After my previous post where I'd removed everything, I have now introduced Hydrocortisone (HC) and steadily worked my way up to 17.5mg daily broken down as: 7.5mg on waking, 5mg noon, 2.5mg 4pm, 2.5mg bedtime. I tried to introduce the HC as a full dose, 25mg, as per STTM but it sent me NUTS, so I've had to titrate up. I also tried to keep my dosing all before noon but I was experiencing hypoglycaemia when the HC wore off, so I have decided to take a steady dose throughout the day.
As my circulating thyroid hormone levels are now low I have had no uptake symptoms clouding the picture. I had my blood drawn, my thyroid results on nothing are (and will likely continue to get worse):
🎈 Most significantly my period returned after 3 days of HC, since going MIA in February (in spite of being on NDT medication back then)
🎈 No longer hypoglycaemic, this is a little double-edged sword because having struggled with hypoglycaemia since I was 7 years old, my blood glucose levels are now too high! Average used to be 4.3, now around 7.8. In spite of introducing Chromium, Black Seed Oil & Ovasitol I have yet to see much of a drop in it. Steroids are known for increasing blood glucose - it is a large part of the role of cortisol - but I would obviously need to avoid it going too high. I hope my insulin sensitivity will normalise once my thyroid medications are optimised.
🎈 Blood Pressure rising to normal 105/64 to 117/75
🎈 Resting heart rate normalising from 86 to 65 (I have a previous diagnosis of POTs/Dysautonomia, which I now believe is likely adrenally related as my POTs symptoms have reduced dramatically on the HC)
🎈 Heart Rate Variability from 27 to 49 with sporadic spikes of 150+ directly after my HC dose
🎈 Basal Body Temperature went up to 36.79 before HC, and off Thyroid medication (this could be low aldosterone or/and high adrenaline), this has now normalised to a pretty hypo 36.19 this morning.
🎈 Weight is fluctuating but averaging the same, which is the best I could have hoped for on steroids and no thyroid medication
Symptom improvements from commencing HC:
- Dissociative symptoms: +30%
- Anxiety: +30%
- Motivation: + 25%
- Tinnitus: Same
- Bowels: -20% (HC is not kind to the tummy)
- Sleeping through without panic attacks/sudden waking - I dealt with this every single night on NDT, so this is hugely significant that it's stopped.
I'm now adding 1/2 grain of NDT. I will continue to raise & assess HC, then I will decide whether I need Fludrocortisone for Aldosterone. If there is one thing I have learned so far on this journey it is that you 🔊IGNORE 🔊CORTISOL 🔊AT 🔊YOUR 🔊PERIL 🔊
Notes on Glucose & Cortisol: Hydrocortisone/Cortisol raises glucose levels inside the cell, which is essential for mitochondria to work. Here is a quote from Paul Robinson's chapter on Adrenals:
"Some symptoms of hypothyroidism may be confused with some of the symptoms of low cortisol, since both can lower metabolic rate... Low cortisol may interfere with the conversion of T4 to T3, and result in lower FT3 and elevated rT3. Low cortisol also reduces T3-effect in the cells. When cortisol is low, blood sugar may also be low. Inefficient blood sugar will slow down the mitochondria - thus slowing down metabolism."
🙏 thank you… so far I am pleased I have done it! Especially pleased to have my period back, think that’s a great sign my body is appreciating the HC. HC has mild aldosterone affects, so will probably only make things a little better on the aldosterone front, but my renin is high so I have a feeling I’ll ultimately need Fludro 😫 at this stage I just think I’m all in now tho… may as well load me up on the steroids xx
Gosh yes I forget you're a young'un and still welcome periods 😬 it sounds like you have made some great headway and things are playing out much as your research suggested which is reassuring, isn't adding in a little steroids rather like adding HRT or thyroid hormones by putting back the missing bits to balance things up?
yes ideally have at least a decade of periods ahead 🙂 yes exactly, I clearly need the HC, prolonged hypothyroidism can tax the adrenals so badly they don’t function properly anymore - I’ve been under treated for 18 years 😫 got a lot of healing to do. But yes I am all in favour of replacing what we don’t make! How is your HC journey going? X
So far so good 🤗 I'm gradually able to do more without getting completely wiped out.... I'm sticking with 5mcg as the suggestion is that 10mcg doesn't result in any real gain (drmyhill.co.uk/wiki/Hydroco.... )
BP up slightly which is good
E.g. after reading Radd's post yesterday about mould I actually got on and tackled the silicone in the shower room that has been bugging me for months then after removing all that I still had enough umph to do a bad job washing the windows and a bit of gardening and a long solitary nature ramble to celebrate😀 and an evening bimble with the dogs
Rubbish that improvement is gauged on cleaning achievements but when I actually feel inspired enough to do some its a good sign 🙏
Just had a broken night with my small furry friend insisting on 3 trips to the garden to look at the lovely 🍓 moon 🙃
I'm just going to keep it at this level and give it time, lots of time... it's only been 5 days so far nothing dramatic but a gentle uplift?... and keep monitoring everything 🙂
I've got 6 months worth so will give it 8 weeks and check thyroid levels, 3 months and re-do saliva cortisol also have a SS test coming at some point...
That sounds positive! I’m going to switch to HK supply, thank you for being Guinea pig! Thanks for link to S Myhill’s site, I’ve been enjoying reading her stuff.
😂 that is so good of you to get up for moon trips! We are going to have to face the ✂️ for Pip soon… I did ask the vet about HRT 😂 as I don’t want my pups getting fat and depressed! She said they just have to deal with it ☹️
Glad you are able to see results, fingers crossed 🤞 your NDT intro goes smoothly. Well done for recording change so we’ll, love
The % improvements ⭐️
I have a question, the side effects for Fludrocortisone (and Hydrocortisone for that matter) read like a shopping list of unpleasant symptoms, I get that it’s all relative but is there a way to get to a point you can stop with those or are they long term treatments?
Risk of Cushing’s is in my thoughts… DiL’s friend just diagnosed, so fresh in our minds.
Sending you love hugs, restful sleep makes such a difference, go you 💕
Thanks Regen 🙂 I have everything crossed that progress continues, I couldn’t have hoped for a better response to the HC, a sure sign I needed it!
Fludrocortisone has a slightly different side effect profile to HC, because it is a mineralocorticoid its greatest impacts are on minerals/electrolyte balance. Most notably it can tank potassium because the role of aldosterone is to maintain some sense of equilibrium between sodium and potassium, this is why when assessing aldosterone the ratio of sodium:potassium is so important.
HC is a glucocorticoid, affecting macronutrient (fat, protein, carb) metabolism, the side effects of this long term can be anything from osteoporosis to steroid-induced diabetes. A serious concern is suppressing the axis for good, essentially telling your pituitary never to make anymore signal for the adrenals again and being stuck on steroids for life - it’s a risk, but not one I’ve seen in people like me whose original need for HC comes from chronic hypothyroidism as opposed to autoimmune destruction of the adrenals (addison’s). Cushings is unlikely to occur from taking HC if taken appropriately. That is a bit like saying taking thyroid hormone can make you hyperthyroid - it can raise your cortisol levels very high if you take too much steroid, yes, but ideally you wouldn’t, most argue that anything below 30mg taken for less than 2 years shouldn’t result in permanent suppression. Your DiL’s friend will possibly have a tumor/pituitary dysfunction if they have cushings, or they are simply overdoing their steroids if they’re on them and need to reduce them 🙏
BTW - Both aldosterone and cortisol are made in the outer cortices of the adrenal glands, that’s why they are often both dysfunctional together.
I forgot to add - ideally once optimal I will wean off the HC, so those long term effects ought not to be too much of an issue for me. However, on balance I’d prefer a shortened, osteoporotic life of joy even if I were to be stuck on them 🤸♀️
Thanks Radd 🙂 yes, it’s definitely a concern that I keep rolling around my mind. I’m hoping to use the steroids to prop me up while I optimise everything, get that T3 to the nuclei and then remove them slowly at some not too distant stage… 🤞🤞
thanks so much for taking the time to explain, have now understood parallels with my dear old Nanna’s (RIP) and MH and metabolically challenged Aunt. One to discuss with my cousin.
DiL friend has no history of steroid use, hospital say birth control likely (she is only 21) and having MRI for pituitary and kidney/adrenals.
So glad you are taking care and see the risks/rewards. Wishing you every success 🌱
thanks Regen ❤️ yes - I dread to think how many of the older generation suffered in silence, with no idea it was their thyroid… we have goiters coming down both sides of my family (all women ofc). I hope your DiL’s friend can get some resolution, chronically high cortisol cannot be fun at all ☹️ and birth control… that’s a whole new can of worms! Will let you know how things are progressing 🙂 thanks for your support xx
I’ve been reading your some of your updates. When it comes to the human body trial and error with a healthy dose of educated guesswork and speed of decision making is everything.
I can’t help but wonder as the world evolves (how much antibiotics and hormones our we putting into our food chain these days?), so does the human body and responses to treatment. Therefore we should not assume previous knowledge as eternally correct.
Elsewhere in other posts you mention that you do not wish to come across as a know it all. You definitely do not sound like a know it all. You sound like you know you and that’s plenty good enough.
So very well done! Taking risks is no easy business but where would we be without it?! Thank you so much for sharing and giving me a glimmer of hope.
Yes, I totally agree with you. In today’s world we are really dealing with so many toxic variables we didn’t have even 5 years ago… the unknowables are overwhelming.
I am so pleased I don’t sound like a know it all. I think what I really want, aside from valuable feedback from those who know more than me on the forum and the kind support of others, is for someone in a few years to come across these posts and realise that they are not doomed. And I am so happy to be able to give you hope, because believe me I am climbing up from the bottom of the barrel. 18 years severely unwell, I’ve been on lithium, anti-psychotics, all the anti depressants, I’ve got about 12 diagnoses. When I fully understood how profound and widespread the effect of thyroid hormone is, I realized that I don’t have to live a suboptimal life bedbound on psych drugs. If you read the stuff, it will start to make sense. I am nowhere near well, but I am making headway and I really believe that if I can get better then most people can. Don’t give up xx
“18 years severely unwell, I’ve been on lithium, anti-psychotics, all the anti depressants, I’ve got about 12 diagnoses”.
We have been on very similar journeys. I’ve avoided too many diagnoses as I had good reason to become more and more suspicious of their accuracy over time. I am thankfully ‘mostly’ psychotropic medication free through my own violation (incredibly risky but worth it) and since being newly diagnosed of Hypothyroidism (Hashimoto) some of the trajectory of my life makes more sense and my suspicion over my mental health diagnoses as meaningless, useless and harmful confirmed.
I often need glimmer of hopes to get me through the day. Such is the business of life sometimes isn’t it? Today is good ish day (you know the type where we have learned to live with our limitations?) as I typed being wrapped up in an electric blanket while it’s 20c and sunny outside.
Yes, I am looking forward to buying a stand alone freezer to start purchasing organic meats directly from reputable farms to further improve on diet and hopefully influence on thyroid. I am willing to bet food manufacturing and environmental damages are the missing link of many conditions these days.
yes, I’m the same… once I realized that all these doctors had for me were labels and diagnoses with no answers, I stopped getting investigated because what’s the point? My current understanding is that it all comes back to the same place… metabolic dysfunction. If you don’t have enough thyroid hormone and if that thyroid hormone isn’t being metabolised properly you don’t have a cat’s chance in hell of truly overcoming this crap. My advice to you, as someone who seems to have walked the same path, is to read everything you can. Empower yourself, it’ll horrify you what little our doctors actually know… but just keep reading and searching and asking questions and making mistakes to inch closer. Good luck with your freezer! Sounds like a very good plan.
Enjoy your good day. I don’t know how your days look or what brings you respite, but I’ve bought a subscription to Hayu. I’ve decided I’m going to be better by the time I’ve watched every single episode of the Real Housewives franchise 😂 (that’s 5 episodes every day for a year). In between reading thyroid studies, I’m watching unstable middle aged women scream at one another and it’s ironically keeping me sane xx
Researching and reading is what many of us inflicted folk do best. It’s got to the stage where when I do see specialists their reports tend to contain language to the affect that I know what I am doing. That allows GPs to be better supportive over the years along with self advocating.
For my self care, I have disgustingly purchased all the media apps going. During Covid lockdowns, all the rules changed and I realised what self care is is what it does for me. If it makes me feel good and it’s not reaching the depths of destruction, that’s a good enough therapy session for me.
Caught up with the latest episodes of Greys Anatomy last night. And the Suicide Squad films the other week. TV binges are the best medicine (as I also told an assessor of welfare benefits recently) 🩷
Thank you, really interesting post - still trying to figure out what I need to do as I know there is something adrenal related goung on now I'm on NDT, but I'm not sure what it is or what to do about it! Your and the rest of the "Cortisol Crew's" posts are so helpful! Hope things keep getting better and better!
Foggy 🙂 I have stuck some quotes from useful books and basic guidance (gathered from reputable sources) in my bio if that’s helpful. My advice is just to keep reading, and asking questions and reading some more and asking more questions. You will get there xx
Huge Thank You again - I have saved that to Evernote. Sounds like I should try some adrenal cortex (Dr Peatfield's advice has been sound for me, I thought my adrenals were good enough at the last test but maybe not!)
Thank you for sharing this and being a descriptive guinea pig for us all😉
I hope it goes well! Earlier this year I had the feeling I needed to start again and add some cortisol.. stopped all meds....but I got ill much quicker than previous times I had stopped all meds and wasn't brave enough to try the cortisol! My problem is I actually can't think logically at all without meds, I get confused thinking and don't do things that make sense.
I'm actually doing better on my new regime but still have puffy face, bad allergy reactions (irony being doctors have dumped huge amounts of short term steroids on me but I'm debating self-dosing a fraction of the amount) and no real stamina so wondering if a little bit of cortisol will help.
I shall watch your journey with interest. Thanks again for sharing!
Alanna, in hindsight you don’t need to come off everything to avoid thyroid hormone uptake - you can get away with just lowering thyroid meds and then introducing cortisol. I think what you want to avoid is having high circulating T3 that isn’t reaching the cell nuclei (which is its target) suddenly reaching its target and being very overstimulating. I personally wanted the NDT out of me, it was making me feel like toxic sludge because being on thyroid meds in the presence of low cortisol can actually make you feel worse, which I didn’t know. Good luck and I hope you feel well soon xx
Interestingly I unwittingly did this whilst hoop jumping for the Endo by reducing my T3/4 doses whilst privately upping the adrenal glandular once I received my cortisol results.... February was a write off but at least my adrenals had been receiving assistance whilst I wallowed with the lower dosing... so it felt like two steps back at the time but I've just taken my third step forward it feels 🙏
Other business.... my poor old Fitbit is on it's way out it napped this afternoon which is a bit rude as I didn't! Which tagging device do you have that gives good HRV feedback? I know we discussed it before but can't remember the outcome so maybe only two and a half steps forward 😬😳🙃
I use an Apple Watch! I really like it, can set it to remind me of medications/supps etc, records all the useful stuff. I have a BP machine that syncs to my health app too but the latest model of Apple Watch can take blood pressure, which is weird 😦
you can shave the settings so that the text on the watch is VERY BIG but maybe still not big enough. I read all my important information on my phone tho because all of the data collated from the watch is automatically uploaded to the iPhone health App x
Hello dfc - we chatted briefly a while ago re cortisol and I couldn’t agree more, it’s hugely important to get it balanced. I’ve tried lots of options levo, glandulars Adrenavive all with/without hrt as I’m post meno. Like you, I stopped everything around 2 months ago and concentrated on HRT to relieve what were obvious meno symptoms. I dipped in and out of HC at 5/7.5/10mg and had some good/bad days. I’m now stable on hrt but the relentless morning/mid afternoon fatigue has made me decide to re-introduce metavive (levo makes me really ill) and continue with 5mg HC alongside. So far, so good but it’s early days. Thank you for your posts, they’re informative and encouraging.
hello 🙂 good luck with the metavive! Have you done bloods before? Be interesting to see how the metavive alters bloods as I’ve heard miss ex reviews on it. Let me know how you get on with the HC! I’m still working out my right dosing time and amount x
Yes I’ve used metavive before but I’m afraid it’s already failed! Back to just HC. I think my problem, whatever it is, doesn’t need thyroid hormone, it always makes me feel much, much worse.
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