when can you have an adrenal testing?

[jarn]

Just had visit with Rheumy. I am at 2mg Prednisone and asked if I could be tested for the adrenal and was advised that I must be OFF Pred altogether. It seemed that I read here that it could be done when down to 4mg? Kindly correct me on this. As usual, this is the best forum as we can all attest. Had a discussion with the nurse and advised her to have a look at this account as she was saying that we should be off Pred in 2yrs........sound familiar?? Thank you in advance and Halloween Haunting to all.

[PMRpro Ambassador]

He wants to brush up on his endocrinology! Ideal is off pred altogether. However, if you tell a patient to get to zero before testing and they have no adrenal function - there is a risk you might kill them by putting them at risk of an adrenal crisis.

Once you are below 5mg you can get some idea of what is going on, at 3mg it is more reliable.

Good for you spreading the word on the 2 year myth!!!

[jarn in reply to PMRpro]

If it wasn't for you and this forum we patience would certainly be in the dark and lettuce stray. It is obvious that so often they are stuck in their own sphere of learning that they won't look in other areas. I appreciate hearing that I was on the right track and thank you again for all of this. I was hoping I would be off the print altogether at this point but easy does it I guess from 2 mg onward. Last year I did see my neuro-ophthalmologist and he placated me by saying he had patients that stayed on prednisone for years and years with no complications but he did say they were and roughly 3 mg of bread. So having all of the information is heartening and does help us to make personal decisions. Thank you to you all on this form

[jarn in reply to jarn]

omig............I dictated the response and can't you tell?? Slur/mumble etc but am sure you got the gist of it. Hilarious how Pred became bread? print?🙃apologies but am sure you could decipher

[PMRpro Ambassador in reply to jarn]

I did wonder!!!!

[jarn in reply to PMRpro]

🤪I bet you did! Probably thinking it's a little bit too early for some bubbly. Thank you for understanding

[PMRpro Ambassador in reply to jarn]

Predictive text manages some superb howlers too!

[jarn in reply to PMRpro]

Perhaps it makes for some interesting reading. Other than confusing the readers

[proactive in reply to jarn]

And I see there is some lettuce to go with the bread...lol

[Sophiestree in reply to jarn]

I loved it... made me giggle with my morning tea!

[Dancingqueen77 in reply to Sophiestree]

That’s why we all need to check what we’ve written before sending

[jarn in reply to Dancingqueen77]

But then we wouldn't have as much fun with the mystery

[Mfaepink1973 in reply to jarn]

I once messaged a friend to say I was going to Asda and did she need anything bringing back. Asda was interpreted as Asia! 🤣

[jarn in reply to Mfaepink1973]

Yup! I never proofread until I hit send, so we are speaking in another language, aren't we

[SnazzyD]

My Endocrinologist said he tested at any time from 4mg downwards but the lower the dose the better. This is because the lower the dose, the more the adrenal glands can show its true colours. I was given a Synacthen test at 4mg and 1.5mg. My various rheumies were pretty clueless about adrenal matters which is absurd because it is basic stuff and they prescribe the steroids that suppress them. It was my GP who sorted out the referral and test.

[jarn in reply to SnazzyD]

That is why we need forums like this where we can share with fellow sufferers. Thank you, snazzy, as this does answer a question and I can pursue it in future. So I guess on the one side my doctor was correct and that we need to be at a lower level but she did emphasize that I had to be off the bread all together. Which makes sense because she has been pushing for that all along. Thank you again always encouraging to share opinions

[LemonZest11 in reply to jarn]

Yes, PMRpro and DorsetLady and the others know more than all the so called professionals put together!! Only trust their input.

[jarn in reply to LemonZest11]

Indeed. Because they have truly lived the experience unlike these doctors who are so willing to hand out advice out of their notebooks. Aren't we fortunate to have found this site

[LemonZest11 in reply to jarn]

A life-saver.

[marionofnorwich in reply to jarn]

And they get paid handsomely for it, the doctors

[DorsetLady PMRGCAuk volunteer in reply to marionofnorwich]

Glad you clarified that….thought you meant PMRpro et al initially - we wish! 🤣😂

[Rugger in reply to jarn]

She wants you on a low carb diet, then? 🤣

[Mfaepink1973 in reply to Rugger]

She definitely wants Jarn to cut out the bread!

[piglette]

Sounds like your endo is creating a catch 22. You cannot be tested unless you are at zero, if you reduce to zero and there is no adrenal function it could kill you!!

[jarn in reply to piglette]

Isn't it just amazing that a rheumatologist would not be aware of that? That is why we rely on everyone on this wonderful forum. Appreciate your response piglet

[Longtimer in reply to jarn]

What worries me is what about those people that don’t know about this forum, and are being fed such rubbish. Shocking about some of the Rheumies nurses etc that arrogantly believe what they do!….

[Mfaepink1973 in reply to Longtimer]

Some of the PMR Facebook groups are as bad, the odd time I read any of the posts I’m horrified by the advice others give! I always refer them to this forum and the charity

[Longtimer in reply to Mfaepink1973]

I have never been on facebook, but have been told about PMR advi ce on there.....same as you...

[Bcol]

It's a bit scary when the professionals can get it so wrong, had mine at 2.0mg which was fine although the results were not what we expected.

[dottydoris28]

I had a telemedicine appointment with 'someone' in Endocrinology last week. I was told I must come off Prednisolone, I could drop from 1.5mg to 1mg that same day. I couldn't have a Synacthen test until off Pred but reluctantly told I could have a Cortisol test. I did have a Synacthen test last year while at 5mg Pred after a few health issues and the result was 'good', but then it would be at that dose. I shall carry on reducing slowly ....