Worry of Adrenal function: I don’t know whether... - PMRGCAuk

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Worry of Adrenal function

Suffolklady profile image
84 Replies

I don’t know whether anyone knows anything about the adrenal function but I’m quite worried. I have been reducing Pred over 2 years now and got it down to 5mg last October when I last saw my Rheumatologist. Pain was exceptable at this stage. I told her about my extreme tiredness and general lack of well being she suggested she’d get in touch with an endocrinologist to test me for adrenal function as this might be the reason. When she phoned me a few days later she said the Endocrinologist told her the criteria was to 4mg of pred before a test viable. I have now been on 4mg just short of 2 months not easy but I’ve done it, as I have an appointment on 8th Feb. I had a adrenal blood CRP ESR test etc at my GP last week ready for the consultation. I’m still painfully tired but I am now worried as the nurse from my GP called and said the Doctor had asked her to ring me To let me know my adrenal function was very low and is at 37 he said I would know what to do meaning I suppose I’m due to see the Rheumatologist soon. However this has left me worried as I don’t know what ‘37’ equates to in the adrenal function and have been looking on the internet, like you do, and seen all sorts of worrying causes. Has anyone been in such a position as this or might know more than the little I do? It’s bad enough it’s Pmr but this is an additional worry.

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Suffolklady
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84 Replies
SheffieldJane profile image
SheffieldJane

I don’t understand that figure either. I didn’t know that much could be learned from a regular blood test.

I had a Synacthen Test. I was off Prednisalone for 24 hours. The put a line in my arm and took blood for a baseline figure for Adrenaline. Mine was 293. I was then given a Cortisol stimulating substance which raised it to 430 I think. They would have preferred to see a bigger increase. My daily dose of Pred was 6 mgs. I am seeing an Endocrinologist in February, to ascertain whether there is any other cause for sluggish Adrenal function apart from steroid use for 3 years. My guess is that this situation will gradually right itself once I am off Prednisalone. I have Graves Disease as well ( thyroid). This will complicate the picture a bit.

The treatment for this could well be small dose Pred for life if it doesn’t right itself. They sent me a leaflet about sick day rules. If I am ill or really stressed apparently I will need extra Pred.

I hope I’ve remembered the figures correctly. I just get very tired and have to pace myself, like pretty much everybody else.

Suffolklady profile image
Suffolklady in reply toSheffieldJane

Thank out for your reply SJ. I expect when I see the Rheumatologist she will explain more but I thought by getting down to 4 my adrenal gland would start to wake up. Not sure how long you have to be on a low dose for this to happen. Blood results will go to the hospital my GP was just relaying what was on the blood results I guess. The visit to the endocrinologist will result in the Synacthen test I’m guessing but he says that I had to be on 4mg before this happens.

SheffieldJane profile image
SheffieldJane in reply toSuffolklady

Try not to worry too much. I hate that cold hand of dread on the heart, we get at different stages of this disease. Mostly for me they’ve come to naught. One day at a time.🌸

Suffolklady profile image
Suffolklady in reply toSheffieldJane

Thank you SJ that’s what I need reassurance.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toSuffolklady

I got down to about 3mg before mine kicked in properly - never had Synacthen Test. Very troublesome between the drop from 6mg to 3mg.

But once they got going all fine!

Suffolklady profile image
Suffolklady in reply toDorsetLady

That’s reassuring. I don’t know what to expect I have had tiredness for years probably pre pmr I can’t remember having energy. I await with bated breath.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toSuffolklady

Good luck. And please let us know.

GerriMc profile image
GerriMc in reply toDorsetLady

That’s so encouraging! Thanks.

PMRpro profile image
PMRproAmbassador

Nor, I suspect, would anyone else know what it means! You are taking pred, your cortisol level will be low. What time was your blood taken? Cortisol varies through the day and is suppressed by the fact you take pred anyway. Normally it rises when you are faced with a stress situation - and that is the purpose of the synacthen test, to see if the adrenals can produce cortisol when it is required.

Really - I have no doubt but that the GP doesn't know either but felt you should be told something so got the nurse to do it - and she hasn't a clue. If you are feeling reasonably well you will be fine for another week or so until you see the (I assume) endocrinologist. Or is the rheumy to send you for a synacthen test? However - by the "you will know what to do" I suspect the silly GP thinks you have been told how to deal with poor adrenal function: if you are ill, have an infection, trauma, emotional stress or feel unwell you should take extra pred as SJ explained.

In the meantime, stop worrying, things are no different from what they were last week. For normal function 4mg is generally enough. If you show any signs of an Addisonian crisis (wobbly, sick, really unwell) the thing to do is call 999 and explain the situation and a paramedic will come and sort you out.

Suffolklady profile image
Suffolklady in reply toPMRpro

Hi PMRPro. Thank you for your input. Yes this is the way it’s going to go being at the right level of pred before being allowed to have the Synacthen test. This seems to be a shady area some say 5/6mg is allowable but in our hospital it’s 4mg. What I don’t know is if I need to up it due to a infection stressful situation etc as the Rheumatologist said but I don’t will jepodise the test. How long the higher dose stays in the body if it’s taken for 3/4 day don’t know? If there is a problem with the adrenal gland I guess there’s medication to support it.

PMRpro profile image
PMRproAmbassador in reply toSuffolklady

Be positive - there isn't going to be a problem! It is only a week until you see the rheumy. IF you are ill - call 999 and ask for help.

Suffolklady profile image
Suffolklady in reply toPMRpro

Thank you.

Beds3391 profile image
Beds3391 in reply toSuffolklady

I am due a test for adrenal glans in 3weeks I was told they could not do the test intil wasunder 3 mil of pred for at least 3 weeks test is 0800 no later I hope consultant is better than had. I will let you now

Suffolklady profile image
Suffolklady in reply toBeds3391

Okay please do. I hope you get it done. I can’t beleive the different policies of each hospitals with what’s considered the right level of preds. I’m told 4mg you are told 3mg I’ve heard some say 5mg.

PMRpro profile image
PMRproAmbassador in reply toSuffolklady

I think it depends on what they want to look for. 5mg is probably fine where they just want to see if the adrenals are CAPABLE of producing cortisol - that doesn't mean they are doing so at the time. To know how much function is present the lower the dose the better. There are doctors who will say the patient must be off pred altogether - which is hardly practical for us as it might trigger a major flare. OTOH, knowing there is some adrenal function means it is safe to continue reducing slowly to see if it improves with time.

Suffolklady profile image
Suffolklady in reply toPMRpro

That makes absolute sense. Thank you

Lonsdalelass profile image
Lonsdalelass in reply toPMRpro

How much extra pred should you be taking? And does this apply only if you have low adrenal function, or illness /infection/stress generally? I suppose it depends what you have?

PMRpro profile image
PMRproAmbassador in reply toLonsdalelass

I think a lot of doctors say to double the dose - although that would be for PMR-type doses. Some doctors like patients to take a bit extra pred when they are unwell but not all feel it is necessary,

Lonsdalelass profile image
Lonsdalelass in reply toPMRpro

Thanks for that. And if you do double the dose, say they say for a week, can you then drop back to what you were on, ie half the dose, or should we be taking the time to taper?

PMRpro profile image
PMRproAmbassador in reply toLonsdalelass

No, if you have to up the dose for less than a week to 10 days it is fine to drop back to where you were. You might notice it a bit but there should be no harm done.

Lonsdalelass profile image
Lonsdalelass in reply toPMRpro

Thank you very much for this. It has reassured me in case I may have an extraction.

AndrewT profile image
AndrewT

Dear Suffolklady,

I don't know much, about Adrenal Function, nor what the Figure of 37 means. However you are seeing the Specialist soon and I'm, quite sure, that if there WAS a 'Problem' then that appointment would have been brought forward. I'm NOT having a 'Go', or moan, at you here but....You have been looking Things Up, basically 'Blind', on the Internet. (I have recently bought, that brilliant, Medical Series HOUSE- with Hugh Laurie. One episode concerned a Lady, who Presented, with an 'Incurable' disease. It turned out, that she Didn't have, this condition, but, her symptoms had 'Fitted' something she read 'On Line'....)

Sorry to be so BLUNT...but wait until your appointment, no really! If you are right, IF....Then the Specialist(s) will find the right treatment. If not Some Other Treatment, as necessary. As I said above, IF there had been a real problem, then 'They' would have Called You In- that I Guarantee.

I'll leave you with a quick joke...A man goes to his Doctor, with a slight Rash. The Doctor asks "Have you had this before" The man says that he has, to which the Doctor Says "Well you have it again."

I wasn't having a 'GO', at you, honestly...Just a Word Of Warning. I Wish you well Suffolklady. Can you let us know, how you get on, please?

Kind Regards

AndrewT

Suffolklady profile image
Suffolklady in reply toAndrewT

Thank you Andrew. What will be will be. Thank you also for the joke.

Pym1 profile image
Pym1 in reply toSuffolklady

But doctor, my wrist hurts when I bend it like this. ‘Don’t do it then’ 😉

Mipsie profile image
Mipsie in reply toAndrewT

The NHS sites are helpful. Make sure you look up the right site. Doctors are supposed to listen and learn from what they hear. I’m afraid they are just as likely to ‘look it up’. I have friends who got completely clear of pmr but here am I eight years on still on 3mgs, sometimes 6. Of course at 91 everything is slowing down.

Suffolklady profile image
Suffolklady in reply toMipsie

It’s a very strange thing to have without any set rules. That’s a long time 8 years. I’m quite lucky in the respect it only affect my arms and hands saying that before I was diagnosed it was 4 months of hell. Had pain in my body (Scoliosis) since I was 11 so its difficult i to determine what’s what. I have leg pains is it nerve damage or is it pmr, I don’t know? Wow, 91 that’s a great age to get to. My Mum was 90 last week you are both of that great generation that you just get on with it unlike me who gives up too easily. Take care

Suffolklady profile image
Suffolklady

Well the nurse definitely said your cortisol level is low. Then she said it’s 37 when I asked what should it be she said I don’t know. The test I had was not maybe referred as an Adrenal test but I had one at my Doctors last Oct on my Rheumatologist request to save me going to the hospital. It has to be drawn at 9am precisely to do with levels of cortisol in the blood to get the right adrenal reading which the phone call referred to also along side ESR and CRP, thyroids etc, no mention of those.

Hope you get on okay with your appointment too.

Hellyowl profile image
Hellyowl

I have just had my letter to see endocrinologists in May. I had to do 5 mg for 6 month and now have to try to get to 4 mg or even lower if I can by May to have tests to see if my tiredness and pains ect ect. Are adrenal problems. I think it happens frequently to people with our pred related lives.

Suffolklady profile image
Suffolklady in reply toHellyowl

Yes it’s hard going especially when you are expected to reduce in a specific time. It’s a catch 22 situation you are damned if you do and you are damn if you don’t. To get these appointments is hard enough here so you try to do as they say. I haven’t even got to seen a endocrinologist yet I do hope you get on okay in May. I know some might think it’s just the way pred work but nevertheless when you are in pain ( in my case not just my pmr) you feel permanently s*** and have to deal with extreme tiredness as well it sometimes feels another nail in the coffin.

Daffodilia profile image
Daffodilia

Have you looked at book by Kate Gilbert on PMR on Kindle - common sense advice

Suffolklady profile image
Suffolklady

Yes I bought it from Amazon a while ago. Good point need to refresh my memory. Thank you

Telian profile image
Telian

I don’t know much about adrenal insufficiency as I got down to 3mg last April with no problems. 4 years then with GCA/PMR. I had a flare and upped to 5mg and have been unable to reduce as before, i’ve managed to get to 4.5mg with great difficulty. PMR symptoms much better but I’m left with constant tiredness, hot flushes, nausea and dizziness since October. I mentioned it to GP who said my adrenals won’t be working being on steroids long term. - 5 years in March. He said to speak to Rheumie but they don’t feel I need to bring my April appointment forward. In the meantime the tiredness is overwhelming sometimes and I don’t recall ever feeling like this even on high dose Pred. Let us know how you get on. Best wishes.

Suffolklady profile image
Suffolklady in reply toTelian

I was lovely when I was on 15mg of pred, the maximum I ever took, like a new women, no pain, bright and energetic down side I couldn’t sleep but I never needed it I was like a rabbit on Duracell.

Suffolklady profile image
Suffolklady in reply toSuffolklady

I do hope you feel better soon it’s not always about the pain for me and the tiredness I can sort out with rest periods etc it’s the sense of no wellbeing, feeling strange inside hot flushes just generally not able to function the unknown. Best wishes to you

Telian profile image
Telian in reply toSuffolklady

It's like there's a gremlin in us that takes over each and every day. I too don't feel the same person lately, and put it down to one reason or another but it is going on and on and is more than wearing. I thought I'd got a virus when the hotness returned but it can't be after all this time! It's only reading about the adrenals and the symptoms some have that I began to link it up as apossibility. Some way to go yet but know what to do if things get really bad. My biggest problem is dizziness, I feel drunk but having investigations for something else that might be the cause so time will only tell. Hope you start to feel better soon.

Suffolklady profile image
Suffolklady in reply toTelian

I can totally relate to your post. One day is not the same as the next it’s difficult to plan Incase I don’t feel well and I often have to out on a face and get on with it but it’s difficult. I get hot flushes for no reason that have started now I have reduced my preds I don’t get dizzy fortunately. I hope you get sorted out too.

Telian profile image
Telian in reply toSuffolklady

I never slept more than 2 hours on the high doses and was near to euphoria - was prescribed Amitriptyline 10mg before bedtime and it got me through. Was able to come of it once reached 4mg without problem.

Suffolklady profile image
Suffolklady in reply toTelian

I would sleep between 3 and 4 hours when I was on 15mg a bit boring at night time waiting for day light but lovely to have the energy and it gave me such enthusiasm to do things I would not normally do. Swings and roundabouts.

Telian profile image
Telian in reply toSuffolklady

I used to clean all night!

Suffolklady profile image
Suffolklady in reply toTelian

Pity you are not on that amount now I’d give you my address you can come and clean my house lol

PMRpro profile image
PMRproAmbassador in reply toSuffolklady

That was your guide - at what stage did you stop feeling as good as that?

Suffolklady profile image
Suffolklady in reply toPMRpro

At 10mg I felt good 15mg was great but as I got to 8mg not to great when I was on 7mg I had a hell of a job to get down below and took ages not because of pain but the withdrawal was never ending i never felt well since. That’s why it was so difficult with the reduction withdrawal it didn’t last a few days or a week as some say I was permantly washed out tired, no motivation etc. Still am.

PMRpro profile image
PMRproAmbassador in reply toSuffolklady

Which all suggests you need to go back to 10 and start over again once you feel OK again. And maybe you will get stuck at 9mg for a while - but that doesn't matter. In the great scheme of things quality of life is all.

Suffolklady profile image
Suffolklady in reply toPMRpro

Yes might be right. As my GP said a lot of people thrive on a dose of steroids some old people go on them for pmr and come in the following week and feel wonderful better than they have for years. They do have that quality of making you feel good but I’m taking them for pmr although the feel good factor is great at 10mg the pain is under control at 4mg. Catch 22 really.

PMRpro profile image
PMRproAmbassador in reply toSuffolklady

What you are describing though is pretty typical of PMR that is NOT under control - even if you don't have pain as such. I wish I knew where doctors get this idea that pred makes you feel great - only if there was something going on in the background that hadn't been diagnosed. I'll lay odds that PMR doesn't often just appear overnight as they claim - it is there in the background and put down to "old age" but then suddenly it all mounts up and floors the patient. Lots of people have experienced that when they are given a steroid injection for knee pain or something and suddenly realise all those other aches and pains have gone, and it was actually long-standing PMR.

However, get the synacthen test out of the way and then reassess what dose you need.

Suffolklady profile image
Suffolklady in reply toPMRpro

Think I’ve had it for longer than October 2016. Haven’t felt right in years with my Scoliosis condition plus menopause there’s always a reason to blame. I had a big op in 2013 but really struggled to cope with it and recovery was slow. It was probably there way before and only came to the front when it affect my arms in 2916. How right you probably are.

celia81 profile image
celia81

The more you worry the worse it will get try meditation it helps to calm the frantic mind.If you find it difficult know it helps trying.Good luck x

Suffolklady profile image
Suffolklady in reply tocelia81

Medication you mean antidepressants?

Suffolklady profile image
Suffolklady in reply toSuffolklady

Sorry meditation, I miss read your post. I forget to mention I have no brain either lol. Yes I do that and breathing exercises too.

celia81 profile image
celia81 in reply toSuffolklady

Good it calms not only the mind but the body too less tension do it often.Yoga as well.It could be worth trying Reiki.Check Reiki federation for a therapist in your area.I am a practioner and I give my self Reiki it helps with pain and calms.

Suffolklady profile image
Suffolklady in reply tocelia81

I’m lucky my Sister in law is a yoga teacher and therapist in Reiki and EFT. My Brother does Shiatsu treatments too. Got lots of support there.

celia81 profile image
celia81 in reply toSuffolklady

Fantastic enjoy allow healing to take place let go of what you are holding onto x

Telian profile image
Telian in reply toSuffolklady

I do Tai Chi and it helps me relax - suits me better as don't have to get on the floor for any of it.

Suffolklady profile image
Suffolklady in reply toTelian

Often thought about that.

Suffererc profile image
Suffererc

Hate it when doctors leave you not understanding completely or using abbreviations.

Suffolklady profile image
Suffolklady in reply toSuffererc

Yes wouldn’t hurt for the doctor to give me a ring himself or better still call me in to see him. He knows I se the Rheumatologist on the 8th feb would have been better to have kept his mouth shut.

Suffererc profile image
Suffererc in reply toSuffolklady

Agree. Also if the nurse couldn’t tell you what a normal reading was why didn’t she find out for you instead of leaving you in the air. Where is the compassion these days with medics. They cause so much stress

Schurch profile image
Schurch

I am not sure what will happen to us once we have either cut way back or off of our prednisone. I too have felt exhaustion when I was down to six mil of prednisone. Unfortunately I have not been able to stay on 6, but had to go back up to 8. It was a big difference in my energy once I was back on 8. So because of that I to am worried what will happen to us once we are on a very low dose or off of the prednisone. It is so important for us to get as low as we can. I am very worried what this will do to our bones. Just hoping our bodies will eventually produce what we need to not feel so exhausted. I would think if not the doctors will be able to help us with meds. I have a very good rheumatologist and hopefully you do to, to help us get back to what we had before the drugs had to take over. Good Luck

PMRpro profile image
PMRproAmbassador in reply toSchurch

8mg is already a good dose - a physiological dose, about the same amount of corticosteroid that your body produces to be able to function and without which it doesn't function well. If you take less pred, your body must produce more of the natural stuff, cortisol. so the amount of steroid remains about the same and the side effects are minimised.

Suffolklady profile image
Suffolklady in reply toPMRpro

I find that that I feel better no lower than 10mg. As soon as I get to 8/7 I really notice the difference in energy and my general health although my pain is manageable with pmr on lower. I suppose there’s going to be that point where we are to low on pred and not enough of the natural stuff to combine to make us function. I have always been a low energy soul anyway in fact my mother says I was born tired lol.

I just went up the doctors and got a print out of bloods. Are you interested in what it says?

PMRpro profile image
PMRproAmbassador in reply toSuffolklady

I'm interested in everything... Or maybe it is just being nosey...

Suffolklady profile image
Suffolklady in reply toPMRpro

No you are certainly not I will write it out to see if you understand it. It’s foreign to me. Do it after dinner thanks Pro.

Suffolklady profile image
Suffolklady in reply toSuffolklady

PMRpro...This is what was put on my blood test report about my cortisol.

Serum Cortisol. Abnormal - 37

Contact patient.

The cortisol assay has changed to improve traceability to the gold standard and the results are 20 to 25% lower than the previous reported. The cut-off for a short synacthen test is 420 nmol/ L and for 9 am cortisol, level of 350nmol/L makes adrenal insufficiency unlikely.

Results given by phone to surgery.

Hopefully it might make a bit of sense to you.

PMRpro profile image
PMRproAmbassador in reply toSuffolklady

I'm assuming that that is the figure they got for a 9am sample? If so - it is pretty low (though without units I can't suggest how low.

But the usual comment is that it is impossible to make statements from a single isolated reading - a stimulation test is required for more accurate assessment.

"Contact patient" without some information for her seems a rather stupid command!!!! What have you been told? Anything?

Suffolklady profile image
Suffolklady in reply toPMRpro

Yes the blood test was done at 9 am as it was specified. I don’t know what the cortisol scale is so I don’t understand what 37 mean, it is a piece of useless information to tell a patient but more so when the Doctor give the job to a nurse to ring me not knowing herself what this actually means. I suppose I could have pushed the point and asked to speak to the doctor but she said he said I would know what to do meaning I’ve got an appointment at Rheumatologist soon I’m assuming. Think they are covering there arses as it says ‘contact patient’. Thank you for your reply.

PMRpro profile image
PMRproAmbassador in reply toSuffolklady

If it is as low as I think it is you should have been provided with more information - SheffieldJane had an emergency pack sent her because of low adrenal function without any explanation! The NHS endocrinology services don't appear to be quite up to scratch!

But basically - keep that result handy and if you feel really unwell, cold, shaky, nauseated for example, call 111 and tell them the result and that you are a long term corticosteroid patient now at a low dose.Don't ignore it - and that way you cover all bases.

Suffolklady profile image
Suffolklady in reply toPMRpro

You know what the level should roughly be then?

Thing is I was on 5mg in October the Rheumatologist requested a Synacthen test said when she knew when she’d ring. Amazingly she rang 2 days asked if would I prefer to see the endocrinologist at this hospital (Ipswich) or prefer to have it done closer to home. As hospital is only 9 miles away not sure what the issue was. However a day later she rang again and said the Endocrinologist contact her saying I need to be at least 4mg of preds or under before it can be done. Thats the level I aimed for when I see her on the 8th feb. Pain under reasonable control but the tiredness is dia along with feeling a bit unwell.

You mentioned SheffieldJane had an emergency pack, what was that then? I’m not within the endocrinologist dept as yet. What are the risks of being to low then?

PMRpro profile image
PMRproAmbassador in reply toSuffolklady

Down to quite a low dose you are probably OK day to day - the body needs a certain amount to function and according to a research group in London, 4mg of pred is probably plenty for that. However, if you are ill, injured, exposed to severe stress of any sort, the 4mg of pred may not be enough and normally your adrenal glands would produce a spike of cortisol in response to what is often called the "fight or flight" response. If they can't then you can become quite unwell suddenly - and need a quick replenishment of corticosteroid to sort it out. In Sheffield at least, the endocrinology unit sends out emergency packs to deal with that which are to be kept easily available and you and any partner/family member who lives with you should know how to use it. It is just an injection of steroid - if you are too unwell you wouldn't manage to take oral pred and anyway it takes an hour to work. Another option is to call 999 and a paramedic will come and do it, they carry what is required. One lady who used to be on the forum had almost no adrenal function and said that a couple of times she had become quite confused and her husband had given her 10mg pred in case - she was fine in an hour or so.

This is a good article about it all:

mayoclinic.org/diseases-con...

Once they have done the synacthen test they can make a decision as to what level of treatment you might need - if your adrenal glands aren't producing any or not enough cortisol, which it sounds as if may be the case, then you will be told to take more pred again as a replacement therapy, like thyroxine in hypothyrodism.

Not long until Friday though so don't worry about it - just be aware and if you show any of the symptoms in the article, don't ignore it but call 111 and explain even if you can't get to see your GP quickly. If all else fails - 999.

Suffolklady profile image
Suffolklady in reply toPMRpro

Thank you for your lengthy post it was really interesting and explained many things. Seeing a Rheumatologist you only have a few minutes to take in all the information that throw at you. Although I list my questions on paper I never quite remember everything. The answers they give are not always absorbed into my poor memory so I come out saying ‘what did she say’ to my husband. Having this written down in black and white I can understand it much better so thank you. The link was of great value

PMRpro profile image
PMRproAmbassador in reply toSuffolklady

Do you have a smartphone? Take a recording of the consultation - tell them you are doing so for your own need to be able to check what was said because you forget.

Suffolklady profile image
Suffolklady in reply toPMRpro

Sorry PMRpro just one more question. With appointments coming up and tests pending if I need to double dose for say 5 days how long does it take the body to adjust back to the original level of pred which was 4mg? I don’t want to jeopardise the test because I have a higher level of pred in me maybe because I needed to take more for whatever reason.

PMRpro profile image
PMRproAmbassador in reply toSuffolklady

Cross that bridge if you come to it. I think that going back to double the dose for that long just before a test would probably invalidate the results as far as the endocrinologist is concerned. Theoretically, you can up the dose for up to a week and drop back to the previous dose without a problem - but that is for everyday practicalities rather than getting good test results.

Suffolklady profile image
Suffolklady in reply toPMRpro

Yes that makes total sense. Hope the appointment with the endocrinologist if I do get a test isn’t going to be months that my worry. I will cross that bridge as you say good advise.

salparadise127 profile image
salparadise127

3 years of PMR and I am stuck at 7 mgs per day of pred for the last 3 months, Anything below, I moan the achiness and fatigue. Adrenals: Wake Up Already! Another joke: Doctor tells patient bad news; "You've got six months to live". Patient says "Doc I got bad news too, I can't pay my bill".

The Doctor gave him another six months

Suffolklady profile image
Suffolklady in reply tosalparadise127

Yes it was the same for me but I think a lot of my aches and pains are arthritis which is nicely masked in a higher dose but comes back when you get as low as I am. Yes I need some energy back too.

PMRpro profile image
PMRproAmbassador in reply tosalparadise127

Probably not your adrenals to blame for the achiness and fatigue - but the PMR.

Suffolklady profile image
Suffolklady in reply toPMRpro

Yes totally agree

PMRpro profile image
PMRproAmbassador

I know - I struggle a bit with how much to say sometimes but on the whole knowing that if someone knows what to do, they are less likely to become seriously ill if it goes pearshaped makes me write it. Too long with family (and self) working in the NHS means you know about so much where you think, if only they had been told what to do...

And recently, personal experience has been a case of "why do I know this, do I want to know this..."

Suffolklady profile image
Suffolklady

Thank you DadCue that is kind of you to ask your friend. The Rheumatologist will more likely explain it but it’s whether I can understand it all. There’s so much to fit into a 15 minute appointment although she’s very nice, not negative in anyway and what I likeda bout her she said on our first meeting ‘with pmr there are no hard and set rules with this desease everyone is different there no time scale on its length but we will manage it together.’ I trust she has my interest at heart and I can talk to her easily. I will let you know what happens.

PMRpro profile image
PMRproAmbassador

The instruction for a synacthen test are to not have taken pred for 24 hours beforehand - it is always done at 9am so you can take the previous day's dose and not that on the day of the test, you take it as soon as the test is finished.

I know that a doctor in Scotland has developed an algorithm to use in patients still on a low dose of pred. The results are obviously different but can still be interpreted to give an orientation on the situation. A basal cortisol level is fairly meaningless though - and the stimulation test is a more useful indication of whether it is safe/worth continuing the reduction to get to the sort of low doses where more meaningful studies can be done.

Suffolklady profile image
Suffolklady

If you followed this post you will know that I went to see the rheumatologist on the 8th of February some of you wanted to know how I got on. Well that was a total waste of 45 minutes of my time. I went with the intentions of finding out what was the optimum adrenal function as mine was only 37 and apparently was classed as low. After much discussion where we were going round in circles I eventually found out that ideally the function should be 200. According to the rheumatologists letter from the Endocrinologist I will not be able to see him until I have had several normal adrenal blood test’s with a very low score. I would have to remain on 4 mg or less to have this test done over what period of time I do not know as the rheumatologist didn’t tell me so I explained that the tiredness was terrible and that I was having difficulty functioning, brain and body wise so she suggested that I upped my predisolone if this was the case. She suggested that I went to see the GP to get a referral to an endocrinologist which I explained would not be appropriate as he would say why not just go to the one at Ipswich Hospital under the referral of your consultant rheumatologist. She then went on to say that this is not how the system works and that by going to the GP I might be able to see one at another hospital. By this time I am totally and utterly confused and said I don’t want go to another hospital I want to stay with this one where all my medical info is. She said in this case she’ll write to the one who sent the letter to her a Dr Fowler. So Long story short she will write to the Endrchronologist who quite frankly listening to her read the letter wasn’t interested in seeing me or doing a Synathen test as in his opinion it’s a waste of time at this stage and won’t be accurate. She will request a consultantion with him so that he can explain as its out of her field. I came out of the consultation room with my head buzzing not knowing whether I was coming or going I had achieved nothing and got not a clue what I was going to do next with medication and totally peed off. Got to wait now to see if I will get an appointment with him although he sounds like he couldn’t care less and was leaving it to the Rheumatologist.

Suffolklady profile image
Suffolklady in reply toSuffolklady

Sorry the post was so long winded I needed a rant!

PMRpro profile image
PMRproAmbassador in reply toSuffolklady

That's fine - I'm not surprised!

I didn't think the rheumy could refer you either - thought it all got tossed back to the GP.

It's a chicken and egg situation I suppose - the endo wants to see if your adrenal function is still impaired after a long period at 4mg, if you increase the dose he'll say that invalidates any testing. The endo hasn't suggested one thing I would have thought was an option: for your rheumy to switch you to hydrocortisone OR add HC to a pred dose to try to improve your functioning while still prodding the natural adrenal function.

This study

ncbi.nlm.nih.gov/pmc/articl...

seems to suggest that there is something of a black hole when it comes to the problem of adrenal insufficiency after corticosteroid therapy - that it can happen far more often than is generally thought and at shorter and/or lower dose courses. Given the lack of interest shown by the endo - I think I'd accept going elsewhere even without the notes being available in the same hospital.

Suffolklady profile image
Suffolklady in reply toPMRpro

Well I’m going to wait and see what she comes up with first. I don’t know enough to be able to stand up for myself. The Rheumatologist is lovely easy to talk to but she at the end of the day is only trying to deal with PMR not the Adrenal system. But having been in touch with Endocrinologist I would have thought why go else where at this stage. My hubby reckons he’s not interested because it means more work.

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