No ACTH

Okay. The one thing I cannot get my doctor to answer me about.... I was called and told I had to get to the infusion center for a test. Went and had my adrenals stimulated by synthetic IV ACTH. My adrenals responded and produced sufficient cortisol apparently as they called the test a success. Why am I wondering why my body had no ACTH to stimulate my adrenals on its own??? I ask the doctors this and they attempt to explain again what the ACTH test is and what it does which I already get. Nobody will explain why I needed an infusion to begin with. Anyone have any idea? ?

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  • It's a test that simulates a stress response. Your adrenals are artificially stimulates as they would be if your body was either physiologically or psychologically stressed. If they increase their production of cortisol the test is considered a success and your adrenals are 'fine'. Please remember main stream medicine doesn't recognise adrenal fatigue therefore they only look at a one off response.  Adrenal fatigue if you meet a rare doctor who considers this a valid diagnosis looks at 24 hour cortisol production , this uses  a saliva test and samples are collected over a 24 hour period. This test is not available on the NHS. Hope this helps 

  • Well, I was diagnosed with adrenal insufficiency in January.  I went to our local hospital about 7:45.  A blood test was taken.  An injection in the buttocks was given.  An hour later I had another blood test.  Then I went home. I have no money- it was done on the NHS.  I am now on Hydrocortisone for life.  Still not feeling well and had really bad pains throughout the body for 3 months.  Hoping to feel better at some point.

    I had severe ulcerative colitis in 1999 and they think the massive doses of prednisolone has completely suppressed my adrenal glands.

    Good luck with your adrenal problems. 

  • I'm sorry to hear that. My daughter has low cortisol (not low enough to require HC) and we suspect this was caused by the prednisone she was given for hepatitis and breathing difficulties when she had glandular fever. Her tonsils are withered and grey since taking it, and we think other glands may have been similarly affected.

  • Thank you! I think I'm going to demand this saliva test. They've yet to even bring it up as option here.  I'm not understanding why when it seems so standard. I will request this test as soon as I see him again. If this is even a part of my puzzle to get well I need him to listen and get it done. You guys are appreciated so very much   this journey sucks and I'm having no fun to say the least.  But you're knowledge and responses are sometimes the only hope some of us have 

  • They wanted to see how the adrenals responded to ACTH. Apparently they respond well. But you have a serious problem on your hands if the pituitary does not secrete ACTH.  Have you even had an MRI or CTScan of the adrenals? And an MRI of the brain? If you are not secreting ACTH your cortisol output is in danger. 

  • bloodywell annoys me- adrenals that need stimutaling and respond are a success- what bullshit- they are not right are they or they wouldn't  need stimulating- been down this road an dmine were 217mnol- not  good enough  but was considered  fine!  I take b5 and pregnenolone now, but even so I don't think they are getting near enough cortisol for goo dhealth

  • Couldn't agree more.  All these tests they do are so unnecessary but they like to milk the system. All a person needs is a blood test of ACTH and Cortisol test. Why they had me do adrenal vein sampling test to see 'if they were right'. (rolling my eyes) this test cost me 4000 dollars. Insurance did not cover it all. She said she'd recommend surgery if I "passed" the test.  I passed it with flying colors. It merely concluded what all the basic 100 dollar blood tests confirmed for years.  There is only one way to compensate and that is to supplement w/HC. But they seem to be very reluctant in this dept, not because it's dangerous, like they get all bug-eyed about it, but because it'll actually HELP you. This is not good for business!

  • HC is said to be the way to go for either primary or secondary adrenal insufficiency--this is dogma in the mainstream medical profession. But look at the list of side-effects and then read about the problems with using HC and treating other conditions. I have only known two people who took HC long-terms and they both drank themselves to death. Having to take anything forever, no matter what the side-effects, stresses me.

  • Hello :-) no I haven't had a CT scan of the adrenals. Unless a CT scan of the abdomen can see through to the kidneys.  Because I've had a CT scan of the abdomen.  I just wondered why they called the test a success when my natural ACTH was below range and barely showed up in blood and needed the simulation test and they refuse to make me understand why I needed to have synthetic stimulation to begin with.  I have adrenal fatigue symptoms mixed with hyper and hypo his symptoms as well and would love to help my doctor to understand that I want to get to the root of this to help myself feel okay someday.  If the problem is starting in the brain I really would love to know.  I've had two MRIs of the head since this started but that is because they first thought I was stroking when my symptoms started.  

  • Have you had a pituitary/head, MRI?  If you have no ACTH, the problem is with your pituitary, not adrenal glands.  I would go to the emergency room, say you have the worst headache of your life or tell your doctor this..anything to get a look at your pituitary!

  • Yes I have has two MRIs one with and one without contrast as well as an MRA. However they said nothing out of the ordinary was seen. Those tests were done in the beginning of the onset of symptoms because the symptoms resembled stroke.  They weren't looking at the pituitary specifically so I'm not sure if an MRI to look at the gland itself would be a different kind

  • this is a very frightening situation to be in.  I am right there with you!

  • Yeah, the MRI has to hone in on the pituitary specifically. My adrenal adenoma was seen on an MRI of my lumbar spine. It was noted as an incidental finding. My GP said "oh we find those all the time, it's nothing'.  Well, it's not nothing to everyone. IMO, an adrenal adenoma is eventually going to effect you. He blamed my symptoms on aging whereas prior to the herniated disc I told him I had symptoms of Cushings, to which he laughed at me. 

  • My god. The health care system is a dangerous joke. Im so sorry. 

  • You either have a pituitary problem, or an adrenal adenoma. I had an adenoma and secreted <1 ACTH for YEARS. How did I get by? The adenoma was secreting the cortisol. I had an adrenalectomy last year, and today I have normal high ACTH. My other adrenal atrophied and it takes a lot of ACTH to make what little it does, so I do have to take HC. 

  • Hello marvelrus. I'm sorry that happened to you! The abdomen CT scan I've I've had showed nothing with kidneys unless it wouldn't see through to them. They were looking for an ovarian cyst however so should I request a CT scan of the adrenals specifically?  If you feel comfortable could u share your main symptoms because I've had severe symptoms on setting quickly within one day and nobody has ever had that happen with hoshimotos.  One day I was fine. The next dizzy, disoriented,  anxious,  palpitations,  sweating,  blurred vision, inability to recall or remember anything  among the weakness and numbness and scary stuff. It hasn't let up for 2 years and Armour isn't working but been told I'm under medicated on 30mg of Armour

  • Funnygembunni, my thyroid meds haven't worked in 5 years. On the patient leaflet for thyroid meds it says you are supposed to get your adrenals fixed first, if there is a problem. I have pointed this out to so many doctors! My symptoms are vision problems, weakness, headaches, weak leg muscles, fainting, no stamina, loss of arm pit and pubic hair, no appetite and nausea too. My skin is so dry and I feel very dehydrated although I drink a lot of water. When I feel really bad I always get terrible diarrhoea. I can't cope with any kind of stress, I shake, get confused mentally and can't solve the slightest problem. I have difficulty writing, and have no confidence to even go out. My sleep pattern is all over the place too, and always low mood.

    I didn't get anywhere near a normal temperature until I started on hydrocortisone. In the last few days I have upped my Hydrocortisone, and taking 20mg split @ 8am, 12pm and 4 PM and really feeling a difference. For the first time in years I've been able to do serious housework. I still get covered in sweat at the slightest exertion, but at least I feel I've achieved something. That's another thing, I can't cope with any kind of heat, and start to feel really ill at around 19 degrees. Profuse sweating, nausea, faintness, strong palpitations.

  • Hi helcaster

    I was interested in your post about adrenal fatique its quite strange I have all the symptoms you mention in your post,I have been ill since being diagnosed with overactive parathyroid glands.but unfortunately my doctors failed to diagnose me for about 8 wks,they diagnosed kidney infection sent me home with antibiotics! After being bedridden for wks my mum eventually got my gp to take a blood test as I had lost around 2 stone bearing in mind I only weighed 8 stone before my illness,it came back as overactive parathyroid glands!! I had to wait six wks for another blood test that came back as normal levels so I was just left I still didn't feel myself I was very fit before this I went to the gym four times a WK and did fell running and walking at the weekends, for about six months I was like you I was sweating profusely shaking could not concentrate on anything felt severely fatiqued had nausea had server pain in evey muscle and bone in my body I eventually went back to my gp but got nowhere ,,I had to change my gp in order to get sorted,after being sent to Newcastle to see a specialist I was diagnosed with CFS/fibromialgia..but to be quite honest I think I have been miss diagnosed after reading about adrenal fatigue I demanded a test for it I got a 24 hour urine test that came bk OK.....although I am on strong painkillers for fibro it makes no difference I am still unwell recently I was admitted to hospital vomiting blood and server diarrhoea,they diagnosed colitis and h piylor and I saw my rhumertologyst in feb and was diagnosed with calcification of my wrists my doc won't listen to me says all my symptoms are CFS/fibro and now he is also blaming the menopause but I only recently started to go threw that iv had these other symptoms for years!! Iv just sold my house so I am thinking of going private.thinking of getting a saliva test too

    Hope you get sorted

    One thing that grinds my gears is doctors who don't listern!!!

  • Sorry to hear all this birkie. I'm guessing you've read up on overactive parathyroids, I was reading about this myself the other night. My GP said she would check my parathyroids with a blood test, then forgot to add this in and ferritin! Hopeless!

    I've had 2 adrenal stress tests a year apart, some results were similar, but some were lower than the year before. I would definitely get this done as saliva is supposed to be more accurate than blood for testing hormones. I'm afraid fibromyalgia and CFS are sometimes diagnosed by doctors when they don't really know what's going on due to being out of their depth. I had a fibromyalgia diagnosis, and also ME, when all the time it was underactive thyroid.

    I have to say the sweating and shaking part of my symptoms started about 10 years ago, before I was diagnosed with Hashimotos. I think taking thyroid meds has worsened my adrenal function, hence the set of results being worse. I'm now self treating with hydrocortisone, NDT and T3. I just gave up on doctors in the end, I would love to be property diagnosed with adrenal insufficiency and monitored, but I don't think that will happen unless I'm admitted to A&E with an adrenal crisis.

    Get the saliva test done, I had mine with Genova.

    Do you have the armpit hair loss, and sparse pubic hair too? I have a central bald patch now, and no underarm hair for some years now, all pointing to adrenal.

  • Hi helcaster

    Thanks for the reply its great to get someone to talk to about these symptoms,,my gp has on occasions told me they have no time to discuss the problem further as I had run out of time!!! I don't appear to have lost a lot of pubic or underarm hair BUT I have lost a lot of hair on my head when I shower or brush it it comes out in clumps I have to clean my brush a lot..also when I was I'm hospital I was on steroids a high dose for seven days then I was on them for seven weeks weened off them now,, but my g p has not done any adrenal test after I came off them,i must say tho felt fantastic on them  my pain diminished and my fatique lessend but my gastro enterologyst told me I could not stay on them,because of side affects.Also when I last saw my endo she said I may have thiyrositis,,I could be attacking my parathiyroid glands but she also said it is hard to diagnose as overactivaty could be intermittent its catching the rite time on the bloods..I am definently having a saliva test done and going to see another rhumertologyst about my muscle and bone pain,as I said I have server calcification in both wrists..I did read that untreated overactive parathyroid glands can cause calcium build up in your joints I have the same pain in my ankles but they did not x- ray them!!

    Good luck with your fight!

  • Hi birkie, no problem! You must book a double appointment, if the receptionists ask you why tell them you have multiple health issues to discuss. When I had a decent GP he used to get me to book a triple. I used to type out notes for the GP, they can get really overwhelmed if you have a lot going on.

    My head hair I must have lost about a third, it's so worrying isn't it. My vacuum is always full of my hair and I have to clean out the hair trap in the shower every time I wash it. Is your iron OK? Mine is always bottom of the range, it doesn't help your hair!

    I wonder if your high dose of steroids has damped down your adrenals? I've read even steroid inhalers can do this.

    I read you have too much calcium with overactive parathyroids. Have you ever had a kidney stone? I have, I would love to know why.

    It will be interesting to see what your saliva results will be, I hope they answer some of your questions.

  • Hi

    Yes I have had kidney stones passed one afew years ago was in agony my urine looked like it had golden sand in it,but my g p said I'd passed it so no further investigation was needed,I always get kidney and water infections..Im going private when I get my equity, I need to get all these things checked out,I'm not saying the NHS are useless but when I saw my rhumertologys he never asked me to take any clothed off he never saw my knees or ankles which are swollen and very painful,I was also diagnosed with calcification of the left knee after surgery on it,consultant said I needed a replacement knee op but I was too young I was 39,, also said it was 75%athritic,,but when my rhumertologys took bloods he found no arthritis!!!! Lol,,

    Hope we both get sorted 😁

  • It's just so frustrating. I've had so many experiences the same as you! I hope you get improvements, one day.

    Hugs. X

  • Hi I found your symptom list very interesting I as diagnosed hyper thyroid 2 years ago and all my symptoms were put down to this although all through treatment weakness vision problems incredible thirst among others never dissapeared I have been of carbimazole for 1 year I still don't feel better the symptom that struck accord with me was the loss off pubic hair I demanded more blood tests from GP but she always goes down the rheumatoid route esr crp antibodys ect they all keep coming back negative except thyroid antibodys she is now getting fed up with me then my pubic hair fell out I fact nearly all down front I also have very sparse under arm hair and only have to shave  my legs every 3-4 months when I told my GP all my pubic hair has fallen out is this normal she signed and said your bloods were ok it's the menopause I did have a Cortisl test when I was hyper and this was high but I find the adrenal / pathroyd 

    Thing very confusing I would pay privately for tests but don't no were to begin

     

  • Hi Rush, I was just told my loss of pubic hair was "aging" I was only in my 40's! I think most GP's have cut referrals and tests to the bone, but I think half the time they are completely out of their depth. I even photocopied the patient leaflet from endocrinologists for her as it mentions loss of pubic and underarm hair as a symptom of adrenal insufficiency. Most of the time she thought it funny, then you get the usual oh you won't have to shave, that drives me insane!

    I don't know much about hyperthyroidism, but interesting how the vision problems, weakness and thirst remained. Have you been tested for diabetes?

    You need to do an adrenal stress test, I did mine via Genova Diagnostics, cost about £80. It's just a question of collecting 4 small tubes of saliva 4 times a day, waking, 12pm late afternoon and bedtime if I remember correctly. A courier can even collect your samples to take them to the lab, that cost £12. You get all the kit you need and full instructions, I would definitely recommend this, you also get a summary of what your results mean. Your DHEA levels are checked too. It just might give you some answers. I'll see if I can find that patient leaflet and send you the link.

  • Hi rush2112

    Like you I'm so confused I know all my symptoms are not down to my CFS/fibro,,I'm also going threw the menopause too,and now that's being blamed for my symptoms😈 but I had these symptoms before going threw the meno,,especially the overactive parathyroids,,my endo said she thought I my be attacking my glands due to auto immune illness,,I had a blood test in Oct which showed over activity but my g p always makes me wait for six wks for further testing this comes bk as normal levels,,it happened again on a blood test and again I had to wait for further testing again it came bk as normal,,he won't treat me as he says their is no indication I have overactivaty constantly he said it was prob a glich!!! Iv also had antibody test they came bk normal to😈 when I recently saw my rhumertologyst the waiting room was packed I felt like he wanted me out as soon as he could so I feel he never really checked me out properly.to have a body examination fully clothed doesn't seem right! When I go private I will feel like I can have more time to tell him my concerns😃...

    Good luck😀

  • Thank you! And yes I've been worried being the only sufferer of hoshimotos that experiences constant dizziness and blurred vision. I read a lot and saw a great detox type of informational site once.  It made a lot of sense about starting with the liver and treating each organ and gland in order to get well. It's scary when I know this issue probably didn't start with my thyroid at all. It's complex and even though my endo listens and seems to want to understand. .... I know they've been playing it safe with under dosage which is probably making me worse.  

  • have you had dark vision episodes or not been able to digest food? i think it is a low metabolic rate issue or hormones..both. i am having a terrible time now and barely eating for 5 weeks now. Loosing lots of weight , trembling, resting heart rate in the 90's and up..like i am over medicated on thyroid yet, could it be low cortisol or ? Any ideas?

  • Have you had your cortisol tested? If the scan captured your kidneys, then it should've seen the ad-renals, since they do sit atop each kidney. No ACTH is the result of two things, pituitary problem or adrenal adenoma. Many symptoms are similar to hypothyroid symptoms. High blood pressure, you can get physical signs, like a slight buffalo hump on the back of your neck, and fat pads in the clavicle and thick mid-section.  All of these things went away within two months post-op. I told the doctors for years it was effecting me, but they strung me along for almost 10 years! Yes, whoever did your blood test to reveal no ACTH, that doctor has some work to do for you.  This is not anything to pass up. This is not normal. It's dangerous because you need ACTH to signal the adrenals to secrete cortisol.  I tried NDT, but because my adrenal gland is not up to speed, I could not handle it. You should in the very least take some T4. But you need adequate cortisol to help the conversion of T4 to T3. NDT had me feeling dizzy the entire 6 weeks. I couldn't take it anymore. 

  • Thank you. I've been dizzy from day one.  Before medication of any kind. I'm going to push harder to have my pituitary checked.  

  • Fgb, 

    The level of ACTH is controlled by the HPA axis so by giving you ACTH they were able to assess the function of your adrenal glands. ACTH (pituitary hormone) drives the adrenals to secrete cortisol in a negative feed back loop. 

    When one hormone is out of balance or low, another//others will compensate. When ACTH is low, the hypothalamus compensates with corticotrophin-releasing hormone. Have they mentioned a CRH test to assess the chance of Cushings Disease ?

    If you are still supplementing Adrenal Cortex, this may have helped your adrenal gland function but will have totally skewed your ACTH test results.

  • I wasn't on any medication nor the adrenal cortex at the time of the test. And they said nothing since except told me over the phone that the test was successful.  When I asked to speak to the doctor his secretary spoke for him because apparently while he was in the room with her he couldn't get on the phone.  He told her to tell me it was fine. Asked a second endo and he proceeds to explain again what the test does. I just keep asking why I was so low in ACTH to begin with. Cannot get a straight answer. 

  • The amount of synthetic ACTH is massively more than what would be produced by the body. In my mind this test is really flawed. I've been through this myself and from saliva testing have really low cortisol. I'm taking 20 mgs Hydrocortisone just to function. I was fainting all the time and the exhaustion is overwhelming. The fact that I've lost all my armpit hair and most of my pubic hair was ignored, but this appears on a endocrinology patient leaflet about adrenal insufficiency. If your endo is a diabetes doctor he/she will be totally out of their depth. 

    My test was so messed up in the hospital, didn't get going until nearly 11 am and I was in with an elderly woman who was really frail, and 5 people couldn't get a cannula in. Sitting there watching this and being phobic of hospitals messed up my results I have no doubt. The nurse told me if I was stressed the test wouldn't be accurate! 

  • I'm so sorry for that kind of experience.  That's not cool at all. They didn't even tell me what the heck they were testing that day. Just to told me to get to infusion center and sit down. I had to read test tunes brought by nurses to figure out what in the world I was called to leave work for. If they won't address the concern about the nearly untraceable ACTH I will have to self medicate with what I think or am advised here to take as the doctors here are diabetes doctors and don't know anything much about treating us effectively.  Been started on synthroid at 25mcg. Didn't respond well so they gave me 15mg of Armour which I learned here the conversion means he actually dropped the dosage and told him the other day that a dangerous to under medicate me and the chest discomfort is scary and they say they are playing it safe with low doses.  When low doses could make me worse. They don't get that concept here though

  • What exactly was the lab result on ACTH and the range? 

  • Lab result just days <6. No range given. 

  • My testosterone is 6.67 range is 30-150. Had a doctor tell me I don't need testosterone cuz I'm a woman.  I laughed and left.  LH us extremely high.  My hormones have gone completely out of whack. And I'm only 33

  • Ok so the issue is the pituitary. Your adrenals work fine it seems as they can be stimulated. I have secondary Addison's disease. Unless your on steroids. You shouldnt have zero acth!

  • I'm not on steroids.  But had a severe flare of symptoms last week. The endo is checking blood for Addison disease. For some reason the saliva tests and a few others you awesome guys are telling me about either aren't offered here in the USA or aren't known about by these sad doctors here. 

  • Funnygembunni, if you look at the link I've sent you, you can use this private lab to get a saliva stress test done, they operate in the US too. I paid around £80 for my stress test. 

  • I will definitely take advantage of this lab. I need to know if this is a clue into the root cause of my symptoms as I'm tired of these doctors shooting in the dark while my life feels like it's ending slowly and everything is just getting harder and it's work to function daily.  I thank you so much for the link. It's appreciated and I knew I could find more constructive answers here :-)

  • In the UK Funnygembunni,  they do a courier service to collect your samples, that was £12 in the UK, but worth every penny as you know the samples will be at the lab by 9 am the next morning.

    I've done two of these tests now, and will repeat another one at some point this year. The saliva test told me that I was at the adrenal exhaustion stage, and also low in DHEA too. My GP didn't know how to interpret the results so I wrote the time, result and ranges in brackets, that way she could see how abnormally low they were. There will be an explanation with the test results, and the whole thing is very easy to follow.

    I've been taking hydrocortisone for over a year now, it will be interesting when I stop, and get retested to see if there's any improvement. Apart from trauma and living with severe pain, I had 6 years of regular steroid injections and these really can ruin your normal adrenal function. I've met people online that had Addison's disease simply from long term use of steroid inhalers for asthma.

  • Helcaster, just a word of warning.  Do not stop Hydrocortisone suddenly.  I came off Thorne Cortex for 10 days and collapsed, so had to have Saliva test immediately and go straight back on Cortex.  My son is on Hydrocortisone and this must not be stopped at all, so please find out all you can about this.  I believe Greygoose knows about this and has successfully come off it.

  • Hi J_bee, thank you for the sound advice. I do worry that I can't go 3 weeks without HC in order to do the test.

    I'm so sorry you collapsed, what a frightening experience for you. We're you able to tell the doctors why this had happened?

    I remember being prescribed 50 mg of hydrocortisone a day for a week, my then GP didn't tell me to wean off them, and I wonder of this damaged my adrenals too?

    How is your son doing?

    Are you doing well on cortex?

  • Hi Helcaster, It was last summer when I came off the Cortex to do the saliva cortisol test.  Got to 10 days and collapsed.  Literally could not walk and was being held up by my husband and daughter as we walked into A & E.  The doctor I saw said they did not now treat this and had no medication for it anyway.  I had previously heard from my Endo at the same hospital that they no longer treated with Hydrocortisone and was told at my son'sappointment previously that he thought the Hydrocortisone would cause hi more trouble than the Levo in years to come (now they tell us!).  I, actually do better on Thorne Cortex than Nutri-Adrenal and have never been given Hydrocortisone.  My son, on the other hand (Hypo-pituitarism with Septo-Optic Dysplasia) has been on Hydrocortisone since about the age of 19, when he came off of Growth Hormone. Sorry, yes, I was able to tell the doctor what had happened.  Do you have a doctor you can ask about the Hydrocortisone?  Hope you manage to find out your levels.  My son is tested without coming of Hydrocortisone, but I am unsure how this works.  Think they just keep a reasonable level while on it.

  • J_bee, so you just stopped taking your dose? I was thinking of bringing it down 5 mg every other day, and doing it very slowly, the other problem is that you are going to be without steroids for maybe 6 weeks. I've been taking mine for well over a year, and to be honest I dread coming off them.

    Was your adrenal stress test results any better for letting them "rest"

    It doesn't inspire much confidence that the A&E doctor didn't know how to treat you! I have told my partner what to look out for if he has to take me to hospital. I have leg pain diarrhoea that is like pints of brown liquid already, plus the nausea is always there. More recently I've been getting stomach cramps so how do you know?

    I'm so sorry that your son has so many problems, I can understand it would be very dangerous to take him off HC. I've read about people with Addison's disease having tests whilst on steroids, but not sure how it works either.

    I'll look up Thorne cortex as not sure what it is. My GP originally put me on HC, but she was really nervous about it.

  • Helcaster, I really don't think you should come off Hydrocortisone without guidance from a doctor. Can you see the doctor who put you on them originally? Coming off the Thorne Cortex doesn't rest the adrenals, but lowers to a base level to see if you still need to take them. Unfortunately I think I will be on them for the rest of my life. Frightening thought, as what if you can't get them. Do wish NHS would sort this problem out. Felt nauseous before I started on them, but that has gone now. This is also how I felt before I was treated at all after my sub-total thyroidectomy in 1978. I was then not put on Levothyroxine until 1997.

    Over the past two weeks I have begun to feel better from my op in February, so hopefully that means my adrenals are picking up.

    Wish you good luck with it all, but please get some good advice.

  • I think you're right J_bee, it's too risky.

    I'm glad you've found something that helps your adrenals.

    I can't believe the neglect you've had after your op, no wonder your adrenals are worn out.

    Good luck to you too, obviously on the right path now, we're much better off trying to sort our own health out! X

  • So by taking Thorne adrenal cortex I did and was taking steroids?  Oh god!  They made me feel better for a few days but I stopped taking them. I just stink at keeping up with the millions of supplements every day 

  • I've never used steroids before. I'm kind of afraid to use them to reduce my inflammation markers. 

  • I had a Saliva Cortisol test done and my Cortisol was low, so I was not taking it for inflammation, but low Cortisol.

  • Salvia testing is available in the USA. It's the only place that accepts the results. Or addisons you need a Sst or itt test 

  • Thank you! My endo says he was checking blood for Addison disease due to severe and fast weight loss. Hopefully the test you mention is the one he performed the other day. It is a blood test the tests you're referring to? Or yet another test I have to fight him to agree to perform? 

  • it will not be Addison's, but Secondary Adrenal Insufficiency, with the pituitary as the cause...

  • Not necessarily. I had non-detectable ACTH, but when I underwent Adrenal Vein Sampling and they were stimulated, my adrenal output went through the roof. It was actually more sluggish on my remaining unaffected gland. So my adrenals technically work. But the cause of zero ACTH was the adenoma. When the adenoma was removed my Pituitary immediately began to secrete  ACTH.  A scan of the adrenals are priority number one, because no ACTH is a very dangerous situation. Did they even test your Cortisol level on the same test w/ACTH? If not, that's rather bizarre. If so, what was the result? 

  • ACTH <6. Cortisol random 5.3. Range 2.5-25.0

  • You're making cortisol despite nil ACTH. That says something else in your body is making cortisol.  What time of day was that blood drawn? 

  • I agree that if your doctors already know that you cannot naturally produce ACTH, giving you the short synacthen test seems practically pointless. The problem is obviously in your hypothalamopituitary axis.  (Incidentally, how do they know you can't produce ACTH? Did you have the insulin stress test or the glucagon stimulation test?).

    I suppose that it is just about worth while testing your adrenal glands can work properly if they do get ACTH, but it seems rather theoretical.

  • I found out when my labs for blood drawn showed 《4 and the lab paper said abnormal.  Looked it up and it's definitely too low. Just really want to know why it was so low and how they think stimulating adrenals artificially means everything is fine when I know it can't be. My symptoms are horrendous and if this is a viable link I would love to take measures to narrow down my root cause to feel better someday :-)

  • If I were you I'd push for the insulin stress test. It's unpleasant but it is the gold standard test for adrenal insufficiency caused by pituitary dysfunction. It would definitely show if you have hypopituitarism. The glucagon stimulation test is also reasonably reliable. Google them.

    You are absolutely right to do all the research you can, and I truly hope your persistence will pay off and you will feel better in the end.

  • Insulin stress test. That's not the same as the sugar test they have you do when pregnant is it? Drink sugar drink and lab samples drawn at specific times?  

  • No, you take insulin which lowers your blood sugar to a point where your body is subjected to stress - a situation where the pituitary would normally produce more ACTH in order to stimulate the adrenals to produce cortisol, to help your body to cope. They sample your cortisol levels at fixed intervals to see how you're doing, and if they're very low that proves your pituitary isn't functioning as it should. At that point they would give you sugar to stop you going into a coma . . . you hope! (Just joking).

  • It's not only viable, but it is life threatening. Whoever took those tests and got the results and didn't put 2 and 2 together is 'pretending' to be a doctor. 

  • what is the immediate solution? Supplemental HC.  Go to a pharmacy and ask the pharmacist if they dispense name brand Cortef from any doctor in your area.  If so, get the name and make an appointment. If not, you can buy it online but it's generic.  I myself can only take Cortef. 

  • What is the test for ACTH? Will the NHS do it? I dont undestand why they dont measure ACTH at the start of a short synacthen test, before sdministering the synthetic ACTH

  • I only know they measure aldactone and cortisol prior during and after because I read the test tubes

  • Did you have AVS? Adrenal Vein Sampling? Did they put you out and go through the veins in your groin area right up to the adrenal glands? Or is this just an injection and blood draw from the arm? 

  • Its mainly because doctors don't know the difference between adrenal FATIGUE and adrenal FAILURE. 

  • What is my next course of action to get my doctor to realize I'm worried and want to know for sure why I had no ACTH in blood that required the synthetic ACTH test.  I've had no luck getting them to think the way I am about it.  I've had MRIs of the brain in the past two years so I don't know why my pituitary would he acting silly 

  • Tell them you want a scan of your adrenal glands. 

  • Can you explain what you mean?  Adrenal fatigue sounds treatable at home while failure sounds not so easy to treat 

  • Adrenal failure is when you do not secrete ACTH.  Addison's is an autoimmune disorder and it's when the body attacks the adrenal glands and puts them out of commission.  Adrenal fatigue is when you secrete enough ACTH but the adrenals are sluggish.  That is me, right now. My ACTH is now high, but my cortisol output is low.  That equals sluggish adrenal gland. All the B5 in the world is not going to help your adrenal gland if you don't produce ACTH. The pituitary is detecting the presence of something else that is secreting cortisol therefore it is not going to produce ACTH. 

  • Okay so what tests do I request to rule out either one

  • You really need a scan of your adrenals and an MRI of the pituitary. I'd start w/the adrenals, and you do not need contrast.

  • Good luck, its almost impossible to get a doctor to treat you properly.  They follow the 'guidelines' because they know that the BTA and GMC will not hesitate to sue then under fitness to practice rules!

  • Agreed but I know if I have some sort of major heart issue due to their lack of proper treatment I'm going to be doing a little legal suing myself. If we were able to sue them for quality of life reparations I'm sure we would be rich :-)

  • As I said 'Good luck'  because the BTA and GMC have an answer for everything that makes it look like there is a) nothing wrong or b) It must be someone else's fault!

  • Definitely been through the ringer and back with the lovely medical system. Which is why I research myself and get advice here and take what I learn and demand things from my endo. He's quite patient I must say. He's the fourth I've been to.  And the first three were horrible and even asked the million dollar question about if I think I'm depressed or need counseling.  I laughed and politely asked for my Co pays back.  Like any crazy person would LOL

  • i was told my stim tests were normal, when only 1 out of 4, were in range.   I feel terrible and don't believe they are normal.  Why do they even have ranges for these tests, when they are so unimportant ?  Makes no sense to me.

  • Hi there- I have had a similar experience. A leading endocrinologist, who is also Chair of the UK Pituitary Foundation, has said that a short synacthen test does not always pick up a pituitary problem and that a glucagen test is required. Hope this helps. 

  • i was told, that  the glucagon stim tests is used to determine growth hormone levels,  only..

  • Hi there again. I believe it can also pick up low cortisol although the only real way to find out is to have an insulin stress test. However, blood must be taken during the IST when blood sugar levels are below 2.2. I was insulin resistant so they couldn't get my blood sugar levels low enough and abandoned the first test. The second time they got it down but - before the nurse could take blood - the sugar level rose again. The nurse chased after the doc but he had gone and so she took it anyway! I didn't realise the relevance of this at the time. When they told me my results were OK - I told them that my blood sugar had risen again by the time they took the blood - but they didn't reply!! I hope to see the endocrinologist at Sheffield in the next couple of month - I don't have a date yet - but I will let you know how I go on if you would like.

    Best wishes, Christine

  • yes, please do. I too have high blood sugar and wondered how this would work. What symptoms do you have now? I have a strange roll of fat on my abdomen and lumpy squishy tummy..i should say i did. For 6 weeks, my stomach has not been digesting my food and is very sore..like gastritis and gastroparesis. Now, upon starving, my lumpy fat, is almost gone. I get episodes of darkening vision, trembling and high heart rate, severe muscle pain episodes, that have gotten me diagnosed with fibromyalgia and chronic fatigue syndrome..lol!! That is so much BS!! I have hashimoto's disease too and had none of this until i developed that. My head is weird. I had to stop smoking cigarettes because i would nearly pass out and would start having involuntary twitching and movements, upon the first drag. I have blurred vision and an off center, lopsided feeling. I don't leave the house much, in years due to the discomfort getting worse. Do you have any of this.

    Oh..i have empty sella syndrome, a squished pituitary, that showed up at the same time that i went hypo and gained over 20lbs in 2 months. 2009, is when i developed type 2 diabetes, normal mri...2010 my pituitary blew out, after the sudden weight gain. my life sucks. i miss enjoying life. I have lost all my friends, i am not :me: anymore and am best alone, when i used to be very outgoing. My blood fats, trigs and cholesterol are very very high and i am barely able to eat. I believe this is all low GH and Cortisol, which makes a very low metabolic rate, not allowing for proper utilization of fats, sugar etc? Does this make sense?

  • Also, i was told by the pituitary center at Mass General in Boston, that many who are not healthy enough, like i have become, get the Glucagon Stim test, which works well too. Except, of course if you have high sugar anyway.

  • I would urge you to read this recently issued by the Society for Endocrinology endocrinology.org/policy/do... .

    Page 5 has recently been amended, although it does not go as far as the people who have been persistent in asking for changes since 2010 would like, hopefully it will give people the ammunition to convince their endocrinologists/doctors that further testing is required. The information sheet states:

    The short synacthen test is a very reliable instrument in diagnosing adrenal insufficiency

    arising from both adrenal and pituitary disease. Where adrenal insufficiency arising from

    pituitary disease is suspected and the short synacthen test results do not match the

    clinical suspicion and symptoms persist, then your doctor may consider to perform an

    alternative test to assess adrenal function, such as an insulin tolerance test. 

    Would suggest you read all of the information to ensure you are fully aware on how to proceed. Good luck.

  • This link is very informative re adrenal insufficiency.

    rarediseases.org/rare-disea...

  • Has anyone here had their vision go dark and you can feel your pupils moving? Does anyone else have their stomach not digest there food well?

  • If your body needs an increased Cortisol level, e.g. in response to stress, in the normal situation, ACTH hormone produced in your pituitary gland (located under your brain) secretes ACTH into the bloodstream. This travels to your adrenal gland. If your adrenal gland is OK, it will produce a burst of Cortisol which enters the blood stream and is measured at the end of the test which you described. The ACTH test is to see if your adrenal gland is OK. If your adrenal gland produces a burst of Cortisol in response to the injected ACTH, sufficient to raise your blood Cortisol to a certain level, your adrenal gland is considered normal. However, as you might have gathered, if your pituitary gland, is diseased, it may not be able to produce enough ACTH to make your adrenal gland work properly, resulting in low Cortisol. That situation (low Cortisol) is best ascertained using the Adrenal Stress Index, which measures: A) Four serial Cortisol levels over a 16 hour period and B) Two measurements of DHEA based on saliva samples collected at four-hour intervals. The trouble is, NHS endos don't like this test despite the fact that it is the Gold Standard adrenal test. Work that one out! What I am getting at is this: the ACTH test that you had done, only measures the capacity of your adrenal gland to produce Cortisol, it does not measure the capacity of your pituitary gland to force your adrenal to produce cortisol. In short the ACTH test you have had done, does not measure your pituitary function. The pituitary gland can be knocked out by chronic mercury toxicity arising from mercury leakage from dental amalgam. An adrenal Stress Index, e.g. from Genova lab can sometimes help to identify this, particularly if demonstrating a low Cortisol, level and high DHEA level. There are thousands of people who experience such toxicity, but, like the ASI test, it is not recognised. For further details on this topic (Not saying that this is your situation) you may want to Google "Amalgam Illness"

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