I managed to purchase the cortisol test kit from the sit that Dorset Lady gave me, I do have one question though, has anybody else used one of these kits as the instructions do say they recommend you to take the test on and empty stomach in the morning which I get, there are seven bottles, I have to do one when I first wake, then 30 minutes later, then 1 hour after waking, then 2 hours, 5 hours, 8 hours and 12 hours, is it ok to eat something after the hour one as it doesn’t say, thank you 🙏
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Josie-Anne
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Not sure to be honest -but imagine the 1st, 2nd and 3rd should be on empty stomach - after that you’re okay. It takes about 1.5 to 2 hours for food to get through system.
If you’re worried about taking meds (any advice on that) you probably could get away with a spoonful of yogurt.
Is there a contact no or chat facility on paperwork to double check?
Got one of these today and same dilemma. Rubbish no help line or chat. I cannot produce enough saliva😢having paid which can ill afford.. I am going to have a black tea aftervthec30 min test
I have the get tested one, as Gp won’t test me. I have appt with her tomorrow I don’t hold out much hope. I want to go back on pred but she won’t have a clue on the dose nor take advice from the specialists GPs have to hand
Hate to be negative but I have done that and I can barely understand the other Drs. I will take my chance with her. Apparently my urgent referral to rheumatica 5 months ago was reviewed again last week at her request and remains downgraded to routine. This zero tolerance msg on every phone from the nhs needs to be two way. There needs to be a robust complaints procedure in my opinion. I can at least talk to her. I had another dr there recently and advised her I had a large basal cell carcinoma on my back which living alone I had not seen but my daughter did. Having had a couple before knowing how they look, I asked the dr to refer me and she declined saying it wasn’t a carcinoma. A complaint to the practice manager had me referred and treated.
Hi, my GP has told me I haven’t got AI? New skill she has - no tests. I have reluctantly gone back from 1 to 5 mg. My hands are somewhat better but got awful carpal tunnel and dropping everything. Been on 5 a week and still in pain and stiffness but not quite as bad. Done this in absence of seeing a specialist for anthinecen test or rheum assessment. 7 months titration blown away but can see its journey most are on. Still so exhausted my life seems on hold. My daughter ordered on line shop last week first ever as to bad to go. Mentally am declining because of the fact life feels unfamiliar.
I also developed peripheral neuropathy last Xmas which I see on some posts can be pred related. Get impression Dr who so badly wanted me off pred now just “ try 5mg” no follow up. Just me making appt 3-4 weeks time from ringing. If she’s not on strike of course
What a mess - but then you know that! So sorry to hear what a struggle you are having.
Hopefully the 5mg will improve things - on many fronts. The fact there is a slight improvement should be viewed as a positive [albeit that you didn’t really want to increase] and another couple of weeks at that dose will get you in a better place.
Please keep us informed how things go for you…and good on your daughter -sensible lady.
An increase to 5mg may put less stress on adrenals for now … but you still need to come down again time. But as slowly as you can - that’s the best way to nudge them into working again.
Just never felt so rough. Cant function. Tried many times over 7 yrs and failed but not as slow as recom on here. Dr gave no advice except 1mg drops. After 7 yrs think deserve acth test
Hi, been back on 5mg for about 10 days, have some improvement in hands and knees but neck and thighs not. Also seem to be having new pains directly on my spine as well as spasm in hips turning me to one side. Could this be pmr or poor posture from pain. If I go for a short walk 30 mins after I am like the mummy again.
I had been stable on 5 mg for a year until I tried to come down and was on one over 7 months. I know people have commented too fast.
I now have a rheumatologist appt in October but like others on here don’t have as much faith in them as users of the forum. I also still have what I and you and others have said is adrenal insufficiency and will be wanting to talk to them about that. I don’t think 5mg is doing enough as I am still just sitting around all day because more of stiffness than pain but some pain too. I wake with severe anxiety ( no cause I can think of except frightened may be dying) after my 5 mg I calm down in an hour or so and as the day progresses I loosen up a bit only to crash again early evening.
I have 2 months before rheumy, do you think I should try a higher dose? I am defo better than when I came on forum but far from being me.
How do they treat AI please. I want to try and arm myself with experienced arguments should my medics not be helpful. I wont be taking mxt as I injected that 15 yrs ago for another auto immune disease and it made me more poorly than the disease. 22.5 mg a week. I nearly lost my job. Any advice appreciated.
Also I want to download and print the titration charts but as a senior IT is not my forte and can’t find them in the forum or on the website
It might be worth trying the flare protocol over the next couple of weeks and see if that help your immediate problems -linked here - but basically adding 5mg to your current dose for up to 14 days to clear out inflammation, then you can drop back down to just above current dose - so 5.5mg or 6mg in your case-
However, not sure issues are PMR related - but worth a punt initially.
Would say your feelings of anxiety are related to adrenals struggling - typical effect. and a/i is treated by steroids, but in a slightly different format to the pred you now take... and is usually spread out over the day rather than in one dose. It might be worth asking rheumy to be referred to an Endocrinologist to help on that side of things.
Hi , thanks for the reply. I have been on 1 mg for about 6 weeks then upped last 10 days to 5 with mild improvement. So if I add flare protocol shouldnt that be 11mg? Sorry if am thick. I have been on the waiting list for endo for 7 months. Had a text last week to say “ login nhs endo appt” logged on message asking if I still wanted an appt. I ticked yes and it logged me out with a message of response noted😣
Right -sorry didn’t realise you were already doing that- if 10days on increased dose hasn’t help that much, have to say not sure it’s all PMR then. You could try another 5 days at 10mg and see if that makes a difference.
Thanks for help, I firmly believe need help self through these type of forums as some medics don’t understand. When I was injecting the mxt and telling Drs thought was being poisoned felt that ill. A senior practice nurse on the rheumy ward told me to have an mxt holiday. For 2 months. I did although scared and I got totally better and drug was making me ill but such high dose
Like an uneducated idiot and my Gp saying the pain is just withdrawal from pred I have been enduring a lot of pain expecting it to get better until I could not bear it any longer with is when I spoke to a lovely lady at the pmr site. I have since learnt that I shouldn’t have been enduring such pain and the cause is pmr to AI. My exhaustion and failing to thrive I believe is AI and backed up by people on here like yourself. I am all 6s and 7s now as I totally have no faith In My GP about his disease and consequences of long term pred. I was never advised about the sick day rules. I have lost both parents in last two years and a counsellor has told me I have trauma and ptsd. This being symptomatic for 10 months, I don’t feel stressed except for pain and loss of l enjoyment in life. My Gp told me to get off the pred whilst all this was happening where all my reading leads me to think I should have been protecting myself even more..
I think am going to try 10mg for 7-10 days and see if it helps. If not I know unlikely pmr. I have waited for this appt for 7 months and won’t get another for god knows how long so want to get Drs supporting me to manage my own reductions, armed with the knowledge off people like yourself about how to deal with emerging pain. I have a string inkling because of my other symptoms AI is a lot of this. I did a saliva cortisol and Shea test paid for by me as Gp refused despite me showing pmr pro msg and nice testing regime. My dhea has come back on the low side and I am awaiting the cortisol test. My Gp said private lab results are not part of the nhs!!! Saving them money trying to be proactive. Hoping my saliva tests are revealing but I was in 1 mg of pred no one told me to stop 24 hrs before🤷🏻♂️. Here’s hoping
Hi this has been suggested but I don’t think it’s an easy option. I want to be armed with rheumy appt about fact refused crp/cortisol plus no tapering regime just get off no attention to life’s events which I had no idea could affect pred consumption and body. Was ignorant I am afraid. The NICe stuff you sent clearly identify what should be done I’d suspect AI and no specialist appt. I have found getting into conflict always ends in poor results. Want to try be nice and say help because of “these reasons” all of which have come from this site and the pmr org..
If I can get my problems under control and feel human I know how to better manage. My anger is being left on pred for 6 yrs unsupervised and me in total ignorance. The original rheumy letter 7 yrs ago suggest once down to 5 go down 1 mg a fortnight or month! I have done it monthly but have ended up like I am. I am 66 and worried I have comorbidity which like everything else my Gp blames on depression and anxiety whilst I feel I have none. My parents have gone, I have dealt with their estate I want to enjoy time I have left but health stopping me.
It’s funny everyone I know is talking about zero help from nhs. The waiting time and follow up is years and people will suffer and some die. My friend had his hi
Replacement cancelled 9 times in 2 years so took a loan and went to Poland for £11k and had new hip in 3 weeks stat to finish consultation to operation.
Got my cortisol saliva test back today but I was on 1mg of pred for a month or more. Morning first 2 hrs are in normal range, 11 and 7 ng/ml,
But rest of day very high. Test says to consult my dr!!
Not sure what this is telling me. Does this mean I haven’t got AI or with pred mask? What about high readings. I did no exercise and ate normally.
I will make an appt but know her reaction will almost be anger at me getting private testing. I have googled high cortisol but don’t “ think” I have Cushing. I am not stressed by anything but my health and pain.
With some of them, being on strike would be a positive!!! I am terrified of coming back to the UK because of medical care - haven't seen much while here to change my mind either!
To some extent she is right that the increase in pred should compensate for the adrenal insufficiency. But she also needs to learn about AI secondary to long term use of steroids.
The information highway humiliates a lot of “professionals” but they don’t need to be worried as there is no comeback against them except a big fat pension
Didn’t know if you knew about this, you can get it off your doctor, maybe see if you can make an appointment with them before doing the test kit and explain to them why your asking for it, good luck 🤞
Unfortunately they are just as bad as it’s all about cost cutting and our practice is bad for that and so many complaints have been put in that they moved another doctor to ours to try and get it into shape but it’s failing and having to wait 4:5 weeks for an appointment whether it’s a face to face or even telephone consultation 🙁
The most important thing is not to have taken pred in the 24 hours before starting the test. I presume this is a salivary test? That is the main reason for doing it fasting I imagine. But for our purposes the most important tests are the first 2 hours.
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