Re: NPTech Cortisol Results through this morning. Now I'm even more worried :(

June 20, 2008

Hi ,

I really think that with results like these you need treatment

now, not a long wait for a test that probably won't prove anything as it is

designed for 's disease, which is total failure of the adrenals-

you're not there- yet. I would start supplementing DHEA ASAP as this is the

precursor of a whole cascade of other hormones. See http://www.biovea.co.uk

or http://www.wholehealthproducts.com who do a neat automatic reorder as a

reduced price.

Subject: NPTech Cortisol Results through this

morning. Now I'm even more worried

Hi again. I feel like I am on the brink of collapsing. I have sent

copy and long e-mail to Endo and to GP and here is a copy and paste of

my salivary cortisol results from NPTech. What do you all think? Are

these results similar to your own? NHS now saying they will see me on

2nd July for short synacthen.

Salivary Cortisol:

8.00am 6.6 (range 12.0 to 33.0)

12 Noon 2.0 (range 10.0 to 28.0)

4.00pm 2.3 (range 6.0 to 11.8)

Midnight 1.3 (range 1.0 to 5.0)

Salivary DHEA Sulphate for Age Range 35-44 years

8.00am 2.4 (range 8.0 to 24.0)

12 Noon 1.7 (range 5.0 to 10.8)

4.00pm 1.8 (range 3.5 to 7.5)

Midnight 2.7 (range 2.0 to 5.0)

Regards,

------------------------------------

Messages are not a substitute for professional medical advice. Always

consult with a suitably qualified practitioner before changing

medication.

June 21, 2008

Hi Sheila

I haven't been able to telephone Dr Peatfield as I cannot afford

private care. Thanks for his number though. I have been trying to

fight the NHS instead. I e-mailed the endo with copy of my results and

also the GP. The GP phoned me back and said she would be prepared to

prescribe hydrocortisone but only if the Endo said it was OK to do so.

Yesterday I felt so weak I could barely sit up. I telephone the Endo's

office in tears at midday and the Endo's secretary said that the Endo

would get back to me that day and that if I didn't hear anything to

call her just before 4 (as the secretary was going home at 4). I

didn't hear anything so I did call just before 4 but no answer so I

guess she must have already gone home. Then as I got weaker and weaker

my husband telephoned them and left a message on their answerphone

saying that I am very poorly and can they do something. Still no

reply. The secretary did say when I called lunchtime that the Endo had

asked for my notes and had those on her desk along with my admissions

card for 2nd July Short Synacthen. My husband was going to take me to

A & E but we decided that a weekend on a stretcher in some coridoor

whilst being ignored would do more damage than being at home without

medical support. I cannot stand hospitals. Even when I had my kids we

were out within two hours with most of them.

Anyway Sheila, just wanted to say thanks for your support and to

update you, not that there is much to update really. I'm going to draw

up a list of symptoms now and will carry that on my person with copy

of the results incase something happens before 2nd July. I've only

been up an hour and already starting to feel sick and weak again.

> > Hi again. I feel like I am on the brink of collapsing. I have sent

> > copy and long e-mail to Endo and to GP and here is a copy and paste of

> > my salivary cortisol results from NPTech. What do you all think? Are

> > these results similar to your own? NHS now saying they will see me on

> > 2nd July for short synacthen.

> >

> > Salivary Cortisol:

> > 8.00am 6.6 (range 12.0 to 33.0) Too low - way below the range. Your

> corotisol should be highest in the range first thing in the morning so

> you can get through the day.

> > 12 Noon 2.0 (range 10.0 to 28.0) Too low - way below the range.

> > 4.00pm 2.3 (range 6.0 to 11.8) - Too low - way below the range yet

> again.

> > Midnight 1.3 (range 1.0 to 5.0) This is the ONLY one that is where

> your cortisol level should be - and you should be able to sleep OK.

> >

> > Salivary DHEA Sulphate for Age Range 35-44 years

> > 8.00am 2.4 (range 8.0 to 24.0) Your DHEA should be at the bottom of

> the range at this hour, but your level is far too low.

> > 12 Noon 1.7 (range 5.0 to 10.8) Too low

> > 4.00pm 1.8 (range 3.5 to 7.5) Ditto

> > Midnight 2.7 (range 2.0 to 5.0) Ditto - your DHEA should be at its

> highest level in the range at night.

June 21, 2008

Hi

I have just sent a FAX to Dr Peatfield and asked him to get back to me as a matter of urgency with his recommendations. As soon as I hear from him I will let you know. You should perhaps phone NHS direct and tell them you are suffering with what is probably severe adrenal stress - and you relaly should go to A and E but I know what you mean about being stuck in a corridor and not being seen by anybody. I will send a copy of your email also to Dr Theodore Friedman, he is our new medical adviser and see what he has to say also in case Dr Peatfield is unable to get back to me.

Keep your chin up and get lots of Siberian Ginseng, and high dose Vitamin C etc.

luv - Sheila

Hi Sheila I haven't been able to telephone Dr Peatfield as I cannot affordprivate care. Thanks for his number though. I have been trying tofight the NHS instead. I e-mailed the endo with copy of my results andalso the GP. The GP phoned me back and said she would be prepared toprescribe hydrocortisone but only if the Endo said it was OK to do so.Yesterday I felt so weak I could barely sit up. I telephone the Endo'soffice in tears at midday and the Endo's secretary said that the Endowould get back to me that day and that if I didn't hear anything tocall her just before 4 (as the secretary was going home at 4). Ididn't hear anything so I did call just before 4 but no answer so Iguess she must have already gone home. Then as I got weaker and weakermy husband telephoned them and left a message on their answerphonesaying that I am very poorly and can they do something. Still noreply. The secretary did say when I called lunchtime that the Endo hadasked for my notes and had those on her desk along with my admissionscard for 2nd July Short Synacthen. My husband was going to take me toA & E but we decided that a weekend on a stretcher in some coridoorwhilst being ignored would do more damage than being at home withoutmedical support. I cannot stand hospitals. Even when I had my kids wewere out within two hours with most of them.Anyway Sheila, just wanted to say thanks for your support and toupdate you, not that there is much to update really. I'm going to drawup a list of symptoms now and will carry that on my person with copyof the results incase something happens before 2nd July. I've onlybeen up an hour and already starting to feel sick and weak again.> > Hi again. I feel like I am on the brink of collapsing. I have sent> > copy and long e-mail to Endo and to GP and here is a copy and paste of> > my salivary cortisol results from NPTech. What do you all think? Are> > these results similar to your own? NHS now saying they will see me on> > 2nd July for short synacthen.> >> > Salivary Cortisol:> > 8.00am 6.6 (range 12.0 to 33.0) Too low - way below the range. Your> corotisol should be highest in the range first thing in the morning so> you can get through the day.> > 12 Noon 2.0 (range 10.0 to 28.0) Too low - way below the range.> > 4.00pm 2.3 (range 6.0 to 11.8) - Too low - way below the range yet> again.> > Midnight 1.3 (range 1.0 to 5.0) This is the ONLY one that is where> your cortisol level should be - and you should be able to sleep OK.> >> > Salivary DHEA Sulphate for Age Range 35-44 years> > 8.00am 2.4 (range 8.0 to 24.0) Your DHEA should be at the bottom of> the range at this hour, but your level is far too low.> > 12 Noon 1.7 (range 5.0 to 10.8) Too low> > 4.00pm 1.8 (range 3.5 to 7.5) Ditto> > Midnight 2.7 (range 2.0 to 5.0) Ditto - your DHEA should be at its> highest level in the range at night.

No virus found in this incoming message.Checked by AVG. Version: 7.5.524 / Virus Database: 270.4.1/1511 - Release Date: 20/06/2008 11:52

June 21, 2008

Hi Sheila

I don't know how to thank you. You've been a great support and I will

never forget it.

Love

x

>

> Hi

>

> I have just sent a FAX to Dr Peatfield and asked him to get back to

me as a matter of urgency with his recommendations. As soon as I hear

from him I will let you know. You should perhaps phone NHS direct and

tell them you are suffering with what is probably severe adrenal

stress - and you relaly should go to A and E but I know what you mean

about being stuck in a corridor and not being seen by anybody. I will

send a copy of your email also to Dr Theodore Friedman, he is our new

medical adviser and see what he has to say also in case Dr Peatfield

is unable to get back to me.

>

> Keep your chin up and get lots of Siberian Ginseng, and high dose

Vitamin C etc.

>

> luv - Sheila

June 21, 2008

Hi

Thanks for the info. I am hoping that the Short Synacthen will

actually show s, though like you say there is no guarantee. I

have been in touch with a couple of people who were diagnosed with

s whose 24 hour salivary tests were actually not quite as bad

as mine when they were diagnosed. Thank you so much for the links you

gave, I will take a look. I do have some DHEA ordered from

International Pharmacy when I ordered my Cortef. Haven't taken either

yet. I have also found out that it should be possible for my Endo to

prescribe an alternative corticosteroid called Dexamethasone, in the

interim, as it should not interefere with my Short Synacthen results

on the 2nd July. I have written a long letter to my Endo and GP this

morning, including all my symtoms and copies of results, and in the

letter I have asked the Endo if she can prescribe some Dexamethasone

in the interim. Whether she agrees or not is another matter

I got reading up the site about Adrenal Fatigue last night and my

graphs from NPTech look very similar indeed to stage 7, with the

reduced DHEA as well as very low cortisole. To compare I have uploaded

my NPTech results to the photo section in an album named:

Photo 1: My results from NP Tech

http://health.ph./group/thyroid treatment/photos/view/af3d?\

b=1 & m=f & o=0

Photo 2: My NP Tech Graph

http://health.ph./group/thyroid treatment/photos/view/af3d?\

b=2 & m=f & o=0

Photo 3: The ASI Stage Seven Graph

http://health.ph./group/thyroid treatment/photos/view/af3d?\

b=3 & m=f & o=0

On the Chronic Fatigue site for stage 7 (which looks similar to my own

graph) http://www.chronicfatigue.org/ASI%207.html it states: " We trust

that we will not see many ASI tests like this one. There is little to

say about it. The body has given up and the Adrenal is in a state of

near complete failure. Fortunately, the vast number of patients today

are helped so that they do not end up in this phase. What is difficult

to do, and takes great care and understanding of the nature of these

Key phases, is to return a phase 2 to 5 back to normal. This is the

real challenge to all physicians who desire to treat this condition. "

I did mention to the Endos back in 2004 that I had adrenal problems,

they weren't willing to listen. Now at stage 7 it is too late to heal

my adrenals.

Thank you for your help. I'm feeling quite low at the moment and

extremely weak.

>

> Hi ,

> I really think that with results like these you need

treatment

> now, not a long wait for a test that probably won't prove anything

as it is

> designed for 's disease, which is total failure of the adrenals-

> you're not there- yet. I would start supplementing DHEA ASAP as this

is the

> precursor of a whole cascade of other hormones. See

http://www.biovea.co.uk

> or http://www.wholehealthproducts.com who do a neat automatic

reorder as a

> reduced price.

>

June 21, 2008

Hi ,

Sorry to hear about the hopeless response of the NHS to your

situation. It sounds as though you're doing incredibly well at

researching and communicating as well as you can though, which you

deserve a boxful of medals for, in the circumstances!

I just wanted to respond to what you say about Stage 7 adrenal

fatigue, and the comments on the chronic fatigue website. I got my

adrenal saliva results back a few weeks ago, and they are also Stage 7

. I found that website too, and was really upset and freaked out by

what they said

" We trust

> that we will not see many ASI tests like this one. There is little to

> say about it. The body has given up and the Adrenal is in a state of

> near complete failure. Fortunately, the vast number of patients today

> are helped so that they do not end up in this phase.

However, on looking into it further, not all sources take this dire

view of Stage 7. Yes, it obviously is serious, but authors like

seem to take the view that it's still possible to recover.

Timescales given indicate 10 months to 2 years. I think there's

probably some confusion in that while 's is a diagnosis made on

the basis of severely compromised adrenal function, the majority of

those with s have it because of autoimmune attack of the

glands. In that case, the tissue will not regenerate (I

think?!).However, you can also have serious loss of adrenal function

because they are worn out (due to stress, including probs of hypoT and

poor treatment of hypoT). This can potentially be recovered from. So

although it's not a great place to be, all is not necessarily lost!

Meanwhile, lots of love to you, Janet

June 21, 2008

Hello ,

I just read your thread ... I have no personal experience with

's, although I do know of one person with 's and I do

know quite a bit about 's in dogs - and the disease is the

same, as is the treatment (only the amounts of Florinef for the

treatment differ).

I don't know if you have got anywhere after your last posting, but if

not, it might be an idea to ask your GP or anybody available (A & E?)

to do an Electrolyte test for you ASAP. It's a quick blood test that

will tell you your Na:K ratio. Na is Natrium (or Sodium) and K is

Potassium. High Potassium (K) and Low Sodium (Na) is indicative for

's and gives you an indication how stable or unstable the

situation might be at this point in time. The ratio is calculated by

dividing the higher figure (Na) by the lower one (K).

For example... if your K were for instance 5.9 and your Na for

instance 140, your Na:K would be 140 : 5.9 = 23.72

The critical cut off point for an ian crash is a ratio of 27.

Any figure below that point and you'd be extremely vulnerable for a

crash and any additional stress could push you over the edge....

My point is that once a doctor realizes that your Na:K ratio is below

the ian crash figure, and combined with your adrenal test

results, they should jump into action straight away and organize a

Synacthen test PDQ and also rehydrate you, if necessary via an iv

drip. The treatment for 's is mineralcorticoid like Florinef

(as opposed to Glucocorticoid), although Hydrocortisone could " carry "

you for a while.

For the moment, it is vitally important for you to stay hydrated. It

would be dehydration that can trigger a crash.

I hope you have been able to get in touch with Dr. Peatfield or Dr.

Friedman and hopefully got expert advice and quick treatment.

Best of luck

love,

June 21, 2008

Hi ,

I really feel for you and hope you are soon well on the road to recovery. I see you have had a full adrenal profile done at the NPTech, I have just ordered a kit to do this myself, I am in no way as poorly as you are but I do have Hashimotos and want to rule out any other problems. Is it easy to do and how long do you have to wait for the results? I have suffered depression twice in my life, the second time was bought on by my undetected Hypothyroidism and each time being very stressful so I wonder if my adrenals have been compromised. Do they recomend treatment if your tests prove you need it and where would you go to get that?

I hope you dont mind me asking you all these questions

From: <cherimoya@...>Subject: Re: NPTech Cortisol Results through this morning. Now I'm even more worried thyroid treatment Date: Saturday, 21 June, 2008, 1:00 PM

Hi Thanks for the info. I am hoping that the Short Synacthen willactually show s, though like you say there is no guarantee. Ihave been in touch with a couple of people who were diagnosed withs whose 24 hour salivary tests were actually not quite as badas mine when they were diagnosed. Thank you so much for the links yougave, I will take a look. I do have some DHEA ordered fromInternational Pharmacy when I ordered my Cortef. Haven't taken eitheryet. I have also found out that it should be possible for my Endo toprescribe an alternative corticosteroid called Dexamethasone, in theinterim, as it should not interefere with my Short Synacthen resultson the 2nd July. I have written a long letter to my Endo and GP thismorning, including all my symtoms and copies of results, and in theletter I have asked the Endo if she can prescribe some Dexamethasonein the interim. Whether she

agrees or not is another matter :(I got reading up the site about Adrenal Fatigue last night and mygraphs from NPTech look very similar indeed to stage 7, with thereduced DHEA as well as very low cortisole. To compare I have uploadedmy NPTech results to the photo section in an album named: Photo 1: My results from NP Techhttp://health. ph.groups. / group/thyroidpat ientadvocacy/ photos/view/ af3d?b=1 & m=f & o=0Photo 2: My NP Tech Graphhttp://health. ph.groups. / group/thyroidpat ientadvocacy/ photos/view/ af3d?b=2 & m=f & o=0Photo 3: The ASI Stage Seven Graphhttp://health. ph.groups. / group/thyroidpat ientadvocacy/ photos/view/ af3d?b=3 & m=f & o=0On the Chronic Fatigue site for stage 7 (which looks similar to my owngraph) http://www.chronicf atigue.org/ ASI%207.html it states: "We trustthat we will not see many ASI tests like this one. There is little tosay about it. The body has given up and the Adrenal is in a state ofnear complete failure. Fortunately, the vast number of patients todayare helped so that they do not end up in this phase. What is difficultto do, and takes great care and understanding of the nature of theseKey phases, is to return a phase 2 to 5 back to normal. This is thereal challenge to all physicians who desire to

treat this condition."I did mention to the Endos back in 2004 that I had adrenal problems,they weren't willing to listen. Now at stage 7 it is too late to healmy adrenals.Thank you for your help. I'm feeling quite low at the moment andextremely weak.>> Hi ,> I really think that with results like these you needtreatment> now, not a long wait for a test that probably won't prove anythingas it is> designed for 's disease, which is total failure of the adrenals-> you're not there- yet. I would start supplementing DHEA ASAP as thisis the> precursor of a whole cascade of other hormones. Seehttp://www.biovea. co.uk> or http://www.wholehea lthproducts. com who do a neat automaticreorder as a> reduced price.>

Sent from .

A Smarter Email.

June 21, 2008

He can't be around , as I have not heard from him, and he always responds to moy FAXES immediately. Neither does Dr Friedman appear to be around. We can do without the weekends when we have problems such as yhours. How are you feeling right now - much better, I hope.

Big (((HUGS))) and just take it easy.

Luv - Sheila

Hi SheilaI don't know how to thank you. You've been a great support and I willnever forget it.Love x>> > Hi > > I have just sent a FAX to Dr Peatfield and asked him to get back tome as a matter of urgency with his recommendations. As soon as I hearfrom him I will let you know. You should perhaps phone NHS direct andtell them you are suffering with what is probably severe adrenalstress - and you relaly should go to A and E but I know what you meanabout being stuck in a corridor and not being seen by anybody. I willsend a copy of your email also to Dr Theodore Friedman, he is our newmedical adviser and see what he has to say also in case Dr Peatfieldis unable to get back to me.> > Keep your chin up and get lots of Siberian Ginseng, and high doseVitamin C etc.> > luv - Sheila

No virus found in this incoming message.Checked by AVG. Version: 7.5.524 / Virus Database: 270.4.1/1511 - Release Date: 20/06/2008 11:52

June 21, 2008

Hi Janet

Thank you so much for your posting. I wonder how many people in stage

7 are there due to antibodies attacking the adrenal glands, and how

many people are there due to worn out and stressed adrenal glands

(that may still be able to recover). What you say makes sense. My

Endocrinologist did say that she is going to test for adrenal

antibodies, so hopefully that will give a better picture. Best of luck

with your own adrenal problems!

>

> Hi ,

> Sorry to hear about the hopeless response of the NHS to your

> situation. It sounds as though you're doing incredibly well at

> researching and communicating as well as you can though, which you

> deserve a boxful of medals for, in the circumstances!

> I just wanted to respond to what you say about Stage 7 adrenal

> fatigue, and the comments on the chronic fatigue website. I got my

> adrenal saliva results back a few weeks ago, and they are also Stage 7

> . I found that website too, and was really upset and freaked out by

> what they said

>

> " We trust

> > that we will not see many ASI tests like this one. There is little to

> > say about it. The body has given up and the Adrenal is in a state of

> > near complete failure. Fortunately, the vast number of patients today

> > are helped so that they do not end up in this phase.

>

> However, on looking into it further, not all sources take this dire

> view of Stage 7. Yes, it obviously is serious, but authors like

> seem to take the view that it's still possible to recover.

> Timescales given indicate 10 months to 2 years. I think there's

> probably some confusion in that while 's is a diagnosis made on

> the basis of severely compromised adrenal function, the majority of

> those with s have it because of autoimmune attack of the

> glands. In that case, the tissue will not regenerate (I

> think?!).However, you can also have serious loss of adrenal function

> because they are worn out (due to stress, including probs of hypoT and

> poor treatment of hypoT). This can potentially be recovered from. So

> although it's not a great place to be, all is not necessarily lost!

> Meanwhile, lots of love to you, Janet

>

June 21, 2008

Hi

Thank you so much for your informative posting. The Na:K ratio info is

interesting and I will try to learn all that. Retaining information

isn't my strongest point at the moment, so will print your posting.

Incidentally the Endo said at the last appointment that she will be

putting me on Hydrocortisone (depending on Short Synacthen results).

Are you saying that there are 'better' treatments that I should be

pushing for if it is s and if so any advice on how to broach

the subject with Endo? She stated that Hypdrocortisone is the usual

treatment in the UK, and of course I won't be surprised if it isn't

the optimum course of action, given the NHS's obsession with treating

thyroid patients with thyroxine only.

it might be an idea to ask your GP or anybody available (A & E?)

> to do an Electrolyte test for you ASAP. It's a quick blood test that

> will tell you your Na:K ratio. Na is Natrium (or Sodium) and K is

> Potassium. High Potassium (K) and Low Sodium (Na) is indicative for

> 's and gives you an indication how stable or unstable the

> situation might be at this point in time. The ratio is calculated by

> dividing the higher figure (Na) by the lower one (K).

>

> For example... if your K were for instance 5.9 and your Na for

> instance 140, your Na:K would be 140 : 5.9 = 23.72

> The critical cut off point for an ian crash is a ratio of 27.

> Any figure below that point and you'd be extremely vulnerable for a

> crash and any additional stress could push you over the edge....

>

> My point is that once a doctor realizes that your Na:K ratio is below

> the ian crash figure, and combined with your adrenal test

> results, they should jump into action straight away and organize a

> Synacthen test PDQ and also rehydrate you, if necessary via an iv

> drip. The treatment for 's is mineralcorticoid like Florinef

> (as opposed to Glucocorticoid), although Hydrocortisone could " carry "

> you for a while.

June 21, 2008

Hi Sheila

I'm keeping going with lucozade and having to snack every few minutes.

Things get worse when I go outside of the home so I'm trying to stay

indoors at the moment and take things easy. I'm off for a rest now,

hubby is going to feed the masses. I just wanted to say thank you so

much for your concern and for donig your best to help me. You're a

great friend.

xx

>

> He can't be around , as I have not heard from him, and he

always responds to moy FAXES immediately. Neither does Dr Friedman

appear to be around. We can do without the weekends when we have

problems such as yhours. How are you feeling right now - much better,

I hope.

>

> Big (((HUGS))) and just take it easy.

>

> Luv - Sheila

June 21, 2008

> >

> > He can't be around , as I have not heard from him, and he

> always responds to moy FAXES immediately. Neither does Dr Friedman

> appear to be around. We can do without the weekends when we have

> problems such as yhours. How are you feeling right now - much

better,

> I hope.

> >

> > Big (((HUGS))) and just take it easy.

> >

> > Luv - Sheila

>

June 21, 2008

, get as many bottles of lucozade down as you can. Just drink, drink and then drink again. Please do not delay seeking help any longer as it is VITAL you get some hydrocortisone immediately. Can your husband take you to your local hospital to get the tests you need right now.

Luv - Sheila

Re: NPTech Cortisol Results through this morning. Now I'm even more worried

Hi SheilaI'm keeping going with lucozade and having to snack every few minutes.Things get worse when I go outside of the home so I'm trying to stayindoors at the moment and take things easy. I'm off for a rest now,hubby is going to feed the masses. I just wanted to say thank you somuch for your concern and for donig your best to help me. You're agreat friend.xx>> He can't be around , as I have not heard from him, and healways responds to moy FAXES immediately. Neither does Dr Friedmanappear to be around. We can do without the weekends when we haveproblems such as yhours. How are you feeling right now - much better,I hope.> > Big (((HUGS))) and just take it easy.> > Luv - Sheila

No virus found in this incoming message.Checked by AVG. Version: 7.5.524 / Virus Database: 270.4.1/1511 - Release Date: 20/06/2008 11:52

June 21, 2008

Hello ,

If you are feeling that low, you should be taken to A & E. To be

honest - and I don't say this lightly - it would probably be best to

call an ambulance. If your husband (or anybody else) takes you, you

will probably be waiting around for hours in the A & E before you get

seen. If you call an ambulance and tell them that you are suspecting

an addisonian crash, you go to the head of the queue - and so you

should, as an addisonian crash can be life threatening. You probably

need IV fluids, an ACTH test and treatment with Hydrocortisone or

Florinef straight away.

's is a very rare condition and unfortunately not many doctors

and even endo's have seen many (if any) cases - so not many are sure

about the correct treatment. As I said, I don't know much about human

cases, but I deal a lot with autoimmune diseases in dogs, and

's is one that pops up frequently. This is how I know that the

correct treatment for primary 's is MINERALcorticoid -

Florinef - and not GLUCOcorticoid - Hydrocortisone or Prednisolone.

Although as I said, HC will prop you up for a while.

Having said that - there are 3 types of 's - Primary AD (Total

failure of the adrenal glands), Secondary AD and Atypical AD. I am

not sure about the correct treatment for secondary AD (which is even

rarer), but for primary AD you need Florinef - whilst atypical AD is

treated with HC or Prednisolone. The only definitive test for

's is the ACTH stimulation test. The Na:K ratio that I

mentioned before, will be indicative (if not diagnostic) for Primary

's - but not for atypical AD. If you had atypical AD, the Na:K

ratio would be normal...... this is why you would need both - an

Electrolyte test AND an ACTH test.

I can't advise you what to do, but if you really feel as bad as you

say you do, then don't waste time, call an ambulance and get checked

out .... True 's - rare as it is (only one in 100.000 people,

they say) is a life threatening condition and needs immediate

treatment. - but in the meantime - as Sheila said - drink, drink,

drink....

Love - and all fingers crossed,

June 21, 2008

A thought has just crossed my mind.... I do not know, but does

Lucozade contain potassium ???? - of so, it would be the wrong

substance to drink, as it would drive the potassium in the blood even

higher - which can be dangerous if this were really 's.

Can sombody find out, please ????

Thanks,

June 21, 2008

Glucose

>

> A thought has just crossed my mind.... I do not know, but does

> Lucozade contain potassium ???? - of so, it would be the wrong

> substance to drink, as it would drive the potassium in the blood

even

> higher - which can be dangerous if this were really 's.

> Can sombody find out, please ????

>

> Thanks,

>

June 21, 2008

Just done a quick google....

The ingredients from the label - carbonated water, glucose syrup

(26%), citric acid, lactic acid, flavourings (including caffeine),

preservatives (sodium benzoate, sodium bisulphite), antioxidant

(ascorbic acid), colour (sunset yellow) don't indicate much. I tried

to find out more and it seems (extracted from this website)

http://www.ciao.co.uk/Lucozade_Sport__Review_5323929 that Lucozade

SPORT does contain electrolytes (sodium and potassium) - so I think

that ordinary Locozade is probably ok, but the SPORT version might be

the wrong substance to take for an ian. It would bring up the

sodium, but most likely also the potassium ......

But I must stress, I am not a doctor, and I am not qualified to

advice - I am only guessing - but to be on the safe side, drinking

water might be the better bet.

Love,

June 21, 2008

*** I have also found out that it should be possible for my Endo to

prescribe an alternative corticosteroid called Dexamethasone, in the

interim, as it should not interefere with my Short Synacthen results on

the 2nd July.

- I just want to confirm what you have been told above....

Dexamethasone is indeed the only steroid that would not falsify any

results and you could be prescribed Dex to prop you up until you can

have either a short Synacthen test or the more traditionally 2 hour

ACTH test. - If you took any other steroid, the test would be invalid.

This info just in case nobody will give you an ACTH test before your

appointment on 2nd July.....

love and best of luck,

June 21, 2008

Hi

I have just realised that Dr Peatfield is away from home doing his

Malvern Clinic yesterday and today. No wonder I couldn't get a response

from him. I will get back to you with further news if I can.

Luv - Sheila

>

> Hi Sheila

>

> I'm keeping going with lucozade and having to snack every few minutes.

> Things get worse when I go outside of the home so I'm trying to stay

> indoors at the moment and take things easy. I'm off for a rest now,

> hubby is going to feed the masses. I just wanted to say thank you so

> much for your concern and for donig your best to help me. You're a

> great friend.

>

> xx

>

> >

> > He can't be around , as I have not heard from him, and he

> always responds to moy FAXES immediately. Neither does Dr Friedman

> appear to be around. We can do without the weekends when we have

> problems such as yhours. How are you feeling right now - much better,

> I hope.

> >

> > Big (((HUGS))) and just take it easy.

> >

> > Luv - Sheila

>

June 21, 2008

Hi , in agreement with , get yourself to a hospital to

be on the safe side if nothing else! Ruth x

>

> Hello ,

>

> If you are feeling that low, you should be taken to A & E. To be

> honest - and I don't say this lightly - it would probably be best

to

> call an ambulance. If your husband (or anybody else) takes you, you

> will probably be waiting around for hours in the A & E before you

get

> seen. If you call an ambulance and tell them that you are

suspecting

> an addisonian crash, you go to the head of the queue - and so you

> should, as an addisonian crash can be life threatening. You

probably

> need IV fluids, an ACTH test and treatment with Hydrocortisone or

> Florinef straight away.

>

> 's is a very rare condition and unfortunately not many

doctors

> and even endo's have seen many (if any) cases - so not many are

sure

> about the correct treatment. As I said, I don't know much about

human

> cases, but I deal a lot with autoimmune diseases in dogs, and

> 's is one that pops up frequently. This is how I know that

the

> correct treatment for primary 's is MINERALcorticoid -

> Florinef - and not GLUCOcorticoid - Hydrocortisone or

Prednisolone.

> Although as I said, HC will prop you up for a while.

>

> Having said that - there are 3 types of 's - Primary AD

(Total

> failure of the adrenal glands), Secondary AD and Atypical AD. I am

> not sure about the correct treatment for secondary AD (which is

even

> rarer), but for primary AD you need Florinef - whilst atypical AD

is

> treated with HC or Prednisolone. The only definitive test for

> 's is the ACTH stimulation test. The Na:K ratio that I

> mentioned before, will be indicative (if not diagnostic) for

Primary

> 's - but not for atypical AD. If you had atypical AD, the

Na:K

> ratio would be normal...... this is why you would need both - an

> Electrolyte test AND an ACTH test.

>

> I can't advise you what to do, but if you really feel as bad as you

> say you do, then don't waste time, call an ambulance and get

checked

> out .... True 's - rare as it is (only one in 100.000

people,

> they say) is a life threatening condition and needs immediate

> treatment. - but in the meantime - as Sheila said - drink,

drink,

> drink....

>

> Love - and all fingers crossed,

>

June 25, 2008

Hi everyone. Just a quick update to let you know I have now had the

Short Synacthen and am waiting for the results. The Endo's Secretary

telephoned me first thing Monday morning and asked if I would be able

to come in today. I was admitted to the Medical Assessment Unit this

morning and they did the 30 minute Short Synacthen. They could not say

how long the results will take to come back, as apparently they have

to be sent off to a Guildford Hospital. Although no Doctors actually

available until July for the procedure they actually arranged to have

a Doctor come to the ward this morning and administer the Synacthen.

He was very young and extremely nice. All of the staff we met were

very friendly and a real credit to the NHS. I felt woozy for a couple

of minutes after the Synacthen was injected but was OK after that.

Didn't feel any different to be honest. Then this afternoon around 3pm

I almost collapsed again. My head was spinning and I felt faint and

sick. I had to lie down for a while. I don't think it had anything to

do with the Short Synacthen because it was similar to how I felt

Thursday and Friday of last week. I seem unable to fight off this Hand

Foot Mouth virus, and can hardly eat as I have some huge blisters

inside my mouth. Hoping the results come through soon and that the NHS

agree to put me on hydrocortisone as soon as. Will post again when we

know the results. Thank you all for your support over the weekend.

Love

x

June 25, 2008

Hi , glad to here you're getting somewhere and you're still

with us (!), was worried about you. Ruth X

>

> Hi everyone. Just a quick update to let you know I have now had the

> Short Synacthen and am waiting for the results. The Endo's Secretary

> telephoned me first thing Monday morning and asked if I would be

able

> to come in today. I was admitted to the Medical Assessment Unit this

> morning and they did the 30 minute Short Synacthen. They could not

say

> how long the results will take to come back, as apparently they have

> to be sent off to a Guildford Hospital. Although no Doctors actually

> available until July for the procedure they actually arranged to

have

> a Doctor come to the ward this morning and administer the Synacthen.

> He was very young and extremely nice. All of the staff we met were

> very friendly and a real credit to the NHS. I felt woozy for a

couple

> of minutes after the Synacthen was injected but was OK after that.

> Didn't feel any different to be honest. Then this afternoon around

3pm

> I almost collapsed again. My head was spinning and I felt faint and

> sick. I had to lie down for a while. I don't think it had anything

to

> do with the Short Synacthen because it was similar to how I felt

> Thursday and Friday of last week. I seem unable to fight off this

Hand

> Foot Mouth virus, and can hardly eat as I have some huge blisters

> inside my mouth. Hoping the results come through soon and that the

NHS

> agree to put me on hydrocortisone as soon as. Will post again when

we

> know the results. Thank you all for your support over the weekend.

>

> Love

> x

>

June 25, 2008

Thank you Ruth. I appreciate that very much and am hanging in there.

x

>

> Hi , glad to here you're getting somewhere and you're still

> with us (!), was worried about you. Ruth X

June 25, 2008

Hi ,

Have you mixed me with the other ? I’m fine and have been for

years- I’m just trying to titrate my adrenal support to minimum/zero at

the moment. Restarting prednisone at the previous dose ( 2.5 mg every other day

soon sorted me. I’ll have another go in a few months.

As to the adrenal

spit test, the only problem I had was producing enough spit! I take a diuretic

to help with carpal tunnel syndrome ( very successfully) so have a permanently

dry mouth. Lightly chewing the straw seemed to help, before spitting through

it- so it’s not too undignified! You will get a comment with your

results, but it’s up to you who you see for treatment if it should seem necessary.

If you problem is not ian then I’d see Dr. P in your shoes.

Subject: Re:

Re: NPTech Cortisol Results through this morning. Now

I'm even more worried

Hi

,

I

really feel for you and hope you are soon well on the road to recovery. I see

you have had a full adrenal profile done at the NPTech, I have just ordered a

kit to do this myself, I am in no way as poorly as you are but I do have

Hashimotos and want to rule out any other problems. Is it easy to do and how

long do you have to wait for the results? I have suffered depression twice in

my life, the second time was bought on by my undetected Hypothyroidism and

each time being very stressful so I wonder if my adrenals have been

compromised. Do they recomend treatment if your tests prove you need it and

where would you go to get that?

I hope

you dont mind me asking you all these questions

From:

<cherimoya@...>

Subject: Re: NPTech Cortisol Results through this

morning. Now I'm even more worried

thyroid treatment

Date: Saturday, 21 June, 2008, 1:00 PM

Hi

Thanks for the info. I am hoping that the Short Synacthen will

actually show s, though like you say there is no guarantee. I

have been in touch with a couple of people who were diagnosed with

s whose 24 hour salivary tests were actually not quite as bad

as mine when they were diagnosed. Thank you so much for the links you

gave, I will take a look. I do have some DHEA ordered from

International Pharmacy when I ordered my Cortef. Haven't taken either

yet. I have also found out that it should be possible for my Endo to

prescribe an alternative corticosteroid called Dexamethasone, in the

interim, as it should not interefere with my Short Synacthen results

on the 2nd July. I have written a long letter to my Endo and GP this

morning, including all my symtoms and copies of results, and in the

letter I have asked the Endo if she can prescribe some Dexamethasone

in the interim. Whether she agrees or not is another matter

I got reading up the site about Adrenal Fatigue last night and my

graphs from NPTech look very similar indeed to stage 7, with the

reduced DHEA as well as very low cortisole. To compare I have uploaded

my NPTech results to the photo section in an album named:

Photo 1: My results from NP Tech

http://health. ph.groups. /

group/thyroidpat ientadvocacy/ photos/view/ af3d?b=1 & m=f & o=0

Photo 2: My NP Tech Graph

http://health. ph.groups. /

group/thyroidpat ientadvocacy/ photos/view/ af3d?b=2 & m=f & o=0

Photo 3: The ASI Stage Seven Graph

http://health. ph.groups. /

group/thyroidpat ientadvocacy/ photos/view/ af3d?b=3 & m=f & o=0

On the Chronic Fatigue site for stage 7 (which looks similar to my own

graph) http://www.chronicf atigue.org/ ASI%207.html it states: