Hi I will try and explain in as few words as I can !Last July I lowered to 5mg started (20mg July 2021) began to feel unwell, really bad headaches, spaced out, fatigue.
Back and forth to doc, no couldn't be adrenals not been on steroids long enough! Said tension headaches wanted me on amitryptaline, I declined.
Think I wrote about this last year.
So I'm still with permanent headaches nausea and lack of enthusiasm and low energy. I had brain scan, all ok. Eyes checked all ok. Saw rheumi end jan agreed to do synacthen test , Feb 6th. Finally got results in post this morning. Saying adrenals not working as they should which explains why I have been feeling unwell....said referred me to endo in meantime increase by 1 or 2mg to see if I feel better.....
This morning before I had receive letters i had a call from endo he said my function was ok I was working a bit my self didn't know why I had headaches and to start lowering by 0.5 every month. He said he was asked to advised me how to get off steroids and he would test again when I'm at 3mg. This is how he sees I am manage my adrenal insufficiency which the rheumi letter to endo said I had.
My base line cortisol was 155 pre syn test then 307 after .
The endo never mention adrenal insufficiency at all.
I'm so confused and my head hurts 🙈
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Lovetobe
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"no couldn't be adrenals not been on steroids long enough!"
As I understand it you'd been on pred for a year? What utter tripe.
However, the result shows they are there and working even if not perfect yet which isn't surprising at 5mg pred and the only way to make them improve is to stick through the effects of low cortisol which is the only thing that will persuade them to work normally again.
You probably WILL feel better on a couple of mg more pred - BUT that will only set you back on your aim to regain better adrenal function.
SnazzyD has written lots about her journey through adrenal insufficiency and low cortisol.
Funny you should mention spring tiredness. As a child I suffered from fatigue during the spring. My Mum put it down to laziness! Back then they put it down to growing pains......
Not sure where the doctor gets the idea from that you’ve not been on Pred long enough to have adrenal insufficiency. It’s commonly stated at it’s more than about 3 weeks.
Sadly, there isn’t much anyone can do to help you through poor adrenal function whilst you are on doses around 5mg or even 3mg. Your test is likely to show low function as you are still on enough Pred to confuse the system. For some, like me, it is a slow journey of feeling rubbish until they wake up. The only way to wake them up is by slowly depriving the body of Pred. No they are not working as they should be but they won’t be which is probably why the Endo didn’t say much. Upping your Pred briefly to see if your symptoms go away could be handy to see if it is related but eventually you will have go through this. The good news is that your adrenals are doing something so one can risk being hopeful that they will get better as you reduce but reduce you must so see improvement.
As for your headaches, have you made a diary to look for patterns of timing in the day , activity, food, sleep, etc? Often we have to be our own detective.
Hi SnazzyD thanks so much for you prompt reply. What you say all makes sense. Last August September time I did go back up 1mg to 6mg for 6 weeks I still felt the same so lowered again in 0.5mg tapers to 5mg again
My headaches have never stopped tbh, sometimes worse, over talking stresses me and I think sugar makes it worse.
But pain killer just done touch it I wake in the night same pain wake up same pain 🤷♀️
Head scan clear. That's why I thought it adrenals, along with bouts of nausea, omg really irritable and low mood, and heat flushes.
Were your symptoms similar, I don't think I can stand another 6 months like this!
I did read on here somewhere of someone taking vit by for headaches, I might try it.
Nothing to loose I guess.
Also I will try to keep a diary, im pretty crap at that though, start for a few days then dwindle off and just moan about my head instead 😅
Have you got all the basics in place like sleep, enough fluids, diet, vitamin D? My low adrenal symptoms were as you described but I didn’t have a persistent nasty headache unless my neck or shoulders were playing up. Tension headaches in other words and it was easy to find the culprits by pressing various areas or getting someone who knew where to poke to do it.
I fall asleep easily but wake loads toss and turn what feels like all night, but apparently I snore so must get some sleep, I wake feeling like I have a hangover have done for years tbh blamed that on my fibro, who knows.I drink water, im trying to exercise I need that mentally, my diet is good in my main 3 main meals but I sneak in the choc cakes etc when I'm fed up, hence my weight gain really can't blame the steroids for that !
I'm at a loss tbh, my doc sent me for the head scan to shut me up I think! I'm just so not wanting to go down the amitryptaline route without knowing the real reason 😕
Sleep apnoea? Just a thought as you report feeling hungover etc, snore and gaining weight and no obvious cause for your symptoms. Of course it needs a doctor’s input. However, Fibro can cause all these also.
You might still be disturbing yourself. Occasionally when my husband’s weight creeps over a certain level, and not by much either, he starts to snore. As I lie there plotting his demise I notice that he seems to repeatedly pull himself out of restful sleep with obvious results the next day. My father-in-law was the same, a snory night = feeling hungover that next day.
Have you had your blood sugar (HbA1c) checked? The sugary food might be keeping your blood sugar up which can all sorts of ill effects. I know it is easy for me to say as these things are complicated but I think you owe it to yourself to at least reduce the sugary bingeing. It can cause all sorts of issues. Do you know what triggers it?
Have you been tested for sleep apnea? You mentioned snoring. That might be a clue. Sleep apnea will lower your brain and heart oxygen because - apnea is stopped breathing and no oxygen coming in. Not good to say the least.
Testing involves wearing an oximeter on your finger and something on the forehead - mine was done at home. I don’t have it.
I was given amitriptyline because I was having migraine headaches. The headaches were waking me up at night. The amitriptyline stopped that. It truly was a blessing, because with more sleep, I felt better in many ways. Amitriptyline is prescribed for many different things. Now my headaches are gone, but my gastro Dr. has me taking it for IBS. And it works. So personally, I think it's pretty good stuff!! I have NO side effects from it. Also, I hate to say it, but if you are having migraines, that chocolate you're eating to make yourself feel better, could be causing your headaches. There is a whole list of foods that cause migraines. I have felt your pain, and I truly hope you get some good answers!
Hi... I have sai from long term prednisolone. I split my preds 6am and 2pm. I also drink electrolytes which is important for adrenals too. Your electrolytes could be out of wack causing the headaches? 🤷🏼♀️
Do you have a kind doctor who keeps an eye on your levels? Low adrenal function on low Pred doses can push your sodium down and your potassium up. I would have loved that to take the guesswork away.
Unfortunately not. I have to monitor myself. Luckily I know my own body. I drink electrolytes everyday especially as I sweat a lot with the slightest exertion. I notice the difference if I don't drink them.
My maintenance dose is 10mg due to ulcerative colitis. I normally take 5mg 6am and 5mg 2pm but trying to get down to 7.5mg eventually. Currently I'm on 13mg just having got over a colitis flare, so 8mg at 6am and 5mg at 2pm. This helps with my fatigue hugely.
Hi, I wonder if you have looked at your ESR and CRP levels recently? If they've gone up your headache may be related. It might be worth getting your neck and cervical spine checked out. Or have you tried different pillows in bed? Just a thought.
1) At your current dose of Pred are you PMR pain free? Should be, if not raise it to a level where you are.
2) There is nothing that says that you cannot reduce the magnitude of your steps further, nor that the time must be 4 weeks.
3) If not on Dorsetlady’s 5-7 week Simple Taper, I strongly suggest you consider switching to it. It’s much better for blending into a lower dose and flares aren’t as íntense.
4) If 0.5 mg decreases are uncomfortable due to symptoms of AI, consider 0.25’mg decreases.
I’d bet 3) alone will solve your issues and if not that and 4) will.
I’m not a physician, the above worked for me. I had PMR for 3.5 yrs. My criteria was no pain before taper and immediately respond to PMR flare (same day increase to counter), DL’s Simple Taper and max 10% of old dose decreases and was doing 0.25 mg decreases near the end. I didn’t rush it, and yes I argued with my Rheumy and he gave in, since my way worked, his resulted in flares, he acquiesced.
When you say ‘same day increase to counter flare’, what order of increase would that be for you? Up to the previous dose, or adding a bit more for a few days to counter inflammation?
Depends on the magnitude of the flare. Using DL’s simple taper, if I was going to flare it was on day 4 of week 3. I took my dose around 9 am and would feel the flare coming around 2 pm. I’d first would add back in the amount of the step I took out (so would equate to old dose). Once I was less than 5 mg/d (doing 0.5 mg decreases at this stage) usually that was enough and I’d just hold at the old dose for 2-3 weeks and try the same step again. If not, I’d add in an additional 2 mg to see if that would take care of it. That’s one advantage to DL’s simple taper. You get a warning before the inflammation has a chance to really build up, so doesn’t take much to drive it down, if you react immediately and not “wait to see if it gets worse”. That’s when you add insult to injury. If above 10 mg/d I’d do old dose + 2.5 mg and as soon as the pain went away, return again to old dose for 2-3 weeks and retry at 1/2 previous step.
When I hit 3 mg per day, I started 0.25 mg steps using 4-5 weeks, sometimes skipping week 4 and go straight to week 5.
Sorry I’ve somehow only just seen your reply - it’s very helpful xx
Hello Lovetobe,
This isn’t helpful, but felt exactly the same as you when I tried to lower my steroids from 7mg. I got down as far as 5 and a half mgs before throwing in the towel. Ended up having ultrascan, because of the headaches, but apart from some neck stiffness nothing was found. I’m now back on 7mg, feel fine except for some tiredness, and am not keen to reduce again.
This sounds so similar to everything I am experiencing. Still don’t have a new Rheumy but have a very nippy Rheumy nurse and this is the kind of feedback I’m dealing with. I’m being sent for blood tests again which show up nothing of use. Feel as if the medical treatment a very high factor in my poor health situation. totally overwhelmed. I hope you get some headway and some peace from all of this.
If you aren’t experiencing any PMR pain which means your Pred dose is equal to, or greater than what’s needed to manage the inflammation I wouldn’t expect the ESR and/or CRP to be elevated unless you are having other inflammation in your body. Now, have them take a blood sample while you’re in the midst of a flare and I’d expect they’d be elevated.
But they don't necessarily. Too many, especially nurses but doctors are guilty too, think that lab numbers are the be all and end all. In fact, you can be verging on a flare with increasing pain and stiffness but the levels aren't high enough for long enough to trigger the liver to produce the proteins that send the markers higher, and in some people they lag a long way behind. Don't know how you explain that to them though.
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