Low Cortisol - help please.

[Tristy]

Hi, I have finally got all thyroid hormones optimal since starting T3 and thank you to all on here for all your help.

I ordered an adrenal saliva test months ago and did the test recently just to check all ok. The morning results and DHEA are very low:

Cortisol AM30 - 5.4 Optimal range 14.00-25.00

Cortisol Noon - 4.9 Optimal range 5.00-10.00

Cortisol Evening 4.00 Optimal range 2.00-5.00

Cortisol Night 1.30 Optimal range 1.00-4.00

DHEA 50 (106-300)

Hormone Comments on Test:

The suboptimal diurnal cortisol pattern and reported symptoms are consistent with established (Phase 3) HPA axis (adrenal gland) dysfunction.

DHEA levels typically decline with age and the level measured here is below the reference range. The low DHEA level may warrant supplementation for optimal well- being. Note: Supplementation with DHEA may increase testosterone and/or estradiol levels.

Is there anything I can do to help these levels? I don’t want to rock the boat too much as I have just got all my thyroid and vitamin levels optimal. It just seems the morning levels are so low. Any advice would be greatly appreciated.

[radd]

Tristy

Prolonged low thyroid hormone influences the workings of the HPA axis and can take months for chemistry to improve after optimising thyroid hormone.

Adrenal function can be improved with optimal levels of iron, vits/nutrients and a healthy lifestyle & diet with regular meals.

Adaptogenic herbs known to normalise cortisol levels that I have used are Liquorice Root (not to be used with high blood pressure), Siberian Ginseng Root, Ashwagandha Root and Ginkgo Biloba.

Some members have had success with adrenal glandulars. I didn't. As your cortisol levels are low it may be prudent to avoid the “whole glandular” which also contains adrenaline as this is probably what you are running on anyway. Adrenal Cortex Extracts are better for people with low cortisol.

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HPA Axis

drhedberg.com/the-thyroid-a...

[Tristy in reply to radd]

Hi radd,

Thank you so much for your reply and the article is interesting.

[Hidden]

Before you start to take any supplements then please get an am blood cortisol done by your GP to rule out either Addison's disease or secondary adrenal insufficiency. By taking supplements especially adrenal ones could mess up any test results so you won't get a true picture of what is going on. Plus by taking supplements you could make things worse & so end up needing steroids for daily living but this must be decided by an Endocrinologist.

[Tristy in reply to Hidden]

Hi PaulineS,

Thank you for replying.

I had a cortisol test done by my Endo and he said it was all fine. It was the 24 hour urine test.

[Hidden in reply to Tristy]

Sadly not all Endo's are not conversant with pituitary or adrenal issues hopefully the one you saw was!

[Tristy in reply to Hidden]

Thanks...I know exactly what you mean!

[McPammy]

Hi Tristy.

I have too just got my thyroid sort of levelled with moving away fro Levothyroxine which I was on for 11 years with difficulties. I’m now on NDT Erfa and feel much better after 9 weeks. I’ve had low cortisol for the first time in my life that I am aware of. I’ve been hospitalised several times this year collapsing not fainting with muscle weakness severely. Cortisol in afternoon was around 68 and the range is 155-600 here in Chester area on several occasions. I has a short synacthen test and was border line Addison’s. So they did nothing and still have done nothing even collapsing several times and being in A&E!! My ACTH signal from head to adrenals was too low at 0.5 the range here is 2-11. I was booked for a test to check why the weak signal. This was cancelled by my Endocrinologist 2 days before it was due after waiting several weeks with no explanation from him!!

I think you need a short synacthen test to rule out Addison’s. Also an ACTH blood test to check if it’s a weak signal to your adrenals.

I had my 9am cortisol bloods recently and it was 250. Not great but manageable. I’ve had a terrible time. The worst 6 months of my life dealing with the NHS over this issue. 7 months ago I thought the NHS was OK. Now I think very differently. I think a lot of it depends who you get to see. So many Endocrinologist are diabetic focused and not educated enough to deal with cortisol and thyroid conditions. They seem to just look at numbers and not engage with how the patient is feeling. We are all different with endocrine issues for sure.

I hope you get it sorted and would like to hear your progress. Don’t be fobbed off and keep pressing to get the correct treatment for you. I know what you mean when you say you don’t want to rock your thyroid boat. Cortisol and thyroid are very closely linked. They need to be balanced and in harmony.

Sorry for long message. Just that your story sounds very much like mine, which I haven’t come across on here until today.

PM me anytime if you want to.

Best wishes

Pam 👍

[Tristy in reply to McPammy]

Hi McPammy,

Thanks for your reply. The worst thing is I really don’t feel too bad, it’s just early morning when I wake up craving chocolate and sometimes fast heart.

Does the GP do the synacthen test and also the ACTH test? If I have problems getting this perhaps I could do it privately?

Thanks for your help with this. I’ve come so far with my thyroid. It seems this is the last hurdle at the moment.

[McPammy in reply to Tristy]

The hospital will do the short synacthen test. It’s easy and painless. They give you false ACTH to boost your cortisol. Then check your cortisol every 30 minutes with blood tests. I felt great afterwards as it boosted my cortisol high.

The ACTH bloods can be done by your GP maybe. Or definitely in hospital. An Endocrinologist May have to request the blood tests.

Good luck.

Pam

[Tristy in reply to McPammy]

Thanks Pam

[Hidden in reply to McPammy]

You need to see another Endocrinologist with cortisol levels at those levels! One who understands pituitary/adrenal issues. The range of 150-600 is for the whole day, cortisol varies throughout the day so should be at the highest first thing in the morning, yours at 250 should be double that nearer to 500! so 250 isn't a manageable one! A cortisol of 68 in the afternoon is incredibly low & needs treating. The fact that your ACTH was very low shows that it is a pituitary issue not adrenal. Sadly most Endo's think that if you have timed on the test ie doubled the result then you are fine but if the base line cortisol was low & your ACTH s very low then you have secondary adrenal insufficiency & not primary which is Addisons. If you are on Facebook then join the UK Addisons info & support group where there are some very knowledgeable people who would help you. It is your right under the 2102 health & social care act to have get a 2nd opinion which you need!

[McPammy in reply to Hidden]

Hi. I agree entirely 👍. I’ve been battling with my Endocrinologist who is a Professor at Chester Hospital. He cancelled my test to check my pituitary and hypothalamus weak signal 2 days before it was due with no reason. I was shocked. My GP is chasing this up. I’ve asked to see another Endo but my current Endo is everyone’s boss in this area. So might have to go out of area to feel reassured. I had an MRI and they said pituitary was ok. My cortisol was very low, TSH very low, ACTH very low, heart rate 46 and blood press very low too. I collapsed. Then the Chester Endo said while all this was going on that I had no Endo issues!!! And sent me off to the cardiac ward. Nothing showed up there. The Professor Endo I’m under said he had no idea why my cortisol was so low on multiple occasions and referred me to a neurologist at the Walton Ctr. They are confused why I was sent to them they said. I’ve gone round in circles. And collapsing multiple times taken into A&E then they say they can’t help me as it’s a spealists area. It all beggars belief. I’m going to see my GP once again on Monday to try and finally pin this down somehow. However, the past 2 weeks I’ve picked up for some unknown reason. I can now walk and move normally as for months I was so weak I could hardly move. Couldn’t even hold a knife and fork to eat. Crawling around on my hands and knees to get to the bathroom. I feel like I’ve been forgotten and left to deal with everything with just my partner who has and is being remarkable. Anyways I’ve picked up and not sure why or what’s gone on. All I have done at my request is change from Levothyroxine to NDT 9 weeks ago. As I noticed I wasn’t converting T4 to T3 well.

I have joined FB Addison’s. Most people can’t belive what’s happened either. I’m not religious but I have been praying for help. I’m getting better that’s the main thing hey.

Thank you for you support it is truly appreciate sincerely.

Thank you. Pam x

[Hidden in reply to McPammy]

Good luck McPammy,, he is certainly putting you through it! The Addisons society may be able to help in pointing you in the right direction to a good Endo. x