Here is version of a letter asking for a salivary cortisol test free on the NHS. You can copy paste and adjust this letter to suit your own cicumstances and or preferences.
Dear Dr...
A lot of my signs and symptoms are also those of hypoadrenia or adrenal insufficiency. (You may lsit them here, if you want).
The Information in the British National Formulary, Patient Information Leaflets and Drugs.com for Levothyroxine says that prescribing Levothyroxine may cause adrenal crisis in those with adrenal insufficiency.Further, there is an association between hypothyhroidism and adrenal insufficiency. Many experts propose treating any adrenal insufficiency prior to Thyroid Replacement Therapy to avoid adrenal crisis.
A long or short synacthen test is not suitable for assessing hypoadrenia or adrenal insufficiency that is not severe enough to be Addisons disease but a salivary cortisol test is excellent at detecting non-Addison's insufficent levels of cortisol.
The Specialist Biochemistry department at University Hospital Southampton carry out salivary cortisol testing as a NHS service. This service will only assess cortisol (not DHEA) but it is a good starting point. This is a NHS service and it is free for NHS patients. I Should be grateful if you would arrange for the Specialist Biochemistry department at University Hospital Southampton to carry out a salivary adrenal test. Please call 02380 798717 for further details.
It may also be useful to carry out a serum DHEA test to further assess the function of my hypothalamic-pituitary-adrenal axis.
Yrs Sincerely
.....
Written by
NBob
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Wow. Thanks. I'm on adrenal support, as suggested by Dr P. When I feel it is stable, I will ask my GP if I can get that test to see what difference it is making as I already have the Genova test from before I started the support.
Brillant! So the Nhs realise the is some value in saliva tests... Next time anyone shows a Genova test to their doctor and it is dismissed, ask immediately for an Nhs test.
In theory, there is no need to do this as Genova is is accredited by Clinical Pathology Accreditation (CPA) UK Ltd, who are part of the UK Accreditation Service (UKAS).
From the Genova website
Although this accreditation is voluntary, enrolling demonstrates that the laboratory has been assessed against the accepted standards. CPA undertakes regular monitoring and assessment of the service against internationally recognised standards.
Genova is regulated by CQC to provide care at Genova Diagnostics Europe
Our last check showed "This service was meeting all CQC national standards"
There is no reason for a GP or Endo to dismiss any Genova lab test. (Although they do). We should use Good Medical Practice and state, they are CPA accredited and CQC registered so this represents the best available evidence. You have a duty to act on it. Please act on it or...complaint is imminent.
Has anyone had the test done by Southampton? Or are there strict criteria as to which illnesses/ conditions are allowed to use the service? Knowing how more and more lab tests are restricted, like T3, it wouldn't suprise me if this was only used for a tiny handful of non-related conditions!
Thank you for the letter, I will use some of it. Can you pay to have the test done privately at the UHS? Are you up for writing a similar letter for all the other tests people with auto-immune diseases and thyroid problems should have (I have Hashimoto's and hypo and think I have sjogren's syndrome and adrenal insufficiency). Thanks for your help
Dont know about paying UHS for tests. Best to call them and let us know.
I can have a go at letters.
Some riders first. I am not medically qualified. I only know some stuff about thyroid and adrenal issues. I am reading up on Vit B12 issues and Coeliac issues. I haven't got round to sjogrens syndrome yet. I work full time in a demanding job so my priorties are variable to say the least.
I hope that anything I do produce is taken up by members and improved. We can all help each other.
There is a format emerging though, so some others may be able to produce letters them selves
Here is the format for the skeleton letter, to be filled out with proper sentences and conciliatory words
I have ............. symptoms.
I believe these point to X disease
the best up to date evidence points to these tests/treatment being of use (list the evidence)
request the tests/treatment.
optional
you have a duty under GMP to
>provide effective treatments based on the best available evidence
>keep your professional knowledge and skills up to date.
>be familiar with guidelines and developments that affect your work
Further option
Failure to provide these tests may result in a complaint.
Hmm, I can change my own letter based on my own advice
I called the lab and they told me all that needs to happen is for the GP to call them to order the test. They will send out the kit to the patient who fills the saliva containers at the right times and sends them back to Southampton. They run the tests and send the results to your GP.
The big problem is convincing the GP that the test is useful, accurate and reliable. I would think that a NHS lab providing the test should be sufficient. if not, there is plenty of evidence on the net to support salivary testing.
As we know GPs are creatures of habit and may not be amenable to change from a first request/letter. I suspect that a follow up letter may be necessary, reminding the GP of his/her duties under Good Medical Practice (GMP) and the NHS Constitution i.e.
From GMP
Make the care of your patient your first concern.
Provide a good standard of practice and care.
Keep your professional knowledge and skills up to date.
Work in partnership with patients.
Listen to, and respond to, their concerns and preferences.
You must keep your professional knowledge and skills up to date.
You must be familiar with guidelines and developments that affect your work
promptly provide or arrange suitable advice, investigations or treatment where necessary
provide effective treatments based on the best available evidence
You must listen to patients, take account of their views, and respond honestly to their questions
You must support patients in caring for themselves to empower them to improve and maintain their health.
The investigations or treatment you 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.
You must not unfairly discriminate against patients or colleagues by allowing your personal views* to affect your professional relationships or the treatment you provide or arrange
You must treat patients as individuals and respect their dignity and privacy
From the Constitution
You have the right to be involved in discussions and decisions about your health
and care, including your end of life care, and to be given information to enable you to do this.
The NHS commits to work in partnership with you, your family, carers and representatives.
and a warning that failure to carry out such a test in your circumstances, against your preferences and without supporting evidence that salivary testing is not viable is both negative defensive medicine which is possibly negligent and also contrary to both GMP and the NHS Constitution. Failure to carry out the test without a reasonable explanation may result in a complaint.
Thats interesting to know i know when i did mine through Genova and the Gp would not even discuss it, next time i need one i know what to say to them thank you for this xx
Re My request to view the NBob info re- saliva test. First of all thanks for such an efficient web site.
I wrote to my GP requesting she contact the University Hospital Southampton biochemistry department. I said in the letter that they do this test NHS and is free and asked could we also do a serum DHEA test to assess hypothalmic- pituatry -adrenal axis. The response was as follows:
'We contacted the University Hospital Southampton biochemistry department and they do indeed do a salivary cortisol but apparently 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 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 was so upbeat when I read NBob's info re the above as some time ago I did an adrenal test and my adrenal reading was that my adrenals were extremely fatigued - tests done by Genova. I showed this to my doctor including a 24 hr urinary test done under Dr P. that showed slightly hypo but mainly adrenal. None of these tests mean anything to NHS and can understand to some degree as Dr's are under the rules and regs of their own regulatory body. I went to see an Endo just over a year ago and showed him the same info and he was so dismissive of the findings. He sent me for a short synacthen test and that was said to be ok.
I agree with whoever said on this site that Southampton must recognise the value of such tests. Also, some time ago on the programme Embarrasing Bodies, they did saliva testing on a group of people and found a chef to have some issues to be monitored. I've tried unsuccessfully to get in touch with the programme makers to get some sense out of what appears to be the mystery of saliva testing!
I was by the way told I had ME 2005, (private) and years after start of symptoms, was also told I probably had had this from a considerable time ago. After being bedridden and symptoms of what I can only describe as being like 'Carrie' and that's not a joke, it was as scary as hell I got some energy back and some CBT help, I started to get about. I then did saliva then Dr P. Then got back to playing tennis aND team tennis - brilliant. The past year bad, bad relapse; Chronic fatigue, being awake sometimes til 5am, or keep waking up shaking and feeling foul. Back with Dr P, since last November and on adrenal, thryoid and Seretone.
Would love your thoughts on Adrenal testing especially NBob,if you get the time.
Thanks again to this group and thank goodness for it.
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DHEA (& Cortisol)
