Out of ideas: I've been dealing with high... - Thyroid UK

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Out of ideas

Violette profile image
10 Replies

I've been dealing with high cortisol for the several years (possibly more) and cannot seem to get it under control any means. My last salivary cortisol is the highest it's ever been (will list figures below) and my sleep is now seriously impaired.

I'm sick of being told it's "stress", I'm unable to do much aside from sit in bed precisely because of how terrible I feel, if I my cortisol is rocketing from doing nothing at all surely something is wrong??

I rest, take ashwanghanda, tulsi, valerian, avoid stimulants etc. It's still not coming down. I've had very low cortisol previously and assumed eventually high cort would result in a crash eventually, that this sort of high in unsustainable? How is it still going???

The brain mri came up clear, my dexamethasone test also came back normal but my saliva results are still coming back elevated at all points. The endo insisted I didn't have cushings based on appearance alone and had no other suggestions post testing. I'm starting to think of other possibilities like adrenal tumor or that it's something testing so far failed to pickup (perhaps I need another brain mri) Any ideas?

Morning range: 42.22 (7.45-32.56)

Afternoon: 15.33 (2.76-11.31)

Evening: 7.6 (1.38-7.45)

Midnight: 7.52 (0.83-3.86)

*I have thyroid issues too (hypo) and think the meds failure to fully alleviate my symptoms is due at least in part to these adrenal problems.

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Violette profile image
Violette
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humanbean profile image
humanbean

How much of your various supplements do you take? And what brands?

I drank generous quantities of Tulsi tea, but in the end it did nothing for me.

Then I started taking a Holy Basil supplement rather than drinking the tea. (Holy Basil and Tulsi are two names for the same thing.)

I'm taking this product : swansonvitamins.com/swanson...

It's easily sourced on various shopping and supplement websites.

The dose on the bottle says to take 2 capsules twice a day i.e. 4 capsules in total. I actually took a maximum of 8 capsules, but rapidly dropped back to 6. I stayed on 6 for a few months but have dropped back to 4 in the last few days. I'm hoping to drop to none eventually.

Since going on the Holy Basil supplements I have been able to raise my T3 dose to something far closer to my ideal dose than I could cope with before. However, I know that it does nothing for some people.

***

I've never got on with ashwaghanda. It makes me feel sick. Valerian gives me a headache. I don't know a working dose of either of them in terms of lowering cortisol, so can't help with those.

***

Some things you could try :

Phosphorylated Serine - sold under the brand name of Seriphos but be sure to buy only the Original Formula (if you buy it at all).

Phosphatidyl Serine - more expensive than Seriphos but does a similar job

***

Some links :

interplexus.com/data-sheets...

moodcure.com/correcting_cor...

moodcure.com/pdfs/Townsend-...

stopthethyroidmadness.com/ps/

Also do some searches on this forum.

***

Cortisol and adrenaline are produced by the body when thyroid hormones are too low - they are the body's substitutes, but they aren't really very good substitutes for thyroid hormones. In an ideal world cortisol and adrenaline may lower with sufficient thyroid hormones, but often it doesn't. So then cortisol has to be lowered with supplements, and then the thyroid hormones have to be raised once cortisol is lowered.

If you have any up-to-date thyroid results they might be helpful.

elaine2447 profile image
elaine2447 in reply to humanbean

Thanks for the various links they are really helpful. Seriphos I had never heard of. Your link for holy basil is in dollars but I am confused as when I googled amazon and health monthly it seems there are two Swanson brands which look almost identical but twice the price as one is for 60 capsules and the other 120, there must be different strengths or extracts?. I did find this one though which states gluten free amazon.co.uk/Association-Ce...

humanbean profile image
humanbean in reply to elaine2447

I use Healthmonthly to buy Holy Basil - this link at £5.22 :

healthmonthly.co.uk/swanson...

Sadly, it doesn't say it is gluten-free.

Although the amazon link you've chosen sounds wonderful, given the amount I take, it is simply too expensive for me at £18.88 per bottle.

elaine2447 profile image
elaine2447 in reply to humanbean

Thanks, probably best to start with the cheaper version as I am sure if one is going to react to the product it would be the same with the dearer version.

mandy72 profile image
mandy72

my cortisol was very high 6 months ago i was taking 12 holy basil 12 jujube and 12 relora (relora and jujube need to be taken together to work) 4 times a day

i dropped dose as money was getting tight and i was using stupid amounts daily

im off them all now, feeling lousy but need thyroid sorting too and im hoping to retest very soon

im on mirtazapine for severe depression and anxiety but going to try weaning off as the weight gain is terrible, the only good thing with the mirtazapine is i sleep

elaine2447 profile image
elaine2447 in reply to mandy72

You poor thing, you must have almost been rattling with that many pills! It can be so costly, I have got bottles and bottles of stuff, I start taking and after a couple of days I start to feel nauseous and then go into panic wondering whether it's the dreaded 3 months saga or the pills or something I have eaten, so stop taking them. Was the same with ubiquitol, l-glutamine and recently some quite expensive digestive enzymes. I mean how can the latter make one feel sick and bloated but they seemed to. See if you can get the mirtazapine tapered down gradually as I know from one of the mirtazapine forums they are hell to get off whatever any gp or psychiatrist might say. I was lucky really, just got it down to a quarter about 3.75 and then alternate nights and I thought I was okay for a few months but then all these other horrible Hashi symptoms kicked in. I am a bag of nerves anyway, as I also have severe osteoporosis and can't take calcium supplements due to high blood calcium (primary hyperparathyroidism, another horrible disease that is ignored in this country!!). Good luck.

elaine2447 profile image
elaine2447

Oh Violette I haven't been tested but I think I am in the same boat as you. I need to do a saliva test but first I had sent away for a blood test which I messed up and due to do another maybe tomorrow. It's a nightmare or I should say like living in a nightmare with the anxiety attacks this causes. I am trying ashwaghanda just one organic one a day and so far although made no difference to my anxiety hasn't made me feel sick as most supplements do. I might give Holy Basil a go. I hope you get something to alleviate the symptoms. If you want to go down the anti depressant route I found out the following information:

Mandy 72 Funny you should mention mirtazapine. I was put on that although I wasn't depressed but I had three months of racing heart, nausea, slight trembling and insomnia and could only get off to sleep with the help of a Xanax for a hour or so and then the racing heart would wake me every morning at 3.00 a.m. GP's and endo (for primary hyperparathyroidism were useless). I was put on mirtazapine but I kept saying I'm not depressed and I feel this drug is masking something else but they have tunnel vision and I had to be depressed!!. However, the symptoms did die down but I put on the two stone I lost and more and I cannot shift it. A few months later I had a second ultrasound and the guy said the inflammation he was sure was Graves but that got ignored! Anyway, I managed to taper off the mirtazapine as I wasn't happy that it said one of the side effects could be bone marrow depression and as I have severe osteoporosis I wasn't keen as you can imagine. I did find by September of last year that I had Hashimotos they say due to the thousand or so peroxidase antibodies but how does one distinguish between that and Graves with a blood test?

I went gluten free in November and I was sort of getting on okay until fairly recently, when I went to see a functional medicine practitioner who prescribed a very low dose of NDT. By day five I was going up the wall with even more mania type feelings. I dug out an old mirtazapine of 15mg and took it one night, the next morning all the horrible symptoms had gone even when taking a 1/4 grain of NDT. I thought this is odd. I started googling and found that an old study was done with healthy people giving them mirtazapine and was found this is the only anti depressant that can suppress cortisol. I can only find this study now but will look again as the forum I took it from mentioned a 30% suppression ncbi.nlm.nih.gov/pubmed/125...

ukred profile image
ukred in reply to elaine2447

Can I ask how long it took you to get off Mirtazapine and how you did it please?

elaine2447 profile image
elaine2447 in reply to ukred

Just a few weeks and I cut them down to 7.5mg

elaine2447 profile image
elaine2447 in reply to ukred

Gosh I hadn't realised that was from 4 years ago. So much has happened I had a parathyroid ectomy in March of last year which I had to pay for. I've since had an accident and crushed my index finger . I still pop the occasional 7.5mg as I don't sleep very well and with mirtazapine 7.5 it's been found is better than 15mg so less is more!

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