Have now been diagnosed with 'Adrenal Insufficiency'

Just found out I now have adrenal insufficiency so looks like I will be on the steroids for good. Not sure if this is the same as Addison's disease?

I am also going to the doctor as I have a patch on my shin that looks like Vitiligo? I am not sure though, it has gradually got bigger over the last two years. I ignored it, as I ignored the pigmentation around my neck and the outside of one of my feet. I am beginning to wonder if I had the adrenal problem before the severe thyroid failure?

I am beginning to feel a bit better though.

52 Replies

  • Hi just wondering about the pigmentation you mention.

    have you been told what caused/causing it ? One Professor of dermatology told me vitiligo can be inherited and link to thyroid. I was confused by some of his observations as he seemed to think my darkening pigmentation was sun realated but to be honest I argued that my skin was never exposed and spent very little time indoors. My condition now is very prominent around the neck and chest area in particular.

    Have you been given any reasoning for pigmentation ?

    Glad you are feeling a bit better :)


  • Hi - I have not even told anyone about the pigmentation. I have a GP appointment next Friday and I am going to point it out. I do sunbathe and use high factor creams, but this pigmentation was really unusual and I did think maybe I had over done it.

    I will let you know what she says.

    Thanks for comment.

  • How did you get the diagnosis of adrenal insufficiency?

  • I had a short Synathcen test (1 Hour) and they sent me a copy of all the results, the interpretation was 'adrenal insufficency'.

  • It is difficult to be absolute about the words. This paper appears to treat the phrase "adrenal insufficiency" as being another name for Addison's disease:


    Note the mention of "antibodies to 21-hydroxylase" in the abstract.


  • Hi Rod, yes that is what I have found when researching it.

    What is annoying is that I was meant to get an appointment to see the Consultant at the beginning of July, but they could only offer me one for the beginning of Sept. It is frustrating as I was only diagnosed with the thyroid problem at the end of March. Feel like I am being left to 'swim' on my own.

  • Rod Do you think rather than stress of surgery, many years of psychological and emotional distress exposure could cause this ?


    apologies Lilly for hi jacking your thread x

  • I would not wish to under-estimate this possibility. But my approach would be to look for and consider all the other possibilities first. After all, you could fall into the trap of thinking it due to stress, etc. And only later find that it was caused by one of the other possibilities (the original Addison's seemed to have often been due to tuberculosis of the adrenals, there is also autoimmune adrenitis, ACTH deficiency, etc.).

    It would be bad to find a specific cause and yet overlook the impact of stress. But probably better that way round because you have had the opportunity to address the identified issue so might well have improved somewhat.


  • Hi Rod, I would love to read this article you kindly linked but it refers to paeditric treatment of graves disease...if you get a moment please could you post the correct link? Many thanks indeed! Katey

  • My niece was quite ill a couple of years ago and was hospitalised for a couple of weeks. It turned out that she has Addisons disease i.e. the adrenal glands have packed up completely and she is on steroids for life. I am not sure if adrenal insufficiency is Addisons or not, not medically qualified to say, but from what she said she had quite a significant yellowing of the skin, looked like she was sun tanned, and I assumed this was related to Addisons disease. But again not sure if this is what you mean about pigmentation, I assume yours is only in specific areas.

  • Hi Jan - yes I am not sure either. My skin did not look yellow, more brown and patchy, very dark and freckly, you'd think I needed a good wash ?

    Interestingly I broke my ankle last year and also damaged the shin on the other leg, both areas went brown. I commented to my husband but again didn't think anything of it. Lucky I didn't have an adrenal crisis. I was exhausted after though.

  • This site might be useful to you as well, it mentions about pigmentation


  • My understanding is that adrenal deficiency/insufficiency is the path which leads to addison's . If "caught" soon enough addison's can be avoided. Am sure, however, that someone will correct me if I've misunderstood.

  • I hope I can help? Addison's disease is an autoimmune condition where the adrenal glands stop working, i.e. cortisol production is very low, or non existent. Adrenal insufficiency is as it says, some cortisol production but insufficient so when you need extra steroid in times of illness etc. the adrenals cannot respond. Adrenal insufficiency is often caused when people take steroids for other conditions, or supplement them unnecessarily. In simple terms the pituitary & adrenal glands monitor the amount of steroids in your body, when you are taking steroids in sufficient quantities the adrenal glands say "hey this body has enough steroid" and slow down or stop producing cortisol themselves. This is why steroids need to weaned off so the adrenals wake up and start working again. So adrenal insufficiency is different to Addison's.

  • Thank you for that. Funny people are not informed about something so serious --- about the insufficiency & the side effect of taking steroids.

  • Thank you so much for the explanation. Hopefully I can come off the steroids later on.

  • ...have always thought that tanning was an immune response and some cases of vitiligo are connected to immune illness. My pale skin - paler than my own - was on my neck in the shape of a butterfly. It went once I started on T4 - how very strange. No longer have to patch it into my own colour......guess my body was just trying to give me a message....

  • My Gp sent me to the deramatology camouflage clinic.

    I was asked to show the lady my vitiligo. she took one look and said Wow what are you doing here? I can;t disguise that with make up.lol I was then referred to the professor by this nurse and although very thank full for the treatment of phototherapy (UV) it became apparent it was not really improving and I have had to live with it and it's now rapid worsening :(

  • It must be difficult for you. I feel for you, I only have a small patch about the size of a 10p coin on my leg.

  • Hi lilly-lou-la Are these patches like larger-than-average brown age spots? I only found out I had low adrenals after demanding a test from my GP last year. After initial panic stations it was then decided I didnt need to go onto medication. Then it was discovered also my vit D was very low so was treated with a short massive dose. My skin though has been a cause for concern with me for ages with these brown marks which I am sure are increasing with time. Ive shown them to my GP but was brushed off without him even really looking at them.

  • This recent thread may be useful too.


  • Thanks

  • yellow and pigmentation and vitligo is all do t with adrenal insuf/addsions. from what i have learned addisons is complete pack up of adrenals and adrenal insufficency is just that-- not sufficient but--- if not taken care of can go to addisosns. goo dsite is dr. lam/adrenal fatique. or dr james wilson.

    adrenls not treated before thyroid will cause a crisis, dr brownstein another good doctor. i am sure i had a massice crisisi and i do not know how i lived to tell the tale, in 2007 i ened up in hosp , never recovered properly and then a massive cras 2010 and i still suffering. i wish you well and glad you are being treated. i am actually thinking of try ing some cortef in a low dose now as no bugger is helping.

  • Hi - I had an episode a few years ago, where I was vomiting all night - I didn't know until now that this was a crisis. I was so ill the next day. At least now I know that I will have to take more cortisol if needed.

  • after all my evdence written down and presente dto various docs an dproffessors stil l no one has said ADRENAL CRISIS it pisses me off , they cant find anyother reason to come up with an explanation either! ihad hypoglycemic symptoms, was so weak , excess sweating, dizzy lihtheaed, severe abdo pain and dreadful low back ache, nausea so bad that i could eat for two months dry mouth , dry skin, trembling, hydrolic motor in my body 24/7- i learned also that low cortisolwillproduce more adrenaline, and i was running on it, my bp was low, i felt sooooo bloody ill i was so scared no one wante dto know, i was disbelievd and treate dlike a moron. i thought i was dying an dgot so ill i had to be looked after by a friend,my homeopth gave me cortisol and i ha dto look up whatto take , at night i would be havin gconvulsions as i had so much adrenaline i thought i would take off, it was terrible and it was so weird the longer it got left the worse i got- i really cannot believe now what i went thru for months and still here. when i finally wentto neuro hosp in london a year later, and told the neuro the first thing he said-- sound like addisons to me but you are still alive!-- i rest my case!

  • and that was could not eat--- i lost a stone , and had external trembling as well as internal trembling diahorreaa, and i am stil trembling today and i have 18 month wait for tests at the neuro, i have about another year to go! they are so booked up.

  • hmm interesting reading -thanks. :)

    I have extensive Vitiligo which started in my late teens and rapidly spread during my two pregnancies. Mu understanding is that there is a higher incidence rate of hypothyroidism with vitiligo but not all by far. I believe the ratio is about a third of vitiligo sufferers have hypothyroidism. I am not aware of any link to adrenal insufficiency on any Vitiligo sites.

    From a personal point of view alongside having vitiligo I do have hypothyroidism ( which according to blood tests is not of the autoimmune type) and for effective treatment have found the need to support my adrenals using the circadian method. I do not have any hyperpigmentation -in fact I don't think I have any pigmentation left except in my eyes and eyebrows. lol!!

  • I have done a little more research and I am wrong -there is a link to adrenal issues with Vitiligo. Sorry everyone!

    below is the link to the article:-


  • Hi, my hypothyroid is due to autoimmune problems. I think I had the patch (yet to be confirmed as vitilgo) before my thyroid problems, but I am not sure.

  • Hi Lilli-Loi-la ; how did you find out that your hypothyroid is due to an autoimmune problem? Also how come, that my saliva test proved positive for adrenal deficiency when the cortisol tests (inc synatchens) proved negative and that they don't test for progesterone & aldosterone levels? Both of mine proved a positive deficiency again with the saliva test?

    I'm getting really cheesed off that tests we do ourselves are not accepted by the NHS.

  • Hi Snowstorm - I was told this by the professor at the hosp.

    I had the synathecen test and my base level was 181 but after an hour only went up to 506. I was told it should have gone higher. I am seeing the specialist nurse today I will try and ask more.

    Sorry I haven't more to say, but all this diagnosis is new for me and I am probably not asking the right questions.

  • hi Lilly Lou La what kind of test and did you have, the short Synacthen (lasts 1 hour) or did you have the long Synacthen(lasts the whole day), to diagnose Adrenal insufficiency?

    Or was the diagnosis made by the ASI (24 hrs saliva test).

    I am interested because I had the short test but I noted it only lasted 1/2 an hour ,was told I did not have adrenal insufficiency and could stop taking Cortisone, as a consequence I have been very weak,dizzy and my balance even worse with pressure in my head and numbness at back of headand other parts of the head I do have numbness in other parts of the the body, but that could be due to other problems ? Vit B12 deficiency. I researched a bit on the

    Synacthen test procedure hence the length and type of the test and I can't help wandering if the Synacthen test I was given lasting only 1/2 hour was an adequate one.

  • Hi - I had the short Synacthen test which took an hour. The diagnosis was made from this.

    I have had dizziness and balance issues, but thought this was to do with my hearing, which has got worse.

    I hope this info helps.

  • Thanks Lilly-Lou-La for you reply, we're you given the readings/ results of the test?

    I was given a baseline cortisol of 372 and a 30 minutes cortisol of 724 nmol/L and told it was normal .The endo said this exclude adrenal insufficiency and can stop the Prednisolone.

    To stop Prednisolone after 5 years just like that I thought it is unwise so. I took it on alternate days at first then stopped taking it now more than 2 weeks without it and legs muscles weak numbness Left outside leg Lt shoulder under arm and top of head at times numbness and

    tingling face plus poor balance. I would be interested to know if your results were lower then mine. Thanks.

  • Hi - I am not really sure of the 'baseline' meaning (new to all of this) but I had three readings:

    0 mins - 181

    30 mins - 442

    60 mins - 506

    Then there was a lot of biochemistry figures. Let me know if you need any other info.

  • Virtiligo has been associated with B12 def. Lots of info here..


  • I too was diagnosed with adrenal deficiency along with progesterone & aldosterone deficiency. NOT by the usual NHS cortisol tests, but by the saliva test done privately. Not accepted by the NHS of course. So have been left to fend for myself including to supplement with VitD3, B6, B5 & B12. It is a losing battle to feel well again. One of the symptoms of progesterone & aldosterone deficiency is sweating and flushing. This same is also a side effect of taking thyroid meds, and if you happen to be menopausal --- well what can I say!!!

  • Hi - What is the issue with you being given tests for cortisol? I don't understand why this is not being offered? I feel very frustrated for you.

    Sweating - yes, woke up early this morning like I had been in a shower.

    Menopause - welcome to my world!

  • I have been on levothyroxine for about 15 years. Last year I had hypothyroidism and then again this year and I had lots of stress at work (basically being bullied) and finally I went to my doctors in floods of tears because I felt so ill .

    l am old school 62 always encouraged to go to work and soldier on regardless, and I was also attending hospital after work every day to visit my father (86 ) who was ill this went on for four months so I was exhausted.

    What prompted me to go to the doctor was I was tripped up at school and smashed my face in and popped a cartilage etc. The doctor said I had actute stress reaction and just gave me time off I also mentioned i had a couple of bald patches on the back of my head again the doctor said stress. Now bearing in mind I am a strong, positive person ,very active energetic dynamic etc for me to just sit and cry shows how tired and ill I was, but this was a doctor I had never seen before new registrar so they don't know this.

    Within a month I lost all my hair the doctor said it was stress and developed Vitaligo. I am also a coeliac and have lichen planus so now on my fifth auto immune disorder. Against my principles I went private to a dermatologist and was told hair loss was alopecia possible caused by the stress and put on steroids 8 a day first week 7 the next etc. The steroids made me ill (stomach / digestion problems0 and did nothing for hair loss but did help improve my previously out of control lichen planus ( on my legs) the trouble was I still felt ill and had trouble getting out of bed before mid day (where as before I had two jobs and started work at seven am.

    I discovered this website and wrote down every thing went back and luckily saw a woman doctor who was very up to date and said I think you have Addisons disease she got me an urgent referral and I the consultant agrees I am being tested next week.

    I have been told that Vitaligo and Coeliac disease plus Hyperthyroidism are all linked I think its all to do with your auto immune system. I hope this helps anyone.

  • Hi Chapers - sounds like you have had a really miserable time, for a long time too. I am so pleased for you that at last the Addisons disease is being picked up on. Interestingly, apart from the small white patch I have on my shin (yet to be seen by GP) I also have these small red spots on the surface of my legs. They are tiny and slightly raised, don't wince, but I have picked the surface off to see if they would go. They then just leave marks on the skin. My mother has Bowens Disease (a pre-cancer skin condition) and I was concerned that this was what it is. I am off to the GP on Friday to see.

    I wish you well for the up and coming tests.

  • thanks and you xx

  • I have been told by my nutritionist that one auto immune disorder invariably leads to another and then another :(

  • I'm on my sixth so seems to support their theory.

  • Yay so much to look forward to!!

  • Brown, patchy pigmented skin is one of the signs of Addison's disease.

  • I am meeting with the specialist nurse at Kings College next week so will discuss this with her. Also seeing my GP in the morning.

    Thanks for message.

  • they did check out mys skin but I live in the garden so to speak so think its hard to tell also I have lichen planus so again skin not great.

  • Hi all,

    Just got results of tests and been in formed all okay despite every symptom of adrenal insufficiency. Had to come off the steroids they had me on Hydorcortisone 2 daily , for the test last week so not feeling good at all and eye sight terrible despite eye test that said they were fine. No hair left put on weight vitiligo, infection after infection (also Coeliac Hypothyroidism and lichen Planus) ALL auto immune problems so even I know something wrong but now tests were okay Doctor doesn't want to know. What should I do?

  • Oh my goodness that is terrible. Can you ask for a second opinion?

    It feels like they are not taking you seriously. My cortisol problem was discovered when I was on a 72 hour fast for hypoglycemia test. Have you had that?

    I really don't know what to say - I just feel so frustrated for you.

  • Thanks went back last night and asked to be referred back to Endo , so will have to wait and see where I go from there.Felt so much better on the steroids and they are still in the drawer was tempted to take them but then thought well what happens when they run out but sick of the blurred vision.Hey ho will just have to hang on in there.

  • Hi - I also get Iritis which causes blurred vision and also major sensitivity to light. I'm glad that you have asked to be referred back.

    Let me know how it goes

  • will do

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