And It's About Time There Was Some Support For Cushing's!
I began experiencing symptoms at 13 but I didn't know that 5 years later I would go from my regular 54 kilos to 85 kilos in 5 months. My journey has been difficult but I do have the support of my wonderful boyfriend whom I live with and who cares for me. He knew me as a size 8 and has stayed by me at size 18 (Aus). I don't have an 'official' diagnosis yet as they believe my condition is cyclical, but, my age, gender, onset of symptoms, and test results all indicate a pituitary source. My MRI was negative (but it is 25-30% of the time with pituitary adenoma's) and I am supposed to keep repeating 24hr urine tests and bloods until, as I am told, "a pattern forms." I hate being told I'm depressed so that is the cause when it clearly states that Cushing's CAUSES depression but having read other people's stories it seems being called a liar and not being believed is pretty standard. It is hard and scary, and being in Australia means there aren't as many cases. I just wish Cushing's wasn't so misunderstood (or rather misunderstood amoung the medical community - the first endo I saw was a professor and said I had to be eating junk food cause I lived in the city!) and we weren't treated so badly. I hope anyone out there has support and if there is anyone in Sydney who would like to talk to someone going through the same thing please feel free to contact me. I wish you all well and thanks for having me. Kim.
I am 20 and I have Cushing's. My age, gender, onset of symptoms, and test results all indicate a pituitary source. Unfortunately, my illness appears to be cyclical so I have to keep repeating tests until, as I am told, "a pattern forms." I live in Sydney, Australia and if anyone wants to talk to someone who is going through something similar please feel free to e-mail me. Below is a letter I wrote that contains more in depth information about me and my battle with Cortisol.
This is a letter I wrote when I came out of hospital for the fourth time without a full diagnosis and after a horrible tv program regarding obesity - how do they know whether or not the people they capture with their camera are obese because of over-eating or illness!:
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I graduated in 2005, with a UAI in the high 80's and acceptance into my first preference course at university. Two and a half years later and I am fighting for my life and sanity due to this rare illness. It is very difficult to diagnose and throws your fight or flight senses and related hormones into overdrive. As a teenager I was always 'running on too much adrenaline' - little did I know that this expression was actually true in my case. Cushing's primarily affects a persons' stress hormones, that is, cortisol and adrenaline. While helpful in an emergency situation, having too much of these hormones coursing through your body causes a lot of problems. Elevated Cortisol is reffered to as hypercortisolism and Cushing's Syndrome refers to the illness that causes high cortisol. It can be the result of a small pituitary tumour called a microadenoma (they are less than 10 millimetre's in size and this is referred to as Cushing's Disease), an adrenal gland tumour, or an ectopic tumour (often in the lungs or pancreas and is cancerous more than half of the time). People with Cushing's essentially lose their body as weight is gained, rashes form, and hair is lost. It is a horrible experience, made worse by the assumption that we are simply obese people who brought this on ourselves, who should excercise more and eat less. This illness is highly misunderstood even by the professionals who deal with hormones and weight issues. I've had symptoms since the age of 12 and was dismissed by my GP (who had diagnosed me with hyperchondria when the test results of a 'scare tactic' blood test showed that I had been fighting Glandular Fever without any medical intervention), I obviously never saw him again and would contract Viral Menegitis less than 5 years later - it seemed my immune system was always weak, I was always sick and so people believed I was crying wolf - despite all the medical evidence ignorant people will believe what they will. Another 5 years on and I would be told by an MD and Professor of Endochronology that I was overeating because of where I lived and was just not admitting it - despite visable features and being nearly incapacitated with an illness that would be revealed to be Cushing's Syndrome a year later.
I weighed between 53 and 55 kgs, standing at 154cms from the age of 12 to 18. When I began university a few weeks after my 18th birthday I was so happy with the way I looked. I never wore make-up as I think it is essentially a mask and I prefer to look the way I look, no designer clothes just some jeans and a blouse from Target and I felt really comfortable in my own skin. Unfortunatley my body would soon be destroyed at the hands of the hormone cortisol. Three months before my 19th birthday I put on 15-18 kilograms in 11 weeks - no kidding! This was initially noticed on the 17th of September 2006, when the cortisol (the hormone responsible for this illness) left me without sleep for 3 days - this was the first day my size 10 pants wouldn't fit, I thought they had shrunk during washing or that perhaps my hips were swollen from a recent fall. As I was so exhausted and anxious I had to be sedated in order to get some rest. I had, had ranging symptoms since I hit puperty (quite early at the age of 9). My body filled out and people swore I had lost weight during the holiday's between year's 7 and 8 (I would have turned 13 in Jan when I began year 8). It was at this time that my unusual symptoms began. Genetically I should be 5'4" but I am 4'11", this was the mystery that began my medical journey at age 13. Little did I know that at this age I was experiencing symptoms of adolescent Cushing's Syndrome. It is reported that adolescent sufferer's rarely reach predicted height, they begin puberty early with unusual and spaced menses, and have a range of resulting hormonal problems. At age 13 I developed what we thought was rosacea, which is a facial rash that resembles acne but is bright red, caused by an infection in the blood, and aggrevated by heat and allergies. This usually onsests just prior too, or during the beginning's of menopause - I was 13! I did not respond to any of the rosacea treatment - beacuse I suspect it was not rosacea but facial plethora - basically meaning: broken blood vessels under the layers of skin. This is a common symptom - if not an actual trademark symptom - of Cushing's Syndrome. I also developed severe insomnia in October 2001 and have required earplugs and antihistamines ever since in order to get any sleep. But there was more! Between ages 11 and 12 I developed these bright purple/red lines that rapidly appeared on my breasts, hips and behind my legs at the knee. It took years for them to fade, and at the very edges of my breasts and hips small purple marks can still be seen at age 20. Deep glossy white grooves remain where my 'striae' once were. The Pediatrician blamed rapid growth, although I am still the height I was in year six. At 16 it was discovered that one of my hormones that comes form the pituitary gland in the brain was highly elevated. This resolved when I was placed on oral contraceptives but less than 3 year's later I would encounter another pituitary problem. This one - potentially fatal. By the first week in November 2006 I weighed 74kgs. Despite my best efforts, exactly three months later I weighed 84kgs and had bright purple/red lines covering my body (these are much wider and deeper than traditional strech marks and can often appear a while after the weight gain) on my abdomen, lower abdomen, arms, legs and behind my knees. From my exercise I had rotated my pelvis 10 degrees with a 12mm tilt (if I have children I will not be able to give birth without a c-section until a chiropractor reverses the rotation) and my spine was beginning to curve at the neck - I was developing a little hump, due to the curvature and fat pads being rapidly placed along my shoulders and upwards giving me a round pudgy face and neck (this is reffered to as the 'buffalo hump' and 'moon face,' i.e. red and puffy, and is considered a crucial diagnostic symptom). As of May 2008 I weigh over 95kgs and atleast 10kgs of this is a fluid oedema (this appeared in the last month - April 2008) that is putting pressure on my lungs, heart and kidneys. To make matters even more mind boggling - despite being overweight I barely eat or keep my food down as I have very bad reflux and a chronically inflammed stomach - so on top of it all I am double my weight and suffering from malnutrition!!!
People suffering from Cushing's are often told that they are doing it to themselves, binge eating and then lying. It is almost like a right of passage to not be believed. One physicians letter, received this January, stated that my urine free cortisol levels were "three times normal" but that this "could be explained" and that I "was certainly looking for an organic reason for my 'problems.'" I have never seen a medical report with sarcastic inverted commmas, but this was a letter from one GP to another (who by the way was outranged at the other doctor's nerve - he wanted to diagnose me with a psychiatric illness to rule out Cushing's even though my test results were high and I had all the symptoms) and he wrote that exclusion of 'my psychiatric illness' would resolve these levels. Huh? Unfortunately this is another side-affect of Cushing's that goes hand in hand with supposed lying and hyperchondria, is psychiatric illness - that's why you have put on weight! Note that depression and anxiety (even to the level of complete psycosis are standard symptoms of Cushing's). I have been told by professionals that I have been doing this with my mind as I have a body image issue. This is completley unfounded - I never wear make-up, even when I had 'rosacea', as it was a good way to tell who wants to talk to you and who refuses to be seen with you, I never felt the need to be anything but myself - ever!, and I am enganged to the most wonderful man in the world who has stuck by me through all of this - he knew me as a size 8 and stays by me at size 18. I have been told I scratched the marks into my flesh, tattooed the 'striae' onto my abdomen and one nurse even suggested I used nail polish to paint them on, on the way to the hospital! I have been called a hyperchondriac and even told I was suffering from Munchausen's disease - where a person makes themselves sick on purpose for attention. When my syptoms first began I was repeatedly told that if I lost the weight then my symptoms would go away. I kept reminding them that my syptoms had been present for atleast 5 years before I put on any weight and that they had only worsened with the massive weight gain. I am a 20 year old pensioner (on disability) and I have no private health insurance. I was recently informed by a surgeon who is part of the international pituitary association of surgeons that the 5 to 10 cases of Cushing's that will arise this year in Sydney will be divided between teaching hospitals and I will have to live with tests being repeated over and over again. Unfortunatley, with a pituitary cause and particularly at my age, although the symptoms are glaringly obvious, the test results are sometimes only slightly elevated, even normal in some cases (this is characterisitic of Cushing's Disease - it tends to be 'cyclical'). Therefore one needs a tenacious doctor. I found a reasonable doctor during my fourth attempt (another reason we are called hyperchondriac's as we appear to 'doctor shop'). My physical symptoms, medical history and various test results all support a diagnosis of Cushing's Disease due to a microadenoma.
A women in the state's with Cushing's Disease who has posted a few videos on youtube (look up - Cushing's Disease - from Sharmyn411 - an article regarding her illness appeared in Woman's Day Magazine in the march Issue of 2004) had a microadenoma, struggled for 7 years and fought against 15 doctor's and specialists before the possibility of Cushing's was suggested. Unfortunatley about 25-30% of active microadenoma's that are causing Cushing's Disease in patients CAN NOT be seen using regular MRI imaging. If a pituitary source is strongly suggested given symptoms, age, gender, course and duration of illness/symptoms, and test results - then a procedure called Petrosal Sinus Sampling may be peformed. This is actual sampling of the brain fluid surrounding the pituitary. Up to a quarter of pituitary microadenoma's responsible for Cushing's Disease are not found until surgery is actually being peformed (Sharmyn had petrosal sinus sampling twice, her tumour never showed on any imaging - she had two MRI's - yet the microadenoma was there and was found and removed during trasphenoidal pituitary surgery (it is peformed through the sinus cavity so it is considered minimally invasive). My MRI is clear and my Endochronologist has has mentioned the procedure to me and, as my adrenal gland's have been excluded as the source (through blood results, steriod tests, and imaging), I excpect I will be undergoing this procedure in the near future. However, the process is still incredibly slow and I can not believe this is happening to me and that other people in the same situation as me could be being treated just as badly - and not just by doctors! I barely venture from the house (I can no longer attend university due to this illness) except to attend my various appointments and tests, because ignorant people yell comments regarding my weight and make assumptions about my personality and lifestyle.
The illness, and others that cause weight gain, need to become public knowledge, particularly in regards to doctors. One need only look at the fact that Sharmyn McGraw battled for 7 years against 15 doctors and further specialists before essentially 'diagnosing herself' by researching her symptoms online - something I did aswell. For some reason as soon as I heard that my cortisol level may be high given my striae I decided to check out this hormone that I had never heard of before, and, like with Sharmyn, up popped Cushing's and it detailed pretty much every symptom I had. When I read Sharmyn's article and watched her interviews it was like someone else was telling my story except her story had an ending and mine doesn't - mostly I was relieved in a way that there was someone else so I wasn't alone - I had begun to believe the doctor's, I must be crazy, because it is so hard to fight against these professionals when for some reason, whether it is me or Cushing's, they steadfastly refuse to believe there is anything medically wrong - you're obese and depressed, deal with it! There are support websites in Australia, and like with Sharmyn, reading their stories is very moving and uncanny in their similarity. It for this reason that I hope that my journey will have a happy ending. People are in the dark, they could be gaining weight and receiving a lot of comments and not know that there may be a medical reason behind it all. That's not to say that every obese person has an illness but there is a small percentage that do who are not reveiving medical help due to embaressment and probably shame. I hated myself and spent 3 months going over everything I had eaten in the 3 months previously in case I had been binge eating. I beat myself up over this, but I knew I had been eating normally and had been physically active. It wasn't until I was out doing the shopping in late 2006 that I noticed how bad it was when I saw people looking at me and happened to glance at my reflection in a shop window. I couldn't believe that was me. It had to be someone else looking back!
This illness needs to be brought to attention. It may be rare, but it is devestating and difficult to diagnose and treat. It has messed with my hormones, memory, fine motor skills, vision, temperature regulation, skin, immune system and emotional wellbeing something fierce. Since February of this year I have been suffering from 'memory blackouts' where I lose hours of memory of the day. I appear to fall asleep but I am essentially passing out and can lose up to 10 hours of memory preceeding the blackout. It is very confusing and distressing and I have been suffering from many more neurological symptoms, so much so that the prospect of early stage Multiple Sclerosis has been suggested, but I won't know until the Cushing's is eliminated whether the neurological symptoms were due to the Cushing's or if I have another battle ahead. The worst symptoms are the muscle weakness (and pain - so much so that I am now on oxycodone), and the striae - my body has been destroyed and they itch and hurt pretty much constantly. I am almost always in pain and when some doctor's tell you it is all in your head it is very hard to keep fighting. I am going to fight but I want to make sure nobody suspected to have Cushing's is treated badly ever again.
All Endochronologist's and GP's should be aware of the signs and symptoms of Cushing's and be prepared to run the associated tests - in my experience it has been difficult to get a doctor to even run tests, as they consist of MRI's, CT's, and sometimes hospital stays for confirmitory and exploritiry tests - I assume these tests are quite expensive for the health system and have found myself up against that proverbial brick wall a few times, but this issue should never cost a person's health and wellbeing. Yes, obesity exists and it is a problem but, in regards to the 'Great Weight Debate' it should be noted that Cushing's Syndrome is just one of many hormonal illnesses that can cause sudden weight gain. I believe people should be more informed rather than being just plain rude, and society should back off and provide more help to those with illness and those 'battling the bulge' for other reasons, not provide more critisism and the belief that obesity is only due to overeating and laziness. Not everyone needs Jenny Craig but some of use need a damn good doctors who are willing to believe in us and treat us as patients - and that is much harder to find than a diet plan...
Regards,
Kimberly (Age 20)
Ps. My face still flushes red. My boyfriend thinks it is cute as my face was red for three days straight when he asked me out in March 2006. He has never left my side through all of this and I owe him everything for believing in me and not running like some would (we've lived together since August 2006), and especially with us both being so young (we both finished highschool in 2005). In tribute my e-mail address is: sweetcheeks.20_01@hotmail.com
Well, everything has been pretty much downhill lately.
The hospital contaminated one 24hr Urine Free Cortisol and discarded half of another and so now the doctor's think that the two I did at home that came back 2 to 3 times normal were doped and the one's at the hospital (which I saw being botched) are accurate. A 'specialist' who examined me recently said that it can't be Cushing's cause my striare/strech marks are whitening at my pubic line (even though these are old ones from when I was in puberty, as I have written in my original bio, I had these purple/red lines between the ages 10-15, and he doesn't believe me), now they are all over my abdomen, my legs and in the last two weeks have begun forming on my breasts and down my sides.
I am only 4 foot 11 inches. I don't know if height has alot to do with weight gain but, proportionally, I do not have a large lower abdomen and so it looks like I haven't put on that much weight there. I have always had large thighs so the doctor's believe that I don't follow the Cushing's pattern of weight gain, where, in reality I have put on 45 kilos in 18 months on my abdomen, hips and buttocks, as well as, my sides (it is like my breasts wrap around). My legs are a swollen becuase of a 8-10 kilo fluid adema (or is it oedema?) and yes my face is round and red and I have about five chins. When I lie down on two pillows the fat on my collar bone at the front actually suffocates me! I am hunched over to the point where I cannot actually stand up straight and if I stand I have to rock backwards and forwards as the pain is incredible. I also can't balance because of the weight difference between my left side and right. My periods have always been irregular, light and spaced, but I have never been more than 10-14 days late (i.e. 38-42 days between periods).
PCOS was ruled out when I was 17 as my ovaries are perfectly normal, I do not have any ridiculously excess hair growth, though it is still a little excessive, but my androgens have always been normal and I have never had any lactation. Those are the three diagnostic features of PCOS (my thyroid has also always been normal) and yet they want to diagnose me with PCOS even though I do not have any of the above. This doctor told me that this was irrelevant and that I could still have it becuase of the weight gain, but I have had problems since puberty (1999) and didn't put on any weight until September 2006. I don't get it. He said I wasn't classical Cushing's but if there are only 5 cases in Sydney every year and a hundred know-it all Endo's then how do I know if this guy has even seen a case of it (and it is not a question I can really ask as it will add to the 'she's crazy' argument). And becuase I am young (only 20) I don't think they are taking me seriously. I had a troubled childhood with an abusive father and a mother sick with breast cancer so the accusations are the main diagnostic tools in use - 1. I am faking it to get attention. My mum didn't get attention, she got crap from my dad and I would not put myself through that, I don't know how anyone can actually put on 20-25 kilos in three months by binge eating on a student wage with a chronically inflamed stomach - 2.
It is a test to see if my partner will stay with me. By making myself unattractive and basically imobile, I don't think so. We are still planning our wedding, but we are going to wait until I feel up to it, we already consider ourselves to be married. 3 - I have a morbid facination with hospitals and illness. Just becuase I have spent a lot of time in them (visiting) and further involved as the official carer for my mother doesn't mean I enjoy hospitals, the few times I have been admitted I couldn't wait to get out as I couldn't stand their mistakes jepordising my health or chance at getting a diagnosis and so I voice my opinions. My regular specialist said that my medical knowledge is off-putting. It is not like I research this stuff, you just pick it up when you have a sick parent and her husband refuses to take any responsibility.
I feel like I am getting punished. I was abused as a child. Maybe all the stress over so many years built up and now I am sick - I don't know. I don't think just becuase I was in a really sad place and cut myself when I was 15 I should be treated like an attention seeker (anyone who has ever self harmed know's that it has nothing to do with attention, its more about controlling pain when you are being continually hurt). It is the first thing doctor's look at as they have become more visable since I became sick. A Psychiatrist tried to pin it all on a Somatization Disorder - basically I am doing it to myself but I don't mean to. The diagnostic guidlines are so flimsy - 1. Sick as a kid (who isn't - especially as I was premature and had a crappy doctor who missed glandular fever and later found it a few years later in a special blood test after I finally got my parents to believe that I was not faking - and I wasn't, yet that stigma seems to be following me). - 2. Stomach or bowel problems (I just found out in feb that I am lactose intolerant and have a chronically inflamed stomach with very bad reflux, both are genetic, the first from my mum and the second from my dad). - 3. Pain. Of course I am in bloody pain, my body has been through unnatural and rapid changes. - 4. Lack of sexual interest. I feel like a whale and I am sore all over so I am not exactly in the mood, plus I have some issues with it due to my past but I have been working through these. 5 - A neurological symptom. I get shakes and twitches but doctor's incidentally found some mild brain damage (Mesial Temporal Sclerosis on the left side) that can cause partial seizures and I am seeing a neuro (who doesn't think I am crazy). I can explain it all but that just works against me - for instance I may have just diagnosed myself....lol
I never used to go to the doctor (my mum would drag me often when I was a kid as I was the only child she could have and there were problems from my conception) and now I have to. A single doctor can't seem to figure out why I have had cushing like symptoms since I hit pubert at age 10 but didn't put on any weight until age 18. It is a mystery I would like solved. I wish I didn't have to see so many doctor's but when one hits a snag they send you to someone they know and the chain continues. Anyway I feel like I can't win, the doctor's ask a million questions and then twist the answers to suit their pre-determined and biased diagnosis. And as for depression, who wouldn't be! I think the worst thing is when the doctor's get frustrated with me when I am begging for answers and tell me that they have to go and pick up their kids and get home. I don't have much of a life and I don't think it is fair that they get to go home to their's and leave me without answers and just scripts for more pain killers and more blood and urine tests. I feel like it is a big joke. I've been through enough and this isn't fair - it isn't fair to anyone who thinks they may be suffering from Cushing's. It is an uphill battle with the doctor's, I haven't read of anyone having it easy. I hope that doctor's wake up and help us. And even if I don't have Cushing's then what do I have. I don't want to have surgery, the doctor's think I am desperate to have Cushing's which is crap, I just want a diagnosis so I can work towards a cure, not pain killers that mask the problem (and they don't even do that half the time). But, I have enrolled in an online course and am seeking some part-time work (she is willing to work around my issues) so I am trying really hard not to let this ruin my life. I am so devestated by all this and I just want it to be over.
Sorry I had to vent, I have actually been avoiding this site for weeks because I have been so angry and hurt but this is probably the place to be - if anyone understands what I am going through it is the people here. Take care and bless you all.
Kim.
I think the link for my original bio is included, please read it as it explains my history and I also included a link to some before and after photos with my bio and introduction.
Thanks.
Hi everyone,
Recently I've been diagnosed with pretty bad PCOS (blood test results were high and conclusive - don't know why it took 2 years for someone to test those hormones) aswell as Syndrome X (metabolic syndrome), mild arthritis, early stage heart disease, and mild Mesial Temporal Sclerosis (brain damage).
My striae are still spreading and starting to split and ulcerate but my cortisol is normal (low actually) after 3 recent UFC's (not including the other contaminated ones).
Cushing's is still on the table (my blood Cortisol varies from normal to three times normal and I have had one UFC that was three times normal and two that were just over the max limit), but apparently is still very unlikely as the other conditions explain most of my symptoms. My regular Endo said that there was nothing I could have done to avoid gaining weight and that it was not my fault (which made me feel alot better, but I still have 50 kilos to lose). He also said that given my conditions, which compound on one another, it will be very difficult to shift any weight. It is pretty extreme for a 20 year old but Gastric Banding surgery has been recommended to lower my cholesterol, tryglicerides, insulin, and glucose - so I hope that goes well (I don't over-eat, the band sends signals to the brain that lowers these blood levels and then if I lose some initial weight I will be able to shed the rest the old fashioned way).
I am just too sick, and believe me it is not for a lack of trying, I detached my sacrum (lower spine) and twisted my pelvis trying to excercise my ass off and still gained another 20 kilos over the space of 18 months. I'm also going to see a dermatologist about the strech marks/striae, hopefully they can fix it before it gets any worse.
It is ironic actuallly, as now that I have nearly every symptom - after seeing the ulcerated strech mark the doctor agreed I had thin skin - they are everywhere! (only missing high blood pressure and a buffalo hump), I am no longer a Cushie. Gonna miss you guys, you all helped so much.
Take care and best of luck to you all,
Kimmy.
Hi. I need some wisdom regarding PCOS v Pituitary Cushing’s Disease.
Please read my bio for all the info and view my slideshow which is me before and after. I have gotten so much worse since I posted the slide show and have all but two symptoms of Cushing’s, yet, I have been diagnosed with PCOS. My slide show - http://www.slide.com/r/WXVmxAfY7T9wxtOpEdHxqoZKqxMrY5KJ?previous_view=mscd_embedded_url&view=original
A little overview, the recent developments and my investigations into the likeliness of PCOS:
I am 154cm tall and was between 115 and 120 pounds initially (Aug 2006 and had been since 2001), then I gained 45 pounds in 8 weeks, then a further 25 pounds in 3 months (with me exercising like crazy). The weight was stable for 14 months and then I put on another 22 pounds in 4 weeks (April 2008). I have recently had three low UFC's. Before then I had one normal UFC, two UFC's just over the max limit, one 2x normal UFC, one 3x normal UFC, and two contaminated UFC's - so I've had a total of 10 UFC's in 18 months. I didn't suppress the first low dose dex, but I did suppress the second one performed a year later (suggesting no Cushing’s), and suppressed the three high dose dex tests I have had (suggesting a small pituitary tumour, MRI was clear but this happens 20-25% of the time with small but active pituitary tumours). My blood Cortisol ranged from within normal limits to 2.5x normal and I have all the symptoms except for a buffalo hump and high blood pressure (but I have an unknown heart problem with low blood pressure and a rapid pulse). My stretch marks are all over my body (and starting to split and ulcerate) - everywhere but my face, neck, hands and feet and I have acne on my face really bad as well as on my back. I've had a red face like sunburn since 2002 - but they've ruled out Cushing's based on my test results. My ovaries and androgens are normal, but I was diagnosed on the 25th of July with PCOS because of my LH to FSH ratio. It doesn’t make sense. I will ask to have another UFC in a few months if my stretch marks keep spreading, I gain any more weight, or I develop the 'missing' symptoms.
So I have been diagnosed with PCOS and it had to do with my LH and FSH ratio (my ratio is 2.7ish, but my androgens are normal and always have been, they are even lower than they were in Feb 2005, and my SHBG is normal/high when it should be low). I have also had these hormones LH and FSH tested at least half a dozen times, the first in Feb 2005, I saw an Endo that May and although he was a touchy jerk he wrote "Endochronoligically the features do not support a diagnosis of PCOS" and when I inquired he said that my blood results did not support this diagnosis (though he agreed I had increased hair growth, my Prolactin was abnormally high, and there were visible cysts and an excess of follicles on my ultrasound). In June last year I had no more cysts - my ovaries were perfectly normal and so is my Prolactin (though it is usually on the high side of normal). My regular Endo told me the FSH should be higher than the LH and that is why he diagnosed PCOS. Since that first test in Feb 2005 and every test since, my LH has always been higher but not by as much as in my June blood work. If I had PCOS and have had all this time that I have had Cushing's symptoms wouldn't the levels, or rather the ratio, have always been higher? I wasn't on the pill for the two tests below, or the two tests I had in 2005.
My recent tests were like this:
May 15th 2008:
FSH - 4.2
LH - 6.6
June 27th 2008:
FSH - 14.4
LH - 5.4
Why, if this is the diagnosis, was it not 'found' sooner?
My doctor will not proceed to the 3-day dex test or the inferior petrosal sinus sampling (IPSS) to rule out Cushing's because I'm only 20 and he doesn't think it’s very likely that I have it. But, he has suggested Lap Banding surgery to lower my insulin, glucose, cholesterol and triglycerides so I can lose weight (I'm Insulin resistant and a high metaboliser of medications). He said there was nothing that I could have done to prevent the weight gain and it will be next to impossible to lose weight now. All I am on is Metformin (1500mgs a day) and the surgeon may refuse to do the Lap Banding surgery anyway, according to my Endo, despite my current health.
As for a second opinion (or rather a sixth opinion):
As far as Endo's go there is not much to chose from, but after going over my blood work I am going to ask my regular Endo and GP about the validity of this diagnosis given my symptoms of Cushing's and lack of symptoms/blood test results supporting PCOS. I am trying to line up an opinion with a doctor north of Sydney, and hopefully someone will look at the whole picture. That's the main problem. They are always telling me I have too many symptoms for too long (9 years) that they can't work on them all. The silly thing is, is that the symptoms are all related and are like puzzle pieces so the docs are only looking at the parts of the puzzle they want to 'deal' with so I am not getting complete quality care. The low UFC's concern me but only a few months ago was my regular Endo was suggesting Cyclical Pituitary Cushing’s and now because of 1 blood test result (no scan or anything else) and even though the other hormones should be high or low and mine are the opposite to the standards for PCOS - that is my diagnosis! It feels like a way out not an actual fact, he told me that I don't have to have cysts or high androgens to be diagnosed - that it is based on the FSH and LH ratio and my 'history'. Well that is crap, my ratio was only high in 1 blood test (June 08) and hasn't been the 5+ other times (although the LH was always higher it wasn’t by much) since I began putting on weight and developing Cushing's symptoms (Sept/Oct 2006 for weight gain and stretch marks, and have had the other symptoms like flushing etc. since 2002), and my periods, i.e. ‘the history’ are between 30 and 45 days apart - they are not absent and never have been! I just hope that the Lap/Gastric Banding surgery actually happens and that one doc wakes up and decides to look at the whole puzzle. I am so sick of being told off by them, my regular Endo calls it the "Kimberly Show" because I am aware of what should happen and my own health and when I see a doctor re: Cushing's I talk about my history, i.e. blood tests, physical symptoms, family history etc. I find it very offensive when he says that, why shouldn’t I know what is happening to MY body! And people on this website have said that there shouldn't be a 'symptoms quota,' and I agree. Why can't they just do there job, it is what they trained for and it is what they are paid to do. By ignoring half of my symptoms/history/results they are not going to solve this!
So I may very well be one of the mis-diagnosed. Please e-mail me if anyone has been through something similar or can help in anyway. Just knowing I am not alone, and particularly completely sane for not accepting this diagnosis helps immensely. I would really like to talk to someone who has been through mis-diagnosis of PCOS and find out how they got to the right diagnosis. Thank you all so much.
Regards,
Kim.
