Re: Anyone know anything about urine tests and adrenals?

[Guest guest]

thyroid treatment/message/53292?thread\

ed=1 & l=1

was it this one Lynn?

Bob

>

> I wrote a two page post answering everyone's questions in detail . Do posts

get lost here sometimes!?

>

> Lynn

>

thyroid treatment/message/53292?thread\

ed=1 & l=1

[Guest guest]

Yes, this one. Where was it hidden? I am leaving the original post instead of

erasing it below as I usually would. Hope that is okay!

Lynn

>

> Hi Sheila -I am one of those non confrontational types. I am really afraid of

anyone who gets mad at me. I know it is bad, but it is the way I am. I have

stood up to doctors before for this type of thing, but I hate every second of

it.

>

> I guess I feel bad that I went to another GP to get my original diagnosis.

When I told her that I had antibodies, she kindof smiled and said nothing as if

humouring me because my TSH was normal.

>

> She thinks I have weaned off my HC by now I am sure, as the endo she sent me

to asked me to wean off them. The endo did not understand adrenal fatigue and

was aggressive and horrible to me so I never went back. It is me who wants the

ACTH STIM test and pituitary tests as I think I may have a pituitary problem or

a specific problem with my adrenals, rather than just normal adrenal fatigue.

>

> What I need is an endo that would put their ego aside long enough to work with

Dr. H and do the tests for me. This way my health insurance would cover them and

they would be MILES cheaper yes. My bf suggested emailing Dr. H and asking him

if he knows of any endos or docs in Ireland whom I could work with.

>

> Regarding the blood tests, I have sent an email to a private nurses agencies

and am working my way through the NI list, though slowly. There really is no way

to walk into a clinic/hospital in Ireland without a doctor's rx for tests. It's

different to the UK in that way. I was writing with someone else online who

ordered test form Genova and he said that he had to get a family friend to do

it.

>

> Thank you Sheila.

>

> Hi –It sounds crazy, but I feel bound to this doctor. I am 29 but

between the ages of 16 and 22 I had the most horrendous depressions. I was

actively suicidal. This doctor actually listened to me and was always there for

me. I really feel that leaving her would be disloyal somehow. Also, my mother

goes to her and she always asks about the family, so it would be really weird.

>

> She didn't tell me off for being on HC, but she said she was so angry at the

doctor for prescribing it to me and implied that if he had not gone to college

wit her hubby, she would have reported him to the IMC! She said that there was

" no medical basis at all " for me to be on HC and I was just too chicken to

interrupt her and explain about adrenal fatigue and stuff. I left the doctor who

put me on HC around May as he only wanted to keep me on low doses of HC and

thyroid and I felt he was overcharging for such basic service. I have heard

similar reports since then about people spending loads of money on him, but

getting nowhere.

>

> I will email DR. H and see if he could explain why I need to be on HC. Maybe I

should just change doctors though? I don't know.... Though I am under a medical

card scheme

http://www.citizensinformation.ie/categories/health/entitlement-to-health-servic\

es/medical_card as I WAS unemployed for a year and people that were unemployed

for a year keep this card for the next three years after taking up employment.

She is listed as my doctor on the medical card scheme and I am unsure how to

change to someone else. I pay so much cash for Dr. H; I would like to use my

medical card for the VERY basic service I get here in Ireland.

>

> A blood draw would normally take place in a hospital, but they only take

bloods if rx'd by a doctor practising within the hospital or from a GP within

the county. So, I am trying to see about the clinics list Sheila gave me and

have contacted some nurse's agencies also.

>

> " Hang on a minute.... so Dr. H. did instruct you not to take your HC on the

morning of the blood draw... - so that is clear then. If Dr. H. says all you

need to do for this particular test is to stop your HC on the day until after

the blood draw, then this is all you need to know and do.... sorted " - I have

read that it is useless to test ACTH or anything while on a steroid. Basically I

would like to know if I have adrenal fatigue,a pituitary problem or s and

I am not sure that a test done while on steroid (even if not taken that morning)

would be accurate. I have read that there is one type of steroid that will not

interfere with the ACTH test. Maybe I should ask to be put on that?

>

> Sadly, I did crash when I tried to wean off HC and also when I got on thyroid

with no adrenal support. It was an extremely unpleasant experience.

>

> What I mean about being miserable and gaining weight is that if I was off the

HC I would have to come off the thyroid also and then I would go severely hypo

again, even if it was only for two weeks.

>

> What does a parathyroid investigation mean? Is that something to do with

hypopituitary function?

>

> Thanks !

>

> Hi – No I don't have heavy periods, but I was at the heavier bleeding

stage when the iron and haemoglobin panel was taken.

> I am currently trying to find someone to draw blood so I can investigate the

Reverse T3 issue.

>

> Thanks everyone.

>

> BTW what is the correct etiquette here for responding to people's posts? A new

reply for each post or a post including them all like this?

>

[Guest guest]

Thank you so much . I don't know how I did not see this reply!

Embarrassing.

You give excellent advice.

Lynn

[Guest guest]

Hi Lynn, I can understand loyalty to the 'family doc', but if she is not helping you to get well you will have to decide which is more important-your health or your loyalty. If you have moved house then you would have reregistered in the new district, but if you have lived all your life in the same village I suppose it would feel weird. I thinkthat you are in very good hands with Dr. H- have never heard anything adverse , so just stick there and when you are well explain to you doc if you haven't changed, but not while you are ill. remember that depression is one of the more debilitating hypo symptoms- lack of T3- so that may not have been addressed optimally when you were younger. > Subject: Re: Anyone know anything about urine tests and adrenals?> > Yes, this one. Where was it hidden? I am leaving the original post instead of erasing it below as I usually would. Hope that is okay!> > Lynn> > > > > Thank you Sheila.> > > > Hi –It sounds crazy, but I feel bound to this doctor. I am 29 but between the ages of 16 and 22 I had the most horrendous depressions. I was actively suicidal. This doctor actually listened to me and was always there for me. I really feel that leaving her would be disloyal somehow. Also, my mother goes to her and she always asks about the family, so it would be really weird. > > > > > > ------------------------------------> > TPA is not medically qualified. Consult with a qualified medical practitioner before changing medication.> >

[Guest guest]

" remember that depression is one of the more debilitating hypo symptoms- lack of

T3- so that may not have been addressed optimally when you were younger " .

I know. I have thought that since my dx. Imagine how many years my thyroid has

been eaten away for! If only I had known thirteen years ago what I know now.

[Guest guest]

Hi

Lynn - If ever a time comes again where you wrote and posted a message to the

forum and you have difficulty finding it, then go to this forum web site, click

on 'Messages' and type in your email address in the 'search' box near to the

top of the page, and all the messages you have posted will come up in date

order. It is rare that messages get lost, but if they do, that is usually

down to a glitch. However, if somebody posts a message that is likely to

upset our members, or they use bad language or are rude to other members, then they

are rejected by one of our Moderators, but they always write to that member

asking them to reword what they have written and send it in again.

I

understand about you being of those who is a " non-confrontational "

type, but where your health is concerned, you must fight for this yourself if

your doctors don't know what they are doing - and believe me, not many

GP's know anything about hypothyroidism or low adrenal reserve apart from

looking at your thyroid function tests to see if they are within the reference

range and if they are outside, giving you a diagnosis of hypothyroidism and

treating you with levothyroxine only. Anything beyond that, they are not taught

what to do, and they don't have time to do the necessary research, so this is

when we have to learn to be assertive and not let such doctors get away with

it. It is often only through their patients letting their doctor know what they

have learned that doctors learn too. As Broda said in his lecture which I

posted the other door, all a doctor has to do to get a diagnosis is to listen

to their patient. There is a " confrontational " approach and then

there is the " assertive " approach.

It

seems to me that the doctors you have are bullies. You already know if they

" get mad " at you, this makes you afraid. Use that awareness, and be

ready for them next time. You can do this by learning the facts relating to your

situation, i.e. the doc. who smiled and humoured you when you asked to be

tested for antibodies. You should quietly tell her that the majority of

sufferers of hypothyroidism have Hashimoto's, they have antibodies which see

their thyroid gland as public enemy number one and set about its gradual

destruction. How does she know whether this is the case with you unless she tests

this. Next time, if she just smiles and says nothing when you ask a question,

repeat it again, quietly but firmly. Her silence would tell me she doesn't know

the answer. You are a bright person, so have faith that your own abilities will

work - and if your doctor continues to treat you with such disdain. Then walk -

and find a doctor who does care about his patients.

I

would definitely tell your doctor the truth, don't let her believe you have

weaned off HC if you have not - doctors must have the facts in case something

goes wrong. You know that you already know more about HC than she does, so

don't be afraid to give her the benefit of your learning - after all, you are a

patient who has experienced the benefits and you are taking physiological doses.

Remind her that for anybody who has a shortage of ANY hormone in their body,

they need to replace it with whatever that hormone is - just like those

patients with low thyroid hormone production must take thyroid hormone

replacement.

Why

feel bad because you went to another GP to get your original diagnosis? Imagine

what would have happened if you had NOT got a diagnosis from that person. You

did well, so pat yourself on the back for doing this.

Again,

I think you should write a letter to your GP and send a copy to the Head of

Practice asking for the tests you require, giving the reasons you need these

tests and asking to be referred to an endocrinologist of your choice because

you have researched about the adrenal/thyroid connection and you would like the

ACTH STIM test. Ask for your letter to be placed into your medical notes - and

Lynn, stop thinking more about your doctors reactions than you are about your

own health. It's YOUR health that matters - not your doctor. You can even

manage your illness without your doctor if that is what it comes to, though it

is better to have a doctor on your side - so long as they know what they are

doing and you trust them, which obviously you do not at the moment.

Luv

- Sheila

Yes, this one. Where was it hidden? I am

leaving the original post instead of erasing it below as I usually would. Hope

that is okay!

Lynn

> I guess I feel bad that I went to another GP to get my original diagnosis.

When I told her that I had antibodies, she kindof smiled and said nothing as if

humouring me because my TSH was normal.

>

> She thinks I have weaned off my HC by now I am sure, as the endo she sent

me to asked me to wean off them. The endo did not understand adrenal fatigue

and was aggressive and horrible to me so I never went back. It is me who wants

the ACTH STIM test and pituitary tests as I think I may have a pituitary

problem or a specific problem with my adrenals, rather than just normal adrenal

fatigue.

>

> What I need is an endo that would put their ego aside long enough to work

with Dr. H and do the tests for me. This way my health insurance would cover

them and they would be MILES cheaper yes. My bf suggested emailing Dr. H and

asking him if he knows of any endos or docs in Ireland whom I could work with.

>

[Guest guest]

Do you know whether you still have a thyroid Lynn. I don't, mine

has been destroyed completely.

Luv - Sheila

" remember that depression is one of the

more debilitating hypo symptoms- lack of T3- so that may not have been

addressed optimally when you were younger " .

I know. I have thought that since my dx. Imagine how many years my thyroid has

been eaten away for! If only I had known thirteen years ago what I know now.

No virus

found in this incoming message.

Checked by AVG - www.avg.com

Version: 8.5.427 / Virus Database: 270.14.108/2565 - Release Date: 12/15/09

19:58:00

[Guest guest]

I don't know, but I am working up the courage to go to my doc and ask for

adrenal tests so maybe I can ask for a thyroid ultrasound? Will that show how

much tissue is gone?

I have had thyroid symptoms for 13 years but feel good on my 5 grains of Erfa. I

know many coeliac patients need extra thyroid due to absorption problems while

the villi are healing. However, maybe I need that amount simply because lots of

my tissue is gone.

At diagnosis my antibodies were very high, but my TSH was 1.68, so I don’t

know how much that reveals about how much tissue is left. I was under the

impression that TSH levels FINALLY rise towards the end of the thyroid

destruction or do some Hashi's patients never get a raised TSH?

Lynn

[Guest guest]

Hi Lynn

An ultrasound should show how much tissue is left.

If your GP won't agree to the ultrasound, you can get them done in Brussels

relatively cheaply. There's a place in central Brussels that charges 45 euros

for a scan and you get the report to take away.

>

> I don't know, but I am working up the courage to go to my doc and ask for

adrenal tests so maybe I can ask for a thyroid ultrasound? Will that show how

much tissue is gone?

>

[Guest guest]

Hi Lynn - I would not 'ask' your GP for these verbally, I would

put your requests into a letter and send it to him. That way, s/he is more

likely to do something because your letter of requests should be placed into

your medical notes.  Do remember that the NHS ONLY test your adrenals to find

out whether you are suffering either 's disease (little or no cortisol

output) or Cushing's Syndrome (too high a level of cortisol) and they do not

test for low adrenal reserve, which is what you are more likely suffering with.

You can only test for that through the 24 hour salivary adrenal profile which

will show where your cortisol and DHEA levels lie at four specific times during

the day. TPA-UK members can get a discount for this test - look in our FILES

section and click on the FOLDER 'Discounts' for more information about this, or

read the information in our Christmas Newsletter http://www.tpa-uk.org.uk/newsletters/newsletter_dec09.pdf

In the letter, ask for the Thyroid Ultrasound too, though that

might not work.

Thyroid antibodies see your thyroid gland as public enemy number

one and set about its total destruction. Doctors do not often do further tests

to see whether you still have antibodies once you have been diagnosed and you

are on treatment. My thyroid has been destroyed completely through antibodies

and I am very happy on 3 grains of Erfa Thyroid and 25mcgs levothyroxine. If

you are still suffering symptoms, ask in your letter for your GP to test to see

if any of the following are low in the reference range: ferritin, vitamin B12,

vitamin D3, zinc, copper magnesium and folate. Any of these being low will stop

your thyroid hormone replacement from getting absorbed into the cells.

Also, have you checked to see whether there is the possibility

of you suffering with systemic candidiasis. Again, look in our FILES section of

the forum and check out 'Medical Questionnaires FOLDER and then complete both

the Candida and Adrenal Questionnaires and see how you score.

Ask for a double appointment with your GP in the letter because

you need time to discuss all these problems with him, and then ask for the

letter to be placed into your medical notes.

Send a copy to the Head of practice and show them that you mean

to get to the bottom of your problems, whatever it takes.

Good luck!

Luv - Sheila

I don't know, but I am working up the courage

to go to my doc and ask for adrenal tests so maybe I can ask for a thyroid

ultrasound? Will that show how much tissue is gone?

I have had thyroid symptoms for 13 years but feel good on my 5 grains of Erfa.

I know many coeliac patients need extra thyroid due to absorption problems

while the villi are healing. However, maybe I need that amount simply because

lots of my tissue is gone.

At diagnosis my antibodies were very high, but my TSH was 1.68, so I don’t

know how much that reveals about how much tissue is left. I was under the

impression that TSH levels FINALLY rise towards the end of the thyroid

destruction or do some Hashi's patients never get a raised TSH?

[Guest guest]

Hi Lynn, In some patients the TSH never rises- in some low thyroid states the absence of thyroid hormone affects the pituitarty, depressing it's effectiveness, so it doesn't put out TSH like it should. In any case the treatment would be the same- treat with replacement thyroid hormone until the symptoms go away, so unless you are seeking a NHS diagnosis there is little point in doing this. I too need more thyroid hormone than most, I'm well so it doesn't bother me, except when I have to pay for it! > thyroid treatment > From: lynndunning@...> Date: Sun, 27 Dec 2009 21:48:09 +0000> Subject: Re: Anyone know anything about urine tests and adrenals?> > I don't know, but I am working up the courage to go to my doc and ask for adrenal tests so maybe I can ask for a thyroid ultrasound? Will that show how much tissue is gone? > > I have had thyroid symptoms for 13 years but feel good on my 5 grains of Erfa. I know many coeliac patients need extra thyroid due to absorption problems while the villi are healing. However, maybe I need that amount simply because lots of my tissue is gone. > > At diagnosis my antibodies were very high, but my TSH was 1.68, so I don’t know how much that reveals about how much tissue is left. I was under the impression that TSH levels FINALLY rise towards the end of the thyroid destruction or do some Hashi's patients never get a raised TSH?> > Lynn> > > > > > ------------------------------------> > TPA is not medically qualified. Consult with a qualified medical practitioner before changing medication.> >

[Guest guest]

Thank you all so much! You are all so helpful.

I guess I just get so concerned about fighting and feeling like they all think I

am a hypochondriac or something. Are there any actual scientific references on

adrenal fatigue or low adrenal function aside from 's refs? I have been

on 30-35HC since December 2008 and have been unable to reduce my dose. Weaning

has simply not been possible. This makes me think that I am having an actual

's or Hypopit issue. However, it would be nice to educate my GP on

adrenal fatigue so she does not use the term " medical malpractice " again!

My first TPO antibodies taken in March 2009 were 180(0-50)and my most recent

labs in October were sadly:

AB to Thymoglobulin 100 (<100)

Anti TPO 139 (<16)

I did tell my GP this and I told her that the horrible endo does agree with

treating patients with normal TSH's but raised antibodies. Yet she just smiled

in a weird way.

I will tell GP that I simply cnanot wean off the HC. At this point, you all have

buoyed me up to realise that I simply cannot get this adrenals situation under

control without getting referred to an endo for more elaborate tests.

I know I can mange with Dr. Hertoghe but I just would like to know whether I

will be a lifelong adrenal patient or just need another year of treatment for

adrenal fatigue. If it is the former, then I would like treatment for that in my

own country as my prescription cost will be paid a bit by the government and

also my insurance will pay 30% of endo visits and all the costs of the tests.

Thanks everyone,

Lynn from Southern Ireland

[Guest guest]

Hi Lynn, try this

http://www.thyroid.org/professionals/publications/clinthy/clinthy_v183.pdf#page=13

COMMENTARY

Most patients with adrenal

insufficiency have normal pituitary thyroid

function, although their

serum TSH concentrations during the day tend to be

slightly increased,

suggesting that normal daytime cortisol secretion has a

small inhibitory effect on

TSH secretion (1). A few have an autoimmune

polyendocrine deficiency

syndrome, with both adrenal insufficiency and

hypothyroidism. Others, like

the children described by Abdullatif and Ashraf,

and adults described

elsewhere (2,3), have adrenal insufficiency (usually primary, but sometimes

central) and subclinical or overt hypothyroidism, and

their hypothyroidism

improves or disappears (increased thyroid secretion,

decreased TSH secretion)

when they are treated with replacement doses of

glucocorticoid. Most of

these patients have had chronic autoimmune

thyroiditis, and the

improvement was attributed to its amelioration,

implying that even a normal

quantity of glucocorticoid has some

immunosuppressive activity.

Others had a fall in TSH secretion, but no

change in serum T4 and T3

concentrations, suggesting that glucocorticoid

deficiency may sometimes

result in secretion of TSH with decreased biologic

activity. In patients with

adrenal insufficiency and hypothyroidism, T4

therapy should be withheld

for several weeks in order to determine if it is

indeed needed.

D. Utiger, M.D

References

1. s MH. Effects of

variations in physiological cortisol levels on

thyrotropin secretion in

subjects with adrenal insufficiency: a Clinical

Research Center Study. J Clin Endocrinol

Metab 2000;85:1388-93. 2. Topliss DJ, White EL, Stockigt JR. Significance of

thyrotropin excess in

untreated primary adrenal

insufficiency. J Clin Endocrinol Metab

1980;50:52-6.

3. Shigemasa C, Kouchi T,

Ueta Y, et al. Evaluation of thyroid function in

patients with isolated

adreno corticotropin deficiency. Am J Med Sci

1992;304:279-84.

@hotmail.com> Date: Tue, 29 Dec 2009 01:50:08 +0000> Subject: Re: Anyone know anything about urine tests and adrenals?> > Thank you all so much! You are all so helpful.> > I guess I just get so concerned about fighting and feeling like they all think I am a hypochondriac or something. Are there any actual scientific references on adrenal fatigue or low adrenal function aside from 's refs? I have been on 30-35HC since December 2008 and have been unable to reduce my dose. Weaning has simply not been possible. This makes me think that I am having an actual 's or Hypopit issue. However, it would be nice to educate my GP on adrenal fatigue so she does not use the term "medical malpractice" again!> > My first TPO antibodies taken in March 2009 were 180(0-50)and my most recent labs in October were sadly:> > AB to Thymoglobulin 100 (<100)> Anti TPO 139 (<16)> > I did tell my GP this and I told her that the horrible endo does agree with treating patients with normal TSH's but raised antibodies. Yet she just smiled in a weird way.> > I will tell GP that I simply cnanot wean off the HC. At this point, you all have buoyed me up to realise that I simply cannot get this adrenals situation under control without getting referred to an endo for more elaborate tests.> > I know I can mange with Dr. Hertoghe but I just would like to know whether I will be a lifelong adrenal patient or just need another year of treatment for adrenal fatigue. If it is the former, then I would like treatment for that in my own country as my prescription cost will be paid a bit by the government and also my insurance will pay 30% of endo visits and all the costs of the tests.> > Thanks everyone,> > Lynn from Southern Ireland> > > > > > ------------------------------------> > TPA is not medically qualified. Consult with a qualified medical practitioner before changing medication.> >

[Guest guest]

Lynne of COURSE they think you are a hypochondriac, they think we are all

hypochondriacs. They call us 'the worried well'. So why should you be treated

any different? I considered I should be treated with kindness and as a

competant adult once, but then I realised how selfish that was of me given that

everyone else has to put up with being put down Smile, its a mad mad world

Blessed is he who expects nothing for he will not be disappointed..My book of

Opinions.

luv Dawnx

>

> Thank you all so much! You are all so helpful.

>

> I guess I just get so concerned about fighting and feeling like they all think

I am a hypochondriac or something. Are there any actual scientific references on

adrenal fatigue or low adrenal function aside from 's refs? I have been

on 30-35HC since December 2008 and have been unable to reduce my dose. Weaning

has simply not been possible. This makes me think that I am having an actual

's or Hypopit issue. However, it would be nice to educate my GP on

adrenal fatigue so she does not use the term " medical malpractice " again!

>

> My first TPO antibodies taken in March 2009 were 180(0-50)and my most recent

labs in October were sadly:

>

> AB to Thymoglobulin 100 (<100)

> Anti TPO 139 (<16)

>

> I did tell my GP this and I told her that the horrible endo does agree with

treating patients with normal TSH's but raised antibodies. Yet she just smiled

in a weird way.

>

> I will tell GP that I simply cnanot wean off the HC. At this point, you all

have buoyed me up to realise that I simply cannot get this adrenals situation

under control without getting referred to an endo for more elaborate tests.

>

> I know I can mange with Dr. Hertoghe but I just would like to know whether I

will be a lifelong adrenal patient or just need another year of treatment for

adrenal fatigue. If it is the former, then I would like treatment for that in my

own country as my prescription cost will be paid a bit by the government and

also my insurance will pay 30% of endo visits and all the costs of the tests.

>

> Thanks everyone,

>

> Lynn from Southern Ireland

>

[Guest guest]

Hello Lynn,

***I guess I just get so concerned about fighting and feeling like they all think Iam a hypochondriac or something.

Welcome to the club - Many of us have been labelled hypochondriacs; not only by our doctors, but sadly sometimes even by our nearest and dearest.

***Are there any actual scientific references onadrenal fatigue or low adrenal function aside from 's refs?

I do not know of any recent scientific references in the sense that articles have been published in the medical journals about adrenal fatigue. "Officially" this syndrome does not exist.

However, there is no shortage of articles explaining Hypoadrenia, written by very reputable doctors from all over the world. Yet you will have a hard time in trying to get any doctor of the medical establishment to listen or taking it seriously....

For your own interest you might find the following article helpful. Be warned, the article is extremely long, but very informative - time well spent reading....

http://tuberose.com:80/Adrenal_Glands.html

Extract copied from text under the heading of Hypoadrenia: Hypoadrenia is such a common complaint and occurs in so many other conditions, that today's medical doctors rarely consider pursuing an adrenal-related diagnosis when someone complains of fatigue. Very few physicians have read and understood the entire range of medical journal reports that have been around for over one hundred years. Fifty years ago, physicians were far more likely than their modern counterparts to correctly diagnose this ailment. Information about non-'s hypoadrenia has been documented in medical literature for over one hundred years but unfortunately, this milder form of hypoadrenia is missed or misdiagnosed in doctors' offices every day, even though the patient clearly presents its classic symptoms. The fact that it usually remains undiagnosed does not lessen its debilitating influence on their health and feelings of well being.

Two reasons why conventional medical treatment for hypoadrenia is so hard to find is 1) Money: There are no patentable treatments for hypoadrenia produced by the pharmaceutical companies. There is no money to be made. 2) Politics: Since the 1970s, the FDA has "outlawed" and actively persecuted one of the chief natural remedies for hypoadrenia, an extremely safe remedy called adrenal cortical extract (ACE).

***I have beenon 30-35HC since December 2008 and have been unable to reduce my dose. Weaninghas simply not been possible. This makes me think that I am having an actual's or Hypopit issue. However, it would be nice to educate my GP onadrenal fatigue so she does not use the term "medical malpractice" again!

The only reliable way - that I know of - to check for either primary or secondary 's is to do an ACTH stim test. This stim test, however, is not possible to perform whilst a patient is taking HC or other steroids .... with the exception of Dexamethasone, which - although also a glucocorticoid - for some reason does not appear to negatively influence the result.

It is extremely hard to wean yourself off steroids after having taken them for a long time. This is because the adrenals will produce less themselves - either because they are too fatigued or damaged to produce enough cortisone and cortisol to get you through the day, or because they have shut down or reduced their production since all your body's needs have been supplemented with HC for so long. Coaxing the adrenals into producing those hormones again will have to be done very, very gradually and over a very long period of time. - But first it needs to be established if your adrenals are "rested" enough by now before to even try reducing the HC.

I wouldn't hold my breath about educating your GP, btw. She won't listen.....

***I will tell GP that I simply cnanot wean off the HC. At this point, you all havebuoyed me up to realise that I simply cannot get this adrenals situation undercontrol without getting referred to an endo for more elaborate tests.

Yes - be assertive and tell her you need a specialist to sort you out .... a specialist of *your* choice, that is.

***I know I can mange with Dr. Hertoghe but I just would like to know whether Iwill be a lifelong adrenal patient or just need another year of treatment foradrenal fatigue. If it is the former, then I would like treatment for that in myown country as my prescription cost will be paid a bit by the government andalso my insurance will pay 30% of endo visits and all the costs of the tests.I don't think any doctor will be able predict how long you will be needing adrenal support, unless you were to be diagnosed with one or the other form of 's - in such a case you would indeed need life-long steroid supplementation. But if you "only" suffer from adrenal fatigue, then the question for the length of treatment is anybody's guess. It would depend on the severity of your adrenal exhaustion.

Hope this helps a little,

Best wishes,

[Guest guest]

I guess I am lucky that my nearest and nearest were the ones saying there had to

be something up with me. My mother said that there was NO way it was normal to

be so cold all the time for instance.

My GP always raves about how intelligent I am, so I don't know why she seems to

think that I cannot educate myself about thyroid issues. Then again this is the

woman who once said to me pre diagnosis " I will test your thyroid yes since you

asked, but EVERYBODY coming into my office thinks they have a thyroid problem " .

AAAAAAAAGH!!!!! They probably do!

Is hypoadrenia not just a fancy word for 's? I read those articles a few

years back when I first got the AF diagnosis.

Sadly, I know the STIM is not possible on HC. This is the worrying part. Should

I even bother pursuing a diagnosis? Should I get dexa so I can do the STIM test?

How does one try to wean off HC safely? I followed the horrible endo's program

before where she tried to wean me off over a four month period. However when I

hit 25 from 35 I got palpitations, skin crawling sensations etc. again.

My GP will let me see any specialist of my choice, but the problem is I don't

know any nice endos or anything. People write to ME all the time asking for a

good Irish doctor or endo and I can't tell them anything as there seems to be

nobody.

Many thanks,

Lynn from Southern Ireland

[Guest guest]

Hi Lynn,

***Is hypoadrenia not just a fancy word for 's? I read those articles a fewyears back when I first got the AF diagnosis.

Nope, there is a HUGE difference..... Primary 's is the total failure of the adrenal glands to produce glucocorticoids and mineralcorticoids. This failure is brought about by an autoimmune destruction of the adrenal gland.

Secondary 's is the failure of the pituitary gland to secrete ACTH, a hormone which stimulates the adrenal glands. If I understand this correctly, the adrenal glands would in theory still be capable of producing the hormones, but because no ACTH demand is coming through from the pituitary gland, no production of gluco- and mineralcorticoids is forthcoming by the adrenal glands.

Adrenal fatigue, however, is just that - a fatigue.... although it is possible that extreme adrenal fatigue - if untreated - can lead to 's disease. Knackered adrenal glands should be able to heal and eventually pick up where they left off .... but even that can take many months to years - depending on the severity of the exhaustion.

Sadly, I know the STIM is not possible on HC. This is the worrying part. ShouldI even bother pursuing a diagnosis? Should I get dexa so I can do the STIM test?

First you need to find a good endo. Then you need to discuss this with him/her. If there were sufficient grounds to suspect 's, then - under very close supervision - this endo might temporarily switch you over to dexamethasone for the time needed until they can do an ACTH stim test. Before they can do this test, all the HC needs to have left your system, and I am not sure how long this will take after having been on HC for all this time. It's not just a question of switching and then having the test.....

How does one try to wean off HC safely? I followed the horrible endo's programbefore where she tried to wean me off over a four month period. However when Ihit 25 from 35 I got palpitations, skin crawling sensations etc. again.

The answer to that is - very, very, very slowly, by reducing probably 5 mg HC a day for a few weeks and then again, and again.... it will take however long it takes - could be up to a year. But the real question is - are your adrenals ready for weaning.... and before getting an answer to that question, you first need answers to a bunch of other questions - namely... what is really going on?My GP will let me see any specialist of my choice, but the problem is I don'tknow any nice endos or anything. People write to ME all the time asking for agood Irish doctor or endo and I can't tell them anything as there seems to benobody.

I'll email you privately about that one....

Best wishes,

[Guest guest]

Hi

Thanks for all the information. Now finally, I know what the difference between

Primary and Secondary 's is. Your explanation was clearer than others I

have read.

Is it the same test for Primary and Secondary 's?

Here are my original adrenal saliva tests taken in May 2008. Do they reveal

anything to you?

Cortisol*: saliva testing

Morning sample:13.1 (12-22)

Afternoon: 2.4 (5.0-9.0)

Evening: 3.4 (3.0-7.0)

Night: 1.1 (1.0-3.0)

Total daily cortisol*: 20 (21-41)

I am still on the search for an endo as the doc you mentioned is a GP rather

than an endo.

Lynn from Southern Ireland

[Guest guest]

Hi Lynn, No, you may not be condemmed to adrenal support for life- I though I was, but having given myself time to fully recover my thyroid with adrenal support too. After being well for a couple of years I have weaned myself VERY slowly down to a quarter of what I was taking. The standard weaning procedure just was too quick at halving the pred each month- I've been lowering every 6 months and this time my adrenals seem to be picking up the burden nicely. hypoadrenia does not just cover the extreme failure called s ,but covers the low adrenal states that are much more common and often exist as a result of exhaustion due to stress caused by thyroid failure. > Subject: Re: Anyone know anything about urine tests and adrenals?> > > Is hypoadrenia not just a fancy word for 's? I read those articles a few years back when I first got the AF diagnosis.> > > How does one try to wean off HC safely? I followed the horrible endo's program before where she tried to wean me off over a four month period. However when I hit 25 from 35 I got palpitations, skin crawling sensations etc. again.> > Many thanks,> > Lynn from Southern Ireland> > > > > > > > > ------------------------------------> > TPA is not medically qualified. Consult with a qualified medical practitioner before changing medication.> >

[Guest guest]

Hello Lynn,

I am glad I could help to make the picture about 's clearer for you. 's is the one subject I have been struggling to understand for the longest time. But then one day it just "clicked" and all the puzzling bits and pieces fell into place.

***Is it the same test for Primary and Secondary 's?

Yes, the ACTH test will diagnose or rule out both kinds of AD. The interpretation depends on ones cortisol starting levels and the body's reaction to the stimulation with ACTH hormone. This Wiki site explains it rather well.....

http://en.wikipedia.org/wiki/ACTH_stimulation_test extract:

Cortisol stimulation

In healthy individuals, the cortisol level should double from a value at least in the 20s within 60 minutes. If the cortisol level was a 25 before the stimulation (base level), after the stimulation it should reach at least 50 ug/dl.

Interpretation for primary adrenal insufficiency and 's disease

The base cortisol level in people with adrenal insufficiency is usually in the mid teens. If the ACTH stimulation test raises cortisol level to 20 ug/dl, that is not doubling and supports the diagnosis of primary adrenal insufficiency. In 's, base cortisol is well below 10 ug/dl and rises no more than 25 percent.

Interpretation for secondary adrenal insufficiency

ACTH may stimulate cortisol by a factor doubling, tripling, quadrupling or more from a low base value in patients suffering from secondary adrenal insufficiency. Stimulation resulting in a greater than 14-fold increase in serum concentration over 30 minutes has been reported; however in most cases serum cortisol levels only double or triple and most start with a base cortisol value of at least 10 ug/dl. The lower the base cortisol value, the more likely the patient's cortisol will stimulate by a high factor if they are secondary adrenal insufficient.[9]

.... or to put it in a nutshell: the lower your 'starting point' (blood cortisol base level), the greater the risk of adrenal insufficiency. So if your stim test starts off with a blood cortisol level before ACTH injection with a figure of 25 or slightly higher and this figure doubles one hour after the ACTH has been injected, you'll be all right. Your adrenals may be exhausted, but at least they are not irreparably damaged. - If, however, you start off with a blood cortisol level of below 20, you've got a problem... the lower the figure, the greater the problem.

Primary 's (which is extremely rare) would start with a figure of 10 or lower, and this figure would barely rise at all after stimulation with ACTH.... Primary AD is clear cut to interpret; Secondary AD is more complicated to diagnose and sometimes it even overlaps with Primary AD.

A diagnosis of Secondary 's would be made if you started with a figure in the low teens, and the ACTH stimulation will double or triple that figure, or even rise by a multiple factor. If this happened, more investigations would be necessary to establish what else is going on.

Please do not confuse your adrenal salivary figures with the base levels of blood cortisol levels. That's a very different ball game. Your salivary adrenal stress test from 2008 shows that your salivary cortisol levels were too low - but not *why* they were low. Whether your adrenals were just exhausted or actually damaged, can't be drawn from this test. It just tells you that your adrenals have been under a lot of stress, probably for many years - but it does not tell you if your adrenals are being either destroyed by autoantibodies or if your pituitary gland is not doing its job of transmitting ACTH to the adrenals, signalling them that they should go to work and produce cortisol.

***I am still on the search for an endo as the doc you mentioned is a GP ratherthan an endo.

I'm sorry that this doctor is no good for you. The only other suggestions I have is for you to google a list of ALL endocrinologists within a reasonable distance from you and once you have their names, to google them individually by name. If one of them catches your eye, you could email them and shortly describe your problem and make up your mind if you like their reply. Always ask if they specialise in thyroid or diabetes ...most specialize in diabetes, and those are probably not of too much use to you. - Other than that.... you could try to get your GP to co-operate with Dr. Herthoge and order tests for you which are suggested by Dr. H.

In any case I am wishing you and all members good health and happiness in 2010.