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Anyone ever had issues with Cortisol levels?

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
M

MarkGeordie

Well-Known Member
Relationship to Diabetes
Type 1
I’ve had on going issues for around 1.5 years now and seem to be no nearer to an answer which is starting to frustrate me now and affect my mental health.

During this period, I have on and off experienced various symptoms, which are:

1.My face and neck feeling hot, like a hot flush type feeling.

2.Dizziness.

3. Low mood.

Had various chats with the GP & the endocrine consultant and tests including routine blood tests, hormone testing and a 24 hour cortisol test.

Nothing came back wrong, except when i was last in clinic the DSN happened to notice some of the results had come back and the cortisol read “undetectable” but the consultant said she was looking to see if it was high as she suspected Cushing a disease.

Would the “undetectable” not suggest it was low or something else?

The symptoms are frustrating now and affecting my mood more now because when I have the hot feeling I tend to have it all day long and it’s uncomfortable and stops me doing day to day stuff.

It’s not like it happens everyday either. I can go a few days as normal and then get a full blown day with this.

I’m out of ideas but I do need some help.
 
Hello Mark,
If you your levels are low then the condition is called Addison's disease, so you can look that up to see if it sheds any light for you.
 
Pumper_Sue said:
Hello Mark,
If you your levels are low then the condition is called Addison's disease, so you can look that up to see if it sheds any light for you.
Click to expand...

Yeah I already looked it upbut what confused me was the consultant when she rang me in Feb said it was nothing to worry about so that just made me more puzzled.

surely the symptoms have to mean something.
 
MarkGeordie said:
Yeah I already looked it upbut what confused me was the consultant when she rang me in Feb said it was nothing to worry about so that just made me more puzzled.

surely the symptoms have to mean something.
Click to expand...

Are the symptoms known to associate with Cortisol levels Mark? Or did the ‘nothing to worry about’ suggest that the undetectable result may have been a lab error of some kind, and a subsequent test has been normal?
 
everydayupsanddowns said:
Are the symptoms known to associate with Cortisol levels Mark? Or did the ‘nothing to worry about’ suggest that the undetectable result may have been a lab error of some kind, and a subsequent test has been normal?
Click to expand...

Well from what I know it was one area they were exploring.

Both the DSN & consultant said that they were low compared to high which is what they thought they might of been.

So that made me think the undetectable meant they were low enough to not be recognised because they never said there was any errors or any further tests were required.

She just said she would see me in clinic but with everything going on I’ve not had a letter and don’t expect to soon.

I hate bothering the doctors but the symptoms are persisting, there affecting me awfully when I experience them and just not sure what to think or do.
 
You're wrong there Mark. Now IS the right time to 'bother the doctors' and ask THEM what you should think and do!
 
trophywench said:
You're wrong there Mark. Now IS the right time to 'bother the doctors' and ask THEM what you should think and do!
Click to expand...

Just not sure what to ask.

Obviously the consultant said she said the results were fine and that she would see me in clinic.

Not sure whether to ring the DSN and see if they can get my concerns to the consultant or whether I should ring the GP and ask for some clarification.
 
Ring DSN sounds good to me - say what you said to us about symptoms persisting, worsening and becoming unbearable in the time since you haven't been able to get more 'proper advice' from anyone, hence you don't know what to do.
 
trophywench said:
Ring DSN sounds good to me - say what you said to us about symptoms persisting, worsening and becoming unbearable in the time since you haven't been able to get more 'proper advice' from anyone, hence you don't know what to do.
Click to expand...

Yeah I’ll contact the team tomorrow and see if anyone can speak to me.
 
MarkGeordie said:
Yeah I’ll contact the team tomorrow and see if anyone can speak to me.
Click to expand...

Fingers crosses for you Mark. Hope you get some good support, and helpful information.
 
Ask what the number was can't guarantee to be able to help but Mikeyb would know what the result meant.
 
Pumper_Sue said:
Ask what the number was can't guarantee to be able to help but Mikeyb would know what the result meant.
Click to expand...

The consultant just said “undetectable” which we all assumed meant off the scale at the low end but I will ask the DSN for confirmation.
 
I contacted the DSN who rang me back today and she has said all she can do is email the consultant and ask them to make contact with me. She said give it a week and call back if I’ve heard nothing.
 
Sorry for the double post. The Endocrinologist rang me this afternoon and after discussing it all thoroughly she wants me to go into the hospital for some urgent tests.

Not sure on an exact date or anything as she’s unaware exactly how logistically this is going to work with the current situation but she’s going to contact me again when she knows how it’s working.
 
Hi Mark,
A request for urgent tests but no date must be a bit of a worry, hopefully the consultant will be able to get some answers on that quickly for you.
Hope you finally get to the bottom of it all soon and can get some relief from your symptoms.
 
LucyDUK said:
Hi Mark,
A request for urgent tests but no date must be a bit of a worry, hopefully the consultant will be able to get some answers on that quickly for you.
Hope you finally get to the bottom of it all soon and can get some relief from your symptoms.
Click to expand...

Lucy, yeah not knowing how they are going to coordinate it is a worry but she did say I would hopefully hear by Friday with regards to what I’ll need to do.

I’ll wait and see and keep my fingers crossed.
 
@MarkGeordie - I have an Endo appointment for next Friday. My GP, not too helpfully, refused to arrange the blood tests required by the Endo, in preparation for the appointment.

When I rang the department to ask how best to proceed, the essence of what they said was that there's more going on in the world than COVID, and people still need treatment and investigation.

Hospitals, aside from what are described as Red Areas, are empty. A&Es are empty, and whilst some clinics have swapped appointments to telephone appointments, some are still going on.

Following the Endo's intervention, I have had my bloods drawn, at my local cottage hospital (GP still refused). I have an SMS from the hospital this morning confirming my appointment, and instructing I attend, as usual, unless I have various symptoms, or they write to me to change things.

If your tests are considered urgent, I imagine they will be able to accommodate.

Good luck with it all
 
AndBreathe said:
@MarkGeordie - I have an Endo appointment for next Friday. My GP, not too helpfully, refused to arrange the blood tests required by the Endo, in preparation for the appointment.

When I rang the department to ask how best to proceed, the essence of what they said was that there's more going on in the world than COVID, and people still need treatment and investigation.

Hospitals, aside from what are described as Red Areas, are empty. A&Es are empty, and whilst some clinics have swapped appointments to telephone appointments, some are still going on.

Following the Endo's intervention, I have had my bloods drawn, at my local cottage hospital (GP still refused). I have an SMS from the hospital this morning confirming my appointment, and instructing I attend, as usual, unless I have various symptoms, or they write to me to change things.

If your tests are considered urgent, I imagine they will be able to accommodate.

Good luck with it all
Click to expand...

Thanks that’s very helpful.

The consultant seemed concerned when she learnt of everything going on and said she was marking the tests urgent she just wants to sure how they were all been conducted.

I’ll keep you all informed I’m just glad she’s willing to investigate furthwr because the routine blood tests, hormone, testosterone and cortisol tests were all normal she said.
 
Hope your appointment comes through quickly Mark, and that you get some answers from the further investigations soon.

Thanks for keeping us updated.
 
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