Treating Low Cortisol: Hi again all, I saw... - Thyroid UK

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Treating Low Cortisol

cazmania7 profile image
57 Replies

Hi again all,

I saw someone mention that ideally one would treat adrenals before thyroid.

I took the saliva test a while ago which showed low morning cortisol and OK DHEA.

I’ve read in STTM / Dr S Myhill site and on other site and book that a small amount of hydrocortisone can help with this.

For now Ive just bought some adrenal glandular which a member recommend but I’ve found somewhere I can buy hydrocortisone online.

Has anyone tried this themselves? Scary without supervision but was binned off by last endocrinologist and will have to wait a couple of months to see the next one I have chosen (could be that I ask him to consider a trial of this under his care)

Thanks y’all!

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humanbean profile image
humanbean

I wouldn't recommend taking hydrocortisone. It will reduce the output of your own adrenal glands and, unlike the thyroid, the output doesn't return to "normal for you" if you stop the HC.

Hidden is knowledgeable about the adrenal glands, and hopefully might notice I've tagged her.

cazmania7 profile image
cazmania7 in reply tohumanbean

Thanks for your reply humanbean. Ok, I will bear this in mind.

I was seeing a professor and asked if we could try this as it might make me feel better. He said it probably would but he didn’t want to go down that path. I need to be able to work as would prefer quality of life over length of life but I do understand this is serious drug.

humanbean profile image
humanbean

You might be able to glean some useful info from this post by someone else whose cortisol was too low. Read the replies too.

healthunlocked.com/thyroidu...

cazmania7 profile image
cazmania7 in reply tohumanbean

Brill, I’ll take a lookie 😀

cazmania7 profile image
cazmania7 in reply tohumanbean

That’s a terrific reply to a post there with loads of brilliant information, some of which I have started, such as more vitamin c than normal and I’m starting adrenal glandular that pennyannie recommenced.

My saliva cortisol AM was so low it wasn’t even within the reference range at all, so I was shocked that the professor didn’t seem fussed about this. Said the test wasn’t really recognised etc.

I can’t promise I won’t try HC but if I do it will be from pure desperation but I’ve got enough to work on here until next week endo.

Thanks for taking the time to reply and for your brilliant advice as always. 👍🏻😀💊🏃‍♀️❤️

humanbean profile image
humanbean in reply tocazmania7

You're welcome. :)

McPammy profile image
McPammy

I had very low cortisol in the morning too 68 (155-650 range). I took a short synacthen test and I past it. So no adrenal issues. I even had a second short synacthen test and past that also. Definitely no adrenal issues. However, after seeing the same endocrinologist in Oxford as yourself he recognised that I’m a poor converter T4 to active T3. This was also confirmed by doing the DIO2 gene test as that was positive too. I was given a 3 month trial of T3 Liothyronine after switching to liquid Levothyroxine for 6 weeks and oh boy what a huge difference that made. Not only did my thyroid levels improve but also by cortisol improved to 460 from 68 in the morning 9am blood test. Optimal T3 improves everything in your body. My cortisol still good now as I have it tested every 3 months along with thyroid and all vitamins and cholesterol. Have you had a short synacthen test and are your vitamin B12, D, folate and ferritin all optimal. I also found my B12 and ferritin was deficient. These have now been resolved with B12 injections 3 monthly and ferris Fumerate on repeat prescriptions from my GP.

Did your private Endocrinologist suggest trying liquid Levothyroxine for a while and then a possibility of a T3 trial. Sorry not sure if you’re on T3 or not.

I’m going to private message you about the private Endo too, hope that’s ok with you.

cazmania7 profile image
cazmania7 in reply toMcPammy

Hi buddy. I saw the same guy as you. He gave me a six week trial of 15 mg Thybon a day. I felt no better and he has binned me off!! I’m so gutted 😔

ON72 profile image
ON72 in reply toMcPammy

Hi, could you please let me know which endro you saw and you are referring to? I would to see him/her too. Many thanks.

Redlester profile image
Redlester in reply toMcPammy

Were you given the short synacthen test on the NHS or did you do it privately? is that even possible??? what dose of T3 are you on as a matter of interest?? I'm waiting for results of my salivary cortisol tests and would expect mine could be very low.

cazmania7 profile image
cazmania7 in reply toRedlester

I paid privately through private endocrinologist. I’m taking 15mg T3 a day. I’m not well still though

Redlester profile image
Redlester in reply tocazmania7

Thanks Cazmania - sorry to hear you still are not well - I'm assuming you are taking that T3 in addition to levo?

cazmania7 profile image
cazmania7 in reply toRedlester

Yeh 125mcg levo

McPammy profile image
McPammy in reply toRedlester

I had my short synacthen tests on the NHS but you can have them done privately also. I’m on 75mcg Levothyroxine liquid daily. Plus 5mcg T3 twice a day or three times a day if my activity increase for a long period like going the gym regularly.

I only need 75mcg Levothyroxine to get me to the top of the blood range and same with 5mcg 2/3 times a day for T3 bloods. I have the DIO2 gene test as positive therefore a very poor converter T4 to active T3. We are all different in terms of how much thyroxine medication we need. It all depends on our own individual make up. As I’m a poor converter I need to top up T3 throughout the day. A person who hasn’t a poor conversion may only need it once a day. I can only convert 8% of levothyroxine according to my bloods when on Levothyroxine alone.

Adding the Liothyronine really boosted my cortisol but it did take a few weeks. It’s introduction has made a huge difference to my life. I forgot what it felt like to feel good, alive and energised each and every day. It’s been nothing short of a miracle for me.

cazmania7 profile image
cazmania7 in reply toMcPammy

I am so glad you back recovered. I really hoped I’d be the same as you. I’m feeling quite lost and hopeless if I’m honest

McPammy profile image
McPammy in reply tocazmania7

I’d go back on the T3 as advised by our private Endo. You need to stick with it for a good while, at least 3 months. Then check your levels and see how you feel. I felt immediately better but not all do, some need more time.

cazmania7 profile image
cazmania7 in reply toMcPammy

Thanks McPammy. I am indeed still on t T3 despite him saying “it would have worked by now” after six weeks.

I’ve also emailed him as you suggested and asked if we can try liquid levo. His secretary says he will see that email tomorrow.

If he bins me off again I’ve got an appointment with a different endo in Taunton for February!

Will also be going gluten free in new year and am working on vitamins and taking adrenal glandular.

So so very desperate to be well 😭

cazmania7 profile image
cazmania7 in reply toMcPammy

drmyhill.co.uk/wiki/Hydroco...

Redlester profile image
Redlester in reply toMcPammy

That is great that the addition of such a small amount of T3 has made such a great difference to you. I am on T3 only, but I am taking it for a form of thyroid hormone sensitivity so I am not yet on a high enough dose to see that kind of difference yet - but it has made a huge difference - and am waiting for results of my salivary cortisol tests so I am hoping they may show up something else which needs to be worked on - would be very surprised if they didn't! I hope I don't need a short synacthen test because the way things are going I have no idea how I would go about getting it done on the NHS in the region I am in and don't know where there would be private facilities I could get it without seeing an endo privately. So keeping fingers crossed that doesn't come back as an issue when I get my results!

cazmania7 profile image
cazmania7 in reply toRedlester

Hey how did you come to realise you had a sensitivity issue? I wonder how people know when to try T3 only

Redlester profile image
Redlester in reply tocazmania7

V long story but I have been very ill for over 20 years - closer to 30 truth be told - I had read a lot about John Lowe's work about treating people with T3 and had also read a lot of the research on people with ME/CFS having low T3 but it was only when someone suggested to me that I should read Hugh a Hamilton's book on Impaired Sensitivity to Thyroid Hormone and I read it that I saw myself - he could have been describing me.

Vikaa profile image
Vikaa

I’ve tried adrenal glandular. My cortisol was borderline low in the morning and in the afternoon and ok in the evening. My DHEA however was ok and 75% through the range. So after reading amazing reviews online and taking the adrenal cortex my DHEA increased as well, I have developed acne on my jaw line, neck and back, also my facial hair became more visible. I guess adrenal cortex is not for everyone since it also contains DHEA, if your DHEA is fine be careful with it x

cazmania7 profile image
cazmania7 in reply toVikaa

Oh blimey!! Sounds like you are turning in to the Hulk, lol! Honestly, I’ll take acne over unwell all day long 😂

Thanks for your reply 😀

Vikaa profile image
Vikaa in reply tocazmania7

😂😂 It wasn’t THAT bad though :)) but enough for me to realise it doesn’t suit me. To be honest with you I didn’t feel much difference after taking it for 2 months maybe a bit less tiredness but nothing much. But everyone is different of course.

Wired123 profile image
Wired123 in reply toVikaa

Hey could you share the brand of adrenal cortex? Where is it best purchased from?

Vikaa profile image
Vikaa in reply toWired123

I’ve used Thorne, adrenavive II. Thorne is weaker and works out more expensive than Adrenavive II. If you look it up in google you’ll find the shop which sells it in top search results x

Redlester profile image
Redlester in reply toVikaa

so sorry to hear about the acne Vikaa - am sure it is very distressing on top of everything else and last thing you would need, but thanks for the heads up - my DHEA did come back low though so hopefully if I try the adrenal cortex extract I won't get the acne - I have enough trouble with skin eruptions as it is - DHEA converts to testosterone so am wondering if it got boosted in your system was that what caused the acne?

Vikaa profile image
Vikaa in reply toRedlester

It’s ok :) it’s getting better now, thank you. I’m actually taking DIM now for my estrogen dominance and it really helps with the acne.It’s really good that you’ve tested it before taking the cortex, in your case I guess it will be perfect for you. As far as I know DHEA converts to estrogen too, surprisingly my testosterone is borderline low even though my DHEA is borderline high. It’s so complicated isn’t it? 🤪 Maybe your skin eruption is due to different hormonal imbalance, low progesterone or high estrogen ratio etc, the best way to find out is to test all sex hormones to see what’s happening, and see wether they’re balanced. I found this website forthwithlife is perfect as you can customise your blood test at a very reasonable price unlike medichecks where you need to buy separate bundle. I’ve used it once before, very similar to medichecks if you ever need to test different markers xx

Redlester profile image
Redlester in reply toVikaa

Hello Vikaa - glad to hear the skin is improving as I know how something which seems superficial when compared to all the other biggies we have going on in our bodies can get you down - and how hard it seems to be to fix it! My skin problems are definitely hormonal but it seems to be hard at the moment to pin down which particular one is the cause. I have done salivary hormone testing for all the hormones and my DHEA came back low - my progesterone was good and my estrogen is low - my cortisol was low during the day and slightly elevated at bed time. My skin has erupted over the last 10 days with clusters of ugly pustules - can hardly bear to look at myself in the mirror at the moment and am thinking it must come down to adrenals which are struggling badly at the moment. Thank you for the tip re the Forth site - I had never heard of that one and will have to have a good look at it once I use up my last medichecks kit and need to do other testing. I had been thinking about DIM but Regenerus [which I did the testing with] didn't mention it which surprised me because if the estrogen has built up in the liver and hasn't been detoxed which I am certain is a problem for me I'm not sure that gets picked up on a salivary test. What brand of DIM are you using and how much are you taking?

Vikaa profile image
Vikaa in reply toRedlester

He Redlester, aww bless you. It could be that your acne is caused by low levels of estrogen. I think DIM is not recommended when your estrogen level is low, as it converts active estrogen to less active, you really don’t need it by the sound of it. Milk thistle is really good for liver detox, it also has some estrogenic activity. But because your DHEA is low this could be the reason why your estrogen is low. Have you heard about Pregnenolone? Perhaps this could be something that’d suit you even better than cortex. If you decide to try it, start really low and see how you feel. I’ve tried it before to try and boost my low progesterone but it made my estrogen dominance even worse. It gives so much energy and lifted mood, I’m so gutted it didn’t suit me 😭 they’re available on amazon, I think the lower available dose is 30mg, I was cutting it in 3 parts and it really made huge difference in how I felt, but I think big deal of it has converted to DHEA and estrogen for me as it made me bleed like crazy during my period just at 10mg.

Redlester profile image
Redlester in reply toVikaa

Ouch Vikaa re the pregnenolone - and the impact on the period - but I think you are right re the DIM - yes - so incredibly difficult to know what to do for the best. Someone else on here - Jenny 365 suggested pregnenolone and said it had worked well for her, but I'm really at the point now where I am increasingly thinking that my skin issues [hideous at moment - am thinking if I devised paper bag with holes for eyes would it double up as suitable face mask protection??? as well as cover up the spots] like a lot of other things going on are to do with adrenal problems and that my best course of action is to do whatever I can to help to improve their functioning. I'm already doing most of the nutritional and vitamin and mineral stuff plus gentle exercise so the next level up would be Adrenal Cortex (was thinking of Adrenavive II) at a low level to see if that helps, and as my DHEA has tested low perhaps I might be ok with it. My biggest problem at the moment is with sleep - I'm waking up after a couple of hours and then have a period of wakefulness which is then followed by a sort of fitful sleep with multiple vivid dreams and nightmares all of which I can recall in detail the next day and then when it is time to get up I hit what feels like a wall of fatigue - so that seems to be confirming to me that my cortisol is too high at night and too low during the day. So, still researchingx

Vikaa profile image
Vikaa in reply toRedlester

Sorry I haven’t logged in for a while. Bless you, it must be so hard for you to deal with such amount of issues. I would definitely try pregnenolone starting at a low dose (10-15mg) and see how you feel. As I said the lowest dose I could find was 30mg so you may need to halve it. As your DHEA is low there is a good chance that your hormones are low as well and maybe your vivid dreams are due to that. When you try pregnenolone you’ll feel it straight away wether it suits you and you may find that your sleeping and skin problems will also resolve with the help of pregnenolone. If it doesn’t resolve your sleep issue check out melatonin, it’s also available over the counter, but personally I would try magnesium or valerian root (Kalms) first. All the best, I hope you’ll find the best solution that suits you and you’ll feel better soon xx

Redlester profile image
Redlester in reply toVikaa

Thanks for this Vikaa . No worries. That's interesting about the DHEA link and the vivid dreams - I'm hoping to try adrenal cortex - something like Metavive II or nutriadrenal first and see how I get on with that and wonder if that will in turn impact the DHEA [and then the vivid dreams]. For some reason I'm a little wary of pregnenolone [but am still on the fence for time being] as I don't want to interfere too much with too many hormones all in one go as then you don't know what is doing what to what if you see my meaning. I have tried melatonin from time to time but for some reason always end up discontinuing it. I have some Cherryactive in the cupboard which is rich in melatonin so might try that and see if that works better for me. I'm not getting the insomnia now - no more than the occasional period of wakefulness, but the dreams are off the scale at times and I don't feel rested when I wake up. So much to try to think about and sadly brain not working very well at moment!xx

Wired123 profile image
Wired123

Some interesting discussion here about cortisol.

My cortisol has been low for many years, I always get it checked in the morning at 9am and it’s usually between 140 and 190, so “borderline low”. Most doctors have just dismissed it and can’t be bothered to investigate further.

I’ve had 2 short synacthen tests which I just passed and also the insulin tolerance testwhu h I also just passed.

These tests are again flawed because they put your body under extreme stress to see how it reacts, when pushed hard my adrenals work.

I tried the 48 urinary cortisol which was actually high but the endo said that it’s unreliable.

However that doesn’t mean I have optimal or even adequate cortisol during normal functioning.

Paul Robinson talks in his book about low cortisol and how he fixed it with T3.

The only thing unreliable are endocrinologists. If you get fobbed off by one (sadly too common) go and see another, but don’t tell them too much about how you are coming for a second opinion (either it goes to their head and they will try unnecessary treatment or they take the easy option and will just give you the same answer as the previous endo as well as labelling you as a hypochondriac).

It’s taken me 9 Endos for someone to bother doing anything about my low T3 and cortisol. First step is the T3, then we may add in cortisol if the T3 does not resolve that.

cazmania7 profile image
cazmania7 in reply toWired123

My T3 levels are good according to the professor guy I was seeing which was why I was entertaining addressing low cortisol but am getting feedback here that it’s risky so I’m more reluctant now. I’ll try the glandular for now!

McPammy profile image
McPammy in reply tocazmania7

It’s very risky. It can damage your adrenals for life if you don’t really need it. Then you’ll be on steroids for life,as your adrenals will go to sleep and may never wake up, snd all the nasty consequences that steroids bring. Id be extremely careful.

cazmania7 profile image
cazmania7 in reply toMcPammy

Hi McPammy. Thanks buddy. It mentions it so casually in the books and stuff. It ought not to if risks are associated, or should at least mention them lol

If you take Hydrocortisone you run the risk of your adrenal glands stopping working

altogether so you then become steroid dependent which you really don't want as it's a life threatening condition. You would need to carry an emergency injection of Hydrocortisone with you at all times in case of an emergency. It will make you feel better but if your adrenal glands are working relatively well then they will produce cortisol. As the others have said you need to get your thyroid levels to an optimal level & you may find that your cortisol levels improve.

cazmania7 profile image
cazmania7 in reply to

Thanks Pauline. Does this apply to very small doses. In the books I’ve read it promotes small doses of what your body should be producing for itself thereby not exceeding what’s natural and not dosing via large amounts which I know is bad

I think I would still be cautious of taking even a small dose of HC, those of us who are on steroids due to adrenal insufficiency are encouraged to take less than 20mgs of HC or 5mgs of prednisilone as the daily therapeutic dose. I think you would be better trying to improve your thyroid levels & other hormones & vitamins. Following the removal of either a pituitary or adrenal tumour we start off on a fairly high dose then encouraged to taper the dose to try to stimulate the affected gland to "wake" up, it's a tough process but it does working through as it does restart the gland.

cazmania7 profile image
cazmania7 in reply to

Ok, thanks Pauline and sorry that you too have had such health problems. X

Elston profile image
Elston

Are you taking thyroxine??

cazmania7 profile image
cazmania7 in reply toElston

Yeh 125mcg a day

Elston profile image
Elston in reply tocazmania7

And are you always tired? ...Just that it could be some other deficiency unless you have had the adrenal to showing your low??..

I'm on thyroxine and I take steroids which give me lots of energy .

cazmania7 profile image
cazmania7 in reply toElston

Hi buddy, yeh. Always tired and feel generally unwell with headaches and dizziness etc.

I took saliva test which showed low morning cortisol but I’m working on vitamins and now taking adrenal glandular.

Just had a quick look at one of your previous posts. While the steroids give you energy you are still quite poorly by the looks of it?

Elston profile image
Elston in reply tocazmania7

I do have days where I am exhausted like today was one of them and I felt myself going into an adrenal crisis , so I doubled up on steroid..they kind of feed my brain but yes because I have to eat protien every 2hrs im ok but if I don't then I become ill...Also working 3 days a week is too much for me and I struggle? But before steroids , my blood sugar dropped rapidly, my heart rate was really slow and my brain did not function ...in s way my steroids are my life saver at mo ...

cazmania7 profile image
cazmania7 in reply toElston

It sounds like they have really helped you. Are you being prescribed them? In the books I’m reading it is not promoting prednisone but rather Cortef. Unsure of the difference but think one is natural the other not. But I don’t know. I think I’m suitably frightened off the idea but I’m seeing everywhere that if you’re levels are ok and you are still unwell to try a small amount of hydrocortisone.

Did you have RAI? I did. Biggest regret of my life.

Elston profile image
Elston in reply tocazmania7

I'm on hydrocortisone steroids...iv put slight weight on but with a good diet and small excersize it can be maintained...i don't know what rai is??

cazmania7 profile image
cazmania7 in reply toElston

It’s a toxic pill they give you to nuke your thyroid. Think you have an op to remove yours? Sounds like you have a good endo who has recognised adrenal insufficiency? How did they establish that? Syncathen test?

Elston profile image
Elston in reply tocazmania7

I first went with tiredness and told them to keep y energy up I had to eat constantly or id have no energy and my back kept paining then eventually it would go ??

cazmania7 profile image
cazmania7 in reply toElston

Ah so you had back pain too? I guess they must have performed some test though. They don’t seem to do anything just off what we say.

Half of them don’t even believe in adrenal insufficiency either 😔

Elston profile image
Elston in reply tocazmania7

Well my doc must do, she also testing me for low blood sugar, but its been steady away since iv cut down on some sugary foods and stuck to a protien diet.only trouble I seem to have now is bladder ? It hurts when I need to pass urine but I drink lots of water and if I take a fluconazole every month it helps me get rid of some yeast in my body.

cazmania7 profile image
cazmania7 in reply toElston

Sorry to hear you have such trouble it seems.

helvella profile image
helvellaAdministrator in reply toElston

RAI - Radio-active Iodine

Abbreviations and Acronyms

Some years ago, I started compiling a list of many of the abbreviations and acronyms that appear on the Thyroid UK forum ( healthunlocked.com/thyroiduk/ ) regularly. The idea was to make it relatively quick and easy to look up abbreviations and acronyms without being waylaid by the many irrelevant possibilities that web searches tend to return.

I continue to update the document quite frequently!

dropbox.com/s/2423slilh0or6...

You might never have downloaded a copy, or not for some time, perhaps months or years :-) If so, I suggest you download a copy and save it (or a shortcut) somewhere easy to find.

Please, if you think there is anything missing or wrong, let me know. Post on the forum or send me a Private Message.

If I have posted this because you asked about, or referred to, an abbreviation or acronym, please take this as intended, a way of helping you now and into the future. Not a criticism that you asked.

cazmania7 profile image
cazmania7 in reply tohelvella

Thanks helvella! I’m sure we all really appreciate help and advice from you guys as you’re all so knowledgeable. I looked back at some of my first posts and they were pretty much just questions around the various terms and names for medication and stuff, so your help is always very welcome!

Elston profile image
Elston in reply tohelvella

Thankyou..

Akabc123 profile image
Akabc123

Is this a cream and where do you put it

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