adrenal removal I had a Andrea all gland removed and the other adrenals gland didn’t wake up over a year ago . I constantly feel tired and sore joints . I am currently on 35mg of hydrocortisone per day . I have tried several times to reduce to 30mg per day but my body goes into adrenal crisis leading me back in hospital with 100mg through the drip . How else can I possibly reduce safely
stuck in limbo: adrenal removal I had a Andrea all... - PMRGCAuk
stuck in limbo
Written by
Sofabound
To view profiles and participate in discussions please or .
Read more about...
58 Replies
•
PMRproAmbassador
You are on that dose of HC because you have adrenal insufficiency and that is a common dose for that. If you have no or very little adrenal function you won't be able to reduce - at all. The body requires a minimum amount of corticosteroid to function, generally taken as about 7mg pred - which is the same as 35mg HC. I'm sure your doctors have put you in 35mg HC for a reason. You should ask them if you should be trying to reduce at all - somehow, I doubt it.
my endocrinologist advised me to reduce gradually to 20mg he says the body only needs 7-10 mg but my body won’t listen lol . I really don’t know what to do as I feel like what’s the point no energy to do anything
Everyone is different and somewhere he sounds to have got his numbers confused - UNLESS he is fixated on the Imperial college sutdy where they claim 2mg of pred is enough. 7mg pred is the same as 35mg HC - and many patients need 7mg pred if they have any level of stress to cope with. His insistence on you reducing is putting you under stress in itself and your repeated episodes of adrenal crisis is proof if any is needed that you need 35mg HC.
If it were me I'd ask for a second opinion - intransigent doctors are a nightmare.
thanks . I just feel the doctor don’t listen and I know my own body better than him
Just wondering Pro with your vast range of reading , do you know of any particular research papers that you could recommend to Sofabound to show to her Specialist to argue her case for not being forced to keep trying to reduce?
Or is there a particular NICE treatment guideline to print off?
Not that it should be needed the physical proof of needing to go to hospital each time a reduction has been attempted should be enough for any intelligent doctor to stop encouraging this unhealthy push to reduce anyway.
Hope you are well , Bee
yeah five times in one year is enough for me .
If there were one that said it that clearly I'd quote it!!! Bless her - Sarah Mackie thinks they work it out for themselves that this isn't a one-size-fits-all and you adjust the taper to suit the patient. Hahahahahahaha - her face was a picture when I and another patient at a NICE meeting told her they don't! She is about to start on demolishing the "2 year PMR myth" - can't come soon enough ....
HOWEVER - sofabound doesn't have PMR, the HC is for adrenal insufficiency and her endo obviously doesn't believe the 7mg pred/35mg HC equivalent for daily requirement of supplemental corticosteroid. Recommendations do suggest 15-25 or 20-30 mg/day HC depending on where you look but there are likely to be patients for whom even the higher end of the scale is not enough.
This
academic.oup.com/jcem/artic...
is quite a good discussion - and under Treatment points out that absorption and peak levels of HC in the blood can vary considerably and also says, in the conctext of monitoring,
"Thus, in the absence of objective parameters, the physician has to rely primarily on clinical judgment, carefully taking into account signs and symptoms potentially suggestive of glucocorticoid over- or underreplacement (Table 1), recognizing their relative lack of specificity. Glucocorticoid underreplacement bears the risk of incipient crisis and significant impairment of well-being."
Precipitating an adrenal crisis requiring hospital treatment more then twice strikes me as plenty to bring such variations to the doctor's notice!!!!!
well done you . I constantly tell my doctor and his attitude towards it is you don’t want to reduce do you . Erm yeah I do
I DO want to reduce - but NOT if it makes me ill. And blatantly obviously it IS making you ill. I can't imagine ANYONE wanting to reduce knowing there is a high possibility that they could end up in the ED on a drip of hydrocortisone - and potentially circling the drain. Once bitten - twice shy! And you have been bitten HOW many times?
Sofabound mentioned 5 times!!
Clearly , she shouldn't be accused of not wanting to, or not trying to, follow the advice to reduce either. She's tried 5 times already.
I don't think I would have attempted to keep trying more than twice if a trip to A and E was the repeated result. I can't understand this Consultants complete lack of acknowledgement and irresponsibility in continuing to try and push through a reduction when the effects are so severe and the evidence is clear.
Their comment seems to imply that Sofabounds body just isn't trying hard enough to do what he wants and stay out of hospital!
I'd definitely be asking for a second opinion and possibly putting in a complaint by now , this insistence to try to reduce no matter what is going to be putting a huge toll on other organs as well as she tries to recover from each new crisis.
I'd sure as h*££ be looking for a second opinion!!!!
I need to reduce as I have a hernia from the op to remove it and the surgeon says to operate I need to be on a lower does which I find impossible to do . Is there another med to replace HC if anyone knows of I could try . Or am I just stuck like this for life now
Does he refuse to operate on normal healthy patients whose bodies are producing the normal amount of cortisol naturally? HC is almost the same stuff and does the same thing - it is essential to life. I doubt it. If the surgeon makes you go to a lower dose of hydrocortisone the anaesthetist will have to give you more to prevent an adrenal crisis in theatre - and afterwards to prevent one ongoing. I think you need to find a surgeon who sees both sides of the situation - and your endocrinologist should be able to help there. Though I think you may need a new one of those too!!
If you have adrenal insufficiency that requires a specific dose of HC to prevent you going into an adrenal crisis, then yes, you very probably ARE in this situation for life, certainly for a very long time.
HC is a corticosteroid drug that is replacing the cortisol that the adrenal glands should be producing and aren't, Cortisol is essential to life - without it the body is unable to carry out a range of functions and if they don't work you become at the very least very ill, and you may die if it isn't replaced. That is what the adrenal crisis is: the effect on your body of it not having enough corticosteroid available. The only things that can replace HC are other corticosteroids - all artificial and much stronger and longer lasting in the body than HC. HC is the nearest to natural steroid they have. No other choice. It is a bit like using insulin in diabetics - without it, they would soon become very ill and could die.
Has no-one explained this to you?
This is a very comprehensive explanation of adrenal insufficiency which might help you understand. It sounds as if your doctors may need to read it too.
mayoclinic.org/diseases-con....
yeah I know most of that sorry putting things into writing isn’t my strong point as you have probably gathered. I just thought if I was put on something else my body might handle it better because on 35mg per day I still get really shaky and light headed 40 mg I felt I coped a lot better but like I said the doctor told me I had to be on 20 mg per day . So I thought that’s what I have to do . As I thought he knows more than I do .
He does know more than you BUT according to my reading some patients may need more than 35 - some as much as 50mg/day. So maybe he just hasn't had the experience to know that or come across it before. You need the dose you need to function. the 30mg he is used to using is quite obviously not enough for YOU - I might be fine on it, or even less.
I'm not sure but I think that if you have total lack of adrenal function you may need other things supplemented or more corticosteroid - it isn't just the lack of cortisol that is the problem, the adrenal produce other substances in another part of the gland and that can be disturbed too.
I know it is difficult to talk about things with a lot of doctors. But you are a bit stuck at present - with an endocrinologist who seems not to understand your problems and a surgeon who is totally out of the loop in terms of adrenal function. We often tell patients on pred who are being told they can't have a joint replacement op until they are off pred altogether to shop around and find a different surgeon. Good ones will say they can operate on patients on pred - they have to all the time in an emergency and if you stop the pred you put the patient at other risks. Just like if YOU go to a lower dose of HC YOU develop other problems. They have to treat the patient in front of them - not one out of a textbook who doesn't exist in reality
I do love the wide eyed beliefs that good Senior Consultants have about how their colleagues put treatment protocols into practice. The idea that they assume those colleagues would use their own brains and a patients full medical history to make more individual decisions based on need , it's so adorable! Ha, ha, ha, ha!
They usually read one , two page outline on Management techniques and then run with it for the next thirty years no matter how much new research or new training techniques have changed. They often just choose the management based on the guidelines for the lowest common denominator (patient otherwise healthy except for that one key medical problem) and don't bother to learn the amendments , which are often in the original guidelines , on treating more complex patients ir cases.
I've just found that out again while sorting out my B12 Deficiency Anaemia treatment. They all follow the three month injection rule in the UK and set it down in stone in the surgery regulations , but the NICE guidelines themselves even state , if a patient gets neuro symptoms or has a neurological condition it can be two months for life with no need for further B12 blood tests to validate the need.
I've pointed this out to my GP whom finally read it (for goodness sake , the treatment protocol is only about 20 sentences) and saw sense, although she did say to keep it under my hat as it isn't surgery rules! It should be , because it's the actual rules!!
I just get so sick of them rattling back ' can't do it' answers to me allegedly based on rules when they aren't based on a full reading of the rules at all , and often put more vulnerable patients through unnecessary symptoms because of it. I do like it when I remind them of the rules and they have a sudden revelation and have to U turn though.
Oh to be a fly on the wall when you are teaching ...
It is so refreshing here - no arguments. If Italy doesn't list it you can't have it - that is fair enough. But they do follow the rules ...
It's both funny and worrying all at once. Every time I go in now they ask if they can keep the copy of the thing I'm showing them , or test process lists. I'm glad in one way that a few of the GPs at my Surgery are finally ready to learn and act on things but I'm also stunned that they need their Patient to advise them!
I noticed that the really good nurse I choose now for all my blood tests and jabs had pinned my recommendation for a gentle iron supplement (Solgar) on her notice board. I was discussing how hard it is to get a B12 supplement which is not synthetic and is active (Holland + Barrett VitB Complex , is the only easily available one containing Methylcobalamin, even their B 12 is synthetic and hard to absorb) , she then wrote that down and added it on the board too.
Europe seems so far ahead in following research for deficiency issues. They use simple Iron Bysglycanate or Active Iron as standard in the Netherlands, my GP looked it up , its not even available as an oral supplement at all on the NHS, only as an injection for vulnerable patients in hospital. Leaving no options for all of us poor people whom can't tolerate Ferrous options.
Anyone would think that they didn't have computers!!! If I tell a doctor about something like that here they immediately look it up! Or does your practice lock them out of google??
No, but I think that most doctors in the NHS are so used to trying to undermine their patients questions by criticizing them for looking at " Dr. Google " they cant then justify doing it themselves right in front of the patient they just patronized .
They also seem have a phobia against it , much like Men resisting asking for directions from a passerby , believing it undermines their professionalism or skill. Neither want to admit they are a bit lost.
In reality , the opposite is true ,seeking the best information available on things or people they don't treat regularly to help their patients makes them far more professional than turning the screen to the wall and pretending they don't need it.
When I finally found the female GP in the Durham practice who knew about PMR she was in the process of teaching her colleagues how to use Dr Google for the patients' benefit! You need to teach the patient the right way to use google - but I suppose if you don't know, you can't teach anyone else! The numpty who couldn't recognise PMR admitted to me this woman had taught him how to use google! They sit there with their noses glued to the screen - kindly use it to help US!
My GP looks things up during a consult and emails me the useful links. And on the B12 question I'm left to manage myself. I need an injection around every 30 days. Because I spent over a decade camping in the Australian outback I was taught to inject myself. The instructions the pharmacy adds to the box say I can go to a frequency of every 2 weeks as needed. I've never needed. 😀
Use whatever quality information sources you can
Wow, that's good and rare , you are very lucky. Love the cartoon , very much more like my experience over the years
My rheumies will print out publications that are behind a paywall 
I've put that cartoon up too - and even my rheumy here, a world name in PMR/GCA says he learns things from me about living with PMR. So does Prof Mackie in Leeds, another big name. And most of what I pass on comes from experiences posted on this forum.
Brilliant.
are you on pred as well?
just wondered how you found us as this is a forum for those with PMR and/or GCA
my endocrine nurse gave me this site to look at . Am I not meant to be on here
if we can help of course you can be here-we know s lot about steroids (which is probably why nurse suggested it) and there doesn’t seem to be another more appropriate one.
thank you . I was just getting confused there . And thank you for your earlier reply too
That's interesting! Must be doing something right 
We are pretty good when it comes to tapering though.
And there are many of us with enormous sympathy for you. I am a newby and couldn’t advise but this is the place for wonderful experience advice about steroids and ai. All the very best.
I really sympathise with you...I have adrenal insuffficiency...and most of the time feel dreadful. I am on 5mg prednisilone, but have given my prescription in from the hospital to the surgery to go on HC...10mg am 5mg teatime (not started it yet)...the other day I thought I felt so much better....OH took me out for a lovely drive, and had a 10 min walk round a lovely quaint Suffolk village....since then...well....struggling to keep awake, very heavy aching cold legs. Some people comment on the bags under my eyes which I don`t normally have, don`t care what I look like, it`s how we feel that matters. I wouldn`t lower anymore if I was you at the moment, I will stay at 5mg pred, or the HC dosage until new year....it`s how we feel that`s important, not what the medics think we should be doing...
Good luck and keep us posted...
aww thanks it’s good to see it ain’t just me going through this . As doctor even suggested that I was going through the change . I’m just tired all the time even after I’ve took my 20mg in the morning
Do you also have an autoimmune disorder? Is that the cause of your adrenal insufficiency? I ask because if so, that may well be the cause of your fatigue - not just the lack of cortisol itself. I'm on plenty of pred but I still have the fatigue of the autoimmune cause of the PMR. It;s a bit like having permanent flu!
I had a tumour on my adrenal gland and it was over producing cortisol which made the other adrenal gland go to sleep . When they removed the tumour and adrenal gland the other one didn’t wake up . I am now autoimmune due to this
I assume you mean adrenally insufficient? Autoimmunity is when your immune system can't recognise your body as self and attacks it in the same way it would a virus or bacterial infection.
The trouble is - HC is a very rough way of supplementing cortisol as it can't continuously adjust. Maybe one day they'll develop a constant monitor like the ones they have for insulin.
no my doctor told me I’m autoimmune aswell as adrenal insufficient but yeah hopefully
Ps meant to say my cortisol numbers had risen when I had an ACTH test, but I don`t feel any better for it!....how confusing....
I hope you are feeling as well as you can this morning.
I've just asked PMRPro ,whom is the best read person , here if there are any research papers or treatment guidelines she could suggest to you to print off, read and show your Consultant to help get you better treatment that fits you .
Really , the fact that you have needed to go to hospital each time you have tried to reduce should be enough evidence for your Doctor that you shouldn't be reducing , and in fact , as an individual patient, that you may need a larger dose, or more tests, to check that there isn't something else affecting how well you are doing that could be improved with other medication or physical therapy.
Unfortunately, not all doctors think, and often rely too much on what their usual treatment plan tells them, forgetting that patients are all individuals and often need different types of help depending on all their health issues.
Do you have any other health problems or do you take any other medications that might be affecting how well you are feeling?
Let us know it might help.
Have you had blood tests recently for iron , folates , Vitamin B12 and Vitamin D , full blood count and liver and kidney function ?
Deficiencies could also effect how well you are coping on your medication and in general .
I'd suggest you request these blood tests at your GP Surgery to get a set of results to work from , especially if you haven't had them tested for more than three months. You have the right to request these tests , and if you explain that you are trying to get a baseline to see if there are other things that you can do to help your treatment they cannot object.
Always get print outs from your surgery of any test results and hospital letters to keep in a file that you can take to appointments and show to the doctor to discuss your needs. You may find a second opinion from another Consultant would be sensible for you and you have the right to request one , especially as the advice your current Specialist is giving you seems to be quite irresponsible if it keeps sending you to hospital when you try to follow his reduction requests.
In the meantime , I would stop trying to reduce your dose as your body is telling you a reduction isn't right for and then you can work on pacing yourself , getting your body more balanced with diet and fluids and getting your Fatigue under control so that you could do a little gentle movement each day . All things that built up very , very slowly on your current dose should help you feel less tired and achy over time .
Take care , Bee
I developed secondary AI and am taking 25mg as that is what my body needs. My endo is quite satisfied with that. I don't understand why your endo wants you to reduce. I think a second opinion would be an excellent idea. Also you don't mention how you are taking HC. My endo suggested I take it every 4 hours. So I take it with each meal. If your taking it all at once you might try spreading your dosage out throughout the day.
Possibly because 35mg and above is the range associated with bone density loss
Maybe so but you don't die from broken bones you can die from an adrenal crisis.
Of course - though I would dispute not dying of broken bones. The dreaded #NOF is a death sentence for many elderly patients - even if they don't die of it at the time the resulting disability can lead to the old wo/man's friend, pneumonia. And that is what they are often so terrified of.
Great tip , Amkoffee
Not what you're looking for?
You may also like...
In limbo
the usual toxic sensations, lead limbs etc) until I got to 6 mgs. I'm reducing at half a mg a...
Stuck !
have tried to get to 7 ,twice now . Every time i reduce i think im there but as i get to the end of...
Stuck !
having a flare trying to reduce from 25 mg. ( most people have flares it seems reducing from 10 mg...
I'm being left in limbo
now. Headaches mostly mild that come and go. A few per week. Usually appearing in early evening....
Stuck on two and a half mg.
September I started reducing to 2mg intending to take the next 2mg dose after 6 days on 21/2.
All...
Seem to be stuck at 7.5mg
Stuck in Morocco
Stuck at 3mg
Stuck on 8mg 
Stuck at 4mg
