PMRGCAuk
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Short Synacthen Test Today

Hi

I went for my test this morning, had three lots of blood taken, one as a baseline then after half an hour & an hour after the Synacthen which stings a bit. After about 20 minutes l felt very hot & had a lovely pink face but it was quite unremarkable really, l was a bit concerned before l had it but it went much better than I thought!

Had a good nap after my lunch & felt much better.

Now just await the results.......

Hope Everyone is OK?

Mrs N xx

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I took a book and then fell asleep after the cannula was put in. They took the book away from me, propped my feet up and at the end of the test woke me up with a cup of tea.

Best sleep I had in ages :)

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That was good, my eyes kept closing & think l could have napped but husband kept me awake!

How were your results? x

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Adrenals up and running, which I had not expected after 5 years of getting older and the amount of pred taken over those five years for GCA.

I do know people whose adrenals have not woken up, but sometimes it can take up to a year for them to get up to speed. That is why you have to carry your Blue Steroid Warning Card for at least one year after stopping pred.

I have not come across anyone who has had to go private to date.

You should not be having to go privately..........your medics need a stern talking to and need to wake up to the reality of long term pred................. and perhaps refresh themselves on the Trio (hippo, clock and ads). .

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Hi

The only reason I’m thinking of going privately is because he’s so good, l know because he looked after my Mum.

I’m a Border Person l just live over the border in Wales & we have issues about where we’re seen due to NHS England & NHS Wales Rules

I’ll see what my Rheumatologist says she may know another good man/woman!

I’m a big advocate of the NHS having recently experienced it at its best following my breast cancer treatment.

Take Care

Mrs N 💅🏼

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Good luck with the results. It never occurred to me that it would be more than a blood test. Thanks for the warning.

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I had a random Cortisol Level done a few weeks ago & it was low so they decided to do the Short Synacthen Test. Will let you know results when I get them x

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What is considered "low" on the random cortisol test? I was due to have an early morning one on March 14th. Due to an admin fail it did not happen until 1.30pm. The score was 3.91 or its equivalent of 108 in whichever scale.

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Hi Mrs Nagswoman

I’m sorry on this occasion l can’t help with the numbers, l was out for lunch when the hospital rang to say my test results were ‘low’ therefore l needed the Short Synacthen Test so l couldn’t go into detail in a crowed restaurant.

I will however get all the ‘numbers’ when I speak to them re the results.

Best Wishes

Mrs N 💅🏼

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Me neither!

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Me too. I am glad I know now

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Hi Edith

Hope you are doing well & the winter weather hadn’t been too bad for you.

Best Wishes

Mrs N 💅🏼

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Hi Mrs Nails

I am fine thank you. Just tapering to 12.5 having got down to 3 twice in nearly four years. I am very lucky as I have never been in pain other than the GCA headache before I was diagnosed or particularly tired. I do the Floating Fairy as my daughter describes it which helps. Still overweight, covered in bruises( still have my “cruise bruises”), hate my skin and baggy eyes however still here at 77 and bought myself a new Mercedes with blacked out windows and a super woofer stereo . Like you, I have the nails but mine are Tomato 🍅

Have a good day

Edith 🥂🥂

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Morning Edith

Loving the sound of the car, they asked us if we wanted tinted windows on our current Merc but l though it’d make Terry look more like a Drug Dealer 😂 this arose from the fact the pharmacist wouldn’t sell him a box of 28 Phenegan only a packet of 7 Travel Sickness Pills 😂 l wouldn’t care but he returned an out of date box of 28 Phenegan with only two taken! I had to get on the phone & deal with it!

Sorry to hear about the ‘Cruise Bruises’ what have you been up to?

I’m super lucky with my skin on my face but then I indulge in ELEMIS 💁🏻‍♀️ but my poor body is fighting a battle with Bowen’s Disease now so l’m on the Chemo Cream now, all good fun.

We’re going to see our new house again today, so excited, we’ll be living near our son, daughter in law & new grand baby to be, due 3rd July ~ very excited!

Take Care

Speak Soon

Angela xx

PS What colour is the new car?

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I will look like a drug dealer as well, my daughter is a serious Reggae fan so when she drives it the image will be complete.

Pharmacists make strange decisions, I have never heard of a phenergan addict but I am now told they can only sell you 7

Your new plans are super, really good to be near family and you can never be depressed around small children.

The cruise bruises are caused by bumping into things. It’s really annoying but I cover them up and if I can’t see them it’s not too bad.

Just asked himself about Bowen’s and he says it’s not a problem.

Did you have the test in hospital by the way?

The car is Dynamic silver, should be black of course!

Have a good day

Ex🥂🥂

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Hi

I think if it’d have been black the drug deal look is complete, l like the sound of Dynamic Silver! Ours is Brilliant Blue!

Yes l was admitted to the Medical Day Unit & a really nice team they were too! Everyone else was getting an IV of some type. They also have an IV Suite where l go for my Zolendronic Acid every six months. Funny story, Terry took a message of the ands machine for me & told me to ring Ivy Sweet - Welsh accent for IV Suite 😂

The Nurses in the Suite loved it when l told them 😂

Have a Good Day

Speak Soon

Angela xx

Apparently the druggies crush Phenegran, mix it & inject it, my Pharmacist told me! 🤫

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I remember phenergan from very many years ago. Did I take it for hayfever?

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Hi Again

Yes, very likely, hay fever, allergies, motion sickness etc

Worked for me in a Gale Force 10 🤢🌊🌊🌊🤢

Best Wishes

Mrs N 💅🏼

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Just been reading up on phenergan as I'd never heard of it before and article said it shouldn't usually be taken more than 10 days in a row. Maybe that's why they restrict the number of tablets? Comes with a pred-worthy list of side effects, too. 😱

nps.org.au/medical-info/med...

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Hi Heron

We always carry it when we go on a Cruise (more of an Insurance Policy really) think l’ve only ever taken two ~ the two out of the packet of 30 ~ in five years.

It was just an anecdote for Edith re driving a Merc with tinted windows. 😂

Thanks ~ it’s definitely not something for long term use. I will read the article though, luckily for me I don’t get sea sick as a rule but you never know when a hurricane may hit.

Hope you’re keeping as well as possible.

Mrs N 💅🏼

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Are you still on Pred?

Have you noticed that the painted nail emoticon has gone? I always associated it with you. How are you - wiped out I expect.

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Yes, still on Pred 7mg & Methotrexate 20mg weekly, some parts of the day are good but l can get wiped out so quickly, hence the test today.

Hope you’re doing OK?

💅🏼 is still there but think they’ve moved it!

Take Care 💐

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I am also on 7 mgs and plagued with tiredness. I feel dreadful when I wake up, not so much pain as just a dreadful malaise, with stiffness now joining in and some intermittent nausea. Have you found that Methotrexate helps at all?

Like you I have windows in the day when I can get things done.

What was said to you about the fact that you were taking Pred which might alter the test results?

PS. Do you crave quick energy giving foods like sugar and carbs? I do suddenly, like a demon.

Sorry about all the questions but my Rheumatologist is ill and my GPs are inconsistent in their ability to help.

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Hi Jane

Like you not l’m not in pain like it was, in fact nothing like it was, l just dread having to rush, everything has to be done at my pace otherwise l start to get hot & bothered, also l don’t function properly, l forget to take my brolly or my phone etc

But if l go ‘Precious Princess Pace’ l’m fine

I asked about reducing/stopping the Methotrexate but Rheumatologist believes it’s helping so lm sticking with it for now.

I checked with Patient.Com & read another couple of articles from trusted sources & it is only 24hours before & it was in the booklet they gave me also, so was OK l’d taken it by 11am after the last blood test.

Keep in touch & l’ll let you know how l get on.

Mrs 💅🏼

PS Yes l do get cravings when l feel exhausted & it’s always for Chocolate 🍫 & I’m not much of a Chocolate Person generally

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Hello Mrs Nails. Hope your results are good. Last May had the test done and I have Addison's disease. I was on 4mg Pred, having had a bad experience with Hydrocortisone. Don't be put off. I am now on 7mg Pred. I must stress that I had NO FATIGUE before the test, and still NONE now.

Like SJ, I also wondered where the nails were, but you have a lovely photo.ps I am doing well .

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Hi Karools16

Sorry to hear you have Addison’s, l definitely have the fatigue & then some, so will wait on the results & go from there.

I think that’s why l haven’t been on the Group, just not had the energy or inclination. Plus l seem to be collecting more medical conditions as l go along.

Hope you are keeping well & the winter hasn’t been too hard on you?

Take Care

Mrs N 💅🏼

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I can’t find them amongst all mine. I seem to have a lot more monsters and heads doing dramatic things though.

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Hi Jane

They are in Smilys & People on bottom row

🙅🏻‍♀️🙋🏻‍♂️🙎🏻‍♀️💇🏻‍♂️💅🏼👯‍♂️🏃🏻‍♂️

Mrs N 💅🏼

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🧛🏼‍♂️💅💅💅💅💅💅💅 hmmm! Back.

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😂💕😂

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Hi Mrs Nails. I had a short Synacthen test done beginning of last December, after over 9 years of PMR and Prednisolone. By then I was barely functioning. I have adrenal insufficiency (comes under the umbrella of Addison's Disease) and I was advised to increase from my long term 3.5 mg to 5 mg. Wholly inadequate. Went to 7.5 then 8.5 and still barely functioning. Got the stage of feeling faint a lot. In desperation I am seeing an Endocrinologist next week, paying for it myself. I hope your result is good news?

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Hi

This sounds very much like my story & I’ve been on Pred for 7years. I was on 5mg up until a month ago when l explained fully my symptoms to my GP & she put me up to 7mg as we were going on holiday but it didn’t really help.

I saw her late yesterday afternoon, explained how l felt while l was away, l said l wanted to include a 2.5mg coated in my dose to try & help how l feel in an afternoon, thus spreading the dose out a bit even though it’s all taken at the same time. I don’t know if it’ll help but at least l feel like l’m trying something, she said to go to 7.5mg & see her next month.

I also want to see an Endocrinologist, we’re prepared to go privately & l know an excellent one from when l was working & as far as l know he hasn’t retired, so fingers crossed l can see him🤞

Please let me know how you get on next week.

Speak Soon & Take Care

Mrs N 💅🏼

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I've been told by a few doctors that loss of adrenal function after being on pred is as rare as hen's teeth. Until I told one of the top guys that I alone knew of at least half a dozen on the forums - out of maybe a thousand or two patients on pred. That did make him sit up and take notice. At the time at least.

Another crusade on the list...

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I saw this:

Recovery of Adrenal Function after Long-Term Glucocorticoid Therapy for Giant Cell Arteritis: A Cohort Study

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

"Results: At the first ACTH test, 74 (49%) patients were non-responders: of these, the mean time until recovery of adrenal function was 14 months (max: 51 months). A normal test response occurred within 36 months in 85% of patients. However, adrenal function never recovered in 5% of patients.

GC of >15 mg/day at 6 months, GC of >9.5 mg/day at 12 months, treatment duration of >19 months, a cumulative

GC dose of >8.5 g, and a basal cortisol concentration of <386 nmol/L were all statistically associated with a negative response in the first ACTH test (p <0.05)."

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Often I think rheumatologists are oblivious of the time it can take from 8mg down - and try to rush the patients off. 5% seems at least resonable to me - and that is a notable figure I'd have said. Wouldn't you?

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Interesting, thank you x

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I’m happy to see that 85% fully recovered......and it’s reassuring to see that it can take 36 months.....so there is still hope for me. I’m pretty discouraged that I seem to be going into PMR remission but my quality of life is very poor due to adrenal issues......extremely fatigued too much of the time.

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It does seem reassuring.

I am so tired of being tired, though as others said, there are blocks of time that seem okay. I also have body temperature issues with frequent swings from hot to cold. My doc says that may also be an issue with the hypothalmus>pituitary>adrenal axis.

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I get very hot & l always think of it as my body searching for Cortisol as it’s when lm very fatigued.

I too feel the PMR is in remission but the fatigue is now the issue. I can’t cope with more than one thing at once & I used to be a Mulitasker Extraordinaire! Now one thing at a time, l feel my life is passing me by but hopefully l’ll have some answers soon!

Best Wishes

Mrs N 💅🏼

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Here is an interesting article I found yesterday from the National Adrenal Disease Foundation...and it specifically mentions PMR and the issues with tapering.

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

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Hi Mrs-CJ

Thank you for this article, it’s very interesting & very helpful.

I’m looking forward to finding out my results as l think l’ve been suffering from this for just over 12months.

Hope all is well with you.

Thank You Again

Mrs N 💅🏼

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Is there a particular point at which one should have an adrenal test done? I'm on 7 1/2 pred.

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Hi tgca

No l don’t believe so & it’s not necessary for everyone, l had mine due to becoming very unwell despite increasing my steroids back in September & my Consultant felt it was necessary to check.

I believe my PMR is either stable or in remission but l can’t get lower than 5mg & have many other symptoms listed in previous posts.

Best Wishes

Mrs N 💅🏼

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Thanks Mrs N

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I don't think there is a lot of point before 5mg - unless you start to suffer symptoms of adrenal insufficiency. It's the old 50%/90% story - if you absorb 90% of your pred you will be able to get to a lower dose before having problems (if you are going to do so) than if you only absorb half of your 8mg dose.

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I've done some web searching for studies on the bioavailabilty of prednisone and haven't found anything very current. What I would really like to know is whether there's a method to test for the level of absorption in an individual patient. Are you aware of anything in this regard?

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There must be one to have established the bioavailability in the first place when they were developing the drug. But I doubt it is generally available. It will probably be as "simple" as giving a known dose and then taking blood levels over a period of hours, plotting the graph and working out the area under the line (or something of that sort!). Difficult sums ;-)

Won't be any exciting current work - it won't have changed a lot since 1947...

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Thanks PMRPro. I'll be on a mission to get a referral to an endocrinologist when I'm back in Canada for the summer.😎

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Gosh, I am sorry you are having such a tough time. It seems I was fortunate.I didn't have any sickness, fatigue, before or since. I had a time when feeling rough, I remember PMRpro saying it could be due to my adrenals i.e. feeling weepy, etc. It was a short period, then gone. I do hope you have an understanding Endo , and that better times come soon. x

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I have been on Pred for only 2 years but prior to that I had a lot of bother initially with Graves Disease , Thyrotoxicosis ( GD 30 years). I imagine that put a strain on my Adrenals. I feel like I’ve struggled up a mountain only to find a higher one behind it.

Does anyone have any success stories about their Adrenal Function?

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I do know quite a few people who have got off pred and had no trouble at all. Celtic and jinasc on here had GCA and were on pred maybe 5 years. More people recover than don't.

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Thank you PMRPro. Darkest before dawn I guess.

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Good to hear your progress and your recent experience. Let us know how you get on. X Jackie

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Will do xx

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Thanks Jackie x

Off to see our new house today, just waiting on a move date now 🏠 🏡

Hope everyone’s well with you

Speak Soon

Angela xx

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Just read my reply, sorry I meant to say that I was told Bowen’s wasn’t as awful as some other skin things, it needs careful management and I am sure it’s yet another hateful thing to have to worry about.

I hope I didn’t upset you, none of this is trivial

X

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Gosh No Edith, you didn’t upset me, Bowen’s is infinitely preferable to the alternative, which was always possible, a secondary from the breast cancer. Had a biopsy on the one on my leg & it’s healed beautifully, the one on my arm is a bit slow to heal but it’ll get there. All in Life’s Rich Tapestry, eh?

Speak Soon

Angela xx

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Thank goodness, worrying about it as I know how mad I am and how sensitive this illness makes me.

My jeweller friend in Birmingham has melanoma and now has brain secondaries, he is early 50 s and a lovely family.

My daughter had both thyroid and breast cancer, the latter 10 years ago and is fine. The NHS is superb at the big things it’s the rest that can be a bit random. I live in Chepstow and see a private Rheumatologist in Cardiff, he charges £150 but I get him for a good half an hour and I can always ring him via his Secretary. I suspect the treatment is the same but I appreciate the time.

Edith x

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Hi Mrs Nails,

Your post has struck a chord with me. I’ve been struggling to get off my pred, 5mg currently. I’ve been on pred for 4 1/2 years. My Rheumy thinks my PMR is in remission and sent me for a synacthen test last summer, the results indicated adrenal suppression. Getting an appointment with the endocrinologist has been the difficult bit. The delay has pushed into going private, I now have second synacthen test booked for later this week to check where things stand currently.

I am feeling constantly wiped out !

Do keep us posted on how you get on. X

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Hi Skihexen

It seems that there are quite a few of us with this issue, l actually think this has been going on for over 12months for me, l believe my PMR is probably in remission but the issue now is with the steroids & secondary adrenal insufficiency.

Mrs CJ has posted an interesting article in this thread which l think you’ll find interesting.

Please let us know how you get on with your next Synacthen Test & when’s your Appointment?

I’m going to start another thread tomorrow re ?secondary Adrenal Insufficiency.

Speak Soon

Best Wishes

Mrs N 💅🏼

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

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Hello MrsNails

Let us know when you get the results of synacthen test. What did it feel like.with the extra cortisol in your body. Any sensation. I’m going on April 6 at 8:30 AM. What time was your test done. I will be fasting. No steroids in the AM. Anything I should know. Thank you

Happy Easter.

Marilyn

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Hi Marilyn

My appointment was for 9am, they were all ready for me when l arrived, a reclining chair, pillows & all my paperwork, which is always reassuring.

I didn’t take my steroids on the morning but l was allowed breakfast & my other Meds (different hospitals have different protocols) they may want a fasting level from you.

They put a cannula in my arm, took a baseline blood, then gave me the Synacthen into the muscle in my arm, waited 30mins to take first sample of blood, then 30mins later a second sample & that was it.

After about 20minutes after the injection of Synacthen l started to become very hot, l’d already been drinking water but they gave me a jug of iced water then, a short time later my face felt very hot & l was a little bit flushed.

I wore a light dress & took a pashmina, the ward was very hot so l’d recommend a lightweight main outfit with a wrap or cardigan.

I took my steroids with me & had them straight after the test had finished. I’d take a breakfast bar or muesli bar to have when it’s finished as you’re fasting, they’ll probably give you something to eat & drink but best to be on the safe side.

I was most definitely apprehensive about the test but it was better than l feared.

Good Luck with your test, l’ll let you know my results once l get them & you can let us know how you get on also.

Take Care

Angela x

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Thank you. That was a lot of good information. Anxious to hear your results. Seems some folks are lucky even after many years their adrenals come back. I’m thinking positive for us. Marilyn

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