98% Great Possibility, I Got Addisons Disease ..

[Goldengirl69]

I'm 98% Sure I got Addisons Disease . Some lovely lady on here thinks maby I do. All the Many Deathly Symptoms I have are Exact . I actually Hope so . I can't Take any More . Dying . I live in a very Low Grade area , where Doctors and Hospitals love Neglecting and Ridiculing people . I hope they give me the blood Test , and tell the truth . 😢 😭

[Sleepman]

My brother in law is fine with Addissons of confirmed. Hope it is all ok for you.

[radd]

Goldengirl69

I’m sorry to hear you are feeling so unwell.

You first need to ask your GP for a 9am cortisol blood test. Once it’s suspected your adrenals aren’t producing sufficient cortisol you should be referred for a synacthen Stim test.

However, remember adrenals suffer terribly with long term mismanaged hypothyroidism/hashi but can recover with the right supports. It took me five years of optimising thyroid meds & nutrients before expending energy became sustainable and weird symptoms such as internal vibrations left. Be hopeful 🤗

[Benjipuss in reply to radd]

Please may I ask does cortisol fluctuate? I had a 9am test a couple of months ago and it was satisfactory but it was only a bit above range and I noticed some medics stated the figure should be higher ? I hope Goldengirl69 feels better soon

[radd in reply to Benjipuss]

Benjipuss,

Cortisol should naturally follow a circadian pattern and be highest in the early morning (to wake us up).

[Benjipuss in reply to radd]

Sorry, I meant to say it was only just above the bottom of the range

[humanbean in reply to Benjipuss]

I had a 9am test a couple of months ago and it was satisfactory but it was only a bit above range and I noticed some medics stated the figure should be higher ?

I'm puzzled by this. In a healthy patient there is no reason why your cortisol should be above range.

I wonder if the doctors meant that cortisol levels would be expected to be higher IF the patient is believed to have Cushing's Disease or Cushing's Syndrome.

Cushing's Disease : en.wikipedia.org/wiki/Cushi...

Cushing's Syndrome : en.wikipedia.org/wiki/Cushi...

[Benjipuss in reply to humanbean]

Sorry, I meant it was only a little above the bottom of the range

[humanbean in reply to Benjipuss]

👍

[Headinjuryhypo1]

Hi, I hope you get some help out of them. I just want to alert you that if your adrenals aren't making enough cortisol, there are two possible causes. The problem may be in your adrenal glands themselves, or it may be that your pituitary gland isn't producing enough ACTH to stimulate them into making it. The second cause is more likely than the first. If it's the second, be wary of the short synacthen test, because it isn't that reliable for diagnosing pituitary-caused cortisol deficiency. This paper below says it misses two cases in every five.

Dorin RI, Diagnosis of Adrenal Insufficiency, 2003, Annals of Internal Medicine, pubmed.ncbi.nlm.nih.gov/128...

If you want to read two patient horror-stories about this, they are on investinme.org/Article-650%...

So basically, if you get told you haven't got cortisol deficiency, show them this advice from the Pituitary Foundation 'Please note: for patients with symptoms that may suggest cortisol deficiency that a 'pass' on a SST, may not always mean that cortisol deficiency is excluded, and that with persisting symptoms, referral to an endocrinologist is recommended, where testing may be carried out with alternatives such as the glucagon test or insulin stress test.' Google 'Pituitary Foundation, short synacthen test', and it should bring it up. The glucagon test (usually called 'the glucagon stimulation test') is more reliable so push for that if you have problems.

I wish you the best of luck!

[Headinjuryhypo1]

Hi Goldengirl, I really hope you get some help. I just wanted to say that if your adrenals aren't producing enough cortisol, there can be two causes. It can be in the adrenal glands themselves, or it can be caused by the pituitary gland not producing enough ACTH to stimulate them. The second cause is more common than the first. If it's the second, be wary of the short synacthen test, because it isn't that reliable for diagnosing pituitary-caused hypoadrenalism - in fact it misses 2 cases in every five. (Research: Dorin RI, Diagnosis of Adrenal Insufficiency, 2003, Annals of Internal Medicine, pubmed.ncbi.nlm.nih.gov/128... Two shocking patient stories highlight this, see investinme.org/Article-650%...

I wish you the best of luck 👍👍👍

[humanbean in reply to Headinjuryhypo1]

Headinjuryhypo1

Headinjuryhypo, you probably already know this stuff, so I'm not sure who the audience for my reply to you actually is.

I read your link with interest.

Your link highlights a bizarre and dangerous failure of doctor logic ...

1) The thyroid produces T4 and T3. T3 is the active thyroid hormone required by every cell in the body. The body's supply of T3 comes partially from the thyroid and partially by conversion of T4 into T3 in other organs. T4 is a prohormone i.e. it is the raw material required to produce another hormone, in this case T3. T4 has little or no activity by itself - it requires conversion to T3 to become active. If the thyroid and other organs don't produce enough T4 and T3 then the patient is suffering from Primary Hypothyroidism. The fault lies with the thyroid itself.

1a) If the thyroid hormone levels are too low doctors won't know because doctors don't test them.

2) But what prompts the thyroid to produce any T4 or T3 at all? It is TSH which is produced by the pituitary. Doctors have decided that TSH is all they need to know about the production of thyroid hormones.

2a) If the pituitary is unable to produce enough TSH to stimulate the thyroid then the patient has Secondary Hypothyroidism. But the vast majority of doctors appear to believe that pituitary problems leading to too low a level of TSH are so vanishingly rare that they don't need to even consider the problem and a low level of TSH - if it is low enough - is a sign that the patient has hyperthyroidism. So they can diagnose completely the wrong condition - hyperthyroidism - rather than Secondary Hypothyroidism, based simply on the TSH level.

3) What prompts the pituitary to produce any TSH? It is TRH (Thyrotropin Releasing Hormone) which is produced by the hypothalamus. Thyrotropin is another name for TSH. If the hypothalamus is producing too little TRH the patient is suffering from Tertiary Hypothyroidism.

3a) If the hypothalamus is unable to produce enough TRH, the pituitary won't produce sufficient TSH, and so the thyroid won't be stimulated sufficiently to produce T4 and T3. But doctors have decided they never need to know how much TRH the hypothalamus is producing because hypothalamus failure is so rare doctors never need to consider it.

4) The hypothalamus produces TRH in response to the levels of T4 and T3 in the blood and body. So we come full circle.

4a) This explains why getting a diagnosis of Secondary Hypothyroidism is so difficult. It's because doctors save money by simply refusing to test the appropriate hormones. The same is true of getting a diagnosis of Tertiary Hypothyroidism.

...

Having explained all that, we now turn to cortisol. How is that produced?

1) Cortisol is produced by the adrenal glands (there are two of them), which are small organs that sit on top of the kidneys.

1a) If the adrenal glands are unable to produce enough cortisol the patient is suffering from Primary Adrenal Insufficiency. Doctors measure cortisol to determine whether the patient has enough cortisol and their adrenal glands are healthy.

2) What prompts the adrenal glands to produce cortisol? The glands respond to levels of ACTH (Adrenocorticotropic Hormone) which is produced by the pituitary. If the pituitary is unable to produce enough ACTH then they are suffering from Secondary Adrenal Insufficiency.

2a) If the pituitary is unable to produce sufficient ACTH then doctors will probably not find out because they don't measure it. All they think they need to know is the amount of cortisol that the patient's adrenal glands produce. And in the Short Synacthen Test the patient is injected with a form of artificial ACTH called "tetracosactide" to make the adrenal glands produce cortisol. But the result of this is that the patient's own output of ACTH by the pituitary is never tested because they use an artificial version to force the adrenal glands to do their job. And if the adrenal glands can be forced to produce cortisol then, the logic goes, they will produce sufficient cortisol under normal circumstances. But this is faulty logic. Doctors have no clue whether the pituitary can produce sufficient ACTH by themselves because they don't test it to find out.

3) The pituitary produces ACTH when stimulated by the hypothalamus which produces Corticotropin-Releasing Hormone (CRH). Corticotropin is another name for ACTH. But since CRH is never measured doctors won't know if it is being produced in sufficient quantities to stimulate enough ACTH production from the pituitary. And ACTH is required to stimulate the adrenal glands to produce cortisol. If CRH levels are low then the patient is suffering from Tertiary Adrenal Insufficiency.

...

Anyone who can follow my description of how thyroid hormones and cortisol are produced should be able to see that the two processes are quite similar even though the end products (T4, T3 and cortisol) are all different.

...

The document in the following link - the "Endocrine Bible" - describes all the tests that could be done by the average Endocrinology Department in a hospital working within the confines of the NHS in the UK.

imperialendo.co.uk/Bible202...

The Short Synacthen Test (SST) is described in the Endocrine Bible on pages 68 - 70. And it includes a test for ACTH. If you read the "Method" described on page 69 the first step actually mentions testing ACTH output (which, as mentioned earlier, is produced by the pituitary).

But anecdotal evidence from patients who've gone through the SST shows that doctors always or almost always ignore the step of testing for ACTH (presumably to save money) and only concentrate on testing cortisol. As a result doctors can diagnose Primary Adrenal Insufficiency with this truncated version of the SST, but not Secondary or Tertiary Adrenal Insufficiency.

Since having very low cortisol can be fatal this is why people can die as a result of the truncated test. If their production of ACTH is too low or is absent then even healthy adrenal glands won't produce sufficient cortisol to keep a patient well. But doctors insist that testing ACTH is an unnecessary expense because they can stimulate the adrenal glands with tetracosactide i.e. artificial ACTH.

...

This link describes the causes of the various types of adrenal insufficiency :

en.wikipedia.org/wiki/Adren...

...

I should stress that I am not a doctor, and I am not guaranteeing that this reply is 100% accurate. But it is the best I can do, and I hope it helps somebody to research their health problems with thyroid or adrenal glands if doctors aren't helping them.

[Headinjuryhypo1 in reply to humanbean]

Thank you for giving such a complete, clear account. I hope everybody reads it, and is kept safe by it.

[hormonaljunkie]

Hi Goldengirl69, I have Addison’s, and I completely relate to the being fobbed off by doctors and hospitals.

My endocrinologist actually misread my test results, told me I should find a part time job (the classic it’s all in your head/look too young to be sick, I was diagnosed at 31), if it wasn’t for me being desperate and requesting a copy of the results from his secretary, I would likely have actually died.

I’ve seen a few other endos in the last 10 years and I’ve gone back to the initial one, because even though he’s since nearly killed me from malpractice/ poor care a further 2 times since the diagnosis (btw during some testing that he did after I went back to query his wrong diagnosis, he actually told me he doesn’t know how I’m alive, that I am the most “efficiently deficient” person he’s met, and he’s never seen someone with such a low result… funny how 2 weeks earlier I could have “just” solved my life with getting a job!)… but after seeing an additional 9 endocrinologists after him, they all turned out to be even worse!!

The problem is my Endo isn’t technically bad (the others I saw just had a complete lack of knowledge), but due to NHS constraints (not that it’s an excuse!) he tends to go over things quickly… and make mistakes. When I’ve had the luck to spend more time with him he is a decent doctor.

So all of that to say… I’m the first one telling people who are in the process of getting diagnosed to be very cautious and to learn to self advocate for themselves with this condition being so mis-diagnosed and misunderstood. Some people think I’m being negative (I guess I can’t blame them, why would anyone think a doctor can put your life at risk unless you’ve learnt that the hard way!), and I’d be more than happy to answer any specific questions you might have.

Of course I can only share my own experiences, and what works for me might be different for you.

Do you know what might have caused the adrenal insufficiency?

[humanbean in reply to hormonaljunkie]

(I guess I can’t blame them, why would anyone think a doctor can put your life at risk unless you’ve learnt that the hard way!)

I think you'll find that a lot of members of this forum with hormone problems think that doctors could kill them.

I'm glad you got a diagnosis in the end.

I'm curious... Do doctors feel the urge to repeatedly test their own diagnoses if the patient has something considered to be "rare"? After all, doctors rarely diagnose adrenal problems of any kind, and don't like diagnosing hypothyroidism, particularly if it isn't Primary Hypothyroidism.

[Headinjuryhypo1 in reply to hormonaljunkie]

If you have secondary hypoadrenalism (i.e. the kind that endos fail to diagnose, caused by the pituitary) then it's something that can be caused by a head injury or concussion, or a pituitary tumour, or radiation therapy, or certain types of medication (steroids, narcotics), haemorrhaging when giving birth, infections . . .