I have very low cortisol, and I'm waiting for further tests. I suspect my deficiency is caused by a medication, but it might be autoimmune. I'm just speculating. What I really want to know, is, is this deficiency always incurable or is there the possibility it can be cured? I really don't want to be on steroids for the rest of my life. If the medication has caused it then would I simply go back to normal upon stopping the medication? Any input would be greatly appreciated. This is causing me a lot of worry.
Toni
By the way when I said adrenal deficiency i meant adrenal insufficiency!
Hi
I too would be interested if anyone has experience of this. I was diagnosed as adrenal insufficient in December which docs believe is linked to medication. I have stopped the medication and wondering if my cortisol levels will improve and if so how long does it take?
I had low cortisol in 1965... I have been seeing doctors now and again since. I started a discussion a few days ago desperate, because it is very difficult to find a doctor who has the patience/knowledge/good intention to put you right. If you start taking hydrocortisone (I would not take any other steroid because the World Health Organisation recommends HC for adrenal insufficiency or Addison's disease (the autoimmune adrenal insufficiency). The last endocrinologist I visited two days ago seems to be willing to help me to come out from my 30 months of taking HC. HC can only be taken for some months to give the adrenal glands time to 'recuperate' and be able to produce enough cortisol. If HC is taking longer, it just puts the adrenals to sleep so to speak and it is very dangerous; instead of making them to produce more cortisol than before they just shut up. How much cortisol you have to be on and for how long is a very dangerous path, and learning by making mistakes:
taking too much or for too long... is bad. You need a doctor who checks your ACTH, your cortisol levels properly. It your adrenal insufficiency is autoimmune, the complications are more complex. At this point, after I think I had an Addison's crisis and went to Hospital where I was diagnosed with Addison's disease in June 2015, (Addison's crisis!!!) I still do not know if it was that or I was very sick from having a pneumonia. I have had 3 pneumonia in 4 years... I have not had one since June 2015. I had a vaccine after the second pneumonia, to no avail. I do not want to scare you, but it is difficult. My recommendation is to ensure that the doctor understand the complexity of the adrenal conditions : adrenal insufficiency and Addison's disease. The symptoms, in my case are fairly clear. It is Addison's but having HC for too long apart from getting osteoporosis, putting weight on, and shutting up your adrenals is not ideal. On the other hand, to have HC for six to eight months, and then wean off and have the cortisol levels checked and see if your adrenals are responding well producing more cortisol that before, is a good way to go. But there are other problems. Having the cortisol checked with a blood test is not ideal because cortisol should be checked during a 24 hour period to see the levels four times a day. NOT ONLY the cortisol at 8 am in the morning.... when it is ALWAYS high at that time of the day. I do not live in USA but I know you have all those issues with medical insurances... ideally, if you can afford it, the best is to visit a Holistic doctor, functional doctor, integrative medicine doctors...(cortisol saliva test 4 times during a period of 24 hours). It could be that you are also hypothyroid?. Are you young? Problems with the adrenal glands can give physical symptoms as well as mental symptoms. My partner suffers from the second, and I suffer more from the physical symptoms. My TV broke yesterday and I will not have the new TV connected until tomorrow morning, so I had plenty of time to explain some of the things I have been through since 1965. I am not young but I take supplements (the right ones I hope), eat the right food, eat organic food, no not use chemicals in my house and try to avoid chemicals as much as I can outside my home. I hope I have helped you Krazy Kitten. It is confusing. I tried to make it as 'digestible' as pos...
Not to take away anything from what Monsie has said (which is about "primary Addison's disease" - which is rare, btw), it is also possible to have "secondary Addison's" (which is even rarer!). This (secondary A) happens when your adrenals are perfectly ok but the problem is that they are not getting sufficient (or even any) instructions [ACT Hormone] from the pituitary to produce cortisol. So measuring your ACTH is a good pointer, which may be followed by a Synacthen [synthetic ACTH) test.
I have secondary (and a few other hormone deficiencies) because of a non-functioning pituitary tumour [benign, as they almost always are]. Since I FINALLY got a diagnosis and went on hydrocortisone (= synthetic cortisol) four years ago, I feel like the proverbial million dollars. I have had no adverse affects whatever.
The Addisons Society and the Pituitary Foundation have lots of useful advice and support if it turns out that you need either.
Best wishes.
Thank you for the info!!! I had the short synacthen test today, which indicated that my adrenal s are not functioning properly, however they said the result could have been worse, and I have been put on 15mg hydrocortisone a day. I'm in the UK and this test was on the NHS, I am awaiting another appointment with the endocrinologist and further tests. I have contacted a private holistic doctor who I am lucky enough to be able to afford, because I really don't want to be on long term steroids if it is at all avoidable. My symptoms started when I started a medication called valproic acid and I have found evidence online that this medication suppresses adrenal function. I will also add that a couple of months ago my naturopath told me i had adrenal fatigue, and he prescribed me an adrenal glandular from an animal source which for a few weeks made me feel much better, but stopped working.
Hi. I am curious which medication your doctors think may be linked, however I know this is a very personal question. The medication I am wondering about is valproic acid. There is evidence online suggesting that this suppresses adrenals. But I'm still waiting for that all important meeting with the endocrinologist, so I can pick their brain.
Thank you. My reply further down was also directed for you.
My reply further down was also directed for you. I forgot to say. I also have underactive thyroid which was diagnosed years ago. At this point I do not know if I have an autoimmune disorder or not.
Hi
It was analgesic pain killers and amitriptyline for back pain/sciatica. After a few months I started getting low blood pressure and dizzy spells, which resulted in me fainting. I was initially diagnosised with postural hypertension but the doctor want more tests and sent me to an endocrinologist, I got a ATCH stimulation test which showed I am producing very low levels of cortisol. I was put on 30mg of hydrocortisone per day. The nurse said they believe that the strong analgesics have caused damage but I have not had any tests or anything to prove. I have a appointment next week with the consultant and will hopefully find out more about cause, and hopefully duration as the since taken the hydrocortisone I have been suffering from bouts of anxiety which I have never had before.
Hi
I apologize for my long comments to your information on your adrenal insufficiency. I tried to cut corners. But it does not work. I avoided to talk about the Stim test that I have had twice with different endocrinologists. The thing with tests is that the interpretation varies a lot depending on the attitude of the doctor. My last Stim test in November 2017 the endocrinologist at the time did not say much, but I can read after so many years of dealing with my adrenals... and I saw that my cortisol did not increase the say it should after 30 and 60 minutes injection. But she did not say much other than I need ANOTHER STIM TEST...!!! in a few months time. My new endocrinologist seems to be more understanding and willing to devote more time to his wretched woman (me). He has given me lots of tests and has wanted to discuss with me my 'hypothyroidism' and the medication for it. I am glad you can afford to see a holistic doctor. I did not know you lived in UK. I did in the past. My partner from 1992 is from London so I know about UK a little bit. I am from Barcelona in Spain and English is not my first language...
One more thing, very important: this information about having adrenal problems due to a medication (Valproic acid in your case) is new to me. I am going to look into that now because it is a new avenue I never new of.
I am glad you did not get fed up with the last reply
monsie
Hi
I know about the primary and secondary adrenal insufficiency and the autoimmune thing attached to Addison's disease. In my experience, because it is all in the hands of the 'interpretation' of the doctor at the time, I am a bit cynical about their comments/diagnosis. My latest experience in that field is about the 'reading' of my last MRI. I have a pituitary micro adenoma. I forgot the size now. This is another GREY AREA subject to doctors interpretation... how big a pituitary micro adenoma has to be to cause secondary Addison's disease? Or does it have to be a macro adenoma? Have you been taking hydrocortisone for four years?. I hope not. I do not want to mislead you but one thing doctors in Australia where I live seem to agree on is on the length of time a patient should take HC. HC shuts down the message the pituitary gland should send to the adrenals to produce cortisol. I have been on HC for two and a half years and finally found a doctor who wants to help me to come out of it. Other doctors have told me how bad it is to take it but did not tell me how to do it, they did not want to get involved in 'keeping one eye on me whilst tapering'. The doctor I saw last week has put himself out to give me and my partner the support we need to do that: advice, querying symptoms. Do you have plans for any surgery in the immediate future he asked me, just to mention one of his worries.
I am always worried I may confuse you all.
Let me know if you need any clarification.
Keep well.
Hi
Yes, adrenal insufficiency can be cured, but it is a painstaking work and professionalism and dedication from an endocrinologist is needed. The patient has to be not too long not to short time on HC. Not too much cortisol (not above 20 mg/day). Cortisol has to be monitored I think with the Stim test and other tests are required. If blood pressure is too low, it is a sign of Addison's (I a not sure if it is a symptom of adrenal insufficiency). But it is like when a patient with hypothyroidism gets low metabolism. It can be adjusted but it is painstaking job as well.. Controls, tests, also doctors have to be interested in making the patient aware when cutting down on medication (tapering), of some symptoms like nausea, getting giddy when standing up, belly pain, catching colds, flu easily, pneumonia. Those are the things I have to watch now that I am reducing my HC intake. I have gone from 32,5 mg/day to 17,5 mg/day very slowly (-2,5 mg/day every 4 weeks). I met a woman on the train one day who told me that her son had been diagnosed with Addison's and he was in and out of the hospital all the time. I have been treating myself since June 2015 and I haven't had pneumonia since. I had the flu vaccine for what it is worth and watched the weather changes very closely, making sure I'd not catch a chill. Now with the new endocrinologist, I hope to be able to come out of if. But if it is autoimmune... well, then I'll have a problem. It remains to be seen. My partner had tuberculosis when he was a boy and nobody has bother to check him for what it is called 'dormant' TB germ) I think it is called. My partner also has adrenal insufficiency and he is very pale and slim, looking like a real Addison's sufferer. But I could never have a test for him on account of his knee TB when he was a litthle boy for some years as there were not antibiotics then.
It is not really very likely that the HC is causing the anxiety. HC is the same as cortisol, but swallowed rather than produced naturally. The problem that some people have is with managing the dose rate: when your body produces cortisol naturally [a daily cycle, boosted when you are ill] it is a very gradual process whereas taking a tablet does a sudden boost and then decay. So you might try taking half the dose but half the time between doses.
Cortisol is a natural steroid, so you and everyone else has been "taking" it all your life. The dosage you've been given is just enough to 'make up the numbers' to the normal level. The big concern people have about steroids is when they are added on top of the natural production and that certainly does cause problems. In your case, your adrenals may gradually begin to recover function so you will need regular tests to ensure you don't overdose.
Please listen to your professional endocrinologists who have done years of study and experience in precisely this area. Your condition can be precisely measured and managed. Please don't be taken in by self-proclaimed naturopaths - see en DOT wikipedia DOT org/wiki/Naturopathy. "Adrenal exhaustion" doesn't exist - see wikipedia again. Your short-term recovery was very real but not sustained - see "placebo effect".
Yes, I understand what you say and I do not take the 17.5 mg/day HC I am now on (I am tapering), all at once. I have been takin HC it 8 am and 2 pm. I'd like to be able to split it more throughout the day, but I am not sure if it would affect my sleep... I go to bed at 9 pm because if I wake up always about 3 pm, I get up for an hour, drink a chamomile tea and listen to the radio in the dark in the living room. Then, I go to bed and sleep until 6 or 6.30.
am.
I am hypothyroid and waking up at 3 am is perhaps due to the thyroid gland problem.
Doctors have their hands tied sometimes. Vested interests... health matters influenced by the politicians... I have seen 7 endocrinologists since I went to hospital with an Addison's crisis in June 2015. They all have told me different things, one said I should stay on HC because I was hooked on it. Another one said I was like a drug addict and I needed a mental assessment (which I have never had). I know that I have osteoporosis and taking HC medication does not help with that. I have put on a lot of weight as well, 20 kilos l since 2015 (is it the HC? the hypothyroidism? or a combination of the two). None of the seven endocrinologists have sorted me out. It seems that the last one I saw last week has the intention to spend some time checking me out and watching me whilst I wean off HC. Adrenal exhaustion, term used by naturopaths is the same as adrenal insufficiency, term used by endocrinologists and GPS.
[This doesn't apply to Krazy Kitten, it is just a reply to Monsie].
The effect of the adenoma depends on where it is as well as how big it is. I suspect [but don't know, I'm not a doc] that big ones have more effect (by affecting a larger area) than small ones but the position could matter more. A big one (> 25mm) causes first loss of peripheral vision then eventually total loss of sight because it expands onto then damages the adjacent optic nerves, So really that is the only good reason to have surgery - to save your eyesight. It doesn't undo or reverse the damage to your pituitary though there have been some cases of partial recovery.
By the way, in case anybody doesn't know "stim test" and "synacthen test" are the same thing.
Hi
Thanks!
The MRI I had in Dec 2017 shows my micro adenoma.is 3 mm. The surgeon who removed my meningioma on the same side of the head in 2007 wants me to have another MRI in May. He did not comment on having surgery... when I saw him in December 2017 after the MRI. I have dry ARMD in the left eye since 2006. The peripheral vision is still ok. I am 80 years of age, very well looked after by myself and the help of my partner. I look 65 in spite of my adrenal situation and hypothyroidism.. My last but one GP said out of the blue in my last visit to her 'You are 80 now'. If surgery does not improve the pituitary gland, then it is not worth having it. Do microadenomas become macroadenomas?
Thanks for your information
First, I am not a doc so the best I can do is suggest some questions you might ask.
Yes, I believe that a micro will gradually grow to become a macro but they are very rarely malignant cancers so the growth rate is quite slow, like ten years. But "your mileage may vary".
When I had my (30mm) macro removed, the surgeon (and the endo) told me that I could expect my sight to recover [it has!] but not to expect any other improvements - it could happen but very unlikely. As I said, the synthetic hormones have worked really well for me so I have no complaints. Except that I know it will gradually grow back :-(
I suspect that the reference to your age is the "risk/reward equation": surgery is risky so how many extra years of your life [and at what quality of life!] will you gain in return for that risk of dying now. But don't take my word for it - ask!
You shouldn't assume that the docs arranging your MRIs actually spoke to one another! I strongly suspect that the one in May is to see if the meningioma has come back and has nothing whatever to do with your pituitary. Maybe you could ask whether the menigioma people could look at your December MRI to see if that gives them the info they need?