Synacthen test result. Furious again!

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

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😘🍀😘🍀 coco

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

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...

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

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

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

Go us indeed!! X

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

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

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

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

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

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🏃🏽‍♀️

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

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 .

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

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