ADVICE REQUEST POST SYNACTHEN TEST

[PMRGCA19]

I had a blood test on 24 March which showed my cortisol level was low. Not surprising really since I had finished a 7-week taper from 5.5 pred down to 5 mg and was suffering the usual symptoms of adrenal insufficiency inc awful fatigue and pains. GP then referred me to Endocrinologist.

I rang Rheumatology Nurse specialist for advice and she said she could organise a Synacthen test. This test was done on 4 May and yesterday a Dr from Rheumatology rang re results. These were 450 before Synacthen injection and 306 half an hour afterwards. Dr said this was ‘suboptimal’ and advised me not to taper until after I had seen the Endo. I’m from Northern Ireland and we have the longest waiting lists in the UK! I have read on this forum that some Rheumatologists keep people on 5 mg for up to 9 months.

The Rheumatologist could give me no indication as to whether the Synacthen test showed if my Adrenal Glands were capable/incapable of working – this I would love to know as I thought that was the purpose of the Synacthen Test. She did say that my next Rheumatology appointment would be face to face as they wanted to see my joints as I also have SeroNegative Inflammatory Arthritis.

Thankfully my symptoms have improved a bit; particularly the light headedness seems to have gone. What should I do now?

[DogAgilityObsessed]

I’m interested in this. Plus replying should push your question up the list again. I have a little while to go before I’m at that stage (I’m on 9mg) but do people usually get a Synacthen test or only if they get withdrawal symptoms?

[headgirl in reply to DogAgilityObsessed]

Hi, I too am interested in this subject. I am currently on 8mg and have been on Pred for just over 9 years. In recent weeks, I have been feeling extremely faint and light headed and overwhelmed with exhaustion. I have had 2 blood tests to check my Cortisol level and both have returned a very low level, the last one being 50. Saw consultant at the end of last week and have now been prescribed Fludrocortisol and am taking 50 mcg once a day.

I would really like to know what experience others have had with this drug and about how long it will be before it takes effect. Feeling rather low and frustrated at present.

Many thanks.

[PMRpro Ambassador in reply to headgirl]

Which consultant did you see? An endocrinologist?Fludrocortisone is usually used together with hydrocortisone - I imagine though that the doctor is assuming the pred is fulfilling that role. I don't really know - but I think it is a question of waiting for adrenal function to return. The fludrocortisone is to keep other things affected by the adrenals in balance.

[PMRGCA19 in reply to headgirl]

Thanks headgirl. Unfortunately my GP didn't give me a number when she said my cortisol level was low.

[PMRGCA19 in reply to DogAgilityObsessed]

Thanks for your reply DogAgilityObsessed. I think most people don't get a Synacthen test until they are at 5 mg Pred or lower.

[Theziggy]

The aim of a synacthen test is to measure

how well your adrenal glands are working

using a synthetic medication called

tetracosactide (synacthen). This

medication should stimulate the

production of a steroid hormone called

cortisol from your adrenal glands

[PMRGCA19 in reply to Theziggy]

That's helpful Theziggy, thanks.

[PMRpro Ambassador]

Are those figures the right way round? The second, after the injection should be higher than the first which is the basal cortisol level. and then the adrenal glands should produce a spike of cortisol in response to the injection.

[PMRGCA19 in reply to PMRpro]

I'm afraid that I assumed the figures were given in chronological order but perhaps I assumed wrongly. Sorry.

[SnazzyD]

Hello, I had two tests, one at 4mg and one at 1mg/0.75mg ( to long at 0.75mg). I can’t find the result of the first but it really wasn’t special, I have a figure in my head of about 400 and something after the hormone. The second was a cortisol level of 360 and then it went up to about 700+mg. My endo was firmly of the opinion that 5mg Pred was still a bit too high for the adrenal glands to have properly got the message that they needed to wake up, hence getting it at 4mg. So, even with the so so result they still wanted me to reduce Pred at 1mg per month to trigger more action but being really vigilant about symptoms of poor function and instructions about adrenal crisis, should it occur. This was even though I felt pretty ropey with fatigue, weakness, nausea, emotional fluctuations etc. They were a bit dismissive of my 0.5mg every 6-8 weeks idea but I stood firm saying that it still made me feel rotten at this level so I wasn’t about to speed up. Then they wheeled in a more senior chap and I said politely words to the effect, “listen son, I have to get through my rather demanding domestic life that you don’t, so I’m not about to make that more difficult just because you want me down to zero in 4 months for no good reason.”

From that I’d say don’t worry that your function wasn’t sparkling at 5mg and really, reducing is the only way to get the whole system woken up because it responds to not enough Pred. However, your GP is being cautious in the right way and yes, I can see your problem with waiting lists and that you could be on 5mg for a long time. Option 1 - Accept the 5mg because as you say it is one approach by Rheumy’s and besides you have other things going on rheumatologically. Option 2 - Ask if your GP could use that great invention, the telephone, to see if in view of long waiting lists that you can do 0.5mg on a long taper to further trigger function. This is because you feel well and are not struggling and will promise to seek help if things are deteriorating. Option 3 - See if your GP will back you without that.

[PMRGCA19 in reply to SnazzyD]

Thanks Snazzy. I'm very tempted to start reducing slowly at 0.5 mg over 7 weeks as it's now almost 3 months since I reached that 5 mg milestone. At the moment I feel well if I don't do anything (cleaning or walking) but if I do anything I will pay for it by being not able to anything at all the next day or so. So maybe I'll combine options 2 and 3.

[SnazzyD in reply to PMRGCA19]

That sounds about how I was; my life was pared back to the bare minimum for 6 months+ until my adrenals started to sputter into life.

[jinasc]

Me, I would stick to 5mg. The Rheumatology Consultant knows what he is doing in this case. You are at 5mg so don't rock the boat and remember the Tortoise Won the Race.

PS: I live in England have had 4 appointments cancelled with my Cardio over the last 15 months. When the 4th cancellation came in the Cardo guy took time to call me and said 'if anything changes' go to A&E and tell them I told you to do this. Fingers crossed nothing has changed...................

[PMRGCA19 in reply to jinasc]

Thanks for your advice. But I'm very sorry you have had such disappointment with cancellations. However I'm glad that you have a compassionate and practical Cardo. Hope never have to go to A & E.

[Boss302Fan]

Interesting. From what I’ve read here and other places they usually wait until the prednisone dose is less than or equal to 3 mg/d. Some don’t bother at all if no symptoms are felt indicating insufficient cortisol levels and also read the slower a taper from 5mg/d, (magnitude of incremental decrease in prednisone and weeks to do so, I’m using 10% reductions) the higher probability of a smooth transition / reactivation of the adrenals response. Also, my understanding (so could be wrong) is the Synacthen test doesn’t guarantee they’ll return to normal operation but they have the potential too?

So, now I’m totally confused why they even did the test at this time or even recommended an Endo at this time as well. I’d be asking those questions. I’m transitioning to 3.5mg currently still feel fine, if I start feeling weird (how’s that for a descriptive term😂) then I’ll ask my Rheumy if should get the test and/or get an Endo on board. I’m not worrying about it, I know I can always bump my pred dose a little here and there temporarily to compensate until the appropriate tests can be scheduled.

I don’t have references for the above it’s from reading bits here and there and I stopped saving the documents awhile ago.

[PMRpro Ambassador in reply to Boss302Fan]

One lady on the forum felt fine - until her rheumy did his normal practice of a synacthen test, she was at 2mg. And had no reserve function at all even if it had wanted to! You can't tell - a few tests too many is better than one too few I always think.

[Boss302Fan in reply to PMRpro]

That makes perfect sense, but at 5mg?

[PMRpro Ambassador in reply to Boss302Fan]

Borderline - and you could still have an adrenal crisis if ill or whatever ...

[PMRGCA19 in reply to Boss302Fan]

Thanks Boss302Fan. That is a very informative reply. Yes, my symptoms included lightheadedness as well as nausea, sore pelvic girdle, lower back, thighs, calves, poor memory and concentration and my sleep pattern disappeared. Over time and with increased use of paracetamol these have eased. You have done really well to get to 3.5!

[Zareda]

I am at 2.5mg now with lots of adrenal symptoms. When I asked rheumy about this his answer was you are fine because your blood pressure is stable 🤦🏻‍♀️ I guess in his book you can’t be suffering from adrenal fatigue if your BP is stable. I dread the next taper because it gets worse each time. Good luck getting things straightened out.

[PMRpro Ambassador in reply to Zareda]

Well it might be stable - until it suddenly isn't ...

[Zareda in reply to PMRpro]

My feelings exactly!

[PMRGCA19 in reply to Zareda]

Zareda, It’s ages since the last time my BP was measured and no one has asked for it since then. You have done really well with your reductions so maybe I should take a leaf out of your book!

[Zareda in reply to PMRGCA19]

Well I’m pretty much doing it on my own and with the help from everyone on this site. My Rheumy is pretty much useless other than renewing the prednisone.

[PMRpro Ambassador in reply to PMRGCA19]

Here it is assumed that most people will either get the pharmacist to check their BP or will buy a BP cuff of their own - they aren't expensive at all.

[PMRGCA19 in reply to Zareda]

It's ages since my BP was last measured Zareda and no one has asked for it since. You have done really well with your reductions so maybe I should take a leaf out of your book!