Addisons Disease

Hi, I searched the forum for addisons and it guided me to this Thyroid forum, so I hope it's ok to post here.

On monday my GP phoned to say my blood tests had come back abnormal and she said I have Addison's Disease.

For a quick bit of background in November 2016 I became very ill with suspected Glandular Fever, I had the blood tests done and the mono test came back positive. I was very ill from November through to February. However since then I have had bad fatigue, so have been off work and returning to my GP a lot. Anyway I'm now at the point of being told I have Addinsons and tomorrow I will be having a synacthen test tomorrow morning.

At the moment I feel absolutely terrified and i feel my world is over. I feel shocked, morbid, terrified, anxious and really tearful and confused. I'm the sort of person that is squeamish and I pass out at a blood test, so I feel all of this is too much to take.

I was just wondering if anyone has Addison's and how do they feel? Also has anyone had a GP say they have Addinson's but have the Synacthen test come back negative?

Thank you. x

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oldestnewest

Welcome to our forum,

Many members with hypothyroidism can also have Adrenal fatigue. I have read this link re Addision's and it is due to your adrenal gland being compromised and not working as it should do.

mayoclinic.org/diseases-con...

"Extract:

Causes

Adrenal glands

Adrenal glands

Addison's disease results when your adrenal glands are damaged, producing insufficient amounts of the hormone cortisol and often aldosterone as well. These glands are located just above your kidneys. As part of your endocrine system, they produce hormones that give instructions to virtually every organ and tissue in your body."

I am sorry you are so worried and terrified but I think it is more common than we would think. It is also part of the Endocrine system so I wonder why your GP hasn't referred you to an Endocrinologist.

Other member's who have had a similar diagnosis as you will also respond.

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Glandular fever (Ebstien Barr virus) is strongly linked to Hashimoto's

thyroidpharmacist.com/artic...

hypothyroidmom.com/hashimot...

Hashimoto's can upset adrenals, causing adrenal fatigue. With adrenal fatigue short synacin test likely negative

Has your GP tested thyroid antibodies and all thyroid levels, plus these vitamins

You need following tested

TSH

FT4

FT3

TPO antibodies

TG antibodies

Vitamin D

Folate

B12

Ferritin

If GP is reluctant or unhelpful then can get private tests

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw

All thyroid tests should be done as early as possible in morning and fasting.

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Your doctor cannot know you have Addison's from a blood test - as far as I know. S/he sounds like one of those doctors that like to over-dramatise and scare the proverbial out of their patients! Doctors like that need a punch on the nose!

A blood test only shows you what is happening at the time the blood was drawn - like a snap shoot. It would appear that, at that moment, your cortisol was low - maybe even very low - but that does not automatically mean that you have Addison's. As shaws said, you could have adrenal fatigue, but more testing is necessary to really know what's going on. Hence the Synacthen test. More helpful would have been a 24 hour saliva test, because that will show you what goes on throughout the day. But the NHS doesn't do that test. A Synacthen test is all black and white - you either have it or you don't - which is probably why doctors don't believe in adrenal fatigue. But, there are grey areas, and you could just be in one of those, with low cortisol in the morning, but picking up throughout the day.

So, yes, it is perfectly possible to have a doctor dramatically announce that you have Addison's, and the Synacthen test come back normal. :)

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Hi Grey Goose. Thank you for that :) I've just been so confused since Monday. Two GPS said I have it and told me I'm rare :/

I suppose I'll just have to wait and see what happens. I'm so squeamish and scared of vomit (I'm an emetophobic) and I read people feel sick with this test.

Sorry if my replies are a bit scatty, I'm just very confused and scared at the moment.

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Yes, I understand, it is very scary. I'll be keeping my fingers crossed for you that everything goes well. Take care, and let us know how it goes. x

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I felt better after my test - although the test itself made me cry uncontrollably for no obvious reason (so take plenty of tissues). Didn't feel sick at all - in fact less sick than normal in the mornings. The really bad one is the insulin stress test, which they may send you for if the synacthen test is "not quite right".

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Thank you both for your replies.

My doctor seems to be very thourough with blood tests. She's given quite a lot of blood tests in the last few months.

I'm about to go for my test now. I'm so scared. I'm scared of side effects and blood tests :/

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Hi there. Sorry you've been so poorly and now been told by your GP that you have Addison's. I may be wrong but I think it's for a consultant endocrinologist to diagnose Addison's - not for a GP?

Anyway my friend has Addison's and is 63 - she was diagnosed in her late 20s and has been on high dose cortosteroids ever since. She also takes Levothyroxine for Hypothyroidism but she had to be demanding over this because it was subclinical. She does have severe osteoporosis now after all the steroids - now switched to Prednisolone. She also has Sjögren's - which I have too. But she's alive and relatively well and happy and only was forced to take early retirement on grounds of ill health about five years ago from her demanding and high powered job. She is a bit of an ostrich so she has only just joined the Addison's Society and found out this way that she had been overmedicated for years - hence the osteoporosis. She thinks I'm a tad too focussed but that's me and I do know a lot about my diseases and believe this really helps me to work well with my doctors compared to her .

So once you are treated effectively you should feel so much better I believe.

Fear of needles and other squeamish phobias will have to be oveecome once you have been properly diagnosed. But the urgent referral to an endocrinologist is the immediate thing I would expect at this stage. Then you can read up and learn about Addison's and hypothyroidism - because knowledge is power and knowing your own body and understanding test results and learning to work well with your doctors (don't fall out with them too readily as my friend has just done!) will help you self manage and come to terms more easily with what's happening to you.

When you see your GP try to go well informed and hold your ground if you need to, ask for copies of all results to date and to be referred immediately and urgently to an endocrinologist. If they believe you have Addison's then it's a very serious disease and needs diagnosis and treatment asap.

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I have Addison's

Diagnosed in a&e when I was very poorly, so I don't remember if I felt sick from the synacthen test...but I don't think so

I feel ok 😊

I take my tablets on time; I've experimented on splitting my total dose throughout the day to find what suits me best

I listen to my body and rest or up dose as necessary

Good luck today, let us know how it goes 😊

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Bronzebunny, I don't have any advice to offer re Addison's but I can so relate to how you feel with tests etc, I'm the same and know what that fear feels like.

Sending you lots of positive vibes and please let us know how you get on x

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I had the short Synacthen test and I didn't feel sick with it. Try not to worry, at least your issues are being investigated. Good luck. Hope all goes well. x

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a) How can they know you have Addison's if you have not already had a synacthen test?

b) Why are they bothering with a synacthen test if they know you have Addison's?

It is a serious illness and you should carry an alert card or bracelet/pendant at all times and be prepared to increase your cortisone at times of phyisical or mental stress. I used to work with someone with it and he did very well as long as he was careful with meds.

You probably don't have it (but it is autoimmune). If you are just inside the range for cortisol (as I was - by one point) they won't give you any treatment, so be prepared for that.

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Hey everyone, I just got home. It's all done. I got really anxious (I'm an anxious person anyway) so I went outside and calmed down and was fine after. Only thing that happened was my arms felt really tingly and I got scared.

I asked the nurse what my cortisol level was and she said 25 :/ dunno what that means.

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In my non-expert and untrained opinion that does sound low. For info on the SST test, this link is useful. If you ever have another test you could make sure it is done correctly based on this info :

imperialendo.co.uk/Bible201...

Look at pages 68 - 70.

---

Why would you be ashamed of not sleeping well? It's as common as muck, and is probably one of the most common problems people see their doctor about.

It could be that your sleeping pattern is poor because your cortisol is too low, but...

You should mention the poor sleeping pattern to your doctor/consultant because it will affect the interpretation of the test you've just had done. The output of cortisol is affected by time of day - and your sleeping pattern would have a major effect on it too. See this link :

thepaleomom.com/wp-content/...

The idea of the SST test is to find out the level of cortisol you have at the highest point in the day. But if your circadian rhythm is so out of sync with normal daytime such that your cortisol reaches a peak at 8pm then your doctors may think you have Addison's when in fact you don't. Since the treatment for Addison's Disease is steroids for life, steroids have serious side effects, and steroids are not something to be taken lightly, this is very important.

In someone with normal cortisol output and a normal circadian rhythm, it is rising cortisol that wakes them up ready to start their day in the morning. It is cortisol dropping to a low level that enables people to get to sleep at night. In tandem with cortisol lowering towards night time, melatonin rises.

I have had the same problems with sleeping during daytime as you. I recently decided I'd had enough of it, and wanted to switch to being awake at daytime instead. I took about 4 - 6 weeks to switch, which I did by moving my bedtime later by about 2 hours, then getting used to sleeping then, then moving another 2 hours. In preparation for doing this I bought some 3mg melatonin on Ebay, and I break them up. I take about a third of a pill when I need to. I've managed to change my sleeping times now, but it is taking a lot of self-discipline to make myself go to bed at sensible times now. I'm not very good at it, I have to admit, but I'm still just about managing.

greygoose Would you agree with what I've said above re: Addison's? You have experience of taking steroids for adrenal function, and I don't, so I'd trust you more than me on the subject. :D

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Well, HB, you know more about the over-all picture than I do! I didn't even realise that the Synacthen test was to find out the highest level during the day! That does seem a little... what shall I say...unhelpful, to me, because what you really want to know is when that highest level is - as you said - and what is happening the rest of the time. And, for that, as I said, you need a 24 hour saliva cortisol test. Which, the NHS, in its infinite wisdom, doesn't do - but I do think it would be a good investment to get it done privately.

That nurse was incredibly unhelpful, just giving you a number, like that, without any sort of range. But, perhaps it didn't mean anything to her, either! It does seem low, but without a range...

But, I would agree with HB. You don't want to take the steroids unless you absolutely need to. Also, you need to see a doctor that knows what he's doing with them. And not many do. A lot of them will tell you that you need to take the steroid - HydroCortisone - throughout the day, in imitation of the adrenals natural output. That is not necessarily so. But, if you do that, when you don't need to, then your adrenals will shut down, and won't start up again - in this respect, they are the opposite of the thyroid.

So, I really would urge you to get the saliva test done, in order to have more information, before you start taking anything. Especially given your sleeping pattern, which - as HB said - is due to your cortisol abnormalities, and not causing them.

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Oh, forgot to ask, have they tested any other adrenal hormones apart from cortisol? Are you on any medication which might affect the adrenals - like statins?

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Oh, I don't know. I asked the doctor if it was my pituitary gland causing this and he sat looking at my blood tests and said no (no idea how he could tell that though).

My doctor said the normal range for cortisol blood test should be around 400, though she didn't tell me my result because I was in shock at the time (this was over the phone and unexpected). So today I asked the nurse who was doing my synacthen test and she said it was 25, so that seems really low. I read up online and it says anything below 100 almost certainly means addisons.

I do take Cipralex antidepressant, I'm on 10mg and I take asthma inhalers (non steroid ones).

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Well, they shouldn't affect your adrenals. But, you really do need to get a copy of your blood test results. He won't know if it's your pituitary unless he's done the right tests, so you need to see those tests. If you live in the UK, then you have a legal right to have a print-out.

But, you are talking about two different tests, there. The cortisol test your doctor did, where he said the norm was 400, was a blood test, and you don't have a result for that.

It's the synacthen test you got the 25 for and you don't know what the norm is for that. The two norms won't be the same.

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Oh no, its the blood test that the GP said the norm was 400 and I have a reading of 25 and thats why I was referred for a synacthen test. I wont get the synacthen tests until next week they said.

Ah I didn't know that about being able to have a print out of blood test results, thats good to know. I am in the UK :)

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Ah, ok. I didn't understand that.

You have a legal right to your results under the 1998 Data Protection Act. If they refuse, they are breaking the law, and there are steps you can take. But doctors will never just give them to you! lol They either think you won't understand (!) or they don't want you to know! :(

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I didn't even realise that the Synacthen test was to find out the highest level during the day!

Now you've got me worrying that I'd got it wrong. Since cortisol changes over a period of about 24 hours, and hits a peak at roughly 8am - 9am if people have a normal circadian rhythm, and that is when the test is ideally carried out, I may have jumped to conclusions. But having jumped to that conclusion I do think it is a reasonable conclusion to have jumped to. :D

But the other issue of course, is whether doctors think the same way as me on the subject. What are the chances? Nil, probably. :O

Doctors must know that some people have different circadian rhythms. How do people doing long-term night-shifts cope if their cortisol is rising to a maximum just before sleeping? They simply would never sleep! Do doctors take that into consideration when doing SST tests on people doing night-shifts I wonder...

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I'm not saying your wrong! I don't know. I've never had a synacthen test, for some reason. I had an 8 o'clock cortisol blood test, and that was so low, my doctor put me straight onto HC, saying I had sever adrenal fatigue. But, as the majority of doctors don't believe in adrenal fatigue, I'm sure they just call any low reading 'Addison's' by default! When it might not be at all. I doubt there are many doctors that know anything about adrenals - they have enough trouble with thyroids!

Another question I can't find an answer to : is true Addison's autoimmune? Aren't there antibodies to test for, to confirm diagnosis?

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My understanding of the short synacthen test was blood is taken and cortisol levels measured, you're jabbed with stuff that's supposed to make your body produce cortisol...more blood taken after 30 minutes where the cortisol levels are measured again

Insignificant change in cortisol levels means adrenal insufficiency

Im guessing that tests for aldosterone levels would further prove primary adrenal insufficiency

I did jig my memory by looking here

gloshospitals.nhs.uk/en/War...

I'd be interested to know if there's an antibody test...I'd ask my endocrinologist, but doubt he'd know or be interested as he only mentioned Graves to me last year (I was diagnosed at least 15 years ago!)

Bronze bunny, my sleep pattern has greatly improved since adjusting my hydrocortisone schedule

Do you have the Addison's tan...your forum name made me think 🤔

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Yes, I know the mechanics of the test, I was just unaware of what, exactly, it was supposed to prove.

I certainly do think that other adrenal hormones need to be tested, too.

There are adrenal antibodies, can't remember the names off hand, but I don't know if it's usual practice to test for them. And, then again, is all Addison's autoimmune, or just sometimes, like hypo?

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I'm still learning about Addison's, lots of questions for my endocrinologist, he's gonna love me, not!!

I'd guess Addison's is a complicated beast, like hypo and finding the practical information to help yourself is not easy. I feel lucky to have found this forum for my thyroid issues, I'm doing so much better 😊

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Yes, well, be careful about what your endo tells you! If they don't know the answers, they do have a tendency to make things up! Always check anything he says.

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That has to be the most valuable lesson I've learned here!

👍

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Oh god, I didn't know steroids could do that if I don't need them. Ugh, this whole thing is confusing me :s

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No, that's not what I said. I said if you take them at the wrong times.

When I was put on HC - because my morning cortisol was very, very low, as yours obviously is - it was explained to me that the HC was just a helping hand, not a crutch. The busiest time for the adrenals is first thing in the morning, as HB explained, when they have to get you out of bed and started on your day. Yours aren't - as mine weren't - capable of doing that. So, they need a helping hand.

You take the HC when you first get up in the morning. That gets your body going, getting breakfast, getting dressed. Then, if necessary, you can take another dose at lunchtime. But, never after 1.0 pm UNLESS you really do have Addison's and not just sluggish adrenals.

Addison's is when your cortisol is very low all through the day. We don't yet know that yours is. Which is why I say you really should get the 24 hour saliva cortisol test before you start taking anything. So, that you know exactly what's going on. The test you've just done only tells you what your highest level of cortisol is (or so we believe) but doesn't tell you when it reaches that level. That's what you want to know. And you also want to know just how low it is the rest of the time. The synacthen test can't tell you that.

HC does, of course, have side effects. One of them being severe water retention. But, it will only shut down your adrenals if you take it at the wrong time. :)

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Ahh I see, sorry, I'm really not with it lately. Where do I get a saliva test from?

I think I'm feeling a little odd after todays test.:s

I will keep re-reading this thread because my head is so scatty from everything, I just can't take anything in at the moment :s

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Well, that's perfectly normal. Take your time, but above all, don't panic.

Details of saliva testing here :

thyroiduk.org/tuk/testing/r...

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Thank you so much :)

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Hey Humanbean, I worry about my sleep pattern because I don't want anyone thinking I'm a lazy lay about. lol.

Thank you for the link, I'll try to read it properly, I've just read a bit but I'm so tired after today.

I really don't want to take steroids, but I don't want to die either, this whole situation is scaring me to death. I wish I could rewind to last Friday when I phoned about my blood tests and they said they were all ok, but were waiting on some others. I liked thinking it was chronic fatigue as I knew I'd get better. I'm just finding the whole thing crazy.

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Well, tell your doctor about your sleeping pattern, and just prepare yourself for anything they might say. It's better to take steroids for the right reasons, than to take them for the wrong reasons because you're afraid of being embarrassed by your doctor. :)

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I will tell her and the Consultant I will be seeing about my results.

Why can't I just have an underachieve thyroid like my mum :/

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I just wondered something. So I didn't admit to my doctor because I was too ashamed but my sleep pattern is all to hell. I sometimes fall asleep 5am-8am and get up at 4/6pm. Would this affect my cortisol levels? Would that make them as low as 25? When I have a blood test I sometimes don't have any sleep before having it and sometimes I've only had 3hours maybe.

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If I were you I'd be 100% straight with your GP about sleep patterns and everything else too. I wouldn't try and self test or self diagnose. I think you need a specialist to determine whether or not you have Addison's - and if you need steroids then you do and they will know. I know many with rheumatic diseases who take steroids long term. It isn't ideal but it's better than the alternative, even for them. If you have Addison's then you will need steroids to survive.

However they won't give you steroids unless they are absolutely certain you need them because the long term effects are too risky. Doctors can make mistakes - but Addison's is not something they would diagnose lightly or wrongly. Hang in there and please try not to get over anxious - I'm sure you will know one way or the other soon enough. 🤗

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Thank you. I will be seeing the consultant when the synacthen test results come through. I'm just trying to make sense of it all :)

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Okay that sounds really good. Sometimes, when people on forums tell me that I need to do this or get that done myself I feel complete panic! Remember that these doctors do years of training. It certainly doesn't make them perfect or even any good - but it does at least mean that they are more knowledgeable than strangers like me on forums like this one!

If you like your GP then that's a good indication that they might be quite trustworthy - especially to tell about poor sleep patterns.

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Hehe don't worry, I trust my doctor, she seems pretty on the ball. I didn't like her at first because she made me have loads of blood tests all the time lol.

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Always so much better to have a GP who insists on taking blood and who takes your symptoms seriously than one who doesn't!! X

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Ps here's a link about fatigue. It is actually written by someone with my autoimmune disease but could just as easily apply to any type of autoimmunity I believe. info.sjogrens.org/conquerin...

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Thank you, I'll have a look :)

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Have a look on Pituitary Foundation; Addisons appears to relate to that. There is prob a Webinar on their website about it relating to dosages

Bluecat

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Thank you, I will have a look :)

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i appear to be secondary Addisons - as have Low Cortisol - a test that GPs dont do. Was done by a second rate hospital.who said l have ME!!! Am waiting to see consultant at highly rated major Endo Hospitl. The general Helpline and Nurse helplines are amazing and they can tell you which Endo depts are good

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I thought I had ME but my doctor kept digging and I felt annoyed because all I wanted was no stress and lots of sleep lol. I'm sorry you haven't had much luck with you doctors :( How long have you been diagnosed for?

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My friend who has Addison's and Sjogren's was diagnosed with ME at first too!

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Hi Bluecat, which hospital. My Endo can't tell me if I have Addisons or Hypopituitarism. He said my short synathcen test was blunt, whatever that means. I had an MRI on my pituitary though as another Dr when I was admitted to MAU last Dec said it showed I had a problem with my pituitary not producing enough ACTH. The Endo is not particularly helpful at all and said the tests I would need to determine Addisons or Hypopituitarism aren't funded by the NHS. I had a fall and concussion 16 months ago and became ill after this. I do have Hashimotos though. I've been hypothyroid for 16 years, but only diagnosed with Hashimotos when I saw the Endo in November. I'm sick and tired of getting the runaround.

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lve had the runaround all my life till now and before l met the Healer(now departed) l think ACTH is the chemical we are short of for the Adrenals = Addisons. Dont know where you are but Pituitary Foundation (relevant in the case of Addisons) did say Southampton Gen were best for me. l had been to one in Dorset that did that Synacthen test and then said nothing wrong, its ME to my fury. lve not been yet but did meet the very Senior Consultants at a Solent group Pituitary Foundation meeting @ Soton Gen and they were both delightful - answering questions for2 hours. But it is very hard to get an actual appointment with either to start. PF recommend all the Medical Endo staff there. l wd have a chat with them on their Helpline - they are very good

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Thank you for your reply.

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You're welcome - glad to help if l can. This lot dont like us metioning hospital names normally. By the way l was training for Foot REflexology eons ago - at my worst; and l always felt much better for 3 days after at least. dont know anyone here and other wise have to try and do bits for myself, not easy. Much depends if the therapist suits you

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This unbelievably has gone on for more than 40 years - ruining career & relationships thru always being overtired + irritable. i saw rotten GP in South Ken when mine was away (age 23), who wrote letter to hospital: wd u convnce this young girl there is nothing wrong. l had all worst symptoms & dreadful PMT. Tried about 8 GPs since - basic thyroid tests shows up little and altho always on btm figure T4 always told was 'within normal limits' or just below. Then met amazing Bournemouth Healer who was incredible with female ailments - he spent one year working weekly on pitutiary rebalancing. Said cant do it fast, been out for so long. He kept me going every few months for 20 years when l had been on verge of just giving up. Sadly he suddenly passed 4 years ago since when l have just gone downhill - mainly no energy/cant cope. Then had have an almighty strop with GP - refusing outright to go silly Rheumatology and asking for referal to major Gen Hospital who Pit Found recommended (thru personal experience) This is a less common problem - affecting adrenals - than actual 'thyroid' tho of course it does cause thyroid issues. Most GPs know little of either and arent interested.

pituitary.org.uk/members-ar...

This is what you need to see, usually available only to members. l joined as they were SO helpful. Guy on Weds afternoons is bril (volunteer)

l just hope l will get on OK with the next Consultant. and get the remedy l need. l cant find another Healer who can help me like the last one. Consultants booked till October. Good luck Bluecat

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Hi Bronzebunny, my take on this is that your out of sync sleep pattern could be the cause of your low morning cortisol, my similar sleep pattern has altered my serum cortisol, it's out by 4 - 5 hours in all tests I've had done including salivary tests and the DUTCH adrenal test, but I haven't had a short synacthen test so I don't know for sure about that.

Whether it does alter that or not, I do think you must tell the consultant about this sleep pattern because it probably is important. Best of luck with your results!

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I would recommend looking at the Addison's Disease Self Help Group Uk, they have tons of information and are really helpful. There's also a fb page. My son was dx with Addison's initially from a blood test and it was followed up with the tests taken at hospital to check just how badly his adrenal gland was affected. It is a shock to get the dx and if it is confirmed by the endo you will be supported and monitored. It is a big learning curve but as you will see from people's personal experience on the ADSHG UK it doesn't stop them from fulfilling their ambitions. Good luck and best wishes.

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Hey everyone, sorry I haven't replied to everyone yet, I will get around to it. I've just been in so much shock I don't know what to do,

Today I feel so suicidal and I can't stop crying.

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Find that site Dotty gave you, and join the forum. Read up the articles too. I was diagnosed with Addisons last year and I've been fine since starting steroids. No problems at all.

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Hi Mary, thank you for that. I'm going to phone the doctor tomorrow and see what she says. I think I might go see her because I feel so depressed.

My cortisol was 25 so I can't see how it isn't Addison's . I just wish they were wrong.

I keep thinking this time last week I thought it was just plane old lovely chronic fatigue and I was ok with that.

When I have some money I'll join the Addison's society, it's just I don't have a penny to pay for it.

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Are you on Facebook? There's a good UK Addisons group on there, and an international Adrenal Diseases Suport group. I've got CFS too. had that for a lot of years. They need to do more testing at the hospital now to sort out what eactly is wrong with you. The treatment is still steroids anyway and it's a tiny dose, just replacing what your body doesn't make for itself any more. You'll be fine :)

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I am on Facebook, I'll have a look.

Thank you for that. I think I've just had a shock all week and today I feel depressed and I want to run away from my body and I wish I could rewind. Before this it would take me weeks to work up to get a blood test. I'm an emetophobe and scared of vomit too. I'm unbelievably squeamish and now this had happened.

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Hi, I'm so sorry for not updating sooner. I saw the consultant just over a week ago and I don't have addisons disease, it's just chronic fatigue :)

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