D-Day

[Guest guest]

Hi everyone

Tomorrow is D-Day for me as I am finally having a synacthen test to find out

whether I have Sheehan's Syndrome. Well actually I guess that will only tell us

whether my adrenals are working properly and whether there is a problem at the

pituitary level. But it has been a long time coming. I am also having a full

suite of thyroid tests, and a full suite of antibody tests, including TSH

receptor antbodies. He is testing for B12 and intrinsic fact and parietal cell

antibodies, ACE, ANCA, ANA, as well as liver function, iron, prolactin, LH,

FSH, IGF-1, ACTH, Oestradiol etc

This endo, who hasn't met me yet has ordered these tests off my past test

results. He seems to be being very thorough. It makes a nice change from being

told I need a psychiatrist.

But sitting here tonight, I am feeling the most enormous excitement accompanied

by absolute dread. What if they find there is nothing wrong with me? What if

this is just in my head? What then?

I keep trying to comfort myself that I haven't gone hyper with Armour, and my

hydrocortisone certainly seems to make me feel better. But what if? What if

this is all in my imagination. A sad littlr manifestation of depression.

I hate the way I have so much self doubt. I hate the thought that there might

end up being a gaggle of naysayers circling me soon and saying " I told you so. "

I have just one question. I know I have to go without my hydrocortisone, but

should I also go without my Armour until the test is done? Not sure How that

will affect the results.

Sorry to be so self-indulgently sorry for myself tonight. I shall be better

soon.

Thanks for listening

'

[Guest guest]

Hi - I will keep this short and sweet.

If you are having the synacthen test tomorrow, did you stop the

HC for at least two weeks - otherwise the results will be totally flawed. If

you did not, and only stopped it the day before the test, then you need to tell

the doctors who will be carrying out this test. Be sure not to have any thyroid

medications on the morning you have your blood drawn for the thyroid function

tests, otherwise the results of these could be flawed too.

However, you don't have to stop the thyroid replacements if you

are just having the short synacthen test alone.

Luv - Sheila

I have just one question. I know I have to go without my hydrocortisone, but

should I also go without my Armour until the test is done? Not sure How that

will affect the results.

Sorry to be so self-indulgently sorry for myself tonight. I shall be better

soon.

Thanks for listening

'

[Guest guest]

Thanks Sheila

My heart sunk when I read your reply as I had not stopped the hydrocortisone,

but the doctor who supervised the test was careful to write down everything that

I had taken and when. I did not take the Armour that morning, or the HC, so

there was a 24 hour gap.

The results are in now as follows:

TSH <0.01

FT4 13.9 (9.0 - 25. pmol/L)

FT3 5.7 (3.5 - 6.5 pmol/L

FSH 58.3 (>23 IU/L)

LH 27.7 (5 -50 IU/L)

Prolactin 5.8 (<25 ug/L)

Oestradiol <60 (<120pmol/L)

Haemoglobin 126 (115 - 165 g/L)

WCC 5.1 (4.0 - 11.0)

Platelets 225 ( 150-450)

Sodium 137 (135 - 145 mmol/L)

Potassium 4.2 (3.7 - 5.3 mmol/L)

B12 269 ( >180 pmol/L)

Iron 10.4 (9.0 - 26.0 umol/L)

Transferrin 2.53 (2.10 - 3.80 g/L)

Saturation 16 (13-51%)

Ferritin 161 (15 - 200 ug/L)

9.30am Cortisol 161 (110-550 nmol/L)

9.30am ACTH 16 (<46) ( but Wikipedia says (20 - 80 pg/ml)

Synacthen Test

Basal 169 (110-550 nmol/L)

30 min 566

60 min 632

They also did a bunch of immune tests but I came back negative to parietal cell

antibodies, instrinsic factor antibodies, antinuclear antibodies and Coeliac

antibodies ( but I eat gluten free and they have suggested a second test of IgG

to be sure). However, I continue to have throid antibodies - TPO 156 (<60) and

Thyroglobulin Ab 258 (<60).

So I am not sure what to make of it, but I am assuming that my main problem is

not autoimmune, and that I haven't got pernicious anemia. although maybe I still

have another kind of aneamia?

Also, I guess that the synacthen test shows my adrenals can work, the real

question is whether they are getting a sufficient signal.

As the morning cortisol was " within range " I fear that I will be told all is

well. But the ACTH is below range, and I would have thought it should be higher

if my cortisol is in the lower part of the range?

Anyway, I head interstate to see the new specialist on the 11th of Nov. This

will be one of the longest waits of my life.

My husband is coming with me ( there is a first for everything!). So now I am

very fearful that I will be told there is nothing wrong with me and I shall have

him sitting there looking on. Ooooh....the humiliation. He is a good man, but

has had a hard time whilst I have been sick, and has understandably wondered

from time to time whether I am just a malingerer...I don't think I could bear

another humiliation of this kind.

Anyway, I am trying to stay positive and am planning everything from tennis

lessons to weight lifting soon!

In a sense, I guess I am expecting/hoping to be like new soon.

Thanks for listening, and if you have any comments on these results I'[d be

grateful.

Cheers

> Hi - I will keep this short and sweet.

>

> If you are having the synacthen test tomorrow, did you stop the HC for at

> least two weeks - otherwise the results will be totally flawed. If you did

> not, and only stopped it the day before the test, then you need to tell the

> doctors who will be carrying out this test. Be sure not to have any thyroid

> medications on the morning you have your blood drawn for the thyroid

> function tests, otherwise the results of these could be flawed too.

>

> However, you don't have to stop the thyroid replacements if you are just

> having the short synacthen test alone.

>

> Luv - Sheila

>

[Guest guest]

Hello ,

....but I am assuming that my main problem isnot autoimmune, and that I haven't got pernicious anemia.

Just a quick note, as I am a little rushed this morning....

On the contrary – your main problem IS autoimmunity. You have positive TPO and positive TgAB thyroid autoantibodies. So you do suffer from Hashimoto's disease for starters.

I don't know if you have pernicious anaemina (although I suspect that you do, and PA is yet another autoimmune condition), but your iron status is certainly not right.

Iron 10.4 (9.0 - 26.0 umol/L)Transferrin 2.53 (2.10 - 3.80 g/L)Saturation 16 (13-51%)Ferritin 161 (15 - 200 ug/L)Your ferritin is high (inflammation?), but your other iron status is pretty low. I am new to the interpretation of the other iron parameters myself, but I can see that they are too low. As I understand it, the Saturation should be 35-45% - yours is 16%. Furthermore your B12 is much too low with 269 ... it should be in the region of 900-1000.

Also, you would probably benefit from making yourself a Himalayan-sole and taking 2 teaspoons of the sole every morning – your sodium levels are a little low....- your potassium is fine, though, which is re-assuring.

As for your SST

Synacthen TestBasal 169 (110-550 nmol/L)30 min 56660 min 632

The results will not be accurate because you have taken HC, but it shows nonetheless that your adrenals are basically "in working order" – i.e. you don't appear to suffer from primary 's disease.

However –

9.30am Cortisol 161 (110-550 nmol/L)9.30am ACTH 16 (<46)

Your cortisol levels may be `in range' but they are pretty low - but this is very likely due to the fact that you are supplementing HC and had not taken your HC on the morning of the measurement. What concerns me is that your ACTH level is only 16. I do not know if this could also be due to you taking HC, but if not, then this might be something to investigate further. ACTH is produced by the pituitary gland and it is possible that this gland is malfunctioning.

In any case you are not `malingering'....

With best wishes,

[Guest guest]

Hi , im afraid all the tests related to adrenals and cortisol mean nothing

as you are on HC. As Sheila said you need to be off HC for two weeks or they are

void, the results could be missleading.

Also you do not want to be doing weighlifting or tennis really if you are still

on hc as it will put your adrenals under stress, and the idea of hc is to let

your adrenals rest and recover.

Your iron levels are quite low but your ferritin is high, which could be an

infection in the body.

You should aim for iron levels of 35% Saturation, with transferrin and serum

iron in the top half of the range.

Do stay postivie you are on the right track for sure!!

Steve

>

>

[Guest guest]

Thanks for your comments, .

>

> On the contrary – your main problem IS autoimmunity. You have

> positive TPO and positive TgAB thyroid autoantibodies. So you do suffer

> from Hashimoto's disease for starters.

I agree that I do appear to have Hashi's, but what I meant was, I was refused a

diagnosis of hypothyroidism by a number of doctors and endos because my TSH was

always low ( 1.3 -2.6). I eventually found a doctor who put me on Armour and a

lot of my problems abated somewhat. But further testing suggested adrenal

problems too. Hence the synacthen test.

I have a history of severe post partum haemorhage, so it is possible I have

Sheehan's Syndrome ( hypopituitarism). If so, that would explain the normal TSH

readings prior to going on Armour. I have a number of Sheehan's symptoms and

signs like amenorrhea since that birth 23 years ago, loss of body hair, loss of

muscle mass, abdominal obesity etc.

So I guess what I am pondering is whether it is possible to have both hashi's

and Sheehan's, or whether everything is because of the Hashi's.

>

> I don't know if you have pernicious anaemina (although I suspect

> that you do, and PA is yet another autoimmune condition),

I thought the negative result on the Parietal cell and instrinsic factor

antibodies ruled out PA?

> but your iron status is certainly not right.

> Your ferritin is high (inflammation?),

Is Hashi's considered inflammation?

>

> Also, you would probably benefit from making yourself a Himalayan-sole

I eat a lot of salt, mostly Himalyan or Maldon as I find it helps with my

constantly low blood pressure......usually around 100/60 but often down to

90/50.

>

> As for your SST

> Your cortisol levels may be `in range' but they are pretty low

> - but this is very likely due to the fact that you are supplementing HC

Is 8 mg a day sufficient to suppress the ACTH?

> ACTH is produced by the pituitary

> gland and it is possible that this gland is malfunctioning.

And that is the million dollar question!!

>

> In any case you are not `malingering'....

Thankyou . This has been a difficult time as like so many others here

I have been told over and over that there is nothing wrong with me. It gets to

you after a while.

Cheers

[Guest guest]

Thanks for your comment Steve

> Hi , im afraid all the tests related to adrenals and cortisol >mean

nothing as you are on HC. As Sheila said you need to be off HC >for two weeks or

they are void, the results could be missleading.

If the synacthen test shows the adrenals work well under artificial

stimulation....isn't it really a question of whether they are getting enough

ACTH naturally......ie is the pituitary working properly? I have been on 8mg

hydrocortisone a day ( split 4mg doses) I had thought such low doses would not

suppress the ACTH? So I am now not sure what to make of things. Was the ACTH

already low, or have I suppressed it with 8mg of ACTH a day?

>

> Also you do not want to be doing weighlifting or tennis really if you are

still on hc as it will put your adrenals under stress, and the idea of hc is to

let your adrenals rest and recover.

There is no risk of me playing any tennis or lifting weights at the moment. I

have trouble getting up each day! But a girl has to dream.

Thanks again

Cheers

[Guest guest]

Sorry the ACTH is a bit out my league at the moment. But 4mg x2 is a very low

dose of HC. Do you need this much have you felt any benefit ? By taking 8mg you

are not supressing your adrenals you are right but this means you are not really

giving them time to rest/heal which is the aim with hc. But 8mg can be nice to

make up that of which your own adrenals are lacking if indeed it is just 8mg

short. But that is not really healing.

So it depends what you want to achieve with hc what is your aim ?

Steve

>

[Guest guest]

I was put on HC by the same doctor that gave me the Armour, I think because of

the risk that I had more going on than the thryoid problem. I feel dreadful

with the current level of HC and even worse without it at all.

So it is not so much that I am trying to rest anything, as much as taking it to

ensure that nothing more goes wrong whilst I am taking the Armour. In fact the

Synacthen test suggests that the adrenals themselves are fine, but that they

might not be getting enough signal from the pituitary....I think. Not sure

though, and driving myself totally spare trying to research it.

I see the doctor in 13 days.....so I will probably just have to cool my heels

and see what he has to say. It is so hard after so many years of trying to get

this sorted. Situation normal for everyone here, so I shall stop whingeing.

cheers

>

> Sorry the ACTH is a bit out my league at the moment. But 4mg x2 is a very low

dose of HC. Do you need this much have you felt any benefit ? By taking 8mg you

are not supressing your adrenals you are

[Guest guest]

Hello ,

Sorry, I was in a rush yesterday and did not have a chance to check if HC might suppress ACTH production. According to the below information is does so indeed.....however, only in supraphysiological doses -

http://www.endotext.org/adrenal/adrenal14/adrenalframe14.htm

Adrenal insufficiency results from inadequate adrenocortical function, which may be due to destruction of the adrenal cortex (primary adrenal insufficiency; 's disease), deficient pituitary ACTH secretion (secondary adrenal insufficiency), or deficient hypothalamic secretion of CRH or other ACTH secretagogues (tertiary adrenal insufficiency). Primary and secondary adrenal insufficiency related to natural causes is uncommon, whereas iatrogenic, tertiary adrenal insufficiency caused by suppression of Hypothalamic-Pituitary-Adrenal (HPA) function by glucocorticoid administration is common. Glucocorticoid treatment may not suppress the HPA axis at all, or it may cause central suppression or complete adrenal gland atrophy. Supraphysiologic glucocorticoid doses inhibit both CRH production by the hypothalamus and ACTH production by the pituitary gland. When this inhibition lasts longer than the duration of the glucocorticoid exposure, it is called adrenal suppression.

..... the amount of HC you are taking is absolutely minimal. I did not know yesterday that you were only taking 2 x 4 mg of HC..... I even doubt that supplementation of 8 mg HC per day will have a significant influence on the validity of of your SST result, although I can't rule it out with any confidence.

Assuming that the SST result has not been influenced to a large degree, your results show that your baseline cortisol is borderline low, most likely because your ACTH production is also too low. Your adrenal function, however, reacts normally to the challenge of an ACTH injection. This only leaves IMO one conclusion.... your pituitary gland is malfunctioning. To this end I would imagine that your doctor should order an MRI scan to rule out a pituitary adenoma and I am sure there are other tests that can be done to check for other reasons of abnormal pituitary function.

I agree that I do appear to have Hashi's, but what I meant was, I was refused a diagnosis of hypothyroidism by a number of doctors and endos because my TSH wasalways low ( 1.3 -2.6).

Then those doctors were wrong. The mere presence of thyroid autoantibodies (whether TPO or TgAB or a combination of both) is diagnostic for Hashimoto's disease, regardless of thyroid blood parameters. Wildly fluctuating thyroid results (in particular TSH, but this goes equally for the FT's, is one of the hallmarks of Hashimoto's and the main reason a diagnosis is often missed.

Furthermore you mentioned Sheehan Syndrome, which – if confirmed - equally might account for your "low-normal" TSH. I do not suppose that having Hashimoto's rules out Sheehan's.

http://www.medscape.com/viewarticle/405874_3

Secondary hypothyroidism is clinically indistinguishable from primary hypothyroidism, but patients with hypothyroidism caused by hypopituitarism have low T3 and T4 levels with normal or even inappropriately low TSH levels.

I thought the negative result on the Parietal cell and intrinsic factor antibodies ruled out PA?Sorry, I can't say, I have not done any research into PA – but I can see that your body is lacking iron, despite the high ferritin. Your Saturation% is too low and your unbound iron is too low. High ferritin can mean chronic inflammation.... and that could be any kind of inflammation, Hashi's included if there were constant attacks on the thyroid gland.

I hope that your current doctor has got the knowledge and wisdom to do further checks on your pituitary's involvement.... and don't forget to attend to your iron status – it ain't "right", even if it were not PA.

With best wishes,

[Guest guest]

Hello

Do you think you may not be on enough HC?

>I feel dreadful with the current level of HC and even worse without it at all.

I had an ACTH test done while on 30mg HC, and was told to stay off it for the

afternoon i think. Ie, if I had the test done on Tuesday, on monday instead of

taking 20mg hc in the morning, and 10 mg in the evening, i think i took 20mg in

the morning. My ACTH level was 18.1 and i was told anything less than 46ng/L

was 'normal'. I don't have a pre HC result to compare it to, though.

> So it is not so much that I am trying to rest anything, as much as taking it

to ensure that nothing more goes wrong whilst I am taking the Armour. In fact

the Synacthen test suggests that the adrenals themselves are fine, but that they

might not be getting enough signal from the pituitary....I think. Not sure

though, and driving myself totally spare trying to research it.

Well, I was told by a doctor recently I had a sluggish pituitary and given

medrol as HC doesn't seem enough for me. Perhaps your pituitary isn't working

as hard as it should be? Some doctors seem to think we are like binary systems

- on or off, but it seems we are more analogue and can be partly off!

> I see the doctor in 13 days.....so I will probably just have to cool my heels

and see what he has to say. It is so hard after so many years of trying to get

this sorted. Situation normal for everyone here, so I shall stop whingeing.

You're not whingeing, please don't think that. No one thinks that. I know how

hard it can be when you feel so unwell and have to wait, 13 days can seem like

forever. it'll soon be here though. hang in there.

Have you looked at this site?

https://eaware.org/adrenal-glands/?doing_wp_cron#Low Cortisol

it seems quite helpful

chris

[Guest guest]

Thankyou . That is very helpful. I just went back through my test

results over the last few years, and I have been having low ACTH well before I

started taking HC in June this year. So I guess that is closing the loop back

to hypopit.

I have read for so many hours and not been able to find this info. I am really

grateful for your help, as I am starting to feel addled and anxious. I shall

now try to wait for the Endo to have his say. I am in Australia, and having to

travel several thousand kilometres to see him, but this chap is highly regarded,

so I am hopeful that I am near help.

Cheers

......who is now going off to read some more on this.....it is like an

addiction!

>

>

> HC might suppress ACTH production. According to the below information is

> does so indeed.....however, only in supraphysiological doses -

>

>

[Guest guest]

Hi Chris

Yes I think it is entirely possibly, maybe even likely, that I am not on enough

HC....maybe also not enough Armour. But I am not game to change anything now

that I am so close to seeing the endo.

Some days when it gets too bad, I have taken an extra 4mg, but I wouldn't say

that exactly puts a spring in my step.

>

> Some doctors seem to think we are like binary systems - on or off, but it

seems we are more analogue and can be partly off!

I just love this description!!!!

>

> I know how hard it can be when you feel so unwell and have to wait, 13 days

can seem like forever. it'll soon be here though. hang in there.

Thanks Chris. It is a lot easier with this group to talk to!

>

>

> Have you looked at this site?

https://eaware.org/adrenal-glands/?doing_wp_cron#Low Cortisol

>

> it seems quite helpful

Thanks for that link. I haven't seen it before. It looks very helpful.

Cheers

>

> chris

>

[Guest guest]

Hi ,,,, your TPOab is out of range, this is hashimoto`s disease. the T4 could be a bit higher in the range and the T3 also, but it looks like you are converting OK. demand treatment and don`t take no for an answer. the range in only that, anything over say 20 TPOab) is positive and it is unusual to have higher than your thyroid auto-antibodies of thyroglobulin. ummmm. angel.