Adrenal deficient : I had a test to check if my... - PMRGCAuk

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Adrenal deficient

patrees profile image

I had a test to check if my adrenals were working. It just took half an hour.

Few days later I had a telephone call to say they needed to see me and my husband. My adrenal levels were very low.

It was a daunting hour while we were both instructed how to cope with an adrenal failure episode.

I came away with 5 needles, 5 phials of hydrocortisone and 5 syringes. And a prescription for more if needed !!

I was quite shocked to go from hoping I could start reducing to having to double up if unwell and injecting myself if really unwell and then I have to dial 999 for an ambulance.

I sorted out my emergency kit. I have to carry it at all times. I then decided to get on with my life . Happy days 😳😳

59 Replies

A wise decision after a nasty shock. I'm actually very impressed with your doctor for looking after you so well. You have the equipment and the knowledge to use it should you need to which must be very reassuring. I wish you well ..... and I hope that package gathers dust. 🙂

patrees profile image
patrees in reply to 123-go

Thank you for such lovely words. I do indeed have a very caring rheumatologist. She has also arranged for me to have physio as I am very stiff. I am indeed very fortunate 😊

123-go profile image
123-go in reply to patrees

That’s great news! You’ll be a new woman 🏃🏻‍♀️.

PMRpro profile image
PMRproAmbassador

What dose of pred are you on?

But I'm impressed you have a doctor who is aware of the possibility and checked.

jinasc profile image
jinasc in reply to PMRpro

Me too, very impressed...............

patrees profile image
patrees in reply to PMRpro

I have been on 5mg for possibly a year. Tried to reduce carefully but had to return to 5mg so was advised to stay on that dose for the time being.

Maltesemama profile image
Maltesemama in reply to patrees

I too have non functioning adrenal glands from too much prednisone over time. My Doc has put me on 5 mg a day for forever to counteract the lack of adrenal function. East bruising is an icky side effect. I’m old so having long sleeves is my norm. PS. Without the 5 mg my blood pressure slips to below 100. With the 5 I’m good. I wish you well. It’s probably different for each of us. Good luck Patrees and all of us

Bobbury profile image
Bobbury in reply to PMRpro

Me too! I wished my doctor was that good. I just about manage to get a phone call 3 days later if I'm lucky. Plus now, they want a pay rise and if they don't get there're thinking of going on strike!!! Really, wake up and smell the coffee!!! That's my rant over for the day.

PMRpro profile image
PMRproAmbassador in reply to Bobbury

Might you not have felt like striking if your salary was now about a third less in real terms than it was 10 years ago? Usually though they don't "strike" - they "work to rule", sticking to their contracted hours and not working the unpaid overtime that is what keeps the departments running. We don't expect most workers outside the NHS and other emergency services to put their lives on the line and work on at the end of a 12 hour shift without pay - so why should they?

borednow profile image
borednow in reply to PMRpro

Hospital doctors do, indeed, put in horrendous hours and deserve much more appreciation (and money). I think Bobbury is referring to her GP. That's a whole different story ..........................

PMRpro profile image
PMRproAmbassador in reply to borednow

They may not be that accessible currently - but they also put in 12 hour days if they work full time, And their pay scales are on totally different bases. There are bad apples in every barrel - and I suspect the majority of GPs are still pretty good.

Bobbury profile image
Bobbury in reply to PMRpro

Don't mis understand I'm referring to GP's. I have every sympathy and support to those who work in hospitals including doctors. My son's girl friend is a ward manager and I know the long hour she works. 4 on 4 off 12 hours straight and then nights. I don't know how she does it. Those are the people I support and yes I would be aggrieved if my salary was a third less and yes I would go on strike. BUT not GP's. In my opinion they are more than compensated in their pay!

Purplegloss profile image
Purplegloss in reply to Bobbury

Will we notice the difference as they are pretty much absent anyway!!

Bobbury I know you're frustrated but surgeries and hospitals are so undermanned because their pay and conditions are so bad in this country. If you haven't already read 'This is going to hurt' by Adam Kay, then I suggest you do. GPs probably have a better time than those working in hospitals but they are still understaffed as surgeries don't have the finances to employ more doctors and staff. I recently had a flare-up and phoned a private hospital to try and get a blood test...they called me back 8 days later! Meanwhile I managed, at 4.00pm, to speak to a local GP and they got me in the next day for a blood test. If you're living in London, seeing a GP is not easy but I've found that outside London its a lot easier.

I was only referring to GP's. I know what I know and have experienced the inabilities of GP's not bothering or caring to do their job properly. Most practices are owned by large companies and you have to ask the question why. It's because they are money making machine. Why else would these companies own practices if there was no money to be made? Sorry my opinion will not alter.

Please Bobbury, don't apologise you have the absolute right to voice your opinion. Everyone has different experiences. I was surprised that you say that practices are owned by large companies. I realise they have sales men bringing new drugs onto the market that they want the GPs to use but I wasn't aware that GP's were 'owned' by anyone other than the NHS and us as we are the tax-paying contributors. I'm sorry you've had a bad time with your GP. My GPs have misdiagnosed me three times - including for these diseases - nothing is perfect. But, if you have time, please read that book I recommended as it's funny, sad and gives a great insight into what goes on behind the scenes. Wishing you well!

PMRpro profile image
PMRproAmbassador in reply to Photojournalist

GP practices have never been owned by the NHS - they have always been run as small businesses from the inception of the NHS>

bmj.com/content/373/bmj.n1026

keepournhspublic.com/but-ar...

The situation at present is that the large US company buying into the system may be the largest single provider of GP services in the UK - but they are not yet the majority provider.

Now that is worrying! Thanks for bringing it to my attention. But even so, please don't blame the GPs who have studied for 7 years of their lives in order to help you. It's the people 'at the top' I'm far more concerned about...but ever since the last election I've been concerned, after all were those candidates the best that this country can offer? Sorry let's not go down that road...thanks again for sending me the links...I'm sending them out!

PMRpro profile image
PMRproAmbassador in reply to Photojournalist

Good lord - I'm not going to do that, I was at medical school and have a LOT of medic friends and former colleagues. I'm as disgusted about what is being done as you!

Thanks for your kind response. I will read the book, best wishes

vlrdngh profile image
vlrdngh in reply to PMRpro

Hi pmrpro I’ve been on pred for a good few years now rheumatologist is completely in interested and told me I cannot test my adrenals until I’m down to 3 mgs I’ve been on 4.5 and 4 for a few months now but have a lot of pain in my shoulders and wrists. Can I ask for this test at 4.5 mgs.?????

PMRpro profile image
PMRproAmbassador in reply to vlrdngh

You can ask but whether it is worth it is another matter. Down to about 3mg pred your adrenal function is likely to be blunted but not because the adrenal glands are not working but because the presence of pred means they aren't needed. And that is all the synacthen test can show, not whether they are actually functioning normally which they can't/won't be until the pred dose is low enough.

vlrdngh profile image
vlrdngh in reply to PMRpro

Thank you for your reply I just thot that the other woman got a test when she was at 5 mg thanks

PMRpro profile image
PMRproAmbassador in reply to vlrdngh

It depends on the doctor - and SheffieldJane had a test at 5mg that showed insufficiency but when she was retested at 3mg her adrenal function was improved. It requires a hospital day clinic appointment - GP don't usually do it at the surgery anyway. An easier option is to ask if your GP will check basal cortisol, sample taken in the morning between 9 and 11am is fine. If the cortisol is below 100 it suggest adrenal insufficiency, above 350 (I think it is) is suggesting normal function, inbetween is equivocal and justifies a synacthen test. But if you are on too much pred it still won't tell you anything,

So interesting on how things can and sometimes happen if the adrenals do not kick in properly. I am sorry that yours are a problem but you seem to have such good advice from your rhume and also with the help of your husband. I am not to that level yet but I realise this can happen. Thanks for sharing and I know the forum will also help you through this but you are positive and your posting will help us all. Keep us informed how you progress. All the best.

Thank you

Thank you for sharing this reminder that we all need to pay attention to this possibility when we get towards 5 mgs. I still have my emergency pack from the last time it happened with PMR. I was subsequently diagnosed with GCA/LVV so goodness knows if my Adrenal system can recover again.

Thank you for this post, as I am hovering around the 5mg dose it is a timely reminder to me to stay observant and assume nothing.

Bcol profile image
Bcol in reply to Bcol

I'll reply to my own comment with a post about my own lack of sense, forethought and complacency. I've been fairly busy the last few days, for various reasons and was feeling what I assumed was just normal tired on Sunday afternoon, as 4:00pm approached it felt as if someone just turned me off and I crashed. I ran out of "spoons". I got to bed and slept until 04:00 the next morning. I feel OK now but will be spending the next few days being a lot less busy and a lot more mindful of possible consequences and where I am with our "delightful" ailment.

PMRpro profile image
PMRproAmbassador in reply to Bcol

That is the major sort of fatigue that I develop - suddenly crash, can't move, feel sick and have to go to bed and sleep. Sometimes a couple of hours is enough - and then I can sit down to dinner ...

I think it is listed in the Fatigues post I refer to:

healthunlocked.com/pmrgcauk......

Bcol profile image
Bcol in reply to PMRpro

Yey, I've been lucky, first time it's happened to me to that extent.

Poppy_the_cat profile image
Poppy_the_cat in reply to PMRpro

Hello PMRPro,

I've just read your reply...which contained...

"That is the major sort of fatigue that I develop - suddenly crash, can't move, feel sick and have to go to bed and sleep”.

My brother picked up Covid Easter 2019.

And was very ill with it.

Then 2020 January he went down with Bell's Palsy, which I am told is related to Shingles, which all makes sense, with the terrible pain he experienced in his ear and neck...and even his eye.

It seems Liverpool University is now considering Bell's Palsy to form part of Long Covid and is indeed carrying out intense investigation into the topic.

Six months on and he is far from right.

Now as I write, he has gone back to bed.

He awoke this morning feeling so terribly dizzy, he had to cling to the bannister to go along the landing to make it to the bathroom without pitching over! At 6' if he were to fall over I certainly could not manage to do anything to help him. Since having had the vaccines he's had a particularly atrocious sense of 'balance'. Indeed, we all three have and it's never left us..??

He is feeling very nauseous at the moment too...

It's terribly difficult to deal with when he has always been such a super fit and healthy cyclist, he's never been unwell, apart from botulism from a Chicken sandwich bought at Gatwick airport 20 years ago!!

Is it possible that adrenal fatigue/insufficiency, which can occur for many reasons, might also be an off shoot/ connected to this Covid virus? Have you come across similar examples?

Of course when I mentioned cortisol levels to my ineffectual GP, for my own part, he laughed at me scornfully and denied any such thing existed. At that point I totally switched off. Thankfully I have since found a superior doctor who understands the role of cortisol with regard to menopause!

But add to it all the fact that with men it's very difficult to even get them to seek help in the first place and secondly our current situation which makes seeing a doctor virtually impossible, I am feeling very distressed!

I am beginning to wonder if 'interrupted' adrenal function is also an off shoot/ casualty of this virus.... And should my brother have an adrenal cortisol test?

Any thoughts on your part would be much appreciated.

Many thanks,

Poppy the 🐱

PMRpro profile image
PMRproAmbassador in reply to Poppy_the_cat

" he laughed at me scornfully and denied any such thing existed" - and how exactly does he define adrenal insufficiency? Which is a real condition and eventually results in Addison's disease.

I don't know to be honest - but you have also to remember that Covid is a serious systemic disorder and can have affected all sorts of things. And it can take a long time to recover from any such illness with even relatively small expenditures of energy resulting in near collapse. Just the loss of muscle bulk after a few days in bed can take months to recover even without a serious illness in play.

Have you considered a personal alarm for him so that if he falls he is in a position to call for help - you too if it comes to that. Here I can call 112, our equivalent of 999, but we now have a direct line monitor for my husband so I don't have to go via the call centre and they have a key too so they can get in even if I'm out. It takes a load off your mind believe me. You can get them short term too I think,

Thanks for sharing this as I had no idea that this sort of support was available. As I have been on prednisone for 4yrs and am still on 8mgs I may well find myself in the same boat. Now I feel well armed! Well at least all the challenges we face keep the brain ticking over 😅

I’m so glad you have such an interested rheumatologist. After my diagnosis I pretty much had to research my way around it & had to ask for an emergency kit from the GP & then ask again for a demo. All that information is on the Addisons.org website but I had to find it. Look after yourself & like me I expect your kit will stay in it’s box. Onwards & upwards! X

Goodness that must have been a shock, I think even if we expect it as a possibility. I’m glad you have good support and know what you need to do. Take care

Gosh! Glad you are ok. What are signs for adrenals not working. I don’t know anything about this.

PMRpro profile image
PMRproAmbassador in reply to Uglow

You needn't worry just yet - and the signs are increasing fatigue as you get below about 7mg pred which is the physiological dose - about the equivalent of the amount the body normally makes in the form of cortisol and which is essential for the correct functioning of the body.

Goodness that is a bit upsetting. Hope it works out for you. What mgs were you when you had this checked? Im at 9mgs (again) now. All ahead of me. Hope things will kick start for you with the adrenals. Best of luck.

Hello patrees ,wow what an unexpected event , i hope this gets you up and running again soon. Would you kindly explain the symptoms that you were going through and how long for . And your pred use from start to crisis . This will help others and me understand the process of adrenal deficiency. Thank you .

PMRpro profile image
PMRproAmbassador in reply to Avadip12

You will find a collection of posts about adrenal function and insufficiency in the FAQs

healthunlocked.com/pmrgcauk...

Please do make use of this facility to which a lot of time has been devoted to make it easy to find such information. There is a link to it not only at the top of each set of replies to a post but it is also to be found under the Pinned Posts.

bonio profile image
bonio in reply to PMRpro

wow this is all very scary stuff had no idea about adrenal problems. Was diagnosed April this year, had a flare after tapering too fast on a plan given to me by a GP. Have gone back to 15mg and slowed right down, just dropped to 13mg. This extra news is rather alarming. Guess GP's don't want to overburden you with too much information at the start on the complexities of tapering pred. Really good to know about this and even better to have this site for information and help, what would we do without it? Thanks for sharing this.

PMRpro profile image
PMRproAmbassador in reply to bonio

I don't think the average GP even thinks about it - there are some outstanding ones who do, not denying that.

I don't find any of it scary - knowing about it important but knowledge is power.

patrees profile image
patrees in reply to Avadip12

Hope this helps with some of the queries.

I was diagnosed with GCA/PMR December 2017. Started on 60mg pred gradually reducing over the years. When I got to 5mg about a year ago I was so tired and washed out. Getting upstairs is a struggle.

So eventually my rheumatologist decided I should have a test to see what was going on with my adrenals. My symptoms were extreme tiredness/weakness, low mood and real problems with stairs. Close to getting a stair lift.

I will be seeing a endrocologist soon so hopefully will learn more.

I hope I haven’t alarmed folk with my news. If I have to stay on pred for rest of my days, then that’s ok .

Thank you for all your kind encouraging messages. Stay safe everyone 😎

Avadip12 profile image
Avadip12 in reply to patrees

Thank you

Longtimer profile image
Longtimer in reply to patrees

My Rheumie has already said maybe when I get to 5mg I may have to stay there having taken pred for 10 years...I don`t mind that at all....if I can function, which at 7mg right now I can`t....I have had the cortisol blood test which showed a very low reading of 92...so they didn`t bother with the hospital test with the canula, because it was so low....

I like you am struggling with stairs etc....have been told to be aware of "sick day rules"....taking extra pred if needed, but I am going to ask my GP for the syringes....hoping they can prescribe them.......

Think I am on too high a dose to see an endocrinologist, but wish I knew what to do now...lower or not??..... ....have rung the secretary, but they haven`t got back to me....

How things with staff shortages etc I hate to keep bothering them...

We battle on together!......

Keep us posted...

bonio profile image
bonio in reply to patrees

good luck and thanks for sharing.

Very impressed with your Rheumatologist. I wish you well and hopefully you won’t need use of the kit. I hope you don’t mind me asking but I’m just wondering how long you have been on 5mg, what prompted your Rheumy to carry out the adrenal test and what symptoms were you having at 5mg.? Should everyone with PMR at 5mg have the adrenal test?

Patrees, I’m booked in for a short Synacthen test next month when my taper should be down to 1mg if my adrenals are OK I hope to taper off the preds, here’s hoping!

When I spoke to my Rheumatologist about adrenal function, she told me there shouldn’t be a problem as I reduce because they are always working in the background? I’m on 7.5mg at the moment from 60mg and have struggled with fatigue for a while. When do you need to check for this? Sorry I am now confused, to be honest it doesn’t take much 😊

PMRpro profile image
PMRproAmbassador in reply to Whatawonderfullife

They ARE working in the background - but not producing cortisol. And it can be a lengthy return from their jolly holidays according to some recent work done in Leeds. They do usually come back - but not as fast as a lot of doctors think.

Sometimes I just wonder how much of their physiology lectures sank in!!!

Well I know one thing and that is if I didn’t have you lovely people to speak to and earn from, I would be in a very different place to what I am. I asked about my aches, pains and stiffness, brain fog, extreme fatigue etc asking if this was a flare or withdrawal from reducing. With this I had a shrug of the shoulders and told that it was probably caused by de conditioning, where I haven’t continued with much exercise. Along with the weight gain, I need to eat healthily and reduce my portions.

Mmmm well I have always been conscious of my weight and what I eat. I used to be fit and able to run 10k, 3-4 times a week and was a size 6/8. I then found running extremely challenging along with not feeling well enough to get up in the morning and go to work for the day. I then was diagnosed with GCA and I literally watched my face and body change shape over night.

Surely this can’t just be my fault? I am still extremely careful with what I eat and try to be as active as possible without jeopardising the next day or two with the necessary bed rest.

PMRpro profile image
PMRproAmbassador in reply to Whatawonderfullife

It happens to almost everyone - and she should know that. You say you are very careful about what you eat - but have you cut carbs drastically? Especially processed carbs, added sugar and lmited fruit except berries?

Increasingly, I feel they should all have to experience a few months of chronic autoimmune illness so they have some idea of what we go through.

PMRpro I have tried to cut out as many carbs as I can, I have to admit I find it difficult at times and with the fatigue, I wondered if that was due to the lack of carbs?

I don’t think they have a clue when it comes to living day in day out with this. In fact I get the impression that they think it’s been going on long enough, it should be in remission and I need to get on with reducing and trying to live a more normal life. Being told that my markers are in the normal range and they are what we need to follow. So frustrating!

PMRpro profile image
PMRproAmbassador in reply to Whatawonderfullife

No, the fatigue is part of the autoimmune disorder - the body doesn't need carbs, or at least, not in the volume popular conception suggests!

Ah ok, and why couldn’t the rheumatologist tell me this? Thank you, I understand now x

PMRpro profile image
PMRproAmbassador in reply to Whatawonderfullife

What - about the fatigue? Possibly because he thinks educating the riff-raff is beneath him - he's there to make a diagnosis! Or he knows - and assumes everyone else does too. Though I suspect many have no concept at all what it is like and believe that once the patient is on pred they will feel "normal" again and the "pred gives you wings" boost counteracts it. Which of course it may do but when you turn into the Energizer bunny you end up collapsing in a heap.

I am sorry your adrenals are not functioning as they should. Can you say what specific tests they ran?

patrees profile image
patrees in reply to knoone

Just the synacthen test. It took half an hour.

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