PMRGCAuk
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Query Secondary Adrenal Insufficiency

Hi Everyone

I thought I’d start a new thread following my post on Friday regarding my Synacthen Test & possible secondary adrenal insufficiency.

Brief History

I’ve been on Prednisolone since February 2012 but l started with PMR Symptoms in October 2011

I’ve had an up n down relationship with Pred, never succeeding to get below 5mg (albeit l did try unsuccessfully to get to 4.5mg on DSMethod) l have also been on Methotrexate twice as a steroid sparer & am currently still taking it.

At the beginning of last year l noticed:~

l was avoiding people who were negative as l found they made me feel worse than l was.

I was intolerant of TV Programs, ie a new series ~ if it didn’t grab my attention then ‘Off’ no second chances

I love music, concerts & the theatre but my interest waned, l stopped booking tickets citing I’d be too tired or I’d seen them before (so not me)

If l was/am reading or writing & someone asks me a question, l have to stop, clear my head & then concentrate on them, this is from a person who was previously a Multi Tasker Extraordinaire

I started reducing my plans for each day, ie one thing a day as too tired to rush from one place to another

In fact everything was/is now at my pace, l knew l couldn’t/can’t rush as l start to perspire & then I feel worse, l’ve started giving myself an extra half hour to be ready on time & that helps.

I’d slump in the chair most of the day if left to my own devises & l was getting no pleasure from anything.

My GP Retired & l went to see a female GP in the practice for my routine check up & l mentioned how l was feeling, she asked me lots of questions & asked me to return in a week, when l did she explained she thought l was depressed. She thought PMR, Retiring Early, Breast Cancer, Mastectomy, Chemotherapy, it’s long term implications & side effects were enough to bring anyone down. So l duly started the Antidepressant’s & gradually my mood improved but not much change energy wise.

I find I’m ok in short spurts l call it getting ‘Angela Out of the Box’ 💁🏻‍♀️

But if l have a busy day either socially or just doing tasks l find the next day l’m beat.

I also find travelling any distance in the car very tiring, we stop regularly for comfort breaks & to stretch my legs.

We’ve just come back from holiday & we took the trip in easy sections, left a day early to travel to airport & stopped overnight before we flew. However, l felt so tired & below par much of the time, l can’t handle the heat anymore, it was like someone turned on a tap & all my energy drained away, l also had several episodes of excessive perspiring where my face & neck were so wet l had to get a towel to absorb it, l’d also had beads of perspiration around my wrists.

There were a couple of evenings at dinner where Terry asked me if I was ok as he could see the change in me, l describe it as my body searching for Cortisol, a bit simplistic really but l think that’s exactly what it is!..........

We didn’t take any trips out n about but mainly stayed on the ship, watched a movie in the afternoon, read & made some plans for our impending house move.

The move is being handled completely by professionals, l’ve just packed my shoe & bag collection ha,ha! I have a collection of Art Deco porcelain ladies that l won’t even let Terry touch so l want to pack them too but as for everything else, I’m going to leave it to the men!

I probably have other issues but can’t think of them right now, my mood is good but that could be down to the Antidepressant but physically l’m wrecked, l read what my friends do, where they’ve been etc & l feel like I’m losing out. I present a good front but honestly sometimes I’m not sure how l do it.

I believe the PMR is in remission or at least under control.

My husband says My Get Up & Go has Got Up & Gone!

I’d be interested to read your stories & experiences.

I have re-shared two links here that Mrs-CJ & SusanEleven posted as they are very interesting & thought they be easier to find at the end of this post.

Best Wishes

Mrs N 💅🏼

aka Angela x

From SusanEleven

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

From Mrs-CJ

nadf.us/adrenal-diseases/se...

21 Replies
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You certainly have been through the mill, I think I would be depressed if I had half of your medical problems. I was diagnosed with PMR on February 14th of this year (great valentine present) and constantly battle with fatigue. Hoping to get back to work early next month with reduced hours and regular breaks. In the process of being investigated for ovian cancer and feel the waiting for the results is the worse. Like you I find I can not do as much, washing my old VW campervan the other day left me exhausted and I could only do half of it!!! Very very frustrating as I like to finish a job. All I can say is take one day at a time and try not to do to much.

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Instead of plumping straight for "depression" it didn't occur to your GP to do a synacthen test and see how your adrenal function is? 5mg is a very low dose - the equivalent of a maximum of about 4mg cortisol and probably less. The body needs more like 7mg to function well and for some people they need more. You have been on pred a long time - and it wouldn't be surprising if it were.

Two years ago I struggled at below 5mg, felt as if I was wading through treacle and went back to 5mg. A few months later I had a flare and have felt pretty good since! I have got back to 8mg and feel OK - but I have tried 7mg a few times now and back to wading through treacle. And the final straw was an increase in atrial fibrillation at 7mg, almost daily episodes and lasting for a few hours leaving me knackered. Never been a problem before, far better at 8mg, totally absent at 9mg. So until I see my rheumy at the end of May I shall not be toying much with 7mg.

Have you any other signs and symptoms of secondary adrenal insufficiency besides what you describe?

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Hi PMRpro

I was impressed she’d picked up the fact l was low, to be honest a lot of factors pointed that way & l was warned by my Oncologist that however brilliantly l handled the diagnosis & treatment it would in time catch up with me, so it seemed pretty logical.

The reason my Rheumatologist did the random cortisol level & ordered the subsequent Short Synacthen Test was l explained how I’d been feeling & she thought it was a wise precaution, I’m back on 7.5mg & will just wait n see what the results are.

I don’t think l have any other symptoms apart from irritability, tiredness, fatigue & getting very hot at times which makes me feel awful. There may be another explanation but this seemed a logical check to eliminate or confirm the possibility.

Mrs N 💅🏼

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" irritability, tiredness, fatigue & getting very hot at times which makes me feel awful" - sounds like PMR really ;-) But I do know exactly what you mean when it is happening and it really doesn't feel like just PMR - and the getting hot bit drives me up the wall when I have to go into a shop. Don't do it often but even so....

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But no real pain as such now, stiffness or unability to get out of bed, so be interesting to see what the result is.

Mrs N

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Exactly - I really would like mine done but am still getting the sceptical looks...

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I’m so glad I read your post. The same thing happened to me when I was on 6mg pred. I was sent to a cardiologist who did a heart scan and luckily that was normal. I thought I was going mad because when I had to up my pred 6 weeks ago (another flare), the af stopped. Does this happen to everyone? May only be people who have had pmr for a few years.

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I don't know - I have another friend with PMR that doesn't want to go away and atrial fibrillation. She can't get below 5mg without feeling awful so has said she's sticking - not sure if that has helped the a/f but she has also had medication tweaked. No more bisoprolol as it wiped her out - but has never bothered me at all.

Vasculitis can make a/f worse - and my cardiologist is confident it was the autoimmune bit of PMR that damaged the electrical cells and led to a/f. So if the vasculitis part is flaring without causing PMR-type symptoms, which it can, LVV can be pretty non-visible so gets ignored for a long time, maybe it does more damage. I do know that being on enough pred is far preferable to the paroxysmal a/f!!!!!

I have a growing list of things I really really would like to see looked at in connection with PMR/GCA. Not least how many of us with stubborn PMR and add-ons really have LVV that has never been looked for.

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Yes, would be good if there was more research into pmr. When I was first diagnosed I was so ignorant of the minefield I would be entering. Thank goodness for this site!!

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That’s for sure, we’re like trail blazers really! 😂

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There is a fair bit going on - but I do know that I have picked up a few things in 9 years on the forums that have surprised doctors. Bladder involvement for one thing.

I invited myself to the NE of England's launch of their DVD and 9 years on the question I asked Dasgupta at the Q&A session is now the subject of one of the research papers I quote quite often. To me it was obvious that there was a link between PMR at one end and GCA at the other - there is, large vessel vasculitis. Husband's fields of interest come in handy at time!

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Hi Suet

That’s kind of why l posted this because sometimes you feel it’s just happening to you.

I’ve just been to lunch with ‘The Girls’ & l didn’t hold court or tell lots of funny stories like l usually do, just not up to it.

It’s 8’C here today & l felt as bad as l did last week in 28’C+

I really feel really ‘unwell’ l have nothing planned now for a week so l’m going to chill & relax, then hopefully l’ll feel a bit better.

Take Care

Mrs N 💅🏼

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Oh you poor thing Nrs Nails. I know that feeling so well. My friends have often mentioned that my get up and go has up and gone. Differs from week to week. Not too bad this week. Take care

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Thanks Suet ~ Great Name xx

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Hi MrsNails, listen to PMRpro, she always has such good advice, by checking your cortisol levels that might be the answer. maryanne

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Hi MaryAnne

My cortisol levels are low following a random cortisol level & I’ve now had the Short Synacthen Test to check further.

I wrote this new post following the responses to that post, just to keep it more specific.

Thank You

Mrs N 💅🏼

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Thank you for sharing your story Mrs Nails. Many bells of recognition peeling here. Lots of sensible adaptations in there. I hope your move proves to be a wonderful thing. We are not missing anything, we are just having a different kind of adventure and probably noticing far more.

Tell us about the results of your Synacthen Test when they come.

Take care. 🌺🌸🌹

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Will do Jane xx

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I indeed understand where you are coming from. You have had some very hard years. I have just started on medicine for anxiety. I have managed pmr pretty well for two years I thought. I think it's about gone as pain and stiffness not issues too much. I am at 7 and retire in a few months. Mentally and emotionally I can no longer do the work. My thinking has gotten obsessive so it was time to try something. More side effects to deal with and to hear it will take me several more years to get adrenals back to normal is a bit disheartening. And the Drs say take the steroids and you'll be fine. Ha!

Thanks for the info. It's better to know.

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I think to assume it will take "several years" for your adrenal function to return is a bit OTT - for the vast majority of people they need the pred for the PMR/GCA for as long as they need it, an average of up to 5.9 years but with a wide range overall, and the final taper down to get off is not too bad. But to think that you are rid of PMR after 2 years while still being on 7mg may be far wide of the mark.

Sorry if you find that depressing but it is the reality of PMR.

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Hi,

When you meet with the doctor about your test results perhaps you could question her/him about anything we can do to help “wake up” our sluggish adrenals.

For example, what kind of tapering do they advise. We assume they will advise extra slow and careful. But should we try to keep just under what we feel most comfortable at so that our body will realize that the adrenal system needs to pick up the slack.

Or might they advise a taper that juggles the adrenals.....such as taking the comfortable pred dose but at certain intervals taking a lower dose....just to poke at the adrenals and remind them to get back in the game.

Just brainstorming and tossing out some perhaps questionable ideas.....but please don’t be afraid to get all the info you can from your adrenal doctor....and pass it along to us!

I am looking forward to hearing your results and next steps!

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