Re: Synacthen test result - Advice please?

[Guest guest]

Hello ,

***.....saw the NHS endo at my local hospital who said I needed the Short Synacthentest but advised that I could take my last hydrocortisone at 3.30pm the daybefore the this test. I took 2 NAX and 5 NA the day before the test too. Theresult:Basal 386nmol/L, 30 mins 226, 60 mins 326 (the Health care asst couldnt get myblood on the 60 min test - I nearly blacked out and had to go to down toPhelbotomy so this probably took another 15 mins). .... and herein lies the problem. I am aware that it says in the endocrine handbook that it is ok to stop HC at midday the day before the test, but frankly, I fail to see how this could provide a valid result (at least not with regards to adrenal insufficiency). Please, if anyone knows differently, I would be grateful if they would enlighten me, as I have been wondering for some time how this is supposed to work. Since you had taken not only HC before the test, , but NAX and NA as well, IMHO that would further invalidate the test result.

A test result like yours does not make any sense whatsoever – at least not to me. Your basal cortisol shows a level of 386, which undoubtedly had been boosted by you taking HC and adrenal support until the day before the test, and subsequent figures slid backwards after the injection of ACTH (they are expected to go up after ACTH injection, not down) .... this is not what I would expect to happen if your system had been clear of steroids before starting the test. I honestly am at a loss as to why your doctor made you go through that test. What meaningful result was he hoping to get ?

***The endos letter says that Ido have some adrenal function but clearly not a normal response. He goes on tosay that it is difficult to know whether this is related to the steroids that Ihave been taking or whether I started off with a problem with the adrenalglands.

Did he now?!.... I wonder how he worked that one out ! It is not "difficult" to know whether this absurd result is related to the steroids, it clearly *is* related to the steroids that you had been taking. I fail to see how anyone can draw a meaningful conclusion from this test result – under the circumstances it was a total waste of your time and NHS money.

***The endo says he wants me to stop NAX and tail down the Hydrocortisone and thenrepeat the test - aim to return adrenal function. He hasnt made anyrecommendation for any prescriptions?If you both want to get a meaningful result from a Synacthen test, then I guess this is what you will have to do.... – but if it proves impossible to wean you off all HC and other adrenal suppport, then your endo would have to switch you from HC to Dexamethasone, since this is the only glucocorticoid that will not influence a synacthen test result. I do not know how long you would have to be off HC and on Dexamethasone, but no doubt that can be found out.

If you can be weaned off all HC and NAX and NA, then in order to get a true result, in my view you would need to be off it all for at least 6 weeks – I believe that is how long it takes for all traces of supplemented glucocorticoid to leave the system and for the adrenals to resume whatever function they are capable of providing. Another question to consider is whether or not your system would be able to cope with any exogenous thyroid hormone if your adrenals were unsupported – if you do suffer from adrenal insufficiency and your adrenals do not function sufficiently without extra HC, then you will have a problem. Thyroid hormone needs cortisol to be utilized by the body – taking thyroid hormone without sufficient cortisol can lead to an adrenal crash. So please be extra careful – you do need an endo who knows what he is doing .... can you trust your endo?

Sorry, but I can't answer your other questions about the sex hormones – I have not enough knowledge about them.

With best wishes,

[Guest guest]

MODERATED TO REMOVE MOST OF PREVIOUS MESSAGE ALREADY READ. PLEASE ENSURE YOU

HAVE DONE THIS BEFORE CLICKING SEND AND LEAVE JUST A SMALL PORTION OF WHAT YOU

ARE RESPONDING TO. LUV - SHEILA

___________________________________________________________

Hi ,

Thank you for your comment. I complied with what the Endo asked so I feel

frustrated that although my result is " not normal " that he hasnt suggested what

my treatment plan is! I have written to him today and taken it by hand to the

hospital and copied PALS into it as I havelooked on the CKS website that says if

the result is if the result is above 400 ( mine wasnt) then s couldnt be

ruled out! I have asked him for his comments and if he has experience in

treating someone in my situation i.e. that is already taking hydrocortisone and

being asked to " tail off " when my results are so bad. And indeed even minor

illness makes me really ill when compare to others! I told him all this.

I feel like I wasted my time having this test if he isnt going to take note of

the result!

Hes waiting on the DHEA result but says that this will probably be affected by

me taking NAX?

Dont know what to think?

> ***.....saw the NHS endo at my local hospital who said I needed the

> Short Synacthen

> test but advised that I could take my last hydrocortisone at 3.30pm the

> day

> before the this test. I took 2 NAX and 5 NA the day before the test too.

> The

> result:

> Basal 386nmol/L, 30 mins 226, 60 mins 326 (the Health care asst couldnt

> get my

> blood on the 60 min test - I nearly blacked out and had to go to down to

> Phelbotomy so this probably took another 15 mins).

> .... and herein lies the problem.

[Guest guest]

Oops sorry -forgot. What do you think of the results Sheila?

>

> MODERATED TO REMOVE MOST OF PREVIOUS MESSAGE ALREADY READ. PLEASE ENSURE YOU

HAVE DONE THIS BEFORE CLICKING SEND AND LEAVE JUST A SMALL PORTION OF WHAT YOU

ARE RESPONDING TO. LUV - SHEILA

> ___________________________________________________________

>

> Hi ,

> Thank you for your comment. I complied with what the Endo asked so I feel

frustrated that although my result is " not normal " that he hasnt suggested what

my treatment plan is! I have written to him today and taken it by hand to the

hospital and copied PALS into it as I havelooked on the CKS website that says if

the result is if the result is above 400 ( mine wasnt) then s couldnt be

ruled out! I have asked him for his comments and if he has experience in

treating someone in my situation i.e. that is already taking hydrocortisone and

being asked to " tail off " when my results are so bad. And indeed even minor

illness makes me really ill when compare to others! I told him all this.

>

> I feel like I wasted my time having this test if he isnt going to take note of

the result!

>

> Hes waiting on the DHEA result but says that this will probably be affected by

me taking NAX?

>

>

> Dont know what to think?

>

>

>

>

[Guest guest]

Previous posts

> ***The endo says he wants me to stop NAX and tail down the

> Hydrocortisone and then

> repeat the test - aim to return adrenal function. He hasnt made any

> recommendation for any prescriptions?

> If you both want to get a meaningful result from a Synacthen test, then

> I guess this is what you will have to do.... – but if it proves

> impossible to wean you off all HC and other adrenal suppport, then your

> endo would have to switch you from HC to Dexamethasone, since this is

> the only glucocorticoid that will not influence a synacthen test result.

> I do not know how long you would have to be off HC and on Dexamethasone,

> but no doubt that can be found out.

Very interested in this as my daughter was switched to Dexamethasone from

Prednisolone for 6 days prior to Synacthen test.

Results

Base line - 36 cortisol nmol/L

30 mins after acth injected - 169nmol/L

no test at 60 mins.

This was done under the care of cardiologist (after taking advise from the

biochemist) who referred her on to endocrinologist. The endocrinologist is also

wanting her to ween off her steroid to then redo the synacthen test as he says

any steroid use, even asthma inhalers will effect the result of the test.

She has been instructed in how to do this and given a name and phone number of a

specialist nurse who will advise on any problems and if necessary bring her back

into the clinic.

I have my doubts about this as I feel they are tying to prove she doesn't have

an adrenal problem which would then leave my daughter to be self treating with

steroids if she is still as ill. Of course then they will say its the CFS if she

is still ill not an adrenal problem.

Even so it should be worth asking if you can change to Dexamethasone and have

the synacthen test.

My daughter had already come down in her dose due to the allergy problem she is

having to all medication and spending two weeks in hospital. So now she has to

reduce from 3 mg Prednisolone in 3 months. reducing 1 mg a month. Back to the

clinic end of March.

Judy

[Guest guest]

I think you have

done the right thing in asking the particular doctor in question to give you

some answers and sending a copy to PALS etc. I would ring his secretary to

confirm that the letter has been actually handed to him and because of your ill

health, demand that he responds within 7 working days. Keep us advised about

this and good luck.

Luv - Sheila

Oops sorry -forgot. What do you think of the results Sheila?

>

_,_._,___

[Guest guest]

Judy,

Why are we being treated as though they dont beleive we have a problem?

Interesting what you said about being under a cardiologist - why is that?

I was admitted to hospital in 2006 with suspectedheart problem and after the

treadmill test and after being in for 3 days they said it wasnt heart related

but costochronditis! I had started on Armour and this is how I found out I had

t4/T3 converstion as per Dr P. I still have some problems on T3 and only take

about 35mcg and 40mcg per day. but like today I have to take more Cortef as I

think my T3 is running in overtime!! Dunno why sometimes its ok and sometimes

its not! but I get chest pain when its in overtime! Better to be safe than

sorry with regards to your daughter.

>>

> Very interested in this as my daughter was switched to Dexamethasone from

Prednisolone for 6 days prior to Synacthen test.

> Results

> Base line - 36 cortisol nmol/L

> 30 mins after acth injected - 169nmol/L

> no test at 60 mins.

>

> This was done under the care of cardiologist (after taking advise from the

biochemist) who referred her on to endocrinologist. The endocrinologist is also

wanting her to ween off her steroid to then redo the synacthen test as he says

any steroid use, even asthma inhalers will effect the result of the test.

>

>

[Guest guest]

Thank you Sheila for your advice. I have asked for his written reply within 7

days but I will call his secretary to check he has it!

All this can make you feel very concerned for your own health! I just dont

trust them. I have sent Dr P a fax with copies and have asked him to call me

and let me know what hes thinks I should be doing/taking, because I dont have an

appt with him until 23rd Jan 2011.

Just these last 2 days my T3 is fighting with my Adrenals and seems to be

winning so having to take more Cortef! Probably the stress of it all!

>

> I think you have done the right thing in asking the particular doctor in

> question to give you some answers and sending a copy to PALS etc. I would

> ring his secretary to confirm that the letter has been actually handed to

> him and because of your ill health, demand that he responds within 7 working

> days. Keep us advised about this and good luck.

>

> Luv - Sheila

>

> Oops sorry -forgot. What do you think of the results Sheila?

>

>

> >

>

> _,_._,___

>

[Guest guest]

>

>

> Judy,

>

> Why are we being treated as though they dont beleive we have a problem?

Hi , Its very difficult isn't it. I too had costochondritis which my GP

said was common at our age meaning herself and me. That pain disappeared when I

started T3, interestingly my GP is hypothyroid and take thyroxine only.

My daughter was diagnosed with Post Viral Fatigue 5 Years ago. And although our

GP's were sympathetic none knew how to help. Long story short she saw doctors

privately and was advised to take HC and old Armour. She was quite a bit better

but started to have infections which become chronic and was changed to

prednisolone which we now realise hasn't been addressing the adrenal problem.

eighteen months ago she started to have palpitations and a fast heartbeat so the

GP referred her to Cardiologist who also had in the past run a CFS clinic. AS

she is so ill and housebound it was decided to admit her to be seen by gastro

(chronic diarrhea) and endo consultants at the same time. This took 5 months to

organise and in the end she wasn't admitted but did see the Cardio and was

admitted on to a day ward for gastro procedures.

Before we saw the cardio we had figured out she was taking too much Armour and

reduced the dose and he found nothing wrong with her heart. Nothing was found

gastro either. Cardio did try to help but decided she should see endo after he

had done Synacthen test.

The problem is the endo isn't interested in the private test we have showing

very low adrenal function. So now she has to start again.

I understand the endo when he says she is only 22 and she shouldn't be on

steroid if she doesn't need them. And he did say if the tests show she has a

problem then ofcourse they will treat her. But I have my doubts that they will

find 's so it will be adrenal insufficiency which they won't find.

And then we are back to where we started.

It has become more complicated as she is now reacting to any medication and the

allergies are make her more adrenal insufficient. And once she has trigger the

allergic response she reacts to all her allergies. Vicious circle.

But she does now have a NHS Hypothyroid diagnoses but can't take any thyroid

meds without triggering the allergic response.

Judy

[Guest guest]

Judy,

Thank you for your reply.

I do know how your daughter feels. I was on T4 for about 10 years but was still

unwell. I then started Armour which resulted in very bad chest pains, nausea,

bad stomach and ended up in hospital as they suspected angina. The hospital put

me on the treadmill and I had ECG, blood tests etc. But they didnt find

anything. I worked out it might have something to do with the Armour

(prescribed by Dr S)and went to see Dr P, as Dr S said he didnt know much about

Adrenals. Dr P said he thought I was not converting T4 to T3. So started with

just T3 - still not an easy road and my costocondritis still continues with

35mcg of T3. I have tried to take Armour again but the same happens, rapid

pulse, chest pain, nausea and bad stomach. I take Cortef since seeing Dr P and

NAX.

Im still not well - I dont think there is any easy answer. Has your daughter

seen Dr P?

> >

> >

> >

> >

>>

> Its very difficult isn't it. I too had costochondritis which my GP said was

common at our age meaning herself and me. That pain disappeared when I started

T3, interestingly my GP is hypothyroid and take thyroxine only.

>

> My daughter was diagnosed with Post Viral Fatigue 5 Years ago. And although

our GP's were sympathetic none knew how to help. Long story short she saw

doctors privately and was advised to take HC and old Armour. She was quite a

bit better but started to have infections which become chronic and was changed

to prednisolone which we now realise hasn't been addressing the adrenal problem.

>

>

[Guest guest]

Hi ,

Yes she has seen both Dr P and DR M.Just tricky at the moment with Gp and endo

involvement

Sorry to hear you are still in pain. Good your heart is ok though. I have been

slowly increase my T3 and now take 75mcg spilt into 6 doses throughout the day.

Taken me a while to get to this amount.

Judy