PRIMARY OR SECONDARY ADRENAL INSUFFICIENCY

[posthinking01]

Hi there,

I have Addison's due to secondary adrenal insufficiency - this site is fantastic for most all we deal with but can I also recommend to AI people the Adrenal Self Help Group -

addisons.org.uk/ - on going to a meeting in Oxford where a Professor from Oxford University stated that a large number of Paramedics and Emergency medicine don't know how to treat this condition in an emergency situation -we even heard a lady speak about an anesthetist who said she didn't know about the condition just before she was due to have an operation - and don't worry the surgeon will sort it out afterwards. The more knowledge you glean on this condition to help those who might be treating you is important and could save your life.

[LuluCops]

If you have secondary adrenal insufficiency, then you don’t have Addisons. I’ve lived with this condition for almost 3 years now and they are different. Addisons is Primary Adrenal Insufficiency, it’s where your Adrenals have shit down and stopped working for a certain reason. Secondary AI is usually a pituitary problem but my pituitary is absolutely fine, no tumours or anything.

They couldn’t decide for a long time what one I had, I’ve just had an interesting letter that was sent to my ortho consultant and on there she has put that I have Secondary Adrenal Insufficiency due to ‘exogenous steroid and opiates’!! Umm the only reason I am on the steroids is because without them my levels were <28 on a morning cortisol test and <27 on a short synathacen (sp??) test!! Oh and I’ve been off the MST for around 2 years!!?? So

Im still clueless as to what started/ caused my adrenals to go haywire.

Anyway, I’ll stop rambling now...... hope some of this helps xx

[posthinking01 in reply to LuluCops]

Hi there, I thought the same until I joined the ADSHG and got sent a load of leaflets on Addison's - I phoned them up and said I can't carry these cards around with me I don't have Addison's - she said I'm afraid you do - it doesn't matter at what point the adrenals are broken or where it has happened i.e. pituitary or adrenal tumour etc. - you have Addison's. Last Saturday, I went to a question and answer session with the group, where a Professor from Oxford University who is an expert on the condition is trying to get the medical profession up to speed as to how to treat this condition as people are dying because they do not know who to deal with it. He advised both the patient and their family are made aware of the issues they might face when getting ill and need emergency steroid injections etc. - he is travelling the country to hospitals where even endocrinologists do NOT know about this condition - I know it is supposed to be rare but that is ridiculous - anyway it is becoming more common these days. I asked my Lupus consultant at last visit do I have Addison's and nearly fell through the floor when he said YES. So afraid you do have it sorry to say and I was a bit cross I hadn't been told Secondary was Addison's. I was admitted twice with Sepsis and heard the registrar call the ward and say I am admitting an Addison's patient from A&E and that is when I started asking questions.

[LuluCops in reply to posthinking01]

I’ve been a member of the ADSHG FOR 2 and a half years and that’s the first time I’ve ever heard that. In fact I have a letter from my endo staying in no uncertain terms that I have secondary and not primary AI.

I was meant to go to the medic in a pub meeting too, I really wanted to meet and speak to Professor Wass, unfortunately I was too poorly and had to miss it! I was gutted!!

I’d like to know exactly who has decided that secondary is now Addisons. I know some people say they have Addisons because it’s easier than saying and explaining secondary AI. Secondary is usually caused by a problem with the pituitary or another cause not addict with the adrenals themselves, such as mine according to the endo (though I’m not convinced- hence why I wanted to attend that meeting) Primary is when it is an autoimmune reaction or from having your adrenals removed for whatever reason - cancer etc.

This is what I was told by the ADSHG and one of the top endos in my area, when I was diagnosed.

[posthinking01 in reply to LuluCops]

Well I am very sorry but Professor Wass stated it in the meeting when I queried it and so did the ADSHG people when I phoned them - so has Hammersmith Hospital renal unit I attend and so has Royal Surrey Endocrine - in fact they are supplying me with an emergency steroid injection kit. So I am only going on what I am being told - the Endocrine nurse (Addison's nurse) when I also queried with her said it doesn't matter what part of the adrenal gland pathway is broken - it is broken - whether it comes from the ACTH deficiency for AI secondary via the pituitary or indeed due to cancer or autoimmune attack - does not matter - it would only be relevant to your medical team - the treatment is the same large doses of HC if you have an emergency situation with illness or vomiting issue where you aren't keeping your steroid down. I did not imply it WAS the same I said it had to be treated the same way. Assuming you updose when ill?

[posthinking01 in reply to LuluCops]

Hi there - I bought the book off the site called Living with Addison's Disease very useful and has tips on 3 day rules for sickness. £10.00 I think.

[lilyak in reply to posthinking01]

Addison's disease is different to secondary adrenal insufficiency. A lot of what applies to Addison's disease patients also applies to those with secondary adrenal insufficiency, but they are DIFFERENT diseases. Addisions is usually autoimmune and the adrenals also don't produce aldosterone, which needs to be replaced as well. This isn't the case with secondary adrenal insufficiency. You really need to know which you do have, and your doctors should have explained it. Adrenal insufficiency can be caused by many different things, and the treatment differs. But if your adrenals have been suppressed by exogenous steroid use, you don't have Addison's. But as i said, a lot of the information will still apply. Many medical professionals don't know the difference, or are too lazy to explain it.

[posthinking01 in reply to lilyak]

I think I have already stated that and was aware of the difference - BUT when I queried that I was not an Addison's patient with ADSHG - I was told that I was an Addison's patient as it didn't matter why the adrenal gland had broken down just that it had and when I phoned the endocrine nurse at my endo hospital she told me the same thing - it is Addison's. I think the problem is that the medical profession might with a bit of luck know what Addison's is but not necessarily Adrenal Insufficiency type II and people are dying because they are given adrenaline in an emergency situation which is life threatening not life saving.

[lilyak in reply to posthinking01]

yeah, I don't understand what you're saying about 'adrenal insufficiency type II' being given adrenalin and that being life threatening. But a simple google search explains the difference between addison's and adrenal insufficency caused by prednisone use, or caused by a pituitary tumour. but you still insist you have Addison's disease, which is curious.

[posthinking01 in reply to lilyak]

Hi there - let me try to explain what I have been told by people who know far better than me - Adrenal insufficiency type II is the medical term for someone who has been on steroids etc. or has a pituitary problem which has caused the pituitary gland/adrenal gland to slow down cortisol production because they are taking cortisol medication or as a result of damage to the pituitary gland - therefore the adrenal gland response 'turns down or goes to sleep' as it is not needed. This is called a 'feed back loop' .

Unfortunately it can be a difficult thing to raise the adrenal glands back up to full performance again and can take months or years, if at all, to get back full health of the adrenal response to produce cortisol at the correct rate again.

Cortisol is life giving - it wakes us up in the morning within what is called the circadian rhythm - it protects us from stress - by stress I mean the shock of illness - shock generally etc. etc. - without cortisol we would be in a very dangerous life threatening condition.

Trouble is if someone collapsed or was very ill (illness uses up cortisol very heavily which is why I have to double my steroid dose if I get ill otherwise I could go into adrenal crisis which is life threatening) - now if the cortisol deficient patient - e.g. being cortisol deficient is given adrenaline - which is a stimulant - this could have devastating consequences as their body would not have enough cortisol to buffer or support the shock of the adrenaline to the system - in fact it could cause dire consequences. Soi t is imperative not to be given adrenaline if you are an 'Addison's' patient whether that be Type II or Addison's which is theoretically complete damage to the adrenal gland by an autoimmune disease i.e. they don't produce any cortisol at all.

As I have said previously I contacted the Adrenal Gland Self Help group and queried why I was being sent documents etc. stating ~Addisons when I wasn't an Addison's patient - they confirmed what I was told by RS Hospital Endocrine Nurse -= that it doesn't matter what part of the adrenal gland process is broken - it is broken - therefore it is Addison's whether it be from pituitary issues or complete failure of the gland.

It is vital however that you don't just assume you are cortisol deficient - you would need to be diagnosed as such as I have and on steroids for life. However - if you are - then you need to make sure you understand the 3 day ruling of sickness updosing of your steroid to allow the body to cope with your illness - whether that be a cold or something more serious - if you do not do this you will be putting yourself at risk.

Hope this helps you.

[posthinking01 in reply to posthinking01]

Forgot to add that at the dentist cortisol deficient patients have to be given non-adrenaline injections too.

[posthinking01 in reply to lilyak]

Hi there - had a thought the other day - when Dr Addison 'discovered' Addison's disease at St. Thomas' hospital all those years ago - steroids were not in use - so I wonder if he 'discovered' it now he would call the whole of the adrenal breakdown and subsequent deficiency 'Addison's - pity we can't ask him !!!

I sense the reason it is being called Addison's by a lot of the medical profession as has been stated in my case - is that it is not that important which part of the adrenal insufficiency is at fault i.e. the pituitary gland or destruction of the adrenal gland itself due to autoimmune issues - the result is the same - life long medication on steroids. Addison's diagnose is 90 per cent destruction of the adrenal gland apparently.

Obviously at the point of being treated for other issues it would need to be said where the deficiency is coming from but in an emergency situation - I dont think so - the team just need to know that the patient in front of them needs cortisol urgently in a lift threatening situation - in fact delays could occur if it was said adrenal insufficiency type II ????

[Shezxx]

I am so confused with this condition I really am. I have been told by different doctors adrenal insufficiency and addisons is the same disease. I have also been told I have them both by different doctors. how can it be the same disease. my endocrine doctor said I don't have addsions but bcos I have been on steroids for way too long they will never know if adrenals are that damaged as it will be way too hard to taper me off now. soooo what now then and which is it. ? any advice or help much appreciated

[posthinking01 in reply to Shezxx]

Hi there - I was shocked when I joined an organisation called ADSHG (Addisons Disease Self Help Group) and received an information pack with everything saying 'Addison's disease' I rang them up and said surely I can't use some of this can I as I dont have Addison's but secondary adrenal insufficiency due to steroid use - she said you still have Addison's but it isn't the autoimmune Addison's where the gland is destroyed by the immune system - but the gland is still diminished in its working properly - so it should still be classified as ~Addison's - I actually believe that they feel it is better for everyone to call it Addison's because the medical profession would not know what Adrenal insufficiency Type II is and that could be dangerous - say ~Addison's and hopefully they should know what it means - although on going to a meeting with a Dr Wass - apparently the medical profession are very ignorant about the condition and he is touring every hospital in the country visiting their A&E departments etc. to check they know how to treat it. People are dying because of ignorance. I would suggest you join ADSHG as they are really good. Any other questions just ask I am a bit of an 'expert' on this subject now...............

[Shezxx in reply to posthinking01]

thank you where do I join the addisons self help group ?

[posthinking01 in reply to Shezxx]

addisons.org.uk/

[Shezxx in reply to posthinking01]

hi I have tried to join but I cant see anything in any forums. have you a paid membership as I haven't maybe its that.

[helvella in reply to Shezxx]

Their NEW website is here: addisonsdisease.org.uk/

It has a forum but I have not checked whether you need a paid membership.

[posthinking01 in reply to helvella]

Thanks - yes I remember they were changing recently to a different web address.