Can adrenal deficiency be cured?
Posted , 6 users are following.
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
0 likes, 28 replies
Krazy_Kitten
Posted
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.
Roddy999 Krazy_Kitten
Posted
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".
cool_catalan Roddy999
Posted
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.
cool_catalan Krazy_Kitten
Posted
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
cool_catalan Krazy_Kitten
Posted
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.
Roddy999 cool_catalan
Posted
[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.
cool_catalan Roddy999
Posted
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
Roddy999 cool_catalan
Posted
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?
Roddy999
Posted
Update to this because my claim that "the only good reason to have surgery [is] to save your eyesight" is only true if you have a "non-functional adenoma", one that stops the signal hormones from the pituitary to the adrenals/thyroids/bones/breasts/testes/whatever.
It is not true is you have a tumour that is causing hyper-cortisol (Cushings), hyper-thyroid (secondary), hyper-HGH (acromelagy), hyper-prolactin (affects men as well as non-nursing women), hyper-testosterone (secondary), whatever. I believe (but don't know) that these need surgical intervention.
cool_catalan Roddy999
Posted
Thank you very much
If I understand well, there are functional and non-functional adenomas. My GP gave me a prolactin test out of the blue for which the endocrinologist at the time (only a few weeks ago) was not happy... my prolactin levels were not high. But how can a patient know if one's adenoma is functional or else? How is that investigated?. I would like to know.
Roddy999 cool_catalan
Posted
Functional adenomas are (unfortunately for the people who have them) a lot easier to spot as the effects are rather obvious. The pituitary is pumping out signal hormone because the feedback loop is broken - like a thermostat. See all the hyper conditions I listed in my "update to this" above.
The non-functioning type is just a slow decline that a GP is very unlikely to spot: an average GP will see just one case in a career. As you are being monitored by an endo now, I really don't see any reason for you to worry.
Your prolactin level should be low, surely? It should only be elevated in near-term and post-partum women. The reason is to check it just in case it has been triggered. I'm sure they checked your thyroxine and cortisol too.
cool_catalan Roddy999
Posted
Back from town.
I cannot not see the ("update to this" above), so I cannot click onto it. You mention hyper conditions which is not my case is it? In my case I am 'hipo' if I understand well.
Thanks for your input.
cool_catalan Roddy999
Posted
Sorry I missed your reply yesterday. I go to bed at 9 pm to be able to sleep 8 hours or more every night.
I only see one Mr Tange neurosurgeon for the meningioma (that has no signs of returning and queried the pituitary micro adenoma when I showed him the MRI results which show some 'calcification' and other bits and pieces in the area where I had the surgery in 2007.
The GP who said 'you are 80 now', did it out of her good will as we were not discussing my adrenal problems at the time (last time I saw her). In fact, apart from giving me the prolactin test I think it was called, she always said to me that she did not know anything about Addison's disease and the like.
Gracias! (I am from Barcelona of all places...) glad to be at the other side of the world these days.