Secondary adrenal insufficiency

Posted , 6 users are following.

Hi wanted some advice please. Yesterday i went into hospital to test for addisions disease as i was reffered by my cardiologist he suspected due to all my symptoms .

When i was injected with the ACTH hormone Within an hour I felt my symptoms improve dramatically, my muscle weakness, loss of balance, heart problrms, blood pressure etc all improved. Told the doctor in the ward this stuff is helping me dramatically and for the first time after a very long time i have managed to find something that has improved my symtoms.

As the test was specifically to rule out addisions and cortisol level were fine they could not prescribe me that or anything similar. is that right ? based on the fact they know i have been trying to find a problem and finally something has clearly worked for me and was life changing.

they said that is up to endocronolgy to do more tests so they said they will tell my GP and now i have to go back from there. the foctor thrmselves could have reffered me there amd then or the very least fir another day. i dont think i had stressed enough how much it had helped me, at this point that felt like a life saving drug but i was sent home.

I am finding it difficult to walk and for the first time in a long time i was able to walk normally. After researching i see that there is secondary adrenal insufficiency which matches exactly what i have i can not beleive it.

just wanted some advice what should i do could it be that, can my gp prescribe me anything quickly or would i have now wait for a encrologist. thanks

0 likes, 27 replies

27 Replies

  • Posted

    I know exactly what you mean, my experience was practically identical - see below.

    You probably know this much already: the ACTH ("synacthen") injection is a synthetic hormone that matches the ACT signal hormone that your pituitary should be sending to your adrenal glands to request production of cortisol. Your description says (a) that your adrenals are fine and produced cortisol as requested but (b) it says that your pituitary is not ok, it is not doing its job. (Same as mine).

    What you can and should do now is go back to your GP and repeat what you have written here. The first thing they should do a blood test* for cortisol, thyroxine and gender-related hormones (eg testosterone for men) and prescribe HRT, at least hydrocortisone (10mg at 08:00, 5mg at 13:00, 4mg at 18:00 - an hour earlier for all if that's when you start your day). When got onto HC, I felt like the proverbial million dollars. If they show any reluctance, ask them to sign a document saying that they realise that you are at risk of suffering an Addison's Crisis, which is fatal if not resolved immediately. The second is to get you referred to an endocrinologist PDQ.

    The second thing you need to do is go for an eye test and ask specifically for a "field test". If you have loss of peripheral vision, you need a hard copy of the test result to show the endo.

    • The Pituitary Foundation has a table of reference values for these hormones, here are the most important ones:
    1. 9 am cortisol: 180 to 620 nmol/L
    2. Free T4 (Thyroid) 11.5 to 22.7 nmol/L
    • Posted

      thanks for your reply, i tried to contact my GP however she is away atm. so i spoke to another doctor over the phone and as they have not received any reports or anything from the hospital they cant do nothing till then atleast. so gonna ring them again today. this is so strssfull, i am so weak as it is and my blood pressure is so low.

      my question is why would hydrocortisone help if my cortisol levels are normal


    • Posted

      and also do you know anything naturally i can do or eat to possibly help me a little in the mean time.

    • Posted

      Now I'm confused. I read you as saying that your cortisol levels were normal after getting the ACTH injection, not before. If your cortisol levels are normal generally then no, hydrocortisone would definitely not help.

      But that just begs the question: why did they do the synacthen test? The only reason to do it (as far as I know but who am I to ask!) is to explain low cortisol.

      1. If your adrenal glands don't produce cortisol when sent the ACT hormone, then you have Primary Addison's.
      2. If they do (as yours did), then you have Secondary.

        But none of this applies if your cortisol is already normal! So why do it???

      Maybe your GP (partner) is thinking that it'll all be in the letter from the hospital soon so why bother doing another test. Especially as the letter will arrive before the results of another test. I really don't see what a GP can do without evidence of what is going on. It needs a specialist.

      All you can do meantime is read up and make sure you and those around you know what an Addison's Crisis looks like so you can call an ambulance and make sure they are told.

    • Posted

      Sorry, no. There is no shortage of quack remedies for "adrenal exhaustion" out there. If drinking ultra-expensive distilled water in a tiny bottle or sticking needles between your toes keeps you going, then do it - it might give you a few weeks of mental relief from symptoms but it won't fix the real problem.

      Safe but probably not effective unless you are deficient is bananas for phosphorous, brazil nuts for selenium. But only likely to be useful if your diet is already lacking in veg, especially green veg.

    • Posted

      and don't forget the eye test.

    • Posted

      Thank you truly for your reply and help

      My cardiologist referred me to get the test done as I have many symptoms that could indicate that, especially the hypotension and after some blood tests and urine samples he wanted me to take the test.

      I was told the before the test my cortisol levels were normal, (400) and shot up to (700) afterwards. is that normal?

      All my symptoms that I had for months improved dramatically, I just could believe it. I finally thought this is it i have found the cure.

      For the first time in a very long time i was able to walk with ease with no balance problems. every single symptom improved including my sex drive which had been totally dead for months.

      I dont know what to do. I spoke to a doctor over the phone and told them again and will receive a call back tomorrow i think. hoping for a refferal to endo.

      In the meantime my symptoms are so severe i can barely function, my blood pressure is so low, no matter what i do i cannot raise it. my muscles are weak and with a load other cardiovascular symptoms , I am truly deteriorating.

      I feel i need ACHT, at this point in time it seems like the only thing that would work.

      What do you think? any thoughts

      My cortisol levels (400) and shot up to (700)

    • Posted

      You definitely need to see an endo asap. I'm just an amateur: we all have different ways of coming to terms with our condition and my was was to read whatever I could about it. I haven't come across a case like yours but that just means that I haven't spent ten years in medical school! Before I got onto Hydrocortisone, my cortisol was about 20 so it really did give me a huge boost. My BP was normal (too good to be true, in fact).

      ACT hormone is produced naturally by your pituitary: it is a tiny signal hormone that tells your adrenal glands when to produce cortisol. If it weren't doing its job (like mine isn't but yours is), your cortisol would be down in tens or twenties. Nobody is going to give you synthetic ACTH when you have plenty of the real stuff. An endo might be able to spot why it gave you a boost but I don't have a clue.

      But I'm fairly confident that whatever you have, it is not primary, secondary or even tertiary Addison's.

    • Posted

      Spoke to GP over the phone and told them. They said thats very odd and kind of dismiss what i am saying they cant just refer me without seeing me in person.

      Feel like im falling at the last hurdle after such a long quest to find what wrong.

      I am really struggling physicslly declining and unable to keep going in and out. But going to have to force myself.

      I still can not beleive how dramticaly the acht improved my symptoms and i was discharged from hospital without further investigation as my bloods were fine.

      I had not felt that well in months, within 30 minutes it was life changing, My low blood pressure had improved to normal and nothing else had worked at all to increase it. I felt almost euphoric, my muscles and breathing improved. also wierdly my conpletely dead sex drive restored. But my bloods for cortisol were fine so nonone know what it is.

      Clearly there is a life threatening hormone problem and feel like doctors are not going to do enough quickly enough to help me.

      Going have to wait till thursday to talk with GP and even then i dont know how long it will take them to refer me.

      Do you have anymore ideas what kind of problem it could be from my symptoms and reaction.


    • Posted

      Hi Shaz34922

      I don't know if you have managed to get any answers but have you the doctors looked at your Aldosterone levels? It controls blood pressure

      It's production is stimulated by ACTH...this could be why you felt so much better after the Short Synacthen Test.

      I have Hypopituitarism caused by brain injury. So basically I've had to do a lot of research myself.

      I won't complicate this post by going into too much detail but I have problems with Secondary Adrenal Insufficiency

    • Posted

      Good comment. Synacthen [Synthethic ACT Hormone] test is mainly used to verify that the adrenal glands will respond to a 'request' for cortisol. So it could be that everyone was focused on that aspect (guilty as charged, m'Lud) and overlooked this side to it.

  • Posted

    Rody999 makes a lot of sense. My $0.02 is that you should latch on to a great endocrinologist and forget about GPs. Addison's Disease; Secondary Addison's Disease (which I had for 18 mths) and Addisonian Crisis are wat too specific conditions for a GP to adequately deal with.

    Asking a GP or a B-grade endocrinologist for advice could result in poor decision making all around and a longer time for you to feel well. I know this, having been attended to by a well known but untalented endocrinologist whose poor care of me saw me move to a better endocrinologist who took 6 months just to get me to where I should be if treatment by the former was satisfactory.

    • Posted

      Feel like I am in a nightmare, got nothing left to fight anymore.

      So I was suppose to speak with a GP today over the phone but they just left me a message saying

      "They are not convinced due to my blood results that I need to see a endocrinologist so they have not bothered to refer me"

      I cant believe this is happening, having ACTH changed my life and now i have to convince them that is helped because i cant prove it with my blood results.

      The problem Is I cannot see a endocrinologist with a refferal.

      A cardiologist arranged to have this test done for me because my symptoms, and also which may be very important my salt levels were very low and i was dehydrated although i eat enough salt and drink enough everyday.

      Based on my salt and water levels and my other results in the previous posts do you have any idea why i would respond so well to ACTH ?

      I need medication asap or anything that may help, i feel like i have not got enough time.

    • Posted

      The comment by the GP that ""They are not convinced due to my blood results that I need to see a endocrinologist so they have not bothered to refer me" is typical of GPs. If your result falls within a range they think all is well. But that is not always the case. If you can't get a referral from one GP, try another to give the referral. Make sure it's to a highly regarded endocrinologist, even if he/she is not local.

      In the absence of ACTH supplementation, did you or do you have any of the following symptoms:

      Extreme fatigue

      Weight loss and decreased appetite

      Darkening of your skin (hyperpigmentation)

      Low blood pressure, even fainting

      Salt craving

      Low blood sugar (hypoglycemia)

      Nausea, diarrhea or vomiting (gastrointestinal symptoms)

      Abdominal pain

      Muscle or joint pains


      Depression or other behavioral symptoms

      Body hair loss or sexual dysfunction (in women)

      If you answered "YES" to many of the above then you most likely have Addison's

      Disease (or Secondary Addison's Disease).

      If so then I would not waste time.

      I would present myself at either another GPs office this weekend or at the ED of a

      major hospital (or A&E as they call it, if you're in the UK or Australia) and tell them

      of your symptoms; of your recent dose of ACTH and how much better you felt and

      that you must see an endocrinologist asap but your, it seems inexperienced GP

      could not treat me nor did he think I should see an endocrinologist.

      Good luck.

    • Posted

      thanks for your help

      Im sat at home not bothered to do anything about it, have not got the physical strength. kinda just accepted the inevitable. now its either fight for quality or try to stay comfortable which i am trying to do. i have not got the capability to even go to my GP anymore.

      extreme fatigue

      weight loss

      when injected depression was gone, i had never felt so happy in my life and sexual function increased dramatically.

      low blood pressure which is actually onr of my main symptoms, i am struggling to raise regardless of what i eat

      soon as acth was injected my blood pressure went up. confirmed by the nurse as she took my blood pressure

      used to have big bald patches in beard few months ago but they grew back.

      i have no pain or diarreah vomiting

      i just wish i could get acth, i would be than happy have that for the rest of my life to deal with my symptoms. it was pure pleasure when i was on it

    • Posted

      Shaz (and Barney), there is just no evidence to support the theory that you have Addison's in any shape or form. Your baseline cortisol is smack in the middle of the normal range. Clearly your pituitary is routinely producing natural ACT Hormone as it should. Your adrenal glands are responding to that signal hormone as they should and producing the major hormones. You don't have Addison's.

      So how to explain the miracle effect. Placebo is certainly a possibility but we should start on the basis of straightforward cause/effect. The synthetic ACT hormone stimulated your adrenal glands to produce surplus cortisol, i.e., natural hydrocortisone. {Meaning that it was not the ACTH injection that made you feel better, it was the rush of cortisol induced by it that did so}. Cortisol/Hydrocortisone is an anti-inflamatory, so maybe that is the underlying cause. But what do I know.

      So where do you go from here? An endocrinology consultant will see you privately if you can raise the fee for an initial consultation. They might give you a letter for your GP. But they won't give you a diagnosis without a lot of expensive blood tests.

      Otherwise, drag yourself to A&E.

    • Posted

      "Bald patches in beard"... Have you been tested for testosterone?

      I'm really surprised by the rest of your post because the cortisol rush you got from the Synacthen injection wouldn't last more that 24 hours..

    • Posted

      thanks for your reply

      yh that it what makes it a mystery for the doctors, as my bloods were fine they do not want to refer me for further investigation despite my claims.

      it was deffently not placebo, i was told prior that i would not neccesecirly feel anything so didnt expect anything at all. forgot about it and sat browsing on my phone. then all of a sudden symptoms just drastically improved, it was almost euphoric how i felt i could not beleive.

    • Posted

      yh i have had many big bald patches. they were so obvious everyone always used to point it out to me so i had to clean shave. one time it had taken for about 2 years for a patch to grow back.

      nope i have no been tested for testosterone. if i was low on testosterone could that alone be the cause for all the symtpoms ?

      the feeling and improvement lasted about 4 hours, from injection.

      thanks for your help

    • Posted

      I haven't come across anything that worked that fast. When I got onto hydrocortisone, it took a couple of weeks to get to feeling 100% but the improvement became obvious fairly soon. But days, not hours.

      Yes, I agree about placebo, you said that your BP came up and no sugar pill will do that.

    • Posted

      Low testosterone has a number of effects apart from the obvious lack of sex drive. It also causes anaemia {says my Endo}, which seems to be news to most GPs {says my Endo!}. It could explain your symptoms, I suppose but not the ACTH response...

      Quick test: have you still got underarm hair?

      I'm afraid I can't see why a Synacthen test would have the effects you describe and I suspect that your GP (who knows infinitely more about it than I do, eve if it is not enough) is stumped for the same reason. ACT hormone is only one of the signal hormones sent by your pituitary. It sends an entirely different signal hormone to your testes to tell them to produce testosterone. There is another signal to tell your thyroids to produce thyroxine and another to your breasts to produce milk {yes, it can happen in men and non-nursing women too, if the pituitary goes haywire}, and another to get your bones to grow {which again can happen after adolescence due to pituitary problems, big jaw and big hands are the first signs}. One litle pea-sized gland telling the heavy mob to sort out the rest of your body 😃

    • Posted

      fatigue and a lack of enthusiasm is typical of Addison's Disease.

      That said, low level depression (over a period of years) called dysthymia may also be present

      I suggest you see a good endocrinologist who will confirm or deny Addison's or similar disease. If he denies it then seeing a psychiatrist regarding dysthymia would bot hurt. Good luck!

    • Posted

      I agree with yr view for Shaz to see an endocrinologist, who will run expensive but informative blood work.

    • Posted

      Barney, Shaz's baseline cortisol is right in the middle of the normal range. Whatever he has, it is not Addison's (or Cushing's!).

      Dysthenia wouldn't explain his low BP, or why it responded in some unknown (to amateurs!) way to the Synacthen test. Placebo response is just about possible but as a general rule, a placebo only produces a subjective response, an improvement in perceived symptoms. There is a measurable change in brain activity but typically none in the actual physical condition. Given all that he has told us, we should assume that his condition is real until he has had thorough blood work.

    • Posted

      You make sense. Blood work results ideally should be interpreted by a specialist and not a GP or PCP (as the Americans call a GP).

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