PMRGCAuk
7,382 members12,105 posts

Synacthen Test Results

My Consultant rang me yesterday & l do have Secondary Adrenal Insufficiency, l thought as much because l feel so exhausted.

She is referring me to an Endocrinologist & thinks as they will possibly consider changing the Prednisolone to two different types, one longer lasting Dexamethasone (l took that during Chemo) & a short acting one Hydrocortisone but it’ll be up to the individual Consultant, have to wear a MedicAlert Bracelet too; there’s always something!........

Mrs N

110 Replies
oldestnewest

Hi MrsNails,

How was your secondary adrenal insufficiency confirmed? And why did your doctor search in that direction?

Reply

Hi Alliand

I’ve been feeling awful for sometime, I’ve reduced what I do to only one main thing a day, never going out in the evening etc.

I was down at 5mg & had a very busy, exciting week & the day following our Ruby Wedding Anniversary Party l just felt so, so ill, l could not get out of bed, there’s a long story about going to A&E on Race Day which l won’t bore you with!

So, l went to see my GP on the Monday, she increased my steroids with instructions to head back to 5mg as soon as l could without making myself ill.

At my next appointment with my Consultant l told her what had been going on & she decided l should have a random Cortisol Test which came back low & then she ordered the Synacthen Test.

I’d been feeling low & tired last year & my GP thought l might be depressed so l started an antidepressant which did have some effect but still the tiredness persisted, so l think it’s been going on for some time, l’ve felt my PMR has been under control or possibly in remission for about 9months or so.

The Synacthen Test has confirmed that my Cortisol Levels are low even when l had the stimulation from the Synacthen Injection.

Hope that answers your question

Mrs N

Reply

Hi MrsN,

I was unaware of such a test ; I thought there must be one b/c prednisone supresses natural cortisol, and that would be something that should be followed with people on prednisone, or at least as they taper below what would be natural secretion which I thinks is 8-10 mg/day in good health.

As you we're on 5mg., you were below normal secretion level I think, and your adrenals have not kicked in with enough natural cortisol yet.= fatigue. It takes a long time. I think it has to get worse before it gets better with prednisone taper and return to normal adrenal function. Stress is the worst thing for adrenal insufficiency.

I am glad your PMR is in remission; I think your fatigue is physiological ; do you feel better on a higher dose of Prednisone?

I am like you; cannot do much; just do what is absolutely necessary; I was so active before; I am on 8mg. and feel really lousy. I will stick with tapering, and also on methotrexate once a week. And my blood counts are really off as well.

Good luck; don't let others make you feel guilty for the way you feel.

3 likes
Reply

Hi,

Sorry to hear that... but I suppose, now at least you know what is causing the fatigue.

As for medical bracelet, you can get some nice ones on line, I wore one all through my GCA days, and now just use the chains attached to another bracelet. But then I am a bit “blingy”.

Take care.

3 likes
Reply

I’m a bit blingy too & I’ve checking them out on line!

Yes, at least now l have a reason for feeling like l do, l can get Angela out of the box for a couple of hours a day but after that!........

Thanks DL

Mrs N

2 likes
Reply

Hopefully you will feel a bit better once the treatment sorted. O think it's karools who had same dx and will no doubt be along. O believe she choose to remain at 7mg of pred as other meds didn't suit. But I may be wrong and must learn not to speak for others!!

You will be able to find an SOS style that suits. You can link some up online and they store and update your illnesses and meds. I went with a stainless steel bracelet when I first got one nearly 18 years ago for diabetes. I couldn't stand metal on me at one point so went through several rubber ones. My sister has a silicon and engraved metal one for allergy to stings. There are some nice blingy ones but part of me went with the traditional so emergency services could see it straight away. The inserts are TINY.

I hope you start to feel less fatigue etc soon.

2 likes
Reply

Yes, karools was switched to hydrocortisone and found it awful with regard to side effects so asked to return to pred where she is fine.

polkadotcom who used to be an administrator on the forum was just left on pred, I have to say - I can see no good reason for dexamethasone plus HC. I'd rather stay on pred. HC is a 2x or even 3x daily dose which is supposed to better reflect what would happen naturally (most in the morning and a spike in the afernoon).

I've been told by a few rheumies it is vanishingly rare for adrenal function not to return and when I told them I knew of at least half a dozen people out of maybe a thousand or so on the forums who have secondary Addisons they were flabbergasted. Maybe this is something we need to prod them about.

5 likes
Reply

I have had 2 sub optimal Synacthen results. The first time I started taking HC but found that I didn’t last through the day. I went back on Prednisone. I have reduced now to 2.5 mg, however I am not doing so well. I have constant pain in my thighs; by the end of the day I have pain in my upper arms and shoulders. My shoulders are also painful during the night.

I am persevering as I want to be off Pred because of the side effects I have. I still manage to get out on my mountain bike, which has the effect of making me feel better in myself.

It’s very interesting reading about people’s heart problems. I have developed elevated ST waves since being on Pred.

Reply

"I am persevering as I want to be off Pred because of the side effects I have."

The pain in your thighs and arms and shoulders are almost certainly a combination of the dose being too low and letting the PMR inflammation mount up and possibly asking the muscles a bit too much with the mountain-biking. If you force the reduction you will very likely end up in a full blown flare and needing to go to a higher dose to function. I don't know if you still remember the start of PMR - I do. Side effects of pred or not I have never felt they were too much to let me risk going back there.

Almost all pred side effects can be managed when you know how - and at doses below 7mg or so should be negligible. If you tell us maybe we can help.

1 like
Reply

Good morning from New Zealand PMRpro. Thank you for your time to reply. My side effects are glaucoma, Osteopenia and cataracts. I understand what you are saying about causing a flare; I certainly do remember my beginnings of PMR. I can’t see how I address these side effects. It’s difficult getting enough calcium on board with my diet being reduced after having my gall bladder removed.

I don’t think my Rheumatologist believes that PMR can last longer than two years, so it’s been an uphill battle with her to agree to me staying on the Pred so long (3 years now). I have told her that it’s not her that suffers from the symptoms!

I have slowed my reduction as my original plan was to reduce by half a mg every 2 weeks. I now reduce by the same every 4 weeks as long as I am symptom free at the time.

Again thank you

Reply

You were very probably osteopeneic even before starting pred - I (and many others) were, it is perfectly normal for our age group. My t-scores were between -1.1 and -1.3 over 8 years ago when I started pred and after over 7 years on pred, much of it at above 10mg my t-scores were -1.5 and better. Still not requiring treatment, and that was just having taken calcium and vit D, no bisphosphonates. There are different forms of calcium supplement - have you checked with your gall bladder consultant as to whether any are suitable for you? However, vit K2 and weight bearing exercise with a calcium-containing diet can also help improve t-scores, HeronNS is the resident expert there! And you should have been referred to a dietician for advice.

Glaucoma? Or raised occular pressures? That is different and we should be monitored for raised pressures as pred CAN raise them but probably only in people whose pressures woud have risen anyway. They can be held at acceptable levels with eye drops so regular eye checks are essential. It doesn't always happen - mine haven't changed at all.

The same applies for cataracts, theough they are actually the only effect of pred that is found more in PMR patients on pred than in a matched population not on pred. And after all, they can be removed easily and once they are gone, they never return.

Your rheumy may be interested in this paper (she should be if she isn't):

medpagetoday.com/rheumatolo...

a study showing that PMR has a median duration of 5.9 years.

Good luck!

1 like
Reply

NZSHez Hi I'm like you, I'm down to 2.5 mg and I have a lot of thigh pain and upper shoulders, everyday I keep saying I will increase my dose but keep putting it off. I had my bloods done CRP was 3 and ESR was 5 that's up 2 since last had blood test, that was January. My pain always did reflect on blood levels, like if ESR and CRP were up I would definitely increase my dose, because these levels were over 100 when I had GCA, and PMR.

I woke up durning the night and shoulders were bad found it hard to turn in bed, I was going to get up and take 10 mg pred, but I didn't ,

I know people would say why don't you just up your dose, but I had so many side effects. I take ginger and most anti inflammatory foods, but not sure if it's helping, I excerise and try and work my muscles, I have an appointment to have a Holter monitor fitted not till next January. I've had strange feelings in that area. Good luck

Reply

Why not try just going to 5mg first - no point going higher than you need and many doctors suggest adding 5mg to the point where a flare appeared. If 5 doesn't help then add the full 5mg - but these are still low, physiological doses, less than your body makes naturally.

"I have an appointment to have a Holter monitor fitted not till next January" - is that right or a typo? A 9 month wait for a Holter monitor when you have had symproms?

Reply

Thanks PMRpro your always there when someone needs you. I'm more afraid of CRP and ESR going up than the pain, they were very high when I had the problem with sight,

I take 2 oz of ginger everyday for past 2 years, I do think it keeps inflammation levels down or rather the CRP and ESR down, its strange I didn't take ginger for a week cause I was away and CRP and ESR were up, at that time I was back with rheumatologist and she wanted to increase my dosage to 20mg, but I was on 3.5 mg then and I did increase to 5mg and had my bloods done and the CRP and ESR were normal, and still had some degree of pain.

I mean if I sit down I've no pain it's only on movement, when I get up I'm so stiff I can't walk, when I loosen up I'm fine, but still have some pain but bearable, like I'm best on the move all the time 😄 And don't have real problem with fatigue.

Are we suppose to be completely pain free?

Reply

But the CRP and ESR are only telling you much the same as the pain is: there is something wrong somewhere. But SYMPTOMS always trump lab results.

No, not everyone is totally pain-free. But what you are describing sounds like the early stages of allowing your symptoms to flare. Whatever result you managed to achieve with the starting dose of pred is basically what you are looking to maintain as you reduce. You shouldn't feel worse at the end of a reduction than you did at the beginning. If you started on high doses because you had GCA, then the way you felt at about 20mg is your guide for PMR as you get lower. The fatigue is something different - the pred has no effect on that at all.

Reply

Thanks PMRPro yes that's the appointment I got for the Holter monitor. January 2019. I'm back with rheumatologist on 30th April , I might just try 5mg and see how it goes,

I mean is your muscles a lot weaker as a result of pred, and maybe they would hurt a lot more after excerise or would they? What I mean is, when I work my legs or arms I'm not sure if pain is from the working out or from the PMR and GCA ? But then I suppose if it's from a work out it would only last a couple of days, don't mind me I just looking for another reason for PAIN and not PMR

Reply

Your muscles remain intolerant of acute exercise - the underlying autoimmune disorder is still attacking them despite the pred and are not only unable to tell you you are asking them to do too much but also take much longer to recover. It is importnat to know your limits and not exceed them and to build up your training from a very low level at first. It will happen - just not overnight! You develop DOMS (delayed onset muscle soreness) much more easily and it takes longer for your muscles to recover. That is why the pain lasts so long.

I'd suggest doing a bit less for a short time and letting the pain subside. Then start your training program very low and build up very slowly to find your limits. Like reducing pred, it doesn't mean you won't get further - just it will be slower and not yet...

Reply

Thanks PMRpro it certainly makes sense alright, so is muscles weakened or damaged as a result of PMR, I get confused by it all, like the inflammation caused by PMR and GCA affects the blood vessels, and as a result of that you have reduced oxygen going to the muscles.

PMR affecting smaller blood vessels and GCA affecting larger vessels, like arteries, is that right?

Like I started off with neck pain, flu like symptoms, and then pains in my thighs, which got worse, I couldn't get off the chair, I was diagnosed with PMR first, I was on 20mg and felt grand, I was on dose for 2 weeks, and then they reduced me down to 12.5mg within 12days,

That's when I got the jaw pain, arteries in temple very prominent , and then bad headaches, had a positive biopsy, I was on 60mg but this abviously wasn't enough, my dose was increased to 80mg because of loss of sight but I was so lucky it returned.

But when I was at consultant, a couple of months ago, he claims it was GCA I had from the start, ???

Just wondered like is the pain you would have from over working muscles without having PMR and GCA the same as pain we get from PMR?. Like when I first had the pain in thighs, I was convinced I had over worked my muscles as pain seem the same.

Sorry PMRpro about all the questions.

Reply

It probably was GCA - but PMR can be a symptom of GCA.

The pain from overworking muscles is called delayed onset muscle soreness - google it. Training involves tiny tears forming in the muscle fibes - when they heal the muscle is stronger and can do more without pain. In PMR this process doesn't work as well and so it takes longer to heal and the pain to go away. If you cause just tiny amounts by training VERY slowly it doesn't hurt as much but in the end you do get trained - and can do lots more.

Reply

Thanks PMRpro for all the information, might just do nothing for a week, and see where the muscles are at? Look after yourself

Reply

During my undiagnosed year I thought the pain I had in my muscles felt like I had exercised too much, but it never went away, so in my experience yes, the pain of PMR is like the pain from over-exercises muscles. Eventually, of course, it got much worse, with a frightful stiff neck and hardly being able to move, but I had the "exercise stiffness" for many months before I got really disabled.

Reply

Thanks HeronNS I'm just always curious as to what actually causes the pain?? I've had neck pain and stiffness almost like burning from the start, but wears off as day goes on. That's why I get confused, I don't know weather the pain is a result of over working the legs and shoulders, or a flare??, but might take it easy for a week like what PMRpro said and see if pain is any worse or better, you take care

Reply

Nothing wrong with "blingy" 😍

4 likes
Reply

Oh bless you Mrs Nails! At least you know for sure why you have been feeling so wiped out. Do you know any more yet? I hope the drug combo will put you right. Keep in touch. I often think this is looming for me. I had Thyrotoxicosis in the 80’s.

1 like
Reply

I suspect it is for me. Over 2 years ago I was great at 5mg, OK at 4mg, half dead at 3.5mg and it wasn't PMR. Now I'm great at 9mg, OK at 8mg and half dead at 7mg. But what is really bizarre and concerning is that at 7mg I have atrial fibrillation much of the afternoon and short sort of waves of weeeeeeeeeeeeeeeeeeeeeeee! (if you know what I mean). They only last a few seconds but happen more and more as days of 7mg go on. At 8mg they are much better but still happen, At 9mg I'm fine. Since I have not been/will not be at home I can't speak to either rheumy or cardiologist - so I shall stick at 9mg until the end of May. But this is all something very new!

Reply

That's interesting, when I reduced to 4.5mg from 5mg I had a strange fluttering from what I think was my heart and I felt very strange somehow in my chest. OH took me to see my GP and had to wait in surgery for about an hour before they decided to see me. By that time the symptoms subsided so they couldn't find any problems. But now and again I feel as if my heart skips a beat. But fortunately it's not continuous.

Reply

I know at least 2 other people with exactly the same effect, a/f at lower doses, goes away at higher ones. Otherwise I would have though I was going even more nuts than usual!

If it happens again - call 999. For heart stuff they do have a fairly speedy response and paramedics carry ECG machines. It is the best chance of getting a trace. Paroxsysmal a/f or any other arrythmia is a nightmare to identify. Mine is almost certainly due to the autoimmune part of PMR having damaged the electrical cells that govern heartbeat.

GPs are useless. Just as well you weren't having a heart attack...

1 like
Reply

Heart attack, that's what I thought and that's why I got OH to take me to the Docs, infact just about half a mile away. When we got there I asked for an emergency appointment. The receptionist said I would have to wait to see someone. After about 35 mins a nurse called me in for a trace. After about another 30 mins the Dr said the trace was normal. But by then I thought it had stopped racing anyway. He said if it happens again I had better go back. So I think you're advice is the best line to take. I despair sometimes about the quality of our health service.

1 like
Reply

Your penultimate sentence ........'autoimmune part' ....... has set me thinking PMRpro. A few months ago, 2yrs 5mnths into my GCA/PMR journey, out of the blue I experienced a horrid episode in which all strength and movement suddenly and instantly disappeared from my body. I went to ground, couldn't speak or move and my heart started beating so violently, without a pause, at such speed I didn't think I'd survive. Thought it was probably a stroke. House was empty, OH in garden, came in later, saw me on floor, realised I was totally incapacitated, took my pulse (upper 100's), phoned local GP surgery. Summoned help, between them managed to shovel me into vehicle straight to surgery where ECG confirmed AF. Warfarin prescribed, inr explained and home again feeling totally wrung out. Two weeks on, small hours, blue light to A&E, myocardial infarction, stent fitted, NOACs etc prescribed, home again. Prior to initial GCA/PMR diagnosis, fit and healthy 70+ yr old. I'd suspected yet another pred side-effect but your explanation of ai damaging electrical cells has given me food for thought. It'd be interesting to know if any others of us have had similar experiences, are you aware of any? Now just over 3 years on pred, with one year of methotrexate which was stopped (it didn't lessen any pred side effects) I'm down to 2mg daily and following DL's dead slow reduction plan. The info on this forum has been such an eye-opener.

2 likes
Reply

There is an increased rate of cardiovascular events in the first year after diagnosis of vasculitis, especially GCA - a fact usually ignored by most doctors. I did ask a top specialist about it and AF but got "It's still a very small risk and AF is common in that age group." That wasn't what I asked - I asked if the rate of AF in PMR was higher than in a healthy population. It is known and acknowledged these things are more common in RA for example - but PMR remains the poor relation.

I wonder if your drop attack was due to a long period of bradycardia (slow heart beat) preceeding the AF? I'd had palpitations but quite mild and short episodes right from the start of the PMR symptoms but they were so mild as not to give rise to any more than "It'll be your age..." when the GP didn't find anything when feeling my pulse. For many patients who have palpitations the alternative excuse given is "It'll be the pred..." and no doubt that is what my GP would have offered - except I wasn't on pred so he couldn't.

We do need more monitoring I believe.

1 like
Reply

Thanks for the extra info, yes, we do need more monitoring BUT, NHS and all that!! Nuff said!

Reply

Happened to me too, at about 4 mg. Doctor basically dismissed my concerns. Taking matters into my inexperienced hands I decided to consume more salt, Continued tapering, Fluttery feeling gone, but my blood pressure although still normal is higher than ever before in my life, I think it is now only borderline acceptable, So, less salt on the morning eggs now. Would rather keel over from faintness than have a stroke.

3 likes
Reply

Hi HeronNS, yes an interesting subject. I read an revealing book on Kindle. Title is; Too Little Salt: Ten Annoying Symptoms. By Sally Getting. 🙂😎

Reply

Thanks. Looks like it is only available as a Kindle, so can't actually read it myself (have a Kobo). May be able to get local library to acquire the e-book.

1 like
Reply

I was on 6.5mg & have gone up to 7.5mg today, GP said go to 8mg but l’m keen to keep a coated 2.5mg in the mix to spread the Pred out a bit, not sure if it helps but worth a shot.

Hope I get a soonish referral as we are moving House & going over the border to England from Wales & the issues that will cause!

Thanks PMRPro for all your sound advice & knowledge.

Mrs N x

1 like
Reply

Oh dear...

I have a list of UK regions I wouldn't live in. There are fewer and fewer!

1 like
Reply

We once considered returning to England when we retired (that was 18 years ago). We lived in the Cotswolds (our son lives there too). From what he reports it’s not the Cotswolds we knew - beautiful, of course, but FULL and lots of traffic. The “village feeling” has disappeared in a lot of places.

Also the health system in many places isn’t the best.😏

1 like
Reply

My GP & Rheumatologist are brilliant plus I’m still on annual F/Ups with Oncologist & Breast Surgeon but l felt l cannot keep my life on hold any longer, we hope to be moved house in time for the arrival of our first Grandchild in July.

My GP says they can get all my care transferred & l can stay with my Breast Surgeon anyway as l had my Mastectomy in England, we currently live on the Wales/England Border.

Fingers Crossed it all works out!

Mrs N x

3 likes
Reply

I know the whole of England isn’t in a mess, but we live in the past. It’s 47 years since we moved abroad and we just don’t know how we would fit in to the new England. We hear many stories of how good the NHS and doctors are in certain areas but, unfortunately, many MORE where health care is not as it should be.😏

1 like
Reply

Yes sadly it’s true for routine but if you have Cancer the Service cannot be beaten, likewise Strokes & Heart Attack’s

Just hope l can find a new GP l like & trust.

Reply

Well give me PMR at it’s worst than any of those.😏

3 likes
Reply

It's a lot less since we migrated - but we feel the same already. It was hard enough returning to Scotland from Germany the first time. If I went back it would be to the north or Scotland but I can't face the weather...

1 like
Reply

We knew two Scots when we lived in England and they were always moaning about something - everything was so much better in Scotland. I asked both (several times) why they didn’t return, the answer was always the same - “the weather”.

Aren’t we two lucky? Good weather (well most of the time), great views, excellent health care. Life can’t be bad.😎🍷

1 like
Reply

A baby!! Oh lucky lucky you! 💞

Reply

I know, we’re so excited, 11weeks to wait, they decided not to know if it a Girl or a Boy until Baby is born!

My money’s on a Boy 💙 & husband hopes so as he’s afraid l’ll bankrupt us if it’s a girl as we have two boys! 💙💙

Have already ordered a Cot/Bed for Sleep Overs!

Reply

I guess a girl. Probably because I associate you with hot pink and all things feminine. Whatever gender the baby is you are in for such an infusion of love and joy!

1 like
Reply

Daughter in Law is a Hot Pink Sparkly Girl, we will have to wait & see! 💕💙

Obviously there’ll be a Big Announcement! xxx

Reply

Where are you now and where are you going to? -ish obviously...

Reply

Just over the border in Wales near Chester & heading to Telford.

Reply

I was further south...

1 like
Reply

You could always cut yourself a supply of 0.5s.

Reply

Hi Jane

I’m using the 2.5mgs as part of my dose along with 4or5mg uncoated as the 2.5mg take longer to start working (approx 4hours) in the hope it may help later in the day.

Thanks Jane

Mrs N x

Reply

Weeeee in a good way like on a swing or weeee in a bad way like falling? The artrial fibrillation sounds very wearing every afternoon. I know that you know what you’re doing and you are our best expert here and far be it for me etc.......but don’t you think you ought to see your specialist about this sooner rather than later? You’d tell us too.

Reply

A sort of mixture!

This has just been since I was on holiday and I am used to the AF waking up to play with a flare, it's happened a few times now so I'm just doing what they docs did!! They were quite flummoxed too! I saw the rheumy just a few days before we went and have an appointment soon after we get back from the UK - no way I'd have got one this week! and appointment with the cardiologist is like finding hen's teeth.

If it hadn't gone away with going back the dose I was on I would have gone to the doctor but last time I went to A&E with the AF the trace here at the house was showing something but not clear, in triage my pulse was still quite high but none of the ECG traces at the hospital showed anything. Result - sent home in the middle of the night! The AF is paroxysmal, we know that, I'm on medication that is working fine at the right dose of pred. More of the medication is too much, I can't function (betablockers and all that). What else can I do?

Reply

I would want a whole raft of tests in the Cardiology Department to ensure that nothing else was happening. My father had heart failure that he never had diagnosed until after he died. Not a man to seek help or ask for advice. He was only 69 and in the midst of all kinds of projects. On reflection there were signs. It has made me wary.

Reply

Had most of them! And am seen every year by a cardio.

Reply

New symptoms though?

Reply

Is the “weeeeeeeeeeee” feeling being wuzzy headed (like just before a faint). I often try and carry on - the result being total collapse a few minutes later. What do YOU do?

Reply

Strangely, it is more likely to happen when I'm sitting than standing! It does occur other times too - but it has never lasted more than a few seconds, like a wave on the beach washing over you and gone. Haven't collapsed yet! But I do stop what I'm doing briefly - which probably helps.

Reply

I’ve had the same thing. AF when I had decreased down to 6mg pred, so much so that my gp ordered a heart scan. All the scan showed up was a slight valve leak which the cardio consultant wasn’t worried about. 2 months ago I had to go back up to 10mg and the AF stopped. Do you think it could be our adrenal glands waking up and delivering too much adrenaline with the pred as well.

Reply

Yes, I knew someone had said the same. I honestly don't know - though it has crossed my mind that MAYBE a bit of vasculitis might be contributing to the electrical cells bouncing around, the higher dose of pred is enough to sort it out. It is bizarre!!!

However - what about the opening comment in this abstract?

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

"Use of corticosteroids before and after atrial fibrillation (AF) ablation can decrease acute inflammation and reduce AF recurrence."

Not quite the same - but it would suggest that inflammation does increase AF, and that if that is the case, the small extra amount of pred may be reducing some inflammation somewhere for us. I suppose the question is where?

The other friend with a similar problem got to 2.5mg before having to go back to 5 or 6mg. She's been switched either to a different antiarrythmic drug I think or the dose tweaked and the AF has disappeared - she'd had several weeks of almost daily AF episodes that were better but not gone at 5mg. I know if I take more of the propafenone or the other stuff my BP will be bumping along the bottom - that happened once before.

Reply

😕 bummer

2 likes
Reply

💐 what bad luck. Sending hugs.

1 like
Reply

Thanks Pongo x

Reply

I am sorry you had that result, Mrs Nails. I do hope you have a good and understanding Endo. I was diagnosed BY LETTER, and went to pieces, esp. with all the warnings. As some of the others have mentioned, I was put on Hydrocortisone 3x a day. HATED IT!!!!!!!!!!!!!!!!!!!! Dreadful tummy aches. After about 3 months, and getting worse, I said I was stopping it when I started having severe mental issues!!! I asked, nay demanded, to go back onto Pred. 4mg Pred agreed. Am on 7mg at present, because of stress, which is slowly abating.Unlike a lot of people, I had NO FATIGUE before diagnosis, after, and not now, either. Wonder what he will say when I see him in May?

Strange you mentioned the Medic-Alert bracelet. I have 1, and, tonight, it fell off my wrist, having hooked onto my pj sleeve, causing a link to break and fall. My lovely jeweller will fix it. Looking forward to hearing what the Endo will say to you. Best wishes.

Reply

Hi Karools

What a distressing experience for you, had you been having other issues as they tested for it?

I’ve had a hunch for a while as to what was going on, I’ve been on Pred just over 6years so l was a bit suspicious as 5mg is the lowest l ever been on.

I’ll look at your old posts to see what you wrote when you got your diagnosis then ask you any questions if l may.

I’m glad you’re settled back on Prednisolone, I’d be happy to stay on Pred as long as l had some back up Hydrocortisone, see what the Endo thinks.

Hope you are keeping well despite all this.

Thanks

Mrs N x

Reply

Thank you for sharing your results with us. I hope you can find a medication that works well for you.

I’m still on the wait list to see someone to get my synecthen test. It’s been so nice to hear info about this from others on the forum....it will help me have a list of questions for the doctor I eventually get to see 😊

Reply

Hi Mrs-CJ

Thank you for your good wishes, l hope you get your test soon & you start to feel better.

Mrs N x

1 like
Reply

Glad you got an answer even if it's one you didn't want

Reply

True, but at least l know now why l feel as l do & perhaps Endo might help me feel better! xx

Reply

Let's hope so! Half of this disease is always trying to figure out what's going on.

1 like
Reply

No, I had no other medical issues at the time of the test. I was actually feeling very well. My wonderful Neuro...never went to a Rheumy...said he was handing me over to the care of my GP, as I was relatively'stable', and , I think, on 3 mg Pred. I cried for days. I knew him well. At 1 time, lived in the same village, saw him and family at church, and social events in village hall.Out of the blue I got a hospital letter saying I was having a synacthen test.I refused to believe the results. If I felt so well, how could this be so?

Reply

I’m sure that must have been an awful blow for you, have they/or will they repeat the test?

My list of Consultants/Specialist just continue to grow!........

I went for an Eye Test last week & he asked me how my general health was, l’m afraid l said how long have you got? 😂

1 like
Reply

Yes, am half-expecting the test to be repeated. Yes, general health. Diagnosed recently with IBS, feel ghastly, have to watch everything that goes in your mouth. Miss my 1 cup coffee, daily.How do we know when, if, the adrenals are working, if NOT tired, and feeling well? That's what I just don't get.

Reply

Difficult, for you l think it’ll be what the bloods show if there’s any improvement, I’m a bit of my own barometer as l feel wretched if I try to do too much & l always pay the price.

Reply

I have been doing some reading about adrenal insufficiency and it’s been mentioned that low adrenals can cause digestive issues. I’ve been wondering why I’ve developed so many food sensitivities and I suspect it’s my sluggish adrenals. I’m hoping when I get the adrenal situation sorted out my digestive issues may get back to normal. I can always hope!

Perhaps your IBD is tied to your synecthen test.....just a thought.

Reply

Interesting. Thanks for that info.IBS came out of the blue, so I don't know what caused it. Seeing GP this morning.

Reply

Sorry, I meant to say IBS in my earlier post.

I have had some success taking pancreatic enzymes. First I tried some from the health food store and then I switched to a prescription of Creon. They have relieved the excessive bloating and the “unsettled gut” symptoms I was having.

My worst gut symptoms started when I reduced my prednisone below 3 mg. This fits in with what I read.....that if you don’t have enough cortisol/adrenal function you can have digestive issues. Now I’ve increased my prednisone back up to 3 3/4 and sometimes 4 so I think I will stop the Creon and see what happens (I no longer take it with breakfast and stopping it at lunch is next.)

I’m on the wait list to see a specialist to get the acth synacthen test.

Reply

I've never heard of pancreatic enzymes nor Creon. Doubtful I could take with Warfarin. My dr now thinks it's more than IBS. Am to have an abdominal ultrasound.

Reply

IBS is supposed to be the diagnosis made when everything else it could be has been ruled out! Bit like PMR I suppose. Do the doctors do it? Do they heck...

Reply

I just can't take these 10min appts any more. Longer appts are as scarce as hen's teeth. So much else doesn't get said, and you're still stuck with it. Today, neither the GP nor myself even queried what effect all these current symptoms are having on adrenals.I feel crap whether I eat or not. Soon, won't bother.

Reply

Have a lot ahead of you Angela but I'm sure you will work through it all, as you have already. Good at least you now know what is going on and I hope all goes well with your Endo. Let us know how you get on. I'm sure you're very excited re baby and your new location, which will be nearer your son. So exciting!! So a bit of a mixed bag; lovely things to look forward to and a few more difficult things to traverse; new GP and Endo appointment. Do hope they get your medication sorted out so you can make the best of each day. Best wishes Jackie x

Reply

Hi Jackie

Yes having a definite answer helps that’s for sure, l don’t feel so guilty now sitting down between tasks!

Our house move had been a bit delayed due to the Buyer & her Solicitor being very difficult about a ‘missing’ boundary plan, which suddenly miraculously appeared in the 2nd Post on the same day as a strongly worded email! Miraculous because there’s been no 2nd Post since 2002, lucky to get one delivery a day!

But, it’s given me more time to do things at my pace & we’ve rented a Storage Unit in Telford so every time we go down we drop something off.

Hope your family are well including the grandchildren!

Hope you’re doing OK & able to reduce the Pred a little.

Take Care

Speak Soon

Angela xx

1 like
Reply

Forgot to say too that I bought a medical alert bracelet. My thought on this was that if I needed to wear one then I wanted to get one I personally liked. I eventually chose one from Etsy website that doesn't particularly look like a medical alert bracelet- in fact some folk have commented on the bracelet not knowing exactly what it was as it is quite neat. On the other side of the gold band that says medical alert- I have my name, the fact that I am on steroids and an emergency number. X

1 like
Reply

That sounds nice Jackie, l’ve been checking them out & found one l like too, l’ll order it when I’ve seen the Endo as he may change my Meds. xx

1 like
Reply

Good ones have a website that you can update with any such changes and add new conditions/remove ones you are done with. And they have international call centres with multiple languages available - not everyone speaks English.

1 like
Reply

I have had Addison’s disease for over 9 years after prolonged use of prednisone steroids. If you try to drop to low your body goes into a crisis. This is your body hasn’t got enough steroid to support it. The body starts to shut down You then need s hydrocortisone injection and sailine drip to replace lost fluid. This can happen if your body is stressed and it can’t make the extra you need. With Addison’s you need to make sure you have enough steroids in your body

1 like
Reply

Thanks so much for this info Crystal, l’ve been so short of energy & unable to accomplish much each day. I hope the Endo can sort me out, l was reading that sometimes they supply a Hydrocortisone Injection Kit incase of emergency’s.

Which replacement Steroid are you taking?

Thanks

Mrs N x

Reply

Yes I have one I use it in emergency’s. Had to use it last Christmas Eve. I had got tummy bug. That’s the usual thing to tip me over the edge. Injected my self then hubby took me to A&E for a larger injection and the drip. Got back home around lunch time Xmas day feeling like I’d been run over with a steam roller. Have a look at the Addison’s web site. They do the injection set all you have to do is get the hydrocortisone. Hope that helps 😘

1 like
Reply

I have hydrocortisone 25mg per day it just about keeps me going. I have double it when I flare with a high temp. Which is weekly.

Reply

Crystal do you take your Hydrocortisone in split doses during the day?

Is there a reason why your temperature flares? xx

Reply

My hydrocortisone I take 10mg at 5am then 2 1/2 at 9am, 12pm. 5pm

Making 25my per day.

I flare because I have Lupus Sjögrens and Fibromyalgia. Mainly it’s the Lupus xx

Reply

Oh Crystal sorry to hear you have all these conditions to contend with, sending you very Best Wishes & Hugs.

Thank You for your help & advice, will post when l get my appointment.

Take Care 💐

Reply

I refused to continue with HC, and now take 7mg Pred. However, as I am currently unwell, I have taken 14mg the past few days, as my Endo said to double the dosage if unwell. I have HC next to my phone, in case I need a paramedic. Sorry, am too chicken to self-inject.

Reply

I thought I was but when I had a really bad crisis I was only to ready to inject. Yes it did hurt but I was desperate. It’s amazing what you can do if pushed. I have asked the paramedic to do it for me. And they shouldn’t but some do xx

Always if I do an injection I go to a& W. As the injection is only a small dose

1 like
Reply

Paramedics in the UK are allowed to diagnose and administer HC in adrenal crises. Technicians who are not paramedic qualified may not be - don't know about that.

Reply

Not worried about hurting. It's the actual DOING of it. My GP wanted me to practise with 1 of the nurses, but I refused. In an emergency, living alone, I wouldn't have the presence of mind to mix the solution and find the right place on my thigh. I was told the paramedics would do it.

Reply

Quite - if you are in a state of collapse you can't. Just have to hope you can call for help. Have you got an alarm button?

Reply

Yep, quite true. Last month, the housing estate, where I live, stopped all our alarm systems, due to lack of Council funding, and we were told to get, and pay for our own. Some have. Some, like me, haven't.

No excuse. I put it off, because I hate living here.Maybe I need a reality check. Living alone, no family UK, NOBODY would know I was in trouble.

Reply

Hi Karools

I used to have Hydrocortisone for my son when he was little & that only need drawing up.

It maybe worth considering seeing the Nurse in the GP Practice & have a go with the oranges but she could also show you how to do it into your own leg or possibly tummy.

I had to self inject during my Chemo the injecting wasn’t the issue, it was the side effects!

Best Wishes

Angela xx

Reply

Brave lady. Shudder when I think of doing it on myself

1 like
Reply

My solution doesn’t have to be mixed just break the top of and draw it out. My practice nurse had me using oranges. It worked when I most needed it

1 like
Reply

Another brave lady. Another shudder.

1 like
Reply

Please could I ask what dose of pred you are taking. I suspect that my mother has the same thing but docs say that at 7mg it’s not worth doing the test as they won’t get correct results. I have Addison’s disease myself so I know what adrenal insufficiency looks like but there’s nothing I can do to help my mother and I feel so helpless. Hope you feel better soon

Reply

Hi Shelly

I was down at 5mg & feeling so awful, after a discussion with my GP I went to 7mg while I went on holiday, l felt a bit better for a few days but remained very tired while we were away. I was already scheduled for the Synacthen Test when l returned. I’m currently on 7.5mg

I’m so sorry to hear about your Mum, it must be so frustrating for you especially as you have the disease yourself, know the signs & could possibly improve her life.

I hope you can convince your Doctor the benefits & the improvement that could be made to your Mums life.

My Very Best Wishes to You & Your Mum

Mrs N 💅🏼

Reply

That isn't entirely true - an experienced endocrinologist can interpret the results even when a patient is still on pred.

It depends to some extent on how much of the pred your mum is absorbing, it varies from person to person between 50% and 90%. If she is nearer the 50% end she is only getting the benefit of half the oral dose and will be deficient at 3 or 4mg-worth.

If you have Addison's yourself you must be under an endo? You could try asking them for advice.

1 like
Reply

Hi Mrs Nails, sorry to hear your diagnosis. Hope you get an endo appt soon. I’m still awaiting the results of my 2nd synacthen test, see the endo beginning of May. Just want answers, fed up waiting! 😕

Reply

Hi Skihexen

I’m sure you must be frustrated at the wait, it’ll be good to know the results of your second test.

What Steroids/Dose are you on now?

Mrs N 💅🏼

Reply

Hi Mrs N,

I was on 5mg pred but have just upped my dose to 7 mg. feeling a little more myself, a little less shattered and fewer aches. I also have fibromyalgia so pain is always present. Endo indicated he would keep me on pred rather than change if results still show adrenal problems. Will find out soon I suppose. X

Reply

Morning

I’m on 7.5mg at the moment but l am leading a fairly restricted life as l run out of energy too quickly & feel so awful. I see my GP on Tuesday so l can discuss the results with her & see if l can get an ASAP Appointment as now we know ld like to start treatment wether it be Hydrocortisone or remain on Prednisolone.

I just don’t want to fall between the Services as we are due to move from Wales to England & it’s a different NHS Service, where you can be seen etc!

Hang in there 💐

Mrs N 💅🏼

Reply

You may also like...