This seems like a very knowledgeable group about hydrocortisone. I have been taking 30mg per day in divided doses (10, 10, 5, 5mg) for adrenal insufficiency that wasn't this time responding to 20mg without dizziness still. I've been on this for 10 months and it seems clear I don't need this because I'm gaining weight around my stomach and face. I'd like to ask if a reduction of 2.5-5mg every two weeks is reasonable? For the past 3 days I've taken the second 10mg dose down to 7.5, and I feel fine.
Any advice would be gratefully received.
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Ldoc80
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Well, it rather depends if your adrenals are capable of producing sufficient cortisol. And it's my understanding that if you have adrenal insufficiency, they're never likely to be capable again. Plus, as you have been taking it throughout the day, they may have shut down altogether, in which case they won't start working again.
With adrenal fatigue, which is what I had, you only take HC in the morning, and then you can eventually wean off the HC. But Adrenal Insufficiency is not like that. And 10 months is only a very short time to be taking it. Would your adrenals be sufficiently recovered - if they can recover - to do without the HC?
So, the only thing you can do is try it and see how well you go. Do you get frequent blood tests for your cortisol levels? It does need careful monitoring.
Thank you very much! I think my language is off. I was treating according to symptoms. I wasn't receiving care or blood tests. But I am going to get an appointment. I have only reduced by 2.5mg, and I am doing fine. But I guess the crunch is going 20-25mg to see whether mine are still going to do their job. Thanks again.
OK, but I don't think you can do that with adrenals/Hydrocortisone. It's not like thyroid and levo. Taking HC thoughout the day as you have been doing tends to shut the adrenals down, and once they've shut down they rarely start working again. If one hopes to be able to wean off it one day it should never be taken after 1 pm. The adrenals need to be left to do some of the work. HC just takes some of the load off them in the morning, their busiest time. HC is not something to be self-treating with.
I am waiting to see if my cortisol improves on my current dose but it’s been low for a long while now (203) and I don’t have Addisons as I’ve been tested so maybe my next step in the future is speaking to endo about HC.
I stopped taking it years ago when my cortisol levels improved.
Be very careful if you want your endo to prescribe HC. They tend to think that it needs to be taken all day to mimic the action of the adrenals. If you take it throughout the whole day then your adrenals will shut down, and if they shut down they won't start working again. According to the doctor that prescribed it for me, if you don't have Addison's you don't need to take it all day, just early morning when the cortisol is supposed to be at its highest, just to lend a helping hand to struggling adrenals and give them a rest. Possibly another dose before lunch if necessary. But never after 1 pm. The adrenals need to be left to work for themselves for some part of the day.
Denny39 Just looked back at a couple of your older posts.
When you had previous cortisol blood tests (not saliva) done, and when you had your SST done, had you followed the guidelines in terms of not taking any steroids (inhalers, nasal sprays, tablets, creams etc) prior to the test that day (and ideally the evening before), stopping biotin, avoiding ashwagandha, liquorice and grapefruit (for females, would also involve stopping HRT and OCP for 6 weeks beforehand)?
For the cortisol blood tests, were they done 8-9am?
What time was the initial blood draw of the SST?
Prior to your cortisol going low, had you taken steroids or opioids for more than a few weeks?
I think it was humanbean that asked about the ACTH blood test. If you still haven't had one of those, that's a pity (the NHS seems to avoid doing them just before the SST which is when they are best done, presumably as a probably ill-conceived cost-cutting measure). If you have had one done since, what was the result?
You mentioned in one of your posts about pigmentation of your eyelids. If you still have that, or unusual pigmentation anywhere else (usually in folds of skin, sometimes in gums), have you compared against pictures of those with Addison's (there are plenty online)? Although the SST results that you posted showed an adequate cortisol response to synthetic ACTH, that doesn't rule out a cyclic-ACTH producing condition (where the ACTH level goes up and down). That isn't the same as Addison's, but could result in pigmentation in the same way (as it is high ACTH that generates skin pigmentation in people with Addison's).
What doses/schedule are you on for hydrocortisone?
Yes no steroids or any other meds, I’m only on thyroid meds T4 and T3 and vitamins. I take b12 complex and stopped in enough time .
yes the cortisol tests were all done between 8-9am and I’ve had a second synacthen test done on NHS just recently as first one a few years ago was private. The NHS results was
08.42am - 242
10.16am - 658
I believe ACTH is known as a synacthen test?
My blood cortisol at diagnosis before any meds was 231 which is low and it always stays around that level now, and I often think is this the last piece of my puzzle to getting well.
I was having symptoms and living on adrenaline for 18 years before diagnosis so I often wonder what that has done to my adrenal glands but with normal synacthen tests then is it only adrenaline fatigue.
Meds were wrongly stopped a few years ago after being started and left on 25 T4 for 6/7 months leaving me extremely hypo and in a bad way and if wasn’t for an amazing lady on this group helping me I would have been 6 foot under. Again, what effect did that have on my adrenaline glands.
The Short Synacthen Test (SST) is a test of what happens when the patient gets injected with ACTH to stimulate the adrenal glands to produce cortisol (amongst other things).
[The above document is useful for anyone who needs tests done by any endocrine department in the UK (and possibly elsewhere).]
Note when doing the SST that many doctors don't perform all of it. They will measure cortisol output but not ACTH. It is important to do this because just measuring cortisol can only produce a result for diagnosing Primary Adrenal Insufficiency (if the patient has it). But if ACTH is not measured it is impossible for a doctor to diagnose Secondary Adrenal Insufficiency (if the patient has it).
The different types of Adrenal Insufficiency are described here, along with their causes :
The SST is useful obviously, but it doesn't tell you what your adrenals would do if they were not stimulated with injections of ACTH or tetracosactide.
Your cortisol level at 08.42 (pre-stimulation) was extremely low. But the fact that stimulation with ACTH (or an artificial version of it called tetracosactide) made your cortisol rise quite dramatically by 10.16 means that your adrenals are perfectly capable of producing cortisol. But for some reason your ACTH is not sufficiently stimulating your adrenal glands. This makes me wonder what your cortisol levels would be if you'd had a blood test of your cortisol levels without stimulation at 10.16. How would it compare to the level produced during the SST after injection with ACTH.
Have you ever done a saliva cortisol test?
It might be worth doing. It will give you an idea of what your cortisol levels would be without interference. Under normal circumstances your adrenal glands aren't getting artificial stimulation and that is the important test - can your adrenal glands produce sufficient cortisol under normal circumstances?
Please note that cortisol levels in blood are not the same as cortisol levels in saliva. In blood the cortisol is partly Free Cortisol i.e. active and available for use by the body, but the vast majority of it is bound with transport proteins (Transcortin) and albumin. Bound Cortisol (i.e. inactive cortisol) could be thought of as "Total Cortisol".
Cortisol levels in saliva are not bound to anything (i.e. they are Free Cortisol) and are therefore available for use without having to be split from transport proteins.
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I seem to have made a confusing mess of that explanation. I hope you get what I'm trying to explain!
greygoose There are three forms of adrenal insufficiency:
Primary (a.k.a. Addison's Disease) is normally considered to be for-life. There have been a few cases where people claim to have recovered, but so few that personally I suspect that they were misdiagnosed in the first place.
Secondary (caused by pituitary problems). If the original cause is addressed (e.g. by surgery) so that ACTH production recovers, then there can be a possibility of recovering from secondary adrenal insufficiency subject to the adrenals not having atrophied beforehand.
Tertiary (typically caused by steroids or opioids). If the steroids, opioids etc are no longer required (or changed to a lower dose and/or lower potency), and if the adrenals have not atrophied, then there is a chance of recovering from tertiary adrenal insufficiency.
Tapering hydrocortisone (or alternatives such as prednisolone) should not be considered unless there is a chance of recovery, so not in the case of primary, and only for secondary/tertiary if the causes have been addressed first. Even then, it's best to repeat testing first (including what in the UK is called a Short Synacthen Test), after which if the results look ok then tapering may be attempted very carefully. Personally, I think it very wise to have regular monitoring whilst doing so (I do blood tests every 6 weeks).
Advice heard in the context of adrenal fatigue can be dangerous in the context of adrenal insufficiency, including only taking hydrocortisone in the morning. Hydrocortisone has a short plasma half-life, so anybody with adrenal insufficiency only taking it in the morning may become dangerously low on cortisol later in the day and may go into potentially fatal adrenal crisis.
I'm not talking about adrenal insufficiency. I never talk about adrenal insufficiency because I haven't experienced it. On the other hand, I have had adrenal fatigue - diagnosed by a hormone specialist who also explained the whys and wherefores to me. He prescribed HC for me to be taken in the morning only, saying that it was to give my adrenals a helping hand during their busiest time. The rest of the day they should be left to work for themselves to stop them shutting down completely. And it worked. I was able to wean off HC and my adrenals are much better now.
I did already know all that you've said above but adrenal insufficiency and adrenal fatigue are two different things, with different causes. The problem often is that people use the two names as interchangeable. And I have been guilty of that myself in the past. I'm more careful about that now.
This is my experience with hydrocortisone. I took 20mg per day in 2 divided doses (am and pm) for many years for adrenal fatigue and an underactive thyroid (chronic fatigue syndrome). I was diagnosed on the basis of symptoms by a private functional doctor. I am also on ERFA thyroid. The Dr wanted me to come off it and I eventually did by very gradually reducing by a small amount EVERY OTHER DAY. I found it difficult to reduce daily and but I am now off it.
Ldoc80 For adrenal insufficiency questions, there are specific forums available. A very active, free, one is on Facebook at facebook.com/groups/1759489...
What is the cause of your adrenal insufficiency? Is it primary, secondary or tertiary?
What time do you take your last dose of HC? As long as you don't wake up during the night low on cortisol, you should aim to not take your last dose later than 6pm (some people find they need a late night dose to last through the night, but it can impact the metabolism).
The safe answer is that you should consult with your endocrinologist before changing doses. In practice, many patients adjust their dosing according to symptoms. If you are showing signs of too much cortisol, by developing symptoms of Cushing's, then the rate at which tapering can be done without significant risk (there is always some risk) depends on whether you are on a supraphysiologic daily dose. That level varies from person to person. The ESE guidelines say the range for the physiological equivalent daily dose is 15-25mg of HC per day (but not everybody is in that range), so supraphysiologic is anything above that range. It's heavy on medical terminology, but you might find it useful/interesting to read academic.oup.com/ejendo/art... . It is for managing steroid-induced adrenal insufficiency, but gives some useful guidelines about tapering. The table in that document provides tapering rates in terms of prednisone, but also shows how to convert to rates for hydrocortisone.
1) AM 8.2 (7-30 range) 5% through the range [Optimal is 30}
2) noon 3.1 (2.1-14) 8.4% through the range [Optimal is 11.025]
3) Evening 1.3 (1.5-8)Under range [Optimal is 4.75]
4) night 1.2 (0.33-7) 13.04% through the range [Optimal is 0.33]
.
Dhea - 136 (106-300) 15.46% through the range
I don't know a lot about DHEA so you might want to research it yourself. I can really only say the following :
1) Don't confuse DHEA with DHEA-S. They are not the same.
2) Theoretically DHEA is banned in the UK for some bizarre reason but it is available in the USA over the counter. It used to be available without prescription in the UK as well but the ban came into force in roughly 2007 or 2008. I think the government got DHEA confused with anabolic steroids but I'm not certain whether there is any merit in that idea or is just me that has got confused.
You won't find DHEA on Amazon UK or Ebay UK. People do buy it online from websites selling supplements in other countries. It might be confiscated by customs but I haven't heard of anyone having that problem in real life. And I don't know how helpful DHEA products are anyway, I've never taken it myself.
3) I have noticed that people quoting DHEA results (not all saliva tests include a test for DHEA) and cortisol results almost always have low DHEA results when cortisol is low and high in range DHEA when cortisol results are high. I have also seen results where the patient has several DHEA results over time and if DHEA reduces over time it usually leads to cortisol reducing too.
4) DHEA naturally reduces with age.
5) I have this very old link that might be helpful - I read it years ago but have forgotten almost all of it.
All of your cortisol results are very low compared to the optimal levels.
If I hadn't seen your blood cortisol result from 10.16 above I would have thought you almost certainly had Primary Adrenal Insufficiency. But combined with your saliva cortisol results I would now think you had Secondary Adrenal Insufficiency.
There has been another member who had similar results to you i.e. good levels of cortisol in the blood first thing in the morning, but poor levels of cortisol in saliva.
Cortisol in blood is attached to transport proteins - Transcortin and Albumin - and is not active i.e. it cannot enter cells to do its job..
Cortisol in saliva is not attached to anything and is active i.e. it can enter cells to do its job.
Most of the cortisol in the body is inactive.
In order to get better levels of cortisol in saliva, i.e. active cortisol, your body needs to be better at splitting cortisol from its transport proteins. I found it impossible to find an official article or research paper on how to split hormones from their transport proteins but one member with the same problem as you managed it unexpectedly. She started taking T3 in addition to Levo, and suddenly her saliva cortisol shot up to normal.
That member was McPammy . You can read her posts and replies here :
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