Re: 2nd SST test results in!

[Guest guest]

,

I'm assuming you were asked to stop taking the cortisone for at least 24 hours

before the test?

Also the gpnotebook site says that you should start at more than 170 nmol per

ltr and rise to at least 580, which you failed to do even on cortisone (see

below).

I think I'd be querying the results with him before agreeing to any of his silly

experiments....

Also, are you sure you go hyper with just a little thyroid med or are you

unable to take it because of low adrenal function? There is a warning about

this on the patient information leaflet.

Some symptoms of hyper are, sweating, fast heartrate, heat intolerant as too hot

and weight loss but symptoms of thyroid hormone intolerance are: heart

pounding or fast, feeling dizzy and a bit sick, bloating and diorrhea... (yes,

they are similar)

.

http://www.gpnotebook.co.uk/simplepage.cfm?ID=-1456144342

The synacthen test is used to test adrenal reserve. Synacthen is tetracosactrin,

the first 24 amino acids of ACTH.

Short synacthen test:

* take a basal sample for cortisol

* give 250 microgramme Synacthen i.v. or i.m.

* sample for cortisol are taken at 30 mins and 60 mins

In healthy individuals, the basal plasma cortisol should exceed 170 nmol per

litre and rise to at least 580 nmol per litre. The hypoadrenal patient is unable

to raise their serum cortisol in response to synacthen.

>

> 22/2/11 on 15mg hydrocortisone

> Cortisol

> 0 mins - 350

> 30 mins - 431

> 60 mins - 490

> DHEAS result not back yet

> Testosterone < 0.1 nmol/L

> TSH - 6.0 (0.3 - 5.5)

> T4 - 8.2 (12 - 22)

> Adrenal antibodies - Negative

> I get angina type chest pains and go hyperthyroid.

>

[Guest guest]

Hello ,

It is extremely difficult to comment on those results, because I certainly do not know how to interpret SST results when a patient takes any steroids at all (and that would include not only HC, but any other sex hormones) and I doubt if many endos know how to interpret them correctly either. The test is very reliable and relatively straight forward to interpret as long as there is no exogenous steroid intake – but any steroids can mess up the interpretation. This is why your doctor says he can't tell whether you might have a pituitary problem (secondary 's) or you are steroid dependant. He is ruling out primary 's presumably on account of you not having tested positive for adrenal autoantibodies, which is a reasonable assumption. There is, btw, another indication for primary 's and that is to check your electrolytes (Natrium and Kalium). If your Na were extremely low and at the same time (you can't take those figures in isolation) your Kalium (potassium) were very high, then that could be a pointer for primary 's.... although, for as long as you are taking HC those values will most likely be in balance – only stressful situations might bring an imbalance to light. Unstable electrolytes are something to bear in mind for primary 's – secondary 's does not create unstable electrolytes though.

However, the fact that you go hyperthyroid without extra HC is an indication that you need extra HC, because your adrenals appear not to be strong enough to support your thyroid hormone without it. Therefore I would question if it is sensible to make you reduce the HC dosage. If you can cope well on 20 mg HC (which is still a physiological dosage) and take your thyroid meds, then what is the point in deliberately destabilizing your health for the sake of an SST test result? He has `ruled out' primary 's already on account of no autoantibodies, and to check for secondary 's there are other possibilities that do not involve stopping the HC – how about checking the pituitary gland with an MRI scan, for example ?

To my mind, if your morning cortisol level when taking HC is only around the 300 mark (give or take) as your base level tests have shown, then without HC the base level can only be even lower.... and that is too low to function normally in any case. A "healthy" looking cortisol level in the mornings would be around the 500 mark.

So IMHO your doctor's idea of reducing your HC seems silly. I just can't see the point of that. What he should be doing instead is look for the underlying cause of your low cortisol output..... but then, what are the chances of that? L

Best wishes,

[Guest guest]

Hi ,

Thank you for your reply.

He wants me to do the test again because he thinks my adrenals can heal and that

I wont have to take HC for the rest of my life!

He acknowledges that I have steroid dependancy but disagrees that adrenal and

thyroid linked!

He knows that I have a hysterectomy 8 years ago and was left with only 1 ovary

and my blood results confirm this but he is undecided about helping me replace

them - I already use natural progesterone cream. I didnt realise until reading

the internet last night that although they left one ovary that it failed aafter

1 or 2 years and wondered if I could be struggling due to that. Endo said he

wasnt interested in that aspect as he was only looking at adrenals!

What to do? My GP has referred me to him as I had admitted I was taking HC and

asked my GP to work with me on correcting my adrenals and showed him my saliva

tests. Thats how I ended up at the Endos.

Regards

>

> ,

>

> I'm assuming you were asked to stop taking the cortisone for at least 24 hours

before the test?

>

> Also the gpnotebook site says that you should start at more than 170 nmol per

ltr and rise to at least 580, which you failed to do even on cortisone (see

below).

>

> I think I'd be querying the results with him before agreeing to any of his

silly experiments....

>

> Also, are you sure you go hyper with just a little thyroid med or are you

unable to take it because of low adrenal function? There is a warning about

this on the patient information leaflet.

>

>

[Guest guest]

Hi ,

[[...He acknowledges that I have steroid dependancy but disagrees that

adrenal and thyroid linked! ...]]

There's a paper by Ross and Weetman in the files section on Circadian

Rhythm of Thyroid Hormone output.

It specifically mentions the eventual production of adrenal hormones

subsequent to the over-night peak in thyroid hormones.

best wishes

Bob

> >

> > ,

> >

> > I'm assuming you were asked to stop taking the cortisone for at

least 24 hours before the test?

> >

> > Also the gpnotebook site says that you should start at more than 170

nmol per ltr and rise to at least 580, which you failed to do even on

cortisone (see below).

> >

> > I think I'd be querying the results with him before agreeing to any

of his silly experiments....

> >

> > Also, are you sure you go hyper with just a little thyroid med or

are you unable to take it because of low adrenal function? There is a

warning about this on the patient information leaflet.

> >

> >

>

[Guest guest]

Hi Bob,

Might be me - but I've looked and I cant see it!!

>

>

> Hi ,

>

> [[...He acknowledges that I have steroid dependancy but disagrees that

> adrenal and thyroid linked! ...]]

>

>

>

> There's a paper by Ross and Weetman in the files section on Circadian

> Rhythm of Thyroid Hormone output.

>

> It specifically mentions the eventual production of adrenal hormones

> subsequent to the over-night peak in thyroid hormones.

>

> best wishes

>

> Bob

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi ,

Thank you for your reply.

I have had a recent MRI due to Menieres disease and that was fine so I presume

that anything would have shown up then?

I take your point about the result being lower than 500 now and it would be

lower if I didnt take HC! Why do you think then he wants me to do another one?

Im getting really confused by it all! Its really stressful!

I had a hysterectomy in 2003 and I asked him as I was low in DHEA, Testoseterone

and my LH and FSH were high that I should be supporting these with natural

hormones for the menopause. He said he didnt know and didnt want to throw

anything else " into the mix " !

I had my electrolytes tested about 10 months ago and all was normal then.

I have tried HC upto 50mg per day with 40mcg T3 and still not well! I feel as

bad with only 20mg HC and 20mcg T3!!! Dont know whats going on. Have B12

shots, take all the right vits, careful about candida,eat a good diet, take NAX,

under Dr P and still cant get well!

I feel desperate!

>

>

>

>

> Hello ,

>

> It is extremely difficult to comment on those results, because I

> certainly do not know how to interpret SST results when a patient takes

> any steroids at all (and that would include not only HC, but any other

> sex hormones) and I doubt if many endos know how to interpret them

> correctly either. The test is very reliable and relatively straight

> forward to interpret as long as there is no exogenous steroid intake

> – but any steroids can mess up the interpretation. This is why your

> doctor says he can't tell whether you might have a pituitary problem

> (secondary 's) or you are steroid dependant. He is ruling out

> primary 's presumably on account of you not having tested

> positive for adrenal autoantibodies, which is a reasonable assumption.

> There is, btw, another indication for primary 's and that is

> to check your electrolytes (Natrium and Kalium). If your Na were

> extremely low and at the same time (you can't take those figures in

> isolation) your Kalium (potassium) were very high, then that could be a

> pointer for primary 's.... although, for as long as you are

> taking HC those values will most likely be in balance – only

> stressful situations might bring an imbalance to light. Unstable

> electrolytes are something to bear in mind for primary 's

> – secondary 's does not create unstable electrolytes

> though.

>

>

>

> However, the fact that you go hyperthyroid without extra HC is an

> indication that you need extra HC, because your adrenals appear not to

> be strong enough to support your thyroid hormone without it. Therefore I

> would question if it is sensible to make you reduce the HC dosage. If

> you can cope well on 20 mg HC (which is still a physiological dosage)

> and take your thyroid meds, then what is the point in deliberately

> destabilizing your health for the sake of an SST test result? He has

> `ruled out' primary 's already on account of no

> autoantibodies, and to check for secondary 's there are other

> possibilities that do not involve stopping the HC – how about

> checking the pituitary gland with an MRI scan, for example ?

>

> To my mind, if your morning cortisol level when taking HC is only around

> the 300 mark (give or take) as your base level tests have shown, then

> without HC the base level can only be even lower.... and that is too low

> to function normally in any case. A " healthy " looking cortisol

> level in the mornings would be around the 500 mark.

>

> >

>

[Guest guest]

Hi , The paper Bob is referring to is not in the FILES

section, it is actually in the LINKS section. Click on LINKS in the Menu, and

then click on the FOLDER entitled 'Daily Rhythm- and you will find a lot of

information there about circadian Rhythm. Scroll to the bottom and there you

will find the paper Bob mentions. http://jcem.endojournals.org/cgi/content/full/93/6/2300

Might be me - but I've looked and I cant see it!!

>

>

> There's a paper by Ross and Weetman in the files section on Circadian

> Rhythm of Thyroid Hormone output.

>

> It specifically mentions the eventual production of adrenal hormones

> subsequent to the over-night peak in thyroid hormones.

>

> best wishes

>

> Bob

>

>

>

>

>

>

>

>

>

[Guest guest]

Thank you Sheila!

>

> Hi , The paper Bob is referring to is not in the FILES section, it is

> actually in the LINKS section. Click on LINKS in the Menu, and then click on

> the FOLDER entitled 'Daily Rhythm- and you will find a lot of information

> there about circadian Rhythm. Scroll to the bottom and there you will find

> the paper Bob mentions.

> http://jcem.endojournals.org/cgi/content/full/93/6/2300

>

>

>

> Might be me - but I've looked and I cant see it!!

>

> >

> >

> > There's a paper by Ross and Weetman in the files section on Circadian

> > Rhythm of Thyroid Hormone output.

> >

> > It specifically mentions the eventual production of adrenal hormones

> > subsequent to the over-night peak in thyroid hormones.

> >

> > best wishes

> >

> > Bob

> >

> >

> >

> >

> >

> >

> >

> >

> >

>

[Guest guest]

Hello ,I take your point about the result being lower than 500 now and it would belower if I didnt take HC! Why do you think then he wants me to do another one? Im getting really confused by it all! Its really stressful!

Yes, it is all very confusing and stressful L I am not sure what your endo is trying to prove by having another SST on a lower dose of HC. An SST is only of value if you are taking no steroids at all and have been off all HC for 6 weeks – and I mean none – even taking sex hormones like Serenity cream or HRT or whatever would invalidate the test result as I understand it.

Perhaps your endo is convinced that you are steroid depended and for all I know, you may well be.... but if you were steroid dependent, then you certainly have a jolly good reason for it – namely that your own adrenal glands are not working efficiently and you can't function without taking extra HC! But sadly this is something our doctors are not taught at med school. Something like adrenal support is not part of their education. And because they understand too little (?anything?) about adrenal fatigue, they tar everyone who takes HC off their own accord with the same brush. They do not differentiate between steroid use and steroid misuse. Doctors are taught that glucocorticoid has a place in treating severe inflammation or in treating 's disease, but has no place in treating something that "does not exist" (in their view) – i.e. adrenal fatigue. And this most likely is the crux of the matter – perhaps he wants to "prove" to you that you do not need HC by forcing you to wean yourself off ..... which to my mind would be a silly way to go about it because there is a high risk that your adrenals might not be strong enough yet for you to cope without extra HC.

I had my electrolytes tested about 10 months ago and all was normal then.

Electrolytes change constantly and their balance is maintained by the mineral-corticoids (mainly aldosterone) which are produced in the outer layer of the adrenal cortex. In primary 's this outer layer of the adrenal cortex gets destroyed by autoantibodies.... hence the electrolytes get dangerously out of kilter and a patient might experience an adrenal crash, which can be life threatening. You did not have any positive adrenal auto-antibodies which is (I guess) why your endo has ruled out primary 's. I do not know if one can categorically rule out primary AD by the absence of positive adrenal AAs, but the only definitive test for diagnosing or ruling out primary 's can only be made via a Synacthen test... albeit it would have to be a test result which has not been invalidated by taking exogenous steroids. There is only one glucocorticoid that will not falsify an SST result and that is Dexamethasone. So if your endo wanted to get a `true' SST result, he should prescribe Dexamethasone tablets for you and you should take those instead of the HC until after the test result.

Secondary 's – which is caused by a pituitary failure (not an adrenal failure) would not influence the electrolytes though.

I have had a recent MRI due to Menieres disease and that was fine so I presumethat anything* (*like a pituitary tumour) would have shown up then?I would suspect so, yes, but I remember some member on here told us some time ago that pituitary tumours can easily get overlooked unless the scan has been done using an injected contrast-dye. Still chances are that they would have found something in the scan if there had been a tumour..... so that leaves adrenal fatigue as the most likely diagnosis.... and adrenal fatigue does not exist in the vocabulary of our endo's L , so you can't win.

I have tried HC upto 50mg per day with 40mcg T3 and still not well! I feel asbad with only 20mg HC and 20mcg T3!!! Dont know whats going on. Have B12shots, take all the right vits, careful about candida,eat a good diet, take NAX,under Dr P and still cant get well!I feel desperate!Going up to 50 mg HC is a dicey thing to do as you would be venturing into therapeutic dosages of steroids and that is something you should avoid at all cost as this could shut down your own adrenal function pretty quickly. You really, really do not want to go there; it's not a good place to be. If at all possible stay within the physiological range of up to 30 mg HC.

I can't comment on to how best dose with T3. I have no experience of T3-only therapy. But the golden rule still applies – adrenals first, thyroid second. Since you are Dr. Peatfield's patient, he would be the best person to ask. I would leave a message on his machine and request a telephone consultation where you can discuss with him how to best juggle the HC and T3.

With best wishes,

[Guest guest]

Hi ,

Thank you for taking the time to reply and also for all the information

contained therein. :-)

I have actually received a letter of the endo this morning and he has said that

it looks as though my the SST has improved since |have reduced my steroids and

my ACTH is quite low. He goes on to say that " the steroid problem is likely to

be hypothalamopituitary and that these tests are comparable with it being as a

result of suppression with exogenous steroids though of course we would need to

see further improvement to a normal test to absolutely prove that " He goes on to

say that he is " going to wait for the DHEAS result and then write concerning the

adrogen levels as she would like to try some treatment for this although I think

it is unlikely that this is the main cause of her symptoms " .

(SST is only of value if you are taking no steroids at all and have been off

all HC for 6 weeks – and I mean none – even taking sex

hormones like Serenity cream or HRT or whatever would invalidate the

test result as I understand it.) - Do you think its worth asking him to repeat

the test when only taking Dexamthatone? Is there anything medical anywhere that

I can quote to him about this?

I did tell him that I have had to reduce my T3 when reducing my HC as I didnt

feel well! He didnt seem to listen to that.

I suppose it could be Secondary s - sould ACTH be low in this?

I went up tp 50mg HC under Dr P but only stayed on it for a short while. Could

only take 40mcg T3 then anyway so that didnt seem to work either. I think I

will fax Dr P with a copy of this letter and ask for his comments. I saw him

some months back.

Many thanks

>

>

>

>

>>

> >

>

> >

[Guest guest]

Hi ,

Yes I think you are right its thyroid intolerance! Is that what the information

talks about because if so then I can write this in the letter I propose to send

him. I did tell him but he didnt seem interested. I told him that I had to

reduce my thyroid med when I reduced my HC specially for this 2nd SST test. Yes

I did stop my HC a day before the test. All he says in his letter to me about

this is that " didnt feel well on the lower dose of steroids and has had some

dizziness, nausea and lightheadedness " . He doesnt mention that my husband told

him that I had severe muscle weakness and that the simplest thing made me hurt

all over!

I suppose that at least I am in the " system " so to speak and he is still

prescribing me HC on the NHS, and also my thyroid med. I know he wants me to

reduce the HC and stop altogether but what about if I cant? Surely he cant just

" abandon " me when he is supposed to be treating me?

His letter to me today says that he thinks the problem is hypothalamopituitary

and that " certainly these test would be comparible with it being as a result of

suppression with exogenous steroids though of course we would need to see

further improvement to a normal test to absolutely prove that "

regards

>

> >

> >

> >

>

>

>

>

>

>

> >

>

[Guest guest]

I have actually received a letter of the endo this morning and he has said thatit looks as though my the SST has improved since |have reduced my steroids andmy ACTH is quite low. He goes on to say that "the steroid problem is likely tobe hypothalamopituitary and that these tests are comparable with it being as aresult of suppression with exogenous steroids though of course we would need tosee further improvement to a normal test to absolutely prove that" He goes on tosay that he is "going to wait for the DHEAS result and then write concerning theadrogen levels as she would like to try some treatment for this although I thinkit is unlikely that this is the main cause of her symptoms".

Hi ,

ly, I do not understand what the doctor says in his letter....- how can he judge that your SST has `improved' compared with the first test when during both tests you were taking steroids ? Perhaps he knows something that I don't, but to my mind the instructions are very clear – the SST (or ACTH stim test – it's the same thing) is a pretty accurate tool to diagnose conditions like 's or Cushing's, but only when no exogenous steroids are taken. Which part of this does your doctor not understand, I wonder:

The person must fast at least 8 hours before the test which should be started by 10 am, but as close to 7 am as possible. The test shouldn't be given if on glucocorticoids, or adrenal extract supplement as these will affect test results.

The above is taken from the following Wiki site, http://en.wikipedia.org/wiki/ACTH_stimulation_test#Interpretation_of_results

I accept that not all information on Wiki is accurate, but I am 100% certain that this statement above is accurate.

Do you think its worth asking him to repeatthe test when only taking Dexamthatone? Is there anything medical anywhere thatI can quote to him about this?

To my mind if he wants to repeat the test and wants an accurate test result, then yes, you should ask him to put you on Dexamethasone instead of HC. I am not sure how long one would be allowed to take Dex without invalidating the test though - but you doctor should be able to find out –please see below.....

http://pathology.bsuh.nhs.uk/pathology/Portals/0/Biochemistry%20Documents/DFT%20protocols/Short%20Synacthen%20Test%20(rev%201).pdf

Patient Preparation

There are no dietary restrictions for this test.

• The test should be performed between 09:00 hrs & 12:00 hrs

• No steroid preparations should have been taken if the test is to be diagnostic, although dexamethasone treatment of short duration will not invalidate the test results.

• Note the dose of Synacthen for children is 36 .g/kg body weight up to a maximum of 250 .g.

• The patient should remain at rest during the test

Also taken from the same Wiki website is the chart below – it's well worth reading the entire website, btw ....- this is what your endo is referring to when he says that the DHEA results may shed more light....a low DHEA in combination with the other listed parameters might suggest a problem of either hypothalamus or pituitary gland. The chart is self-explanatory......

http://en.wikipedia.org/wiki/ACTH_stimulation_test#Other_hormones_and_chemicals_that_will_rise_in_the_ACTH_stimulation_test

Simple diagnostic chart

Source of pathology

CRH

ACTH

DHEA

DHEA-S

cortisol

aldosterone

renin

Na

K

Causes5

hypothalamus'('tertiary)1

low

low

low

low

low3

low

low

low

low

tumor of the hypothalamus (adenoma), antibodies, environment, head injury

pituitary(secondary)

high2

low

low

low

low3

low

low

low

low

tumor of the pituitary (adenoma), antibodies, environment, head injury,surgical removal6, Sheehan's syndrome

adrenal glands(primary)7

high

high

high

high

low4

low

high

low

high

tumor of the adrenal (adenoma), stress, antibodies, environment, 's, injury, surgical removal

1

Automatically includes diagnosis of secondary (hypopituitarism)

2

Only if CRH production in the hypothalamus is intact

3

Value doubles or more in stimulation

4

Value less than doubles in stimulation

5

Most common, doesn't include all possible causes

6

Usually because of very large tumor (macroadenoma)

7

Includes 's disease

I did tell him that I have had to reduce my T3 when reducing my HC as I didntfeel well! He didnt seem to listen to that.

Make his listen, .... if necessary, put it in writing to him......

With very best wishes,

[Guest guest]

MODERATED TO REMOVE PREVIOUS MESSAGES ALREADY READ. PLEASE CHECK YOU HAVE DONE

THIS BEFORE CLICKING SEND AND LEAVE ONLY A SMALL PORTION OF WHAT YOU ARE

RESPONDING TO.THIS IS VERY FRUSTRATING FOR THOSE WHO CHOSE THE OPTION TO READ

MESSAGES DIRECT FROM THE WEB SITE. LUV - SHEILA

_____________________________________________________

Thank you I think you have given me enough to write a letter to him.

I think I will wait to see what the DHEA is and what he says in his next letter

first.

Im very, very grateful!

Thank you!

> ly, I do not understand what the doctor says in his letter....- how

> can he judge that your SST has `improved' compared with the

> first test when during both tests you were taking steroids ? Perhaps he

> knows something that I don't, but to my mind the instructions are

> very clear – the SST (or ACTH stim test – it's the same

> thing) is a pretty accurate tool to diagnose conditions like

> 's or Cushing's, but only when no exogenous steroids are

> taken. Which part of this does your doctor not understand, I wonder:

>

[Guest guest]

> _____________________________________________________

>

> Thank you I think you have given me enough to write a letter to him.

I think I will wait to see what the DHEA is and what he says in his next letter

first.

>

> Im very, very grateful!

>

> Thank you!

>

>

> > ly, I do not understand what the doctor says in his letter....- how

> > can he judge that your SST has `improved' compared with the

> > first test when during both tests you were taking steroids ? Perhaps he

> > knows something that I don't, but to my mind the instructions are

> > very clear – the SST (or ACTH stim test – it's the same

> > thing) is a pretty accurate tool to diagnose conditions like

> > 's or Cushing's, but only when no exogenous steroids are

> > taken. Which part of this does your doctor not understand, I wonder:

> >

>