I replace ALL my hormones. This brought me back to life. But is it sustainable for decades?

[bertiedog]

s the forum that you mentioned only for people with an actual diagnosis of Addisons (which I do not have) or is it for anyone with pituitary and/or adrenal suppression of ACTH & Cortisol? I would love to get more feedback from others who have taken Cortef for years if they have ever found a way to successfully & safely taper off of it.

Yes there are people like yourself on the Facebook group for Addisons. I am sure you would find it helpful because there are many on there who have the same pattern as yourself. It is full of useful information.

I am glad though that you have settled on 10 mg h/c and it is obvious now that you need it. I do think you were lucky to have such a good doctor to guide and help you through this as many suffer for years with similar symptoms but don't get the help and stay extremely ill with no real life.

Pam

 

[Gingergrrl]

Yes there are people like yourself on the Facebook group for Addisons. I am sure you would find it helpful because there are many on there who have the same pattern as yourself. It is full of useful information.

I will PM you to get the info for this group and I would love to ask them some questions!

I am glad though that you have settled on 10 mg h/c and it is obvious now that you need it.

I definitely need it b/c my pituitary is suppressed and not able to make enough ACTH to tell my adrenals to make the Cortisol. My Endo wants me to take the minimum dose of Cortef that allows me to function (which is about 8.75 mg/day) but I feel MUCH better with 10 mg/day and he was okay w/that. He ultimately decided against me getting an MRI of pituitary b/c I am allergic to contrast dye and it would not show anything without it (and likely would not show anything at all unless there was massive inflammation or a tumor which he does not suspect). We wondered if I have autoantibodies against the pituitary but there is no commercial test for this plus most of my other pituitary hormones are in the normal range. I'm sorry to take this thread off track

 

[bertiedog]

My Endo wants me to take the minimum dose of Cortef that allows me to function (which is about 8.75 mg/day) but I feel MUCH better with 10 mg/day and he was okay w/that

You will do brilliantly if you can stick to such a low dose but you know the symptoms now of when you are too low in cortisol. As you know its when extra stressors come along difficulties can arise but even then I find that just an extra 2.5 mg h/c will help me. Sometimes it seems to go in phases when there is prolonged extra stress plus a virus comes along and that can put me in trouble and I have to up my dose a touch. That is what happened in January this year after I had a bad reaction to Botox for migraine. It really did stress my nervous system for a month and I had prolonged dizziness/POTS and lack of energy so it was then I had to go up to 7 mg Pred from the usual 6.5. I have tried many times to get back to 6.5 and manage for a few days but start losing energy or getting extra pain and need to go back up so at the moment I am going very slowly back to 6.75 Pred and just about coping but can feel the difference.

Having the 2nd Pfizer vaccine last week had pushed me back yet again because I reacted to it within minutes but again it was my nervous system that suffered most so back up to 7 for a few days. I just need some very boring weeks with the sun out for things to settle down!

(Since the 1st vaccine in early February I have developed a nasty allergic reaction to something in my breakfast and again this has stressed my nervous system. It seems that I have become allergic to any gluten-free bread despite me eating this for at least the past 3 years. Within minutes I tingle all over become overheated and develop a scarlet rash all over my body, even my ears go bright red! I then start to feel unwell so have had to take antihistamines some of which give me migraines. As you can imagine all this is not good for somebody who doesn't possess the ability to make cortisol, the stress handling hormone!

Pam

 

[Gingergrrl]

You will do brilliantly if you can stick to such a low dose but you know the symptoms now of when you are too low in cortisol. As you know its when extra stressors come along difficulties can arise but even then I find that just an extra 2.5 mg h/c will help me.

When I was taking the 8.75 mg of Cortef per day, I was having so many days that I needed to take the extra 2.5 mg that I finally decided just to take 10 mg Cortef per day and since then I have not needed to take anything extra. The only exception was at the beginning of April I had a minor surgical procedure and the anesthesiologist gave me a stress dose of IV Solu-Cortef to be safe.

I had prolonged dizziness/POTS and lack of energy so it was then I had to go up to 7 mg Pred from the usual 6.5. I have tried many times to get back to 6.5 and manage for a few days but start losing energy or getting extra pain and need to go back up so at the moment I am going very slowly back to 6.75 Pred and just about coping but can feel the difference.

I hope that you will be able to get back to the dose of Pred that you want and that works best for you.

Having the 2nd Pfizer vaccine last week had pushed me back yet again because I reacted to it within minutes but again it was my nervous system that suffered most so back up to 7 for a few days. I just need some very boring weeks with the sun out for things to settle down!

I didn't realize that you had the 2nd Pfizer vaccine! (or I forgot)?! When you said you reacted to it within minutes, was it an allergic reaction or something else?

Since the 1st vaccine in early February I have developed a nasty allergic reaction to something in my breakfast and again this has stressed my nervous system. It seems that I have become allergic to any gluten-free bread despite me eating this for at least the past 3 years. Within minutes I tingle all over become overheated and develop a scarlet rash all over my body, even my ears go bright red! I then start to feel unwell so have had to take antihistamines some of which give me migraines. As you can imagine all this is not good for somebody who doesn't possess the ability to make cortisol, the stress handling hormone!

It sounds like the vaccine really stimulated your immune system so you are reactive to foods that were safe for you in the past. Can you take an antihistamine before you eat those foods in order to avoid getting the reaction and also do you have an EpiPen (just in case you needed it)?

 

[bertiedog]

I didn't realize that you had the 2nd Pfizer vaccine! (or I forgot)?! When you said you reacted to it within minutes, was it an allergic reaction or something else?

I don't think that it was an allergic reaction as such more like my nervous system has been activated by all these other allergic reactions I have been having so getting the injection just seemed to send it off so to speak, hence the high blood pressure and anxiety. I spoke to another lady I know about it and she is roughly the same age as me and she also had similar symptoms but hers went on for longer.

t sounds like the vaccine really stimulated your immune system so you are reactive to foods that were safe for you in the past. Can you take an antihistamine before you eat those foods in order to avoid getting the reaction and also do you have an EpiPen (just in case you needed it)?

That is what I think happened too but my GP says its nothing to do with it. I am not convinced. I agree I need to take an antihistamine when I get up. I have had another reaction this morning and didn't take one so don't feel great at all. I think the Citrizine antihistamine gives me migraines, Loratadine doesn't seem to work but I am helped by Fexofenadine even at half a tablet. (I know this might seem off topic but actually it isn't because when one has adrenal issues then allergies are very common).

I don't have an EpiPen I understand they are in very short supply. I tend to get an overproduction of adrenaline very easily and that is one reason why I need a low dose beta blocker to keep it under control.

Pam

 

[Gingergrrl]

That is what I think happened too but my GP says its nothing to do with it. I am not convinced. I agree I need to take an antihistamine when I get up.

You know your body better than anyone (regardless what your GP says)! I think it is a good idea to take the antihistamine when you get up (or prior to eating foods that are causing a reaction)... at least for now.

I think the Citrizine antihistamine gives me migraines, Loratadine doesn't seem to work but I am helped by Fexofenadine even at half a tablet.

Cetirizine (Zyrtec in the US), is my regular H1 blocker (unless I have a strong allergic reaction that requires Atarax or Benadryl which is almost never for me at this point). I would take whichever one you tolerate the best.

(I know this might seem off topic but actually it isn't because when one has adrenal issues then allergies are very common).

I'm going to ask you more about this later when I reply to PM.

I don't have an EpiPen I understand they are in very short supply. I tend to get an overproduction of adrenaline very easily and that is one reason why I need a low dose beta blocker to keep it under control.

I don't know how it works to get an EpiPen in the UK but in the US they have jacked up the price to around $600 (for the Mylan brand name EpiPen) unless you get a Prior Authorization from your insurance company (from your doctor). I have no problem getting the Prior Auth approved by my insurance since I have a history of anaphylaxis.

I also take a very low-dose of beta blocker (atenolol) for POTS and in my case, I need to carry the EpiPen regardless of my horrible reactions to epinephrine b/c if my throat started to close up (which I don't think will ever happen at this point), I would need it in an emergency to be safe.

 

[thingsvarious]

You know your body better than anyone (regardless what your GP says)! I think it is a good idea to take the antihistamine when you get up (or prior to eating foods that are causing a reaction)... at least for now.



Cetirizine (Zyrtec in the US), is my regular H1 blocker (unless I have a strong allergic reaction that requires Atarax or Benadryl which is almost never for me at this point). I would take whichever one you tolerate the best.



I'm going to ask you more about this later when I reply to PM.



I don't know how it works to get an EpiPen in the UK but in the US they have jacked up the price to around $600 (for the Mylan brand name EpiPen) unless you get a Prior Authorization from your insurance company (from your doctor). I have no problem getting the Prior Auth approved by my insurance since I have a history of anaphylaxis.

I also take a very low-dose of beta blocker (atenolol) for POTS and in my case, I need to carry the EpiPen regardless of my horrible reactions to epinephrine b/c if my throat started to close up (which I don't think will ever happen at this point), I would need it in an emergency to be safe.

Cetrizine is a good choice.

But why do you take a low dose atenolol for POTS?

 

[Learner1]

Cetrizine is a good choice.

Unless one is allergic to the lactose that seems to be in most OTC antihistamines on the US market.

But why do you take a low dose atenolol for POTS?

because it will lower blood pressure. Most people with POTS already have low blood pressure. Only some of us have hyper POTS and benefit from higher doses which lower are to high blood pressure.

When I was taking the 8.75 mg of Cortef per day, I was having so many days that I needed to take the extra 2.5 mg that I finally decided just to take 10 mg Cortef per day and since then I have not needed to take anything extra. The only exception was at the beginning of April I had a minor surgical procedure and the anesthesiologist gave me a stress dose of IV Solu-Cortef to be safe.

I've been slowly been able to lower my hydrocortisone (most insurance won't pay for brand name Cortef. Besides all versions have lactose so I have it compounded) dose from my original 30mg in 2016 to 1mg these days.

Originally, I was taking it in 3 doses, reminded when I started to crash. As I worked my infections, autoimmunity and nutrient deficiencies, I found I needed less, and was on 10mg a day. Then I found if gained 15lbs around my waist, and multiple tests showed my cortisol was a little high midday, so I dropped the dose by taking only as much as I needed to avoid crashing and ended up on 2.5mg for a long time, lost the weight, and was functioning.

Then I was given a drug for osteoporosis, which provoked an adrenal crisis. Excruciating pain, which I originally thought was my kidneys, but turned out to be my adrenals crying when they couldn't make enough cortisol, so I ended up in dexamethasone for 2 weeks, gained 10lbs, and have been slowly working my way back down to 1mg a day.

So, I learned that though I am making some cortisol, my body can't respond to a crisis, do having a steroid on hand is wise...

 

[Gingergrrl]

because it will lower blood pressure. Most people with POTS already have low blood pressure. Only some of us have hyper POTS and benefit from higher doses which lower are to high blood pressure.

This is exactly right and in my case, I have very low blood pressure (life-long) but it got even extra low when I first developed POTS and stayed around 80/50 for several years. I used to take multiple meds for POTS but once my overall illness went into remission, I now just take a low dose of Atenolol for the POTS and do not have any symptoms unless I miss a dose, or it is really hot outside, or I really over-do it.

I've been slowly been able to lower my hydrocortisone (most insurance won't pay for brand name Cortef. Besides all versions have lactose so I have it compounded) dose from my original 30mg in 2016 to 1mg these days.

I was able to get a Prior Auth approved for the brand-name Cortef b/c it is dye-free and the generics all had dyes in them that I am allergic to.

Originally, I was taking it in 3 doses, reminded when I started to crash. As I worked my infections, autoimmunity and nutrient deficiencies, I found I needed less, and was on 10mg a day. Then I found if gained 15lbs around my waist, and multiple tests showed my cortisol was a little high midday, so I dropped the dose by taking only as much as I needed to avoid crashing and ended up on 2.5mg for a long time, lost the weight, and was functioning.

My current dose of Cortef is 10 mg per day and I will be doing labs for my Endo next week. I also gained weight from Cortef and could not lose it no matter what I did (and just kept losing and gaining the same 5 lbs endlessly without being able to lose beyond that). I have eliminated carbs the last 3-weeks, and have now lost the same 5 lbs again. But this time, I have not gained it back and feel hopeful that I will continue to lose more and hopefully some day get back to my normal weight.

My tests consistently show very low (often non-existent) ACTH and also low Cortisol. There is some issue where my pituitary cannot kick in and create ACTH so I have to remain on the Cortef to avoid an adrenal crisis. I have tried every solution that I can think of and my main doctor and my Endo discussed the situation last year (I think it was almost a year ago at this point). I had spent over 2.5 years tapering off Cortef but I was not able to create the ACTH on my own which was a bummer.

Then I was given a drug for osteoporosis, which provoked an adrenal crisis. Excruciating pain, which I originally thought was my kidneys, but turned out to be my adrenals crying when they couldn't make enough cortisol, so I ended up in dexamethasone for 2 weeks, gained 10lbs, and have been slowly working my way back down to 1mg a day.

Oh @Learner1 this is horrible! Did this just happen recently? How did you know that it was an adrenal crisis?

So, I learned that though I am making some cortisol, my body can't respond to a crisis, do having a steroid on hand is wise...

Definitely! In your case, is your ACTH level normal but your Cortisol is low or are they both low?

 

[Learner1]

Oh @Learner1 this is horrible! Did this just happen recently? How did you know that it was an adrenal crisis?

Yes, it did. I immediately hit chills and nausea, followed by fatigue, then woke up the next day to excruciating pain at what I thought was the top off my kidneys, but was actually my adrenals complaining because they couldn't make enough cortisol to ride to the occasion.thr doc suggested I take high dose hydrocortisone, but I also had dexamethasone on hand that I use with IVIG, So I took some and within 20 minutes the excruciating pain was gone. But then every four to five hours the pain would return, so I had to stay on dexamethasone for a couple of weeks, and then followed up with higher dose hydrocortisone until I could taper down to my normal amount.

Definitely! In your case, is your ACTH level normal but your Cortisol is low or are they both low?

I had started tapering because my cortisol level looked high in the afternoon. My early AM cortisol has always been gone, but previously it flatliners after my first hydrocortisone dose. But then, I noticed that I was gaining weight around the middle, and I had three different tests show that my cortisol looked a bit high as I described. So, I carefully backed down off it, and lost all the weight. I'm under no illusions that it's fixed now, given the adrenal crisis, but I believe I have enough cortisol for normal things, and I will just take a little extra when I'm feeling that I'm putting too much stress on my body or brain. I believe my ACTH has been normal recently, but when I had a ACTH stim test 3 years ago, my cortisol production did not rise in response as it should have. I think you make a good point that maybe something upstream is not causing the right amount of cortisol to be produced when I need more. I take plenty of adrenal.dupporg nutrients, which I believe has helped me regain adrenal function, while dealing with my infections and autoimmunity issues.

 

[Gingergrrl]

thr doc suggested I take high dose hydrocortisone, but I also had dexamethasone on hand that I use with IVIG, So I took some and within 20 minutes the excruciating pain was gone. But then every four to five hours the pain would return, so I had to stay on dexamethasone for a couple of weeks, and then followed up with higher dose hydrocortisone until I could taper down to my normal amount.

That is really scary but I am glad that you figured it out quickly and that you are doing okay now.

and I had three different tests show that my cortisol looked a bit high as I described.

Do you mean three blood tests or that you did three different types of tests to measure Cortisol (like blood, urine, saliva... or something different)? I'm assuming that you were measuring your Cortisol levels while you were still taking some dosage of Cortef (or had you completely tapered off of it for the blood tests)?

I'm under no illusions that it's fixed now, given the adrenal crisis, but I believe I have enough cortisol for normal things, and I will just take a little extra when I'm feeling that I'm putting too much stress on my body or brain

I'm now of the belief (and so are my doctors) that I will be taking Cortef for life (but I still find this very discouraging).

I think you make a good point that maybe something upstream is not causing the right amount of cortisol to be produced when I need more

I actually have no idea in your case but in my case, I am not creating enough ACTH and this appears to be the problem. If I understand it all correctly, as I was VERY slowly lowering my Cortef dose over the course of 2.5 years, my pituitary should have kicked in and started to increase the amount of ACTH that it was making on it's own. But sadly, this did not happen and when I ended the taper, my ACTH was undetectable on blood tests and I felt so poorly that I could not function and was at risk of an adrenal crisis without going back on the Cortef.

I take plenty of adrenal.dupporg nutrients, which I believe has helped me regain adrenal function, while dealing with my infections and autoimmunity issues.

What is adrenal.dupporg?

 

[Learner1]

Do you mean three blood tests or that you did three different types of tests to measure Cortisol (like blood, urine, saliva... or something different)? I'm assuming that you were measuring your Cortisol levels while you were still taking some dosage of Cortef (or had you completely tapered off of it for the blood tests)?

I have never taken Cortef. I find your use of it confusing. I had to look it up the first time and founf out it's brand name hydrocortisone. Most people don't take the brand name, as their insurance will only cover the generic, in this case hydrocortisone. I realize you're lucky as you got a tier exception from your insurance company, just like I did for another brand name drug that I was allergic to all other forms of. But, for readability for most people, hydrocortisone is a more useful word.

I had 2 blood morning cortisols and a 24 hour saliva test over 3 months all suggest my cortisol was high. The 2 morning cortisols were in the higher half of the normal range, and this is what the 24 hour test showed, while taking 5mg hydrocortisone at 1030am and 5mg at 3pm.

This wasn't straightforward, as taking my blood at 9:30am didn't really illustrate the problem, as shown by the graph.

A year later, after slowly dropping my cortisol dose, by using as little as I could get by with, dropping from the 10mg daily in 2 doses to 2.5mg in one dose at 1030am, this is what the curve looked like:

So, this was a little low in the afternoon, so I moved the dose later to 1pm.

This was 2 months prior to the adrenal crisis when I had the added stress of this one time drug, which my adrenals couldn't respond to. So, most of the time, between my own production and the little hydroxycortisone I take, I'm fine. However, I now learned if my body is going to face additional stress, I'm going to need to compensate for my adrenals not rising to the occasion, and supplement extra hydrocortisone.

The other factor I have going on is that I am still doing IVIG every 3 weeks, an example of an extra stressor. For this, my doctor has anticipated my need and given me a stronger, longer acting steroid, SoluMedrol, then the next day, I take a little dexamethasone, followed by a higher dose hydrocortisone day, before tapering down to my normal hydrocortisone dose. This extra burst of steroids for 3 days every 3 weeks probably isn't helping full recovery of my adrenals, and I do have to manage a mix of steroids, but even with all this going on, my adrenals are working to a degree and have vastly improved from where they were in 2016 when I started around hydrocortisone.

The other thing that I do is ensure that I am supporting adrenal function with nutrients that are needed by the adrenals, like vitamin C and pantothenic acid, vitamin B5. And Vital Nutrients Adrenal Support:

https://www.vitalnutrients.net/adrenal-support.html

I'm not sure if this helps my ACTH or not. I believe mine works to some degree, but am not sure how much.

What is adrenal.dupporg?

My apologies... Fat fingers. Adrenal Support... see above.

 

[Gingergrrl]

I have never taken Cortef. I find your use of it confusing. I had to look it up the first time and founf out it's brand name hydrocortisone. Most people don't take the brand name, as their insurance will only cover the generic, in this case hydrocortisone. I realize you're lucky as you got a tier exception from your insurance company, just like I did for another brand name drug that I was allergic to all other forms of. But, for readability for most people, hydrocortisone is a more useful word.

Sorry for the confusion and I'll type "hydrocortisone" in future posts and put (Cortef) in parentheses to make it more clear. For some reason, my doctor wanted me on the brand name Cortef from the first time he prescribed it for me in 2015 (maybe b/c the generics all had dyes)? He always referred to it as Cortef so I just got used to calling it that. Probably like saying "Tylenol" vs. "Acetaminophen" but I know what you mean and will type HC.

I had 2 blood morning cortisols and a 24 hour saliva test over 3 months all suggest my cortisol was high. The 2 morning cortisols were in the higher half of the normal range, and this is what the 24 hour test showed, while taking 5mg hydrocortisone at 1030am and 5mg at 3pm.

So you never tapered off hydrocortisone and then did the tests and it was always to measure your levels while taking HC? I've done a million Cortisol tests (blood, urine & prior saliva test) but never had a test yet where my levels were high and they are always too low.

This was 2 months prior to the adrenal crisis when I had the added stress of this one time drug, which my adrenals couldn't respond to. So, most of the time, between my own production and the little hydroxycortisone I take, I'm fine. However, I now learned if my body is going to face additional stress, I'm going to need to compensate for my adrenals not rising to the occasion, and supplement extra hydrocortisone.

When you said "hydroxycortisone" is that still the same thing as regular hydrocortisone (Cortef) or something else? My main doctor & Endo have both now told me that I need to take extra HC if there is a physical stressor and in April when I had a minor surgical procedure (actually you know all about that one!), they gave me Solu-Cortef by IV as a stress dose.

The other factor I have going on is that I am still doing IVIG every 3 weeks, an example of an extra stressor. For this, my doctor has anticipated my need and given me a stronger, longer acting steroid, SoluMedrol, then the next day, I take a little dexamethasone, followed by a higher dose hydrocortisone day, before tapering down to my normal hydrocortisone dose. This extra burst of steroids for 3 days every 3 weeks probably isn't helping full recovery of my adrenals, and I do have to manage a mix of steroids, but even with all this going on, my adrenals are working to a degree and have vastly improved from where they were in 2016 when I started around hydrocortisone.

This is interesting and probably why your adrenals are slower to recover b/c each month you are getting an extra burst of steroids. But it sounds like you have a system that is working really well.

I'm not sure if this helps my ACTH or not. I believe mine works to some degree, but am not sure how much.

This is what I was curious about and if you have ever done a morning blood test for ACTH (without taking any HC that morning) and if your ACTH level was normal? I don't mean the ACTH Stim test vs. just a regular blood test for ACTH that you would do at Quest or LabCorp?

I am doing my labs tomorrow morning at Quest for my Endo to monitor where my ACTH & Cortisol levels are now that I have been taking 10 mg of HC (Cortef) per day.

My apologies... Fat fingers. Adrenal Support... see above.

No worries! Do you know if adrenal support supplements would help if the root problem is pituitary suppression of ACTH (as it appears to be in my case)?

 

[thingsvarious]

Sorry for the confusion and I'll type "hydrocortisone" in future posts and put (Cortef) in parentheses to make it more clear. For some reason, my doctor wanted me on the brand name Cortef from the first time he prescribed it for me in 2015 (maybe b/c the generics all had dyes)? He always referred to it as Cortef so I just got used to calling it that. Probably like saying "Tylenol" vs. "Acetaminophen" but I know what you mean and will type HC.



So you never tapered off hydrocortisone and then did the tests and it was always to measure your levels while taking HC? I've done a million Cortisol tests (blood, urine & prior saliva test) but never had a test yet where my levels were high and they are always too low.



When you said "hydroxycortisone" is that still the same thing as regular hydrocortisone (Cortef) or something else? My main doctor & Endo have both now told me that I need to take extra HC if there is a physical stressor and in April when I had a minor surgical procedure (actually you know all about that one!), they gave me Solu-Cortef by IV as a stress dose.



This is interesting and probably why your adrenals are slower to recover b/c each month you are getting an extra burst of steroids. But it sounds like you have a system that is working really well.



This is what I was curious about and if you have ever done a morning blood test for ACTH (without taking any HC that morning) and if your ACTH level was normal? I don't mean the ACTH Stim test vs. just a regular blood test for ACTH that you would do at Quest or LabCorp?

I am doing my labs tomorrow morning at Quest for my Endo to monitor where my ACTH & Cortisol levels are now that I have been taking 10 mg of HC (Cortef) per day.



No worries! Do you know if adrenal support supplements would help if the root problem is pituitary suppression of ACTH (as it appears to be in my case)?

Thanks for sharing. I have a few questions.

What is your timing with the HC intake? Do you take all of it in the morning?
Also, have you noticed any bad effects (e.g. mental health, weight, hair, skin, etc.)?

 

[Learner1]

Thanks for sharing. I have a few questions.

What is your timing with the HC intake? Do you take all of it in the morning?
Also, have you noticed any bad effects (e.g. mental health, weight, hair, skin, etc.)?

I've been on hydrocortisone for 5 years. It causes weight gain when I take more than I need, weight loss as I reduce dose.

 

[mitoMAN]

I've been on hydrocortisone for 5 years. It causes weight gain when I take more than I need, weight loss as I reduce dose.

If I understood correctly you take 10mg split into 2x5mg= morning and afternoon?
About how many hours in between?

 

[Learner1]

If I understood correctly you take 10mg split into 2x5mg= morning and afternoon?
About how many hours in between?

When I was on 10mg, I took 5mg at 10am and at 2pm. My early morning cortisol was always ok, then dropped mid morning. If it were low first thing in the morning, I would have taken upon waking, and probably divided it into 3 doses.

 

[mitoMAN]

My morning cortisol is extremly low while it recovers up to late evening-midnight showed the 24hours salvia test.
Single blood tests showed I had close to zero cortisol between 8am-1pm. (When tests were done).
But ACTH Test showed my adrenal reaction is "normal" when giving exogenous ACTH.

Im started on hydrocortisol 5mg today upon waking and noticed it got me to keep my eyes open (but not enough to stand up - I am 20 hours bedbound and can only stand up at night when my cortisol is high).

From what I read up to 15mg daily is considered safe for adrenal supression (when adrenal fatigue exists) by most ME/CFS doctors.

Would you rather split it up into three dosages in my case? Like 5-5-5 or 7.5-7.5 ? I probably will have to try it myself.

 

[Learner1]

My morning cortisol is extremly low while it recovers up to late evening-midnight showed the 24hours salvia test.
Single blood tests showed I had close to zero cortisol between 8am-1pm. (When tests were done).
But ACTH Test showed my adrenal reaction is "normal" when giving exogenous ACTH.

Im started on hydrocortisol 5mg today upon waking and noticed it got me to keep my eyes open (but not enough to stand up - I am 20 hours bedbound and can only stand up at night when my cortisol is high).

From what I read up to 15mg daily is considered safe for adrenal supression (when adrenal fatigue exists) by most ME/CFS doctors.

Would you rather split it up into three dosages in my case? Like 5-5-5 or 7.5-7.5 ? I probably will have to try it myself.

I've taken as much as 30mg, divided into 3 doses. 25-30mg is considered a replacement dose. I've also taken lower doses in 3 smaller doses.

If I were in your situation, I'd take it at maybe 730-8am, 11-1130am and 2-3pm. That allows for a downhill curve toward bedtime.

I spent a lot of time trying to figure out what stage of adrenal fatigue I was in, etc, and my labs didn't seem to match anything. I've heard adrenal fatigue isn't really a thing anyway. What did matter was that I was in a heap on the floor if I didn't have hydrocortisone.

I did an ACTH stimulation test which the endocrinologist pronounced normal, but did not rise adequately according to what I found online and my ME/CFS specialist agreed. I found out what the endocrinologist meant was that I didn't have full blown Addison's, but I did have adrenal insufficiency.

As I've improved, by treating other things, I've been able to gradually decrease my hydrocortisone.

Good luck!

 

[thingsvarious]

I've taken as much as 30mg, divided into 3 doses. 25-30mg is considered a replacement dose. I've also taken lower doses in 3 smaller doses.

If I were in your situation, I'd take it at maybe 730-8am, 11-1130am and 2-3pm. That allows for a downhill curve toward bedtime.

I spent a lot of time trying to figure out what stage of adrenal fatigue I was in, etc, and my labs didn't seem to match anything. I've heard adrenal fatigue isn't really a thing anyway. What did matter was that I was in a heap on the floor if I didn't have hydrocortisone.

I did an ACTH stimulation test which the endocrinologist pronounced normal, but did not rise adequately according to what I found online and my ME/CFS specialist agreed. I found out what the endocrinologist meant was that I didn't have full blown Addison's, but I did have adrenal insufficiency.

As I've improved, by treating other things, I've been able to gradually decrease my hydrocortisone.

Good luck!

Thanks for sharing!

Yes, unfortunately, most endocrinologists do not see the "greyish in-between area" between AI and "completely perfectly adrenally sufficient". In the same way other hormones differ between individuals (and also over time in a single individual) so do glucocorticoid levels