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need help please read

Posted In: Medical Stories 25 Replies
  • Posted By: alexburton
  • July 23, 2008
  • 06:28 AM

It started with an injury I had several years ago. I was hit on the upper lip by a hockey puck. The speed of the puck caused some serious damage. One of the philtrum columns broke. Complicating things was the fact I had pot and speed in my system. That fact led me to avoid the hospital until the next morning. I was dumb, I know.

Nothing much was done at the hospital. Was told to wait for the swelling to go down.
It was obvious there was some structural change to my face above the lip below the nose. Days later I went back to the hospital only to have the doc tell me I was ok.(I went back several times over the next few weeks) I had a full neurological exam which was normal.

Over time I started to notice these odd changes in my appearance. It was as if my body did not know how to adapt to the injury. I would get spasms/twitches under the skin at the site of the injury and all over my body(mostly on the face) over the next couple years my face seemed to lose all its muscle and definition. I don’t know how to say this other than my face and body seemed to slowly be losing some kind of tissue.

I kept losing some tissue everywhere on my body- my arms, my face, my legs. My head has gotten smaller, my face smaller, my lower lip has lost a lot of tissue,my penis shrunk and lost tissue and I have lost the ability to feel an orgasm. Yes over time all these things have happened. These things that have happened to me should be impossible. Was it the drugs in my system at the time combined with the injury that started some chain reaction? I have no idea. Docs havn’t been any help either. I’ve been to many of them.

During this time I also started to experience hormonal changes.After going to a couple endrocrinologists I was diagnosed with hypopituatarism with growth hormone deficiency(I’m now on GH treatment) . The MRI of the pituitary didn’t show a pituitary tumor though. That diagnoses explained the swollen stomach and the muscle loss but not the the crazy stuff that was happening to me . A tumor wouldn’t cause some of the things that are happening to my body. In theory what is happening to me shouldn’t be happening and probably has never happened to anyone else before.

So I researched the pituitary gland and read that part of the pituitary gland is made up of epithelium tissue. In fact the part that secretes growth hormone is made of epithelium tissue. Epithelium tissue covers practically the whole body. Could the initial injury caused some damage to the epithelium tissue that has just gotten out of control? The pituitary problem is a big big clue as to what is affecting my whole body I know this much. I am sure there is something wrong with either mucous membrane,epithelium tissue, fascia, or connective tissue (or all of the above)

Now the problem is finding a Doctor that is going to help me.I’ve been to around 10 Docs and none have been any help. In fact none have even tried. Several of them said I should see a psychiatrist! One of my regrets through all this is that I didn’t stick with one doctor through all this so he could notice all the changes I’ve gone through. The only problem with that is when a doc tells you to see a psychiatrist it’s pretty much time to find another doc. Mind you I’ve never just walked into a doc’s office and said “hey doc my head is shrinking” I’ve explained the whole story in a rational way. The problem is what’s happening to me is impossible and it defies every law of medicine.

So any advice would help. What kind of doctor/specialist I should see? I need to get biopsy’s of all my tissues and most of all I need a doc to really aggressively go after this with me because I am really running out of time.

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25 Replies:

  • Alex, First, Go to this website at Mayo Clinic: http://www.mayoclinic.com/health/hypopituitarism/DS00479/DSECTION=causes It definitely states that your problems can be initiated from a head injury. Sorry. It does talk about treatments. Which was my first thought that you were not on all the meds necessary for your problems. I have rare metabolic problem that screws up a lot of other stuff in body, including pituitary. So have had the hormone problems also. You may have to take growth hormone, thyroid, testosterone and other things. Don't know where you live, do you have a large university with endocrinology group? Yes you need to stay with doctor who can monitor your meds and physical problems. You need to find doctor who is comfortable treating this problem. Again don't know what city, if small area this may be more difficult. Use google and read more about and use the word symptoms or treatment. Will give you some sources with research and all. Good luck. This will probably be a life time issue now, so need to find a doctor who you can stick with and treat.
    Abbydoodle 138 Replies Flag this Response
  • Alex, First, Go to this website at Mayo Clinic: http://www.mayoclinic.com/health/hypopituitarism/DS00479/DSECTION=causes It definitely states that your problems can be initiated from a head injury. Sorry. It does talk about treatments. Which was my first thought that you were not on all the meds necessary for your problems. I have rare metabolic problem that screws up a lot of other stuff in body, including pituitary. So have had the hormone problems also. You may have to take growth hormone, thyroid, testosterone and other things. Don't know where you live, do you have a large university with endocrinology group? Yes you need to stay with doctor who can monitor your meds and physical problems. You need to find doctor who is comfortable treating this problem. Again don't know what city, if small area this may be more difficult. Use google and read more about and use the word symptoms or treatment. Will give you some sources with research and all. Good luck. This will probably be a life time issue now, so need to find a doctor who you can stick with and treat.thanks for the response. Hypopituitarism is a very tiny part of what my problem is . It is just a big clue because of what makes up the pituitary(epithilium tissue) and what covers the rest of the body.There is something affecting tissue throughout my body. It's not endocrinological . It just so happens whatever is affecting my tissue has affected the tissue of the pituitary gland and that has caused the endocrine problems. My post is not about those problems . It's about what is happening to me that is really unbelievable and not explainable.
    alexburton 48 Replies Flag this Response
  • Sweetie, If you are describing losing all shape, muscle, etc. that can be tied to the pituitary and other glands not working. If your body does not make the right hormones, you lose collegen, skin tone, your genitals shrink, all of the symptoms you describe can be contributed to that type of disorder. Now it may not be. But if it is, you usually have to take more than Growth hormones. Women can have the same problems. Causes of secondary hypopituitarism (affecting the hypothalamus):tumors of the hypothalamusinflammatory diseasehead injuriessurgical damage to the pituitary and/or blood vessels or nerves leading to itThink about it , if your body is not working right --it is like premature aging. You are losing what holds your skin together --you can have what looks like premature aging. With no hormones working right it does affect your skin. Always has. your skin thins (like old people), you lose your collegen (lips and such) your head loses fat and shape (like a little old man). In women it affects the vulva the walls thin and loses elactisicty (sp). So I am sure there are impacts on a man. Since you had head injury it is within all possibilities you triggered this issue and damage. If so, it will take time and several medications to build your body back up. Symptoms include pale waxy skinfinely textured skin (your complaint)wrinkled skinloss of body hairIntolerance to cold, fatigue, weight gain, constipationexcessive thirst and frequent urinationThe face may appear finely wrinkled and contain a disinterested expression.low blood sugarFatigueA decline in energyMuscle weaknessNauseaConstipationWeight loss or gainA decline in appetiteAbdominal discomfortSensitivity to cold or difficulty staying warmVisual disturbancesJoint stiffnessHoarsenessFacial puffinessHeadachesTreatment --if you have this with the thinning of skin and loss of skin collegen, you probably will need testing and may need medications in these areas: TreatmentTreatment differs widely, depending on the age and sex ,severity of the deficiency, the number of hormones involved, and even the underlying cause of the hypopituitarism. Immediate hormone replacement is generally administered to replace the specific deficient hormone. Patient education is encouraged to help patients manage the impact of their hormone deficiency on daily life. For instance, certain illnesses, accidents or surgical procedures may have adverse complications due to hypopituitarism.Gonadotropin deficiencyReplacement of gonadal steroids is common treatment for LH and FSH deficiency. Testosterone for men will be prescribed in the lowest effective dosage possible, since there can be complications to this therapy. To restore fertility in men, regular hormone injections may be required. Male and female patients whose hypopituitarism results from hypothalamic disease may be successfully treated with a hypothalamic releasing hormone (GnRH), which can restore gonadal function and fertility.Thyroid stimulating hormone deficiencyIn patients who have hypothyroidism, the function of the adrenal glands will be tested and treated with steroids before administering thyroid hormone replacement.Adrenocorticotopic hormone deficiencyHydrocortisone or cortisone in divided doses may be given to replace this hormone deficiency. Most patients require 20 mg or less of hydrocortisone per day.Growth hormone deficiencyIt is essential to treat children suffering from growth hormone deficiency. The effectiveness of growth hormone therapy in adults, particularly elderly adults, is not as well documented. It is thought to help restore normal muscle to fat ratios. Growth hormone is an expensive and cautiously prescribed treatment. As you see it is not just one medicine. When they were treating me, I took several. So if you really are concerned about you skin and structure I really recommend completely ruling out the diagnosis and treatment in these areas. You admit you had the diagnosis but did no regularly follow up with one doctor. You have been given RX for the growth hormone, you really really probably need other hormones also. But what ever you choose to pursue is your chose, I wish you the best of luck. Maybe it is something else rare. IF there are are other crazy symptoms that those listed above, let use know. Will hope for your daily. Are you having doctor avoidance? :cool:
    Abbydoodle 138 Replies Flag this Response
  • Sweetie, If you are describing losing all shape, muscle, etc. that can be tied to the pituitary and other glands not working. If your body does not make the right hormones, you lose collegen, skin tone, your genitals shrink, all of the symptoms you describe can be contributed to that type of disorder. Now it may not be. But if it is, you usually have to take more than Growth hormones. Women can have the same problems. Causes of secondary hypopituitarism (affecting the hypothalamus):tumors of the hypothalamusinflammatory diseasehead injuriessurgical damage to the pituitary and/or blood vessels or nerves leading to itThink about it , if your body is not working right --it is like premature aging. You are losing what holds your skin together --you can have what looks like premature aging. With no hormones working right it does affect your skin. Always has. your skin thins (like old people), you lose your collegen (lips and such) your head loses fat and shape (like a little old man). In women it affects the vulva the walls thin and loses elactisicty (sp). So I am sure there are impacts on a man. Since you had head injury it is within all possibilities you triggered this issue and damage. If so, it will take time and several medications to build your body back up. Symptoms include pale waxy skinfinely textured skin (your complaint)wrinkled skinloss of body hairIntolerance to cold, fatigue, weight gain, constipationexcessive thirst and frequent urinationThe face may appear finely wrinkled and contain a disinterested expression.low blood sugarFatigueA decline in energyMuscle weaknessNauseaConstipationWeight loss or gainA decline in appetiteAbdominal discomfortSensitivity to cold or difficulty staying warmVisual disturbancesJoint stiffnessHoarsenessFacial puffinessHeadachesTreatment --if you have this with the thinning of skin and loss of skin collegen, you probably will need testing and may need medications in these areas: Treatment Treatment differs widely, depending on the age and sex ,severity of the deficiency, the number of hormones involved, and even the underlying cause of the hypopituitarism. Immediate hormone replacement is generally administered to replace the specific deficient hormone. Patient education is encouraged to help patients manage the impact of their hormone deficiency on daily life. For instance, certain illnesses, accidents or surgical procedures may have adverse complications due to hypopituitarism.Gonadotropin deficiency Replacement of gonadal steroids is common treatment for LH and FSH deficiency. Testosterone for men will be prescribed in the lowest effective dosage possible, since there can be complications to this therapy. To restore fertility in men, regular hormone injections may be required. Male and female patients whose hypopituitarism results from hypothalamic disease may be successfully treated with a hypothalamic releasing hormone (GnRH), which can restore gonadal function and fertility.Thyroid stimulating hormone deficiency In patients who have hypothyroidism, the function of the adrenal glands will be tested and treated with steroids before administering thyroid hormone replacement.Adrenocorticotopic hormone deficiency Hydrocortisone or cortisone in divided doses may be given to replace this hormone deficiency. Most patients require 20 mg or less of hydrocortisone per day.Growth hormone deficiency It is essential to treat children suffering from growth hormone deficiency. The effectiveness of growth hormone therapy in adults, particularly elderly adults, is not as well documented. It is thought to help restore normal muscle to fat ratios. Growth hormone is an expensive and cautiously prescribed treatment. As you see it is not just one medicine. When they were treating me, I took several. So if you really are concerned about you skin and structure I really recommend completely ruling out the diagnosis and treatment in these areas. You admit you had the diagnosis but did no regularly follow up with one doctor. You have been given RX for the growth hormone, you really really probably need other hormones also. But what ever you choose to pursue is your chose, I wish you the best of luck. Maybe it is something else rare. IF there are are other crazy symptoms that those listed above, let use know. Will hope for your daily. Are you having doctor avoidance? :cool:
    Abbydoodle 138 Replies Flag this Response
  • Sweetie, If you are describing losing all shape, muscle, etc. that can be tied to the pituitary and other glands not working. If your body does not make the right hormones, you lose collegen, skin tone, your genitals shrink, all of the symptoms you describe can be contributed to that type of disorder. Now it may not be. But if it is, you usually have to take more than Growth hormones. Women can have the same problems. Causes of secondary hypopituitarism (affecting the hypothalamus):tumors of the hypothalamusinflammatory diseasehead injuriessurgical damage to the pituitary and/or blood vessels or nerves leading to itThink about it , if your body is not working right --it is like premature aging. You are losing what holds your skin together --you can have what looks like premature aging. With no hormones working right it does affect your skin. Always has. your skin thins (like old people), you lose your collegen (lips and such) your head loses fat and shape (like a little old man). In women it affects the vulva the walls thin and loses elactisicty (sp). So I am sure there are impacts on a man. Since you had head injury it is within all possibilities you triggered this issue and damage. If so, it will take time and several medications to build your body back up. Symptoms include pale waxy skinfinely textured skin (your complaint)wrinkled skinloss of body hairIntolerance to cold, fatigue, weight gain, constipationexcessive thirst and frequent urinationThe face may appear finely wrinkled and contain a disinterested expression.low blood sugarFatigueA decline in energyMuscle weaknessNauseaConstipationWeight loss or gainA decline in appetiteAbdominal discomfortSensitivity to cold or difficulty staying warmVisual disturbancesJoint stiffnessHoarsenessFacial puffinessHeadachesTreatment --if you have this with the thinning of skin and loss of skin collegen, you probably will need testing and may need medications in these areas: Treatment Treatment differs widely, depending on the age and sex ,severity of the deficiency, the number of hormones involved, and even the underlying cause of the hypopituitarism. Immediate hormone replacement is generally administered to replace the specific deficient hormone. Patient education is encouraged to help patients manage the impact of their hormone deficiency on daily life. For instance, certain illnesses, accidents or surgical procedures may have adverse complications due to hypopituitarism.Gonadotropin deficiency Replacement of gonadal steroids is common treatment for LH and FSH deficiency. Testosterone for men will be prescribed in the lowest effective dosage possible, since there can be complications to this therapy. To restore fertility in men, regular hormone injections may be required. Male and female patients whose hypopituitarism results from hypothalamic disease may be successfully treated with a hypothalamic releasing hormone (GnRH), which can restore gonadal function and fertility.Thyroid stimulating hormone deficiency In patients who have hypothyroidism, the function of the adrenal glands will be tested and treated with steroids before administering thyroid hormone replacement.Adrenocorticotopic hormone deficiency Hydrocortisone or cortisone in divided doses may be given to replace this hormone deficiency. Most patients require 20 mg or less of hydrocortisone per day.Growth hormone deficiency It is essential to treat children suffering from growth hormone deficiency. The effectiveness of growth hormone therapy in adults, particularly elderly adults, is not as well documented. It is thought to help restore normal muscle to fat ratios. Growth hormone is an expensive and cautiously prescribed treatment. As you see it is not just one medicine. When they were treating me, I took several. So if you really are concerned about you skin and structure I really recommend completely ruling out the diagnosis and treatment in these areas. You admit you had the diagnosis but did no regularly follow up with one doctor. You have been given RX for the growth hormone, you really really probably need other hormones also. But what ever you choose to pursue is your chose, I wish you the best of luck. Maybe it is something else rare. IF there are are other crazy symptoms that those listed above, let use know. Will hope for your daily. Are you having doctor avoidance? :cool:the loss of muscle has to do with the GH defiency. Genitals do not shrink because of hypopitutarism...testicles may shrink bcuz of lack of testosterone.i've been tested for every hormone. My testosterone is fine. thyroid is fine etc etcThe answers i am searching for are not endocrinlogical. I already know what the GH defiency has done to me as far as fatigue weight gain etc. I am looking for answers as to the incredible things that are happening.LIke i said already : There is something affecting tissue throughout my body. It's not endocrinological . It just so happens whatever is affecting my tissue has affected the tissue of the pituitary gland and that has caused the endocrine problems.part of the pituitary gland is made of epithilium tissue. If the initial injury caused some immune response that damaged my epithilium tissue it may have continued to spread throughout my body. That's where i'm going with this. I would bet if a doc did an epithilium tissue biopsy something might be found. I just need to find the right specialist that would do one.
    alexburton 48 Replies Flag this Response
  • Good luck. Just don't think the outer skin of the pituitary glan is the issue. B ut then I am not a god, only a mere person so the best with your search.
    Abbydoodle 138 Replies Flag this Response
  • the initial injury caused some chain reaction which continues to this day. it is destroying tissue throughout my body.my actual head has gotten smaller by more than 2 inchesthe inside of my cheeks on my face feels like bubbles like the tissue is broken up.every part of my body has atrophied far beyond anything that would happen with just GH deficiency or any other endocrine problem.if i had to guess i'd say that i may not have any epithliuem tissue in my body anywhere.what i know is this...what has happened to me has never happened to another human being before.
    alexburton 48 Replies Flag this Response
  • I think you are right about your symptoms and I think it is perhaps some previously unknown autoimmune dysfunction. You may wish to consider this or not: I suggest you research NAET and try to visit Dr. Devi Nambudripad in LA. She is incredible and has helped a lot of people. She may be able to help reprogram your brain to stop destroying your epithelial tissue, if in fact that is what is happening to you. Best wishesDOM
    acuann 3080 Replies Flag this Response
  • I think you are right about your symptoms and I think it is perhaps some previously unknown autoimmune dysfunction. You may wish to consider this or not: I suggest you research NAET and try to visit Dr. Devi Nambudripad in LA. She is incredible and has helped a lot of people. She may be able to help reprogram your brain to stop destroying your epithelial tissue, if in fact that is what is happening to you. Best wishesDOM thanks the naet info but i don't think i'm gonna consider that right now. I spent last night reading about it and it doesn't sound like i have any allergies. but the autoimmune dysunction may be the way to go. I remember i went to a dermatologist a couple years ago(i've been to over 20 docs) and he mentioned that it may be an autoimmunue process and that the process would have to be stopped. He said it was out of his expertise. I took what he said to other docs but i've just had a ***l of a time getting help. There is some kind of autoimmune process and it's not going to stop unless some kind of treatment stops it. I just get progressively worse and worse. Just when i think it can't get any worse it does. Another thing that points toward something destroying my epithielial tissue faster than it can regenerate is the feeling on the inside of my mouth. The texture is kind've like bubbles under the skin and if i drink something harsh like a soda or hard alchohol(i drink neither becuase of this) i get a very raw feeling under the skin where the tissue is followed by what feel like muscle twitches or some kind of tissue fascilations. It could be some kind of tissue or mucous membrane. i wonder if there are any tests that could show if there was some kind of autoimmune process?...either blood tests or possibly tissue biopsies. thats what i need to find out. I am hesitant to make another appointment with a doc until i know exactly what kind of doc could help me.
    alexburton 48 Replies Flag this Response
  • I'm going to jump in here, because, though I'm female and didn't suffer any injuries like what you describe, I've experienced some of your symptoms - specifically, a few years ago I began to lose muscle mass - everywhere - but it was especially pronounced in my facial muscles, arms, legs - my ribs were sticking out. I dropped to 88 lbs, in fact, and my genitals became sucked in and remain that way somewhat, though my hormone levels are fine. I also have greater difficulty having an orgasm - in fact, it was next to impossible at one point, and even though I am now able to orgasm again, my clitoris never, for lack of a better word, swells. It's almost as if I am orgasming through different nerve connections and no 'signal' is getting to my clitoris to swell. I also have to insert something to 'complete the connection' - if that makes any sense. I am no longer able to orgasm without doing that. But by any chance are you a cell phone user or cordless phone user? I learned I was electrosensitive. It is very possible that your injury, combined with the drugs in your system at the time of the injury, along with exposure to the electromagnetic/microwave/radiowave field of your cell phone sent different 'instructions' to your pituitary gland when your body was trying to heal itself. Some wrong exposure to EMF/RF could have caused your immune process to go haywire and turn against you. Or perhaps the chemicals in your bloodstream were able to cross the blood-brain barrier at some time after your injury, and that is what is disrupting your pituitary gland? Here is some info on electrosensitivity, and what these frequencies are capable of doing. Pay special attention to the Bioinitiative Report below and Dr. Lai's research on the blood-brain barrier. Electrical Sensitivity & Hypersensitivity: http://www.ei-resource.org/illness-information/related-conditions/electrical-sensitivity-&-hypersensitivity/ Bioinitiative Report: http://www.bioinitiative.org/report/index.htm Neurological Effects of Radio Frequency Electromagnetic Radiation Relating to Wireless Communication Technology - Dr. Henry Lai Blood-Brain Barrier, Cellular Morphology of the Brain, Neural Electrophysiology, Changes in Neurotransmitter Functions, Metabolic Changes in Neural Tissues, Cytogenetic Effects: http://www.emrnetwork.org/research/laibrussels.pdf Neurological Effects of Radiofrequency Electromagnetic Radiation - Dr. Henry Lai http://www.emrnetwork.org/research/laivienna.pdf Memory and Behavior - Dr. Henry Lai http://www.emrnetwork.org/research/laiwho.pdf I would also suggest you have a doctor test your anti-striatal muscle antibodies - mine were equivocal (indicating autoimmune disease). But the pituitary gland is very sensitive to this type of radiation, and it does sound like some sort of neurologically-rooted endocrine problem with the twitching that preceeded the whole event. Here is an article on mobile phones and how they affect cell division and growth cycles... http://www.telegraph.co.uk/news/uknews/1561675/Mobile-phone-use-and-cancer-linked.html I know they didn't find any pituitary tumors, but this radiation can certainly affect the pituitary without actually producing a tumor.hmm im not surebut this did happen well before i had a cell phone and i don't notice any symptoms when i'm around cell phones etcdo you have this? if so how were you treated? cured?
    alexburton 48 Replies Flag this Response
  • All mine started occuring in 1957, way before cell phones. And some of our homes were fer away from anything cept cotton or milo.
    Abbydoodle 138 Replies
    • August 11, 2008
    • 06:42 PM
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  • following that lead on auto immune process really got me to where i think i know whats going on now.the initial injury caused some auto-immune proccess where my immune system started to attack healthy tissue/cells. the initial injury caused some structural changes to my philtrum. My theory is those changes caused the auto immune process much like how when someone gets an organ transplant there is a chance an auto-immune response will reject the organ. Over time my immune system may have started to treat some tissue in my body as hostile. My theory has been that is is epithelium tissue due to the evidence i have of damage to the pituitary which is made of epithelium. when an organ transplant is rejected by ones own body the patient is given a immunosupprresantif what happened did in fact cause some auto-immune process i am wondering if that process could be stopped with treatment of immunosuppresants.well any advice or comments will be greatly appreciated. for the first time in ages i am moving towards some answers. I still have to convince a DR of all this.
    alexburton 48 Replies
    • August 15, 2008
    • 07:40 AM
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  • hmm what kind of dr would deal with auto immune dysfunction of body tissues?
    alexburton 48 Replies
    • August 20, 2008
    • 08:37 PM
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  • well i went and got a ana blood test and immunoglobin iga blood test through a direct lab (not through a doctor) and both came out normal. I was hoping one of them would show some auto immune processi am really at the edge of my rope here. The only explanation for what is happening is some kind of auto immune process that is attacking some body tissueanyone know if there are any other blood tests i should get or if i should try these same tests againi am back to square one
    alexburton 48 Replies
    • August 30, 2008
    • 08:09 PM
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  • since taking growth hormone this auto-immune dysfunction has sped up.i read the literature about GH and one of the things it says it does is enhance immune system. that could explain why i feel that it has sped up. The GH is making my immune system stronger to attack itself.now what i really need is to find what kind of doctor to see. I am bumping this thread because it's been 2 mos and i'm still in the same situation not knowing what kind of doctor could help mei think i may have to try immunosuppresants to try to suppress the immune system.first thing i need is a frickin doctor to believe me. incredible.
    alexburton 48 Replies
    • October 2, 2008
    • 03:30 AM
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  • since taking growth hormone this auto-immune dysfunction has sped up. i read the literature about GH and one of the things it says it does is enhance immune system. that could explain why i feel that it has sped up. The GH is making my immune system stronger to attack itself. now what i really need is to find what kind of doctor to see. I am bumping this thread because it's been 2 mos and i'm still in the same situation not knowing what kind of doctor could help me i think i may have to try immunosuppresants to try to suppress the immune system. first thing i need is a frickin doctor to believe me. incredible. How long have you been taking growth hormone and are you taking injections? When did your symptoms develop - before or after starting this form of therapy?DOM
    acuann 3080 Replies
    • October 3, 2008
    • 03:43 AM
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  • It started with an injury I had several years ago. I was hit on the upper lip by a hockey puck. The speed of the puck caused some serious damage. One of the philtrum columns broke. Complicating things was the fact I had pot and speed in my system. That fact led me to avoid the hospital until the next morning. I was dumb, I know. Nothing much was done at the hospital. Was told to wait for the swelling to go down.It was obvious there was some structural change to my face above the lip below the nose. Days later I went back to the hospital only to have the doc tell me I was ok.(I went back several times over the next few weeks) I had a full neurological exam which was normal. Over time I started to notice these odd changes in my appearance. It was as if my body did not know how to adapt to the injury. I would get spasms/twitches under the skin at the site of the injury and all over my body(mostly on the face) over the next couple years my face seemed to lose all its muscle and definition. I don’t know how to say this other than my face and body seemed to slowly be losing some kind of tissue. I kept losing some tissue everywhere on my body- my arms, my face, my legs. My head has gotten smaller, my face smaller, my lower lip has lost a lot of tissue,my penis shrunk and lost tissue and I have lost the ability to feel an orgasm. Yes over time all these things have happened. These things that have happened to me should be impossible. Was it the drugs in my system at the time combined with the injury that started some chain reaction? I have no idea. Docs havn’t been any help either. I’ve been to many of them. During this time I also started to experience hormonal changes.After going to a couple endrocrinologists I was diagnosed with hypopituatarism with growth hormone deficiency(I’m now on GH treatment) . The MRI of the pituitary didn’t show a pituitary tumor though. That diagnoses explained the swollen stomach and the muscle loss but not the the crazy stuff that was happening to me . A tumor wouldn’t cause some of the things that are happening to my body. In theory what is happening to me shouldn’t be happening and probably has never happened to anyone else before. So I researched the pituitary gland and read that part of the pituitary gland is made up of epithelium tissue. In fact the part that secretes growth hormone is made of epithelium tissue. Epithelium tissue covers practically the whole body. Could the initial injury caused some damage to the epithelium tissue that has just gotten out of control? The pituitary problem is a big big clue as to what is affecting my whole body I know this much. I am sure there is something wrong with either mucous membrane,epithelium tissue, fascia, or connective tissue (or all of the above) Now the problem is finding a Doctor that is going to help me.I’ve been to around 10 Docs and none have been any help. In fact none have even tried. Several of them said I should see a psychiatrist! One of my regrets through all this is that I didn’t stick with one doctor through all this so he could notice all the changes I’ve gone through. The only problem with that is when a doc tells you to see a psychiatrist it’s pretty much time to find another doc. Mind you I’ve never just walked into a doc’s office and said “hey doc my head is shrinking” I’ve explained the whole story in a rational way. The problem is what’s happening to me is impossible and it defies every law of medicine. So any advice would help. What kind of doctor/specialist I should see? I need to get biopsy’s of all my tissues and most of all I need a doc to really aggressively go after this with me because I am really running out of time. Hi Alexburton, I would suggest that you look at our list of symtoms over at the b12 thread. http://forums.wrongdiagnosis.com/showthread.php?p=121596&posted=1#post121596 Functional natural b12 deficiencies can cause widespread epithlial problems everywhere in the body. In my experience a crash can be triggered by a physical injury, vaccination, illness or possibly any stressor. With over 200 nonspecific smptoms to choose from all sorts of disorders can be diagnosed from the list. A trial of the correct b12s plus cofactors can let you know pretty quickly if b12 will have an effect. My epithlial tissues showed substrantial healing within ten days of starting the correct b12 on top of all the basics that had been in place for years. Good luck.
    Freddd 3576 Replies
    • October 3, 2008
    • 04:51 PM
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  • Hi Alexburton, I would suggest that you look at our list of symtoms over at the b12 thread. http://forums.wrongdiagnosis.com/showthread.php?p=121596&posted=1#post121596 Functional natural b12 deficiencies can cause widespread epithlial problems everywhere in the body. In my experience a crash can be triggered by a physical injury, vaccination, illness or possibly any stressor. With over 200 nonspecific smptoms to choose from all sorts of disorders can be diagnosed from the list. A trial of the correct b12s plus cofactors can let you know pretty quickly if b12 will have an effect. My epithlial tissues showed substrantial healing within ten days of starting the correct b12 on top of all the basics that had been in place for years. Good luck.thanks for the responsei've had my b12 checked a couples times and it was in the normal rangei believe i know what it is happening. my immune system is attacking itself possibly attacking epithiluem tissue much faster than it can regenerate.out of curiosity...how did you know your epithial tissue showed healing?
    alexburton 48 Replies
    • October 4, 2008
    • 07:54 PM
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  • thanks for the response i've had my b12 checked a couples times and it was in the normal range i believe i know what it is happening. my immune system is attacking itself possibly attacking epithiluem tissue much faster than it can regenerate. out of curiosity...how did you know your epithial tissue showed healing? Hi Alexburton, Unfortunately b12 serum level is not a definitive test. If I had been tested, which I wasn't because I was taking 1000mcg of cyanob12 per day, mine would have turned out "normal" or even "high". Unfortunately I was dying from the funtional deficiencies I had despite the cyanob12. I am one of those people who body can't convert cyanob12 to the two active forms, methylb12 and adenosylb12. They are the only active in humans forms of b12. My whole mouth was inflamed and sore. My tongue was "beef-red" and was in burning pain all the time. My teeth were ultra sensitve hot and cold. Everything was irritating to my mouth. My bladder burned. My urethra burned. I had IBS. I could and did vomit at any time. My skin was rough and irritated, bumps all over the place. Lot's of infected folicles. I had irritated mucous membranes leading to thick sticky jellied mucous everywhere in my body. I had frequent pneumonias and used an asthma treatment, Albuterol. Everything irritated my skin. As to how my epithilial tissues healed, EVERYTHING, and I do mean everything, in the preceding paragraph has healed and is normal. Without the methylb12 plus cofactors my skin was unable to heal, unable to form the new tissue and doing it badly. Much of a malfunctioning immune system could also be caused by funtional b12 deficiencies as the proper funtioning of the immune system is 100% dependent on sufficient methylb12, and other things. I repeat, the serum level is totally irrelavant. A trial with one of the effective brands of natural active b12 along with necessary cofactors can tell you within a few weeks to months whether it will help you heal. A trial is the only definitive test for this. In ten days I no longer had a burning mouth, tongue or bladder. My tongue was on it's way to being normal again. A whole lot more happened too. But you were asking only about epithilial tissues. You are looking for an answer. I am offerring you an answer that is 100% compatible with your symptoms. You are free to try it on and see if it fits. Come on over and look at the list of symptoms and see how well they fit for yourself. Or you can keep looking for a better answer. However, if this one is correct, nothing else will repair your problems. People with functional b12 deficiencies despite serum levels essentially are rarely diagnosed correctly. Slightly better results can be obtained by testing for uMMA and serum homocysteine. These are tests for two out of the 600 or so places that there can be functional deficiencies. The items that made noticable differences in skin, hair and nails were in order, mb12, adb12, SAM-e, b-complex twice a day (up from once a day) and zinc at 65mg/day (up from 15mg). I was already taking all the essentials as well.
    Freddd 3576 Replies
    • October 4, 2008
    • 09:27 PM
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  • Hi Alexburton, Unfortunately b12 serum level is not a definitive test. If I had been tested, which I wasn't because I was taking 1000mcg of cyanob12 per day, mine would have turned out "normal" or even "high". Unfortunately I was dying from the funtional deficiencies I had despite the cyanob12. I am one of those people who body can't convert cyanob12 to the two active forms, methylb12 and adenosylb12. They are the only active in humans forms of b12. My whole mouth was inflamed and sore. My tongue was "beef-red" and was in burning pain all the time. My teeth were ultra sensitve hot and cold. Everything was irritating to my mouth. My bladder burned. My urethra burned. I had IBS. I could and did vomit at any time. My skin was rough and irritated, bumps all over the place. Lot's of infected folicles. I had irritated mucous membranes leading to thick sticky jellied mucous everywhere in my body. I had frequent pneumonias and used an asthma treatment, Albuterol. Everything irritated my skin. As to how my epithilial tissues healed, EVERYTHING, and I do mean everything, in the preceding paragraph has healed and is normal. Without the methylb12 plus cofactors my skin was unable to heal, unable to form the new tissue and doing it badly. Much of a malfunctioning immune system could also be caused by funtional b12 deficiencies as the proper funtioning of the immune system is 100% dependent on sufficient methylb12, and other things. I repeat, the serum level is totally irrelavant. A trial with one of the effective brands of natural active b12 along with necessary cofactors can tell you within a few weeks to months whether it will help you heal. A trial is the only definitive test for this. In ten days I no longer had a burning mouth, tongue or bladder. My tongue was on it's way to being normal again. A whole lot more happened too. But you were asking only about epithilial tissues. You are looking for an answer. I am offerring you an answer that is 100% compatible with your symptoms. You are free to try it on and see if it fits. Come on over and look at the list of symptoms and see how well they fit for yourself. Or you can keep looking for a better answer. However, if this one is correct, nothing else will repair your problems. People with functional b12 deficiencies despite serum levels essentially are rarely diagnosed correctly. Slightly better results can be obtained by testing for uMMA and serum homocysteine. These are tests for two out of the 600 or so places that there can be functional deficiencies. The items that made noticable differences in skin, hair and nails were in order, mb12, adb12, SAM-e, b-complex twice a day (up from once a day) and zinc at 65mg/day (up from 15mg). I was already taking all the essentials as well.thanks for the response(gonna read that whole thread)how hard was it for you to get a doctor to treat you for b12 deficiency after you're b12 was in range?are you taking b12 injections now? what over the counter meds do you take for this.
    alexburton 48 Replies
    • October 5, 2008
    • 07:31 PM
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