An Interesting Three Weeks

[Bcol]

Hi all, my apologies for not being being around recently but been a tad tied up. In short, around three weeks ago, I wasn't feeling as well as usual, I took my BS on a Monday morning as normal and it came back at 3.4mmol/L's, not a good start to the week. Got that sorted and it seemed to settle down to it's usual 4.7-5.7mmol/L. I was on 2.0mg Pred and thinking about dropping to 1.0mg at that point. Had three of the GC's coming the following week 5,6 and 7years so stayed on 2.0mg. We had a fab week. Decided to make the drop to 1.0mg on the Monday, last week - not a good idea! In a couple of days I felt dire, diarrhea, low BP, feeling nauseous etc. Decided it must be Adrenals and went back up to 2.0mg, things improved, had a day at 5.0mg and we were back to normal. Had two days at 2.5mg and then on Sunday dropped back to 2.0mg (where I starred the week at). Decided a Basal Cortisol test would be useful. Rang the doc and had an appointment on Tuesday, explained all. Had a Cortisol and full bloods tests early on Wednesday morning, before taking meds. Results back yesterday, no surprises anywhere, all were good apart from one, the Serum Cortisol result, not what I was expecting, came back at a whopping 749nmol/L, way above the normal high. Just reading that when I had a message from Docs asking for me to make an appointment to discuss the results. Will update after discussion/appointment.

Will just add that planning a move is not a particularly stress free activity as well.

Stay well all, snow and -7 here at the moment, too cold for early walk with the bowwow.

[DorsetLady PMRGCAuk volunteer]

Hi,

Thought you’d been a bit quiet- sorry to hear why.. I’d be staying put at 2mg for a while….for many reasons, adrenals, weather and planning a move.

All the best…

[SnazzyD]

I had a few occasions where it felt like my adrenal axis didn’t work and then suddenly got its act together, later on. As DL says, perhaps go up to 2 but I certainly wouldn’t be reducing in whole mg’s but 0.5’s. I would have thought that if a small increase has such an effect, it will do so in the opposite direction.

[Bcol in reply to SnazzyD]

Hi Snazzy, yey have always gone in 0.5mg steps and wasn't so worried about the problems which I got sorted. I, and I think the doc was expecting the Basal Cortisol test to come back low and instead it's thrown us by coming up extremely high. I think, that is what he now wants/needs to discuss with me. Probably/may need another test to see if it is an odd one off or an actual problem.

[SnazzyD in reply to Bcol]

I had to have emergency Hydorcortisone IV (which worked like a charm) after a week of severe Covid with a lot of pain. My cortisol the next day was about the same as yours. The Endo who came round said it might have been that for whatever reason my adrenal axis didn’t do its thing but got into gear eventually. This happened again when I had Covid this Dec. After a week of high fever and pain the same happened but this time I saw it coming and took 5mg and lay very stil all day. It passed after some hours. The other two covids in Sept which were really mild with minor pain and fever it didn’t happen.

[Bcol in reply to SnazzyD]

I didn't have a lot of pain, but an awful lot of what is on the Adrenal Insufficiency list. If I hadn't managed to get under control it was going be a 111 call.

[SnazzyD in reply to Bcol]

Sorry, my point was that temporary adrenal insufficiency was felt because something that in my circumstances (pain and fever and dehydration) was prolonged and extreme. My cortisol levels were ok on a normal day, but my output of cortisol packed up. Once I was treated and the dust settled, my levels were fine. I can quite believe your levels were fine one day but not on another after being really busy.

[PMRpro Ambassador]

Ah, the joys of life and chronic illness!! I have to say - under the circumstances, I'd be doing a second test in case the lab made a bollocks. It happens!

Other than the last couple of days when it snowed, somewhere between 4 and 6 inches depending on where you were and was more about freezing level, we have had minus well into double figures in the early mornings, doesn't stop anyone really, still people riding bikes with no gloves on! Supposed to be warmer next week though.

[Bcol in reply to PMRpro]

Sunday onwards it's supposed to be going up to 15 degrees, it's very weird. I'll see what the doc says re tests and if it goes pear shaped before then I'll ring them again.