Cortisol result help in interpreting please

[Shebbie]

Hi

Hashimoto's sufferer for 40 years and ill most of that time. Worsening symptoms although I have had these symptoms before just not as long lasting or debilitating as they have been over the last 12 months. Treated with Levothyroxine only (this after being advised in writing by an endocrinologist 6/7 years ago that Levothyroxine sadly doesn't convert for me but to keep taking it as there is nothing else he is able to offer)

I have done cortisol tests before and had advice from the lab doctors (private tests) both of high serum cortisol and low saliva cortisol but never known what to do to help myself. But now I need to see if there is anything I can do to try to improve the awful symptoms I have.

I did a saliva test last week and the results are as shown above. Their doctor commented as follows

All results are within the 'Normal' range. Here are comments from our resident doctor regarding your results:

'The waking salivary cortisol level is low, which may imply adrenal insufficiency. A generally low level of salivary cortisol as recorded here throughout the 24 hour period would be considered by some to indicate adrenal fatigue, although this a somewhat controversial label. Usually with cortisol there is a peak at around 9am, or within the first few hours after waking, followed by a steady decline throughout the day. Cortisol levels will rise briefly after eating, and also rise in response to stress and in those taking steroids (even as creams or asthma inhalers). Correlation with a serum sample taken around 9am would be useful. Repeat 24 hour collection also could be considered to check for consistency.'

I have little knowledge of cortisol and it would really help me to have advice from members here please.

[McPammy]

Have you ever checked your T3 level alongside T4 and TSH. When I had persistently low cortisol readings and felt dreadful my T3 was also too low. I had a synacthen test which proved my adrenals were working well. I was prescribed T3 liothyronine along with my usual levothyroxine. Oh boy oh boy what a huge difference T3 has had. My cortisol shot uo from 150 to 450 within a few weeks and my T3 also from 8% to 80%. I felt fantastic. It’s wasn’t my adrenals it was too low T3. It boosted just about everything in my body.

Get your T3 checked and if too low request a trial of t3 and t4 combined medications.

[Shebbie in reply to McPammy]

Hi and thank you for your replty

Yes my last private test was in February and the results were as follows

TSH 0.16mlU/l (0.27 - 4.2)

Free T3 7.0 pmol/l 7.00 (3.1 - 6.8)

Free T4 18.00 (12 - 22)

NHS test results (recent)

4th Jan '24 TSH 43.00, Free T4 13.50 (10-20)

12th March '24 TSH 0.79 (nothing else tested)

I think mine may be a case of my adrenals being the issue. I've just asked my gp for a referral to endocrinology. She agreed to refer me.

[McPammy in reply to Shebbie]

You’ll need a synacthen test if you haven’t had one already. Your T3 result was very high at 7.00 but you TSH result of 43! is far too high with a very low T4. Then a TSH of 0.79 very low. All over the place!???

[Shebbie in reply to McPammy]

Thank you. Do I order that test privately or will the consultant organise it for me? I'm sorry but I have so very little understanding of cortisol issues. I'm researching now to try to get up to speed with what I need to ask for and do in the short term to try to increase my cortisol level.

My tsh results have always been up and down like this but no-one seems to care. I've been referred for every test under the sun lately but had to specifically request to be referred to an endocrinologist today. I would have thought that would have been the first referral they would have made over recent months. But at least I have been referred today. The doctor said it will likely be quite a wait so I may have to pay for a private consultation.

[McPammy in reply to Shebbie]

I had no idea about cortisol with until I hit rock bottom. NHS waits are usually months whereas private can be very quick like a couple of weeks. I went private only and was quickly helped.

If you decide private let me know by private message and I’ll pass on his details if you want.

[chrisbuy63]

Take all your test results with you to discuss with consultant and don't get fobbed off because they clearly show widely fluctuating results.. There can be swings with Hashimotos even under usual conditions but something is causing them to swing so rapidly. Adrenal insufficiency maybe the cause but you would best get medical help to address that first so your hormone replacement then works more efficiently maybe all your hormones need testing. I hope you get the help you need to start feeling better, if you can afford private then that might be the way to go to get things moving even if you then revert back to nhs .

[Shebbie in reply to chrisbuy63]

Thank you. Yes I do need an endocrinologists involvement sooner than later. I won't be able to continue on the private path but will start out that way I think. Thanks for your encouragement to get on with it

[JumpJiving]

If you have a good GP, show the advice from the resident doctor to your GP and ask for a 9AM cortisol test TOMORROW (or, even better, a referral to Same Day Emergency Care for just before 9AM TOMORROW). If your GP won't do it (mine hates doing anything as a response to a privately done test), get it done privately, but with the blood drawn at 9AM. If that test comes back below the reference range, you will then want to get a SST (short synacthen test) done, which your GP should refer you to the hospital for (my local hospital does it in the Same Day Emergency Care dept or a bit that is an offshoot of that). The SST is used to identify adrenal response. Adrenal insufficiency should not be taken lightly - it is life-threatening, so if a doctor is suggesting it as a possibility, get it followed up asap. People (such as me) with adrenal insufficiency have a strict medication schedule and carry emergency injections. The standard question I get from health professionals is "what incident led to you being diagnosed", as it's the lucky few that get diagnosed prior to going into adrenal crisis

[Shebbie in reply to JumpJiving]

Gosh your response has left me open mouthed as I understand so little about adrenals and cortisol. I don't have a particularly good gp or practice.

I wont be able to contact my gp until morning as they have a system of only allocating slots for phone consultations early morning and lunch time. All slots will by now have gone.

I will try ringing and asking if I can have a 9am cortisol test.

How long were you suffering before diagnosis as I've been poorly like this since 2016!

[JumpJiving in reply to Shebbie]

I went downhill over the course of 12 months. Had I not had a private blood test done and then advocated VERY strongly for myself with my useless GP practice, I probably wouldn’t have survived Dec 2023. Even now, I am battling my GP and endo. Seeing GP tomorrow and will be asking for a referral to a different endo

[Shebbie]

I'm beginning to realise how ill I really have been over the past year.

Like you I am determined to try to feel better and will battle.

It's a bit late for me at my advancing years but all the more reason to try to experience some half decent health.

Good luck with your GP tomorrow

[posthinking01]

If anyone would like a copy of the document listing the errors made in the blood test results range etc. please PM me and I will send you the link and you can perhaps print out and show your medical team.

[TiggerMe Ambassador]

I don't really understand the results... for the wake up 'normal' is <20.3 how can that be right??

My waking result was 4.9 (3-16) and then it should increase by up to 50% 20-30 mins after waking but you don't have a result for this? Mine increased to 10.5 (9-26)

Trying to compare them to results I've had and they aren't that bad (mine were lower throughout) are you supplementing with Vit C and salt (adrenal food) then I'd suggest getting some adrenal cortex to support your adrenals, I wouldn't hold your breath for any help from the medics 😕

I had an SST but all that shows is if your adrenals are able to react not how fatigued they are

[Shebbie in reply to TiggerMe]

I really have no idea about cortisol and am finding it hard to discover what I need to know. I agree that these results don't make a lot of sense - at least not to my uneducated eye.

Hence my asking for help in understanding them. It is reassuring to learn that they aren't as low as I imagined. Thank you for your advice on what to take to try to raise my levels - it is really helpful to me to have something to start to do to help myself

[TiggerMe Ambassador in reply to Shebbie]

Your thyroid results really jump around don't they!! That should confuse the Endo 😅

This is quite a good article to start getting your head around the subject... 🤗paulrobinsonthyroid.com/sym...

[Shebbie in reply to TiggerMe]

Yes they certainly do and always have although the endo I saw in 2016 concluded that my thyroid results were very stable. I argued with him but he was having none.

I shared a graph in a post last year - I'll see if I can find it

I was going to ask if you had come across Paul (but didn't know if the rules allowed me to name him - I'm thinking of having a zoom consult with him but my tech skills hold me back. I need to practice zoom which I've avoided thus far.

I've recently bought all 3 of his books

[TiggerMe Ambassador in reply to Shebbie]

I've not read his books just some of his articles, I do like Dr Barry Durrant Peatfields book which I first found in the library 'Your thyroid and how to keep it healthy' and also Dr Myhill has a useful book and website

I've only recently used Teams and it was very straight forward, I wonder if you can get a lesson in the library?

[JumpJiving in reply to Shebbie]

You'd be better off with a 9AM blood test rather than the saliva tests IMHO.

When I had saliva tests done before my adrenals went belly up, the waking range was 6 - 21. Whilst 6 was considered within range, ideally it would want to be a fair bit (my layperson language) higher than that on waking. If your laboratory is working to that same range (with a bit of rounding) rather than just < 20.3, then you are still above the bottom of that range, although not by much. However, I wouldn't take that as a safe assumption as different laboratories use different systems, and things may have changed since I last had a saliva test done. Hence, working with what the resident doctor said - "may imply adrenal insufficiency". You could ask the testing organisation for clarification, or just work with the resident doctor's interpretation and get the blood test done asap. I'd try for the 9AM blood test

[Shebbie in reply to JumpJiving]

I've requested a blood test today. I won't have a response until Thursday but hoping my GP agrees to do a test for me. This way I will know whether to pay privately to see the endo or wait until my nhs referral comes up. I know the endo won't entertain my saliva test results so it would be good to go armed with a blood test result

I really am struggling to understand the private lab results and the doctor's conclusion based on such vague ranges. I think I will contact them and ask for clarification