NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › Endocrine issues and EDS
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Sunshine.
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June 21, 2012 at 4:03 pm #233
Give My Daughter the Shot!
ParticipantI have a handful of questions about this:
Are EDS and hypothyroid common comorbid health issues?
Is it always hypOthyroid that is associated? I haven’t seen any posts regarding hyper. I’ve seen hypo only.
Is there any meaning around the timing of the thyroid ‘blowing up’ in ones face?
Mine ‘went’ a few years ago, was right around 80 when discovered. That’s dangerously high, especially during pregnancy. Boy was I tired. I thought I’d just ‘take it in stride’ even though I wasn’t thrilled about it and felt better once it was properly managed. Awhile later (as well as for the past couple/few years), I noticed chronic suffocating exhaustion and could only imagine attributing it to my thyroid. My thyroid is, now, always up or always down (even with bloodwork every other month) but not by much. Genetic doctor mentioned CFS. Anyway…
I was told that if my thyroid is giving me a problem then I am a wimp because thyroid is relatively benign and common issue. KNOWING that I am NOT a wimp, I was left confused by what is causing such multi system malfunction. Can EDS just wreak absolute havoc?
Is there any correlation between when the thyroid ‘goes’ and entering a profoundly downward spiral?
Any other thyroid info, as related to EDS, would be much appreciated. I’m trying to figure out healing, immunosuppression, etc. Basically, I want to know what is causing the BULK of my dysfunction so that I can slave away toward a maintenance plan. THERE IS SO SO SO MUCH WRONG! My efforts are currently so scattered that it’s like I’m perpetually chasing my tail.
Thanks for any info you might have 🙂
June 23, 2012 at 7:06 am #2471PalominoMorgan
ParticipantMy mothers thyroid went during her second pregnancy. Mine seemed to go then too. Tested hypo 6 months later but follow up tests have been all over the “normal” range, including almost high. Based on your description I wold suspect Hashimoto’s.
And whoever told you to suck it up regarding your thyroid is an idiot. Society would never tell a diabetic to suck it up because their body didn’t make enough insulin. There is a great thyroid site. I believe it is Real Thyroid Help. Try googling for that.
Hugs.
June 30, 2012 at 4:25 pm #2499Give My Daughter the Shot!
ParticipantHi and thanks for info. I’m stuck wondering if exhaustion is from thyroid or CFS or EDS. It makes it tough to know what to even work on. My endocrinologist was talking over my head about how some people have more sensitive thyroids. On and off balding. Migraines and regular headaches (my good endocrinologist that I had to move away from) told me that there is brain swelling with hypothyroidism and it could cause headaches (if I’m remembering correctly). Same here, regarding second pregnancy when it happened. I never know what the heinous symptoms should be attributed to hence go nuts trying to figure out how to manage the nightmarish array of daily symptoms. Thank you for your info. It means so much!
July 1, 2012 at 1:40 pm #2502Barbara
ParticipantHi
I don’t know if this helps to add clarity (or further confuse matters!) BUT, even though I have symptoms of hypothyroid – the hair loss (ooer everywhere!), low basal temperature, cold intolerance, constipation, weight gain, tiredness, dry skin, etc., I DO NOT, according to the blood tests, have hypothyroidism!!YET I have extreme fatigue, so either my blood tests are wrong, OR this fatigue is an entity on it’s own. So many of our symptoms are common to CFS/ME, in fact that’s what I was researching when I stumbled upon Dr Diana – thank goodness I did!
Regards
Barbara
(UK)
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella (Oct 2002) Fully Blown Empty Sella (Oct 2004); Whiplash Associated Disorder (WAD); Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Vitamin D deficiency; Ehlers Danlos (EDS) type 111; and now Osteoarthritis!July 1, 2012 at 2:39 pm #2503Give My Daughter the Shot!
ParticipantCAUTION: HAS BECOME A LITTLE LONG WINDED
Hi Barbara, Thanks. I do, VERY MUCH, wonder about the overlap – regarding INSANE FATIGUE! I am definitely hypothyroid and levels were 20 times what was the HIGHEST NORMAL RANGE and 200 times over the lowest normal range -they thought my fetus and/or I might die. I felt horrible; dragging myself around and could barely move -even to breathe. Terrible. I’ve now been told that the ferocity of onset for me probably destroyed my thyroid’s function and it wasn’t likely to be functional again on its own. I had an incredible endocrinologist (prior to moving) who was trying very hard to ween me off of synthroid (since I was postpardum hypothyroid by definition). Literally, back to back babies – and, yes, I know that has taken its toll on my body and organs. HERE’S THE DEAL, I am obscenely exhausted and yet my thyroid isn’t profoundly out of whack. My thyroid being what I thought, for quite awhile, must be the culprit of the exhaustion portion of my misery.
The source of my exhaustion almost has to be complex. My genetic doctor mentioned CFS and I’d previously wondered just how on earth bad could fibromyalgia be! I guess the EDS can be exhausting too. Now, logically, what do I try to maintain FIRST to salvage what little I have to work with? See my mind-boggling dilemma?! Like goal setting – what goals do I set? Where the heck do I start.
I have the same confusion with headaches and migraines. Are they a TMJD thing? Is it thyroid related (the knowledgeable endo told me that hypothyroidism causes brain to swell causing headaches). What and how do I treat? What is causing it? Where do I start? I am so ‘beat down’ that I HAVE TO WORK SMARTER AND NOT HARDER. Which is the smarter direction? Where do I begin with goal setting? How do I maintain or (as genetic doctor said) delay degeneration?
Truly, it’s the same confusion with EVERYTHING!! Neuropathy, what to do? Do I even worry about the fibromyalgia? Who cares about the heart now since it’s had it’s time in the spotlight. What human being has a brain that is equipped to deal with all of this crap WHILE THEY ARE LITERALLY LIVING IT!! If that’s not bad enough LIFE IS LIKE A BOX OF CHOCOLATES, I NEVER KNOW WHAT I AM GOING TO GET!! It changes up on me! Ugh! Layers, it never goes away – until the next nightmare symptom commands just a bit more of my attention. How on earth am I to come up with a plan of attack? What on earth do I ask my PCP to start with? What can I maintain that will give me the most relief/maintenance/delayed degeneration? What’s first?
Does it matter that I’m trapped on the toilet for days? If I randomly vomit, I have no idea whether I’m actually sick or not since my body is such a disaster that it freezes me, burns me, launches me into completely unprovoked sweats, forces me to sit, won’t allow me to grasp things, ticks-twitches and jerks, won’t do hardly anything that my powerful willpower tells it to do, AND FAR MORE BETRAYAL THAN I CARE TO NAME RIGHT NOW. When/How am I supposed to care about a mere symptom when there are such a multitude each day. A 5 day long migraine – a problem?- or onto the next set of horrors?
I chase my tail, that’s all! I’ve tried to pretend it away, very unsuccessfully I might add. I’ve tried forcing myself to do things that my body won’t allow – and my body shut down further and burdened me with a HEAVY set of additional horrible reactions to my imposition of the will of my brain. What did I force myself to do, you ask – things like picking up a barrette and a few other weightless items off of the floor. Trying to do a few dishes or a load of laundry. Things that it made no sense to me that my body would not do!!! I’ve tried telling myself – oh, that’s ok! Like in the movies where the comedian stands up after being run over by a few dump trucks; has an arm broken off and laying there, an eyeball hanging out, and a compound fracture of the leg with some silly ketchup -then says I’M FINE or THAT’S OK and it’s funny because it is such a hilariously ridiculous statement given the circumstances. Of course it’s not ok if your arm and leg are ripped off and eyeball is dangling out of socket. I doubt I’d even laugh at that anymore because it’s my real life now! Also, I do wish I hadn’t bullied my body around. I wish I could have gotten some medical support and been given a reason why I needed to slow down!!!! I could literally notice that I was becoming unable to do things that I could do 30 or 60 or 90 days earlier. I had a flu that I never recovered properly from or should I say never regained my former level of function (never made it back up that last step down). I was significanly impaired before that flu. I can’t tell you how many times I’ve wondered if I were going to wake up. At first it worried me but it doesn’t anymore – I detest the suffering! And, no, I’m not whining to die or anything – just saying that I can’t do it alone and if I can’t get medical help there is no point of worrying too much about it. What good would it do? I really feel like my hands are tied here.
Sorry that what has begun as a thyroid issue has become a gripe session. My plate is so incredibly full – it’s awful! I still remember my life about 10 years ago and it was COMPLETELY different in every way imaginable! I had an amazing life that I loved! For awhile I wondered whose life am I living here – and that was when I was feeling much better than I am now. It’s just really incredible! I wondered what I did wrong to deserve this but realized within a few months (8 or 9 years ago) that I could have never done anything THIS WRONG! My health was exponentially better then too!!! I just don’t bounce back from the plethora of health issues now – not at all. The health issues have caused other horrible unbearable issues also. Gimme a break, you know.
Thanks for listening – if you made it this far 🙂
July 1, 2012 at 7:30 pm #2509Barbara
ParticipantHi,
I will address your long post in sections (if you will permit me) because there are several points to address. Many of us have, or are, going through the same things as you, so we feel for you SO strongly, in fact your experiences are so much like my own, it could have been me writing the post. It’s like going down a helter skelter water shoot, once you’re launched there’s no going back and you can’t stop yourself, you have no control, you think things couldn’t get any worse and then they do, you just have to endure the atrocities and pray you survive to the end.I too have felt as if my ‘time’ is nearly up on several occasions, in fact 8 years ago, I celebrated my 50th birthday in February because I didn’t think I’d still be here in the June!! Other than that I have left notes for my children on more than one occasion because I didn’t think I’d make it through the night.
Then there’s the other side of the coin when, like you, you contemplate whether or not it would be a blessing if you didn’t wake up – because the pain was SOOo bad!
The trouble with our energy supply is that we have ‘no reserve’ so you have to prioritise and cut back very strictly on anything that’s not ‘absolutely necessary’ – you have no option but to become ‘self-centred’ in the literal sense of the term. If not, because we have no energy reserve, we have to create energy in a different chemical way, which produces lactic acid as a by-product and this is what gathers in our muscles and causes pain, just like a Marathon runner does when he ‘hits the wall’.
In my experience, you will speed up your decline and certainly increase your pain, if you do not moderate your activities.
Regards
Barbara
(UK)
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella (Oct 2002) Fully Blown Empty Sella (Oct 2004); Whiplash Associated Disorder (WAD); Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Vitamin D deficiency; Ehlers Danlos (EDS) type 111; and now Osteoarthritis! and oh, I forgot Arrhythmias – confirmed as runs of Bigeminy and Trigeminy.July 1, 2012 at 8:03 pm #2510Barbara
ParticipantHi again,
With regard to where do you start, what do you do to get treatment, etc., firstly can I ask, have you had an Brain MRI ? If you have, was there any mention of an empty sella (or partially empty sella) because the ‘sella’ is a bony chamber where the pituitary gland sits and an empty sella suggests a flattened pituitary and a flattened pituitary gland can cause strange thyroid abnormalities. Secondly, if you have had an MRI, do you have a copy ? If not, I suggest you get a copy and compare it with the illustrations in Dr Diana Driscolls Theory.If you haven’t had an MRI yet, I suggest that’s where you start. I think you have adequate reason for requesting one, as you have migraines, headaches and possible pituitary malfunction, you also have many of the neurological symptoms of EDS, so that’s a further reason to get one.
When you get hold of it, check for ‘External Communicating Hydrocephalus’ because if you have that, it’s imperative that you reduce the level of CSF that is causing pressure on your brain, which should lead to a reduction in symptoms, as per Dr Diana Driscolls Theory.
Regards
Barbara
(UK)
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella (Oct 2002) Fully Blown Empty Sella (Oct 2004); Whiplash Associated Disorder (WAD); Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Vitamin D deficiency; Ehlers Danlos (EDS) type 111; and now Osteoarthritis! and oh, I forgot Arrhythmias – confirmed as runs of Bigeminy and Trigeminy.July 2, 2012 at 12:47 pm #2512Barbara
ParticipantHi again ‘Give My Daughter the Shot!’ and All,
you say . . . ” What human being has a brain that is equipped to deal with all of this crap WHILE THEY ARE LITERALLY LIVING IT!!”
Well, that’s us my friend and there’s many of us. Dr Paul Cheney, a Chronic Fatigue Consultant says he’s surprised we’re still living!!
The human body is an amazing piece of engineering and, given the right conditions, it will persistently aim to correct any failings, darn, it’s trying it’s best but we’re still not right, it obviously needs more of a helping hand. Here’s my alphabet of coping mechanisms:
COPING A – Z
Alternate sedentary tasks with manual tasks, to give the body chance for recovery in between;
Best to recruit ‘energy saving’ coping mechanisms (i.e. delegate!, or work ‘smarter’);
Cut down on stress (emotional, physical, financial – I know, it ain’t easy!) – avoid conflict;
Drink extra fluids between mouthfuls of food to try and alleviate constipation;
Eat small meals and often, to lessen the burden on the stomach, NEVER over-eat;
Forget working with the body bent forwards, or with your head down (in flexion);
Get someone else to do it, if it means working with your hands above your heart;
Help your head to stay as balanced on the body as possible (sit up straight – no slouching!);
Improve collagen (with Vit C), bone renewal (Vit D), energy (Vit B), stomach acid problems & low blood volume (both need salt, preferably iodised);
Just check you’re not short of minerals too (e.g. Magnesium, Zinc, Selenium, Manganese, etc);
Keep your body warm when it’s cold (layers), or cool when it’s hot (fans, flannels, sprays);
Look at ways of doing your tasks sitting down, wherever possible;
Massage is a great way to disperse the lactic acid build up in the muscles;
Never go to the kitchen bin with something important in the other hand !!!;
Only eat foods you know to be fresh, don’t risk a dose of ‘the runs’!;
Prioritise tasks and write ‘To Do’ lists, to avoid overcrowding your own memory;
Quell pain – Yes you do need to take whatever works, to keep pain as low as possible;
Recognise & deal early with physical stressors that make you sweat, i.e. full bladder/bowel;
Sit opposite the person you are speaking to always, never keep your head/neck at an angle;
Take extra care of skin, don’t allow any sores to become weeping or infected;
Unstable Cranio-cervical joints need support – wear a Philadelphia (or similar) collar;
Vibrating massage mat is best used at the first sign of leg discomfort (wiggling legs helps);
Wear full length ‘Support hose’ to aid leg circulation and to try and alleviate any oedema;
X = 10, 10 O’clock – bedtime, DON’T push yourself to stay up, it’s no good for the adrenals;
Your computer screen & your work need to be elevated, so you are looking straight forwards;
Zzzzzz – Sleeping sitting up, may lessen your symptoms;Regards
Barbara
(UK)
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella (Oct 2002) Fully Blown Empty Sella (Oct 2004); Whiplash Associated Disorder (WAD); Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Vitamin D deficiency; Ehlers Danlos (EDS) type 111; and now Osteoarthritis! and oh, I forgot Arrhythmias – confirmed as runs of Bigeminy and Trigeminy.July 2, 2012 at 10:02 pm #2520Give My Daughter the Shot!
ParticipantThanks, Barbara. This would’ve been posted before your ‘checklist post’ which I happen to like very much but I got tired and saved it without posting. Anyway:
It has been said and confirmed. I hear so many possibilities and ‘grasp’ frantically at many – with no ‘reserves’ to ‘run’ on. Maybe you know how that works out.
Anyway, Dr. Diana said MRI also and, regardless of read report, it should be looked at by someone knowledgeable regarding EDS, CCVSI, etc. I’ve printed and shown the info to my physical therapist and explained that if I have to do anymore horrible tests, I’d like them to ‘count’.
I may just have to ‘suck it up’ and see what my PCP says. Truth be known, while not everything I have to say is positive, she has been very accomodating with regards to referrals and she has ordered a lot of diagnostics. She has been the best doctor that I have ever had (in my current medical provider situation) for referring. She has been very willing to order diagnostics – just that they are traumatic for me and reveal little to no info and have seldom been reviewed with me. Like I’m being tortured w/needles and dye for nothing because they are diagnostics that are often without a knowledgeable basis or purpose. Example: horrific pressure in my jaw and head – horrendous – I’ve had 2 diff doctors order CT of head with and without contrast. There’s nothing there (or so I’m told). Worst of all, the CT scanner/equipment is archaic and not worth injecting dye into my body for IMO. It is so old that I understand the image quality is something like ‘6 slice’ versus ’60 slice’ <--yes, I'm a lay person but it was like at 10% for available quality of images. I think Diana said that a CT wouldn't provide the information that she might look at. My veins blow too. I haven't participated in the last head CT with contrast that was ordered for me. The pressure is down by now anyway - yes, I still have pressure but not consistent and alarming right now as it had been. If I have to allow injections of dye into myself (makes it hurt badly for me to pee for awhile so I suspect it's not good for me) then I want it to have some value to my health. I should do the MRI and do it right. The kicker of having the MRI done, more @^%%&$^$*(&@ dye, I think it's a contrast MRI or at least would need to be with contrast to be comprehensive. I am terrified by a phobia of this type of stuff. I mean terrified to the point of passing out, vomiting, turning purple, sweating through clothes, crying and regressing back to being practically a 3 yo who is terrified. Stupid, I know. Embarrassing, for sure. I oughta suck it up since those reactions now sound like 'a day in the life' anyway. I would say 'LOL' but not really funny. I feel like I'm leading myself to the slaughter, as phobic as I am. I do thank you for saying this - I thank you very much. I fully trusted Dr. Diana's previous recommendation and took it to the doctor when she said it. PT didn't 'jump' on it (physical therapist so isn't really her realm) and I didn't push it either. Your saying it again has told me that I'll have to push to have this done. I'll use some of your reasons as well as Dr. Diana's as I prepare a confident and educated presentation for my PCP (maybe PT can relay). I'd love to be paid for my efforts, seriously! It's an exorbitant amount of non-existent 'reserves' that it takes for me to orchestrate all of this. If I had the ability to juggle/handle/deal with/orchestrate/prepare/educate myself, I would certainly put it to proper use via a well paying job!!!! I just miss my job, insurance and my own doctor who knows my character and would help me. Worst part is that, even after all of this, I won't be 'fixed'! Like working hard for a nice vacation or a nice home - now I'm working like a marathon runner and not earning, climbing a ladder or bettering myself (yes, I know health maintenance is paramount). Just that now my best possible benefit is to use my bloody stumps to grasp and cling to a steep cliff before I actually crash onto the bottom. Degenerative, that means that I'll be hanging near the bottom with painful stumps. I just thought of that description. I think my frustration comes from quality of life issues. I really was very proud of my life and felt good about myself as a human being. I also made good choices in life, almost all the time. I respected and cared for others. Strong work ethic, I always honored my obligations and I took care of myself and my family. It's hard to 'operate' like this, be exhausted as a marathon runner, suffer everyday - AND LIVE IN POVERTY! Logically, if one is working THIS HARD and feeling THIS WORN OUT - they should be EARNING and there should be some positive results, SOME REWARD!!! Even if the reward is just self-esteem and being proud for accomplishments. Though in my experience there is also financial reward and being able to effortlessly maintain the basic requirements of life. I am accustomed to trials and tribulations of 'head of household' but have no experience being poor and sick. It's dreadful! A job was a huge part of my identity and self-esteem. I have an entrepreneur type of personality and this loss of function/ability to enact my own will/independence is devastating to my core. I'm don't want it and/or I don't want to accept it. I can't escape it either. I try like crazy to figure out how to maintain it. Trapped. Hence the genetic doctor's recommendation of counseling. Yep, this 'vicious cycle' uses energy that I don't have. Guess I'm going down 'kicking and screaming' (<--hypothetically, of course) and only on the days that I can stomach (<---now that has the capacity of being more literal). It's crazy! Oh, let's not forget to factor in the random physical ailments into this cycle. I seldom have the function/capacity to complete small tasks. This health mess is much more than a simple task.
July 2, 2012 at 10:04 pm #2521Give My Daughter the Shot!
ParticipantI promise that, God willing, I will ‘bounce back’ from this. I am sure that I will be able to advocate somehow or help someone else with the knowledge that I end up acquiring. I’m not just trying to whine and complain. I’ve never been a whiner. Thanks to Dr. Diana, I know there is a light. Once some of the research is published, it should make protocol a bit easier and doctors can make better sense of such complex and all pervasive medical issues (in turn I’d feel more secure and at least a little better)..
Remember the saying, “Oh, I need a vacation”. Well, I’ve noticed that many people (not EDS) who have related to me with their dreadful ailments seem to have no problem ‘taking a little break’ if some sort of neat plans arise. I missed Easter festivities this year because I was crapping myself, among other things. Point: it’s so consuming that there IS NEVER a break! Life is like a box of chocolates….. I can manage to sit for about an hour even with pain but crapping or vomiting, not so much. Migraines, can’t walk, gasping for air, not so much. I’m at the mercy of my health – every single day! Again, I digress – ugh!
So sorry. Can you tell that I am both under stress and also not feeling good?! There’s just so little left to ‘wring’ out of myself.
Gentle hugs <--- guess you know you belong if you get this one. Nothing like someone from church giving you a hug and you feel like you are going to scream bloody murder from the pain but are in such shock from the pain that you can't even draw in the air to do so. Again, I would say 'LOL' but not really very funny. Thanks Barbara!
July 3, 2012 at 9:06 pm #2536Barbara
ParticipantHi
You say ” . . . . Worst part is that, even after all of this, I won’t be ‘fixed’!” etcWell my answer is – Maybe not straight away but you’ll be taking your first steps down the path of recovery. You will be working ‘to get your life back’ – truly a goal of great worth.
Regards
Barbara
(UK)August 22, 2012 at 8:05 am #2791Omega
ParticipantHi
Sorry for adding my post in such a delayed fashion. I came across with this page whilst googling on aberrant endocrine system and EDS. (I’m already a member over this site)
So little is said/researched about endocrine system and EDS which is simply quite shocking.
I am convinced a fair proportion of EDS-ers may be living with some “autoimmune” condition. Endocrine issues must be quite a big factor in how poorly we are functioning, in my personal experience.
August 23, 2012 at 6:35 pm #2795Barbara
ParticipantHi Omega,
I absolutely agree with you over Endocrine issues being involved, without a doubt you are so right!For those of you who are just starting down the ‘research’ path I’ll try and explain how our condition affects the Endocrine System. Dr Diana has a theory that many of us are suffering from External Communicating Hydrocephalus, this is basically (excess of) fluid on the brain, CSF fluid to be precise. Due to there being this excess of fluid, in a confined space (the skull) it exerts pressure on adjacent tissue, this being mainly the brain itself but it also invades a bony chamber (the Sella) at the base of the skull, in which the Pituitary Gland lives. As the Pituitary Gland becomes mildly squashed it is referred to on an MRI, as a ‘Partially Empty Sella’
A healthy Pituitary Gland looks like a cherry. However, this persistent pressure from the excess CSF fluid, that many of us have, squashes the Pituitary Gland so much that it eventually lays flat at the bottom of the Sella. This is referred to as an ‘Empty Sella’ on an MRI scan. It’s not actually empty, you still have a Pituitary Gland but it is functioning (or, more precisely, malfunctioning) under pressure.
Be aware, that the Pituitary Gland is the ‘major control’ for the endocrine system, it directs other organs and endocrine glands. So this malfunctioning can affect a multitude of things from either one, some, or all branches of the endocrine system. (i.e. sex hormones, growth hormone, water balance, thyroid stimulating hormone, etc). Many of us seem to display symptoms of Hypothyroidism for instance (dry skin, loss of hair, low basal temperature,tiredness, weight gain etc).
The good news (according to Dr Bolognese’s videos at TCI) is that, if the intracranial pressure (from the excess CSF) is brought to a normal level, the Pituitary Gland can recover and start to function properly again, yey! So, all we need to get is a knowledgeable radiologist to look carefully at our MRI’s, recognise the problem (of an Empty Sella, or Partially Empty Sella) and for a Neurologist to find a solution to reduce the intracranial pressure (Dr Diana found Diamox successful) and we should be on the road to recovery.
Regards
Barbara
(UK)November 6, 2012 at 5:38 pm #3110Sunshine
ParticipantThis thread is over 90 days old and will be closed. Please feel free to reopen the discussion by clicking on “New Topic” in the upper right hand corner of this page. Thanks!
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