Hello. Sorry for lack of intro but time is tight at the mo. I'm due to see an endocrinologist on Wednesday who is going to suggest operating to trim down/remove an enlarged adrenal gland. I do not have confidence in him - he doesn't know about EM and so cannot see my adrenal problems (enlargement and high stress hormone levels) in the context of my EM. This is not his fault. My 'common sense' view is that after many many years of 'creeping' EM with its blossoming in 2000 (I got the Millennium Bug!) it is unsurprising that an adrenal gland has become enlarged, due to the demands being put on it through me being in a continual heat-stressed state. My common sense tells me that removal of a gland would simply put even more demands on the remaining gland.
My questions are
1. whether anyone else has with EM has also been diagnosed with adrenal problems,
2. are there EM bearers who have had MRI/CT scans whose adrenal glands have been seen as normal/enlarged, and
3. are there any EM bearers who DON'T have high stress hormone levels, or who have clear information about their stress hormone levels?
I may take time to get to grips with the etiquette for the group. Please have patience.
First of all welcome Toad to this forum. I found your post extremely interesting to myself! First of all it's a case of what came first the chicken or the egg!
What I would like to ask you first is did they see a tumour on your adrenal gland or was it just enlarged? If there is a tumour have your metanephrines been checked as well as your cortisol levels as I assume you mean cortisol being the stress hormone?
It's interesting to me as I had my left adrenal gland removed last May. I did have a tumour on mine. When the histology was done it came back as hyperplasia, which really means enlarged from what I remember. I think my tumour was a pheochromocytoma as I had symptoms of that as well as the Cushing's Syndrome caused by high cortisol levels. The endocrine lot denied it, but my renal man that I saw first due to high blood pressure was convinced at the beginning that it was and still is. My noradrenaline was nearly 4 times higher than the highest it should be as well as my cortisol being high. When I looked up hyperplasia I couldn't believe how much it was me right from birth! So, I had obviously had a problem all my life. My EM only started around 10 years ago and was completely ignored by doctors until this year! I still haven't been officially diagnosed with EM.
I was hoping that when they removed my adrenal gland that my EM would go away and at first it did seem better, but now it's worse than ever. Cushing's Syndrome causes capillary fragility and I really thought that was the problem with my feet and legs at the time, as when I had my other symptoms my feet and legs were worse. As for putting more demands on your other gland I wouldn't have thought that would happen as our bodies are wonderful at sorting themselves out so that one gland works as well as two, just like people who have a kidney removed the other one soon learns that it has to do the job of 2.
I am actually starting to wonder though if my other gland is now over producing as my blood pressure is going back up again, after being normal for quite a long time after the operation. I have read that quite often if you have hyperplasia in one gland then it might happen to the other one. It's all very complicated this hormone stuff!
Of course, I might be completely wrong about all this, lets face it even doctors aren't very good at it. If I am wrong I am sure somebody on the forum will correct me! I am currently seeing a dermatologist as my GP just didn't know who to send me to, at least he has heard of EM so that's a good start. The other trouble with me is that I have other things that can cause EM so that makes it even more complicated.
Thank you for your welcome and both responses so far.
Yes, the chicken & egg saying came to my mind over the past few weeks. My adrenal gland was seen as being enlarged in 2009. Regular scans have shown it unchanged. I had another scan a couple of days ago, the results of which will be available on Wednesday. We will see if it has changed. My stress levels HAVE increased over the past year but I put this change down to my having to carry increased heat-stress through joints becoming more arthritic (and needing more warmth). For decades I have been getting away with as minimal as possible clothing because of EM being so easily triggered. I wrote all about this change last summer for my GP and EM specialist to see at my annual reviews. I asked for a 3-fold ‘step-change’ in help, including an increase in the Temazepam available to me. My 3 suggestions were not taken up – benzodiazepines are even more tightly controlled these days because there is such a lively black market in them, so this decision was based on political posturing rather than clinical need! I tried to get a topical gel made up but that didn’t materialise (ketamine was in short supply, I was told!) The third ‘bright idea’ I had was to have a nasal stent fitted – my facial EM isn’t helped by very narrow/occluded nasal passage. My GP thought this would bring me pain and the risk of infection. I accepted this judgement.
Noradrenaline (not cortisol) levels have been seen as “high-but-not-too-high” since 2009. I last had the delightful tests in April and was told that for the first time my metanephrine levels were high. I reckon that they will take this new information as a sign of a tumour rather than mere enlargement and will be advising resizing/removal.
As I say in my profile, the fact that my endocrinologist has no understanding of EM does not inspire confidence. I need a second opinion from one who does. Does anyone know of such a medical practitioner?
My blood pressure has never been a problem.
I have adapted pretty well to life with EM by becoming a control freak! I stay off my feet as much as possible, get exercise through swimming and an exercise bike and maintain a social presence through relatively sedentary activities – snooker and especially bridge. I perform yoga every day. I get SO much support through friends and groups as well as my family. I get DLA and receive the support of a Personal Assistant who helps me pace myself by taking on lots of everyday tasks that would significantly trigger my EM. I have also had psychiatric input for 20 years, and am due another dose in the summer.
sheltielife said:
First of all welcome Toad to this forum. I found your post extremely interesting to myself! First of all it's a case of what came first the chicken or the egg!
What I would like to ask you first is did they see a tumour on your adrenal gland or was it just enlarged? If there is a tumour have your metanephrines been checked as well as your cortisol levels as I assume you mean cortisol being the stress hormone?
It's interesting to me as I had my left adrenal gland removed last May. I did have a tumour on mine. When the histology was done it came back as hyperplasia, which really means enlarged from what I remember. I think my tumour was a pheochromocytoma as I had symptoms of that as well as the Cushing's Syndrome caused by high cortisol levels. The endocrine lot denied it, but my renal man that I saw first due to high blood pressure was convinced at the beginning that it was and still is. My noradrenaline was nearly 4 times higher than the highest it should be as well as my cortisol being high. When I looked up hyperplasia I couldn't believe how much it was me right from birth! So, I had obviously had a problem all my life. My EM only started around 10 years ago and was completely ignored by doctors until this year! I still haven't been officially diagnosed with EM.
I was hoping that when they removed my adrenal gland that my EM would go away and at first it did seem better, but now it's worse than ever. Cushing's Syndrome causes capillary fragility and I really thought that was the problem with my feet and legs at the time, as when I had my other symptoms my feet and legs were worse. As for putting more demands on your other gland I wouldn't have thought that would happen as our bodies are wonderful at sorting themselves out so that one gland works as well as two, just like people who have a kidney removed the other one soon learns that it has to do the job of 2.
I am actually starting to wonder though if my other gland is now over producing as my blood pressure is going back up again, after being normal for quite a long time after the operation. I have read that quite often if you have hyperplasia in one gland then it might happen to the other one. It's all very complicated this hormone stuff!
Of course, I might be completely wrong about all this, lets face it even doctors aren't very good at it. If I am wrong I am sure somebody on the forum will correct me! I am currently seeing a dermatologist as my GP just didn't know who to send me to, at least he has heard of EM so that's a good start. The other trouble with me is that I have other things that can cause EM so that makes it even more complicated.
I had written a load of stuff here and then my internet went down! So, it's getting too late for me to say anymore tonight now, I will have to reply tomorrow.
Hello Toad,
I too have had adrenal issues, however, my Cortisol levels are too low. (I am also Hypothyroid). I had an MRI done, and it was normal. My EM started at the same time that I started having symptoms of low Cortisol and low Thyroid hormones. I do believe there is a relationship between the EM and low hormone production.
My daughter is 10 years old her cortisol is very high. We went to see an endocrinologist but she only discussed the type of foods to eat. She is dx with EM since March 2015.
although my level is not high, cortisol the the bodys stress hormone and if you consider the sever amount of stress EM outs on your bosy Im not surprise some patients have elevated levels
Back in 2007 my Doctor diagnosed me with adrenal insuffiency, this happens after you exhaust your adrenals, he gave me small doses of Cortisol to bring them back up.
I have had EM since 1986…
Thanks to all who are contributing. I will be short of time this week so will not be able to contribute as much as I would like. The replies make sense in the context of the relationship between EM, stress hormones and adrenal glands put succinctly below:
A “Dr. Hans Selye, MD, took the rats at various stages of their ordeal and dissected out their adrenal glands. He found that the adrenal glands responded to stress in three distinct stages. In the initial stage, the adrenal glands enlarge and the blood supply to them increases. As the stress continues, the glands begin to shrink. Eventually, if the stress continues, the glands reach the third stage, which is adrenal exhaustion.
Back in 2007 my Doctor diagnosed me with adrenal insuffiency, this happens after you exhaust your adrenals, he gave me small doses of Cortisol to bring them back up. I have had EM since 1986...
Hi Toad, yes woke up a long time ago, mind you what a dreadful day I have had! I just couldn't possibly write on here all the things that have gone wrong today regarding the NHS and home care etc. So, it won't be tonight that I write anymore I am really stressed which doesn't help.
I actually have adrenal insufficiency and so I have to take hydrocortisone to replace what my body isn’t making. I also have Hashimoto’s/Hypothyroidism which all fall under the endocrinology/autoimmune umbrella. From an MRI perspective my adrenals look fine but they essentially don’t work (produce any stress hormone) which is why I’m on the hydrocortisone. Knowing what I do about the adrenals and having to deal w/ so many docs. myself you might want to get a second opinion, or even third and fourth especially if you are unsure. You know your body better than anyone and sometimes you just have to trust your gut. I don’t know if I can be any help but if you have any questions feel free to ask. I hope you are able to find some answers!
Hello again, everyone. Thanks again for your help this week. I was right all along not to have confidence in my local hospital – I found out on Wednesday that there has been and still is no renal specialist there! The good news is that my rt adrenal gland is about the same size as last year. The bad news is that my metanephrine levels have shot up 9-fold so I am being referred to Sheffield. For the first time my BP levels were ‘a little on the high side’. I guess I will be helped to lower these levels, and if that doesn’t worked they will recommend removal of the gland.
Can anyone help me shed light on
Will high levels ‘naturally’ decline as the gland gradually becomes exhausted? - so removal may be unnecessary?
When adrenal insufficiency sets in what is life like/how is life different? What affect does this have on EM in particular? What symptoms prompt the need to supplement insufficiency of stress hormones? What effect do these supplements have on EM and what impact do they have on life in general? What are the downsides/side effects of supplements? Should the prospect of a possible removal, in time, of both adrenal glands worry me? It doesn’t look like stress hormone production can be taken up/stepped up by other organs.
The release of stress hormones is part of the fight or flight reaction that is part of our defence to threat. Without adrenal glands it would seem to make sense that EM would get worse because blood-flow to the extremities is reduced in the flight or fight response. This fits with Rachel’s belief is that EM and LOW hormone levels are linked, and we also have sheltilife reporting her experience that following removal of a gland her EM is now worse. Maybe if she is right that her remaining adrenal gland is starting to over-produce then her EM might lessen in intensity (as blood is sent away from extremities to vital organs/tissues), but also that her BP will increase?
Hi Toad, Sorry I never did get back to you after my quick response on Monday, the main reason being it’s been a bad week altogether.
I must respond to you now as you are saying that your blood pressure is going up now and that they might give you medication for it. Whatever you do don’t take beta blockers! The reason I say this is that if you have a pheo a type of tumour on your adrenal gland then taking beta blockers could be very dangerous indeed. I didn’t know at the time that I had an adrenal gland problem but in the 90s I was given a beta blocker for high blood pressure. I went into anaphylactic shock and was very lucky to survive. I have since found that it’s very common if you have a pheo and take a beta blocker that you will be allergic to it! Instead the best medication is an alpha blocker.
I am no nearer to finding out if my other gland is over producing. However, my GP thinks it might be and has had to increase my alpha blockers this week. As for what happens if both glands are removed you are correct there are no other organs that can make up for this. What it means is that you have to be on hydrocortisone for the rest of your life, which comes with it’s own problems, but I am sure not as bad as dealing with over production of hormones due to your adrenal glands. The difference is that taking hydrocortisone they know the dose required unlike when you have an adrenal gland that is over producing.
Hormones all being connected makes it very difficult to understand exactly what’s going on. I know I said my EM has gone a lot worse since my gland was removed, but it might not be due to that. It may well be that it’s just going worse as it has done for 10 years, on top of which I have other health problems that might be the cause of it going worse.
Thanks, sheltilife, for you time and care. No apology needed. Turns out that propranolol (beta blocker) has been available to me as a helper for about 10 years. The last time (prior to yesterday) I put in for a prescription for it was July 2014. I have pretty well free rein with it and it DOES help reduce blood flow to my extremities. When the weather gets past warm I find myself reluctantly turning to it cos it makes sleep possible. But it also brings more pain to my arthritic joints and reduces my aerobic capacity. I know cos I swim regularly.
Who knows what lies ahead. My focus turns again to the so far impossible task of finding a chair I can achieve more than a few minutes of comfort in before starting to overheat. I have not known comfort since the last millennium. I have a working chair and a social seat. The former is a raised Lloyd Loom chair and the latter is a dutch photographer’s canvas stool, but I have nothing I can relax in. If/when I can achieve an ability to relax for 10 minutes or so I will start meditating again. I know it will help my stress levels, but for years now my metabolic rate has gone in the opposite direction whenever I have tried to meditate because I start overheating.
I also aim to trim my sails a little to try to be kinder to my relentlessly high stress levels. My aim is to get those levels down. Hey ho!
Hi Toad, Well if you can use propranolol you haven't got a pheo! So, I don't blame you at all for taking it, I only wish I could! My husband had atenolol after he had a heart attack and he always had cold feet and hands! Of course, this was a major problem for us as he always wanted the central heating up and I always wanted it down! It's a good job we had twin beds, as he would put his electric blanket on even in the summer. Can you imagine what that would have been like for me! I really miss him since he passed away last November, but that is the one problem I don't have now as I can keep the rooms cooler.
Toad said:
Thanks, sheltilife, for you time and care. No apology needed. Turns out that propranolol (beta blocker) has been available to me as a helper for about 10 years. The last time (prior to yesterday) I put in for a prescription for it was July 2014. I have pretty well free rein with it and it DOES help reduce blood flow to my extremities. When the weather gets past warm I find myself reluctantly turning to it cos it makes sleep possible. But it also brings more pain to my arthritic joints and reduces my aerobic capacity. I know cos I swim regularly.
Who knows what lies ahead. My focus turns again to the so far impossible task of finding a chair I can achieve more than a few minutes of comfort in before starting to overheat. I have not known comfort since the last millennium. I have a working chair and a social seat. The former is a raised Lloyd Loom chair and the latter is a dutch photographer’s canvas stool, but I have nothing I can relax in. If/when I can achieve an ability to relax for 10 minutes or so I will start meditating again. I know it will help my stress levels, but for years now my metabolic rate has gone in the opposite direction whenever I have tried to meditate because I start overheating.
I also aim to trim my sails a little to try to be kinder to my relentlessly high stress levels. My aim is to get those levels down. Hey ho!