cortisol levels

[RoseStar]

Recently diagnosed with Hashimoto’s and wondered if anyone has noticed their 9am cortisol levels drop just before thyroid diagnosis? In October, mine was 401 (ref 100-1000) and then in March this year it had dropped to 271. (Got diagnosed around March time with thyroid). I showed it to the endocrinologist and he said it’s odd but it’s probably just something to do with how they transported my blood?! He wasn’t concerned. But then he did bang me straight on 100mcg of Levothyroxine, which made me extremely hyper 🙃

I feel so shit all the time - so dizzy, headaches, fatigue, muscle pain, nausea. Also have PoTS, so know this can have an effect. Levothyroxine has done nothing for my symptoms and I feel like a bit of a fraud because my TSH was only 4.82 and T4 still within range, only mildly elevated Thyroglobulin levels. TPO was fine when tested in October. I’m so tired of living like this. I feel like I’ve had every test under the sun and the doctor is thoroughly sick of me

[Hidden]

Hi RoseStar, it’s very common to have low cortisol with low thyroid function. You sound like you may have low cortisol if you’re experiencing those symptoms on thyroid hormone. In my bio is a collection of quotes from some reputable thyroid self help books that will give more insight in cortisol and thyroid hormone. Give it a read and see if it maybe resonates 🙂 x

[humanbean]

In October, mine was 401 (ref 100-1000) and then in March this year it had dropped to 271.

Cortisol has a circadian rhythm. It hits a peak in many people at around 8am - 9am in the morning, but people with insomnia or who work shifts might have their peak cortisol at a different time.

If you had your two tests done at different times of day they will inevitably give different results, and they might be at wildly different levels.

I've added a poor quality picture, but it gives you an idea what I'm getting at.

Cortisol - circadian rhythm

[RoseStar in reply to humanbean]

thanks but both were just before 9am

[jade_s]

Starting thyroid medication is known to reveal/exacerbate adrenal insufficiency (often Addison's) and is usually even warned about on levo patient leaflets. Mine was revealed about 2 years after starting levo.

I've not heard it explicitly drop like that due to levo, but Addison's is progressive and cortisol levels will drop over time.

That 2nd one is at a very low level. A proper endo would have ordered another fasting morning cortisol together ACTH - taken directly at the lab since ACTH has to be put on ice immediately. He would also have tested sodium and potassium. And then should have ordered a stim test.

nhs.uk/conditions/addisons-...

Pots can also be from the low aldosterone seen in people with Addison's.

So i would say take an advocate with you (spouse, family, friend, neighbor), and insist on proper testing for adrenal insufficiency.

Print out the list of symptoms and mark which ones apply to you. nhs.uk/conditions/addisons-...

Failing at that, see another endo. Addison's / adrenal insufficiency is serious and this endo is crazy for having dismissed these results.

Best wishes.

[RoseStar in reply to jade_s]

oh my goodness, I just checked the NICE guidelines and cannot believe the doctor didn’t even refer me in the first place!! The doctor said my cortisol both times was absolutely fine and I would be a lot poorlier a lot quicker if it were Addison’s. What were your numbers when you got checked?

Cortisol

[jade_s in reply to RoseStar]

Unbelievable i'm so sorry. Well it is believable but terrible! If I remember correctly, my levels were in the low 300s so not outright diagnostic but in the 'not excluded' range.

As with most autoimmune diseases, Addison's is progressive. You don't go from great to dying overnight - there's a (long) intermediate phase where people can somewhat recover but it becomes more and more difficult. Why is that so difficult for them to comprehend 🤷‍♀️ Some people only get diagnosed once they're in a serious accident & go into a life threatening crisis - shouldn't have to come to that with all the available modern tests.

[RoseStar in reply to jade_s]

It’s shocking isn’t it! I honestly can’t quite believe 271 hasn’t been flagged - by the doctor or the private endo I saw about my thyroid!! What were your symptoms? I don’t have pigmentation, weight loss or salt cravings 🤔 Did you slowly decline over the 2 years?

[jade_s in reply to RoseStar]

Yes very shocking! I'd even say malpractice but ok..

I had hyperpigmentation going back to when i was a teenager. Salt cravings. No weight loss. I declined over several decades i'd say, but it really became obvious on levo. Yes i gradually got worse & worse & worse.

Diarrhea on thyroid meds. Shaking.

Unable to recover from exercise, progressing to unable to recover from any activities. Exhausted to the bone. I'd "crash" often, yelling at everyone & unable to get off the couch. Dizziness. Weak.

Irritable, cranky, couldn't tolerate crowds. Would run out of shops leaving things unbought, run out of restaurants because they were overwhelming with all their yacking customers who wouldn't shut up...

Pain everywhere. Aching to the bone.

Those last 4 were also affected by b12 deficiency & being hypothyroid but these were all resolved by hydrocortisone to varying degrees.

Hyperpigmentation disappeared within 2 weeks of starting hydrocortisone, and in places i didn't even realize were hyperpigmented!

That comes from high ACTH. If for whatever reason low cortisol is due to low ACTH, you won't have hyperpigmentation. ACTH is analogous to TSH, a signal from the pituitaty telling the adrenals to produce cortisol.

[RoseStar in reply to jade_s]

I’m so sorry I’m glad you have been diagnosed and I hope you’re feeling better than you were!! Maybe they haven’t jumped on mine because it’s obvious to them I’m not displaying the classic symptoms. I feel like I probably don’t have it but I’m frustrated I’m not well and no one is listening. I’m very irritable a lot of the time - probably through trying to cope with a toddler while feeling like death 6/7 days. I’ve also had multiple bowel movements a day and shaking on the Levo.

[jade_s in reply to RoseStar]

Well your result shows something's not right. You have only 25% of the cortisol a healthy person has. Symptoms are like a deck of cards, no one gets all of them. So they can't rule out something just because you are missing a few symptoms - the blood test is clear. I'd have to look up the actual figures but not everyone has hyperpigmentation. I never had the weight loss that everyone says you must have 🤷‍♀️

I can imagine you feel like death 😥 I felt like that too and i wasn't chasing around a toddler... and yes MUCH better now thank you.

I hope you can get a (male) relative/friend to go with you to your next appointment and not leave until they order a stim test. Desperate times call for desperate measures.

[WavingnotDrowing2023]

To start you off on 100mgms is very wrong. No wonder you feel bad. See another doctor.