Oops, sorry, can't edit the topic. Should be
Could Acromegaly Be Main Killer Disease Behind Most
I have all of the following but with normal IGF-1 reading and normal glucose readings. I fear I will die because I have all of the following (and lots of proof in pictures, x-rays, lab tests, etc. Yet doctors won’t believe I have acromegaly because of the normal IGF-1 and normal glucose readings.
Is it possible to have all of this and still have acromegaly when you have normal IGF-1 and glucose readings? (I have only been allowed to get one IGF-1 and one OGTT test in my life.
Current Symptoms:
Gallstone (Have proof on lab report. Believe I have gotten rid of this with natural medicine)
Growing Tumour (1.2cm macroadenoma – quadrupled in size in 12 years (Have proof from MRI picture and reports)
Swollen tongue many mornings (feels like mumps, sometimes extends to ear, toothmarks on side. (No proof. Almost got laughed out of doctors’ offices, including one specialist who could find nothing).
Anxiety (of course – when no one will believe this in spite of so much proof on pictures, MRI’s, x-rays and symptoms! Have proof.)
Fatty Liver (Have proof on lab test report. Rarely ever drank alcohol and avoid sugars and junk foods a much as possible. Cook from scratch. Was never into street drugs).
Kidney cysts (Have proof on lab test report. Always sore right kidney accompanying three sore spots on spine, lower the most, as well as rectal pain)
Huge & deformed feet with bunions & Morton’s neuroma and some other type of tumour (feet have grown tremendously since age 45)
(Above tumour may be ganglion because I’m prone to those. Have one under wrist as well). (Have proof on doctor’s report and pictures)
Arthritic ankles (have proof on x-ray reports and pictures)
Uterine fibroids removed twice. (Have proof on lab test reports. They want to do a laparoscopy but I’m afraid of that).
Thickened Endometrium (Have proof on lab test report).
Growing hands (Have proof on huge comparison pictures) Size 6 ring is now size 9. Hands aren’t fat – just big.)
Growing nose (Have proof on comparison pictures)
Growing nose bridge (So big I now have to wear men’s glasses because the nose piece on women’s has to be bent back so far that they can be seen through the eye pieces).
Deep Furrows in Forehead (Have proof on pictures)
Loose Skin on face (Looked very young first 45 years or so). Now aging very rapidly. Have proof in pictures).
Extra growth on front of Forehead (Have proof in pictures. Just noticed that a few weeks ago when the bathroom light shone on it from above).
Dent in fontanel on back of head. (Can’t get proof without shaving head so would have to show physically).
Huge belly (Cortisone? - Addison's or Cushing's or whatever? (Don’t want to show that on pictures but it’s obvious physically).
Many brown marks on face including one about 3 inches. Had one removed on other side of face many years ago because of unusual cell growth. Also have immediate family member with skin cancer. (Have proof on pictures. Don’t have proof of prior removal but do have name of surgeon in another province who removed other large brown spot).
Teeth spreading – not just bottom but both top and bottom! (Have proof from older tooth molds but dentists won’t compare because they don’t believe that any tumour would cause tooth widening.)
Jaw widening (Entire jaw has grown – not just bottom – Have proof on pictures)
Accidental biting of lip repeatedly for a few days at a time, sometimes, likely due to the slight jaw misalignment. (Can prove only when it happens, physically. Could also take pictures too I suppose. Keep biting same spot).
Rough Facial skin (Have proof on pictures).
Snoring & Choking (Not allowed to be tested like most people so can’t prove this, but have waken suddenly, hearing myself and have also waken frequently with very fast heartbeat, and choking). In fact, I snore with my mouth closed!
Breathing problems at night (right side of nose I particular). Breathing is always difficult except for when nose runs. That can likely be prove too. (Small growth on inside of nose can be seen by the eye).
Also used to have very serious respiratory symptoms causing a “lot” of bleeding (and loss of voice for 6 weeks at a time) but managed to get rid of that by sneaking down to the flu centre and pleading for a pneumonia shot.
Heat intolerance (& sometimes really wild temperature control that can change from minute to minute, or even change the second I lie down) (Can’t prove this although I did move from one province to this colder one due to unbearable heat).
Constant sneezing about 25 times a day (No proof. Don’t care to film this!)
Multiple Skin Tags (Plenty of visual proof. Don’t care to take pictures)
Many Changes in Skin (Plenty of visual proof. Don’t care to take pictures. No comparison pictures)
Many Moles & Nevi (Plenty of visual proof but didn’t care to take pictures.) Some large irregular itchy ones have been sprayed off by doctor with a spray can) Couple that were sprayed remain. Not allowed to see skin specialist.
Obesity (Visual proof of course. Never could lose the over 100 pounds of weight gain put on by anti-psychotics given when I first lost my cognition). Now weight about 240 pounds. They weren’t concerned when I told them that those pills made the tumour grow (and it did!)
Incontinence (mainly one type but sometimes two) Don’t have proof but do have other problems as a result that could provide evidence.)
Severe headaches some days (migraines, sometimes in two directions & sometimes spongy feeling (greatly improved on Cabergoline). Can’t prove that – or maybe could from dozens of MRI pictures – about four sets over the years).
Increasing diplopia in each eye when stressed, now sometimes three levels. (Intermittent like muscle seizures, so can’t prove except on one neurologist comment report of my own complaint many years ago. When it’s intermittent it can’t be tested, but it’s very severe when it does happen).
Decreasing vision in eyes – going blind too quickly, I think especially in left eye – or cataracts. (May be able to prove, certainly with eyeglass prescription, but don’t have reports from numerous eye specialists. They could likely be obtained).
Left Ventricular Hypertrophy (Have proof from EKG’s).
Bradycardia and low voltage (Have proof from EKG’s. Not allowed to get heart testing.)
At one time a test also showed tachycardia). (Have proof of that too on EKG report).
Painful bleeding hemorrhoids for several years (no cause) – Have had colonoscopy & sigmoidoscopy. Sigmoidoscopy was extremely painful and showed “inflammation only” so had colonoscopy. Wasn’t aware of the pain because of hypnotic drugs given in colonoscopies, but report said they couldn’t finish it due to patient discomfort. (That was probably because this likely triggered violent spasms (like the sigmoidoscopy did) due to normal tendency for other muscles to go into spasms)
Low Immune system (at one time but gradually strengthening. (Have plenty of proof from long string of medical records)
Prolactin variation – Once 130 and dropped to 7 on Cabergoline) (Have proof from lab reports)
Shingles.(Had before cancer. Was prescribed drug but don’t have any report about this. Proof could be obtained by contacting doctor).)
Breast Cancer (Everyone has proof of that. Have not only lab report but also pictures).
Frequent falling due to really stiff gait sometimes (hopefully not caused by gadolinium).
Swelling and arthritic ankles. (Have proof of that in pictures and lab reports).
Swelling 3rd and 4th toe of right foot at night, so much so that the nail is bigger than on the other foot and a bit bubbly shaped.
Severe advanced degenerative disk disease – osteoarthritis
Have had 1 broken finger, 1 broken wrist, and two ankles broken over the years due to lack of balance. Last ankle was in cast for well over a year. Especially scared of walking in winter. Not allowed to get a handicap sticker. (Have proof of three out of the four broken bones on pictures or lab reports – not the broke finger).
Spine is much thicker than normal with very “severe” lordosis, pinched nerve and displaced tailbone – more to front of body – Guess it had no other direction to growl (Sometimes I almost believe that it’s the tailbone location that may be causing the difficulty with pap tests and daily rectal bleeding for so many years, as I am not constipated). (Have proof from MRI pictures).
Painful arthritis in right hip some days. (Don’t have proof of that one but may be able to obtain report from hospital after overall lower body violent muscle seizure prior, which caused serious disability for several weeks).
Severe muscle spasms which one one occasion seized up the entire bottom of my body and left me with an arthritic hip after being unable to get up or sit down for several weeks without using arm as a hip. (Have been taking anti muscle-spasm medicine for years. That’s the only proof I have, a well as one ambulance trip from lower body seizure.) Immediate family member has epilepsy.
Lost knee and ankle reflexes. (Have proof of that in neurologist report)
No sex drive whatsoever for many years (Have no proof other than no husband or boyfriend).
Pap tests almost impossible now – very painful. (Can likely get proof from doctor’s offices).
Sneezing about 25 times a day, unexpected nasal drip and difficulty breathing at night. (Can’t prove because not in the mood to take pictures during those times)
Thyroid Problems (Fluctuates. Was once high and I was on thyroid pills for a few months but then I found out how to regulate it, although it does move up and down at each test). (Can prove from previous lab tests)
Suffered from severe cognitive problems when all of this started. (Plenty of proof in medical reports).
Extreme fatigue – Cabergoline cured that for a short while but am now getting more and more tired again. Can’t sleep well throughout night so need a few pick-me-ups during the day.
Menstruation stopped already when tumour was very small (less than 3mm) and tests showed no sign of menopause yet. (Don’t think there is proof in medical records because doctor who handled that died quite awhile ago. Don’t know if those records were forwarded).
Scanty hair in places where it should be thick and hair in places where it shouldn’t be.
Severe gastrointestial problems (many loose bowel movements a day (now cured by Cabergoline)
Carpal tunnel syndrome and oily skin are about the only acromegaly symptoms I don’t have!
I fear I will soon die which I am now suffering from because Calgary doctors are denying that I not only have acromegaly, but they also are totally unaware (and won’t believe) that acromegaly has any connection whatsoever to do with cancers, including colorectal or melanoma, the most dangerous of all, and those which I may be most subject to.
They are also denying that a person can have both high prolactin and growth hormone at the same time, (false) especially since my tests won’t show the growth hormone.
Even though I have pictures to prove all of the facial growth, they don’t think my nose is big enough to have acromegaly. (It’s huge!)
Even my dentist is denying that it is possible for any pituitary tumour to cause teeth to spread. I am not only dying rapidly but am going crazy due to the lack of knowledge of Alberta specialists.
The last time I was allowed to see an endocrinoligst was several years ago although I did see a neurologist who says there is nothing they can do. (They already told me when the tumour was much smaller that operating on such things would be deadly so it would be much more deadly now).
I have never been referred to a rheumatologist. I’m not allowed to get heart tests even though my EKG’s show left ventricular hypertrophy (and before I was put on Cabergoline they also showed tachycardia on one and bradycardia and low voltage on the other. I had also been suffering from extremely severe irregular heartbeats (but much of that was made regular by the Cabergoline because it speeded up the heartbeat tremendously. Was way too slow before). My last EKG only showed LVH.
I worry that I am now dying and I know that it won’t be long before I’m dead from one of the following:
Numbness in left side of face ((Haven’t smoked in years because that makes it severe and causes dizziness).
Daily painful rectal pain and bleeding for several years (without any cause) which could lead to cancer.
Large, irregular itchy moles which are currently being spayed off with a can by doctor.
Spine will break or choke out breathing.
Breast cancer will spread.
Even the thought of dying without ever having this disease properly categorized, but rather listed as nothing other than a plain ordinary stroke, colorectal cancer, melanoma, heart disease or cancers is really upsetting because I sincerely believe it is acromegaly and there are probably many thousands of people dying from the same thing only because the real underlying cause of their diseases are being denied, and/or because doctors won’t properly test for it and refuse to acknowledge it can possibly exist without elevated IGF-1. OGTT, or cortisone level (especially when the patient is only allowed one test in a lifetime of tumour growth) and the tumour has quadrupled in size.
Since then they have given me only the overnight fasting glucose and HA1C tests, instead of the OGTT, claiming they are just as good, in spite of the fact that I have told them that endocrinolgist web sites say they are not. Why won’t they give me the right tests? Is it because of cost?
I believe that acromegaly is not only uncommon, but is probably very common and even the biggest killer in the world, although undiagnosed.
Doctors simply tell me to stop reading the Internet, but like most people with this pituitary diseases, all of us (especially those who have many signs of acromegaly) believe we will die for sure if we don’t educate them.
I want this posted before my death because I know I will be dead within five years (and possibly even with one) due to the fact that the medical profession is taught almost nothing about this disease. That, in turn, could lead to a lack of understanding also that the killer disease offshoots of this disease could be doubly dangerous for people with acromegaly-like symptoms compared to others.
TESTS
HA1C test a little too high about 8 months ago (but later test showed normal), (I rarely eat sugar or junk food)
Glucose Tolerance fasting usually just over 5,mmol/L
Glucose Tolerance 2.0H 8.2 mmo/L
IGF-1 = 75 ug/L in 2007 (Mind you, that was taken just before I got cancer and I understand cancer, high estrogen, and obesity can lower it, but I doubt most doctors would know that)
Recently I really pushed for the OGTT although that did upset them tremendously because I’m so preoccupied with this. (Preoccupied? Heck, I’m dying!)
Glucose Fasting, 5.0 mmo/L (12.5 hours)
Triglycerides once “extremely”high due to anti-psychotic drugs after severe loss of cognition for a few years when all of this started. At one time they were so high that cholesterol couldn’t be measured.
Problems with vitamin D (can’t keep high enough) When I take extra, liver gets very sore.
I have been taking 1/2 of a .5 pill of Cabergoline every week for about a year now and my tumour size is still 1.2 cm Mind you, it did drop the prolactin very very fast, from 130 down to 7.
Once I asked my doctor how long I should be on it, he said to try getting off to see what would happen. I tried that for three months, experiencing extremely severe withdrawal symptoms, such as highly irregular heartbeat, violent and horrible sweating, dizziness, extremely severe migraines lasting for days, many other really horrible symptoms and an immediate rise in prolactin again so I had to go on it again.
Again, they keep saying that in spite of all of the thing above, I can’t possibly have acromegaly because my one-time cortisone, IGF-1 test and OGTT test was normal. I would really like to know what other disease in the entire world could cause all of these things
(which I can prove by pictures, x-rays, many MRI’s and EKG’s, if it isn’t acromegaly! I can provide that proof because I have copies of not only the tests but the pictures.
This whole thing sounds so crazy (including the denials to see specialists) that it’s driving me crazy!
Is there no other way to diagnose it this disease they claim is so rare, but one that likely thousands could be suffering from because, like me, they simply aren’t being properly diagnosed due to the fact that no doctors knows much about the disease, and endocrinologists don’t know much more?
I understand that while some countries claim the incidence of this disease is very low, Germany claims it' about 10 times higher than what other countries report. Having lived in Germany before, I am aware that they have some of the best doctors in the world so are probably much more aware of the disease as well as the urgency of detecting it early.
Whether or not I get an answer, I want this documented publicly before my death for the sake of thousands of others who may also die from serious conditions due to the inability to identify the disease.
If you have had a relative who was tall, and whose death report said any of the following: arthritis, heart disease, left ventricular hypertrophy, diabetes, obesity, melanoma, colorectal cancer, breast cancer, balance problems and/or serious falls, spinal degeneration, heart disease, including left ventricular hypertrophy in particular, severe gastrointestinal disorders such as Crone's disease, respiratory or lung disorders, swelling of the liver, spleen, or kidneys, muscular disorders,etc., chances are that they too really died from this undiagnosed disease.
Another thing – if you have breast cancer, or your periods have stopped early, please insist on a simple prolcatin blood test. It could save your life! High prolactin can cause cancer to spread directly to the lymph nodes. It might be good to get calcium from a source other than milk as well. (Chinese women don't drink much milk and rarely get breast cancer. The University of Edmonton also invented a drug (not yet approved) to cure cancer that I believe somehow involved the suppression of lactic acid.
One out of every five people or so has a pituitary tumour. Most were likely caused by the injection of the SV40 live monkey virus in the polio shots in the 1950's, which passed on the cancer causing monkey DNA which will be in your generations' blood also. They discovered this over a decade ago when they found out that these tumours contained the monkey virus. For more information on the topic, go to You Tube and type in Merck SV40 polio.
Most of those tumours won’t grow much and won’t be serious unless patients develop many of the symptoms above, but at least if they have high prolactin that should be monitored closely to give doctors an idea of possible tumour growth and the need for much quicker intervention and/or surgery.
If you have questions about pituitary problems, don’t ask doctors because most will not have been taught a thing about this in medical school. That was because the disease was once believed to be extremely rare because of the length of time the disease took to exhibit itself in so many ways, and because of the costs of detecting and monitoring it.
Today, the disease seems quite common. I myself know of three others who were lucky enough to get the surgery in time before it advanced too far.
Most people who have it will die about 10-15 years earlier than most so it's critically important to catch early. The longer it is left undetected, the more other serious, chronic, and deadly diseases will build up on top of it.
Even most dentists are totally unaware that tumours can cause tooth spacing to widen. They will insist this is impossible.
Acromegaly patients will often be accused of being hypochondriacs because half will be driven nearly crazy out of severe desperation to find out what is killing them that they will practically become walking encyclopedias on the subject. It’s those patients themselves who must educate doctors.
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