fiddle mum- adrenals???

[Fiddlemum]

hi- diagnosed 12/21. Currently 2mg pred. Struggled through winter 2 lots antibiotics for chest infections. Finally think chest stuff is resolving. Stopped the 10mg maintenance dose of paroxetine (ssri) 6 weeks ago. Started well but now struggling a bit with anxiety and terrible nervous stomach- leading to v loose stools. Also feeling v cold. Got a routine appointment for March 15th with GP to discuss things.

Any thoughts or any kind of reassurance would be gratefully received. I didn’t increase pred when unwell- probably a mistake.

got the whole fight/flight thing on overdrive.

Thank you-

[DorsetLady PMRGCAuk volunteer]

Anxiety and stomach upsets are signs of adrenals stuttering-and yes it probably would be been wise to increased a little when you were ill -but no point in worrying about that now.

However, you might find a small increase-say to 3mg might help you feel slightly better for now. Give it a whirl and see, if nothing else it might give the adrenals a breather.

See this re Adrenals generally -and maybe request a basal cortisol test at surgery before appointment so you can discuss with GP -

healthunlocked.com/pmrgcauk...

[Fiddlemum in reply to DorsetLady]

Think I’ll give that a go and up to 3mg. I thought stuttering adrenals just made you tired not the whole fight/flight response. Yes I should’ve followed sick day rules- too late now - as you say.

Will ask surgery about basal cortisol test.

Thank you so much.

[DorsetLady PMRGCAuk volunteer in reply to Fiddlemum]

Depends how much they struggling -some just get fatigued. But with reducing and fighting a virus yours sounds definitely overstretched.

Hope the 3mg helps, but sure you’ll be back if it doesn’t 😊

[SnazzyD in reply to Fiddlemum]

When your adrenals are not producing enough cortisol your body goes into fight or flight because it detects a potentially life threatening situation. All your systems can’t function from top to bottom. The symptoms I got were weakness, anxiety, aches, sadness, short fuse, abdominal pain, loose stool, dry skin, nausea, low blood sugar, poor circulation. I’m sure there are more. When it was very bad I felt a deep sense of doom like I was staring down a tiger.

[Fiddlemum in reply to SnazzyD]

How did you finally get diagnosed?

[SnazzyD in reply to Fiddlemum]

I had a Synacthen test when I was at 4mg to see if my adrenal glands were capable of working if they were given an artificial substance that mimics the hormonal shout from the brain. The result showed they were doing something but not enough to feel well and certainly not enough to deal with a physical or mental crisis or a prolonged stressor. They said to keep reducing Pred in order to keep that low cortisol state in the hope it works to trigger a better reaction. I was doing 0.5mg over 8-14 weeks from 4mg. Before that it was 0.5ng over 4-8 weeks. By 1.5mg it was much better and I could tell. An easier test to the Synacthen test which requires and hour or two in the hospital, is an early morning Cortisol measurement done by the GP.

So you are tiptoeing the line between keeping low to kickstart the system and going into a dangerous crisis. One thing that can happen with low cortisol is low sodium and high potassium, neither of which you should have. You need some blood tests to check these too.

[PMRpro Ambassador]

I'm a bit concerned that it is still a month to your routine appointment with the GP - those are very typical signs of adrenal insufficiency that could be heading for even more and putting you at risk of an adrenal crisis if you happened to come on any more stress. Like DL, I think a bit more pred would help a lot - but please seek medical advice by dialling 999 if you should feel really unwell. If you can get an earlier appointment with the GP I think it might be helpful so they can see how unwell you are.

[Fiddlemum in reply to PMRpro]

Hmm- maybe I should. Tbh- there’s been a few times I’ve felt quite unwell lying in bed- cold and quite strange. Getting up and moving about/cup of tea helps….always put it down to my hypochondria…

[SnazzyD in reply to Fiddlemum]

If it is low cortisol you could be on the brink of not coping. If it happens again I would try a small snack to bring up the blood sugar. If no good in 15 mins take a few mg Pred and lie very still for a couple of hours. If you are getting postural hypotension that’s not a good sign. You can tell that if you feel faint when you stand up. If that doesn’t work or you are spiralling faster than those things can work then call 999 if you have that feeling of being in deep trouble which is unmistakable. Or 111 before it gets to that stage but bear in mind it can change in minutes.

[PMRpro Ambassador in reply to Fiddlemum]

Snazzy has said it all - next time, no waiting to see if it gets better. Do you live alone?

[Fiddlemum in reply to PMRpro]

No- if just had a long chat with husband. Will get a same day appointment on Monday. Thank you…..

[Fiddlemum in reply to Fiddlemum]

Also going to up to 5mg pred

[SnazzyD in reply to Fiddlemum]

If you feel much better that might be your answer. If so, you need to reduce much more slowly and not over do it.

[Fiddlemum in reply to SnazzyD]

Oh Tgank you all. I took 3mg after our messaging. Think I’ve underplayed how bad I’ve been feeling for quite a while- just thinking I have to get on with the taper- winter viruses have confused things and perhaps stopping the final 10mg paroxetine has been the final straw. The feelings earlier were really frightening. Also realising I’ve been crying at the drop of a hat (or less) for a few weeks. Going to take husband (very logical ) to gp with me on Monday. Will take 5mg tomorrow and Sunday. Thank you so much- I thought I was going crazy earlier .xx

[Hidden in reply to Fiddlemum]

4 to 6 weeks would be about the time it would take for the beneficial effects of Parox to wear off, so this may or may not have some bearing on how you are feeling.

[SnazzyD in reply to Fiddlemum]

The trouble is, it can be a slow creep.

[PMRpro Ambassador in reply to Fiddlemum]

There are many doctors who discourage tapering during the winter, if you have been unwell with a bug or if changing other medication. My rule is NEVER change 2 things at once - you won't have a clue which caused what ...

[Fiddlemum in reply to PMRpro]

And that is exactly what I’ve done- and now I don’t know what’s what- so there is a lesson for anyone else who’s considering it…..DONT- I wish I hadn’t - too late now- just hope the medics can sort me- cos I certainly can’t!

[PMRpro Ambassador in reply to Fiddlemum]

Someone will!! I'd start with the pred ...

[Karendeena in reply to Fiddlemum]

This is how I wake in the morning. I describe it as extreme nervous anxiety and fluttery stomach. Like you it goes when I get up

[SheffieldJane]

I am experiencing post chest infection and antibiotics exhaustion and am contemplating another round of sick day rules. My Rheumatologist says that this could last weeks or even months. I feel nervous too - I call it the “willies”. Going to see my Endocrinologist when I get to 4 mgs. Meantime lots of bloods have been taken and going to have my proximal ascending aorta measured to see if the leak is worse. This disease is relentless.

[herdysheep in reply to SheffieldJane]

Hugs Jane. You have had one thing or another for quite a while. It is so wearing. Hope there is a chink of light in a shorter tunnel soon

[SheffieldJane in reply to herdysheep]

…. and it’s not an on-coming train 🫤

Thanks herdysheep. X

[DorsetLady PMRGCAuk volunteer in reply to SheffieldJane]

Sorry to hear this -.do many things going on… 🌸

[Fiddlemum in reply to SheffieldJane]

Thank you for sharing that- and sending you lots of empathetic hugs. It certainly is relentless and very confusing. I perhaps should ask about an endocrinologist- I’m hoping the 5mg gets me over the weekend. Lots of good wishes to you.

[Rubha]

did you stop your SSRI without a long slow taper ? These drugs need to be weaned off very slowly. Sorry you are feeling the horrible f and f symptoms. Not what you need on top of everything else. Good luck .

[Karendeena]

I am suffering the same fate. Just come off prednisolone (after a very slow taper) and struggling with anxiety, fight/flight and extreme nervous stomach with v loose pale stools. Food just seems to be shooting through me at an incredible rate 😔

[Fiddlemum in reply to Karendeena]

Oh goodness- shooting through is also an issue for me 🤭 . Hope it all settles down soon 💐💐💐💐

[Karendeena in reply to Fiddlemum]

Yes, it's awful isn't it. Everything I eat seems to be through me quickly which makes me more paranoid and therefore worsens the symptoms. I struggle to sleep too. Stress and health anxiety have installed itself in me.

[Fiddlemum in reply to Karendeena]

any helpful tips or are you hoping it resolves itself?

[Karendeena in reply to Fiddlemum]

I am trying different foods but I really don't think it's that. I do the deep breathing in the hope that it settles but again I struggle until I get up, I certainly can't sleep once this 'feeling' has woken me. It gets so bad I then convinced myself I have some dreadful disease. My body seems to be in constant fight/flight 🥺😞

I keep hoping it will pass x

[Fiddlemum in reply to Karendeena]

You have described me very well 🤭. I have confused the issue by coming ff a long term anti depressant- rather silly of me at this time of year and with everything else. I’ll see what GP says but may well accept some meds for my mood as well as what he thinks re steroid dose. If I can muster it - I may well ask to see an endocrinologist.

Take care- you are sooooo not alone.

😘😘💐💐

[tealtime]

if you did not taper the Paroxatine you may be having some withdrawal symptoms