Hi, I havent been on the forum for a while but wondering if anyone can give me some assistance with taking HC please?
I am currently on it and have been for around 5 months. Getting a bit worried about how safe it is but have no doctor back up, dont know where to turn.
Thanks.
Good morning Princesspea,
HC should be taken four times evenly spread out though the day - last tablet no later than about 5:30pm / 6.00pm as it can keep you awake. My private doc said anything up to 20 is a safe dose - above that needs extra caution.
HC can cause symptoms if you are having more than you need (whatever the dose )- so If you start to feel worse, slowly decrease your dose.
Best wishes
Debs
What I've learnt from grey goose is unless you have Addison's take the HC when you need it which is in the mornings.
My doctor prescribed 10mg, I know that's not much but I made the mistake of splitting it into 3 doses, but my lowest level of cortisol was on waking. I wish I'd just taken it in the morning now. It has a half life of about 2 hours. I've had to stop due to high blood pressure, and I'm so aware of how much my body hurts again. I'm seeing a knowledgeable endo in the next few months, if I have no joy I will self medicate. I messed around with my thyroid meds at the same time which didn't help at all. In only 3 weeks of hc and lower meds I've put on 9llbs which is really upsetting.
It's so confusing as there is so much inflicting information. I don't think I have Addisons but I didn't have any of the tests before starting HC as my GP won't play ball, now I wish I had done them privately. It's also been suggested on a forum that I have an adrenal tumour due to high aldosterone AND high renin but who knows. I'm trying to locate a decent endo ASAP who will help but not judge me for self medicating. I thought I'd read fully re HC before starting and I knew what I was getting into, don't get me wrong but now I'm panicking its the wrong thing and I'm doing myself damage. I do/did have low cortisol symptoms and a 24hr saliva test showed very low cortisol throughout the day but go on any addisons Facebook group and they will slate the saliva test so I'm left questioning its validity although common sense to me suggests it at least indicates a problem even if not 100% accurate.
I take 25mcg split into four doses as per sttm. 10 on waking, 7.5 at plus 3 hours, 5 at plus 3 hours and 2.5 at lights out (this actually helps me sleep and under stressful conditions I sometimes have to take 5 at bedtime as if not I wake with 'air hunger' definitely low cortisol related as extra HC resolves it). It's hard to know what's what as I don't yet have my thyroid optimised and I have pernicious anaemia which I'm working on with b12 injections (supplementing the 3 monthly ones from my GP) and coeliac disease which is new so Iv only just gone gluten free. I guess my main worry is what if there is something more than just low cortisol given the Aldo and renin test results and I'm not doing anything about it, but I can't get a doc to help and every time I think right il go and see this endo Iv seen recommended I then see someone saying they have seen them and they are by the book or judgemental on self treating and I don't want to waste my time and money.
I agree it's a minefield. I did two adrenal stress profiles a year apart and my morning cortisol is lower, plus low DHEA was flagged by the lab in the afternoon. I believe the accuracy of the adrenal stress profile, so does the World Health Organisation. Easy for the establishment to poo poo it, probably because they're just not familiar with it. I had to write out the results with ranges before my GP could understand it. There's a lot of info re saliva being more stable than serum in tests and especially good for testing hormones.
I have the possible pituitary tumour scenario too, I had an MRI just over a week ago and waiting for results. All I know is I still have low temps all the rotten hypo symptoms that even a shed load of thyroid meds won't shift.
I had the synacthen test and it was normal. What I didn't know until recently is the synacthen is not a physiological dose, hugely more, so you adrenals would have to be totally on the floor to not have a normal reaction.
I'm on B12 injections and iron for anaemias and the iron did raise my temps for a couple of weeks, not any more though. Nothing makes me feel well.
I did notice once I weaned off hc is the constant coughing and breathlessness is back, that's no coincidence. I'm so weak I regularly faint, I just can't get to the bottom of any of it.
The endo I'm seeing is female and at a Oxford hospital. I'm getting referred via the NHS. She is an expert in adrenal and pituitary issues. I'm travelling 100's of miles, but I'm hoping I may just get somewhere with this. I just hope I don't come home hysterical with frustration like I usually do after hospital appts 
Helcaster, we sound like we are in a very similar boat. You have renewed my belief in the saliva testing, thank you. Mine were about a year apart too and both showed every point to be at the bottom or below the range. Even after the year of doing ct3m and then glandulars there was only a marginal improvement.
Is your GP on side? Just not enough? Will this be the first time you are seeing this endo? I'd love to hear how you get on please? If you could maybe PM me her details also please? I'm desperate to find someone to see.
Hi Princesspea, my first saliva test was total 15.3 for the day, the second was 17, my nighttime cortisol had gone up for some reason. My waking cortisol is well below range at 3, the rest are just outside or at the bottom of the ranges. The interesting things is my DHEA is lower this year too. I bought some decent DHEA pharmaceutical grade, but it gives me diarrhoea.
I think my GP is onside although it's taken me months to persuade her, sending literature from British Endos, and asking to see this endo in Oxford. My hair loss in my armpits and pubic area she said was "aging" but it started in my 40's 10 years ago. She's only seen my armpits when injecting me, and agreed they are completely bald. The pubic area she assumed was sparse, but it's huge bald patches, it's ongoing and i have about 10% left. This is also discussed on the patient leaflet on adrenal insufficiency by British endos. She knows I've had a shed load of steroid treatments too, injections into joints, inhalers, steroid creams over many years, this too is covered on that leaflet. The orthopaedic hospital I went to for years gave steroid injections out like smarties. I even started to refuse them, my shoulder specialist forced me to have the last 3 saying it was a diagnostic tool! I'm very unhappy about this and the number of xrays ordered at what seemed like every appointment. It's all sticking plaster stuff now in medicine. No one has attempted to advise me on how to get my really high levels of inflammation down. I was taken off anti inflams because of the risk of stroke, although I only took them as a last resort very intermittently.
My gp is concerned about the cost of hc, it's now horrific on the NHS. One drug company supplying the UK, same old. I noticed online that prednisolone is much cheaper, and if all else fails I'll self medicate with this.
Have you noticed your thyroid meds don't seem to work?
I'll PM you that endo's name. Xx
Many thanks, I got your PM, thats great, I may well end up there too.
My total cortisol results in April 2013 were 8.83 with a range of 8.2-50.9, with all being just in the bottom of the range, except the night time one which was under. After almost a year of doing CT3M then glandulars they appear to have gotten worse! Total cortisol 15.1 with a range of 21-41 and morning, afternoon and evening being under and noon being just inside the range. DHEA both times was within normal ranges.
I have noticed recently that my leg and armpit hair appears to be growing in more slowly, and i have lost A LOT of my head hair but thats all happened after starting HC (although im not sure I am on the correct doseage) as for my pubic hair, due to weight gain I havent seen that in quite a while!!! lol, but there isnt an issue there. I havent had any steroid treatments but its not down to ageing, im only 34! My GP is one of those with a god complex so even if I go in with research he doesnt even glance at it. I cant change as he is the head GP and appears to monitor what the rest do. I cant move as its the only one I am in the catchment area for although I am at the point of writing a letter of complaint to my PCT telling them I no longer have a relationship with my surgery and that I want to move. They are now blocking me on everything, long story but even small things. I have been laughed at, ridiculed and patronised one too many times to be honest.
I cant get my thyroid meds to any great level before I start feeling hyper, but with hypo symptoms still and a high rt3. So yes they arent really working. Levo didnt relieve all my symptoms despite a relatively high dose, armour I could only get to around 2 grains and I am now on T3 only until I sort out my adrenals but I can still only get to around 50mcg.
I buy HC online if you ever need to go down that route. x
I'll have to reply later Princesspea, just on my way out. The ranges for my adrenal stress test are 22-41 or 21-42, I'll have to check, so you can see I'm well below range. Catch you later! X
Hi princesspea, excuse delay, my cortisol hasn't improved on T3, I tried licorice root, Vit B5, Ginseng you name it! I think if your cortisol is really low these supplements are maybe not enough.
So little seems to be known by GP's and I suspect a lot of Endos about this.
I've just ploughed on getting thyroid meds up, feeling pretty rotten and overmedicated at times, but found these horrible symptoms did settle after 2 weeks. I often joke I could take a bucketful and not feel a benefit! I get weird blood results too, like the thyroid meds are in my blood but not getting anywhere. If I reduce my dose which I have done under instruction from GP's and Endo's I can't function, spend all the time on the sofa feeling terrible. I put on a good deal of weight too
If I self medicate I think I'll get pred, it's longer lasting. HC only has a half life of around 2 hours, I get sick of taking tablets through the day too. I have other prescription drugs for other health problems to fit in and it gets so complicated. X
I get you dear, I am right there with you! According to sttm if your cortisol is low (or high) and/or iron is low then that is exactly what will happen, your thyroid meds will pool and go nowhere. That's why u have backed off thyroid meds just now and settled at 50mcg t3, doing nothing with them even although I know it's not enough, until I get my iron and adrenals sorted out. I saw mention on a group today of 'functional medicine doctors' and wonder if this could be a route to explore. Would need to do more research so as not to waste time and money right enough but one bear me does the first telephone consult for free to make sure she is the right doc for you. She is an MD but like the rest of us has become disillusioned with the nhs and conventional medicine. Ever heard of these type of docs?
I'm a pituitary tumour patient. After surgery in January, I was put on HC. Anyone taking HC will feel "brighter" says my endo, but it's not a drug I wanted to be on long term if I could help it. I had an insulin stress test performed at the hospital and a day curve test. These tests showed my cortisol production to be adequate. I was recommended to wean off the HC. I had to do this slowly, and it was quite a painful process as my body didn't want to wean! However, I'm now off the HC, 2 months now, and am awaiting growth hormone replacement to start next week. Your problem will be not knowing before you started HC if your adrenals were under producing. I'm no expert, just can tell you about my own experience, but if you do decide to try and wean off, do it slowly. I was on 40mcg at one point. I dropped my morning dose by 2.5 every 5-7 days until I was on 10 mcg am. Then I started to reduce afternoon dose in the same way until 10 mcg. The evening dose I tapered and stopped altogether. Finally, I reduced the am and pm down to 2.5 mcg, stopped the pm one and had 2.5 mcg am for a week. Then I was off the HC. This isn't something you should be doing without sensible advice, but it seems your gp is reluctant to run tests on you. Get yourself a new endo ASAP. Sorry for rambling, hope I've not confused you, brain fog, etc lol xx
Thank you for the input Loo, I much appreciate it. My main problem is I don't have an endo, GP refuses a referral as my tests always come back 'normal' for thyroid. I am desperately looking for an endo that will help me and am willing to travel and pay so if you can recommend anyone I would appreciate it. X
Sent u a PM x
Hi Loo how are you doing not heard from you for a while? Seems ages since your op, think last time we "talked " you were making some progress hope it continues? Whats HC? , HUGS ..kim x
Hi Kim, yeah op was January, but still having problems! HC is hydrocortisone. My pituitary op has messed most of my hormones up. I have no growth hormones - yourhormones.info/endocrine... - and am due to start GH injections next week. Endo will then consider adding some T3 after we've seen how the GH reacts. I'm still mostly house bound, no energy, aches and pains, and I'm finding it very frustrating! Fingers crossed the GH helps. How are you doing? Hugs, Laura xx
Oh no! Poor you ots a long slog for you, hope you soon start to feel bit better, inam up and down of its not one thing itscanother! I recall your GP didnt believe uour symptoms and you had to beg for mri hoe did he react when your tumour was found? Lets hope you start to pickmup soon hugs kimbx
I haven't seen that dr since! Will get there in the end, both of us lol xx
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