High cortisol & thyroid

[Ezzie33]

Hi, has anyone had high cortisol levels (not Cushings though) which have lowered when you are treating your thyroid condition properly? Thanks!

[radd]

Ezzie33,

I don’t think you have received replies to previous posts because you have ME & your results are slightly ambiguous.

Your nutrients/iron are good and you are not medicating. October labs show TSH 2.2, FT4 just 16% through range, FT3 slightly better at 43.24%, with thyroid antibodies over-range meaning Hashimotos. With Hashi the downward demise can be long & insidious. TSH helps with thyroid hormone conversion so as it rises in line with dwindling thyroid hormones, it often results in more FT4 being converted to FT3 (active hormone) in an effort to retain well-being.

You have previously asked about medicating Levo but it would be unlikely conventional medicine will prescribe with those labs no matter how you are feeling. Also be aware you can not top up a low FT4 because as soon as thyroid hormone replacements meds are introduced thyroid signalling becomes altered within the HPT axis (hypothalamus, pituitary & thyroid). This means your body will sense this additional hormone presence & most likely reduce its own output. Therefore, medicating only small amounts of Levo, say 25mcg often results in lowering thyroid hormone levels more so than before medicating.

However, there is thought that keeping thyroid hormones optimal & TSH low prevents too much thyroid activity so quells antibody attacks and slows the progression of Hashi autoimmune disease. On your labs you would need to test regularly to ensure FT3 didn’t go over range but Levothyroxine is available to buy from abroad without a prescription and members will share their sources by private message if you asked in a new post. Be aware self-medicating will skew any further investigations by conventional medicine.

Another ‘however’ is regarding the ME. Thyroid hormones are low but thyroid antibodies aren’t that raised which considering your symptoms indicates the likelihood of other conditions/issues present. Therefore, correcting thyroid hormones may not be enough to alleviate symptoms, and could even prove counterproductive at this moment in time. Have you considered environmental factors such as pesticides, mercury, plastics, flame retardants, fluoride? - all known to alter thyroid physiology, and because these toxins do not effect the pituitary (which works slightly differently with thyroid deiodinase enzymes than the rest of the body), labs can be good when hypothyroidism is being severely felt on a cellular level.

Your gut absorption appears good but that doesn’t totally exclude the presence of possible infections? - H.Pylori, parasites, yeast and fungi, etc. Other autoimmune conditions? - such as Lupus known for fatigue, etc. Have you had any other autoimmune antibodies tested?

And lastly as your post refers to, cortisol issues. If there is no problem such as a tumour on the adrenals or pituitary, then cortisol issues can be linked to bodily/mental stress caused by thyroid/ME issues. Blood levels of cortisol should follow a circadian pattern which starts higher in the morning & taper off towards bedtime but become skewed/compromised through supporting other health conditions.

The classic symptoms of a sustained high cortisol level are blood sugar issues (insulin resistant, etc) & weight gain, a low immune system and high inflammation, etc as well as high anxiety and feelings of being overwhelmed. It will also be effecting opposing hormone DHEA and because these steroid hormones are neuro-active, meaning they will activate or inhibit neurotransmitter systems (& vice versa), its not just about the levels/usage but also our emotional wellbeing, etc.

Balanced cortisol is needed just as much as iron & nutrients to help make thyroid hormones work more effectively. Working towards balanced cortisol might include a healthy lifestyle/diet & sometimes supports such as large amounts of Vit C, additional salt or adaptogens. Have you done a saliva 24 hour stress test that informs not only of cortisol & DHEA levels but circadian patterns over a 24 hour period?

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[Ezzie33 in reply to radd]

Hi Radd, sorry for my slow response - have had a low(er) energy few days...

Thanks for your detailed and thoughtful reply. I know my thyroid values are fine really and if I sound desperate, it's because I am! My TSH has fluctuated a bit, but never higher than 3.5 on a medichecks test. I'm focused on thyroid at the moment because the antibodies have shown up in testing and I have a family history of it, plus a lot of the symptoms overlap with M.E. Thanks to a couple of members, I have source levothyroxine and have a couple of thyroid tests from medichecks already.

In response to your other suggestions (thank you!) I have done stool testing (fine), the mould, the chronic fatigue screen and methylation tests from Genova, and some other antibody testing including an ANA test (negative). Also put my DNA file from 23andme into SelfDecode to see if that would throw up any clues! My functional medicine practitioner I was seeing described me as a complex case!

I have done a couple of cortisol saliva tests - the first with Genova which showed elevated cortisol at each point, with a spike in the afternoon too, and in range but low DHEA, so my DHEA:cortisol ratio was low. If you had asked me at the time I would have guessed my cortisol was low, so that was a bit of a surprise! A subsequent test with medichecks showed my values had come down (after taking supplements & meditation for a year) but I still see the spike in the afternoon (it's about 9, I can dig out the exact values if you are interested). I have no explanation for the high afternoon spike. And in general, I have no explanation for why I feel so rubbish all the time. All I know is something is "off" with my body but no proper idea what or how to fix it. Very frustrating!

[radd in reply to Ezzie33]

Ezzie33,

Oh, that’s good you’ve eliminated a whole load of horrible possibles. Did you learn about any prohibiting SNP’s? A common one in people with ME are VDR impairments so require extra Vit D as adequate blood serum levels demonstrated by good labs simply aren't adequate.

What about sex hormones? Elevated oestrogen risks binding too much thyroid hormone making it inactive, and when we still have a thyroid gland too low progesterone decreases TPO activity which slows thyroid hormone production, thus lowering levels.

You have room for Levothyroxine because FT4 is so low. Your nutrients & iron are good. Have you had micronutrients tested? I found I was zinc deficient and supplementing both zinc & selenium was useful in making thyroid hormones work much more effectively. I also took large amounts of Vit C to support adrenals.

Have you got any blood sugar issues , ie hypoglycemia, insulin resistance, uncontrolled diabetes? They are notorious with adrenal gland issues. Datis Kharrazian explains the connection between blood glucose issues & the neurotransmitters (serotonin, dopamine, etc) that influences communication between the brain & thyroid gland, hence depression is usually coupled with low energy. But you have can also have neurotransmitter deficiencies through methylation issues with or without the low mood/depression.

He also explains how elevated cortisol can suppress pituitary function so TSH may never collaborate inline with thyroid hormones levels. Therefore, for this reason and many others, TSH become an unreliable marker of thyroid hormone levels. As Hashi is a progressive disease it is presumed thyroid hormones will continue to fall as the thyroid gland gets destroyed.

If you start Levothyroxine the usual protocol would be to start on 50mcg & test after 6 weeks . If adrenals aren’t strong I would recommend starting on 25mcg even at the risk of lessening own thyroid hormone production because it is essential not to speed metabolism too quickly and widen that gap between adrenal function & thyroid gland. Further raises can be in 25mcg increments every six weeks according to test results.

Other things that helped me make everything work better was milk thistle to improve liver function, and betaine HCL + pepsin to encourage better gut absorption & hormone conversion (but don’t take with stomach ulcers). I have also experimented supporting adrenals with several adaptogens but if you are starting Levo it's best not to change too much at once.

As you have ME I would really recommend Datis Kharrazian's books and also another great read for understanding Hashi is The Root Cause by Izabella Wentz.

[Lizzo30]

Magnesium is good for treating high cortisol

[Hidden in reply to Lizzo30]

Really ?!! So why don't the Endocrinologists suggest this? Do you have the references to show this please?

[Lizzo30 in reply to Hidden]

Idk - why dont you ask them ?

immh.org/article-source/201...

[Hidden in reply to Lizzo30]

The article was interesting & may help with some people to lower their cortisol if it is due to a phycological reason but it won't help if it's due to a pituitary or adrenal tumour, these would need investigated prior to trying magnesium. It can help with the aches & pains that come with very high cortisol levels.

[Hidden in reply to Hidden]

How many patients posting here have a pituitary problem or a tumour?

[Hidden in reply to Hidden]

Probably not many but there have been a few as this will be the place that they ask questions as Healthunlocked doesn't have a dedicated forum for people with pituitary or adrenal issues, which is why I am part of the group as well as being hypothyroid myself. Over the time I have been a member I have been able to help several who may have pituitary issues and/or a tumour & been able to direct them to the appropriate help.

[Hidden]

From what I´ve read about the thyroid-adrenal connection, adrenal fatigue (lowish cortisol levels) can sometimes improve with thyroid hormone supplementation, especially T3. This means that the adrenal glands are once again able to produce adequate amounts of cortisol. I have not heard of thyroid hormone actually lowering cortisol levels, and I don´t think that should be a reason to take thyroid hormone. It would seem that highish cortisol will increase T4 to rT3 conversion (instead of FT3 conversion), so taking levo could actually make things worse as you could end up with too little FT3. RT3 (reverse T3) is metabolically inactive as opposed to FT3 which is the truly active thyroid hormone responsible for all metabolic activity on cellular level. When on levothyroxine (T4), you want most of it to be converted to free T3, not rT3.

How long have you had high cortisol (sorry if this has been mentioned in previous posts)? Alternative practitioners often describe highigh cortisol throughout the day as stage 1 of adrenal fatigue. Stage 2 is a mixture of highs and lows. as the adrenal glands begin to produce cortisol more erraticly, and stage 3 is characterised by low cortisol levels throughout the day. It would depend on whether your increased cortisol production is caused by stress or actual disease. Adrenal fatigue is caused by stress (either psychological or physical, for instance untreated hypothyroidism).

[Hidden in reply to Hidden]

Sadly alternative practitioners are often talking a load of rubbish! True high cortisol levels are due to either long term steroid use, either a pituitary or adrenal tumour & is Cushing's syndrome & is a life threatening condition if not treated correctly. You can also have pseudo Cushing's which can be due to severe depression or alcoholism.

[Hidden in reply to Hidden]

Many of us with thyroid disease have had adrenal issues. I went from highish to low-high and eventually lowish cortisol levels after years of untreated Hashimoto´s. So I know from personal experience that adrenal fatigue - or whatever you call it - is real. The problem is that conventional medicine does not recognise it. The question is if alternative practitioners are right to treat with steroids, or if less invasive methods should be tried first? I don´t know the answer to that question, but I do know that hypothyroidism - especially if undiagnosed for years - can mess adrenal glands up. It makes sense if you consider that all endocrine glands interact. I don´t know what "true high cortisol levels" mean; all cortisol levels that are out of range are "true", aren´t they? Or does the term only refer to high cortisol levels caused by actual Cushing´s disease? By analogy, that would mean that only people with Addison´s disease can have "true low cortisol levels"?

[Hidden in reply to Hidden]

I don't think that alternative practitioners should be treating perceived low cortisol with steroids, especially without doing the tests to prove that it is low. Steroids are not the "magic" drug that people think they are, they come with significant risks so people shouldn't be prescribed them on a whim. Long term steroid use will shut down the adrenal glands completely so that the person is then dependent on them, this is a life threatening condition that needs monitoring which might not be done if the person is not under conventional medicine. People have died from going into adrenal crisis when they have either an illness or accident that uses up their cortisol, frequently when medics are not aware that they are prescribed steroids. Steroids can also impact bone health putting the patient at risk of osteoporosis, they may have fractures caused without a known injury. They also raise the risk of heart attacks, strokes & blood clots. it really is important that someone with low cortisol is tested to ascertain there is an issue, I'm not convinced that alternative practitioners would do that? Addison's is only one element of adrenal insufficiency there are other causes, such as removal of a tumour; long term steroid use, ACTH deficiency to name some. While I agree that thyroid meds need to be optimal to help cortisol & vice versa, I have had experience of Cushing's Disease & under the umbrella of the Pituitary Foundation run a support group for people with it, I now have secondary adrenal insufficiency as my pituitary gland does not produce ACTH so am steroid dependent. I wouldn't wish this on anyone, I have to carry an emergency injection kit with me at all times & take Hydrocortisone several times a day to try to maintain some sort of life, it's not easy & I struggle on multiple levels,plus I have hypothyroidism due to the pituitary tumour removal. It's why I am very cautious when an alternative practitioner prescribes steroids without doing comprehensive testing.

[Hidden in reply to Hidden]

Well, my father took prednisone for about 20 years for RA. He started out on quite high a dose (30-40 mg daily) and took that for the first couple of years, then gradually reduced it down to 5 mg daily where he stayed for over 15 years. When a new, once weekly injectable drug became available, he was switched to that. He just stopped pred one day and started on the new drug the next. He never suffered from withdrawal symptoms, and he has been off pred for almost 10 years without any signs of adrenal insufficiency. This is not to say steroids should be the first thing that thyroid patients resort to, only that not everyone who takes steroids long-term end up with Addison´s disease. I think that is over-simplifying it. And just how do you suggest that thyroid patients optimise cortisol levels? As I understand your previous posts, you are also against the use of glandulars/ACE.

[Hidden in reply to Hidden]

Your father was extremely lucky, others haven't been so lucky. Addison's disease is only one aspect of adrenal insufficiency, someone with adrenal insufficiency from long term steroid use would be classed as having secondary adrenal insufficiency not Addison's. Endocrinologists were so concerned about the lack of understanding of steroidal use, a national Patient Alert for

safety around the use of steroids was published last year, they wanted to highlight that many patients on steroids could have an adrenal crisis & possibly die because the risk of long term steroid use had not been recognised by their medics, you might like to read it? rcpjournals.org/content/cli...

If someone feels that they are having issues with their cortisol levels needs to be tested to establish this either via their GP or Endocrinologist, if this is established it's then a case of getting their thyroid meds & if on Hydrocortisone adjusted to get both at an optimal level this can take time.

[Hidden in reply to Hidden]

I find this article by Dr. Durrant-Peatfield very enlightening:tpauk.com/main/article/how-...

I have found countless stories by patients who say he saved their lives after conventional doctors kept them suffering for years.

[greygoose in reply to Hidden]

especially without doing the tests to prove that it is low.

Who said they don't do the tests before prescribing??? Why would you think they do that?

I'm not convinced that alternative practitioners would do that?

Have you actually had any experience with alternative practitioners?

'Alternative' covers a vast spectrum of practitioners. And, whilst I would wholeheartedly agree that a lot of them are charlatans and dangerous, not all of them are, and I don't think they should all be lumped under the same heading of 'alternative'.

I was prescribed HydroCortisone by a so-called 'alternative' doctor, after testing - something my 'conventional' doctors hadn't never thought about. What's more, when I told these 'conventional' doctors that my cortisol was so low it wasn't surprising that I wasn't getting any better on thyroid hormone replacement, they just scoffed and blustered. They just knew nothing about adrenals and cortisol, so thank god for my 'alternative' practitioner.

So, this AP explained to me that it wasn't the length of time you took the HC that caused your adrenals to shut down permenantly, it was how you took it. If you took it spread out over 24 hours, to mimic the cortisol production of the adrenals, then they would shut down because they had nothing left to do. Like the thyroid when you take thyroid hormone replacement. But, unlike the thyroid, when the adrenals shut down, they do not start working again. So, if just treating Adrenal Fatigue - and yes, I do believe that exists - the name may be misleading, but the condition exists - so, when treating Adrenal Fatigue, as opposed to Adrenal Insufficiency, you should only take HC in the morning, to give them a helping hand when they need to work hardest, and let them work for themselves the rest of the day.

I was on HC for two years. I had no trouble coming off it, and now my adrenals work very well.

People have died from going into adrenal crisis when they have either an illness or accident that uses up their cortisol, frequently when medics are not aware that they are prescribed steroids.

Well, that's pretty obvious, isn't it? And could be said for an awful lot of other medications - same for people on T3 only. Which is why people wear braclets giving that sort of information, or have some sort of card in their wallets or handbags. That is not special for steroids. Someone should always know what your taking. That is not a reason for not taking steroids.

[Alanna012 in reply to greygoose]

I was on HC for two years. I had no trouble coming off it, and now my adrenals work very well.

I've heard other personal stories where people have said after taking hydrocortisone for a few years and stopping, their adrenals seem to work normally again.

But why would this be I wonder? Is it more about adrenals needing to re-establish a rhythm? Like the cogs in a clock all working together so the hammer strikes on the hour?

It's interesting. I would think they would crash. Not fail, but drop in performance again.

Lots to learn!

[greygoose in reply to Alanna012]

Well, I think the clue is probably in the name: Adrenal Fatigue. They just need a rest after having taken up the slack from a failing thyroid possibly for many years. But, I don't really know. I just know it works.

[Alanna012 in reply to greygoose]

That does make a lot of sense. They need a break and then after a rest can pick up the slack again. Quite reasonable deduction to make!

[Hidden in reply to Alanna012]

I totally agree with greygoose . The problem is adrenal fatigue is not a recognised condition so most doctors won´t treat it or even diagnose it. There are two schools of thought; some alternative practitioners believe that once your FT3 levels are optimal, the adrenal glands will sort themselves out, while others will treat the adrenal glands first. I guess it also depends on how long you have had the condition and how hypothyroid (T3 deprived) you´ve been. It´s possible that mild cases of adrenal fatigue will sort themselves out once on optimal doses of T3, whereas more severe cases will require treatment before thyroid hormone replacement works properly.

[Alanna012 in reply to Hidden]

Thanks for explaining it well.

[radd in reply to Hidden]

PaulineS,

"Sadly alternative practitioners are often talking a load of rubbish! True high cortisol levels are due to either long term steroid use, either a pituitary or adrenal tumour & is Cushing's syndrome & is a life threatening condition if not treated correctly. You can also have pseudo Cushing's which can be due to severe depression or alcoholism."

You had a tumour which I am sorry to hear about but considering you are on a thyroid forum you are incredibly short sighted in not recognising there are other causes and levels of adrenal dysfunction.

The elevated cortisol that supports our thyroid insufficiencies eventually become low and the names we call this that you sneer at: ‘tired adrenals/adrenal fatigue/HPA axis disfunction/etc’ exist because the condition has no official name remaining unrecognised within conventional medicine. But this doesn't mean it doesn't exist!

It exists in the form of remaining just outside parameters of an Addisons/Cushings diagnosis, and then will nurture anxiety, blood sugar control problems, weight gains/loss, immune system issues, gut infections, cardiac issues, the list is endless and then to cap it all thyroid hormone meds not working effectively because we all need adequate & balanced cortisol levels to function well.

"I don't think that alternative practitioners should be treating perceived low cortisol with steroids, especially without doing the tests to prove that it is low."

In the context of fatigue luckily adrenals are robust given the right supports, and steroids aren't always required and can't be prescribed by alternative practitioners anyway!!

So thank goodness for the glandulars and adaptogens they can offer, & the likes of dear old Dr Peatfield's knowledge of steroid treatment in respect of dosage/circadian patterns that encouraged 'best' adrenal recovery and ongoing function. An understanding that will never be emulated by conventional medicine unless they look further than their endo guide book.

[Hidden in reply to radd]

Well said, but it depends on how you define alternative practitioners. I use that term for medical doctors who have an unconventional approach and therefore use alternative methods. In that case, they can prescribe steroids if needed. But I guess it´s also possible to interpret "alternative practitioner" as mening naturopath, natural doctor, or herbalist, for instance.Thank you for taking the time to react to the steroid and adrenal fatigue discussion and for saying things that needed to be said!

[Alanna012 in reply to Hidden]

Yes, the first doctor I ever saw was an ex NHS GP who wholly embraced non-conventional medicine and naturopathic practice. I guess he was a hybrid 'alternative practicioner'

[Ezzie33 in reply to Hidden]

Hi PurpleCat (typing this with my cat nuzzling my hand so apologies for typos - it's his fault!), thanks for your reply! I first learned I had high cortisol about 3 years ago, and have tested once again since then where my values had decreased but I still saw a high spike in the afternoon. I just tested again but the results seem messed up.

I was asking about the link between cortisol and thyroid as I'd seen articles but brain fog means they're a bit hard for me to understand, so I was hoping a quick question on here might help I think from my thyroid test results, my FT4 to FT3 conversion is ok. Am just trying to understand what's wrong with my body!

[Hidden]

Do you have the results for your high cortisol?

[Localhero]

Hi Ezzie33

Did you manage to source some Levothyroxine privately? Have you been taking any? If so how much? And have you done any more blood tests at all?

Also, have you done an adrenal test? If so, what did it say? If not, as radd suggests, it would be well worth doing to pin point the issues.

After I began thyroid treatment, I read that, if there are underlying adrenal issues, they should be addressed before commencing treatment. I wish I’d known that as I think starting to take thyroid hormones just exposed my adrenal issues. Still, two plus years on, I’ve spent the last few months trying to address them (and gut issues, but I won’t bore you with that). I think I’ve made some headway by using a variety of supplements, managing my blood sugar levels, by keeping consistent sleep/wake times, and doing meditation religiously every day. It’s not a quick fix and does take work. But, no, in my case, being on thyroid medication did not fix my problem.

[Ezzie33 in reply to Localhero]

Hi Localhero,

Thanks for your reply! I have sourced some levo thanks, but not started taking it yet. I have done a couple of cortisol saliva tests now, the first (about 3 years ago) which showed above range values at all times, including a spike in the afternoon, and the second showed an improvement in the values but still a spike in the afternoon. I can dig out exact values if that doesn't make sense! I just did another test but the results were messed up so not got a current measurement.

Sorry to hear you have multiple issues too! Such a puzzle isn't it?! I was managing my M.E. at a mild stage but had a major crash last year and it seems my new baseline is now around the moderate M.E. level. I'm trying to find something that will help me get back at least to my previous baseline!

[Localhero in reply to Ezzie33]

It’s SUCH a puzzle. But not impossible! I would honestly suggest that you do a current adrenal saliva test and post the results here. Maybe on a new post. Feel free to nudge me, if you want.

In case its helpful, I’ve been taking a mixture of supplements for adrenals (adaptogens, electrolytes, l-carnitine and S, boullardi), paying attention to keeping blood sugar balanced, and meditating. I do feel somewhat better but I’m only six weeks in. (I’ve also been gluten free for a while now.)

Dr Isabella Wentz is good on this stuff and you might want to check her out if you haven’t already.

In any case, if you do some work on adrenals, you might get some strong foundations if you do end up starting to take Levothyroxine.