I’ve been taking hydrocortisone for about 3 months via a functional doctor. I’ve just realised I’m on the last strip and wondering if I should be weaning off, and if so how?
I do need to make a review appointment but won’t get one before I run out.
Any help much appreciated thanks!
3 months is not very long to be on it. I was on it for over two years before attempting to come off it. And I wouldn't try if I were you, without getting labs done first. Is there no chance of getting a new prescription - either by emailing your functional doctor or asking your GP?
Thank you. She said it would be short term as she’s also given me liquorice extract and adrenal cortex. I think she likes to treat that way ideally, but the HC was for an initial boost, which I got. However I’m not feeling quite as amazing as I initially felt, possibly as I have a fair amount of stress atm.
When you say labs, do you mean a blood test or saliva cortisol test? I assume the latter would be preferable but I have spent a small fortune recently on labs and consultations and although my husband is very supportive, feel there’s only so much I can push financially!
I had to come clean to my new GP and oh boy did he kick off! He was not happy me being on it, said I’d stop producing it myself amongst other things and half scared the daylights out of me, even though I trust my FD way more than him! It was enough to plant a seed of doubt sadly about the long term consequences and frighten me. The sad fact is the NHS has left me to suffer despite 20 years of insomnia and feeling wiped out, and my FD turned that around in weeks. I hope I get that feeling back fully!
He was not happy me being on it, said I’d stop producing it myself amongst other things and half scared the daylights out of me
Well, depends how you were taking it. If you only take it in the morning, when the adrenals have to work hardest, then that's ok. But, if you try and take it throughout the day, mimicking the adrenals natural output, that's when you risk shutting them down. But what does a GP know about cortisol? lol In my experience, nothing!
The first couple of days I was taking HC I remember I felt amazing! Unfortunately, that didn't last. But, generally, I did feel better than I had before I started it. But it was a long time ago, and I've forgotten most of the details.
But I do remember that I had regular blood tests for cortisol during the time I was on it, so if you could get an early morning serum cortisol test, that would give you a clue as to how things are going - without taking your early morning cortisol that day, of course. We can't get saliva tests here in France.
Forgot to say, HC does not give your adrenals a boost. What it does is lend a helping hand in the morning, when the adrenals have to work hardest. Taking some of the load off them gives them a bit of a rest so that they can regain their strength and start working full-time again. Don't think that's quite the same thing as a boost, is it?
Thank you. It’s useful to hear your initial good result faded too.
I am taking it at 11am and 2pm. Although my early morning cortisol is quite low around 220, I bizarrely don’t feel too bad. My worst is around 230-3pm when I could sleep given the chance! At lunch I take my cortex.
I know my GP definitely won’t give me HC, he was horrified at me being on it lol! I can’t get an appointment with my FD until after I’ve ran out. So just wondering is it ok to stop it dead or should I taper off a bit please?
oh definitely taper off.
Thank you. I’ve got 10 days of tablets left. How should I go about tapering off please? I take half a tablet twice a day.
CornishChick, Ideally you should consult your prescriber for advice on how to wean off the hydrocortisone. But if that's not possible for some reason, please do remember that no-one here is medically qualified. Any advice you receive is just 'patient to patient' suggestions.
Thank you. I have been a member on here for many years and am well aware that nobody here is medically trained. However, I am aware that many do have vast experience in this matter and I very much welcome their opinions, which is why I’m here.
I can’t make an appointment with my practitioner in time as I am caring for my elderly mother who is unwell and unfortunately my tablets will run out before I can schedule something in.
I'm glad you're seeing some improvement in your health (hopefully with sleep, too!) but sorry you are going through a stressful period caring for your mother. Does your doctor do remote consultations? So many do now. Otherwise, an e-mail or phone call to her PA explaining your situation and asking whether she wants you to begin tapering down (and how) or whether she's willing to send a short-term prescription might work.
I really can't advise you on that because yours is not a 'normal' case. People are usually on HC for much longer periods. I just know that it's not a good idea to come off HC cold turkey. It needs to be done slowly. And, I think it's very unprofessional of your endo to have prescribed it and then just abandoned you to get on with it, effectively. He should be either supervising your weaning off, or providing more prescriptions for you to continue. It's a very strange situation.
Thank you. It was my functional doctor who prescribed it. She is very well regarded and has helped many people on here. It isn’t her fault, I can’t make an appointment with her in time as I am caring for my elderly mother, who is unwell and unfortunately my tablets will run out before I can schedule something in. I am fairly keen to come off HC due to the weight gain I have encountered and I am nervous of becoming reliant on it. The initial good effects have worn off a lot, although I do feel better overall than prior to taking HC.
Well, it is her fault, because she should have had the treatment plan worked out in advance so that you didn't find yourself in this situation.
The weight-gain is water-weight. HC is notorious for causing water-retention.
Just taking it twice a day shouldn't make you reliant on it, even though I would question the times she told you to take it. Normally it would be first thing in the morning, and lunchtime, but never after 1 pm. But as it's only been for a short while, you should be alright. 
Thank you for your advice. She did tell me to make an appointment for 6-8 weeks to be fair and I guess wanted to assess how I was doing before planning the next step. I will ask her when I do speak regarding the timings and whether I should be continuing longer term.
That’s useful to hear it’s only water retention, it certainly feels like lard despite no change in diet or exercise pattern!
May I ask if you also have insomnia and if so whether it’s related to your condition. It is the one ailment I struggle to cope with even after 20 years, and am desperate to fix it!
No, insomnia has never been my problem. Quite the opposite. I have trouble waking up and getting out of bed! But they are both opposite ends of the same spectrum...
Cortisol should be highest - top of the range - early morning to wake you up, get you out of bed and started on your day. And it should be lowest late at night so that you can sleep.
The adrenals have a daily quota to reach, and if they can't make their quota early morning, they keep trying all day until they do. And that is very often late at night and stops you sleeping.
People often think that what they need to do is reduce their high cortisol at night but that's not the solution. What needs to be done is raise the cortisol level early in the morning, which will mean that the nighttime cortisol automatically drops.
That is why HC should be taken early morning, and the second dose should never be later than 1 pm. That way you give a helping hand to the adrenals at their busiest time, and they then do not have to spend all day trying to fill their quota of cortisol. And the cortisol level at night will be low enough to allow you to sleep.
That is very informative thank you so much. I will definitely question the timings with my FD. I did take my first dose earlier today and will continue to do that and bring the second dose to 1pm.
I did do a DUTCH upon advice on here. I believe this included a night time cortisol test as my FD was also interested what that was doing in the night. I forgot that she didn’t comment on that and I have no idea how to interpret it. Would you happen to know please? I will ask her at my next appointment too. Thank you.
I don't know anything about the DUTCH test, so I don't know if I would be able to interpret it. But the cortisol should be low in-range in the evening.
Thank you. I will try and have another look myself. It tests during the night too so you can see if your cortisol is actually low or whether it’s too high.
Liquorice extract and adrenal cortex are not the same things as hydrocortisone! Liquorice extract is a supplement that will make the body hold on to cortisol for longer (so can be used in cases of mild adrenal fatigue), and adrenal cortex is not the same thing as HC. Nobody knows how much cortisol (if any) there is in adrenal cortex.
The late Dr. Peatfield recommended trying to titrate off HC after 6 to 8 weeks by decreasing it by 2.5 mg a week, not stopping it cold turkey. But, he also stressed that some patients will need to stay on it for much longer. It really depends on your degree of adrenal fatigue, and how long you have been ill.
Thank you. I am aware that liquorice extract and adrenal cortex are not the same as hydrocortisone! I was just trying to explain all three medications my functional doctor has prescribed in order to help my adrenals/cortisol levels.
Thank you for the Dr P weaning tip which is most helpful. I have had insomnia for 20 years which I am associating with my low cortisol although I maybe wrong. I am not sure of my degree of adrenal fatigue, although have posted three cortisol saliva test results over the years. Thank you.
I am a bit curious why you would need liquorice and ACE when you take HC, as you usually switch to HC when supplements are not enough?
I was feeling so wiped out that I asked my functional doctor if I could have some HC short term to give me a boost whilst the other things kicked in. I’ve had advice from people on here like Tigger Me who’ve had very good results, and I was hoping to follow in their footsteps, and I definitely did feel really good when I started the HC.
When I swapped back from HC (took it for 8-10 months) to cortex I upped the cortex as I reduced the HC for a bit and gradually lowered that over a few months
Thank you very much for the advice. May I ask how you reduced the HC please? By how much and over what period? Thank you, much appreciated.
I was only taking 5mg first thing so I halved it and added 250mg cortex for 2 weeks and then dropped the HC and added a second dose of cortex midday which seemed to smooth the ride after, a month I dropped back to just cortex first thing... if I'm have a stressy day or have a bug (currently second bout of this chesty virus) I add back in another supportive dose
Thank you. I hope you’re feeling better soon.
Is the extra supportive dose cortex not HC?
Yes cortex... I did wonder about taking a little HC to see if it helped moved things along but I'm trying to be patient 🙃
Are you still feeling great or did it taper off a bit like with me?
I've been feeling good since February though these chesty viruses have taken the wind out of my sails at the moment, I'm taking things easy 🤞
Have you got your vitamin D levels up to 100+? I’ve found since I did, and added LDN I have barely been ill since, and if I am, I shake it off in 24 hours.
I keep it around 125, these are the first bugs I've had in years as I generally avoid folk but he's been kindly bringing them back from the office 😕 it's just so boring when I've been enjoying getting on with stuff these last 6 months
Morning CC,
I’m so pleased you are starting to see improvements.
Regarding HC, I’ve never taken it but assuming the dose is very low, if this were me I would half the dose for a few days and then half again. This will extend your medicating time and allow you to taper off over 25-30 days.
I agree with sunflower64 re Dr P’s advice whose initial suggestion was to use HC for only a very short time before tapering off.
Good luck, at least your endo has other supports already in place for you. As others have pointed out these aren’t a replacement for cortisol but can work very effectively in encouraging improved HPA axis function 🤞
Thank you very much, that is really useful. Appreciate your help. 😊
CornishChick
What dose of HC are you taking per day and how is it split across the day?
If you are taking a full replacement dose (typically around 20mg per day under normal circumstances), then 3 months could have been long enough to suppress your system such that stopping could be dangerous. And I include in that 20mg the effect of anything else that you are taking that could be adding further cortisol into your system, including adrenal cortex. Steroids (incl. oral meds, asthma inhalers, even topical ointments) will also make this more involved.
I have yet to see a supplier of adrenal cortex that actually tells you what hormones and what level of hormones (not to mention unintentionally introduced steroids resulting from farming practices) are in their product. As a result, even if a health practitioner (I use the term loosely) recommends its use, I would avoid it. Users don't know what's in it, and hence cannot know how it will affect their system even if they understand how the HPA system operates. Personally, I would be tempted to report any doctor in the UK that tells patients to take it.
Liquorice should also be avoided depending on the reason for low cortisol levels. Liquorice can interact with medications to produce salt-retention in the same way that aldosterone does.
If I were taking that combination, I would stop the liquorice, and wean off the adrenal cortex whilst taking enough HC to make up for it. I would then have an early morning cortisol test done (blood, not saliva) before taking any HC that day (many endo's would say to miss the afternoon dose the day before as well, although that's something that makes patients nervous). Once the result of that is known, it might be necessary to have a SST done as well, before deciding whether or not it's safe to slowly taper off the HC. Simply stopping, unless the dose of HC is very low, is dangerous. Depending on how much you have been taking, dropping 2.5mg every 4-6 weeks might be sensible, but it really depends on how much you have been taking. Tapering off can be unpleasant and comes with risks, but the longer somebody takes a full replacement dose the less likely it will be that tapering off is even possible. Note that for the blood tests, oral contraceptives and HRT can interfere with the result.
I don't often find myself agreeing with GPs (or even many endo's) when it comes to anything adrenal/cortisol/hydrocortisone related, but in this case, your GP was probably correct.
Thank you. I am taking 5mg in the morning and 5mg after lunch of HC. The adrenal cortex says 100mg. I take 8 drops of liquorice extract twice a day.
How does HRT affect the cortisol blood test please? I take Utrogestan and Lenzetto so will be careful when I’m tested.
CornishChick
The question is how much hormone is there in the adrenal cortex. Nobody has ever answered that question. Without knowing the answer, there is going to be guesswork involved in how to wean off of things. If there's the equivalent of 10mg of HC, then you have probably been on a full replacement dose. If it's less than the equivalent of 10mg of HC, then you probably haven't. My guess would be that it's less than the equivalent of 10mg of HC, but I do not know, and AFAIK nobody else does either because the manufacturers don't tell you. Roll on regulation.
If you read the forums for people with a diagnosis of adrenal insufficiency you will quickly discover that even for those people taking a prescribed, maintenance dose of hydrocortisone that replaces what their body fails to produce rather than being extra on top, the side effects are not insignificant. Thinning of the skin, making it tear when you so much as brush against a door handle. Osteopenia/osteoporosis. Loss of teeth. Steroid-induced cataracts. Suppression of the HPA system. Atrophy of the adrenal glands. The list goes on. Without careful monitoring, self-administering HC, even long before generating symptoms of Cushings is not something that should be done lightly, if at all. The same goes for adrenal cortex, but even more so until it is regulated.
Guidance in the Addison's forum is that HRT and oral contraceptive pill should be stopped for 6 weeks before cortisol blood tests.
Thank you. When you say stop HRT prior to a cortisol blood test, is that both oestrogen and progesterone?
How does HRT affect a cortisol blood test? Does it show it as higher or lower than it actually is?
Beyond my level of knowledge. It's probably worth asking in either addisonsdisease.org.uk/ or the "UK Addison’s Disease & AI Info & Support Group" FB group
Regarding liquorice extract, be careful and keep tabs on your blood pressure. I found that liquorice raised my blood pressure a LOT.
Ok thanks for the tip. I’m forever trying to raise mine with Himalayan salt as mine is always low and I feel faint if I don’t eat it! I have a monitor though so will keep a check on it.
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