LUPUS UK
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Synacthen test result. Furious again!

Just rung up to chase the result of my synacthen test. The nurse had told me that she would ring next day if there was any problem, so after two weeks, I've been happily assuming that there was no issue.

My GP now informs me that my results show adrenal insufficiency, presumably caused by long term prednisolone treatment. He is increasing my pred dose, and says that I now need to keep a store of injectable hydrocortisone to hand in case of emergencies. This news - apparently - does not count as anything that either the endocrinology nurse or my GP felt the need to inform me of without my chasing it up.

To add to my fury, this possibility was the VERY FIRST CONCERN I RAISED WITH MY RHEUMY when I began getting my extreme fatigue plus episodes of sweats, nausea, shakes 18 MONTHS AGO. He dismissed my concern, saying there was no chance that I could have developed adrenal insufficiency after just 6 months of pred treatment. I raised the same question again, 6 months later, and he said, "No, you've developed fibromyalgia". It was only after I insisted on an endocrinology referral at our next review, that this result has been confirmed.

I am spitting feathers. Or would be, if I had enough cortisol to do it.

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OMG...There It Is...Places Flippin Everything about The System in Question...Am Appalled...you’ve Said It All, Mike..Am Right There With You SPITTING FEATHERS (now am more sufficiently medicated on a maintenance dose of daily 10mg pred i DO have the required Umph) .....GRRRRRRRRR.....AND: Well Done! now you know there’s no question about it: you’re very well informed, self aware + a very clever diagnostician

🌟🌟🌟🌟🌟👏👏👏👏👏

😘🍀😘🍀 coco

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Say, Barnclown, are you angry about something? If so, you don't really explain it in the language I can understand. I hope you feel better soon.

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😂😂😂😂

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Thanks coco. My next step is to pick up and read the full endo report before discussing future treatment options with any of my clinicians. My big problem is that I now have zero trust in them, so I will have to depend on my own judgement both to interpret any symptoms, and to decide on a treatment plan x

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Yes, i agree: it’s over to you now! Am still fuming at what they’ve put you through: it’s absolutely shambolic! And i am SO GLAD you’re getting a clearer view of the picture: you’ve had a really really really tough time and i think you’ve been incredibly courageous about all of it. 😘🍀😘

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That's kind of you, coco, thanks x

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Oh my word! You have every reason to be furious. I would be going ballistic. How dare they not even bother to let you know. Grrrr, things like this make my blood boil. I really feel for you.

Anyway, once again it's proven that we know our bodies better than the so called professionals and is about time we were listened to more.

Glad you got there in the end though and hope you can stay positive. X

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Thanks Georgie-girl,

Yep. It's a learning experience all the way, isn't it? ;P x

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I'm sure somewhere along that story I have said something that now justifies "I said so..."

I have heard this rubbish about "it can't be poor adrenal function ... you haven't been on pred long enough". Strangely, oh wise ones, there are other causes of poor adrenal function besides being secondary to pred and anyway, that short period of pred might have been the final straw.

I came close to being thrown out of a consultation with a colleague of my husband (who was present at the time) for being "abusive". I wasn't, I just raised my voice a bit. But by god - in this case they'd probably call the police...

I would be filing a complaint - or a couple really. I just shudder to think what could have happened in the last 2 years had you had an accident or severe infection...

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Thank you PMRpro,

I wish you were my consultant! As you say, I am going to have to keep a tight rein on my feelings in my next rheumy review....x

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Definitely agree with pro about a complaint or 2. It well and truly warrants it.

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Seconded!

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OMG! This needs a formal complaint. You must be furious. I am!!!

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I'm trying not to think about it too much right now. It's pretty tough to reflect on the sessions I had with the physiotherapist to do "graded exercise" for "fibromyalgia", the prescription for gabapentine (even though I had no pain), the £200 i spent on the home testing kits for thyroid and cortisol levels as my rheumy insisted there was no need for him to order them.....I could go on......Thanks for your empathy, though! x

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Oh Mike this really does take the biscuit!! No wonder you feel so outraged. This post sits at the top of all these posts we’ve had about medical incompetence and medical ptsd and such like.

I do hope, once your lousy adrenal function has been properly addressed, that you can spit feathers in a way that is both cathartic and useful at these people. There is an important lesson to be learnt by these doctor Gods about the patient always knowing their own body best.

I somehow knew a day would come when you found that you had been right all along. The Sjögren’s doctor said that, in her experience, we all sit somewhere on this rheumatic spectrum by temperament rather than circumstance. I had a strong inclination that your temperament didn’t sit in the Fibro part of this spectrum at all. X

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I still maintain that fibro is a lazy doctor's diagnosis. Although plain ignorance contributes greatly.

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Thank you Twitchytoes, Obviously I am really hoping that this does lead to a treatment that will resolve what are disabling symptoms, and if this happens, I will be overjoyed, regardless of the path I've had to take to get there. However, I am not counting any chickens yet. I may yet be writing another post with "Furious" in the headline.....! Good to hear that you seem to have made progress with your PhD proposal x

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Thanks Mike. It’s experiences like yours that have inspired my PhD topic. So we will be able to liaise on spitting feathers as a metaphor sometime in the future I hope.

Meanwhile I have my PIP tribunal on Thursday morning - have had to take to my bed to recover after running through my notes yesterday! X

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Totally off topic, but I see you mentioned going to PIP tribunal. Firstly, I hope it went well! Then can I ask if DWP happed to phone you before tribunal with an offer if you withdrew your appeal?

Thank You🌻🌻🌻

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You will have to read my post here from Friday on this one I’m afraid - not a subject I can bear to dwell on just now☹️😣😖x

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Oh my goodness, I'll have a look. It doesn't sound good. I'm so so sorry! 💕

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Hi Mike

Absolutely shocking, but the sad or scary thing is that it doesn't surprise me at all.

They have got a point tho.........How could we possibly know our own symptoms/bodies!!! It beggars belief that you can near enough pinpoint the exact cause of symptoms and they treat you as if you have two heads. It's happening too often now and you read so much about it on this site. I myself was ignored and treated like a hypochondriac for 3 years, now I've been left with lung damage and 48% gas exchange.

I'm surprised your feathers haven't sprouted wings, shocking. X

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You're so right - so many here have had to cope with the same indifference to what we are saying. I dread to think where I would be without the support of you and everyone else in this community, challenging, sharing, fighting, encouraging...go us! x

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Go us indeed!! X

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Same here. I asked for some tests after struggling with immono drug and results were filed. I too had assumed they were ok . Turned out all way below and needed action. Well done your determination paid off and hope you feel better soon. I wonder if a consultant can get through a whole clinic without mentioning fibromyagia these days,. Lou xx

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Lol :) Did you get things sorted out in the end? x

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Had to stop taking the mtx and waiting to see a consultant to see where we go next. Meanwhile steroids had to go back up and struggling a bit I must say. Lou xx

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Ah, that's rough. Good luck x

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So glad you now have an answer Mike.

But just watch, I had a synacthen test five years ago which showed abnormally low function, adrenal insufficiency. This was after just a few months of very low doses of hydrocortisone, not even Pred. No one actually told me the result till a consultant found it on looking back my notes.

I always keep plenty hydrocortisone in the house as I have never yet been offered an epi pen, nor does anyone show much interest in giving me one!

I am going to bring it up in a couple of months with my new rheumy as I am terrified of been sick and vomiting, losing my daily doses of steroid, and having an adrenal crisis.

I have had a few scarey episodes, once after cutting myself on my hand and another time when my steroid levels were low and I also had an infection.I am currently on 80mg Pred injections every three months, 2.5 oral Pred per day and also 10 hydrocortisone.

Like you the steroids seem to cause profuse sweating and my system doesnt like them at all ,but I have to take them.

The grand plan from my new gastro is to swop me to azathioprine as I also have autoimmune pancreatitis. After three months on that they will reduce the steroids but the gastro has said I will always need the hydrocortisone due to Adrenal problem, so I was relieved she knew about it.

I would feel much safer though if I had an epi pen just incase. After I cut my hand I was in quite a state twenty minutes after. Fortunately I was able to keep down the extra oral hydrocortisone I needed then.

Will be interested in how you get on.

So glad the fibro diagnosis has been dumped and your suspicions confirmed. x

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Thanks cutty,

Yes, I may be just swapping one set of problems for another. It seems extraordinary that not only were you not informed of your adrenal insufficiency, but that even after your subsequent problems, you haven't got an emergency pen. My GP told me over the phone that he would be providing me with syringes and IM pred/hydrocortisone to keep at home. We shall see! x

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Really good to hear your GP seems to be proactive in getting you provided with a pen.

I am witha newish practice but have a great GP so I think I will bring it up with her too.

It is amazing that so many of us are never told when we have adrenal insufficiency.

I had a terrible episode during an angiogram when they said they thought it was a serious allergy to the local anaethetic. My blood pressure plummeted and had to be given atropine to bring me back to life!!

I now believe it was caused by very low cortisol but they didnt know I had a problem!!

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Oh my gosh Mike!! No wonder you have had such debilitating symptoms for so long! If you look back at all your posts the main problems you have described have all been symptoms of adrenal insufficiency. Its bloody barbaric what they've put you through!

Just think about the effort it took to get to your daughters graduation. Maybe that struggle wouldnt have been as tough had you actually been investigated properly, and why the foo-gee-la didn't they check the results sooner!!

I'm as mad as hell for you. Not only that but as you know I really struggle to get off pred so I'm now thinking, have I developed adrenal insufficiency after 2.5 yrs, is that possible??

Dare I ask if you are comfortable with naming and shaming the trust who totally balled this up for you?

I wrote a formal complaint about my diagnosis of POTs, I was sure it was more than POTS and granted, I had developed POTs. For a year I was told I needed CBT and there was nothing wrong with me other than POTS and anxiety. But once I collapsed at work (in the hospital where I was being treated) and they realised I had total inflammatory serositis for a whole year (AGONY), I was eventually diagnosed with Lupus. I was promised a letter of apology by the PALS dept in Feb 2017. After chasing that letter up frequently I eventually received it last week, a year and one month later. Some parts of the NHS are fabulous, but some are just shocking.

I am so sorry that you have been through such hell over these past months, I suppose the silver lining is that you now know why and hopefully things can improve.

One thing that pees me off is that when you raised the question of adrenal insufficiency you should have been tested there and then. Because, being medical, as you know, if a question is raised you do a test to exclude it as a diagnosis not fob someone off with fibro.

I am so cross for you right know I could really smack your doctor and I'm not a violent person at all and my muscles and joints really hurt! But the struggle you've been through and they've just no idea of the impact of their negligence!

Grrr

Think about a letter of complaint Mike. It may stop someone else going through what you've been through.

X

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Thank you HT, I'm about to head down to the GP to pick up the reports now. As you say, hopefully this will offer some way forward a last - but bitter experience tells me that there is a long, long way to go yet. Your story has been even more of a struggle - you've needed so much strength to keep going. It's the support and the model that you have provided (along with others here), that has helped me get through this whole ordeal. I've been up all night trying to stay calm!!! so I wont do anything about a complaint until I am feeling less angry. But watch this space! Hope you have a good day x

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Good luck, Lou x

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Well that is awful in so many ways and can’t believe how long you’ve been feeling so poorly and asking for these very investigations!

BUT I suppose the very positive point is that there is now a reason for all (most?) of your horrid symptoms and a potential recovery plan?

It’s a shame you had to take on almost total responsibility for your own diagnosis and health. I do worry about those so totally worn down by it and with less medical knowledge and ability to fight than us who end up completely ignored and mislabelled/ misdiagnosed forever.

So very annoyed on your behalf but also very pleased it may be an important part of your autoimmunity puzzle and you can start moving onto proper recover 🙂

X

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Thanks Melba,

Yes, some of the posts that pop up here worry me not so much because of the symptoms and the suffering they describe, but because it's so obvious that they are in a place where getting access to good information and support is so hard for them. On top of the bigger situation around poverty and wealth, education and so on, there is something very wrong in the doctor-patient relationship in so many places. So few of us are encouraged to be full partners in our own treatment. Thanks again; hope you'll keep posting here to let us how you are getting on x

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Yes that’s exactly it. I often see on here that it’s you providing better support and advice than most people’s doctors!

I’ve just submitted my proposal for funding for a study on these diagnostic delays and misdiagnosis and would really appreciate your input if you’ve got the time/ energy to look it over please? Now I’m improving health wise I feel an enormous sense of responsibility to do what I can to raise awareness and get these stories into the academic/ clinical world to hopefully improve the situation. I’d really appreciate advice from someone with your knowledge, intellect and experience. If you message me your email I could email you the proposal please? But don’t worry if you’re too exhausted by your current battles - I’ve been there myself 😬

I’ve just been diagnosed with a primary immunodeficiency disease of a genetic defect in my complement system. It’s a bit rubbish but also very useful to know as it makes everything much clearer - more pieces of our own autoimmune puzzles fitting together!

Sorry you have to go back in the pred - how much are you on now? And so frustrating you weren’t listened to when you raised this with your rheumy ages ago... We have to be so tenacious when all we want to do is lie on their floor (I have actually done this twice!!) and be made better!!

X

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Cough... cough! Sorry had to clear my throat. Seem to have some feathers to clear! 18 months! Really! Grrr! Why oh why do these clinicians ignore patient concerns? To you, well done for you persistence and skill! Finally!

D🏃🏽‍♀️

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Quite. I am due to see my rheumy again imminently. I wonder if he will persist with his Fibromyalgia diagnosis....Thank you, D x

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Out of interest, how long do you need to be on pred before you can develop adrenal insufficiency?? Any ideas??

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whisperit had signs of adrenal insufficiency after about 6 months on pred and the doctor said it couldn't be. Which of course is tripe. So - not long ...

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I believe that I have some signs. As you all know it takes me about 4-6 weeks to reduce by 0.5mg but I never reach a point where I stabilise. I'm always left feeling worse on a lower dose and in far more pain.

Should I ask for a test and who do I ask?? I've been on pred since sept 2015 at doses ranging from 20mg-13.5mg. I've also had a lot of Depo injections and two emergency pulses of IV methylpred. Sorry to steal your thread Mike but maybe I'm struggling for the same reason that you were?

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What dose are you on now? If you are still above 10mg I doubt anyone would do a synacthen test as that is above the physiological dose and your body wouldn't produce any cortisol anyway - it only makes it if it is "told" it needs it because the pred dose is less than about 7.5mg. Even if you had total adrenal failure all they'd do is put you on up to about 10mg pred or the equivalent as hydrocortisone.

Maybe asking for a referral to an endocrinologist might gain something. Although the obvious answer here is that you need the dose of pred you need to manage the inflammation that is causing the problem.

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I'm on 13.5mg right now. Main problems are the fatigue monster which I am tackling with tai chi and fresh air. The second big problem is muscle pain. A recent EMG showed total muscle myopathy. I am being investigated for myosytis and am waiting for the full reports plus reports of femur and cardiac MRIs. When it gets really bad I lose the use of my arms as they are too painful to lift and I feel like I need t to split them open with a knife to relieve the tension. Diazepam can sometimes help the pain but it really is terrible.

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If you have myositis then that really does cover an awful lot of what you describe. And if it is an autoimmune underlying cause - that will keep the fatigue monster oh so happy. But adrenals at present? Least of your problems at 13.5mg - but if you are a 50% bioavailabilty person - maybe it just isn't quite enough? You never know.

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I was so sure that i had a hormone problem of some sort that wasn't being picked up that I splashed out and got the home testing kits for thyroid function and saliva cortisol from medichecks.com. They showed elevated TSH and depressed cortisol levels - which had not been picked up by my routine blood tests (one reason for that may have been that our levels vary through the day and so a series of samples - like the saliva cortisol test - is more likely to capture an abnormal result. Once I had those results, I hot-footed it to the GP, who ordered some "proper" bloods, which confirmed them. This coincided with my rheumy making the referral to the endocrinologist - just to shut me up, I think. By then had my GP on the case too. x

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So sorry to hear of your struggles you should complain about the way you have been treated doctors shouldn't be allowed to get away with these things too many dismiss what their patients say . I continued to get ear infections in my ear following surgery to remove my eardrum , I had an acoustic neuroma removed in 2008 and had lots of problems with leaks of CSF fluid from my scar and ear in the following years eventually having surgery to remove my eardrum and seal up the ear . The ent surgeon said this surgery would solve all the problems . I continued to get ear infections in the scar and inside my ear , I had been discharged by ent but my rhematologist saw the inflamed scar and asked him to see me again . He treated me as if I was neurotic said my ear was fine and the scar looked fine , antibiotics had cleared the inflammation by the time I saw him , he actually tried to blame the lupus for ear infections saying I was prone to infections because of lupus . He said I will do an MRI test just to put your mind at rest but everything is fine . Had MRI , there were two white patches on it , can't remember what they said they thought it was , something beginning with a C which would need further surgery but they wanted to leave it for a year to see if it changed . Fortunately after the year the MRI was clear but the point is there had been something there and whatever it was , probably left over infection inside following the surgery , it was that that was causing the recurrent infections in my ear as they stopped a few months after the first MRI although I did get a mastoid infection last September and had to be admitted for IV antibiotics . There was also the incompetent gp who sent me home with amoxicillin saying I had an ear infection when I actually had meningitis , that one nearly killed me , I was so sick when I went to see that gp I could barely stand , I asked the chemist if he would bring the antibiotics out to the car for me , I then drove home , how I don't know , a few hours later my son found me unconscious , a few hours after that the hospital rang my children saying they didn't think i was going to make it . Sorry to ramble but I know how you feel doctors are supposed to help us not make us worse . I've just looked up adrenal deficiency , my rhematologist at my last appointment told me that I can never stop taking steroids because i have been on them for so long ( 15years) I wonder if the reason is because I might get adrenal deficiency , i have only been on 5mg for years now although I up them for a few days when I feel a flare coming on , I want to stop them because I have osteoporosis now as a result of permanent steroid use but he said definitely not .

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What a terrible ordeal, Buffy14. And recurrent ear infections must have been hellish. I'm also at special risk with long term steroids owing to the multiple femur fractures I sustained a few years ago, and all the metalwork that remains. Add very poor mobility to that, and you have a risky mixture. But there doesn't seem to be any alternative - I guess we just have to be punctilious about taking our vitamin D and good, bone friendly diets. Thanks for your thoughts x

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Im shocked to read your post and hear how badly the system has let you down. Alongside the anger must also be fear and mistrust of the very people with whom you entrust your health and wellbeing. It's very sobering. I'm glad you now have some answers and I agree with the others that some form of recourse is necessary - whether that be a formal complaint or carefully worded letters that address the failings to your rheumy and GP practice whilst still enabling you to work with them. Clare x

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Thanks, Clare, you're exactly right. I don't blame the GPs, but my next rheumy review is going to be tricky.... ;P

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Cannot believe the incompetence of these “professionals”. Feel incredibly sorry for you.

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