1st Endo Consultation.

[Jamima]

I had my 1st endo consult today by phone. She was lovely, a little concerned that my cortisol was low and has asked for a 9am blood cortisol along with thyroid, ferritin and vits d&b to be re-tested. Is this the usual way to proceed?

[Lalatoot]

Yes. Good she is starting with the basics to give her something to work from.

[Jamima in reply to Lalatoot]

Great, it’s a whole new world for me but she comes recommended. Many thanks.

[Odbod in reply to Lalatoot]

please tell who this endo is please

[Jamima in reply to Odbod]

I’ve sent you a pm.

[jjdr957 in reply to Jamima]

Please could you tell me also who this endo is,I would be very greatful

Many thanks

[Jamima in reply to jjdr957]

No probs, I’ll send a pm.

[Spangle15 in reply to Jamima]

Sorry, and me too please.

[Jamima in reply to Spangle15]

Just sent.

[Odbod in reply to Jamima]

thankyou. He will be fed up if we all contact him me thinks

[Jamima in reply to Odbod]

Haha, yes, I should be on commission.

[ZeilaJee in reply to Lalatoot]

Yes - please pm me too!

[Jamima in reply to ZeilaJee]

Will do.

[Merlio18 in reply to Jamima]

Please can you pm me the details of the endo also

[Jamima in reply to Merlio18]

Will do.

[feegee26 in reply to Jamima]

Please can you pm me your endo thanks

[Jamima in reply to feegee26]

No probs.

[fuchsia-pink]

Not in my experience! She sounds super!!

At my last appointment, I asked if my endo might consider testing B12 (this was before I found this forum) as the pharmacist had recommended it and he rolled his eyes and said "That's only useful if you're hypo" - at which point I had to remind him that that was why I was seeing him

[Jamima in reply to fuchsia-pink]

From reading on here they do seem to be a mixed bag! I’ve no idea what to expect but she talks through her thinking and asks if that seems reasonable which seems very fair. I’m hopeful...

[Kimkat in reply to Jamima]

What part of the country do you live in?

[Jamima in reply to Kimkat]

Hi Kimkat - I live in Scotland.

[Hidden]

Did she say what your cortisol level was?

[Jamima in reply to Hidden]

I had my own 24 hour cortisol from regenerus done. It’s on one of my posts here but I’m sorry, I don’t know how to re-post it on this thread. It’s low but not super low.

[Hidden in reply to Jamima]

I've just had a look at your old posts & your cortisol is low, Hopefully she will do an 9am cortisol & then if that shows low, she will do a short synacthen test which will see what your adrenal function is like. She should also do an ACTH blood test at the same time to see if there is a problem with your pituitary.

[Jamima in reply to Hidden]

She said that the data they have from historical SST allows them to do an accurate 9am blood test. Apparently there was some shortage of synacthen? So the 9am was developed as an indicator instead. Does that sound right?

[Hidden in reply to Jamima]

Not really! The Short synacthen test is done quite frequently for patients, usually following the 9am cortisol to see how the adrenal glands respond to the artificial ACTH. If you are on Facebook then join the UK Addison's disease & AI info & support group, you will get lots of support & good help on there.

[Jamima in reply to Hidden]

Thank you Pauline p, I’m afraud I’m not on FB. Do you think I should be concerned about the cortisol?

[Hidden]

It certainly seems to be on the low side & could be the reason you feel unwell. Have a look at the UK Addisons disease website for more info. addisonsdisease.org.uk

[Jamima in reply to Hidden]

Many thanks, I will.

[SlowDragon Administrator in reply to Hidden]

Can I ask Hidden

When/why is 24 hour urine test for cortisol used?

[Hidden in reply to SlowDragon]

Hi SlowDragon, the 24 hour urine is a gold standard test for looking at high levels of cortisol with investigations for Cushing's syndrome. It can also be used for low cortisol but I don't think it is as accurate as other tests for low cortisol. As you know cortisol levels vary during the day, being at the highest level first thing in the morning & dropping throughout the day, so by collecting 24 hours worth they can see what the total cortisol level is. With Cushing's cortisol levels tend to be high throughout the day & don't drop, often if a person has an early morning blood test for cortisol it can come back at normal levels & so the patient is discharged, however it they do the 24 hour urine they then see that the levels stay the same through the day & are high at night. I often recommend that if people do the saliva 4 points test if they are looking at Cushing's, that they do them on 4 consecutive nights rather than in the day. Hope that helps?

[SlowDragon Administrator in reply to Hidden]

Thanks...very clear

[Merlinmog]

Hi jamima

I too had my first endo appointment yesterday and I also have a low cortisol reading,all my other bloods were ok but I do have empty seller syndrome ,they are going to run some more tests but it is looking like I have got addisons.

[Jamima in reply to Merlinmog]

Thanks Merlinmog, I hope it all goes well for you after the tests.

[Hidden in reply to Merlinmog]

Do you know what your actual results were? With empty sella syndrome they will need to do a full pituitary to check all the other hormones as well. Have a look at the Pituitary foundation website & the Addisons' disease website for more information. I have secondary adrenal insufficiency from a pituitary tumour so am on steroids, it's more or less the same as Addison's with the same treatment but not due to an auto immune condition. If you are on FaceBook then join the Addison's disease & AI info & support group for some great help & support.

[Merlinmog in reply to Hidden]

Thanks for your reply,I also have lupus and sjogrens so it complicates things a bit,after 4 years of having a permanent headache I just want to get to the bottom of why I'm in so much pain all the time and feeling sick.

[Hidden in reply to Merlinmog]

I have psoriatic arthritis as well. I hope you get some positive help soon.

[Shivvers]

Would you please PM me her name. Thank you.

[Jamima in reply to Shivvers]

Just sent.

[ZeilaJee]

I have been to see an endo recently - not a total success - but she said that it's really important to do lots of exercise as this raises the Cortisol levels and makes you feel much better. Since her advice I went mad for the first few weeks (10k-17k steps)and then settled down to a fairly lazy amount of exercise. I do feel very good (really!) when on the exercise and more sluggish and bleh when not taking much. It's good the long term too if I can keep it up through the winter... I now do between 7k - 11k steps a day on a walk. It should be more - and a bit of yoga which really helps with mood and energy too. A self-healer to start with?

[Jamima in reply to ZeilaJee]

I agree, and am a big walker, but I’m just too exhausted and weak to do that much just now. I’m aiming for it though!

[Catnap5]

Please could you let me have her name too? Thank you!

[Jamima in reply to Catnap5]

Sureness no probs.

[Eryngium]

I'm so pleased that your first consultation was a success Jamima. I hope that you don't mind me asking but I'd be really interested to learn what measures your endo takes to raise your cortisol. I too have very low cortisol but passed the SST test. Due to this my GP just dismissed the results from Regenerus & unfortunately he won't refer me to an NHS endo. I've saw one privately last year who didn't help atall. I'm no longer able to work due to being sickly tired & dizzy which I believe is due to the low cortisol. I hope that your recovery has now begun x

[Jamima in reply to Eryngium]

Thank you Eryngium - I’m not sure what, if anything, my endo will prescribe. She’s asked for up to date blood work but my gp today refused to do the 9am cortisol and vit d so I’ll have to source this elsewhere. I completely understand the work thing, I had to close a small business I ran as I just couldn’t manage, that was 3 years ago and my fatigue was classed as menopause related even though I was taking hrt. I continued working in another small business I have and was the main carer for my ex partner through 4 knee surgeries. I was exhausted and just didn’t recover even increasing hrt, in fact the hrt made me feel worse. So it gets to the point where your body just crashes and there’s just no way you can continue. I empathise with your situation and I’ll keep posting with updates, hopefully positive ones, that might be of some help to you.

[Eryngium in reply to Jamima]

This is typical of GP's Jamima. Don't be disheartened. I've used Medichecks alot for private blood tests. They offer a cortisol blood test. They send you out a kit and it's just a small finger prick & you express some blood into a sample bottle and send it off to them. They email you results in a couple of days. Then you can email it to your consultant. It's wonderful. They usually have money off on a Thursday. They are very helpful. My GP completely dismissed my regenerus cortisol saliva test because they don't use it on the NHS ....totally ignorant. x

[Eryngium in reply to Jamima]

£11 off Medichecks today on their Thyroid test but cortisol blood test would be separate. Thriva also offer blood tests but don't have a cortisol test as yet .x

[tattybogle]

I do hope this nice sounding endo doesn't get trampled in the rush. Sound's like she's going to need bouncers at her next clinic.

You really should ask for commission Jamima !

[Jamima in reply to tattybogle]

I know! How sad though that people become so desperate for help. This place is a great resource.