High free cortisol with low serum Cortisol issue

[Mollyandbear]

Hi all, recently joined the group and this is my first post.

I’ve read a few bio’s and posts and can see there are some super knowledgeable and very helpful people on this forum. Perhaps there is someone out there who can add another piece to my puzzle. 🙏

Brief History:

diagnosed Hypo in 2015. Had all usual symptoms, weight gain, cold, poor skin etc… TSH >100

Treated by Gp with 125 mcg T4 - felt decent for five years

2020 - long Covid and bad viral infection resulted in some mild CFS and physical body breakdown. After several years of gradually repairing my body, was left with three/four symptoms. Burning cold, bit of angina, very poor hand skin , lactic acid in legs and fatigue.

Started running full thyroid panels privately with Genova and working with an expert/author in Thyroid dysfunction and treatment.

Labs showed poor conversion t4-t3. High FT4, low FT3 and RT3 to the upper part of range.

Reduced T4 to 50 mcg and started titrating t3. Until recently, was steady on 60 mcg t3 per day split into three equal doses of 20 mcg.

Recall feeling quite well during the middle of the year on this dosage (apart from daily headaches) with both signs and symptoms steady.

I started feeling off again a few of months back. Bouts of body fatigue, low mood and general feeling of malaise and unwell.

Did MRI in October because of headaches and found an empty sella. I therefore did some further pituitary testing to ensure the gland was still working well. The majority of the hormones I tested were either slightly above or within range, so the gland is still working fine, but my serum cortisol was very low. Not Addisons low, but in the low part of the range. I therefore rechecked my saliva/free cortisol and it was way above the range first thing in the morning.

The thinking now with high free cortisol and low serum cortisol is that I may still be hypothyroid, as the sluggish liver is not metabolising properly. I’m no expert but I’m aware that the link between adrenals and thyroid is complicated and very important that cortisol nuclei levels are high enough to support cellular t3.

The suggestion is that I start titrating up the T3 from current dose of 60 mcg because I may very well be still hypothyroid. But like all these things, it’s a leap in the dark.

There is more to the story and I’m seeing an endo chap now who has just run a few more tests/hormones (awaiting results) but I would be very interested to hear from anyone, especially with adrenal knowledge and t3 use.

The Endo is re-running morning serum Cortisol, D3, Ferritin, b12 and Folate, Iron, urea and electrolytes.

Sorry if the detail is a bit sparse, but didn’t want to write an essay and anyone who does take the time to read this, Thankyou very much.

[humanbean]

The Endo is re-running morning serum Cortisol, D3, Ferritin, b12 and Folate, Iron, urea and electrolytes.

Do you have any recent (last 6 - 9 months) results for any vitamins and minerals? It would be helpful if you posted them along with their ranges.

One of the things that commonly happens when people are hypothyroid is that any moisture producing parts of the body start to dry up. So people end up with one or more of the following :

dry skin, dry mouth, low stomach acid, dry eyes.

The low stomach acid is particularly troublesome for many of us. We end up with indigestion, heartburn, and poor digestion generally. This leads to poor food breakdown in the gut and so nutrient extraction from our food tends to be poor too. This leads to low levels of various nutrients. Low nutrients leads to symptoms that are associated with hypothyroidism but which might be avoided with supplementation and/or improvements in the diet and/or optimising of T4 and T3 intake.

[Mollyandbear in reply to humanbean]

Thankyou.

Unfortunately I haven’t tested vitamin and mineral status in last 12 months.

[SlowDragon Administrator in reply to Mollyandbear]

What vitamin supplements are you taking?

Good endo is retesting vitamin levels

Reduced T4 to 50 mcg and started titrating t3. Until recently, was steady on 60 mcg t3 per day split into three equal doses of 20 mcg.

That’s a large reduction in Levo

What were most recent results on this dose ?

Many members find they do best with BOTH Ft4 and Ft3 roughly 60-70% through range

Do you always get same brand Levo and T3 at each prescription

Is your hypothyroidism autoimmune?

[Mollyandbear in reply to Mollyandbear]

Hi and Thankyou.

I only really take chelated magnesium 300 mg early evening and occasionally a multi vitamin and a probiotic. I add a salt to most meals that has a long list of minerals and some vitamins ( sunshine salt/ s myhill)

Have tried to attach the latest labs from Genova via thyroid uk

My T4 is on the floor because of the t3 and way out of range. I know it’s so personal and individual, but there are obviously some people who do well on just t3, so their t4 would equally be non existent. I just don’t think I was converting it well.

Always use same t4 from gp and Thybon Henning t3 from Roseway

Yes, hashimotos. Probably not a lot of thyroid function left after over five years of attack.

Thanks

Lab screenshot

[TiggerMe Ambassador in reply to Mollyandbear]

I shall tag in SlowDragon as you replied to yourself she won't be alerted

[Mollyandbear in reply to TiggerMe]

Ah, many thanks

[AKatieD]

Yes, I am working through the same low blood cortisol ( total) and off scale high saliva ( free). I came to look at it as I felt awful with an extreme energy crash and panic.

I too read the stuff about must be still hypothyroid and need more T3. But as I was already on a stonking dose of T3 only ( 125mcg) and my T3 was highish in the range it did not seem that likely that I would need more. I also had very low DHEA levels and I am taking HRT to confuse matters.

TiggerMe was very helpful and suggested taking DHEA. Started in the spring/ early summer and was taking 25mcg, after a while adding pregnenolone 50mcg too ( both being precursor hormones that are part of the chain producing sex hormones and help balance cortisol levels).

My DHEA levels have raised and very curiously free T3 went over the range. Last month my saliva test finally showed low cortisol levels and so I though to reduce DHEA. I have reduced T3 to 75mcg (was still over range when tested so tried 50mcg but felt awful so had to raise again).

Also trying a bit if T4 to see if that makes a difference but can only feel the effect of lowering T3 so not sure if worth continuing?

Not got that balance right yet as still feel (lot less) tire easily and not quite sure where to go from here. I am going to test sex hormones next and see what has happened there as maybe messed them up.

Definitely a long and slow path but hopefully going in right direction!

Best of luck 😀

[Mollyandbear in reply to AKatieD]

Thanks for the response. Back in work today, but will digest and reply later. Thanks

[Mollyandbear in reply to AKatieD]

Yeah, it’s a minefield and a bit scary, I just don’t know enough yet about all the hormone relationship’s. ( maybe never will) Presumably you’re t3 dosing and testing timing is consistent, so why would your t3 serum jump with an increasing DHEA?

My DHEA was high (above range), with elevated free cortisol, so bit different to your results.

Maybe a silly question, but how important is it to be in range for t3 when dosing with t3? It’s So individual. I know someone who is on 60 mcg t3, feels good consistently and says his t3 is way over the range when testing. I was also on 60 mcg and mid range and feeling wiped out. But I am also on 50mcg t4, so maybe not a fair comparison.

I wish you the best and Thankyou for your post

[AKatieD]

Yes, all the main hormones that cause problems seem to affect each other, mine do anyway!

As I understand it, cortisol and thyroid hormones interact in particular. High cortisol means you need more T3 for the same effect than if you had low cortisol. So replacing the DHEA has reduced the free cortisol and reducing the cortisol has reduced the amount of T3 needed.

In your case, you don't need more DHEA so will need a different approach to reducing high cortisol, which can cause lots of symptoms by itself. Then maybe you won't need quite so much T3 and test results will reduce.

I would not worry too much about the T3 result being a bit high if you were feeling well, as we should treat signs and symptoms not lab results, but you aren't feeling well.

Perhaps your Endo can help you bring down the cortisol (I don't have one)?

I would also play close attention to b12, folate, iron etc when you get the test results back as those may cause some of the symptoms you mention ( like headaches and b12) and doctors often ignore anything that even scrapes the bottom of a range.