Second morning cortisol test results still not up to scratch at 313.

[123-go]

To recap, I finished Prednisolone in January this year. Tiredness and irritability 😖led me to mention these symptoms to my consultant at my routine hospital review. Early morning cortisol test reading in July showed a score of 313-up from 240 in April. To obtain this latest score I carried out an e-consult in the NHS app requesting results after receiving no reply to messages left on Rheumy Secretary’s answering machine and subsequently the clinic helpline number. The following morning at 09.10 a doctor rang with the result. Within a day a message in the app informed me of an endocrinology appointment in the last week of October and two days later I received a letter in the post confirming the appointment. Following that a blood test form arrived together with instructions to make a phlebotomy app’t and to take a urine sample along to my endo appointment.

The moral of this story is-if you haven’t already- get the NHS App, link with PATIENTS KNOW BEST (you may need to check with your GP practice that they have allowed/enabled this function) and use it to communicate with your GP and hospital team. I strongly feel that had I not used it I would be still be waiting for results and follow-up appointment.

For anyone interested:patientsknowbest.com/2020/0...

[PMRpro Ambassador]

Is that the basal cortisol level? i.e. without having had a synacthen injection? Either way. if that was mine, I'd take it happily as showing my adrenal function is improving AND they can react if kicked! They do say it can take up to a year to get back to normal after stopping pred altogether so you are on track.

[123-go in reply to PMRpro]

Yes it is. I think she wanted to make sure that is nothing else going on. I understand that I’m on track but symptoms are every day and I frequently need to lie down after breakfast and sleep for an hour and then nap in the pm and fall asleep on sofa every evening. I sleep soundly for 6-7 hours every night.

[DorsetLady PMRGCAuk volunteer]

As PMRpro has said there is improvement - so that's a plus surely. as we know adrenals can take along time to recover after Pred - and maybe age doesnt help either. In fact I think SnazzyD reckoned hers took about 18 months... and she was/is younger than you.

[123-go in reply to DorsetLady]

Absolutely a plus! I understand that adrenals can be slow to recover; I’m trying to be patient but seem to be sleeping my life away 😏. I like to think I’m a fairly young 81. My grandson sent me a birthday card that said on the front, ‘Forever young-ish’ 😂😂😂. Made my day which was spent sleeping in the morning, struggling through the process of showering, etc., having a late lunch out with family and getting over it the next day 🙄.

[DorsetLady PMRGCAuk volunteer in reply to 123-go]

I wasn't implying you weren't young -ish! Honest guv!😊..

Have to do what you can, and enjoy it...

[PMRpro Ambassador in reply to 123-go]

Ah yes, but mental young-ish and endocrinological age are a bit different ...

[123-go in reply to PMRpro]

Ain’t that a fact!

[123-go]

I know you weren’t 😅❤️.

[Grammy80]

I'm happy to hear that you are headed in the right direction. I've never had that test in the States. It wouldn't yield a good result now. Is that a significant jump since only April? I'm glad they are checking further. A great share for those who want to keep track of things. I've only recently acknowledged the age of my body; my mind has always felt so young and active.💞

[Koalajane in reply to Grammy80]

It is strange how we feel younger than we are but our bodies send a different message!

[Grammy80 in reply to Koalajane]

I think part of the secret to getting the best results...is trying to keep that brain young and active. You do great job at that. At this point in my life I try to keep my brain engaged, active and look more outward than inward; that is unless I need a good talking to~!!

Every day is getting better by taking meds early....I might even write a chapter in my long delayed book....not that a publisher is waiting.😂🤣💞

[Koalajane in reply to Grammy80]

Yes you are right. Keep the brain active by doing word puzzles and the such. My short term memory is better than my husbands and he is 2 years younger

[Grammy80 in reply to Koalajane]

Absolutely, I hope that is the last muscle I lose for sure. (but if not, I probably won't realize it~!) My jaw gets plenty of exercise too; and that helps.💞

[Longtimer in reply to Koalajane]

Absolutely, I tell everyone my head dosen't match my body!....they just don't like each other!

[Grammy80 in reply to Longtimer]

....... and that is a good thing, right? Sure is for me.💞

[Longtimer in reply to Grammy80]

Well, I have places I want to go, things to do, even .maybe a short holiday....but not well enough....pain and dreadful fatigue.....I do a lot of daily crosswords etc....I won't give up finding answers to help me feel better....we carry on fighting!

[Grammy80 in reply to Longtimer]

You go girl...we'll all catch-up! We are an army!💞

[Longtimer in reply to Grammy80]

We certainly are! 👍

[123-go in reply to Longtimer]

Same here, Longtimer. One of the things I miss most is being unable to cook for a crowd at Christmas, for example. Happily, I’m told by my offspring that , “You did it for us and now it’s our turn to do it for you.”

[123-go in reply to Grammy80]

I think somewhere around 400 would be preferable, Grammy. I’m sure it will happen but it could get its skates on. It is what it is but I feel it’s out of my control apart from trying not to push too hard physically.

[Hunter134]

It's true about the mind.My dad told me unless you get dementia it never changes.He did say the body does.

[123-go in reply to Hunter134]

My mother, at 90, used to say she would never go to ‘‘those lunches for old people. They have food stains on their clothes that my eyes are drawn to all the time when we’re talking.” I couldn’t hurt her feelings by telling her that she had a tea stain on her blouse 😯. I’m just checking my top…..

[piglette in reply to 123-go]

I do agree with her, I often have the odd stain. My grandmother used to help older people until she discovered the old person she was pushing round in a wheel chair was younger than she was!!

[Grammy80 in reply to 123-go]

I have no shame anymore....I 'bib-up' at a restaurant with a large paper napkin...use straws for everything I drink...if I'm wearing something, that means I like it and who needs to be buying new tops. If you buy because you want it, GREAT...but to replace a stained item, NOPE...I may start taking my own cloth napkin, absorbs the grease better!!🥴🥴💞

[123-go in reply to Grammy80]

You are wonderful! 🤗

[piglette in reply to Grammy80]

I have got to the stage now when I only buy new things if I am throwing out the equivalent. It does make life much easier. I suppose if I were a shopaholic I might get a bit frustrated.

[Grammy80 in reply to piglette]

Spot on!!! I looked at your bio and didn't see your age....but since I'm 84, it is all 'fluff', and I can't see my clothes on any family member....probably hauled to Goodwill!! But fluff is nice sometimes😉😉💞

[piglette]

Mine definitely has. I was much sharper at calculating things when I was thirty or finding the right words etc etc.

[123-go in reply to piglette]

Isn’t it embarrassing when you stop mid-flow because the word you want won’t come and everyone is waiting for you to…to…😂😂

[piglette in reply to 123-go]

Absolutely. It is so frustrating as it is in my brain somewhere!!

[marionofnorwich]

That looks like a good tip. I will explore it especially as I feel that I would benefit from talking to an endo. Currently bobbing around 4/3.5mg. 3.5 was ok for a couple of weeks but then legs got stiff so I guessing my 'inflammation bucket' got full and started to overflow but I often feel that I would benefit from understanding my hormones better

[tangocharlie]

Not heard of that, will look into it, thanks. Re the cortisol, to me that is grounds for optimisim if the figure is rising, I think from experience around 400 is generally regarded as good (it's FAR more complicated than that which is why endocrinologists exist). As far as I know from pprevious discussion on here there is nothing that can hurry the adrenals along in their recovery but a good lifestyle eg eating sleeping exercise and pacing are probably part of the winning forumula. I know you're not one to sit still but rest is not a bad thing! Good you're getting checked out though in case hte fatigue is due to oher causes. If you do find out if there is anything that can help adrenal recovery please let us know as this crops up often. xx

[DorsetLady PMRGCAuk volunteer in reply to tangocharlie]

. If you do find out if there is anything that can help adrenal recovery please let us know as this crops up often.

Doubt it very much - and you have listed what we emphasise …if there was a magic bullet sure we would have heard about it…😊

[tangocharlie in reply to DorsetLady]

You never know though, there might just be an endocrinologist with tips to pass on... Unlikely as they're not used to dealing with medically-induced adrenal problems but ...

[123-go in reply to tangocharlie]

….never say never. 😉

[123-go in reply to tangocharlie]

Yes, definitely optimistic and pleased that numbers have increased but a little impatient seeing as I stopped pred at the beginning of January and symptoms aren’t lessening. I do rest a lot especially after lengthier chores or break them down into shorter chunks and also before and after an event that will involve socialising- uplifting especially when laughter is added. If I discover along the way any magic formula I’ll shout it from the rooftops 😂.

Also, I don’t want anyone reading this who is close to zero pred to be concerned about their own adrenal recovery. No two people have the same experience. I am, in fact, pleased in some respect with where I am but will nevertheless be grateful for the endocrinology appointment for reassurance. Mind you, if I’m told old age is involved I won’t accept responsibility for the nature of my reply!

[piglette in reply to 123-go]

👍👍👍🎊🎊🎊

[tangocharlie in reply to 123-go]

Laughter must be good for getting everything, even adrenals, going!

[123-go in reply to tangocharlie]

I’ll drink to that…one day 🤣😂😂.

[tangocharlie in reply to 123-go]

😆Ha ha. "Well none of us are getting any younger". "You just need to eat less and exercise more". I could play 'Doctor Bingo' just - choose a cliche. Can't find a 'being sarky' emoji so these will have to do 😋

[123-go in reply to tangocharlie]

😂😂. One of the worst ones is, “Well, we ALL get tired!” I feel like replying, “Well, that’s alright then!”

[tangocharlie in reply to 123-go]

A doctor test. A woman aged 60+ comes into the surgery with various ailments that are troubling her. What do you say to her? (More than one answer is possible)

It's probably just stress

It would help you to lose some weight. It's a simple calories deficit thing, eat less move more

it's fibromyalgia

try these antidepressants, they are not just antidepressants they help all sorts of things including pain

your last bloods are normal apart from your cholesterol is a bit high

I recommend statins

Do you smoke?

😆😆😆

[123-go in reply to tangocharlie]

We could win Mastermind specialist subject section, ‘‘Doctors’ fob-offs’’. Sincere apologies to all the doctors out there who are super-duper knowledgable 😌.

[piglette in reply to 123-go]

We could probably write a book even. In fact that might be a good idea and we could then get the royalties. Just gather some of the ridiculous things we have been told!!!

[123-go in reply to piglette]

We could! And get someone to do the illustrations. Fancy a break in the Maldives?

[piglette in reply to 123-go]

Sounds like a rather pleasant idea👍👍👍

[tangocharlie in reply to piglette]

'Ridiculous things doctors trot out' could be the new International Bestseller. Hopefully the next edition of Kate Gilbert's book will include some

[piglette in reply to tangocharlie]

🎊🎊🍹🍹🎂🎂👍👍

[tangocharlie in reply to piglette]

I've just thought of a title for our book, Can you trust your doctor? Or even Don't trust me I'm just a doctor 😀

[piglette in reply to tangocharlie]

I like it. Or Don’t Trust Me, I’m a Doctor!

[tangocharlie]

I've just come across this article about 'adrenal cocktails'. I've no idea of the science behind it but to me it does seem feasible that electrolytes might help stimulate adrenals - I know when I had adrenal problems years ago one of the first tests they did was to check the electrolyte balance. They're basically the rehydration powders you can buy quite cheap over the counter. It also seems plausible that a bit of orange juice, better from an orange not just the juice which is high sugar might help. Potasium you'd get with eletrolytes but maybe some potassium rich foods like raisins or the odd banana might help? I can't see any harm in trying these things so long as you don't go overboard.

aol.co.uk/entertainment/cor...

[DorsetLady PMRGCAuk volunteer in reply to tangocharlie]

Just a comment about potassium rich foods, not a good idea if on some medications, so please check. I found that I had to cut down when my BP meds raised mine a couple of years ago - so bye, bye to bananas…

[piglette in reply to DorsetLady]

Not just people on medications, if you have chronic kidney disease - CKD, it is a good idea to limit potassium too.

[DorsetLady PMRGCAuk volunteer in reply to piglette]

👍

[tangocharlie in reply to piglette]

I was only thinking of the occasional small banana maybe? I find San Peligrino mineral water hits the spot when thirsty and must have all sorts of minerals in it

[piglette in reply to tangocharlie]

I like San Pelligrino but stopped drinking it as it is owned by Nestle. I stopped eating French cheese when they banned British beef and anything South African for some reason at one point.

[tangocharlie in reply to piglette]

Unfortunately it's about the only mineral water I can drink that I don't react to. I can't even drink tap water it has to be Smart water (sadly a coca cola brand) or boiled and cooled water. I haven't read the Ultra processed food books but vaguely heard that most of our 'food' if you can call it that is owned by 3 big brands

[piglette in reply to tangocharlie]

I tend to get Hildon.