Re: Advice please on Saliva test results

[Guest guest]

Hi ,

No... not Cushings, which is too much cortisol but have a look at s

disease, which is not enough cortisol. With these low results I'd be looking

at getting a short synathcen test from the doctor which would confirm whether

it is addisons or not. (hopefully not). You would need to do this before

taking anything at all to boost or support the adrenals.

Stuff which does support the adrenals is B vits (as in nutri adrenal extra)

Zinc and vitamin C.

Failling that, there is Hydrocortisone or a once a day tablet of prednisolone

which increases HC overall..... However, the NAX does it for many of us.....

The thyroid results will be interesting..... would be good to see if there is a

reason for the low adfrenals and poor thyroid would cause low adrenals......

x

>

> Hi All,

>

> I have received my daughter's saliva test results this morning - I presume

from these results that she doesn't have Cushing's, but does have adrenal

exhaustion.

[Guest guest]

........but does have adrenal exhaustion.Not surprising as she does have language difficulties and other various issues,was bullied at school and really struggled at school. I am home educating hernow, so the stresses are vastly reduced. I am still waiting for the full thyroidtest results and the vitamin and mineral tests.

Hello ,

Yes, I'm afraid that does look like adrenal exhaustion. I agree with ; with results like that and in particular the symptoms your daughter presents, I would ask the doctor to initiate a short synacthen test for her. I am not familiar if in children the cortisol levels would/should be very different from or lower than adults', but even if, I do not think that the levels throughout the day should be that low.

If your doctor agrees and makes an appointment for an SST, please read the NHS guidelines from the following link to familiarize yourself with the procedure.

http://dialspace.dial.pipex.com/town/estate/aquc35/book/Bible2010v1b.pdf scroll down to page 48

Also when you are given an appointment, please insist that this test is scheduled for 9 am, not later in the day. Do not accept a later appointment, as this might give spurious results.

Please let us know what your doctor says.

Best wishes,

[Guest guest]

Hi ,

Thankyou - I feel more confident now about asking the GP for this test - no

wonder she has no energy or stamina.

She is already on an good B vitamin supplement, vit c and zinc and has been for

over a year.

I hope that the thyroid results will be in next week.

With these low results I'd be looking at getting a short synathcen test from the

doctor which would confirm whether it is addisons or not. (hopefully not).

x

[Guest guest]

Hello ,

Thankyou very much for this. I would have thought that these are very low levels

too - I think that I will be able to find out.

Looking at the test itself, I can see the GP will propably want this done at the

hospital in the children's ward. I will try & find out about the results first

before approaching the GP to hopefully give me nore ammunition!

I will let you know!

x

Yes, I'm afraid that does look like adrenal exhaustion. I agree with

> ; with results like that and in particular the symptoms your

> daughter presents, I would ask the doctor to initiate a short synacthen

> test for her. I am not familiar if in children the cortisol levels

> would/should be very different from or lower than adults', but even

> if, I do not think that the levels throughout the day should be that

> low.

[Guest guest]

Hi

I'm just reading back on your posts about your daughter but I'm not sure who old

she is.

I would strongly advise you to have tests through the NHS before taking any

action yourself. My daughter is older but the GP isn't happy we went about

things ourselves and now she is having to come off Hydrocortisone so she can

have the NHS tests done. Our private tests just won't do as far as the endo is

concerned. And I would say she isn't been treated very well by the GP now. Don't

let them tell you it is Chronic Fatigue Syndrome either as you can never get

away from it once it is on you medical record and any illness is put down to

CFS.

I know your GP said previous tests were ok but an endo explained to my daughter

that sometimes it takes time for the true picture of the illness to be found.

Ask Sheila for her list of doctors and ask for your daughter to be referred to

one of these.

I am for myself in the process of doing salivary test with the NHS. I did this

last summer but they have managed to lose the them, either the results or the

actual specimens. I live in the North west so don't know if you would like the

name of the endo I am seeing (he's not on Sheila list) but I am not sure how far

I am going to get with him. He does listen and has looked at my private test

against the NHS blood tests and agreed from my private tests I do appear to be

adrenal insufficient.

Judy

>

> Hi All,

>

> I have received my daughter's saliva test results this morning - I presume

from these results that she doesn't have Cushing's, but does have adrenal

exhaustion.

[Guest guest]

Hi , your daughters very low cortisol and very low DHEA results warrant

you asking her GP, as a matter of urgency, to refer her to the hospital to

test her ACTH level to check for damage to her pituitary or adrenal

glands http://www.labtestsonline.org/understanding/analytes/acth/test.html

Her

early morning cortisol level should be the highest of the day giving her a

strong start and enabling her to meet the demands of the day. A healthy person’s

output of cortisol always follows the same curve, which can be plotted on a

graph. It drops throughout the day until it falls to its lowest level by 11

p.m. or midnight, thus enabling her to sleep restfully throughout the night.

Whenever the patient’s curve departs from the normal - there is a

problem.

High

night time cortisol means that the patient is finding it difficult to relax from

the stress of the day and will have trouble going to sleep. This results in

reduced REM sleep, a kind of sleep that is neither restful nor restorative, and

which can produce depression and reduced energy levels the next day.

Another

sufferer will have normal cortisol output in the afternoon and evening, but

will have too high and too sudden a release of cortisol in the early morning.

This will result in early morning wakening at around 5 or 6 a.m, or even 4 a.m.

and an inability to go back to sleep.

Yet

another sufferer will have high cortisol throughout the day.

Initially,

DHEA levels may also be high in order to provide some compensation for

this, but if stress becomes chronic the adrenals can no longer maintain

the production of extra DHEA with the result that there will be an elevated

Cortisol-to-DHEA ratio.

This

'divergence', as it is called, has been seen in many patients’ tests

since the ASI test was first introduced, and it signifies an initial stage of

adrenal exhaustion. It can have potentially very harmful effects on health

including diminished immune function, reduced REM sleep, diminished skin

regeneration and a catabolic state where tissue breakdown exceeds tissue repair

and building, leading to muscle wasting, weight loss and bone loss

(osteoporosis).

It's

not hard to see that this state is not far away from the start of even more

significant adrenal fatigue.

Patients

with this more significant adrenal fatigue will often have both a very low DHEA and low

cortisol output throughout the day. Instead of having an 8 a.m.

cortisol level of between 13 and 23, which is what gives a normal person get up

and go to start the day, their morning level can be as low as 4, or even 2, and

stays almost as low throughout the 24-hour period.

Someone

with this low cortisol output will be in real trouble and this is why I urge

you to get this referral urgently. Your daughter sounds as if she is hanging on

by her fingernails, needing to push herself all day long and having no energy

whatsoever left for anything.

Luv -

Sheila

I have received my daughter's saliva test results this morning - I presume from

these results that she doesn't have Cushing's, but does have adrenal

exhaustion. Not surprising as she does have language difficulties and other

various issues, was bullied at school and really struggled at school. I am home

educating her now, so the stresses are vastly reduced. I am still waiting for

the full thyroid test results and the vitamin and mineral tests.

Cortisol Levels

Sample 1 6.9 Outside range - low (12-22)

Sample 2 0.9 Outside range - low (5.0-9.0)

Sample 3 0.1 Outside range - low (3.0-7.0)

Sample 4 0.1 Outside range - low (1.0-3.0)

Total Daily Cortisol 8.0 (Range 21-41)

DHEA Levels

Sample 2 (am) 0.10 Outside range - low (0.40-1.47)

Sample 3 (PM) 0.10 Outside range - low (0.40-1.47)

DHEA: Cortisol Ratio 1.25 Outside range - low (2.0-6.0)

The report does say that low DHEA is a normal finding in children below the age

of 14

I would be greatful for any advice of what I need to do improve these cortisol

levels.

[Guest guest]

HI Judy,

> I know your GP said previous tests were ok but an endo explained to my

daughter that sometimes it takes time for the true picture of the illness to be

found.

Thankyou so much for replying. My daughter is 12.5years.

I will definitely be seeing a GP tomorrow. I do like what your endo said about

true pictures of the illness taking time to be found and I will use this

tomorrow in case the GP refuses, I will also state the Government's Every Child

Matters Green Paper - the first statement being that every child should have the

support they need to be healthy.

I will wait and see what happens first, then I might ask you for the endo's

name, though I expect that she will be referred to someone at Birmingham's

Children's Hospital as that is where all the referrals go from this part of the

world.

BWs

x

[Guest guest]

Hi Sheila,

Thankyou so much for this. I can't tell you how worried I am. I will be seeing a

GP tomorrow.

You are quite right that my daughter is hanging on by a thread, trying to get

this across to the GP's has been impossible so far, they just take one look at

her, say that she is out of condition and that she should exercise more. I try

to tell them that she can't exercise, that she has a very low tolerance to

exercise, but, it has so far fallen on deaf ears.

Maybe now we are going to get somewhere, I am so grateful for the advice from

you and this list.

Your explanation goes somwhere in helping me to understand what has being going

on. Since taking her out of school, I have been expecting her to gradually get

better. Instead, she has been gradually getting worse. We are only able to do

one thing a day as she is gets too exhausted doing more. She has to spend alot

of time sitting down just watching TV, she stays in bed for hours, but, is

always tired when she wakes up. The slightest thing from the norm can lead to a

screaming session or her just being unable to cope. It is so hard, she wants to

do more and tries so hard.

Anyway, I am going to think positive and see this as a turning point.

x

[Guest guest]

You are quite right that my daughter is hanging on by a thread, trying to getthis across to the GP's has been impossible so far, they just take one look ather, say that she is out of condition and that she should exercise more. I tryto tell them that she can't exercise, that she has a very low tolerance toexercise, but, it has so far fallen on deaf ears.Maybe now we are going to get somewhere, I am so grateful for the advice fromyou and this list.

Hello ,

All the member's best wishes will be with you tomorrow when you go to see your GP, and I hope that he will take a good look at the salivary adrenal result and take them seriously, but many doctors ignore or rubbish those results because they are not "NHS approved" and give the patient the brush-off... please be prepared for that and do not allow this to happen. If your GP tries to rubbish those results, please, for your daughters sake, be prepared to make a big fuss there and then and insist on a referral to a suitable endo of YOUR choice... if you have not got some good endo lined up, then tell your GP you will advise him of your chosen endo's name shortly, but insist that your daughter should be referred and meanwhile he should get on with the task of dictating the referral letter PDQ ....well, I am sure you can phrase that better than I ;o)

May I just give you some `ammunition' in case the GP is rubbishing those Genova results – please point out to him that:

1) Genova Diagnostics Europe is a fully CPA accredited laboratory No: 3054 (this is the UK laboratory accreditation body part of UKAS), and therefore the same accreditation as the NHS.

2) All kits used for these measurements are CE marked. This means that the MHRA (Medicines and Healthcare products Regulatory Agency) have determined that the sensitivity, specificity, validity and performance of these assays meet the appropriate criteria.

Hopefully all will go smoothly and your GP will take those results seriously and initiate the necessary tests or refer your daughter straight away. It is very sad that so far nobody has taken your concerns seriously. It is bad enough when we adults are dismissed in that way by our doctors, but it makes me mad when a doctor gives a concerned mother the brush-off and tells her the child is just `out of condition'....- do they really think that if a child were just `lazing about' a mother would not have noticed that and would go to the extreme of taking her child out of the schooling system to home school it? Do they think we are all idiots?

Anyway – fingers crossed for tomorrow, and please let us all know how it went.

Good luck,

[Guest guest]

Dear All, Sheila and ,

First of all thnk you for your lovely message and the information that

you gave me - I printed off the info about Genova and gave it to the GP.

You will be pleased to hear that the GP took one look at the results,

immediately said that there could be several reasons for this and that she would

refer my daughter to the paediatrician at the local hospital who specialises in

endocrinology. He has recently retired from some clinics, so if he has stopped,

then she expects that she will be referred to a visiting specialist from

Birmingham Children's Hospital.

I am so relieved, she did not question the results, only that she felt that they

would have to do their own tests.

Clearly all the good wishes from the members of this forum helped this morning.

Thank you.

I will let you know what happens.

x

If your GP tries to rubbish those results, please,

> for your daughters sake, be prepared to make a big fuss there and then

> and insist on a referral to a suitable endo of YOUR choice... if you

> have not got some good endo lined up, then tell your GP you will advise

> him of your chosen endo's name shortly, but insist that your

> daughter should be referred and meanwhile he should get on with the task

> of dictating the referral letter PDQ ....well, I am sure you can phrase

> that better than I ;o)

>

>

[Guest guest]

,

Long way to go yet but over the first hurdle.. good news.... brilliant when

something actually goes as planned. Thank you for letting us all know.

Good news always makes me want to cry, specially when someone is so obviously

ill.....

xx

> You will be pleased to hear that the GP took one look at the results,

immediately said that there could be several reasons for this and that she would

refer my daughter to the paediatrician at the local hospital who specialises in

endocrinology.

[Guest guest]

> You will be pleased to hear that the GP took one look at the results, immediately said that there could be several reasons for this and that she would refer my daughter to the paediatrician at the local hospital who specialises in endocrinology. He has recently retired from some clinics, so if he has stopped, then she expects that she will be referred to a visiting specialist from Birmingham Children's Hospital. > I am so relieved, she did not question the results, only that she felt that they would have to do their own tests.

Phew - that's a mighty relief !! Thanks for letting us know, I had been wondering earlier today how you'd get on.

Well, that's the first hurdle taken. It's fair enough that they will want to do their own tests, and I would imagine that they will order an ACTH stimulation test and check the pituitary function too, so should get to the bottom of it all - Please keep us all posted.

love,

[Guest guest]

Thankyou and . It is such a relief to hear that others consider

my daughter so ill as well. At times, it has seemed as though no-one was

listening. It is also a relief to shed a tear or two knowing that at long last

we are getting somewhere.

Apparently the 'old' paediatrician specialising in endocrinology has retired and

the hospital has recently appointed a new person - I shall see this as a

positive thing at the moment and see what happens when we get there! I hope that

it isn't too long.

>>

> Well, that's the first hurdle taken. It's fair enough that they will

> want to do their own tests, and I would imagine that they will order an

> ACTH stimulation test and check the pituitary function too, so should

> get to the bottom of it all - Please keep us all posted.

>

+++++++++++++Moderated to remove old messages ****************

>

[Guest guest]

> It is such a relief to hear that others consider my daughter so ill as well. At times, it has seemed as though no-one was listening. It is also a relief to shed a tear or two knowing that at long last we are getting somewhere.

Hang in there, , and fingers and toes firmly crossed that the new pediatrician endo will be pulling out all the stops ..... new man making his mark an' all

In your initial mail you said you are still waiting for the results of the thyroid test and minerals & vitamins.... have they come through yet? ... if and when they do, please ask for copies of the results including the ref ranges (never accept a verdict of "all is normal") - and then let us know what the figures are.

Love,

[Guest guest]

Hi ,

Thank you for this. I have found out that the referral letter is at the

hospital, that the endo is a woman and that I should know next week when my

daughter will be seen. Yes, let's hope that she wants to make her mark.

My daughter seems to be getting worse by the day - perhaps it is my imagination

now that I know that there is something wrong. She is now spending all day in

sunglasses and switching off lights as her head hurts so much.

I haven't received the thyroid test results yet - will post them when I do.

x

> In your initial mail you said you are still waiting for the results of

> the thyroid test and minerals & vitamins.... have they come through yet?

[Guest guest]

My daughter seems to be getting worse by the day - perhaps it is my imaginationnow that I know that there is something wrong. She is now spending all day insunglasses and switching off lights as her head hurts so much.

Hi ,

Hopefully will be down to you knowing that something is wrong, but it is still best to be vigilant. Bad headaches and light sensitivity can be part of hypoadrenia as something like 's is not called "the great pretender" without reason – it can mimic all kinds of conditions. But if this pain and sensitivity were something new and in particular if your daughter has experienced flu-like symptoms recently and has stiffness of the neck or a rash, then you should take her to the GP to have it checked out.

Fingers crossed that the appointment with the new endo will happen quickly, but may I just give you a few tips for the meantime....

Because your daughter is now suspected to have adrenal insufficiency, it is doubly important to ensure that she is well hydrated at all times, i.e. drinks those recommended 8 glasses of plain water during the course of the day. The most dangerous situation for someone with – for instance - 's disease is an electrolyte imbalance (which can be caused by dehydration), which means sodium would be going down, and that would drive potassium up, which is not a good combination. Drinking sufficient water is an easy precaution even if adrenal insufficiency were not confirmed; being well hydrated can only help in any situation.

If at any time you were really, really, worried about your daughter (collapse or anything else worrying), please do not hesitate – take her straight to A & E and tell them that adrenal insufficiency is suspected and that you awaiting an appointment with Dr. XYZ. They would then put her straight onto a drip and do the necessary tests without wasting time.

With very best wishes,

[Guest guest]

Hi ,

Thank you for this - sorry to take so long to reply. I have been watching my

daughter very carefully. The headaches have been around for around 3 months now,

they just seem to get worse. The light sensitvity was bad when the snow was on

the ground - we had to have the curtains shut all day then!

Thank you for advising me on what to do & say should my daughter suddenly become

worse that is a great help - though frightening.

Do you mind if I ask whether you know if my daughter's stiffness is related to

this. She often wakes up stiff. On Saturday she was at stagecoach for 3 hours -

she wasn't sure if she could manage this. By the evening the stiffness had

started and the following morning and all day she was stiff. She is often much

more tired when she is stiff like this. I really would like to know what is

going on here. I took her to A & E a few years ago when her fingers swelled and

were very stiff - they kept her in took some blood tests- then said that they

couldn't find anything!

Getting her to drink is a real problem - she says that she does not feel

thirsty. Sometimes I have to keep reminding her to have sips at least. She does

have sea salt - I am surprised that it does not make her thirsty.

Best wishes,

>

>

> My daughter seems to be getting worse by the day - perhaps it is my

> imagination

> now that I know that there is something wrong. She is now spending all

> day in

> sunglasses and switching off lights as her head hurts so much.

>

>

>

>

>

> Hi ,

>

> Hopefully will be down to you knowing that something is wrong, but it is

> still best to be vigilant. Bad headaches and light sensitivity can be

> part of hypoadrenia as something like 's is not called

> " the great pretender " without reason – it can mimic all

> kinds of conditions. But if this pain and sensitivity were something new

> and in particular if your daughter has experienced flu-like symptoms

> recently and has stiffness of the neck or a rash, then you should take

> her to the GP to have it checked out.

>

> Fingers crossed that the appointment with the new endo will happen

> quickly, but may I just give you a few tips for the meantime....

>

> Because your daughter is now suspected to have adrenal insufficiency, it

> is doubly important to ensure that she is well hydrated at all times,

> i.e. drinks those recommended 8 glasses of plain water during the course

> of the day. The most dangerous situation for someone with – for

> instance - 's disease is an electrolyte imbalance (which can

> be caused by dehydration), which means sodium would be going down, and

> that would drive potassium up, which is not a good combination.

> Drinking sufficient water is an easy precaution even if adrenal

> insufficiency were not confirmed; being well hydrated can only help in

> any situation.

>

> If at any time you were really, really, worried about your daughter

> (collapse or anything else worrying), please do not hesitate – take

> her straight to A & E and tell them that adrenal insufficiency is

> suspected and that you awaiting an appointment with Dr. XYZ. They would

> then put her straight onto a drip and do the necessary tests without

> wasting time.

>

> With very best wishes,

>

>

>

[Guest guest]

Hello ,

It is difficult to judge anything without ever having seen your daughter. The reason I mentioned stiffness of the neck in particular was because this in conjunction with light sensitivity and flu symptoms and a rash might have been symptoms for meningitis, but since your daughter has been like that for 3 months now this is unlikely.

I did not mean to frighten you with all this information. There are so many possibilities of what might be going on with your daughter, it would be impossible to list everything or test for everything, but the salivary adrenal test is a very sensitive test and since that has come up with some pretty bad figures you need to have that investigated further, as adrenal insufficiency is a very serious condition and would need treatment if confirmed.

You can, however, draw some broad conclusions from your daughter's physical features.... if she were very slim and had trouble putting on or keeping on any weight, that – particularly in view of her adrenal profile – would make adrenal insufficiency more likely. – If, however, she were over-weight and gaining weight easily, that would point more towards an underactive thyroid which often goes hand in hand with low adrenal function, but there is a very big difference between adrenal insufficiency and low adrenal function.

The overall stiffness points more in the direction of low thyroid....

In any case encourage her to drink more - plain water in particular, but perhaps it could be made more palatable by adding a bit of fruit juice or squash to the water. If she does not drink enough, her kidneys do not get stimulated and that means that toxins are not readily flushed out of the system.... toxins in the body would also backfire and make her feel unwell.

It is very likely that the endo will order a series of blood tests.... pay particular attention to your daughters electrolyte figures – that is Natrium or Sodium (Na) and Kalium (K = potassium). The figure for Na should ideally be in the middle of the ref range (above 140 at least) and potassium should be between 4 and 5 – ideally 4.5. It would be re-assuring if your daughter had healthy electrolyte figures.

I hope you get the thyroid results soon - that should tell us a bit more....- any date for the appointment with the endo yet?

Best wishes,