Adrenal Insufficiency

[SueMacD]

Hi all, Just an update. I was diagnosed in 2017 with PMR and GCA, started on 60mg Prednisolone, had a few blips along the way so started on Dorset Lady’s slow taper and currently on 3.5mg. Had to fight hard with GP to get referred to an Endocrinologist as I have been feeling fatigued and unable to taper further. GP told me he could not do a cortisol test as he did not know how to interpret the results (unbelievable), so eventually he wrote to the Endocrinologist to ask for advice. The hospital gave me an appointment fairly swiftly, did a Synacthen test and declared I had AI. I have been issued with “sick day rules” and a kit for self injection in case of a crisis whilst I await investigation. The hospital then wrote to my GP and said he needed to refer properly. I am now awaiting an appointment. I would just like to thank everyone, especially PMRPro and Dorset Lady, who have supported me along the way with your wise words. Without you I would not have known about AI and continued tapering and possibly ended up having an adrenal crisis. I feel that I have learned so much from you, especially in the absence of support/knowledge from any of the GPs I have encountered on this journey. I feel able to fight my corner, backed up with everything I have learned from you this 5+ years and positive that I will get to zero Prednisolone in the not too distant future.

[PMRpro Ambassador]

Think I might suggest to said GP that MAYBE it could be a topic for his CPD at some point. What a wally! I can provide a few links to broaden his knowledge ...

[DorsetLady PMRGCAuk volunteer]

Good to hear that hospital sparked and best of luck for future….

[Longtimer]

Unbelievable but you got the test in the end. I have AI too the fatigue and other symptoms are so controlling on our lives. Did you find out what your readings were?…Went recently to see an Endo she was a standin..I knew more than her! but don’t let that put you off… my numbers are finally rising… have started this week on Hydrocortisone……hoping it will help.

Keep us posted how it goes

[SueMacD in reply to Longtimer]

The numbers I was given was 265 at first blood test, then 379 at second blood test. To repeat in 3-6 months. Hopefully adrenals will have kicked in a bit more by then.

[Longtimer in reply to SueMacD]

Quite good really, my first was 92, then 260 I think, then dropped to 124, no idea why. When I got to 5mg recently saw useless Endo. it was in 300’s didn’t mention seeing me again, last chat with Rheum we decided that I should try Hydrocortisone, I’m 2 days in, so early days. Not much we can do really to help things along. How do you feel? Not well at all myself, like you incredible fatigue and very heavy aching legs…We struggle on, we’ll get there.

[SueMacD in reply to Longtimer]

Hi Longtimer, like you heavy legs, start off on a walk fairly sprightly but it’s not long before I feel I’m dragging my legs along. By 3pm each day I feel I could quite easily fall asleep, I slow down but try not to give in to it. Just got a text to say I have an appointment on 28th with endocrinologist, fingers crossed . Sorry you’re not feeling well, we will all get there, slowly but surely.

[Longtimer in reply to SueMacD]

Good news about appointment let us know how you get on. As for heavy legs, I wake with them so struggle to walk. As you say slowly but surely.

[Amkoffee]

I got my AI diagnosis 1.5 years ago right after coming off of pred. If you have questions about crisis or anything I'd be happy to share what I 've learned thus far.

[LizMitchell in reply to Amkoffee]

Thank you

[LizMitchell]

I have read your post with interest, as I too have Adreanal Insufficiency! I am +7 years in to this unwelcome journey and currently taking 5mg of daily Prednisolone and 15mg of weekly Methotrexate. I have had 2 short synacthen tests, one in 2018 resulting in "consistent with a degree of adrenal suppression" when taking 6mg of Pred! The second test in July this year whilst on 5mg of Pred was "suboptimal", but went on to say that "I could still try to reduce the Pred dose very slowly, but be aware that if I am in any way unwell, I will need to increase my steroid dose and this would include any procedures such as surgical input"?? No information was provided for this latter comment! Until I read your post I didn't realise that there were "readings" for the synacthen test, because I have never been given any, and I have never heard of "sick day rules and a kit for self injection in case of a crisis"! I would love to know more! Thank goodness for this wonderful support website, because without it we would be "largely in the dark" about our conditions!

[PMRpro Ambassador in reply to LizMitchell]

Most endocrinologists won't do a synacthen test until the patient is below 5mg pred because the results don't show anything reliable - 5mg is still enough to suppress adrenal production of cortisol. There are people on the forum whose function was inadequate at 5mg, poor at 3mg and good at 1.5mg.

[LizMitchell in reply to PMRpro]

I must admit, I did know this, but then it was my Rheumatologist decision to go ahead with the test! Next time I speak to her I will ask if it’s possible to have the measurements from it.

[SueMacD in reply to LizMitchell]

Hi Liz, I believe a cortisol of >420nmol/L at 30 mins post Synacthen test indicates an adequate adrenal response. I was given a patient information leaflet which is very helpful and hopefully you can access it on cut.nhs.uk/patient-informat...

Hope you find it helpful. It’s a Cambridge University Hospitals NHS Foundation Trust leaflet.

[DorsetLady PMRGCAuk volunteer in reply to SueMacD]

This takes to page mentioned by SueMacD

cuh.nhs.uk/patient-informat...

[LizMitchell in reply to SueMacD]

Thank you

[SueMacD in reply to LizMitchell]

sorry (no glasses), that link should be cuh.nhs.uk (not cut)

[LizMitchell in reply to SueMacD]

No problem 😊

[LizMitchell]

Thank you, that’s really helpful!