fatigue at 3.5mg but cortisol and synacthen in normal range

[Rosina1871]

I’ve felt particularly tired recently but my cortisol tests have been in the normal range. Is this usual?

[DorsetLady PMRGCAuk volunteer]

Cortisol tests may have been 'in normal range' - but they only show adrenals are capable of working, not how well they are!

Slow tapering, small steps, rest as necessary, time and patience required - they will eventually.

[Rosina1871 in reply to DorsetLady]

thanks for your reply. Reassuring. I’m reducing slowly by 0.5mg every six weeks using DSNS method.

[SnazzyD]

I certainly found that was the case. When my tests were low, I could have told them that. When it was better, whilst I felt improved, there was no rhyme or reason as to whether my adrenals would do their bit efficiently or not. Sudden demand after a shock or with sustained physical or mental stress could also cause a crash where I needed an extra 1mg or 2. If that happens you feel terrible not just a bit tired. Have you read the adrenal section in the FAQ’s? It’s the need to know info for anyone on the low doses. You might find you need to slow down your decent too as the dose drops.

[Rosina1871 in reply to SnazzyD]

thanks snazzy. Will take a look. I’m getting 7-9 hours sleep at night but still tired by lunchtime

[Blearyeyed in reply to Rosina1871]

Have you had any other blood tests done recently via your GP that could help explain the added Fatigue?If not it may be worth requesting your GP to do a full blood count, Vitamin B 12, Ferritin/ Iron, Folates and Vitamin D.

Low levels of these can increase the amount of Fatigue we suffer with any condition and both the long term use of steroids and PPI medications deplete our stored levels of B12 , Folates and Vitamin D and in turn our iron count.

Even if you are not low or deficient in these it is worth taking a complete vitamin and mineral after a meal on top of any supplements you may have been given for PMR , as this can also improve how well we cope during the recovery period at lower doses.

The hot weather can also cause us to be internally dehydrated even if we don't feel thirsty so if you haven't been getting the recommended amount of water each day , or have been perspiring a lot , it is worth increasing your water intake which can also improve the Fatigue. Hope you feel more yourself soon, Bee

[Rosina1871 in reply to Blearyeyed]

Thanks for your reply. just had a full blood count and all was normal . The hot weather doesn’t help but I’ve felt fatigued on and off for a while

[Blearyeyed in reply to Rosina1871]

Did you have any other blood tests?

[Rosina1871 in reply to Blearyeyed]

sorry replied in wrong place. Full blood count plus CRP

[Blearyeyed in reply to Rosina1871]

I'd ask the GP to request the other blood tests I listed then , it might just point to an issue that is pretty easy to solve and give you your energy back, take care , Bee

[Rosina1871 in reply to Blearyeyed]

will contact docs and explain my fatigue and ask for further blood tests

[perceptual63 in reply to Blearyeyed]

Add magnesium supplements to this list as I recently learned pred. decreases magnesium.

[Blearyeyed in reply to perceptual63]

Yes , I do take magnesium , to help the restless legs , circulation and nerve pain in general. One thing I have recently learned about taking magnesium though is to keep an eye on your sodium and potassium levels by getting a routine three month check of your electrolytes with a kidney function blood test. This is because magnesium can decrease your potassium and sodium levels.

One way to maintain the right balance is by timing, taking your magnesium in the evening after your dinner or with a little snack before bed improves your night time issues without having a big impact on the other two.

Having a banana at breakfast increases the potassium levels to what you require in the day , if you find you have low sodium levels you can return to adding a little more salt into your food between half to level teaspoon a day.

It's also worth looking up which type of Magnesium is the most useful for you as different types and combinations improve different conditions and quite often the basic magnesium types over the counter don't always hit the spot.

[SnazzyD in reply to Rosina1871]

yup

[SheffieldJane]

Me too! I try to abide by a regular nap, or even a lie down listening to an audio book, every day. If I have a busy day with stress good or bad, I try to deflate for a couple of days after - not easy for friends and family to understand but necessary to me.

[Rosina1871 in reply to SheffieldJane]

Thanks Jane. Yes if I’m going out in the evening I make sure I have a nap in the afternoon and I agree friends and family don’t have a full understanding of the problem. However, I don’t tell them that much 😊

[Rosina1871]

full blood count plus CRP

[PMRnewbie2017]

I'm now at 1.5mg and will stay there for a month before dropping again but to 1.25mg not 1mg. I'm 65 so a fair bit younger than you, and I have found I have to take a siesta between 3 and 4pm plus this hot weather makes it worse. Can I just say that needing to take a nap and feeling weary in the afternoons isn't that uncommon as we get older. I've asked friends who are between the ages of 66 and 78 who are "healthy" and they all have a slump in the afternoon. I know a 26 year old who has forty-winks after lunch to recharge! For me, I definitely get my second wind around 5pm and if I think back I've been like that for much of my working life, needing to have a cuppa with a biscuit at around 3.30pm. Unless you are absolutely wiped out and unable to function it may be just part of ageing and because your Adrenals are not fully functioning yet. Remember it takes up to a year once totally Pred free for the whole HPA axis to function normally again and full balance to be restored..

[Rosina1871 in reply to PMRnewbie2017]

thank you