09:00am fasting Cortisol = 414nmol/L

[Slosh]

Happy Easter everyone and hope you are having a lovely weekend.

The sun is shining here (UK) this morning and so that always helps.

In my previous posts - I mentioned that a private Endo thought that I may have adrenal suppression - based on symptoms. Low blood pressure and heart racing the main ones.

I believe now the symptoms are due to Mast Cell Activation related reactions to foods and chemicals.

My NHS 09:00 fasting cortisol came back after my zoom appointment with Endo at 414nmol/L the range is 137 - 439.

Had tests at hospital do the got to the lab pretty quickly.

That doesn’t seem like adrenal insufficiency.

Are these tests reliable? I made sure that my last dose of Pred had been at 08:00 the previous day - so a break of 25 hours.

I’m questioning the adrenal suppression diagnosis now. And not so sure about taking the extra 15mg of Hydrocortisone daily whilst weaning off Pred.

Found the following articles:

onlinelibrary.wiley.com/doi...

This one is long and ‘interesting’ but can’t quite get my head around it at the moment.

bmj.com/content/374/bmj.n13...

Thanks in advance for any feedback.

Xxx

M

[PMRpro Ambassador]

Anything above 450 in the basal cortisol test is to be taken a perfectly normal and no need for a synacthen test as there is no adrenal insufficiency. To get that close while still on pred suggests a bit less pred will get you into the normal range.

This study seems to think it is reliable:

ncbi.nlm.nih.gov/pmc/articl...

and is more relevant and easier to understand probably that the links you gave (excellent and very useful, I've been looking for the Mackie et al study and couldn't find it).

Don't think I'd take the HC ...

Has the tachycardia been looked at closely? Is it extended or intermittent? I get dizzy during a tachy episode - the heart isn't pumping efficiently so BP falls.

[Slosh in reply to PMRpro]

Thank you so much.

I have dropped beats as well - the tachycardia is intermittent.

Going to wear a holter for a week from 7th May. Was referred for that over a month ago - but only available then. The NHS is so short at the minute.

I’m glad you get to read the Mackie paper.

I will read paper in your link - thank you.

I’m such a mix between old fashioned - ‘the doctor knows best’ and experience which leads me to ‘Nope not always’ and certainly not in fractured dislocated health systems. Plus just knowing my own body and needing to advocate for myself.

Such a toss up though!!!

[PMRpro Ambassador in reply to Slosh]

I know. My daughters (and a few others) are very keen for me to return to the UK since my husband died. But I would lose so much - above all very good medical care with a terrific rheumy who really knows his stuff. An ambo takes 10 minutes, 15 on a bad day. See GP same day. When you are nearly 70 and wobbly sometimes that is more important than the kids who work all hours god sends in the NHS being a bit closer!

[Slosh in reply to PMRpro]

I agree with you. Hard though for them and you to be apart.

Don’t think I would move back to the UK if it were me though. As you say they are so busy - you may be really lonely too.

Hope they are able to visit often though.

I am really wanting to go for an extended stay in South Africa and Australia. I think it will be good for my health right now. I live alone and since being so ill recently I really crave to be near my family to calm my nervous system as well.

My company basically approved that I can work abroad for 6 months but now group head office are saying no.

I am so absolutely gutted!! Even rented out my van for 6 months.

Also wanted to see my doctor in SA.