Never knew the prevalence was this high! It gets more interesting, the symptoms of growth hormone insufficiency mirror those of classical brain damage i.e. fatigue, cognitive problems, depression, etc. Could your tiredness be explainable and correctable? Did you always believe your libido issues were due to depression? The answers may be only a few tests away.
Nice to read this.. "The brain injury charity Headway has recently applied to the Government health watchdog NICE to recognise the condition. It has yet to hear back."
yes you are correct, I am surprised ABI people are not tested and monitored as a matter of course. I was advised of this prior to my operation, and tested afterwards.
However from the moment after my considerably major operation I suffered fatigue loss of balance memory loss perception of space and distance problems after 3 months this began to sort itself out, I did not go into endocrine failure until after the radiation treatment, when all the problems were x'd by hundreds, I could not imagine being more ill....Good side is that after two years symptoms began to subside, now I accept that I will live with some symptoms
I suppose on the one hand it's inexplicable, but we should keep in mind that brain research is still in it's infancy and there's a great deal of ignorance amongst health care professionals about complications such as this. Perhaps 30 years ago this type of research wouldn't have been possible because of so few of the more severe brain injury survivors, the types that most likely would have PTHP according to research. So we as survivors have to deal with the age live in, it's an unfortunate, but we have to keep in mind that western medicine is a luxury.
talking to my surgeon he said one of the earlier complications was inflammation after an operation, which hasn't been a problem for me that last two times. Back in 1986 when my father had a hemorrhage he was ill for about 4 weeks with swelling before he slowly came round. Since finding myself an ongoing patient in this field I wounder if even the medical profession shy away
Problems with the pituitary gland can be devastating. I have a friend,Andy, who was taken aside at a party by a guy announcing he was a doctor. This doctor advised Andy to see his GP without delay. He explained that Andy's hands and feet were disproportionately large and it could be a pituitary gland problem..........He was correct, and Andy was subsequently found to have a benign tumour pressing on the gland......He is awaiting the operation for its removal. Meanwhile, he has been constantly exhausted and depressed,
I didn't mention that the pressure from the tumour has caused the gland to continue producing the growth hormone which should have ceased years ago. Andy is age 34.
it sounds as though too much growth hormone was produced, as we all need this throughout our lives but in decreasing amounts once past puberty. This is one of the hormones I have via injection each day, without it I am in constant pain, and at risk of bone deterioration. Growth hormone works with testosterone to produce the immune system. When my system crashed so did my weight and became ill with just about everything that was going around, all happened so quickly
Yes, sounds like gigantism, but what's seems to be more common following brain injury are hormone deficiencies related to the pituitary gland. I take it that since your tumour was close to the pituitary that they thought that it might be affected and that you should be tested? I'm wondering how I can get this investigated, my injury was a fair distance to the pituitary, but there was midline shift that affected one of the ventricals, I wonder if it could still have been affected indirectly. Regardless of the nature of the injury, they're quoting 40% of TBI survivors have some PTHP, that's enough evidence to satisfy my curiosity and have this investigated I feel.
no my tumour is not close to the pituitary gland but in direct line to it. Problem as I see it is that 'going in' especially at the front can cause trauma to the gland. The 'killing' of my pituitary gland came with the radiation. I think gigantism comes when there is too much growth hormone at the time of puberty. As a matter of course all hormones were tested after my operation, and then following the radiation I was referred to an endocrine consultant who monitored all hormones from Jan 2008 until around Feb 2009 when I went into failure, must say during this time I felt my consultant was a little barmy as though she was looking for patients. The when i was least expecting it, I became ill, to be honest I thought I must have had some form of cancer as in a matter of a couple of weeks I lost 3+ stone and went down with all sorts of illnesses, hot flushes like you could not imagine; boiling hot to the point I felt I was on fire then freezing cold heating on max with 3 duvets on and still cold. To my horror all body hair disappeared and I grew breasts. I was so frightened it was like I was the lead role in a horror film and was not in control of my body. An issue I have was services appeared to focus on women even testosterone replacement talked about the woman's loss of a sex life. I am so happy to be out the other side even if not cured; I cannot begin to explain how frightened I was
Interesting and thanks for sharing your experiences on here. What you say about your pituitary being affected even though your tumour isn't close seems plausible as the blood supply network might be shared by both regions. I don't think I've ever had anything so dramatic happen, I've had great difficulty with sleeping, not being able to fall asleep, waking during the night then not being able to wake up in the morning which I think might be related to corticol hormone thats controlled by the pituitary, I take anti-depressants and some research suggests that they work by elevating or supressing corticol hormone levels which in turn regulates alertness/activity. I also drink loads and urinate loads so that might point towards anti-diuretic hormone issues. So many unanswered questions from my point of view after all these years of suffering. That's disgusting to hear about the female-bias in endocrinology, I've always thought that females get taken more seriously than males when it comes to healthcare, I've encountered some blank looks on occasions.
yes I also suffer from problems with my sleep, I either cannot stay awake or cannot sleep, 4 am is a good friend to me as by then I'm so knackered I can get to sleep
I feel most alert in the evenings instead of during the day and often wake up during the night too after about 4 hours sleep when it feels as though it's time to get up.
I was very interested to read about your sleep issues...I suffered from an aneurysm in 2001 and have suffered with several side effects since but have been in denial for a long time!...basically have huge sleep difficulties so your post made interesting reading...do you take anything to help you sleep? my GP spent years trying to tell me I was suffering from depression, as you will know, sleep deprivation can give you very similar symptoms to depression!...it is so grim and I find it so frustrating ...
I've had sleep problems ever since my injury. I went through a very stressful period in my late teens when I couldn't sleep at all, the problem would become self fulfilling as I'd convince myself that I wouldn't be able sleep. It happens now to a lesser extent, I can only think it was caused by genetically programmed frontal activation with my lobes not being able to deal with all the stimulus which led to overload. For 9 years I took an antidepressant called sertraline afterwards and stuck to an exercise regime which really helped me to sleep more profoundly...although I've noticed that I'm still often too sleepy in the mornings which is counterproductive. In the past year I've been waking up at night on a regular basis and leaving me jaded the whole day...I've just recently stopped taking the antidepressant because i want to experience reality again. So the long and short of it is that antidepressants can help you to sleep especially in the short term, but I'd try everything else before trying as it comes at a price, it really sends your body the wrong message...that sleep isnt natural. Just my experience. You've hit an important point, depression is a symptom of an unhealthy state of body and mind, but doctors seem to latch onto the depression bit and don't investigate the root causes. I believe that there are physiological causes of depression e.g. damaged blood supply networks to critical brain areas of mood that are currently neglected in favour of covering up symptoms...so as to make us dependent on these drugs for life and let big pharma pocket the profit.
thank you for this - you make alot of sense brain injuries are so personal but I wish I had addressed my obvious cognitive deficits and embraced them 10years ago..but I guess better late than never although I feel more and more misunderstood the older I get and the sleep deprivation is definitely not helping..but I am so lucky to be alive as I only had a 2% chance so I guess onwards and upwards is the way ahead..take care and glad you are off the depression medication luckily I have managed, on good advice, to stay clear of this for precisely the reasons you give...
Superb information, it's good to see Headway campaigning for recognition of these little-known about conditions.
Some important information that you or your doctor may not be aware of.
Study -> Marta Bondanelli et al. (2005)
"PTHP [post-traumatic hypopituitarism] is observed in about 40% of patients with a history of TBI, presenting as an isolated deficiency in most cases, and more rarely as complete pituitary failure."
"Severity of TBI seems to be an important risk factor for developing PTHP; however, PTHP can also manifest after mild TBI."
"Over the last few years, 5 major studies on PTHP have been published, on a total of 344 patients (258 males, 86 females, M:F = 3) who had suffered TBI at some time between 1 month and 23 years preceding the studies. The prevalence of hypopituitarism was 42.7%, ranging from 28 to 68.5% in the different series evaluating patients who recovered from the acute phase post-TBI."
"Traumatic brain injury accounts for approximately 10% of patients attending the accident and emergency department and occurs in about 200-450 people per 100,000 of the population. Head injuries vary in severity and can have a number of consequences beyond the initial accident. These involve problems with cognition, seizures, gastrointestinal, cardiovascular, and musculoskeletal problems and also neuroendocrine dysfunction. ‘Neuroendocrine’ means problems with the endocrine (or hormone) system that originate from the brain " possibly the Pituitary gland or Hypothalamus.
Neuroendocrine problems are mainly due to pituitary dysfunction. These can be due to alteration in the acute phase (first few hours and days), with temporary changes in blood hormone levels. These early changes usually correct with time and post injury medical management. There is also evidence that long-term neuroendocrine dysfunction resulting from permanent damage at pituitary or hypothalamic level can occur during a traumatic brain injury.
A number of trials worldwide have looked at this issue and there is no clear consensus in the medical literature how common pituitary or hypothalamic dysfunction occurs, in patients following traumatic brain injury. It is observed, that it is more common in severe traumatic brain injury.
As traumatic brain injury is common, but pituitary dysfunction following this is a rare but serious consequence, we would advise that you contact your GP if you have any concerns and experience some of the following symptoms:
mild headaches, feeling sick, problems concentrating, poor memory, irritability, tiredness, problems sleeping, lack of appetite, sexual and fertility difficulties, depression, an increased thirst and excessive urinating.
Your GP may consider referral to an Endocrinologist if appropriate."
I heard about this from a doctor yesterday. Ive never been able to go the full way when having sex since my injury and ive had girls think i didnt really fancy them. This is labido. Im always tired too.
It's refreshing to see honesty on these forums, it is a health site afterall and i'm sure others have issues they're afraid to talk about. If I was you i'd see your GP/neurologist and see if you can get referred to an endocrinologist. Be prepared to fight because they're always reluctant with things that aren't standard practice.
I have just found this and this may suggest what I have been asking for a couple of weeks are my thyroid problems related to my aneurysm. My pituitary levels have fluctuated greatly over the last 18 years and I have been trying to find out if they are related. I have an endocrine appointment at the end of the week so I am definitely going to ask now.
I have just found this and this may suggest what I have been asking for a couple of weeks are my thyroid problems related to my aneurysm. My pituitary levels have fluctuated greatly over the last 18 years and I have been trying to find out if they are related. I have an endocrine appointment at the end of the week so I am definitely going to ask now.
I have just found this and this may suggest what I have been asking for a couple of weeks are my thyroid problems related to my aneurysm. My pituitary levels have fluctuated greatly over the last 18 years and I have been trying to find out if they are related. I have an endocrine appointment at the end of the week so I am definitely going to ask now.
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Hi, from a new member
Brain waves and Binaural beats
