Re: tsh less than 0.001

[Guest guest]

Hi Sian,

Your doctor is only doing half a job and also trying to do the impossible.

If she measures your Thyroid Stimulating Hormone she will find it is low, or

none existant because you have thyroid hormones in your body and the thyroid

does not need to be stimulated. She is hoping to let you have thyroid

hormones and then miraculously your tsh will not fall......

If she believes that the reason your tsh is very low is because you have too

much thyroid hormone, then she should measure that hormone.... How does she

know whether you have too much t4 or t3 and how does she know that the

feedback loop is working perfectly?

If you look in the files and scroll down to the Pulse article, you will see that

Endocrinologist Toft advises that a low TSH is fine so long as free t3

is not over range.....

You could also show her this article in the bmj which says that tsh is a poor

measure....http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1125164/

x

>

> hi all

> for about a year now the new female doc at my surgery has been reducing the

synthetic t4 and insisting i reduce the erfa i self medicate with because my tsh

is less than 0.001

[Guest guest]

thank you for replying amanda

i read the pulse file but in the answer to question 6 it states that

" While taking both hormones it is important serum TSH is normal and not

suppressed. "

so i am confused now.

[Guest guest]

Your GP is an idiot. Hasn't she even bothered to learn what TSH

is. TSH is Thyroid Stimulating Hormone. It is produced by the pituitary gland

when the hypothalamus detects that there is insufficient thyroid hormone in the

blood. The TSH then nudges the thyroid gland into producing MORE thyroid

hormone, so the TSH rises. BTW - whenever you have thyroid function tests, stop

thyroid hormone the day before and do not take any on the morning you have your

blood drawn for such tests.

OK , so here is a draft letter you might be able to make use

of:

Dear Dr ****

I am extremely unhappy that you appear to be reducing my

levothyroxine and insisting that I also reduce my natural thyroid extract (Erfa

'Thyroid') based on TSH results alone., especially when I am not suffering with

symptoms and feel well on my present dose. I am unhappy because it

is well known that when a patient is taking thyroid hormone replacement, the

pituitary gland recognises when there is either sufficient or insufficient thyroid

hormone in the blood and TSH is secreted (or not) to nudge (or not) the thyroid

gland into producing more hormone. When there is sufficient thyroid hormone in

the blood, as in my own case, the pituitary has no need to secrete any TSH and TSH

will naturally remain suppressed.

TSH is insufficient to check thyroid hormone function and it is

recommended by the BTA, ACB and RCP that a measure of free T4 should also be

tested. I would therefore, like my free T4 and free T3 tested to check their

levels. As I have been taking natural thyroid hormone for several years and

feel very well on it, and my symptoms have now diminished considerably, I will

not be putting my health at further risk by reducing either my levothyroxine or

Erfa Thyroid and hope that you will understand my reasoning behind this. My

free T4 is likely to be very low, my free T3 is likely to be high, in the upper

third of the reference range, and probably right at the top of the range, and my

TSH is expected to be completely suppressed, but these are normal results for

those taking any form of the active thyroid hormone T3, either synthetic or

natural.

I wish to continue with my present dose of medication, but

please be assured, that should I ever, at any time, suffer any adverse

reaction, I will contact you with immediate effect and, at that time, if the

adverse reaction is found to have been caused by taking too much thyroid

hormone, I will then reduce the dose until I fill well again.

I sincerely hope that you will work with me here.

Please will you place my letter into my medical records?

Kind regards

hi all

for about a year now the new female doc at my surgery has been reducing the

synthetic t4 and insisting i reduce the erfa i self medicate with because my

tsh is less than 0.001

i am now on 50mcg t4 and 125mg erfa.

i have social anxiety so am barely able to even say hello to her.

is there a letter i can send her?

i have looked through the files but am findin dificulty concentrating

should she be doing ft3 and ft4 as well?

i have to go back for another blood test in 8 weeks.

any help greately apreciated#

sian

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[Guest guest]

thank you Sheila that sounds really good

[Guest guest]

PLEASE MAKE SURE YOU REMOVE ALL PREVIOUS MESSAGES (APART FROM A FEW LINES FROM

THE MESSAGE YOU ARE REPLYING TO) BEFORE CLICKING REPLY. I HAVE DONE IT THIS

TIME.

Moderator.

There is are two technical issues as well. First, the TSH test depends upon the

pituitary functioning properly.

Second, deficiencies in the post thyroid realm that exists between the thyroid

gland and the symptom producing cells, i.e., peripheral metabolism, peripheral

cellular hormone reception, and intracellular function, can also cause the

symptoms of hypothyroidism. Additionally, these deficiencies divorce, to

various degrees, the ability of TSH to predict the body's condition relative to

the thyroid related hormones.

My wife had a TSH of .002 but displayed no hyper symptoms. Curiously, a friend

of hers has the opposite issue. Must have a TSH of about 60 but does not

present hypo symptoms.

Have a great day,

>

> Your GP is an idiot. Hasn't she even bothered to learn what TSH is. TSH is

> Thyroid Stimulating Hormone. It is produced by the pituitary gland when the

> hypothalamus detects that there is insufficient thyroid hormone in the

> blood. The TSH then nudges the thyroid gland into producing MORE thyroid

> hormone, so the TSH rises. BTW - whenever you have thyroid function tests,

> stop thyroid hormone the day before and do not take any on the morning you

> have your blood drawn for such tests.

>

> OK , so here is a draft letter you might be able to make use of:

>

>

>

> Dear Dr ****

>

> I am extremely unhappy that you appear to be reducing my levothyroxine and

> insisting that I also reduce my natural thyroid extract (Erfa 'Thyroid')

> based on TSH results alone., especially when I am not suffering with

> symptoms and feel well on my present dose. I am unhappy because it is well

> known that when a patient is taking thyroid hormone replacement, the

> pituitary gland recognises when there is either sufficient or insufficient

> thyroid hormone in the blood and TSH is secreted (or not) to nudge (or not)

> the thyroid gland into producing more hormone. When there is sufficient

> thyroid hormone in the blood, as in my own case, the pituitary has no need

> to secrete any TSH and TSH will naturally remain suppressed.

>

>

[Guest guest]

Let us know what response you get from this GP Sian.

Luv - Sheila

thank you Sheila that sounds really good

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[Guest guest]

i didn't really understand your message (too thick sorry)

but thanks for replying.

>

> There is are two technical issues as well. First, the TSH test depends upon

the pituitary functioning properly.

>

> Second, deficiencies in the post thyroid realm that exists between the thyroid

gland and the symptom producing cells, i.e., peripheral metabolism, peripheral

cellular hormone reception, and intracellular function, can also cause the

symptoms of hypothyroidism. Additionally, these deficiencies divorce, to

various degrees, the ability of TSH to predict the body's condition relative to

the thyroid related hormones.

>

> My wife had a TSH of .002 but displayed no hyper symptoms. Curiously, a

friend of hers has the opposite issue. Must have a TSH of about 60 but does not

present hypo symptoms.

>

> Have a great day,

>

[Guest guest]

will do, thou it will be about 2 months.

i have gone back up to 2 erfa tablets, i found i could not cope on just 1. I

haven't been able to answer the door to the postman twice this week but usually

i can and i am so tired.

>

> Let us know what response you get from this GP Sian.

>

> Luv - Sheila

>

>

> thank you Sheila that sounds really good

>

>

>

> _____

>

> No virus found in this message.

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>

[Guest guest]

You did right to increase your Erfa, and if necessary in around

3 weeks time, increase by another half grain if you feel the need. Doctors go

titrate thyroid hormone replacement according to thyroid blood test results

only and do not take into account a patient's symptoms or signs. You need to

look after yourself Sian - you are the one who is suffering.

Good luck

Luv - Sheila

will do, thou it will be about 2 months.

i have gone back up to 2 erfa tablets, i found i could not cope on just 1. I

haven't been able to answer the door to the postman twice this week but usually

i can and i am so tired.

>

> Let us know what response you get from this GP Sian.

>

> Luv - Sheila

>

>

> thank you Sheila that sounds really good

>

>

>

> _____

>

> No virus found in this message.

> Checked by AVG - www.avg.com

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>

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[Guest guest]

Hi all

I sent the letter to my doctor (thou I did change it so it sounded more

respectful) and the surgery phoned to say she wanted to see me

She was very nice and said she would request the t4 test and a cortisol test. I

told her that I felt better when my t4 was around 22 and she said she would

increase my meds if the test showed it was below that.

I had the results today:

cortisol = 98 nmol/L morning range 138-635

tsh < 0.01 mu/L no range given

the following results were also on the printout but I don't know why and they

didn't have any ranges next to them either:

urea level = 4.4 mmol/L

sodium = 143 mmol/L

potassium = 4.2 mmol/L

creatinine = 55 umol/L

chloride = 105 mmol/L

nothing on the printout about ft4 so she won't be able to increase my meds.

I am seeing her again on the 6th, my question is

do I need to say anything to her about my cortisol level?

thanks

sian

>

> Your GP is an idiot. Hasn't she even bothered to learn what TSH is. TSH is

> Thyroid Stimulating Hormone. It is produced by the pituitary gland when the

> hypothalamus detects that there is insufficient thyroid hormone in the

> blood.

[Ed]

[Guest guest]

Hi Sian

Yes, talk to your GP about your below range early morning

cortisol. At that hour, cortisol should be at it's highest in the range to help

you get through the daily chores.

Also, point out to her that the British Thyroid Association and

the Association of Clinical Biochemists state categorically in their

Thyroid Function Test Guidelines 2006, that TSH and a measure of free T4

should be tested. If she requested the free T4 was tested and it was the local

laboratory who refused to do this test, she should point out to them that they

are breaking the guidelines and also, they are not the doctor who needs to know

what the result is. One cannot tell whether the mainly inactive thyroxine

is converting to the active T3 by checking TSH (which is a pituitary hormone)

only.

I would ask your GP how she is able to tell whether your other

results are normal without a reference range. How can she tell whether you are

at the bottom, the middle, the top, or even outside the bottom or the top of

the reference range? This is very serious if she is not being given the

reference range. On the other hand, if she is being guided by the laboratory

who are implying that all of your results are 'normal' because they are within

the given reference range, she should not be. I would insist on getting the

reference ranges yourself, even if you have to telephone the hospital

laboratory and asking them what reference ranges they use for each of their

tests.

Mind you having said that, I realise that you used to have a

telephone phobia, but not sure whether you have now got over this. If you have

not Sian, then write a short letter and post to the Head of Pathology to your

local hospital and ask that they let you know what these are. You can put a

stamped addressed envelope in to help them if you wish.

Let us know how you get on after seeing your GP on the 6th.

Luv - Sheila

Hi all

I sent the letter to my doctor (thou I did change it so it sounded more

respectful) and the surgery phoned to say she wanted to see me

She was very nice and said she would request the t4 test and a cortisol test. I

told her that I felt better when my t4 was around 22 and she said she would

increase my meds if the test showed it was below that.

I had the results today:

cortisol = 98 nmol/L morning range 138-635

tsh < 0.01 mu/L no range given

[Guest guest]

cortisol = 98 nmol/L morning range 138-635tsh < 0.01 mu/L no range giventhe following results were also on the printout but I don't know why and they didn't have any ranges next to them either:

urea level = 4.4 mmol/Lsodium = 143 mmol/Lpotassium = 4.2 mmol/Lcreatinine = 55 umol/Lchloride = 105 mmol/L

Hello Sian,

Please tell me... are you on any kind of steroids or adrenal support (HRT, HC, Prednisolone, sex hormones or Nutri Adrenal Extra) ?

If you were taking any of the above, then that might change the picture completely, but if you were not taking anything, then my guess would be that the lab has done the above tests because your morning serum cortisol level is extremely low, and that could indicate 's disease. – However, without having the ref ranges, it is difficult to say, but to my mind the above electrolyte figures look normal and do not suggest primary 's, although secondary 's (failure of hypothalamic or pituitary function) might be a possibility...

http://www.merckmanuals.com/professional/endocrine_and_metabolic_disorders/adrenal_disorders/secondary_adrenal_insufficiency.html?qt= & sc= & alt=

Symptoms and Signs

Symptoms and signs are similar to those of 's disease (see Adrenal Disorders: Symptoms and Signs). Differentiating clinical or general laboratory features include the absence of hyperpigmentation and relatively normal electrolyte and BUN levels; hyponatremia, if it occurs, is usually dilutional.

Patients with panhypopituitarism have depressed thyroid and gonadal function and hypoglycemia, and coma may supervene when symptomatic secondary adrenal insufficiency occurs. Adrenal crisis is especially likely if a patient is treated for a single endocrine gland problem, particularly with thyroxine, without hydrocortisone replacement.

Could you let us know please if you are taking any steroids, sex hormones or are on adrenal support of any kind?

With best wishes,

[Guest guest]

Hi

thanks for replying.

I take two nutri adrenal extra.

sian

>

>

> cortisol = 98 nmol/L morning range 138-635

> tsh < 0.01 mu/L no range given

[Guest guest]

hi sheila

thanks for replying

yes i still have social anxiety so don't like

talking to people in person or on phone

major pain in the backside!

what should the doc be doing about the low cortisol?

thanx

sian

>

> Hi Sian

>

> Yes, talk to your GP about your below range early morning cortisol. At that

> hour, cortisol should be at it's highest in the range to help you get

> through the daily chores.

>

[Guest guest]

I take two nutri adrenal extra.....

I am seeing her again on the 6th, my question isdo I need to say anything to her about my cortisol level?

Hello again, Sian,

Yes, most definitely! It should, actually, have been the other way round... your GP should have taken the initiative straight away when seeing your figures and given you a blood form to repeat the morning serum cortisol test. Your morning serum cortisol (on this occasion) was extremely low, which is presumably why the lab did a check on your electrolytes and kidney function. Those – as far as I can see – were normal. Had they not been normal, there would have been a high possibility of primary 's with cortisol levels are low as yours; but since those parameters were normal, it now needs checking out if you have pituitary malfunction. But first of all your cortisol levels need to be re-checked... those extremely low levels might have been a fluke.

If a re-check of morning cortisol comes back again with figures around or under 100 nmol/L, then you might need a short synacthen stimulation test (SST) PLUS your serum ACTH levels checked and if there were evidence for pituitary malfunctioning, you would need further tests, possibly an MRI scan.

Let me explain:

Our pituitary glands produce and push out a hormone called ACTH. This ACTH stimulates our adrenal glands into producing cortisol and as you know, we all need sufficient cortisol to live.

If for some reason the pituitary glands malfunction, they might produce too little ACTH, and the adrenals glands will consequently only produce what is asked of them... little ACTH means little cortisol/cortisone production.

During an SST stimulation test initially blood is taken to check the amount of ACTH as well as the amount of cortisol in the blood, and then they inject you with an ACTH hormone and measure your adrenal response to that 30 minutes later. Since in case of `secondary 's' there is basically nothing wrong with the adrenals ability to produce cortisol, you would get a good production of cortisol in response to the ACTH stimulation. This would prove that the fault lies with the pituitary gland or hypothalamic/pituitary axis and it then needs further tests to determine what's wrong.

Just for clarification – there is a big difference between primary and secondary 's. Primary AD means irreparable damage to the adrenal glands themselves. Secondary AD means the adrenal glands are ok, but the pituitary gland is malfunctioning for some reason.

The main test for both conditions is initially the same – an SST.... but presumably before ordering an SST first of all it needs to be established if your extremely low cortisol reading had been a fluke or if your cortisol levels are really that low – so you need a re-test ASAP.

http://www.merckmanuals.com/professional/endocrine_and_metabolic_disorders/adrenal_disorders/secondary_adrenal_insufficiency.html?qt= & sc= & alt=

The above link is from the "Merck", which is a professional medical reference book. It is a bit technical, but in essence says what I put in layman terms above.

Since you are not on any steroid or sex hormone replacement (the two NAX that you are taking are not steroids and they would not measurably influence your cortisol result) chances are high that your low cortisol figure was "true" .... and with a level that low you need to get checked out what's going on.

I would suggest you write to your GP and question her about the low cortisol level – suggest a re-test first of all. If this comes back equally low, then ask for an SST including a serum ACTH test and hopefully things will become a little clearer then. – If your GP refuses (which would be very stupid), then ask for a referral to an endo. Cortisol levels as low as that are serious and your GP should be aware of that.

If you have pituitary malfunctioning, then without further treatment (depending on the cause for the pituitary malfunction) no amount of thyroid hormone will work and it will be impossible for you to stabilize your hormone levels.

I hope this helps. If any of the above is unclear, please don't hesitate to ask.

With best wishes,

[Guest guest]

thanks for all that

my cortisol was checked a few years ago and it was 78

but the dr didn't say anything about it.

i presume it has gone up because of the nutri adrenal extra

>

>

> I take two nutri adrenal extra.....

>

> I am seeing her again on the 6th, my question is

> do I need to say anything to her about my cortisol level?

>

>

>

> Hello again, Sian,

>

> Yes, most definitely! It should, actually, have been the other way

> round... your GP should have taken the initiative straight away when

> seeing your figures and given you a blood form to repeat the morning

> serum cortisol test. Your morning serum cortisol (on this occasion) was

> extremely low,

[Ed]

[Guest guest]

> my cortisol was checked a few years ago and it was 78> but the dr didn't say anything about it.> i presume it has gone up because of the nutri adrenal extra

Hi Sian,

Are you sure that it was THAT low (and measured in nmol/L) ?? Cortisol levels do change constantly during the day, but it should be highest in the mornings and anything below 150 nmol/L at an early hour should make a doctor sit up straight; anything below 100 nmol/L is 'red alert' and needs further investigation - so what is your GP doing?! Does she think just because the electrolytes were ok, there is nothing wrong?

Do ask for a referral to an endocrinologist of your own choice, Sian.... if your cortisol levels are consistently low but your electrolyte and kidney function is normal (as it seems to be the case with you), there is a real risk of your pituitary gland not working properly and they need to find out why. She should order further tests. Do write to her again, Sian, and make the point that your morning serum cortisol levels are well below the ref range and that you want it investigated. Refer her to the link in the Merck manual, if necessary - would do her good to refresh her memory a little!

Have you ever done a private salivary adrenal profile to see where your cortisol levels are during the rest of the day? It would be good to know the pattern. I am assuming that at some stage during the day your cortisol levels are rising much higher than in the mornings.... I can't see how on earth you'd get through a day otherwise. How are you actually feeling?

Best wishes,

[Guest guest]

hi christina

yes it was that low and measured in nmol/L, i still have the printout but the

ref range was different 100-680 instead of 138-635

you asked how i feel

every day is a struggle, i am merely existing so my boys will have somewhere to

live.

i don't have the energy to do anything or go anywhere, my mum is 74 and she

cooks most of our meals.

i used to be a systems analyst/programmer and was able to stand before a room

full of people and present a computer system i had designed and written but now

i have difficulty saying hello to the postman.

we survive on benefits so i haven't had the 24hr test done

but i will if i get no joy with my doc on tuesday.

sorry for the rant

> > my cortisol was checked a few years ago and it was 78

> > but the dr didn't say anything about it.

> > i presume it has gone up because of the nutri adrenal extra

>

>

> Hi Sian,

>

> Are you sure that it was THAT low (and measured in nmol/L) ?? Cortisol

> levels do change constantly during the day, but it should be highest in

> the mornings and anything below 150 nmol/L at an early hour should make

> a doctor sit up straight; anything below 100 nmol/L is 'red alert' and

> needs further investigation - so what is your GP doing?! Does she think

> just because the electrolytes were ok, there is nothing wrong?

>

> Do ask for a referral to an endocrinologist of your own choice, Sian....

> if your cortisol levels are consistently low but your electrolyte and

> kidney function is normal (as it seems to be the case with you), there

> is a real risk of your pituitary gland not working properly and they

> need to find out why. She should order further tests. Do write to her

> again, Sian, and make the point that your morning serum cortisol levels

> are well below the ref range and that you want it investigated. Refer

> her to the link in the Merck manual, if necessary - would do her good to

> refresh her memory a little!

>

> Have you ever done a private salivary adrenal profile to see where your

> cortisol levels are during the rest of the day? It would be good to know

> the pattern. I am assuming that at some stage during the day your

> cortisol levels are rising much higher than in the mornings.... I can't

> see how on earth you'd get through a day otherwise. How are you actually

> feeling?

>

> Best wishes,

>

>

>

[Guest guest]

Hi,

my TSH is <0.01 and has been ever since May 2007, after 4 weeks on armour. I

have since been through a pregnancy, no change in TSH whatsoever, on T4 only

(no NDT) with no change in TSH, combo T4 and T3, no change. I am now on T3

only, and my last set of results were:

tsh <0.01

T4: 5 (7-21)

FT3: 3.8 (3.8-6.2)

No matter how much or how little meds I take, my TSH never changes. I have lost

count of the number of times I have told different doctors that that is normal

for me and never changes despite my dose and as I'm pretty firm (and take a list

of my test results showing this if I'm seeing a different doc) they eventually

take me at my word and adjust my dose based on my T4 and T3 numbers and how I'm

feeling.

I think it may just have to be a case of being firm and saying 'this is normal

for me, can we move on and look at the other numbers and how I'm feeling " .

>

> hi all

> for about a year now the new female doc at my surgery has been reducing the

synthetic t4 and insisting i reduce the erfa i self medicate with because my tsh

is less than 0.001

>

[Guest guest]

you asked how i feel every day is a struggle, i am merely existing so my boys will have somewhere to live. i don't have the energy to do anything or go anywhere, my mum is 74 and she cooks most of our meals.i used to be a systems analyst/programmer and was able to stand before a room full of people and present a computer system i had designed and written but now i have difficulty saying hello to the postman.we survive on benefits so i haven't had the 24hr test donebut i will if i get no joy with my doc on tuesday.sorry for the rant

You rant all you like, Sian! You have every reason to. You have been terribly neglected by the medical profession. When I first read about your social phobia and your low cortisol levels alarm bells went off in my head... and if they go off in my head, then why don't they go off in your GP's?! She has you in front of her and all your medical history on the screen, for goodness sake!

Low cortisol levels (as well as high cortisol levels) can do strange things to our body and mind, and I would not mind betting that your social phobia and low cortisol levels are closely linked. If anyone suggests to you mental problems and antidepressants or any such things, tell them where they can stick their precious drugs.

I know, this must be extremely difficult to do in your current situation, but you need to get the message through to your GP that she has to get to the bottom of your low cortisol levels and perhaps not just check morning serum cortisol, but give you the full Monty, including a short synacthen stimulation test (SST) and - most importantly (!) - the SST has to include serum ACTH. I am not sure if a serum ACTH test can be done on its own... I guess it can, but it would be best to do it in conjunction with an SST, because then primary 's can (hopefully) be ruled out and they can check for secondary 's at the same time.

I am labouring the point about Serum ACTH, because it is a specialized test and it is best done under clinical conditions. For this test the blood has to be drawn, the vial put on ice and taken straight through to the lab for instant attention.... so the clinician needs to know beforehand that this test is asked for as well as an ACTH stimulation test. I would not necessarily expect your GP to know about this, hence making sure that both, SST and serum ACTH, are listed on the order form. It is the serum ACTH result that – if low – would determine pituitary problems.

I just realized that you are seeing your GP in a couple of days - so all the better. Would it be possible for your mum or a friend to come with you for moral support? Doctors are usually more careful with what they say when there is somebody else in the room – and you need to make it crystal clear to your GP that you now want to get to the bottom of what is going on.

I do not want to overload you with information until your eyes cross over, but the fact that your cortisol level is that low, combined with the way you feel, is pretty significant.

At very best your circadian rhythm is totally out of synch and your adrenal function is inadequate – or in other words, your adrenals are knackered to the point of insufficiency. This is something very few doctors will recognize as a `condition' – but that would not matter. There are ways you can help yourself. You just need to be certain that this is indeed what is causing your low cortisol. As I said – this would be your best case scenario.

But your low cortisol output might be down to either primary or secondary 's and this is why you need an SST (also called ACTH stimulation test). Judging by your other lab results, primary 's is IMO unlikely, but secondary 's – the failure of the pituitary function – is a possibility.

With cortisol levels like yours, there is little doubt that you need Hydrocortisone (unless a growth on the pituitary gland is the culprit), but it would be wrong to start with that until you have had all the necessary tests (on NHS) and you know where you stand. Taking any kind of steroid now would ruin your chances of determining the underlying cause for your low cortisol levels.

When you see your GP on Tuesday, please tell her that you are extremely concerned about your health (always a good line to take, because it takes the wind out of the doctor's sails and is a reminder for her or him of their `duty to care') and in particular you are concerned about your low morning cortisol levels and that in combination with all your other clinical signs and symptoms adrenal or pituitary malfunction needs to get ruled out. You have 3 children to look after and you are so ill that you have trouble getting through each day without the help of your elderly mother. This can't go on, and you want her to order (pleeeease) an ACTH stim test AND concurrently a serum ACTH test NOW [...or else ; which means a letter of complaint to the practice manager] . It would be good if you had someone with you in the room, so that the GP can't give you the brush-off. You may have to be very insistent... your GP appears to be totally unaware of just how low your cortisol levels are, or she would have picked up on that straight away. Make it crystal clear that you mean business.... again, I realize just how difficult this will be in your current situation, but perhaps someone else can speak for you?

I hope you will achieve to get those tests ordered, and when you have, I'll give you a few tips for the day of testing. And please don't be scared about an SST... chances are that you will feel wonderful afterwards and your body will rejoice with all this lovely cortisol pumping through your veins ;o)

With warm wishes,

[Guest guest]

Dear

Sian

I

absolutely second everything that has recommended. If you cannot

remember everything for your appointment on Tuesday, make a note to give your

GP of the tests you need and give it to your GP. Tell her that with such a low

level of cortisol in the morning, you are very concerned that you may be

suffering with secondary adrenal insufficiency. You need a Short Synacthen Test

(SST) together with the Adrenocorticotropic Hormone (ACTH). .

The

short synacthen test is done first thing in a morning. You attend the hospital

where your blood is taken on arrival. After half an hour, they give you an injection

of Synacthen and then test your blood again in another half hour, and probably

the half hour after that to see whether your cortisol level has responded

positively. See http://labtestsonline.org/understanding/analytes/acth/tab/test

to see how your ACTH is tested.

Good

luck Sian, and let us know what happens on Tuesday and I hope your Mum, or a

friend can go with you as this would help.

Luv

- Sheila

Low cortisol levels

(as well as high cortisol levels) can do strange things to our body and mind,

and I would not mind betting that your social phobia and low cortisol levels

are closely linked. If anyone suggests to you mental problems and

antidepressants or any such things, tell them where they can stick their

precious drugs.

[Guest guest]

thank you all for the advice and thank you for your concern, it brought tears to

my eyes.

my mum is coming to the docs with me but she doesn't understand any of this. she

had a thyrodectomy over 40 years ago but it is only recently that they put her

on a low dose of t4!

i have written the following letter and would like to make sure i have got it

right:

Dear Dr C Parkes,

I am very concerned about my health and in particular I am

concerned about my low morning cortisol levels. Would you please

investigate further to ascertain if this is due to a problem with my adrenals,

pituitary or hypothalamus. Would it be possible for me to have a short synacthen

stimulation test and concurrently a serum ACTH test?

For some reason the FT4 test was not done last week.

Kind regards

i'm afraid i have been on max dose of antidepressants for 5 years. i

recently managed to get off the diazepam and sleeping tablets thou.

anyway i will see what happens on tuesday.

thanks again

sian

[Guest guest]

That's excellent Sian, and well done. Do let us know the

outcome, and the very best of luck to you. Let's hope for a positive result.

Luv - Sheila

thank you all for the advice and thank you for

your concern, it brought tears to my eyes.

my mum is coming to the docs with me but she doesn't understand any of this.

she had a thyrodectomy over 40 years ago but it is only recently that they put

her on a low dose of t4!

i have written the following letter and would like to make sure i have got it

right:

Dear Dr

I am very concerned about my health and in particular I am

concerned about my low morning cortisol levels. Would you please

investigate further to ascertain if this is due to a problem with my adrenals,

pituitary or hypothalamus. Would it be possible for me to have a short

synacthen stimulation test and concurrently a serum ACTH test?

For some reason the FT4 test was not done last week.

Kind regards

i'm afraid i have been on max dose of antidepressants for 5 years. i

recently managed to get off the diazepam and sleeping tablets thou.

anyway i will see what happens on tuesday.

thanks again

sian

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[Guest guest]

Hi Sian,

i'm afraid i have been on max dose of antidepressants for 5 years. i recently managed to get off the diazepam and sleeping tablets thou.

Yes, I feared that much ( It's the easy way out for our doctors to sedate patients and shut them up when they can't find what is going on.... But well done you for weaning yourself off the diazepam and sleeping pills. Hopefully, if the cause for your low cortisol can be found, it will then be possible to get off the antidepressants as well.

Your proposed letter is good, although I would expand it a little and, whilst leaving it friendly and respectful, make it a little stronger by you pointing out that you are well aware of the facts. How about the following :

Dear Dr C Parkes,I am extremely concerned about my health and in particular I amconcerned about my low morning cortisol levels. I am aware that cortisol levels as low as mine [98 nmol/L (ref range 138 -635 nmol/L)] represent adrenal insufficiency, which might be caused by inadequate ACTH production (secondary adrenal insufficiency). Would you please investigate further to ascertain if there is a serious problem with my adrenals, pituitary gland or hypothalamus and order a Short Synacthen Stimulation test, concurrent with a serum ACTH test.

For some reason the FT4 test was not done last week, although my TSH was still suppressed. As you no doubt are aware, abnormalities of the pituitary gland can also cause TSH suppression, which adds weight to my request for an SST and ACTH serum test.

Would you please place this letter with my medical records.

With thanks and kind regards,

It seems to me that your GP is not aware of the significance of very low cortisol levels or much else for that matter, but when she reads the above, she will get the Medical Handbook out or look it up on the computer and check... and hopefully see the light and give you an order form for an SST and Serum ACTH test.

Fingers firmly crossed and let us know what she says.

With best wishes,

[Guest guest]

thanx christina, i will change the letter

>

>

> Hi Sian,

>

> i'm afraid i have been on max dose of antidepressants for 5

> years. i recently managed to get off the diazepam and sleeping tablets

> thou.

>

> Yes, I feared that much ( It's the easy way out for our doctors

> to sedate patients and shut them up when they can't find what is

> going on.... But well done you for weaning yourself off the diazepam and

> sleeping pills. Hopefully, if the cause for your low cortisol can be

> found, it will then be possible to get off the antidepressants as well.

>

> Your proposed letter is good, although I would expand it a little and,

> whilst leaving it friendly and respectful, make it a little stronger by

> you pointing out that you are well aware of the facts. How about the

> following :

>

>

>

> Dear Dr C Parkes,

> I am extremely concerned about my health and in particular I am

> concerned about my low morning cortisol levels. I am aware that cortisol

> levels as low as mine [98 nmol/L (ref range 138 -635 nmol/L)] represent

> adrenal insufficiency, which might be caused by inadequate ACTH

> production (secondary adrenal insufficiency). Would you please

> investigate further to ascertain if there is a serious problem with my

> adrenals, pituitary gland or hypothalamus and order a Short Synacthen

> Stimulation test, concurrent with a serum ACTH test.

>

> For some reason the FT4 test was not done last week, although my TSH was

> still suppressed. As you no doubt are aware, abnormalities of the

> pituitary gland can also cause TSH suppression, which adds weight to my

> request for an SST and ACTH serum test.

>

> Would you please place this letter with my medical records.

>

> With thanks and kind regards,

>

>

>

> It seems to me that your GP is not aware of the significance of very low

> cortisol levels or much else for that matter, but when she reads the

> above, she will get the Medical Handbook out or look it up on the

> computer and check... and hopefully see the light and give you an order

> form for an SST and Serum ACTH test.

>

> Fingers firmly crossed and let us know what she says.

>

> With best wishes,

>

>

>