Taking Cortisol on a daily basis: I'm looking... - Thyroid UK

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Taking Cortisol on a daily basis

jc72 profile image
jc72
31 Replies

I'm looking into taking cortisol and would like to find out what it's like to take on a daily basis. If anyone would like to message me and tell me about their experiences past or present it would be very much appreciated. Thanks

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jc72 profile image
jc72
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31 Replies
greygoose profile image
greygoose

I'll tell you here. It was necessary - my cortisol was very low - so taking some made me feel good, in the beginning. As my levels rose, it didn't give me any extra kick. But it did make me swell enormously - water retention. It really isn't something to take unless you absolutely need it.

Also, if you don't have Addisson's, and want to take it for adrenal fatigue, and hope to come off it some day, the important thing is to never take it after 1.0 pm. Do not try and reproduce the natural production pattern of cortisol, just take one or two doses in the morning, to take the early morning strain off the adrenal glands.

But, it's not something to mess around with. I would not suggest anyone self-treats with it. You need a doctor who knows what he's doing. Hope that helps. :)

jc72 profile image
jc72 in reply to greygoose

Thanks that's really interesting, people here continue to surprise me. Did you find a way to bring down the swelling ie diuretics? Could you be more specific on the doses and timing? Does this not shut down the adrenals? I have an understanding Dr who might be able to help. Taking adrenal supplements seems to cause a negative feeback resulting in a temperature drop and me feeling down and tearful.

greygoose profile image
greygoose in reply to jc72

While I was taking the HC, diurectics did nothing for me. Only after I stopped taking it, the swelling went down over time.

Doses : I took anything from 60 to 10 mcg. My doctor first put me on 40 when I first got up, and 20 at lunchtime. He said I could take more if I was going through a lot of stress. But I never did. And, he said to never take any after 1.0 pm.

Your adrenals probably will shut down if you take it throughout the day. Just taken in the morning - leaving the adrenals to work for themselves in the afternoon and evening - does not shut them down.

When you say 'adrenal supplements', what exactly do you mean? If you mean certain adaptogens, like ashawgandha, they don't suit everybody. And, in my experience, are better at lowering cortisol than raising it.

Adrenals need vit C, B vitamins and salt.

jc72 profile image
jc72 in reply to greygoose

Nutri adrenal extra sent into some sort of crash, I basically got worse mentally. Physically my gut and anxiety improved lots. I really don't know about the adaptogens that people here take. I have normal cortisol levels on tests and produce around 36 for the day but have symptoms of adrenal fatigue as per my Dr. Ashawgandha helps with my anxiety, I take it daily. I've never heard of your protocol sound like creative thinking.

greygoose profile image
greygoose in reply to jc72

The adrenal cocktail is a well-known formula : half a tsp sea salt, half a tsp cream of tartar (potassium) in a glass of water. Stir well and drink before bed. Feeds the adrenals. Add a B complex to that, and you should have healthy adrenals.

jc72 profile image
jc72 in reply to greygoose

Thanks! I will give that a try.

greygoose profile image
greygoose in reply to jc72

:)

in reply to greygoose

i shall try this too. ... i am learning more on here in one evening than all the visits to the docs.x

greygoose profile image
greygoose in reply to

Because doctors just don't know about all this.

Ratkinson profile image
Ratkinson

I would be very careful, I take hydrocortisone on a daily basis ( I had my pituitary gland removed due to a tumour) 10 mg in a morning 5 at lunch and 5 at tea time . The idea in my situation is to take as little as possible to get through the day as the side effects of high cortiso are not good long term ( osteoporosis, heart disease etc etc) they dosage is to try and replicate the normal rhythm of the body.

Please by very aware that after a while of taking cortisol your adrenals could no longer react when your body goes too low and needs extra,this can be very dangerous. Also If you stop taking it , you will need to taper off it slowly so the adrenals can recover otherwise you also risk a crisis. Patients getting treated with steroids usually carry a card to say they are steroid dependant. I also have a medic alert bracelet and carry an emergency injection of hydrocortisone.

In my situation I need to increase my dose if I am ill or doing lots of exercise and then reduce it accordingly afterwards .It is very hard to taper down off a high dose . I have had to use the injection several times mainly due to a d&v bug as I was unable to keep the tablets down. A crisis can be life threatening.

You really need to be under the care of a good Endo, the ADSHG site is also a good resource.

Best wishes

Rachel

sulamaye profile image
sulamaye

I've been self medicating for a 18 months. All four saliva samples were below normal, but blood cortisol high implying that my cortisol was bound and inaccessible to body. I have m.e. Have found some horrid symptoms have been more stable, such as feeling nauseous and sugar crashing lots are significantly improved. My body would happily take 60-80 mcgs a day if I let it, I assume this is because I am ill and my body is constantly under stress. I took 25 mcgs eventually daily for about a year, split into two doses, in the past few months have come down to 15mgs but could t get lowers without sugar crashing etc resurfacing. No water retention, no other side effects. If your body needs HC because it's not making it you are very unlikely ti suffer high cortisol supplementing with 25 mcgs or less per day. The research I have read indicates that whilst some peoples adrenals fail after being in HC for extended time this is not automatic and in fact little to indicate it isn't simply that some people's bodies are failing and Wd fail anyway. Can't remember which research this was. I think taking it in the morning and before 1 pm is probably a good idea. You do need to be aware of the potential dangers, but I think on reflection it is less scary than the medical profession would have you believe. It has certainly made my quality of life significantly better, but I am still bed bound 50% of the day so it's not a miracle cure unless you have addisons.

jc72 profile image
jc72 in reply to sulamaye

I'm the opposite to you, my 4 salvia samples are normal but my blood cortisol is at the bottom of the range. My saliva samples are 21.4nmol, 8.15nmol, 4.80nmol & 1.90nmol before sleep. Whereas my 8am free cortisol is 10ng/dl (range 10-30). What this means I've no idea. My sleep quality is poor and I always wake up around 5am or earlier. My body seems stressed and gut health shows this.

sulamaye profile image
sulamaye in reply to jc72

I don't Understand why you want to add hydrocortisone in if what you are getting through to your body is adequate if not at the top of the range. Without the ranges I can't judge your results, but if you are awake early that is often a sign of high cortisol and you need to do things to bring it down not stick more into the system. What makes you think you need hydrocortisone I understand your blood amount is slow but you know what is bioavailable is good. Have you had a test for addisons? If your blood cortisol is low your GP should, if asked, refer you to an endocrinologist to test you for Addison's. This would be my approach if I were you and I hadn't already had a test. Addison's is notoriously rare as far as the NHS is concerned, but that doesn't mean that with the low blood count it isn't worth being thoroughly checked out for it. I would do this before I would go anywhere near putting hydrocortisone into my supplement regime.

sulamaye profile image
sulamaye in reply to jc72

I would address the cause of stress if you know what it is and work on gut health, gluten, dairy, sugar free and pre and probiotics.

jc72 profile image
jc72 in reply to sulamaye

I have tried all these things but my gut is stressed and I have a very low score on the GI stool test. When I took an adrenal supplement my gut improved overnight along with the anxiety it was the first big change in some time. Dr P did a physical examination and I showed symptoms of adrenal fatigue despite my results. I also have acid reflux which is linked to stress. Adrenaline can also wake up a person so I have looked at an adrenal supp without the adrenaline as they caused me to wake up around 3-4am. No test for addisons, the NHS endo wanted to do the least possible for me.

My saliva samples with ranges are 21.4nmol (7.45-32.56) , 8.15nmol (2.76-11.31), 4.80nmol (1.38-7.45) & 1.90nmol (0.83-3.86) before sleep.

Angel_of_the_North profile image
Angel_of_the_North in reply to jc72

Mine were similar:

Sample 1 14.8 (12 - 22)

Sample 2 5.4 (5.0 - 9.0)

Sample 3 4.1 (3.0 - 7.0)

Sample 4 1.8 (1.0 - 3.0)

Right pattern, but low in range.

I find taking adrenal cortex supplements helpful (nutri-meds or Adrenavive III)

jc72 profile image
jc72 in reply to Angel_of_the_North

the-natural-choice.co.uk/Ad...

This looks a good product, thanks. I think I'm right in saying it doesn't contain adrenaline. It looks like a cost effective version of thornes adrenal cortex which comes in 50mg caps.

How many Adrenavive do you take a day and what time do you take it? What improvements have you noticed? Thanks.

sulamaye profile image
sulamaye

It's very frustrating isn't it when you've tried lots of things, as someone with m.e you name it I've tried it, however how long were you dairy, gluten, sugar free? I have also found going grain free has seen the biggest impact, but it takes years rather than months to see real progress.

Stomach acid isn't necessarily stress, it can be low thyroid, etc, low stomach acid not keeping the flap closed causing reflux. I assume you've done the bicarbonate test?

If the supplements made a big difference why are you considering HC? Why not stick with the supplements? When I was first I'll my cortisol test was a bit high first thing but others within range and only DHEA was coming out as abnormal. I had terrible adrenaline symptoms, startle reflex up high so every little sound was like a gunshot through my body, tired wired etc. I think the body uses adrenaline to overcome cortisol problems when first struggling. Ironically all those symptoms were so much improved when three years later I got another test done to find all readings on the floor. My body had given up on adrenaline. It's very complex and hard to sort wheat from chaff. I'm still not sure I'd be chucking HC at it without evidence that my body would nt be over dosed.

jc72 profile image
jc72 in reply to sulamaye

I've spent over a year dairy and grain free, gluten free were possible and just natural sugars like fruit. No dairy has brought down anxiety, no grains stopped wind building up in my gut but no other improvements. I've not heard of the bicarbonate test but I use l-glutamine and gelatin first thing which has cleared up the acid reflux.

The adrenal supps caused a negative reaction when I increased them so I will try thornes adrenal cortex next. Also the first time I took an adrenal supp it really helped but after that the positive effects reduced as if my body adapted to them. My DHEA is on the low side but so is my good cholesterol.

For HC I was thinking of a single 10-20mg dose with breakfast then evaluate. Would my body compensate for this dose and starting make less cortisol on a daily basis? There is also CT3M. We don't appreciate the power of hormones until they are disrupted. I also have the startle reflex thing although not as high as yours but I can get started easily at times.

So if my blood cortisol is low something is affecting the absorption or delivery of cortisol into my system, is that right?

sulamaye profile image
sulamaye in reply to jc72

No I'd say if it is low you are not making huge amounts, but you are absorbing and converting it very efficiently, else you wouldn't have decent saliva stress test results.

If you have been grain free I am not sure how it is you are not automatically gluten free, as anything that might contain or be contaminated by gluten is going to be in a grain of some description.

I don't think we can say for sure how your body will adapt to cortisol, it may make less, it may just make your levels too high. The problem is all our bodies have their own sweet way of reacting it is impossible to say. I would hazard a guess that the root cause of our problems produces a different reaction in our bodies.

The bicarb test involves taking a teaspoon of bicarb in a glass of water and if you don't burp or hardly burp within the first 10 minutes you have low stomach acid not too much. Then taking something like hydrozyme betain hydrochloride will help aid digestion.

What thyroid meds are you on? Yes CT3 may help, but with me it just slightly raised my morning sample and dropped the others even lower, which was the point that Paul Robinson was suggesting I consider HC.

jc72 profile image
jc72 in reply to sulamaye

Sorry the grain free is just my misunderstanding of gluten free. I go through the usual cycle of waking up tired until mid day then feel better, then sleepy again around 4pm then wide awake after 6pm.

So the blood cortisol shows how much cortisol I am making whereas the saliva test shows absorption and conversion?

The adrenal supps didn't seem to top up my own cortisol but rather caused a negative feedback in the HPA axis and shut me down. Perhaps this happened easily because I was producing low levels of cortisol?

Now I've heard of the bicarb test. I do burp quickly after taking l-glutamine although not the same thing it is usually within 10mins.

I'm not on thryoid meds. T3 is mid range and T4 is bottom of the range. Some take the CT3 during the night around 2am then go back to sleep. Who is Paul Robinson? Thanks.

sulamaye profile image
sulamaye in reply to jc72

Paul Robinson is the person who developed the ct3 method, if you are going to use it you would be advised to read his book, and use the Facebook group who will guide you through t3 only. However you still haven't said what thyroid meds, there's a big difference between t4 only, NDT, t3 only and t4 /t3 combo. Have you explored all these fully, some people have to find the right dose. Yes I took my first t3 dose at about 4am it all depends what time you normally wake. That's why you need to read his book, get it from the horses mouth. You learn a lot about thyroid function and cortisol from it. Amazon.

sulamaye profile image
sulamaye in reply to jc72

Yes what is in your blood is what your body makes, what the saliva test measures is what is getting through being absorbed, hence my concern about you adding HC. If adrenal sups caused a problem then HC would probably do the same.

jc72 profile image
jc72 in reply to sulamaye

Thanks for explaining this I think its starting to make sense. So basically I produce low amounts of cortisol but what is produced is getting through. The low blood levels don't seem to work for me. When a private endo abroad he saw these blood levels and recommended cortisol and didn't look at saliva tests.

So when I took an adrenal supp containing cortisol I felt better but then my body started to adjust to the extra cortisol and produced less. Eventually I started to shut down my own adrenals which can happen with small doses of cortisol.

If I took one morning dose of HC and felt my symptoms improve surely there is a direct link? Therefore I would need a treatment of HC to treat my adrenal fatigue?

I'm not on thyroid meds although they wouldn't work properly if my adrenals are fatigued.

I have read about the CT3M method now. Can you recommend a decent UK Endo that prescribes cortisol if it's needed. Thanks.

sulamaye profile image
sulamaye in reply to jc72

I'm still not convinced you need HC because your body is using what it makes very efficiently. It could as easily be that using the supplement overdosed you and after an initial boost your levels were too high, and it built. Yes an endo not looking at saliva stress Wd mistakenly think you needed HC.

I can't recommend an endo because I don't know any that would give you HC without carrying out a short synathenacthen test (might have spelt that wrong) or if they consider saliva tests would see your tests as your body managing.

Your adrenals are more likely to crash if you are not getting enough t3, whether via t4 or t3 direct. My terrible saliva test came after my GP had robbed me of a big chunk of my prescription. Yes bad adrenals will inhibit t3 uptake, but I don't think that's going to be the case in your case, yet, because your body is getting enough cortisol, it is extracting what it needs from what is in your blood. If you need thyroid meds then you need to take them before your body crashes it's adrenal system and then it will struggle to use t3. However, if you have had a full thyroid panel done, including rt3 and you don't need them then there's no point taking them.

What did dr p think you needed to do exactly, have you seen him more than once?

What is your diagnosis so far?

jc72 profile image
jc72 in reply to sulamaye

Dr P recommended nutri adrenal extra to help repair the adrenals. As I gradually built up the dose from half to 1 tablet I started to crash and felt worse. This treatment was to last a month then go back and see him. I am due to see him but want to bring some options to the table.

I have symptoms that are a good match for adrenal fatigue and blood pressure and breathing tests used by Dr P also match this.

I need to do an rt3 test. If this is high then that will surely fit in with an adrenal issue? He thinks my thyroid is ok but would improve once the adrenals recovered.

So which is more important blood cortisol or saliva cortisol? If you are right one things for sure higher cortisol makes me feel better, less tired, more creative, less anxious and clears up my gut problems so you can see how frustrating this is.

sulamaye profile image
sulamaye in reply to jc72

Saliva is far more important. that's why it's used in many research products, what's in the blood is not what's in the cells.

No Rt3 does not necessarily point to adrenals. It just points to stress in the body, that can be dieting, or illness, trauma to the body etc. Doesn't have to have anything to do with the adrenals.

The symptoms of too much or too little cortisol can be very similar, just as with thyroid. Too much thyroid meds can an does make people feel like they are hypothyroid. The same goes for cortisol, so I repeat that taking the nutris and crashing is not a sign that you needed them but more likely to be a sign that you didnt. Did you have the saliva stress results when you saw dr P? I find it hard to believe he would think you had low cortisol if he had those saliva tests.

You will have to wait and see him.

I am struggling to understand why you think HC is the way to go, you think the adrenal nutris werent strong enough and that's why you crashed so you need HC? As i said before my instinct and responding to your test results would be completely the opposite. But I'm not a doctor, so I'd be interested to see what Dr P does say. Let us know.

jc72 profile image
jc72 in reply to sulamaye

Thanks for all the helpful replys I've a long way to go. Yes Dr P saw my saliva tests but as mentioned I had plenty of symptoms linked to adrenal fatigue. I think it's always worth a try even if your wrong you can cross something of the list.

The adrenal nutris were enough to make me crash but the low does wasn't enough to replace what was lost. HC at the right dose could restore the correct amount. Tests don't always tell the truth. I know someone who had very good thyroid blood results but had symptoms of low thyroid. When they took thyroid meds they improved alot.

I've come across other cases on forums involving different hormones whereby the test showed everything was ok but the patient showed symptoms that the tested hormone was low.

You make a good point about the nutris and it could be that I need to address thyroid instead as T3/T4 results are low to mid range.

sulamaye profile image
sulamaye in reply to jc72

The thing about the stress test is that it is showing what's getting through to the cells. If only thyroid tests showed that! Blood tests are unreliable for thyroid meds precisely because they can only show you what's swilling around in your blood which is not necessarily related to what is getting into the cells. I would definitely look at RT3 and/or possible try a tiny bit of NDT or something before I put HC into the mix. You are right that it's good to cross things off your list but HC is a tricky beast. If you try NDT, for example, you will be able to tell if you feel better or worse. HC will sometimes make you feel you need more and more and of course unlike with thyroid meds, you are in danger of interrupting the feedback loop big time with HC, something that doesn't seem to happen with too much thyroid med.

HC was a last resort for me. I would make it your last resort too.

jc72 profile image
jc72 in reply to sulamaye

Thanks that's good advice :)

sulamaye profile image
sulamaye

I am on the wahls paleo protocol. It has made a big impact on my blood markers and liver function as well as some improvement in symptoms. her ted ed talk is really interesting if you havent already seen it. youtube.com/watch?v=KLjgBLw...

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