take T3 and suggested to take a small bit an hour or so before you wake up as you need T3 to help make cortisol, hes got a web page hes very good a British man who has hypo and got well and helps others get well.. I think my adrenals have had it though.. I think he also posts in this group at times :)

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