I am due to see my Endo next week, and have a telephone consultation booked with my GP tomorrow to discuss which bloods I should have re-run.
Following my last Endo appointment in March, at his request I had a raft of blood tests done to try to get to the bottom of my temperature regulation issues. The results of all of those were negative for lots of nasty antibodies, although the P-ANCA was classified as "Indeterminate". Again, on his instructions I have gone GF as "people with AI issues do well on GF".
Naturally, I have been monitoring my symptoms closely, and the longer it goes on, the more convinced my issues have a link with cortisol. It really is cyclical, linked to my circadian rhythm. In the mornings I am comfortable, but my mid afternoon I'm feeling the chill, and by bed-time, I'm ready to get under my Tog 13, often with a hot water bottle. At the moment, I think I am about the only person truly comfortable in the heat, and actually feeling less chilled at night too; although I am still under the Tog 13.
The only time my cortisol was tested was in January, about 10:30, having been sent directly from my Endo consultation (different Endo - long story, I'll spare you!). On a stated range of 6-23, my test returned 6.95.
I intend to ask for that to be repeated before I see the Endo next week, on the basis of my findings, and I know I should really have the blood drawn early. I can easily be at the walk-in blood clinic for 8am.
My query is, although in range, what do people think of the score, in relation to both the range and the time of day the blood was drawn?
Thanks in anticipation, and apologies for asking so close to my appointment, but it's been a bit busy of late!
Written by
MMaud
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The cortisol is in range but does depend on time of day. you can a more in depth look at this with a cortisol saliva test that tests it four times in one day so you can see if anything shows up or whether you're too low by bedtime to see if actually correlates as cortisol is highest in the morning so wont tell you much about what they are in the evening. Medichecks have it on offer at the mo.
Cortisol levels are often interrelated to blood sugar levels so you could get a cheap blood glucose testing pack from the pharmacy and test these over a few days. Sounds a silly question but are you eating enough calories? Many people don't and your body would find it difficult to warm you up if not enough calories in the first place.
How long have you been gluten free for? My temp improved a lot after this but took a while.
Also have you had Vit B12, folate, iron and Vit D checked as many of us thyroid peeps are deficient in these. Are you optimally medicated for your thyroid?
I realise cortisol almost follows a circadian rhythm, being highest early in the morning, then dropping, over the day, in readiness for bed. My query was admittedly a tricky one, asking about an interim figure (i.e. mid-morning) which appears already to be close to the lab range.
I appreciate there are other tests, but it is building an argument to have them done, without, at this stage paying privately, again.
I am 160cm and weigh 48/9kg, so am very slight, but I do eat 2000-2500 calories a day, so I'm not in calorific deficit. I My B12 and Ferritin are both fine, with 2 separate Endos commenting on my very healthy natural Vit D level, saying it was a very long time since they had seen such good natural Vit D, but then I usually do spend the winter months overseas in the tropics.
I've been GF since the beginning of April and feel well on it.
I guess I'll just have to have the conversation with my GP today and the Endo next week and take it from there. It's just so frustrating.
Okay, hope you get somewhere with the docs. If you don't and to give you idea, the cortisol testing is £59 at the mo and the glucose packs are about 15-20 pounds for a few days worth of tests.
It might take a little longer in regards to GF as although I had some improvements more immediately, it took longer for my immune system to go down and some things took six months and a few even took a year so you might still get even better yet. Good luck
Having spoken with my GP today, I'll be having a repeat of the cortisol test tomorrow morning, fasted. The last one was mid morning, after my breakfast. The Endo sent me from my consultation to the Endo Test Centre just a few doors down the corridor to have my cortisol bloods done. Surely he should have known better? (Where's the head beating a brick wall emoticon when we need it!?)
When I explained my findings relating to the GF eating and why I am convinced the underlying issue to my temperature regulation is due to a cortisol (or other cyclical hormone issue), she got very interested and agreed she could see how I had arrived at my conclusion.
Anyway, bloods tomorrow, Endo next week, and we'll see where we go from there.
When you mention glucose packs, what is their purpose? That's a new one on me.
sorry, my name of them prob didn't help lol. You can buy the packs of glucose blood monitors that diabetics use to monitor their levels throughout the day. They often do a three day review cheap pack with everything you need for a few days and instructions included - finger prick tests. I think the name of the last one i brought was called Accu-chek - diabeties three day review. Many pharmacies will do a one off test for you for free anyway but these are worth buying if you want to see what happens over the day and how stable they are and if there's any difference at night?
I thought that's what you meant, but it's never good to assume.
I'll be fine for that. I can go back years of testing several times a day. Yes, I drew the Diabetes card too. :o)
My bloods are pretty tightly controlled, and my highest readings are always in the mornings, but even in those not in the Big D Club, that is very often the case.
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