re-saliva cortisol test at University Hospital Southampton

[samfalulu]

Hi, thanks to those who directed me towards the info from NBob re saliva testing at UHS.

I got in touch with my doctor re this and she duly got in touch with UHS. The response in my doctors letter was as follows:

'We contacted the UHS biochemistry department and they do indeed do a salivary cortisol but it is not free and there is a cost. They would normally get requests sent in by local labs so I have spoken to the lab at the Royal ( my local hospital) and they confirmed that they don't do this as these tests are quite complex in interpretation at times and that maybe we should reconsider referring you to the endocrine team'.

I called the UHS number that NBob had given and sure enough you get straight through to the bio dept'. However they're not too happy that a member of the public called them - fair enough - but confirmed that the referral would have to be from a local lab.

I did a saliva test via Genova some years ago when I read up on the condition which showed my adrenals to be exremely fatigued. Prior to that 2005 I was told I had ME!!! After the saliva test I found Dr P and carried out a 24 hr urinary test which showed me being slightly hypo but mainly adrenal. I had 'Carrie' like symptoms which were as scary as hell and not kidding about the Carrie reference! After a long spell in bed and then meds from Dr P I even got back to playing tennis and team tennis, Wasn't a hundred % but such a marked difference. I thought I might have just got well and stopped taking what Dr P had prescribed. 2011 started to experience less energy until 2012 had the mother of all relapses and returned to old symptoms of racing heart, heart jumps, chest pain, chronic fatigue, and sleep disturbance. The latter remains worse than ever as I wake shakingand feeling foul. I've been back with Dr P since last Nov'. I'm on, natural thyroid, adrenal, and seretone. I saw an endo last year - privatley. Did synacthen test and told all was well so the idea of seeing the same again doesn't thrill me as feel it's a waste of time. My thyroid tests also are apparently fine!

I agree with one of your bloggers that if UHS think there is something in saliva testing then there must be a reason for them bothering in the first place so how do we find out why some places think there is merit in saliva testing and yet others don't.?There has to be some consensus on this. Embarassing Bodies carried out a saliva test on a group of people and a chef came up as the one needing to take note. Have tried make contact with programme makes to no avail.

Would love to hear your thougths and NBob, know you have a full time job but would appreciate any ideas on this.

Thanks

Samfalulu

[NBob]

Hi Samfalulu,

When I wrote that the salivary adrenal test is free I really should have written that the test is free to a NHS patient.

I ma going to stray in to territory I don't know about, so if other forum members know any better I welcome their input.

So far as I understand the system (!) NHS services are free to the patient at the point of use. Theoretically we pay in advance by National Insurance. However, the GPs have to pay for the services they commission via the new Clinical Commissioning Groups. I understand that any tests a GP orders comes out of the surgery's budget allocated by the CCG. So a salivary adrenal test would have to be paid for out of the surgeries budget.

When I spoke to the UHS lab, they told me what I put in the blog post. So if the test has to be ordered via the lab, then the GP should get the test ordered via the lab. It seems to me that your GP (and her lab for that matter) has not kept her professional knowledge and skills up to date. It also seems to me that your GP is wary of the test and is trying to fob you off. This could be a case of negative defensive medicine, which cold be negligent.You cite other instances of salivary cortisol testing.

Your GP should be aware of salivary adrenal tests and know how to interpret the test. In any case, the test is not hard to interpret. There will be a figure with a reference range. If the figure is low (and taking other factors in to account) it is likely that you have adrenal insufficiency. The good thing about this test is that is considers the circadian rhythms of adrenal secretion. (cortisol is high in the morning and low in the evening) so gives the clinician a better idea of your cortisol levels at various times of day.

Referral to an Endo is likely to result in the Endo carrying out a Synacthen test which is great to detect Addison's disease (near adrenal collapse) but is no use to detect adrenal insufficiency. I personally would avoid this route.

If your GP was my GP I would insist (without being aggressive) that she instructs the lab (who is not your doctor and should have no say in your investigation or treatment) to send off for a salivary test. Your GP has to agree with you - not the lab - what test you have.

[samfalulu]

Thanks Nbob. It seems that we have had two different responses from UHS bio dept. I was told by the person in charge that they don't take calls from the public and that she remembered the call from my doctor and duly told her that the request would have to come from her lab.

As I mentioned I did say that I had seen an endo privately who took two calls during the time I was with him. I took with me all tests, saliva and thyroid urinary of which there was no comment. I even had Dr P's book with me to show the point of reference of the tests.The endo picked up the book and read the cover and said Dr P, I've never heard of him that's how famous he is. In regard to my Dr's response to my saliva test she just said that it wasn't a recognised procedure hence my need to pursue those agencies such as UHS who carry out this sort of thing. I am going to make an appointment to see her Monday so will be back with outcome!

Thanks again

Samfalulu

[NBob in reply to samfalulu]

There seems to be a misconception that doctors are keen to spread that certain tests are "not recognised" or even "the NHS does not recognise the test".

So far as I am aware, the NHS does not "recognise" any test at all. It is for a doctor to order any test that is in the interest of the patient.

I think that doctors try to confuse tests, procedures and medical devices that have been recommended by the National Institute for Health and Clinical Excellence with "recognised".

The NHS Constitution says "you have the right drugs and treatments that have been recommended by NICE for use in the NHS, if your doctor says they are clinically appropriate for you". This doesn't and shouldn't limit drugs and treatments to those NICE recommend.

Good Medical Practice at paragraph 15 b states that doctors must "promptly provide or arrange suitable advice, investigations or treatment where necessary". Again this isn't restrictive.

Paragraph 57 states "The investigations or treatment you (the doctor) provide or arrange must be based on the assessment you and your patient make of their needs and priorities, and on your clinical judgement about the likely effectiveness of the treatment options".

NOTE "you AND your patient".

Finally para. 68 of GM states "You must be honest and trustworthy in all your communication with patients and colleagues".

By saying such misleading statements doctors are not complying with GMP.

GOOD LUCK