Re: Just out of Hospital..

[Guest guest]

I am pasting below part of a response that has sent to

Steve's question, which I think covers what you are asking exactly.

Let us know if this is of some help to you.

Luv - Sheila

>You

keep saying that addisons is adrenal damage, the definitions i have been

reading simply say when your adrenals are unable to produce the required amount

of cortisol needed

Yes, it is correct that primary s

means irreparable damage, and therefore it is also true to say that with primary

's (not to be confused with secondary AD, which is a malfunctioning at

the pituitary end) the adrenals are unable to produce the required amount of

cortisol. It is just a bit misleading putting it this way.

With primary AD the outer layer of the

adrenal glands will have been destroyed by autoantibodies and the second layer

will be severely compromised. It is the outer layer of the adrenals (the

adrenal cortex has 3 layers) that produces mineralcorticoids (mainly

represented by Aldosterone). Mineralcorticoids regulate the fluid- and

electrolyte balance.... they retain the correct level of sodium and potassium

in the bloodstream. This is why patients with primary AD need to take Florinef,

as this replaces the lost Aldosterone. Without this mineralcorticoid their

electrolytes would spiral out of control and the patient would die.

The next layer of the adrenal cortex

produces the glucocorticoids – cortisol and cortisone. With primary AD

this layer is also badly affected, but I do not know to what degree this second

layer is also damaged or just severely weakened.

Dr. Peatfield says in his book about

's disease (quote)

described a disease in

1855, where the patient had become chronically ill, with lethargy, loss of

appetite, low blood pressure (low enough to cause fainting attacks),

hypoglycaemia (extreme sensitivity to lack of carbohydrate and sugars in the

diet), a poor response to even mild illness, and a risk of sudden collapse or

even death when subject to illness, injury or shock. These unfortunates

classically developed a pigmentation or darkening of the skin, especially in

skin folds and creases, but also generally. They pursued a steady downhill

course, until their death. What struck was that there seemed little to

find at post mortem – except both adrenal glands were taken over by TB

bacilli, and consequently not working. Today the adrenals are more likely to be

damaged by other processes, most commonly autoimmune diseases; but the

principle is the same. There is a steady loss of function, with accumulating

symptoms of an illness, which, untreated, will end in death. While gross

adrenal failure is not too difficult to diagnose – if it is thought about

– it is partial adrenal failure we are concerned about. In this book I

prefer to use the term low adrenal reserve. (unquote)

What can kill an untreated ian

patient in an adrenal crisis is dehydration, which leads to an imbalance of the

electrolytes – without mineralcorticoid (aldosterone) to control and

balance K and Na, the potassium (K) spirals to dangerously high levels...

high potassium stops the heart from beating. At the same time the sodium (Na)

drops like a stone and this stops the kidneys from working – so the

patient dies of heart & kidney failure.... In an ian crisis

the first thing that needs doing is to link the patient up to a drip and to

rehydrate him and then to give cortisol to help the system deal with the shock.

Low adrenal reserve, adrenal fatigue or

whatever you want to call it, is something very different and it is very

common. It means your adrenals are knackered, worn out by stress or illness and

they just haven't got what it takes anymore. Depending on the level of

exhaustion they need more or less of a helping hand in form of minerals and

vitamins, rest – and in extreme cases - a physiological (but not

therapeutic !) amount of HC. In time you can recover from adrenal fatigue,

because basically your adrenals are in working order....they are just too tired

and worn out to work. But they are not broken. Unlike with AD, adrenal fatigue

is in most cases reversible.

An SST will prove the following – If

your cortisol level can be doubled within 1 hour by injecting ACTH hormone into

your bloodstream, then your adrenals are not damaged and you do not have

primary 's. Damaged adrenals will not produce sufficient cortisol under

stimulation – they can't, however much you try to make them; the base

cortisol level would start off below 150 and might go up by as little as

20% after one hour, but basically it will be a flat lined response.... and THAT

would be a diagnosis for primary 's – a very rare and life

threatening autoimmune condition. The unfortunate patient would have to take

Florinef for life and manually simulate what the outer layer of healthy

adrenals would automatically do... regulate the fluid- and electrolyte balance.

Any stressful situation can trigger a life-threatening crisis and the patient

would have to learn to stress-dose him or herself with extra HC to keep

everything ticking over just so. The condition is manageable, but it's not an

easy thing to do.

With best wishes,

I was dragged to the hospital by my parents, I didn't want to go as I could

barely move and just wanted to sleep and I have been before like this and they

have just sent me home saying your vitals are fine.

So after a long wait we saw someone who found some of the test results from

Monday. He said he could not find the reference ranges but that all was fine

and from my baseline this is not an adrenal issue.

Cortisol baseline: 15 (426)

30 mins: 19 (542)

60 mins: 20 (575)

I am confused about this, from what I can see this rise is not that great? They

all keep saying there is nothing wrong with my adrenal function

[Guest guest]

I was like this on occasion when I was on levothyroxine alone. I went to my GP

who thought I looked like death warmed up, and very old (I was only mid-30s). He

prescribed a short course (2 weeks) of prednisolone. I felt normal again within

about three hours of taking the first tablet.

I had two more lots of prednisolone in the following four months, at which point

I switched to NDT (Armour then) after discovering my FT3 was very low and FT4

high end of normal.

I've never needed the steroids again since I switched.

I would guess you have adrenal fatigue as a direct result of lack of thyroid

treatment, but please, please see someone like Dr P as a matter of urgency...

Take care,

Cat.

>

> I've gone down hill since then, I ended up in A & E early this morning as my

muscles became so weak I could barely lift them. By BP was low/normal but my

heart felt like it was pounding, I had pain in my back (around kidneys) and

directly opposite in the abdomen. My mind was a complete fog and I could not

coordinate my movements properly. My knees and other joints feel like they are

throbbing and I had nausea and a bad headache.

>

>

[Guest guest]

So after a long wait we saw someone who found some of the test results from Monday. He said he could not find the reference ranges but that all was fine and from my baseline this is not an adrenal issue.Cortisol baseline: 15 (426)30 mins: 19 (542)60 mins: 20 (575)I am confused about this, from what I can see this rise is not that great? They all keep saying there is nothing wrong with my adrenal function.. maybe there isn't? I am not on any thyroid medication as I felt like I was being poisoned on Thyroxine, they would not offer me an alternative to take.

Hello ,

I just saw this... and I am as confused as you are. I do not know what those figures mean. I do not understand which measurements they have used and I assume that the figures in brackets mean a measurement in nmol/L. So this figure of 15 would then be equivalent to a cortisol level of 426 nmol/L (?) If so, this would indeed suggest a confusing and "normal" base cortisol level. But the figures that follow are even more confusing ..... If this REALLY had been a short synacthen test then your adrenals are not working normally – according to the guidelines in the endocrine handbook you would have failed the test.... but you had a high starting level, and this is where it gets awfully confusing.

What you need to do, , is to contact your doctor ASAP – the one who has ordered the test – and you need to clear up with him what kind of tests they have done and what those results mean. Do not see him on your own – take someone with you. You say that you had a `barrage of tests' performed on Monday... perhaps the above figures refer to something other than an ACTH stimulation test (???). I can't imagine what this test could be other than a stimulation test, but the figures do not make much sense to me.

If, however, this really is an ACTH stimulation test result, then you need to be referred to an endo who specialises in adrenal function (and I would guess your current endo does not!). I would not put much value on what the doctor in the hospital has told you – it might have been some junior doctor who doesn't understand what he or she is looking at and in all honesty and sadness, there are probably quite a few doctors who are not familiar with the interpretation of an ACTH stim test. They would just look at the starting figure of 426 (if this is what that figure means) and without looking it up they would not necessarily know that the figure should have to double within the hour. At a glance a base cortisol level of 426 would indeed look like a healthy cortisol output....

In the meantime, , stay hydrated at all times. Sip your 8 glasses of plain water throughout the day every day without fail as a precaution, even if you didn't feel like it. Avoid tea or coffee and all stimulants for the moment, as least until you know what is going on... and make an urgent appointment with the doctor to find out what on earth is going on.

Print out the SST procedure from this endocrine handbook

http://dialspace.dial.pipex.com/town/estate/aquc35/book/Bible2010v1b.pdf

scroll down to page 48 and print out the guidelines for the test. Tell the doctor that you are confused because the figures do not add up and you have been told everything is normal, when things do not look nor feel "normal" by your reckoning. It says in the

INTERPRETATION

Normal response if test done at 0900h (considerable diurnal variation):

Stimulated plasma cortisol >550 nmol/l

Incremental rise of at least 170 nmol/l

· If impaired cortisol response, and ACTH >200 ng/l then diagnosis is primary adrenal failure.

· If ACTH <10ng/l then diagnosis is secondary adrenal failure

· Response of 17-OH progesterone in suspected 21-hydroxylase deficiency (non-classical): marked

rise after ACTH stimulation (>30 nmol/l), which varies according to whether the patient is

homozygous or heterozygous. Reference for nomogram: New et al., JCEM 57, 320-326 (1983).

SENSITIVITY AND SPECIFICITY

A normal cortisol response does not exclude adrenal failure, since impending adrenal failure might be associated with a much greater loss of zona glomerulosa function. The latter would be suggested by

an elevated plasma renin activity.

If equivocal result and no urgency, repeat test after a few weeks.

An abnormal response is consistent with primary or secondary adrenal failure, and should be investigated further. Consider long synacthen test or pituitary function testing.

I have highlighted the important passages for you in red. Always assuming that this indeed was an ACTH stim test – your incremental rise from base level cortisol was 116 points after 30 minutes and 149 points after 60 minutes .... therefore you stimulation response was short by 21 points of the required minimum of 170 point.... and we are talking about the absolute minimum rise.... a "normal" response would have produced a doubling of the starting figure.

You'll also have to ask the doc about your serum ACTH figure – if the ACTH was greater than 200 ng/l, then you would have tested positive for primary 's, whatever your baseline cortisol figure was!

And if the ACTH figure was less than 10 ng/l , then you would have tested positive for secondary 's.

In any case – if the results are unclear, the test should be repeated in about 3 weeks time, as an abnormal result (and yours would have been abnormal) would be consistent with either primary or secondary 's and it would need further investigation....

I remember reassuring you only a few days ago that you definitely do not suffer from primary 's, .... I might have to eat my words now. Thinking on, your massively fluctuating TSH results in the space of a few weeks and all the other confusing results suddenly appear in a different light.

I do not know what is going on. I am only sure of one thing – that something IS going on. If this has been an ACTH stim test, then this is not a normal adrenal response, whatever you have been told at the hospital. Remember what I said in my first reply to you on the other forum – 's is incredibly rare, so rare that many doctors do not recognize or even expect to ever see a patient with it.

I am so very sorry that you feel too ill to look after your son... but you have taken the right decision to let your mum look after him for now.

Please keep posting and let us know what the doctor says. Phone in for an emergency appointment – make it as urgent as you like, it is justified. Don't let the secretary fob you off with some excuse and do remember to take someone with you for the consultation.

Love,

[Guest guest]

Hi I'm sorry to hear how ill you are feeling . One suggestion is to make sure

your doctor takes your blood pressure twice . First sitting as they usually do

then standing up . At one time mine fell 40 points on standing going bellow

100. Ask for the measurements . Even the best doctors don't seem to do this .

All the best

[Guest guest]

,

So sorry to hear what has happened – none of my

short senacten tests showed I had an adrenal issue but I did – it is how

much cortisol is getting to the cells or something like that. If you are not

on thyroid meds then you will also feel awful. I am sure the girls on this

forum can help you more than me at the moment on this subject as I was put on

HC for my issues.

Take care though

Best wishes

Mandy

[Guest guest]

Hi All,

Can someone tell me again what NDT is as I have

forgotten

Thanks

Mandy

[Guest guest]

Natural Desiccated Thyroid. The other main one that comes up

time and again is NAX (Nutri Adrenal Extra) or NAE (Nutri Adrenal Extra)

Luv - Sheila

Hi All,

Can someone tell me

again what NDT is as I have forgotten

Thanks

Mandy

No

virus found in this message.

Checked by AVG - www.avg.com

Version: 2012.0.1913 / Virus Database: 2112/4803 - Release Date: 02/11/12

[Guest guest]

Thank you all for taking the time to reply.

I am totally bed bound now, I can't lift my limbs well and altough I get 'just'

think I can't really verbalize things. My husband says I'm speaking slowly. I

have not got the energy to see or speak to anybody so doubt ill get anyhelp now.

I should probably accept my fate. I miss my child so much. My bp was once done

and it went form 110/70 to 110/50 on standing this was in october.

I can't get up to do anything as i feel my heart beats so heavy when i do and my

limbs too heavy. I don't know how to help myself now as i can't do anything and

don'y have the care or energy to try. IT sunday so no dr open snd A & E Wwil send

me home.

>

> Hi I'm sorry to hear how ill you are feeling . One suggestion is to make sure

your doctor takes your blood pressure twice . First sitting as they usually do

then standing up . At one time mine fell 40 points on standing going bellow

100. Ask for the measurements . Even the best doctors don't seem to do this .

All the best

>

[Guest guest]

Hello again, ,

I am so sorry to hear how poorly you feel. You "sound" extremely hypothyroid, but until your adrenals situation has been cleared up it would be risky to take thyroid hormone, because taking thyroid on top of unstable adrenals would just make you even more poorly.

The best advice I can give you, , is to stay in bed for now and keep drinking fluids; but if you deteriorate, do call an ambulance to take you back to A & E. If you arrive at A & E in an ambulance you have a greater chance to be looked at properly and it would cut out hours of waiting to be seen. Also, people do not usually go to A & E for fun and perhaps there would be another doctor on duty... even if it were the same one, you could show him or her a print out from the endocrine handbook about the interpretation of an SST and ask to explain why they think you have normal adrenal function when you clearly have not fulfilled the requirements for a "normal" result. Also ask on that occasion for the serum ACTH result – the SST figures and the ACTH figure have to be looked at together....

You could explain that you are also severely hypothyroid with a TSH jumping 6 months post partum from 0.08 to 70 within six months and back to 6.95 within the space of one month and that you have an inexplicable intolerance to Levothyroxine.... there are always senior doctors in a hospital and a junior doctor is likely to seek advice from those when a patient presents with confusing and unexplained symptoms – if not, ask the doctor to see a consultant for a second opinion. If you are unable and too weak and stressed to explain all this to a doctor, ask your husband to do it for you. Doctors have a duty to care – don't let them push you around. It surely must be obvious that you are not "putting this on" to get attention.

Above all, , stay well hydrated. I can't stress that enough.

I am sorry, but this is all I can suggest for now.

Love,

[Guest guest]

Does

your husband, or your parents have a car and if so, can they take you to your

local A and E? Please don't assume that they will send you home - they most

definitely will not do this if you are suffering with this? You need to get

checked out to ensure that you are not going into an adrenal crisis. What you

are going through right now, may not be, but you have to be absolutely

certain, because an adrenal crisis can be life threatening.

Luv

- Sheila

I am totally bed bound now, I can't lift my limbs well and altough I get 'just'

think I can't really verbalize things. My husband says I'm speaking slowly. I

have not got the energy to see or speak to anybody so doubt ill get anyhelp

now. I should probably accept my fate. I miss my child so much. My bp was once

done and it went form 110/70 to 110/50 on standing this was in october.

I can't get up to do anything as i feel my heart beats so heavy when i do and

my limbs too heavy. I don't know how to help myself now as i can't do anything

and don'y have the care or energy to try. IT sunday so no dr open snd A & E

Wwil send me home.

[Guest guest]

Sheila and other sometimes refer to Natural Desiccated Thyroid (NDT) as 'thyroid extract' or 'natural thyroid extract'. This is just another term for NDT. I only mention this as this used to confuse me terribly when I first joined TPA.LoveJacquie> Can someone tell me again what NDT is as I have forgotten > >

[Guest guest]

, ask your partner/hubby to help you or your mum/dad. first of can you get an apointment with Dr P or Dr S, Dr p has many clinicsaround the country and Dr s is in Birmingham. you need help NOW,. if left the problem can leave you very weak. you may have adrenal problems, the test they do in hospitalis not that accurate it only shows if they are really bad. the thyroid tests also do not always show mild cases so you need someone who no`s all this.! where are you.? their maybe someone in the group who lives not to far away can help you.we have small groups around the country who may be able to help. angel.

[Guest guest]

HI there,

I am also very sorry to hear how you are feeling –

I think if you mention Adrenal Crisis at A & E it will get them moving as I

think it is something that is taught in medical school but you would have to

mention it first I daresay !!!

I hope you feel better soon – please get some

help soon !!!

Best wishes for your speedy recovery

Mandy

[Guest guest]

Dear , I'm so sorry to hear about what you're going thru - I hope by now you have got some help.It may help you to know that I had a very similar experience 18 months ago.The same symptoms as you - I could barely move, couldn't think or speak and had very bad back ache (which is typical of adrenal problems) . I also had funny things happening with my kidneys and urine. I went to a & e and they admitted me for 4 days to stabilize me. After this, I didn't see an endocrinologist - but some months on saw Dr Peatfield and was diagnosed  with severe adrenal problems.I do wish you well and do hope you get the right help that you need. It is very frightening at the time but there are lots of people here and on the adrenal site who can offer support.Best wishes, AlisonOh btw. I was diagnosed at one stage with m.e. but this turned out to be a bit of a false lead.Good luck.-> 

[Guest guest]

My husband has just had a phone call from the endo's secretary saying that he is

discharging me as there is nothing wrong with me. He said that my stim result is

perfectly normal, that at 7.93 my TSH is normal and that antibodies of 150

(0-50) are 'irrelevant'.

He said that it would be unethical of him to treat my thyroid condition as I DO

NOT HAVE ONE!(my TSH was 70 in December).

He has recommended to my GP that I am referred for mental evaluation. He said

that he doesn't know where I have 'made up' information that a baseline cortisol

needs to make an incremental rise if the baseline is in low/normal range.

My head is seriously screwed! so I don't have a thyroid problem, I don't have

adrenal problems and I'm nuts? Please someone!!!! tell me the truth is this guy

a d**k or do I need locking up? this is serious now. I don't trust myself with

my baby if I am making all this up. i am very very close to the edge now

>

> Dear , I'm so sorry to hear about what you're going thru - I hope

> by now you have got some help.It may help you to know that I had a very

>

> -

> > 

>

[Guest guest]

He sounds useless.

You need to find a new doctor.

Are you able to go private?

Chris

>

>

> My husband has just had a phone call from the endo's secretary saying that he

is discharging me as there is nothing wrong with me. He said that my stim result

is perfectly normal, that at 7.93 my TSH is normal and that antibodies of 150

(0-50) are 'irrelevant'.

> He said that it would be unethical of him to treat my thyroid condition as I

DO NOT HAVE ONE!(my TSH was 70 in December).

> He has recommended to my GP that I am referred for mental evaluation. He said

that he doesn't know where I have 'made up' information that a baseline cortisol

needs to make an incremental rise if the baseline is in low/normal range.

[Guest guest]

I'm looking into it now. My problems is they have got in my head now and I'm

starting to think I am making this all up. Do you think my thyroid and adrenal

levels are normal? surely having antibodies means I do have a thyroid problem?

I'm seriously thinking of having myself sectioned. I know that sounds extreme

but if its all in my mind I need to be doped up or something cos I don't want to

live like this.

>

> He sounds useless.

>

> You need to find a new doctor.

>

> Are you able to go private?

>

>

> Chris

>

[Guest guest]

People are probably sick of me posting about the Hertoghe questionnaire, but if

you do it, does it give you symptoms of thyroid and adrenal problems?

thyroid treatment/files/MEDICAL%20QUES\

TIONNAIRES/

I don't know much about thyroid antibodies but i think other people have given

their opinion on this.

- know thyself! you know whether you are mentally ill or not or

whether it's hormonal. trust your instincts.

Low thyroid and adrenal (and other hormones) can cause mental health and

physical symptoms.

Do you or do you not have symptoms of hormonal imbalances? If you do, then

isn't it worth getting these treated first before you decide you have a

psychiatric problem?

Your adrenals don't sound right to me. maybe ordinarily your adrenals aren't

being stimulated enough by your pituitary.

maybe you are hypopituitary? i was told my pituitary is underactive.

the problem is getting treatment. what options are available to you

(financially)?

It sounds like you crashed after the ACTH test. Were you worse after it than

before?

Sorry I know very little about thyroid antibodies.

Chris

[Guest guest]

You certainly don't come across as a loon. I don't understand a TSH around 7 not indicating a possible thyroid issue. I felt terrible when mine was around 3. Is there any chance of you seeing Dr Skinner or Dr Peatfield? When I saw Dr Skinner, it was a relief - by then I'd started to experience side vision hallucinations. 

Lynne

[Guest guest]

You're not imagining these symptoms! I had the same problem and had all the medical people, including my G.P. thinking I was depressed (I wasn't). Have faith in yourself - you probably know better than most of the so called professionals what is wrong.Difficult to do, but if it's your adrenals, try to remain calm - all this turmoil will not help.Remember that the NHS just rely on certain tests - and these don't necessarily show up problems.Can I suggest you take a day or so of rest, just to rebalance yourself and then look at doing a 24 hour saliva cortisol test and a thyroid urine test - available from Geneva diagnostics. Don't know if anyone else has suggested these but it will give you a good benchmark and starting point and show up any problems so that you don't think you're imagining it. I'm appalled they've suggested you have mental health problems. Best wishes Alison

[Guest guest]

Hi ,

My husband has just had a phone call from the endo's secretary saying that he is discharging me as there is nothing wrong with me. He said that my stim result is perfectly normal, that at 7.93 my TSH is normal and that antibodies of 150 (0-50) are 'irrelevant'.He said that it would be unethical of him to treat my thyroid condition as I DO NOT HAVE ONE!(my TSH was 70 in December).He has recommended to my GP that I am referred for mental evaluation.

Boy, oh boy.....God help his other patients! *You* are perfectly sane, , this endo is talking through his lower orifice and if I were in your position, I would seriously consider making a complaint against this endo to the GMC for incompetence .... but this you can think about; for now you need a competent doctor... or rather two – a new GP wouldn't go amiss either.

Ok – practical question.... are you in a position to see someone like Dr. Skinner? He charges £ 180 per consultation and his surgery is in Birmingham. You would need a letter of referral from your GP to him direct, but if you make enough of a fuss he will probably give it to you if you went onto the attack, just to get you off his back. You'd very likely get an appointment with Dr. S. pretty quickly.

If you can't go private – there are a few good NHS endos on Sheila's list in Yorkshire....

You also need to have copies of ALL your lab results to date ... have you got them? – if not, get them. Do not take no for an answer. If it is too much for you to deal with at the moment, ask your husband and family for help; it is your right to ask for copies... someone here can probably state the paragraph from the NHS guidelines to that effect.

He said that he doesn't know where I have 'made up' information that a baseline cortisol needs to make an incremental rise if the baseline is in l low/normal range.

OK – finally something concrete.... relax- you have not "made it up" – the interpretation for a "normal" ACTH stimulation test is very clearly explained on page 48 of the Endocrinlogy Handbook of the Imperial College Healthcare NHS Trust of the Charing Cross, Hammersmith and St. 's hospitals... and you have failed the test according to their guidelines.

As for "making up the doubling".... how about throwing the interpretation in the Merck Handbook back into this endo's face?.... does he dispute that too?

http://www.merckmanuals.com/professional/endocrine_and_metabolic_disorders/adrenal_disorders/addisons_disease.html

Extract:

Normal preinjection serum cortisol ranges from 5 to 25 ìg/dL (138 to 690 nmol/L) and doubles in 30 to 90 min, reaching at least 20 ìg/dL (552 nmol/L). Patients with 's disease have low or low-normal values that do not rise above 20 ìg/dL at 30 min.

Your figures were:

Cortisol baseline: 15 (426)30 mins: 19 (542)60 mins: 20 (575)

So, if going by the Merck rather than the above endocrine NHS handbook, your figures appear to be inside the "normal" range.... JUST.... but they still have not doubled after 60 minutes and I doubt if they would have done so in 90 minutes. It does not say in the Merck "....should double OR reach at least 20 ug/dl" – it says "double, reaching at least 20 ug/dl". Now, English is not my first language, but it is my understanding that this means that both criteria have to be fulfilled in order to pass the test.

Taking into account that between the Merck and the NHS endocrine handbook they can't even get their conversion figures right (so what is it? ... 20 = 575 or 20 = 552 ???) and the small issue of you feeling incredibly ill, combined with a very questionable ACTH stim test result and other endocrine figures fluctuating madly, I would have thought that your test result would at least qualify for `equivocal' and should warrant a repeat test.

My head is seriously screwed! so I don't have a thyroid problem, I don't have adrenal problems and I'm nuts? Please someone!!!! tell me the truth is this guy a d**k or do I need locking up? this is serious now. I don't trust myself with my baby if I am making all this up. i am very very close to the edge now.

Rest assured, this guy is a dickhead all right and he is neglecting his duty to care. But he has formed his opinion of you now and that is the danger – you do not want to be unfairly tarred with the brush of `mental illness' and have that on your medical records. You need to do something about that and write a letter to the practice manager, stating that you object strongly to the endo's insinuation of having a mental health problem rather than having a thyroid problem and that you are considering your options of making an official complaint against this doctor to the GMC....

And seriously, I would consider it. It is unlikely that you would win your case (because in the end it always comes down to medical judgement), but it would cause this endo an enormous amount of inconvenience, paper work and possible loss of credibility. The GMC will have to take every complaint seriously.... so do think about it and if it were me, I would certainly at least threaten this endo with it to make him sit up and think ! ....Endos like that should not be let loose on unsuspecting patients.

Your case is anything but clear, , but by the way this goes, it seems that unfairly the onus is on you to prove that you are not mad (and for that you will need copies of all your test results, including ref ranges). You are hypothyroid and you have some unexplained adrenal issue. Your SST was at worst unequivocal or borderline, so needs further investigation IMHO. The least you should expect is a doctor remembering his or her duty to care and sit down with you to explain what might be going on and to answer all your questions.

Don't doubt yourself, , having a doctor title does not include being right at all times.

With best wishes,

[Guest guest]

- we love you - where would we be without you!

Luv - Sheila

Hi ,

Check out 'Duties of a Doctor

Registered with The General Medical Council .Luv -

Sheila

My husband has just had a phone call

from the endo's secretary saying that he is discharging me as there is nothing

wrong with me. He said that my stim result is perfectly normal, that at 7.93 my

TSH is normal and that antibodies of 150 (0-50) are 'irrelevant'.

He said that it would be unethical of him to treat my thyroid condition as I DO

NOT HAVE ONE!(my TSH was 70 in December).

He has recommended to my GP that I am referred for mental evaluation.

Boy, oh boy.....God help his other patients! *You*

are perfectly sane, , this endo is talking through his lower orifice and

if I were in your position, I would seriously consider making a complaint

against this endo to the GMC for incompetence .... but this you can think

about; for now you need a competent doctor... or rather two – a new GP

wouldn't go amiss either.

Ok – practical question.... are you in a

position to see someone like Dr. Skinner? He charges £ 180 per consultation and

his surgery is in Birmingham. You would need a letter of referral from your GP

to him direct, but if you make enough of a fuss he will probably give it to you

if you went onto the attack, just to get you off his back. You'd very likely

get an appointment with Dr. S. pretty quickly.

If you can't go private – there are a few good

NHS endos on Sheila's list in Yorkshire....

You also need to have copies of ALL your lab results

to date ... have you got them? – if not, get them. Do not take no for an

answer. If it is too much for you to deal with at the moment, ask your husband

and family for help; it is your right to ask for copies... someone here can

probably state the paragraph from the NHS guidelines to that effect.

He said that he doesn't know where I

have 'made up' information that a baseline cortisol needs to make an

incremental rise if the baseline is in l low/normal range.

OK – finally something concrete.... relax- you

have not " made it up " – the interpretation for a

" normal " ACTH stimulation test is very clearly explained on page 48

of the Endocrinlogy Handbook of the Imperial College Healthcare NHS Trust of

the Charing Cross, Hammersmith and St. 's hospitals... and you have failed

the test according to their guidelines.

As for " making up the doubling " .... how

about throwing the interpretation in the Merck Handbook back into this

endo's face?.... does he dispute that too?

http://www.merckmanuals.com/professional/endocrine_and_metabolic_disorders/adrenal_disorders/addisons_disease.html

Extract:

Normal

preinjection serum cortisol ranges from 5 to 25 ìg/dL

(138 to 690 nmol/L) and doubles in 30 to 90 min, reaching at least 20 ìg/dL (552 nmol/L). Patients with 's disease

have low or low-normal values that do not rise above 20 ìg/dL

at 30 min.

Your figures were:

Cortisol baseline:

15 (426)

30 mins: 19 (542)

60 mins: 20 (575)

So, if going by the Merck rather than the above

endocrine NHS handbook, your figures appear to be inside the " normal "

range.... JUST.... but they still have not doubled after 60 minutes and

I doubt if they would have done so in 90 minutes. It does not say in the

Merck " ....should double OR reach at least 20 ug/dl "

– it says " double, reaching at least 20

ug/dl " . Now, English is not my first language, but it is my understanding

that this means that both criteria have to be fulfilled in order to pass

the test.

Taking into account that between the Merck and the NHS

endocrine handbook they can't even get their conversion figures right (so what

is it? ... 20 = 575 or 20 = 552 ???) and the small issue of you feeling

incredibly ill, combined with a very questionable ACTH stim test result and

other endocrine figures fluctuating madly, I would have thought that your

test result would at least qualify for `equivocal'

and should warrant a repeat test.

My head is seriously screwed! so I don't

have a thyroid problem, I don't have adrenal problems and I'm nuts? Please

someone!!!! tell me the truth is this guy a d**k or do I need locking up? this

is serious now. I don't trust myself with my baby if I am making all this up. i

am very very close to the edge now.

Rest assured, this guy is a dickhead all right and he

is neglecting his duty to care. But he has formed his opinion of you now and

that is the danger – you do not want to be unfairly tarred with the brush

of `mental illness' and have that on your medical records. You need to do something about that and write a letter to the

practice manager, stating that you object strongly to the endo's insinuation of

having a mental health problem rather than having a thyroid problem and that

you are considering your options of making an official complaint against this

doctor to the GMC....My (Sheila) thoughts on this are - unless this is done, other

patients are quite likely to be denied a diagnosis and denied the treatment

that will make them well.  His lack of knowledge could cause great danger to

future patients. If you need any help with putting in a complaint, let us know

and we will do all we can to help you Tammy.

And seriously, I would consider it. It is unlikely

that you would win your case (because in the end it always comes down to

medical judgement), but it would cause this endo an enormous amount of

inconvenience, paper work and possible loss of credibility. The GMC will have

to take every complaint seriously.... so do think about it and if it were me, I

would certainly at least threaten this endo with it to make him sit up and

think ! ....Endos like that should not be let loose on unsuspecting patients.

Your case is anything but clear, , but by the way

this goes, it seems that unfairly the onus is on you to prove that you are not

mad (and for that you will need copies of all your test results, including ref

ranges). You are hypothyroid and you have some unexplained adrenal issue. Your SST

was at worst unequivocal or borderline, so needs further investigation IMHO.

The least you should expect is a doctor remembering his or her duty to care and

sit down with you to explain what might be going on and to answer all your

questions.

Don't doubt yourself, , having a doctor title

does not include being right at all times.

With best wishes,

No

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[Guest guest]

I'll second that!! Thank you all so much.. you really are keeping me going at

the moment.

I don't care how much it costs, I'll get the money I just need someone who will

treat me, someone who ideally can unravel this Adrenal confusion aswell.

Because of the urgency to be able to care for my son again I want to get in with

someone this week, I'll go anywhere and pay anything.

I'd love to see Dr S or Dr P but I know thats impossible in the near future,

plus I need someone who will be able to prescribe me with HC or whatever if

needed.

Shelia would you mind sending me the contact details of someone you think might

be able to help me or at least see me at short notice please?

Many Thanks

x

>

> - we love you - where would we be without you!

>

> Luv - Sheila

>

>

> Hi ,

>

> Check out 'Duties of a Doctor Registered with The General Medical Council

> .Luv - Sheila

>

> _____

>

> No virus found in this message.

> Checked by AVG - www.avg.com

> Version: 2012.0.1913 / Virus Database: 2112/4807 - Release Date: 02/13/12

>

[Guest guest]

Oh and regardless of what happens, complaints will certainly be made. I'm

usually a bit of a terrier when I am well and can't wait to let it out after all

this!

>

> I'll second that!! Thank you all so much.. you really are keeping me going at

the moment.

>

moderated. old messages remooved

[Guest guest]

,

If it turns out you need HC, you can just buy it without prescription. I did

for 2 years and sorted out my adrenals. I'm fine now. You would have to buy

it from abroad but this is legal so long as you are buying for your own use.

We have lists of trusted pharmacies in the files....

thyroid treatment

x

>

>

> I'd love to see Dr S or Dr P but I know thats impossible in the near future,

plus I need someone who will be able to prescribe me with HC or whatever if

needed.

>